Saturday, November 08, 2008
New Record
My last tap (on election day) managed to suck out 3.6 liters of fluid from my belly, a personal record. I have been scheduled for weekly taps so I have the option of canceling if I feel like I don't need one.
I had the head of the unit performing the procedure again. I can't say it was pleasant, but at least the only part that hurt was the administration of the numbing agent.
I have decided for now not to go with a permanent drain. The prospect of never being able to have a bath or go into a pool or hot tub (or the ocean) again isn't something I want to take on right now, particularly since Brian and I are planning to take a trip to Traverse City during the holidays, and our hotel room will have a jacuzzi.
In other news, I am waiting for an MRI that is to take place Tuesday evening at 10:40. I am not particularly troubled by small spaces and actually tend to fall asleep inside the torpedo tube. The purpose of the MRI is to determine why I have pain in my left hip--whether the femur or pelvis is fractured or what. The ex-ray was inconclusive. So I am walking with a cane for right now to keep weight off of my leg and am taking some slightly more hefty pain medications than just ibuprofen.
It wasn't just the pain meds that made me imagine Barack Obama won the election, right? It really did happen? Woohoo!
I have said for a while now that I would love to see a woman or a black candidate become president of the United States. I am pleased that not only do we have a historic situation as a black man is now president-elect, but he is well-reasoned, inspires hope, and has fired the imagination of Americans like no one in politics has in a long time. My hope is that he will be able to use the good will and capital he seems to have among other nations to help make the world a more peaceful place.
I am less sanguine about this country's economic situation and think it will take more years than he will have as president to recover from whatever this is--recession? self-adustment? depression? aberration? consequences of irresponsible de-regulation? But I can hope.
Yes, I've got an abundance of hope. And enough stubbornness to think that I may get to see the recovery for myself.
I had the head of the unit performing the procedure again. I can't say it was pleasant, but at least the only part that hurt was the administration of the numbing agent.
I have decided for now not to go with a permanent drain. The prospect of never being able to have a bath or go into a pool or hot tub (or the ocean) again isn't something I want to take on right now, particularly since Brian and I are planning to take a trip to Traverse City during the holidays, and our hotel room will have a jacuzzi.
In other news, I am waiting for an MRI that is to take place Tuesday evening at 10:40. I am not particularly troubled by small spaces and actually tend to fall asleep inside the torpedo tube. The purpose of the MRI is to determine why I have pain in my left hip--whether the femur or pelvis is fractured or what. The ex-ray was inconclusive. So I am walking with a cane for right now to keep weight off of my leg and am taking some slightly more hefty pain medications than just ibuprofen.
It wasn't just the pain meds that made me imagine Barack Obama won the election, right? It really did happen? Woohoo!
I have said for a while now that I would love to see a woman or a black candidate become president of the United States. I am pleased that not only do we have a historic situation as a black man is now president-elect, but he is well-reasoned, inspires hope, and has fired the imagination of Americans like no one in politics has in a long time. My hope is that he will be able to use the good will and capital he seems to have among other nations to help make the world a more peaceful place.
I am less sanguine about this country's economic situation and think it will take more years than he will have as president to recover from whatever this is--recession? self-adustment? depression? aberration? consequences of irresponsible de-regulation? But I can hope.
Yes, I've got an abundance of hope. And enough stubbornness to think that I may get to see the recovery for myself.
Labels: Barack Obama, hip, MRI, paracentesis, ultram
Saturday, September 13, 2008
The News--It is Good!
So I went to see Dr. Bierman the orthopedic specialist (she's the who saw me three years ago when I had broken the right side of my pelvis) about the pain in my left hip and femur.
She has looked at the ex-rays. Her assistant came in and prodded me to determine where the areas of pain are, wiggled my leg around, and then went to get her. She came in and poked where the assistant said I was having my pain, and based on what they found, they both agreed my horrible affliction was probably.........
....bursitis!
There appeared to be no structural reason why I can't put full weight on my hip and I was able to jettison the cane for now. I'm very excited about this.
Granted, I've had false diagnoses before, but this time it's a specialist in the cancer center assessing my hip. They were able to do a procedure in the office where first they numbed my hip with lidocaine and something else (which was actually the worst part) and then they injected a bunch of fluid that included a corticosteroid to help reduce inflammation. They rubbed the hip to spread the fluid around, and had me walk for about ten minutes. I also got a prescription to visit a physical therapist to get information on exercises I can do to make the bursitis go away so I hopefully won't need more shots.
I feel so much better. Granted, if the pain returns they can still do scans, but I'm happy with having the orthopedic person tell me I'm not in danger of breaking my femur or hip. Woohoo!
She has looked at the ex-rays. Her assistant came in and prodded me to determine where the areas of pain are, wiggled my leg around, and then went to get her. She came in and poked where the assistant said I was having my pain, and based on what they found, they both agreed my horrible affliction was probably.........
....bursitis!
There appeared to be no structural reason why I can't put full weight on my hip and I was able to jettison the cane for now. I'm very excited about this.
Granted, I've had false diagnoses before, but this time it's a specialist in the cancer center assessing my hip. They were able to do a procedure in the office where first they numbed my hip with lidocaine and something else (which was actually the worst part) and then they injected a bunch of fluid that included a corticosteroid to help reduce inflammation. They rubbed the hip to spread the fluid around, and had me walk for about ten minutes. I also got a prescription to visit a physical therapist to get information on exercises I can do to make the bursitis go away so I hopefully won't need more shots.
I feel so much better. Granted, if the pain returns they can still do scans, but I'm happy with having the orthopedic person tell me I'm not in danger of breaking my femur or hip. Woohoo!
Labels: bursitis, Dr. Bierman, hip
Wednesday, September 10, 2008
The Hip Bone's Connected to the...Thigh Bone (isn't it?)
And so I've been having some hip pain for the last few days, which seemed to feel worse as I either twisted while putting weight on my left leg, or tried to roll over in bed.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Normally I would chalk it up to random soreness (like the pain in my shoulder I think comes from sleeping on my arm in a wonky manner), but I refuse to blow off pain in my hips, especially after the ordeal in 2005 which left me with pelvis crumbs, requiring a month-long stay in the hospital after seven months of useless and ineffective treatment, and required a move to an apartment without lots of stairs.
I was going to call my nurse practitioner about it in a few days if the pain hadn't gone away, but at infusion today the chemo nurse asked if I was having any pain. So I admitted that I was, that it wasn't bad, but I was wondering if I should get an ex-ray or something. So I spoke to the PA, who set me up with ex-rays right away. They got a wheelchair for me--it was very wide; I felt compelled to make beeping noises as we rolled down the hallway--because they didn't want my hip to blow out as I was on my way for a diagnostic test.
The results did show some "activity." Unlike the last time, the part that's becoming a little spongy is the spot connecting the main part of my left femur with the ball joint that fits into the socket of the pelvis. I think there's also some damage on the top ridge of my pelvis. The PA told me I'd need more precise scans--which I am hoping do NOT include a CT with contrast dye because IVs are eeeeeeeeeeevil--and I'll be set up with an appointment to see the orthopedic surgeon. I saw her once before when I began treatment at U of M. There was noting to be done about my pelvis then, but there might be something to be done to "shore up" my femur.
I've got a cane now because I really don't want to tote a dorky old-person walker with me wherever I go. I need one of the hot-rod walkers that have the hand-brakes and built-in seat.
Labels: CT scan, hip, infusion, IV, Lita, stairs, walker, wheelchair, x-rays
Friday, August 08, 2008
The Five-Year Mark
Five years ago today I had a biopsy. I was very surprised that my biopsy would involve taking out a golf-ball sized chunk since I thought biopsies consisted of taking a core sample with a needle. Both are true, but I didn't have a solid mass so they needed to do surgery. My biopsy was a guided wire procedure (which I will never submit to again) and I fainted while sitting at the mammogram machine. After the biopsy and after puking from the anesthesia, they let me go home.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
I went to a computer training class the next day. I remember very clearly sitting in the classroom and that I had a PC in front of me and that the instructor wrote some stuff on the board. I remember that I walked to Einstein Bagel for lunch and I remember what I had to eat. I haven't the slightest idea of the content of the class, though. It was a class on cgi, which I haven't the slightest idea how to use.
The next week I had an appointment with the surgeon, who did not have the pathology results yet. I asked him if my breast (which looked very sad, bruised, and deflated) would return to a natural shape on its own, or what. He told me it would fill out on its own and to quit looking in the mirror.
A couple of days later, I got a call from the surgeon's office to set up another appointment to go over the results. It was strongly suggested that I have someone with me. Soon afterwards I got a very panicked call from my primary care physician. She was very nervous, and didn't know what to say. So she blurted out that she was so sorry that the results showed I had cancer.
I stood in my kitchen and thought, "No wonder they want somebody to come with me to see the surgeon."
"Ok," I said.
It wasn't really Ok.
Whatever happened to, "You're so young, these things are almost always nothing," or "3 out of 4 times it turns out to be harmless"? By the time I got to my biopsy, it was "You have a 90% chance of being totally fine."
My mom took me to the appointment. Dr. Barbi had a box of tissues, many explanatory brochures and pictures, as well as sample drains to show me what would be involved to care for the wounds. I sat there dully, listening to him say how lucky it was that this was caught early. When it's caught early, treatment is very successful.
I had a tiny bit of microinvasion. Some cells were beginning to escape the confines of the ducts, but he was satisfied that this was still extremely early. I needed to coordinate with a plastic surgeon, and there were two that he typically worked with. I called the first name on the list and then had surgery in November.
Tiny cells just starting to bust out.
Diagnosis in August, surgery in November. Was that too long? No, I was assured. Plus, I opted to do chemotherapy which was sure to take care of any pesky floating cancer cells. 98% success rate for the type of cancer I had.
I "sailed" through treatment. I was called a "trooper." Success!
And technically, I am a "success." It's one of the happier statistics that I can say I'm still alive five years after treatment. I had always assumed that this meant being disease free five years later, but it does not.
I kind of hoped for more.
I certainly didn't hope for a broken, mangled hip. I didn't hope for an enlarged spleen and ascites from a damaged liver. I didn't hope for tumors in my brain. I didn't hope for multiple hospitalizations both from the disease itself and secondary infections.
The fact that I feel reasonably well, although somewhat wimpy and water-logged is amazing, but I still carry around anger about what I perceive as the "lies" that I was told about this condition. I still wonder about the gap between diagnosis and treatment. I wonder about the lack of follow-up and certainty on the part of my doctors that my early-stage cancer was treated with spectacular success, which resulted in months of inappropriately treated agony.
And I wonder why the emphasis on "early detection" is more evident than research for treatment of people who are still alive after five years, but waiting for a cure.
Labels: ascites, biopsy, chemo, DCIS, Dr. Barbi, hip, hospital, liver, mammogram, mom, spleen, surgery
Tuesday, November 28, 2006
Giddyup
During our weekend at Brian's parents house in Evart, Michigan, we thought it might be neat to go horseback riding. The weather was beautiful, and I thought there might be places out in the country that would support riding stables open to the public.
Brian's dad heroically called a bunch of places, and Brian called a bunch of places. It turns out that many stables that normally would have trail riding were closed either for the holiday or because it's hunting season.
I suppose it would suck to get shot at while out riding.
When Brian and I left on Saturday, we found ourselves on the western side of the state at the Double JJ, which did indeed have openings for a trail ride at 2:00 p.m. We arrived early and wandered around the "Back Forty" which is set up like an old western town complete with jail, souvenir shop, and saloon where you can get burgers and grilled cheese and fries and what not.
We lined up to climb the stairs of the mounting platform, and the ranch employees brought forth around 20 horses for all of the people riding that day. We were instructed to take the horse over to one of the watering troughs, then line up by the gate. Brian's horse, Speckles, was very thirsty and Brian couldn't get him away from the trough (later during the ride, we opted for the slower ride that was walking only...I will not say it was specifically out of deference to Brian's lack of experience--I'm tempted to, but it's just as well I didn't try to bounce the heck out of my gimpy hips on a trotting horse). There was some debate about my horse's name. Some of the employees call her Oatmeal. Others call her Vomit. She was sort of dappled beige, cream, and brown.
I guess it depends on how you feel about oatmeal.
I enjoyed the ride very much. We saw wild turkeys and did not encounter any hunters. The Double JJ has cattle drives where they actually teach you how to herd cattle.
This ride was important to me--back when I broke my hip, I remember emailing Sarah (Sarah and Danielle and I had talked about planning a trip to a "dude ranch" the previous summer) that I probably wouldn't be able to ride horses any more, and that the possibility of a dude ranch vacation wasn't looking good. Well, f*ck that. I can ride a horse; I don't see why I can't take any kind of vacation I want (money notwithstanding). I am very proud that I was able to get on the horse's back and that I could walk when I got off. Ok, I was a bit saddle sore, but that's normal.
Brian says he prefers his steel horse. That's fine, but I don't get to ride the steel horse by myself.
The Double JJ also has sled dogs; we spent some time feeding them doggie treats from a gumball machine bolted to a tree by their enclosure. There's an indoor water park, but we did not have bathing suits. As we ambled to the car, walking funny from the long ride, a wedding party showed up--the bridesmaids were carefully carrying their dresses and I think we saw the wedding dress arive. They (the people AND the dresses) were going to assemble in the dance hall for the ceremony. I wouldn't necessarily have wanted a western wedding, but it made me pretty happy that people were assembling to have fun and celebrate.
Brian's dad heroically called a bunch of places, and Brian called a bunch of places. It turns out that many stables that normally would have trail riding were closed either for the holiday or because it's hunting season.
I suppose it would suck to get shot at while out riding.
When Brian and I left on Saturday, we found ourselves on the western side of the state at the Double JJ, which did indeed have openings for a trail ride at 2:00 p.m. We arrived early and wandered around the "Back Forty" which is set up like an old western town complete with jail, souvenir shop, and saloon where you can get burgers and grilled cheese and fries and what not.
We lined up to climb the stairs of the mounting platform, and the ranch employees brought forth around 20 horses for all of the people riding that day. We were instructed to take the horse over to one of the watering troughs, then line up by the gate. Brian's horse, Speckles, was very thirsty and Brian couldn't get him away from the trough (later during the ride, we opted for the slower ride that was walking only...I will not say it was specifically out of deference to Brian's lack of experience--I'm tempted to, but it's just as well I didn't try to bounce the heck out of my gimpy hips on a trotting horse). There was some debate about my horse's name. Some of the employees call her Oatmeal. Others call her Vomit. She was sort of dappled beige, cream, and brown.
I guess it depends on how you feel about oatmeal.
I enjoyed the ride very much. We saw wild turkeys and did not encounter any hunters. The Double JJ has cattle drives where they actually teach you how to herd cattle.
This ride was important to me--back when I broke my hip, I remember emailing Sarah (Sarah and Danielle and I had talked about planning a trip to a "dude ranch" the previous summer) that I probably wouldn't be able to ride horses any more, and that the possibility of a dude ranch vacation wasn't looking good. Well, f*ck that. I can ride a horse; I don't see why I can't take any kind of vacation I want (money notwithstanding). I am very proud that I was able to get on the horse's back and that I could walk when I got off. Ok, I was a bit saddle sore, but that's normal.
Brian says he prefers his steel horse. That's fine, but I don't get to ride the steel horse by myself.
The Double JJ also has sled dogs; we spent some time feeding them doggie treats from a gumball machine bolted to a tree by their enclosure. There's an indoor water park, but we did not have bathing suits. As we ambled to the car, walking funny from the long ride, a wedding party showed up--the bridesmaids were carefully carrying their dresses and I think we saw the wedding dress arive. They (the people AND the dresses) were going to assemble in the dance hall for the ceremony. I wouldn't necessarily have wanted a western wedding, but it made me pretty happy that people were assembling to have fun and celebrate.
Labels: Brian, Danielle, Double JJ, Evart, hip, horses, Sarah, Thanksgiving, vacation, wedding
Saturday, November 11, 2006
Mostly Better
I should probably state that the bus ride is over. I'm feeling mostly better.
I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.
My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.
My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.
My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.
But I can't complain.
I still have lots of congestion and am on some antibiotics and have also been extremely tired. I don't think the antibiotics I pleaded for last Tuesday are working well (let's just say that today I asked Brian to buy some cranberry juice in my desperation) and will try to call tomorrow.
My left eye itches and I feel a little achey. The apartment is too cold. My right hand is a little bit chafed and my left thumb is somewhat crushed from trying to knit with squeaky chenille.
My hair is stupid and I have acne. My right hip is giving me some twinges and I can't remember when I last changed the fentanyl patch.
My lower back is sore. I've been feeling some tightness under my left breast and naturally worry about it. I keep having to sneeze and the wires in my braces are getting too long and poke into the sides of my cheeks.
But I can't complain.
Labels: antibiotics, braces, Brian, fentanyl, hair, hip, infection, nausea, tired
Friday, September 22, 2006
Woohoo! I'm a Case Study! and Crap...I Hate Human Resources...
At my appointment this past Wednesday, Lita (my oncologist's nurse practitioner) told me that she had spoken at a conference in Chicago, where she mentioned me as an example of how well newer cancer treatments can work. I'm a case study!
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Of course my name was not used, to protect my identity.
Dr. Hayes mentioned that he had recently had a conversation with Dr. Smith (the attending physician for the floor of the hospital where I spent the first two weeks of December), who was not at all certain that I'd turn out very well. "Oh, that poor lady," Dr. Smith took a dim view. I can imagine why he thought my case was dire: I was very, very ill in December, and tended to immediately vomit whenever he or his troupe of doctorlets came to visit me. I had what Lita describes as "the worst case of gastritis" she had ever seen, had a hip that broke as a result of metastatic disease, was undergoing radiation, and couldn't be moved without copious amounts of morphine.
What a very sad sack I was.
Well, things have turned around completely. Last weekend Brian and I went to visit my relatives in Cleveland, and not only was I able to stay on Aunt Barb's second floor (thanks for the hospitality, Aunt Barb), but I was able to show off my new, walker-free self to Grandma. "This is what physical therapy can do," I tried to tell her. Grandma is 93 and doesn't want to go to physical therapy. I can't say I blame her, but she does have exercises she could be doing at home. (Also, Grandma needs to wear her compression stockings. I highly recommend the toeless ones by Juzo...they included a little paper slipper that made them very easy for Brian to put them on my feet, after being shown how by the occupational therapist.) I was a little tired after walking back to the car from Jacob's Field on Friday, and walking around the Cleveland Zoo on Saturday definitely made me sore, but it was more the result of lots of walking after long inactivity, and nothing like the hip pain I experienced last year before being properly diagnosed.
Dr. Hayes also again mentioned the idea of taking a break from chemotherapy. I am more disposed to the idea this time. I will be undergoing more rounds of chemo and then in November will be re-scanned. If the downward trend on my lab results continues, and the tumors in my liver shrink further (to non-scary sizes: the largest is still around 4 centimeters), then I will be taken off Abraxane for as long as things appear to be ok. I will continue receiving Avastin and Zometa, which do not have the kind of side effects that chemotherapy does. I'm disappointed to have to continue going for infusions, but being able to grow my hair and stop getting Neupogen shots (which I've been weaseling out of having Brian give me) will be very nice. Lita called and left the latest lab results: the tumor marker which had gone down to 16.1 is now 15. The one which had gone down to 65 is now 45. (I will try to amend this with more accurate information when I get home.)
Now that things are going so well and that I am back at work full time, I've had a human resources snafu thrust upon me. I am very lucky in that my benefits allow me a very large number of "extended sick leave" hours at full pay. Unfortunately, I have only 20 of those hours remaining. I can use extended sick leave hours at half pay (which only contributes half to my retirement and benefits), or if I don't use extended sick leave hours at all for thirty days, they will be renewed to 1056 hours available.
However, those 1056 hours cannot be used for the same occurrence of an illness. Basically this means that in order to use the renewed extended sick leave hours, I have to develop some OTHER catastrophic medical situation aside from the chronic disease which for which I will be undergoing treatment for the rest of my life.
I could use my fifteen days of short term sick leave for my infusion appointments (these tend to take six hours or more) and other doctor's appointments. However, since I get infused roughly three times a month, within less than five months my sick leave will be gone for the year. Also, due to the library's interpretation of the university's Standard Practice Guide, taking three sick days per month could, in three months' time, give my supervisor (who, mercifully, is not interested in punative tracking of my schedule) grounds to write me up and fire me.
I could use my vacation time--which did not accrue while I was on extended sick leave--for my appointments, however I get only two vacation days per month and it hardly seems fair to deny me my vacation time in entirety because of a medical condition.
I could take time off without pay, which isn't appealing for the same reasons taking half-pay extended sick leave isn't a great option. Or I could rework my schedule to work longer hours on the other days of the week that I am not receiving medications intraveinously. Sure, that makes sense--let's have somebody on chemotherapy working longer hours to make up for it.
This is all patently ridiculous. I'm not a malingerer; I work hard and contribute positively to the library. I feel like I'm being punished for something utterly out of my control: I didn't choose to be afflicted by a chronic condition, and if I could magically stop going to as many appointments as I do, I'd be thrilled. However, there's nothing I can do about it, and I feel like the university's policy is designed to keep them from having to pay for somebody with a chronic illness.
Grounds for dispute under the Americans with Disabilities Act? I don't know.
Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa
Wednesday, August 30, 2006
The Best Toystore in the World and Why I Didn't Need Shrinkydinks After All
(Skip the vacation filler and proceed directly to the payoff.)
I opted, instead, to purchase a paint 'n' peel window decal kit, which consists of two black tubes of outline paint, and an assortment of translucent fill-in colors. The kit allows you to make your own "stained glass" style window decorations, which can be reused, as long as you store them on plastic sheets or keep them from accidentally folding up as they are impossible to unfold. (Alas, my poor butterfly decal decided to curl up and return to beeing a cocoon.)
The Toy Box is the best toy store I've ever been to. Each year on my vacation to Martha's Vineyard with my friend and college roommate Sarah and her roommate (and also my friend) Danielle, we make a point of stoping at this store to see what they have and possibly buy cool stuff. Last year I got a pirate hat and some hair beads. Sadly, I can't currently use the hair beads, but the pirate hat is good for any occasion, ARRRRR!
Around every corner there are neat and creative things. The rooms are irregularly shaped, the store is lacking in aisles, the passageways are cramped and overflowing, but everywhere there is something just begging to be picked up and tried out. Many of the doodads for sale have open samples that can be whirled, squeezed, prodded, flung, and generally examined. This store sells Breyer Horses, which is my personal litmus test for what makes a "good" toy store. It also has a fantastic costume collection, which makes me sad that I'm too big to fit the ballerina outfits and that it is no longer socially acceptable for me to go trick-or-treating.
There are all manner of games, including really cool ones that are unavailable at most chain toy stores. The stuffed animal selection was small, but mighty. There was this really great collection of woodland creatures that came in varying sizes and had plush stumps you could purchase to store your happy animals in. There were three different sizes of stumps and a beaver home, for each different size of stuffed animal--including a tiny stump with one hole and a carrying strap so you can carry around your favorite teeny critter. There was a three-hole stump so that three of your buddies could be carried at once together. The larger, vertical stumps did not have carrying straps that I could see, but for all I know they had backpack straps, or something. Too cute.
Anyway, just around the corner from those (and the wee hand-knitted finger puppets) were the craft supplies. I decided we needed to invest in some sort of craft to do, and was sorely tempted by the shrinkydink book. It had pages of blank shrinkydink medium so that you could trace patterns or design your own. Sadly, it did not come with suitable colored pencils or markers, and I didn't really want to buy colored pencils when I've got several hundred colored pencils at home.
Then I spotted the window peel-and-stick decal book, which fascinated me. I opted for a replacement kit, which included instructions, and the three of us proceeded to make colorful stained-glasslike window decals including a couple of snakes (inspired by the rollicking, if not exactly good, Snakes on a Plane), a bunch of grapes, a mermaid, and more.
I also had fun on my vacation going to the beach, visiting stores, going to Chicama Vineyards for a tour, eating mondo sandwiches from Humphreys, and generally tooling around the island in Sarah's very intrepid Hyundai. I got very sunburned at Longpoint beach despite repeated applications of sunscreen and learned that any number of my medications make me more susceptible to sunburn and that I probably should have kept my legs covered. I'm still itchy.
When I got home from the airport, Brian had a stuffed pug waiting for me in the car, and anniversary balloons and a card in celebration of our six-month anniversary. In a way I can't believe it's been that long, although in some ways it seems like so much has happened in the past year that we've packed several years in the space of one.
(The Payoff.)
I had an appointment with Dr. Hayes the Tuesday after I got back . These appointments have been very early, but I opt not to go to work on those days since I generally feel wiped out by the infusion (and probably also by getting up so damn early). Lita gave me the results of the CT and Bone scans, which Dr. Hayes reiterated when he came into the room. Both showed no new metastatic lesions, woohoo! The bone scan showed that there were improvements to the lower spine, a rear portion of one of the lower ribs (it did not say whether it was right or left), and the illiac joint, presumably in my right hip which was where the trouble all began. The CT scan showed that the lungs are improving and that the tumors in my liver (which, oddly, has continued to function normally this whole time) have shrunk to half the size. I was never told that the largest of the tumors had reached seven centimeters; Lita and Dr. Hayes only reassured me that the liver was functioning completely normally. Now that the largest of the tumors is down to three centimeters, I guess it's ok to let me know.
Brian knew about the alarming tumor size, but concealed it from me as well. This may explain some of his panic at my condition. I'm not sure how I feel about having medical things purposefully concealed from me, but I guess dwelling on the tumor sizes in an organ that's doing otherwise just fine is somewhat worrying about nothing. Livers are weird and very resilient, luckily for me.
Dr. Hayes then mentioned that if things continue to go the way they are going, I might want to consider taking a break from the chemotherapy. He said that some people who are doing relatively well and tolerating the treatments choose to stay on it. Those who choose to take a break from the chemo may have a reoccurrence of tumor activity, but when they start up the therapy again, this usually clears up quickly. Statistically there is no difference in the overall prognosis of both groups. For those few people who do not respond well when going back onto the chemotherapy, it's usually because they were starting to get worse before going on the break. Naturally Dr. Hayes does what he can to avoid this. In any case, I potentially have the choice before me and I'm not sure what to do.
Taking a "break" is frightening. I'm terrified more than anything else of getting brain mets, and what's to stop it from happening if I'm not being treated? Also, the last time I was on a break--granted, it was a year and a half long and I wasn't being closely monitored during that time--things went very badly for me and I ended up in a hospital bed with a badly fractured pelvis and one of the worst cases of gastritis Lita says she has ever seen.
On the other hand, I am sick and tired of feeling sick and tired. It often occurs to me that I will get to think about cancer every day for the rest of my life, which is not a happy thought. Maybe it would be nice to skip the infusions for now and just keep up with regular blood tests. Maybe I would feel less tired. Maybe the hot flashes would subside. Maybe I can spend some time growing my hair. (There seem to be a higher proportion of little stubbly greys on my head than there have ever been before, particularly on the left side, for some reason...I used to have only one or two. I don't know if growing my hair will actually make me happy; it might just make me feel old.)
Anyway, the next day I looked at the printed reports which included not only what Lita and Dr. Hayes had already gone through, but also had the latest blood test results. These include all kinds of baffling numbers about my blood chemistry, but also indicate the results of two specific tests of tumor markers in my blood. I don't have the actual reports in front of me, but when I saw the numbers and compared them to my last cumulative report, I had to rub my eyes and wonder if the decimal point was in the wrong place. On one of the tests I have gone from a high of 255 (in May, I think) to roughly around 150 for the previous test, and then the latest test shows the number 16.5. Normal is either 3 for non-smokers, or 5 for smokers.
I am amazed. I seem to be doing unbelievably well. My tumor counts are down, and my actual tumors are shrinking.
I didn't need to buy shrinkydinks after all because I'm carrying some around with me everywhere I go, albeit icky ones that nobody really wants to look at.
I opted, instead, to purchase a paint 'n' peel window decal kit, which consists of two black tubes of outline paint, and an assortment of translucent fill-in colors. The kit allows you to make your own "stained glass" style window decorations, which can be reused, as long as you store them on plastic sheets or keep them from accidentally folding up as they are impossible to unfold. (Alas, my poor butterfly decal decided to curl up and return to beeing a cocoon.)
The Toy Box is the best toy store I've ever been to. Each year on my vacation to Martha's Vineyard with my friend and college roommate Sarah and her roommate (and also my friend) Danielle, we make a point of stoping at this store to see what they have and possibly buy cool stuff. Last year I got a pirate hat and some hair beads. Sadly, I can't currently use the hair beads, but the pirate hat is good for any occasion, ARRRRR!
Around every corner there are neat and creative things. The rooms are irregularly shaped, the store is lacking in aisles, the passageways are cramped and overflowing, but everywhere there is something just begging to be picked up and tried out. Many of the doodads for sale have open samples that can be whirled, squeezed, prodded, flung, and generally examined. This store sells Breyer Horses, which is my personal litmus test for what makes a "good" toy store. It also has a fantastic costume collection, which makes me sad that I'm too big to fit the ballerina outfits and that it is no longer socially acceptable for me to go trick-or-treating.
There are all manner of games, including really cool ones that are unavailable at most chain toy stores. The stuffed animal selection was small, but mighty. There was this really great collection of woodland creatures that came in varying sizes and had plush stumps you could purchase to store your happy animals in. There were three different sizes of stumps and a beaver home, for each different size of stuffed animal--including a tiny stump with one hole and a carrying strap so you can carry around your favorite teeny critter. There was a three-hole stump so that three of your buddies could be carried at once together. The larger, vertical stumps did not have carrying straps that I could see, but for all I know they had backpack straps, or something. Too cute.
Anyway, just around the corner from those (and the wee hand-knitted finger puppets) were the craft supplies. I decided we needed to invest in some sort of craft to do, and was sorely tempted by the shrinkydink book. It had pages of blank shrinkydink medium so that you could trace patterns or design your own. Sadly, it did not come with suitable colored pencils or markers, and I didn't really want to buy colored pencils when I've got several hundred colored pencils at home.
Then I spotted the window peel-and-stick decal book, which fascinated me. I opted for a replacement kit, which included instructions, and the three of us proceeded to make colorful stained-glasslike window decals including a couple of snakes (inspired by the rollicking, if not exactly good, Snakes on a Plane), a bunch of grapes, a mermaid, and more.
I also had fun on my vacation going to the beach, visiting stores, going to Chicama Vineyards for a tour, eating mondo sandwiches from Humphreys, and generally tooling around the island in Sarah's very intrepid Hyundai. I got very sunburned at Longpoint beach despite repeated applications of sunscreen and learned that any number of my medications make me more susceptible to sunburn and that I probably should have kept my legs covered. I'm still itchy.
When I got home from the airport, Brian had a stuffed pug waiting for me in the car, and anniversary balloons and a card in celebration of our six-month anniversary. In a way I can't believe it's been that long, although in some ways it seems like so much has happened in the past year that we've packed several years in the space of one.
(The Payoff.)
I had an appointment with Dr. Hayes the Tuesday after I got back . These appointments have been very early, but I opt not to go to work on those days since I generally feel wiped out by the infusion (and probably also by getting up so damn early). Lita gave me the results of the CT and Bone scans, which Dr. Hayes reiterated when he came into the room. Both showed no new metastatic lesions, woohoo! The bone scan showed that there were improvements to the lower spine, a rear portion of one of the lower ribs (it did not say whether it was right or left), and the illiac joint, presumably in my right hip which was where the trouble all began. The CT scan showed that the lungs are improving and that the tumors in my liver (which, oddly, has continued to function normally this whole time) have shrunk to half the size. I was never told that the largest of the tumors had reached seven centimeters; Lita and Dr. Hayes only reassured me that the liver was functioning completely normally. Now that the largest of the tumors is down to three centimeters, I guess it's ok to let me know.
Brian knew about the alarming tumor size, but concealed it from me as well. This may explain some of his panic at my condition. I'm not sure how I feel about having medical things purposefully concealed from me, but I guess dwelling on the tumor sizes in an organ that's doing otherwise just fine is somewhat worrying about nothing. Livers are weird and very resilient, luckily for me.
Dr. Hayes then mentioned that if things continue to go the way they are going, I might want to consider taking a break from the chemotherapy. He said that some people who are doing relatively well and tolerating the treatments choose to stay on it. Those who choose to take a break from the chemo may have a reoccurrence of tumor activity, but when they start up the therapy again, this usually clears up quickly. Statistically there is no difference in the overall prognosis of both groups. For those few people who do not respond well when going back onto the chemotherapy, it's usually because they were starting to get worse before going on the break. Naturally Dr. Hayes does what he can to avoid this. In any case, I potentially have the choice before me and I'm not sure what to do.
Taking a "break" is frightening. I'm terrified more than anything else of getting brain mets, and what's to stop it from happening if I'm not being treated? Also, the last time I was on a break--granted, it was a year and a half long and I wasn't being closely monitored during that time--things went very badly for me and I ended up in a hospital bed with a badly fractured pelvis and one of the worst cases of gastritis Lita says she has ever seen.
On the other hand, I am sick and tired of feeling sick and tired. It often occurs to me that I will get to think about cancer every day for the rest of my life, which is not a happy thought. Maybe it would be nice to skip the infusions for now and just keep up with regular blood tests. Maybe I would feel less tired. Maybe the hot flashes would subside. Maybe I can spend some time growing my hair. (There seem to be a higher proportion of little stubbly greys on my head than there have ever been before, particularly on the left side, for some reason...I used to have only one or two. I don't know if growing my hair will actually make me happy; it might just make me feel old.)
Anyway, the next day I looked at the printed reports which included not only what Lita and Dr. Hayes had already gone through, but also had the latest blood test results. These include all kinds of baffling numbers about my blood chemistry, but also indicate the results of two specific tests of tumor markers in my blood. I don't have the actual reports in front of me, but when I saw the numbers and compared them to my last cumulative report, I had to rub my eyes and wonder if the decimal point was in the wrong place. On one of the tests I have gone from a high of 255 (in May, I think) to roughly around 150 for the previous test, and then the latest test shows the number 16.5. Normal is either 3 for non-smokers, or 5 for smokers.
I am amazed. I seem to be doing unbelievably well. My tumor counts are down, and my actual tumors are shrinking.
I didn't need to buy shrinkydinks after all because I'm carrying some around with me everywhere I go, albeit icky ones that nobody really wants to look at.
Labels: bone scan, Brian, chemo, CT scan, Dr. Hayes, hair, hip, hot flash, Lita, liver, lungs, Martha's Vineyard, pug, tired, toys, vacation
Wednesday, April 26, 2006
More Like Myself; Less Like Igor
Yesterday I went in to the orthotics and prosthetics clinic to get fitted for an orthotic insert for my shoe. Dr. Rodriguez determined that there is now a 1-inch discrepancy between my two legs as a result of my hip fracture, and sent me to the clinic.
While I wasn't excited at the prospect of getting something to stick into my shoes (I imagine it won't work in many of my fancy dress shoes), I thought it would be nice to be able to stand and walk without having my hips tilted, which can contribute to lower back pain and is just generally awkward.
Yesterday the doctor at the clinic took some little rectangular platforms and had me stand on them with my back to him as he had me lift up my shirt so he could press down on my hip bones (eep, ticklish) to see if that particular height made them level. The ideal platform height turned out to be 3/4 of an inch, which is problematic: for a discrepancy that size, they usually have the platform attached to the outside of the shoe.
In order to correct the problem perfectly, I could put 3/4 inch platforms on each and every right shoe I own. Eek!
So I asked if it would be possible to try the smaller insert. It wouldn't correct things entirely, but it would be easier, less obtrusive, and might at least help reduce some of my lower back pain. He agreed, and now I have an insert that helps me walk more like me and less like Igor looking for brains. I also think if I'm more steady on my feet, I can avoid falling like I did which ultimately caused the problem to begin with.
While I wasn't excited at the prospect of getting something to stick into my shoes (I imagine it won't work in many of my fancy dress shoes), I thought it would be nice to be able to stand and walk without having my hips tilted, which can contribute to lower back pain and is just generally awkward.
Yesterday the doctor at the clinic took some little rectangular platforms and had me stand on them with my back to him as he had me lift up my shirt so he could press down on my hip bones (eep, ticklish) to see if that particular height made them level. The ideal platform height turned out to be 3/4 of an inch, which is problematic: for a discrepancy that size, they usually have the platform attached to the outside of the shoe.
In order to correct the problem perfectly, I could put 3/4 inch platforms on each and every right shoe I own. Eek!
So I asked if it would be possible to try the smaller insert. It wouldn't correct things entirely, but it would be easier, less obtrusive, and might at least help reduce some of my lower back pain. He agreed, and now I have an insert that helps me walk more like me and less like Igor looking for brains. I also think if I'm more steady on my feet, I can avoid falling like I did which ultimately caused the problem to begin with.
Labels: Dr. Rodriguez, hip
Monday, April 17, 2006
Unwelcome surprise: how my hospital bill nearly put me in the hospital
My insurance company sends me periodic statements when they get billed for service by hospitals, physicians, medical professionals, et al. indicating how much money they asked for, how much they actually got, and how much I might owe.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Usually they get far less than they ask for but they seem to be ok with that.
If I ever do have to pay anything, it's usually either a $15 copay or a $30 copay for something I didn't get a referral for. I also once had a statement saying I owed $50, and that turns out to be the amount I owe for ER service if I don't manage to get a referral in the middle of an emergency. I went to the ER the day after I broke my hip and they didn't actually bill me that day, so I got a statement from M-Care telling me that I owed $50. I didn't argue; it's printed on my M-Care card.
This is why when I got a bill from the hospital for $2545.80, I nearly had a coronary, which would have required paying another $50 for an emergency visit to the ER. I got very depressed about this because I was anticipating a nice tax refund from the IRS, and am hoping to buy a new car soon because we have two very unreliable vehicles, and it's time to get something that doesn't make funny noises that make you wonder "Did I ever hear that noise before? Is that normal? Will I be able to afford the next repair bill on this thing?"
$2545.80. It came on Friday and informed me I had fourteen days to pay in full, or it would go to a collection agency, so naturally I was unable to do anything about it and had to worry all weekend.
This morning I called the hospital, and they weren't really able to tell me what the payment was for. So after physical therapy (I got treated once more with electrodes to the butt...my superpowers are going to manifest this time for sure) today I called the insurance company. After being put on hold for several minutes, the lady's conclusion was that it looked like a filing error and she said she would call me back if she found out otherwise.
I hope the phone doesn't ring soon.
Labels: hip, hospital, insurance, physical therapy, superpowers
Thursday, February 23, 2006
Two days before the wedding
It's two days before my wedding, I'm still fighting nausea, and there's an awful lot of backstory to cover.
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
I discovered in the hospital that you can't depend on the caregivers to necessarily give the best care, whatever their intentions. It is vitally important to keep track of your own treatment and to speak up if something doesn't seem right.
Unfortunately, many of the things that don't seem right are just a natural result of being ill or damaged. I started suffering ungodly muscle spasms, particularly at night. You know how when you fall asleep, sometimes your body does that all-over jerk that feels like you've just fallen from mid-air? Or sometimes it feels like electricity, or like all of your muscles just have to tighten all at once. It's involuntary, and usually harmless, but with my hip fracture, it was unbearably painful.
I also had a huge amount of nausea, which seemed to be made worse by anxiety. Every time the attending doctor and his little doctorlets came by, I felt ill. When my mom wanted to talk about wedding invitations--what kind of print, wording, whether to say "the parents of" or have them be from Brian and me--I felt queasy. When anybody talked about possible discharge from the hospital, I became ill. Where was I going to go? I couldn't imagine going back to the second-story apartment in Westland. But what else could I do? Brian began searching for other apartments, and looking at options also made me feel queasy.
At this point, I began physical therapy. I was on some level glad to be getting out of that torturous hospital device they call a "bed" and beginning the process of becoming something that wasn't an immobile lump of protoplasm, although actually having to do it was painful, difficult, tiring, and also caused nausea. Sitting up for long was difficult at first, but at least I did know--from previous experience--that it would pass and that getting up and moving around would ultimately be good for me. The physical therapist would show up, bring a walker, and have me try to get out of bed and move around. First it was three feet away from the bed and back. Then it was to the door and back. Then it was through the door, across the hall and back. Each time my jaunts got successively longer, and she recommended--as an alternative to going home or going into an "assistive care facility" (read: "nursing home")--that I be admitted to the intensive rehabilitation unit on the same floor of the hospital. I would do physical and occupational therapy twice a day.
So I moved to the room where I would spend my Christmas.
On my first day of occupational therapy, I was measured for compression stockings and given a set of adaptive equipment of the kind they gave to Grandma when she had her hip injury several years ago. I too got the sock put-er on-er, the grippy thing, the giant shoe horn, the pants hook. I'm not sure if Grandma also got the leg loop (it looks like one of those "invisible dog" leashes) or not; I found mine to be incredibly helpful for moving my legs onto and off of the bed.
Physical therapy consisted of walking for longer and longer distances using the walker (but putting no weight on the right foot), doing leg exercises on the mat, and occasionally doing arm strengthening using the pulleys or fulcrum weights. They also taught skills like stepping up onto a curb using a walker, sitting down in a car seat from either a wheelchair or a walker, and using a crutch to go up and down stairs.
I had too much anxiety to do the stairs. I was just too worried about my hips crumpling like phyllo pastry, and the therapists didn't press me.
Occupational therapy consisted of getting me dressed and showered in the mornings, and in the afternoon doing a combination of eye-hand coordination activities, some arm strengthening activities, and some arts and crafts. I saw people making these rubber mats with the Michigan M and when offered the tubs of colored rubber tiles, decided I would try to get creative and make an aquatic scene. The therapist was getting visibly impatient with me (she wanted to clear space off the counter) and I couldn't spend as much time planning my picture as I wanted, so I had to do a fairly rudimentary scene with two fish, gravel, some plants, and two different colors of blue to indicate the depth of the water.
Nobody told me it was going to be a doormat. If I'd known, as I told one of the substitute therapists on the Christmas break, I would have planned the picture to be horizontally aligned...as it was, they must have thought I was either mentally deranged or just really careless.
The other therapist turned it sideways the way I had planned it. "Oh hey, that's actually pretty cute!"
Labels: anxiety, Brian, doctorlets, Grandma, hip, hospital, mom, nausea, physical therapy, spasms, stairs, walker, wedding, wheelchair
Wednesday, February 15, 2006
Chocolate Weekend: or, I've been watching too much Food Network
The Food Network (I am enjoying the novelty of cable very much) declared this past weekend to be devoted to chocolate and luuuuuuuv. There were specials on cooking with chocolate, making various confections, the history of chocolate, a chocolate sculpture competition, a wedding cake competition, a very odd segment in which some quirky dude blindfolded people and had them taste unusual items dipped in melted chocolate from one of those new chocolate fountains (oddly, people liked the chocolate-covered cheese puff, and the chocolate-covered carrot wasn't that bad...nay on the chocolate-dipped cheddar cheese, however), most of which I saw multiple times. I've clearly been watching too much of this channel as events will prove, and actually found myself announcing to Brian exactly why I was following particular steps in my cooking this evening.
"Now I'm coating each granule with butter before adding the stock..."
Yes, I cooked for the first time in many months tonight. I intended to do it all myself, but became completely exhausted and had help for the final stages, but am happy and proud to have been able to do something nice for Brian, who's been working very hard to keep me well-fed, despite the challenges (more on that later).
I don't have very many dishes in my repertoire, but one I particularly like involves couscous with toasted pine nuts and chicken with a savory tomato-vegetable sauce adapted from a recipe for something called "chicken provençal" in my cookbook. I tend to use more garlic than required and have nixed the anchovies and olives. It contains onion, garlic, zucchini, eggplant, diced tomato, chicken broth, extra tomato paste or sauce, all simmered together. The chicken is dredged in salted & peppered flour then pan-seared and finally finished up in the vegetable mix. The couscous is cooked with chicken broth instead of water to which a pinch of cinnamon and coriander have been added. The secret ingredient seems to be the pinch of cayenne pepper in the vegetables. The whole thing is very savory and spicy.
We went shopping for ingredients yesterday at Meijer, where I tooled around in one of those motorized scooters. I managed not to run anybody over and was getting really good at making three-point 180 turns. At the store I went a little nuts and started tossing swanky cheeses into my basket. Strawberries. A giant bag of chocolate chips. A French baguette. Crackers.
When the gentleman arrived home from work, there was a platter of various cheeses and fruits, including camembert (a less bitter cousin of Brie and one of my favorites), double gloucester, and some kind of white cheese that had cranberries in it. I also had grapes and strawberries on the tray, some pistachios, and a wine glass filled with apple slices. I also made up a few appetizers consisting of a bread round, slice of camembert, apple slice, drizzled with balsamic vinegar. I regret not having taken a picture of the cheese tray, but we did have presence of mind to photograph the dessert, which was chocolate covered strawberries, which I made this morning.
They were served on a chocolate heart-shaped plate which I sculpted from the leftover melted chocolate and put in the freezer on a telephone book to keep its shape.
The Food Network is creating a monster.
The double-boiler which melted the chocolate, the appetizer plates, the wine glasses, and the beautiful flower centerpiece were gifts from my wedding shower, which took place this past Sunday, thrown by my friends Robyn and Lori. Robyn, as I have often said to people, is a devotée of Martha Stewart. Robyn has impeccable taste and is very good at hosting events and putting together all manner of party things. Foods. Centerpieces. It's really quite amazing.
So the two of them threw of lovely luncheon at The Dearborn Inn, to which a small group of friends and coworkers was invited. There were incredibly delicious sandwiches, there was cake (I have been breakfasting on cake leftovers), there were gifts which will necessitate thank-you notes before I forget who gave me what. I've been having a stupidly great time picking registry things; I tried to be practical, but then was talked into asking for bone china, stemware, flatware, and serving pieces by Robyn, who kept insisting, "Are you sure you don't want to sign up for some Waterford crystal or some Lenox china?" My favorite gift was the 3-tier serving tray which I envision using for high tea. I will need to be sure to invite Robyn and Lori for cucumber sandwiches some day soon. Brian was invited to the shower, which he attended with great aplomb, despite his personal preference to be doing almost anything else.
Saturday was equally devoted to girly things as I desperately wanted to go get my hair done at the Mall. I had decided I wanted drastic highlights, which made the whole affair take longer. Then I needed to consult with the stylist about what to do with hair for the wedding since I won't be able to have somebody do it for me. She suggested hot rollers. I have since acquired hot rollers and a wet/dry straightener. (I've also been watching too many makeover shows courtesy of cable as well.)
I am unappologetic about doing frivolous things for myself; this is the first week in a long time I have actually not spent any time vomiting. I am no longer taking MS Contin, which made me unbearably ill. The constant nausea has made keeping me fed and hydrated very difficult. Brian had been trying to tempt me by listing multiple food options in the hopes of finding something that did not repulse me, but having foods listed to me seemed to bring on the nausea. I have tried multiple medications including Zofran, Tigan, and now Anzimet (which, to those without insurance, costs $9,000 for a month's supply). I had been vomiting at least once per week; the last time was at Sears shortly after my last bridal gown fitting. What if the food at the reception bothers me and I yak all over my wedding dress?
Now I feel like that won't be a problem; I'm so relieved.
I am finding other things easier, and yet have new aches and pains which always frighten me. Walking is getting easier; I am beginning to wonder if it might be possible to use the walker only as a backup for going down the aisle. Maybe my dad will be able to bolster me enough without it...I don't know and might be too frightened of falling to try. My hands suddenly hurt more than they ever have before and opening jars is uncomfortable and my fingers are noticably stiff. Is it the arthritis-like ailment of which takers of Arimidex complain? Is it lesions on the bones in my hands? Is this pain in my side a result of stretching funny or are the bones cracked here like they are in my pelvis? Will I ever know how damaged my skeleton is, and are there things I should be doing (or things I should be avoiding) to keep it from collapsing like a crushed can?
I have an appointment with Dr. Hayes next week. Should I wait, or should I ask about my symptoms before then? I never know. Honestly, I'm hesitant to bring it up with Lita, because she will schedule me for more medical tests and appointments right away.
In the meantime, I will watch more cable to take my mind off things, eat some leftover cake, and admire how even something as pedestrian as Crystal Light can taste really good when taken in wafer-thin glass stemware.
"Now I'm coating each granule with butter before adding the stock..."
Yes, I cooked for the first time in many months tonight. I intended to do it all myself, but became completely exhausted and had help for the final stages, but am happy and proud to have been able to do something nice for Brian, who's been working very hard to keep me well-fed, despite the challenges (more on that later).
I don't have very many dishes in my repertoire, but one I particularly like involves couscous with toasted pine nuts and chicken with a savory tomato-vegetable sauce adapted from a recipe for something called "chicken provençal" in my cookbook. I tend to use more garlic than required and have nixed the anchovies and olives. It contains onion, garlic, zucchini, eggplant, diced tomato, chicken broth, extra tomato paste or sauce, all simmered together. The chicken is dredged in salted & peppered flour then pan-seared and finally finished up in the vegetable mix. The couscous is cooked with chicken broth instead of water to which a pinch of cinnamon and coriander have been added. The secret ingredient seems to be the pinch of cayenne pepper in the vegetables. The whole thing is very savory and spicy.
We went shopping for ingredients yesterday at Meijer, where I tooled around in one of those motorized scooters. I managed not to run anybody over and was getting really good at making three-point 180 turns. At the store I went a little nuts and started tossing swanky cheeses into my basket. Strawberries. A giant bag of chocolate chips. A French baguette. Crackers.
When the gentleman arrived home from work, there was a platter of various cheeses and fruits, including camembert (a less bitter cousin of Brie and one of my favorites), double gloucester, and some kind of white cheese that had cranberries in it. I also had grapes and strawberries on the tray, some pistachios, and a wine glass filled with apple slices. I also made up a few appetizers consisting of a bread round, slice of camembert, apple slice, drizzled with balsamic vinegar. I regret not having taken a picture of the cheese tray, but we did have presence of mind to photograph the dessert, which was chocolate covered strawberries, which I made this morning.
They were served on a chocolate heart-shaped plate which I sculpted from the leftover melted chocolate and put in the freezer on a telephone book to keep its shape.
The Food Network is creating a monster.
The double-boiler which melted the chocolate, the appetizer plates, the wine glasses, and the beautiful flower centerpiece were gifts from my wedding shower, which took place this past Sunday, thrown by my friends Robyn and Lori. Robyn, as I have often said to people, is a devotée of Martha Stewart. Robyn has impeccable taste and is very good at hosting events and putting together all manner of party things. Foods. Centerpieces. It's really quite amazing.
So the two of them threw of lovely luncheon at The Dearborn Inn, to which a small group of friends and coworkers was invited. There were incredibly delicious sandwiches, there was cake (I have been breakfasting on cake leftovers), there were gifts which will necessitate thank-you notes before I forget who gave me what. I've been having a stupidly great time picking registry things; I tried to be practical, but then was talked into asking for bone china, stemware, flatware, and serving pieces by Robyn, who kept insisting, "Are you sure you don't want to sign up for some Waterford crystal or some Lenox china?" My favorite gift was the 3-tier serving tray which I envision using for high tea. I will need to be sure to invite Robyn and Lori for cucumber sandwiches some day soon. Brian was invited to the shower, which he attended with great aplomb, despite his personal preference to be doing almost anything else.
Saturday was equally devoted to girly things as I desperately wanted to go get my hair done at the Mall. I had decided I wanted drastic highlights, which made the whole affair take longer. Then I needed to consult with the stylist about what to do with hair for the wedding since I won't be able to have somebody do it for me. She suggested hot rollers. I have since acquired hot rollers and a wet/dry straightener. (I've also been watching too many makeover shows courtesy of cable as well.)
I am unappologetic about doing frivolous things for myself; this is the first week in a long time I have actually not spent any time vomiting. I am no longer taking MS Contin, which made me unbearably ill. The constant nausea has made keeping me fed and hydrated very difficult. Brian had been trying to tempt me by listing multiple food options in the hopes of finding something that did not repulse me, but having foods listed to me seemed to bring on the nausea. I have tried multiple medications including Zofran, Tigan, and now Anzimet (which, to those without insurance, costs $9,000 for a month's supply). I had been vomiting at least once per week; the last time was at Sears shortly after my last bridal gown fitting. What if the food at the reception bothers me and I yak all over my wedding dress?
Now I feel like that won't be a problem; I'm so relieved.
I am finding other things easier, and yet have new aches and pains which always frighten me. Walking is getting easier; I am beginning to wonder if it might be possible to use the walker only as a backup for going down the aisle. Maybe my dad will be able to bolster me enough without it...I don't know and might be too frightened of falling to try. My hands suddenly hurt more than they ever have before and opening jars is uncomfortable and my fingers are noticably stiff. Is it the arthritis-like ailment of which takers of Arimidex complain? Is it lesions on the bones in my hands? Is this pain in my side a result of stretching funny or are the bones cracked here like they are in my pelvis? Will I ever know how damaged my skeleton is, and are there things I should be doing (or things I should be avoiding) to keep it from collapsing like a crushed can?
I have an appointment with Dr. Hayes next week. Should I wait, or should I ask about my symptoms before then? I never know. Honestly, I'm hesitant to bring it up with Lita, because she will schedule me for more medical tests and appointments right away.
In the meantime, I will watch more cable to take my mind off things, eat some leftover cake, and admire how even something as pedestrian as Crystal Light can taste really good when taken in wafer-thin glass stemware.
Labels: Brian, chocolate, cooking, Dr. Hayes, hair, hip, Lita, Lori, nausea, Robyn, shower curtain, walker, wedding
Monday, February 06, 2006
I Am Not a Ragdoll (or, Use the slide board, for the love of God!)
On floor 6A of the hospital I underwent ten sessions of radiation, any number of tests including X-rays and MRIs, and a liver biopsy, which were all terrible in their own way, but I'm going to spend a little time talking about transportation of people with hip fractures.
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
I know I've mentioned the unbearable, excruciating pain. They had to prescribe liquid morphine so that I could take something to make being moved bearable. There was also some kind of intravenous thing they were giving me that put me into a twilight state that was blessedly numbing. What they do to move a patient onto the transport table is that they get four to six people to grab the extra sheet under the patient (called the "draw sheet"). Everybody grabs an edge of the sheet and then they try to coordinate efforts and heave on the count of three. I found this method to be invariably awful.
On one of the occasions when I was to be moved, I started to cry and somebody promised that a "slide board," which is a slippery body-length board which the patient and draw sheet can be slid over, would make everything better. When the nurses and assistants and orderlies used the slide board, it worked amazingly well. There was no friction. My legs moved at the same time as my hips which moved at the same time as my upper torso...Unbelievable! The people in radiation were good at moving patients without causing any kind of pain (they're used to dealing with people who might have broken spinal things), but for the nursing staff on 6A to do it was amazing. I begged them to use it every time, but there were one or two people who insisted it didn't work or didn't make things any easier. The last example of this was the "kindly" man who directed my transfer when I had to go get my liver biopsied.
John was leaving to go back to Chattanooga, and I was already very sad about that. I don't see my brother often, and when he made plans to come and visit me in Detroit, I'm sure he didn't intend to spend the time visiting the hospital and packing books in my apartment. He looked at me funny when I said I was sorry his trip wasn't better.
Then, when the person directing my transfer made no moves to use the slideboard, I lost it and began sobbing uncontrollably, which never helps with the pain issue. "Now you have to relax," I was told. "It makes it worse if you don't relax."
What makes it worse, a**h***, is being told to f****** relax when you're about to heave and plop me onto a table, while telling me that if it hurts, it's somehow my fault.
Being moved was awful. I cried long after the pain subsided, though. I sat in the surgical waiting/recovery area and sobbed. Everything was awful. I hurt; John was leaving; I was frightened of the biopsy.
I was even more frightened when I found out that this is not something they knock you out for. It was an ultrasound-guided procedure, and I guess they needed me conscious so that they could tell me to not inhale at a certain point, since they insert the biopsy needle in between a couple of ribs.
That's right. They stab you in the chest while you are conscious, and ask you to please not squirm around as they're digging for the right spot.
"Don't worry," the anesthesiologist told me when I appeared apprehensive. "We'll give you a fentanyl drip and you won't feel much discomfort at all. He was not happy when I told him I was already on a fentanyl patch...I guess either he gave me something completely different or reduced the dosage, and the biopsy hurt like hell.
I will never again submit to such a procedure. They'd best not plan anything involving stabbing and searching unless I am totally unconcious for the procedure, because I will resist to the utmost of my ability, particularly if they try to claim that I "won't feel a thing!"
Liars.
They had to try separating my ribs twice, because the first time they jabbed, the needle bounced off. Then, after more careful poking and prodding with the fingers, they jabbed me in a gap between two ribs and inserted. They told me internal organs don't have nerve endings, so I shouldn't feel pain, but I swear I could feel the resistance as the needle encountered different kinds of tissue. So I experienced pain from the initial stab wound and knew exactly when it encountered the liver. I could feel it, and they had to work the needle around a bit to find the "right" spot indicated by the ultrasound.
After it was over and I was back in my room, the radiation team came to get me, but I refused to go. I'd had it; I didn't want to be moved any more, and I exercised my right as a patient to refuse treatment (they did make up for it later).
The next day, the doctor and his accompanying doctorlets were shocked to find out that the biopsy was very painful and that my chest still hurt where the needle went in. To his credit, the doctor was very concerned that I seemed to have anxiety about being seen by them, and that they weren't really able to do much to help me. I said what would help would be if they could always use the slide board to move me, so he agreed to write it as an order in my chart. Being moved was much better after that; I no longer dreaded being moved, I didn't have to take the liquid morphine as frequently, and I started having some positive feelings about the doctor and his interns.
Also, I stopped feeling shy about being moved with the slideboard. I vigilantly reminded people that it was there, and that they were to use it or I wasn't going wherever they wanted to take me.
To be continued...
Labels: biopsy, doctorlets, fentanyl, fracture, hip, hospital, John, liver, morphine, MRI, radiation, slide board, x-rays
Saturday, February 04, 2006
Admission: aren't hospitals supposed to make you feel better?
Brian contacted Lita to let her know what was going on and that getting to my radiation appointments was going to be a problem. She wanted to get me admitted to the care of radiation oncology, but to do that I'd need to come through the Emergency Room at U of M since the prospect of doing any normal kind of transportation was out of the question.
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
The trouble with my Westland apartment is that Westland is smack dab in the middle of Oakwood hospital territory. Local ambulances were going to want to take me somewhere nearby. EMS people who normally deliver to U of M are not going to want to travel all the way to Westland to pick somebody up. After no small amount of calling different EMS companies, Brian found one that was willing to go out of the way.
The EMS people came and discussed how to get me out of the apartment, and ended up getting help from the local fire department. The trick was going to be moving me over onto the body board, which didn't quite fit around the corner from the bedroom to the hallway, so they were going to have to tilt it sideways. (They did a draft run before loading me up.) The other problem was that I was completely unable to scootch myself over from the bed to the board, so they were going to have to manhandle me over. There was some discussion about whether or not to just take the sheets, which caused me to panic unreasonably since I love those sheets, which have a very high thread count. Finally I think they got a sheet of their own and jiggled me on one side then the other (not pleasant), and then moved me on the heave of three, which was awful, I saw stars, and whimpered from the agony.
Agony. It's a word I will probably use a lot. I think it might come across as hyperbole, but I do not exaggerate.
Being tilted sideways was not only painful, but it was frightening as well. I was strapped down fairly well, but couldn't help worrying that I would fall off the board. The EMS people tried fairly hard to keep me level on the stairs, which I appreciated, and when we got outside they were able to move me to a stretcher. It was snowing, and I thought of the poem recited by Joy Gresham in Shadowlands where she talks about soldiers seeing "..with unwounded eye/For once a gentle thing/Fall from the sky."
In the emergency van they hooked me up, loaded me with drugs to keep me from feeling too much during the trip, and took me to Ann Arbor.
I think I was probably in the Emergency area for a long time, but I don't really know. What I remember most is having to go to be X-rayed, where I felt that the technicians wanted to cause me unreasonable pain. In order to get good films of my hip, they tried to do a "through-shot" which involved lifting one leg and trying to take the X-ray under the leg. Brian had to help hold the leg up, since I just couldn't do it. Then they decided that wasn't good enough and insisted I be turned on my side. I insisted they not do it, but I lost out. When they turned me, I actually screamed. I decided X-rays were bad, tests were bad, and I didn't want to ever have any more. Moving to and from the X-ray table and the transport gurney were also bad. It seems to be impossible for four to six people to keep legs and hips and shoulders and everything else lined up while moving a body. To somebody with a broken pelvis, this means that being moved is going to cause hideous pain.
After deciding, "yup, she has a broken pelvis" and "yup, she can't get around without severe assistance" and "yup, her vitals are a bit screwey and need to be watched," I was admitted to the hospital proper. At this point, more tests were warranted since I had abdominal tenderness, and the doctors were concerned I might be in the midst of some kind of spleen/gallbladder issue, so they wanted to send me down for an ultrasound, at which point I began to cry, which hurt my hip.
The nurse was livid, and told me I didn't have to go if I didn't want to. She told the doctors so.
I don't have to go? Cool! So I refused to let them transport me--which I had already decided was evil and unbearably painful, what with being tossed around like a sack of potatoes--for something I wasn't convinced I had.
So the doctors came to me and said the test was vitally important, and they had a portable scanner they could use.
If they had a portable scanner, why couldn't they propose using that on someone who finds moving to be insupportibly agonizing? Grrrrr... Incidentally, when they did bring the portable scanner (which the technicians complained about no end--apparently it doesn't do everything automatically like their shiny new stationary equipment down in the ultrasound area; poor babies), they had another stop on my floor anyway.
Having the test required no food or drink, which led to my next lesson in Life in the Hospital: shift changes can result in some incredible stupidity.
To be continued...
Labels: Brian, EMS, hip, hospital, Lita, radiation, ultrasound, Westland, x-rays
Thursday, February 02, 2006
Phew; where to begin?
So much has happened in the time since my last post. I regret not having been able to chronicle things as they occurred. At this point I think most of the three or so people who read this blog are up to date, but I will try to reconstruct events (to the best of my ability) after the fact.
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
After my less-than-delightful news about the cause of my joint pain (which just had to be delivered by the incredibly condescending doctor whom I have since given several bad ratings in a mail survey sent to me by Oakwood Westland Family Practice), I intended to soldier on and go about my business. I contacted the University of Michigan Cancer Center, and was told that I would have to supply them with all of the conceivable medical records relating to my initial cancer diagnosis. Slides, mammograms, X-rays, scans, pathology reports, everything.
I was unable to do much of anything besides make phone calls; Brian did most of the collecting. He went to various hospitals and gathered piles of films and scans and CDs. He tried looking at them too, but to a lay person they don't make much sense. The Cancer Center called and said I had an appointment with Dr. Daniel Hayes on November 29. I met the doctor and Lita, his nurse practitioner who both seemed very kind and yet somewhat disquieting. Nobody asked the really dangerous questions, and nobody seemed inclined to provide answers to what remained unasked: how bad is it? How long do I have? What's the prognosis? Will I get better?
What they did do is start setting up appointments like gangbusters. I was to come back the next day to meet with the orthopedic surgeon to find out if surgery would be required for my hip. I was to have the first of my monthly infusions of a bone-strengthening drug and the first injection of the pellet which has by now completely shut down my ovaries (there will not be the pitter-patter of little feet in my future unless the little feet are attached to a puppy), and I was to meet with the radiation oncologist to get "measured" for the radiation treatments.
The next day I was back at the medical center being wheeled around. Good news from the surgeon: no surgery. It wouldn't really help at this point, and radiation would be of more benefit. The infusion was unpleasant, as they always are; the iv lady couldn't get the iv started and after several failed attempts had to get somebody else to do it. The giant needle used to insert the pellet hurt like a m***** f*****. When they say "You might feel a little sting," be prepared for the PAIN.
Finally I went to meet the radiation oncologist, who was oddly smiley, and the radiation people put me on the table, made some marks on my body, and then said something which sounded disturbingly like, "Ok, now we're going to do the tattoos."
"Is that really necessary?" I said. I'd had it with being stabbed for one day.
It wasn't. They were able to make do with stickers, so I avoided acquiring permanent markings as a sign of my treatment. (I did eventually get something of a radiation burn on some very private areas--and suffered some rather interesting hair loss--but the rash went away and I assume the hair will eventually grow back. If not, I'll forever be able to save money on the kind of bikini wax job people pay good money for.)
Sitting up from the table, I started to feel very ill...I am extremely familiar with nausea and started having that extreme saliva production that heralds the onset of, well, the puking. Somebody grabbed a pink tray for me, and I spewed into that for a moment. Of course the involuntary spasms caused no small amount of agony in my hip.
Later that evening, getting into the car, I had trouble turning on my good foot and accidentally put my full weight on the injured side.
Agony.
Every bump in the road compounded it.
Getting out of the car took forever.
Getting up the steps was one of the hardest and most painful things I've ever done; putting any weight at all on my right leg caused horrible, excruciating pain. Dangling the leg and putting no weight on it caused similar, but different pain. Every time I was able to hoist myself onto the next step, my right foot would tap the step as well, causing more agony. About halfway up the staircase I started to feel like my left hip was snapping apart as well. I don't know how I finally made it; Brian tried to help but lifting under my arms didn't work either. I eventually made it onto the landing and it took about a half an hour to go from the front door to the bathroom. From there I went to bed, where I planned to stay the next day.
Before leaving for work the next morning, Brian made sure I would have pills and water nearby, and that I'd have access to a phone. When I woke up and attempted to get out of bed, I was made painfully aware that I was not going to be able to do so. I couldn't get out of bed, much less cross the hall to go to the bathroom or make it down the stairs to any of my radiation appointments. I called Brian and left a message; Brian called Lita and started planning how to get me admitted to UM Hospital's Emergency Room.
To be continued...
Labels: blog, Brian, Dr. Hayes, hip, infusion, IV, Lita, nausea, Oakwood, radiation, spasms, University of Michigan Cancer Center, Zometa
Tuesday, November 22, 2005
More Questions With No Answers
Will I start to feel better soon?
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Will the new pain medication keep from making me ill so that I don't have to worry that the involuntary muscular spasms from heaving the remnants of last night's dinner and this morning's dose of medication into the sink will cause my hip agonizing pain?
Will I give up trying to go up and down the stairs altogether? I thought about cancelling the PET scan today because everything is so hard. I did actually cancel my first appointment for today and sent my mom instead to pick up a new prescription for oxycontin, which gives me something in common with Rush Limbaugh, who also got people to get his drugs for him. Getting down the stairs and into the car was hard. Luckily the hospital has wheelchairs, but they had to move me several times. First they loaded me into a chair in the scanner trailer (sort of like the one I thought was going to take me to Iowa for weird medical testing in some corn field), then they made me get out of the chair and use the little peoples' room (apparently the isotope collects in the bladder and obscures what they are trying to image), then load me onto a narrow table. After they were done, there was an ER nurse to help move me back onto the wheelchair.
I wonder what they saw in the image to go get a nurse.
I wonder how fragile the damaged bits really are. Brian wonders this, too. He said he looked at the ex-rays today but doesn't really know what it means because nobody has explained them.
The reason people shy away from asking things is that they are afraid of the answers. This I understand.
Labels: Brian, hip, hospital, PET scan, spasms, stairs, wheelchair, x-rays
Thursday, November 17, 2005
Things I have in Common with Grandma
I'm about the same height. We both wear size seven shoes. We both take lots of medications. Both of us are currently having some trouble getting around, and neither of us is going to be completing our Olympic floor exercise routine any time soon. I think I inherited Grandma's forehead. We both really dislike physical therapy. I collect dolls like Grandma does. And I fully confess I got the idea of decorating my Christmas tree in white and gold from Grandma, who did it first.
I have a broken hip, now, too.
My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.
I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.
"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.
After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)
There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.
It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.
I have a broken hip, now, too.
My fall the other day put a fracture in one of the weakened areas of my pelvis. I called my pain management/physical medicine doctor (Dr. Nadjarian) this morning, who stopped short of calling me an idiot and insisted I come in for ex-rays at the emergency center that's downstairs from his office. He told me to call a cab.
I was leery, but the cab dude turned out to be very nice. He helped me to the car and turned out to be a huge proponent of librarians. In fact, he used to have a job selling books to librarians. "Those librarians can be crazy to hang out with," he said. "They get pretty wild." I commented that I think librarians tend to feel compelled to rebel against the stereotype.
"It's true," he agreed, then went on an impassioned diatribe about how libraries are not sanctified spaces of higher learning any more and he gets so angry when he sees "these kids today" yakking on their cell phones at the library. I hear ya, mister.
After a brief and confused trip upstairs, I was made to understand that I should check in at the emergency desk downstairs to be evaluated by the ER doctor. At this point Brian surprised me by showing up at the medical center; when he got my message he told work he was leaving to go to the hospital...I'm not too sure that is going to bode well for his job, but I was glad he was there with me. The ER doctor moved my leg in various directions and observed my grimace of pain and sharp intake of breath in a very clinical fashion. Then they sent me for ex-rays. (The radiology people commented they could still see the barium in my system from the CT scans.)
There probably isn't much that can be done surgically to address the fracture; it's not the kind of injury that pins or false joints can repair. Unlike Grandma, I do not need a hip replacement. They gave me crutches to walk with, advised me to keep my weight off of it, and Dr. Nadjarian said he would call UM and try to set something up with an orthopedic specialist there since I'm going to be transferring my oncology to UM anyway.
It looks like I will be spending some more time at home for a while. I just got cable and will be able to watch Trading Spaces just like I get to do at Grandma's house.
Labels: barium, Brian, Dr. Nadjarian, fracture, Grandma, hip, physical therapy, University of Michigan Cancer Center, x-rays
Wednesday, November 16, 2005
If Janet Falls in the Forest...
On my way to the car this morning, my foot got caught on my other pantleg or my shoe or something. What would ordinarily have been a bobble (that's a technical term used all the time by commentators of olympic gymnastics) resulted in a split second of thinking I would recover, and then the disappointing reality of me slowly toppling over like old growth, but landing on concrete instead of rotted leaves, moss and lichens. My hip was cushioned by a purse filled with electronics and pain medications that don't work very well. The can of caffeinated diet beverage (with lime) went rolling down the walkway where I was supposed to be headed. Searing pain in my hip, and oh look...there's blood on my hand. It's glossy and very bright.
I lay there uselessly whimpering for a moment, and an elderly neighbor came out to ask if there was anything she could do. There wasn't much she could help with; she is recovering from surgery and I discovered I could not put weight on my right leg. She took my purse and folder and wayward can into the building, and when her daughter and some other guy (brother? Elderly son-in-law?) showed up, they suggested calling maintenance and filling out a report that I fell.
I didn't want to fill out reports. It took me ten minutes to get back into the door; I just wanted to go back upstairs and keep from passing out.
The maintenance guy who arrived was able to get me up the stairs by having me put my arm around his neck. At the top I started to faint and the others wheeled the office chair by the table out for me to sit in. Then they wheeled me back in and left me with my cell phone in my pocket, locking the door as they went out.
I have managed to get myself into the sofa where I will be spending the remainder of my day.
I lay there uselessly whimpering for a moment, and an elderly neighbor came out to ask if there was anything she could do. There wasn't much she could help with; she is recovering from surgery and I discovered I could not put weight on my right leg. She took my purse and folder and wayward can into the building, and when her daughter and some other guy (brother? Elderly son-in-law?) showed up, they suggested calling maintenance and filling out a report that I fell.
I didn't want to fill out reports. It took me ten minutes to get back into the door; I just wanted to go back upstairs and keep from passing out.
The maintenance guy who arrived was able to get me up the stairs by having me put my arm around his neck. At the top I started to faint and the others wheeled the office chair by the table out for me to sit in. Then they wheeled me back in and left me with my cell phone in my pocket, locking the door as they went out.
I have managed to get myself into the sofa where I will be spending the remainder of my day.
Friday, November 11, 2005
Officially Differently-Abled
I went to see Dr. Coello today with my mom, who insisted his hands weren't as cold as I claimed they were, however she didn't have them prodding her lymph nodes. I had told him over the phone that I was interested in seeking care from the University of Michigan Health System, and he agreed it would be a good idea, particularly since research institutions like U of M or Wayne State can offer treatments that regular oncologists don't.
He said a good option for me might be a bone marrow transplant. Chemotherapy works by destroying fast-growing cells, since cancer cells are among those that grow the fastest. However, so do cells in the hair follicles, stomach lining, and bone marrow. If the treatment is too severe, it can kill off a patient's bone marrow, which is generally not a good thing, since it is needed to produce new blood cells. So what they can do is harvest the patient's bone marrow, do a more powerful chemo treatment than they'd be able to do otherwise, and then reinject the harvested marrow after the chemo has been completed.
He said I would be a good candidate for this procedure (since I'm young and generally healthy, except for, you know, having cancer) and he would contact the U of M Cancer Center immediately to send them his records and impress upon them how things need to move quickly. I hope to be able to see someone next week. Wherever I go, Dr. Coello said that chemo treatments would most likely relieve my pain in as little as 2 to 3 weeks. I am very much looking forward to that, although in the meantime I did ask for a form to get a handicapped sticker from the Secretary of State's office, and my library director and associate director arranged a handicapped permit for my car that will allow me to park by the library loading dock. I'm officially differently-abled! I'm handicapable!
I will be slightly embarrassed to tell the oncologist assigned to me by my new primary care office that I will actually be heading elsewhere, but if he's professional, he won't mind my seeking care that I'm comfortable with.
What I wonder is, what do they do with the bone marrow once they've sucked it out and before they squirt it back it? Is it kept in jiggling piles on petri dishes? Do they load it into tubes to be extruded back into place? Do they use little tiny turkey basters to suck it up, freeze it, then let it thaw and squeeze it back in? Do they ever get the samples mixed up and could I end up with the bone marrow of an NBA draft pick? Will it improve my game? Medical science contains so many mysteries.
He said a good option for me might be a bone marrow transplant. Chemotherapy works by destroying fast-growing cells, since cancer cells are among those that grow the fastest. However, so do cells in the hair follicles, stomach lining, and bone marrow. If the treatment is too severe, it can kill off a patient's bone marrow, which is generally not a good thing, since it is needed to produce new blood cells. So what they can do is harvest the patient's bone marrow, do a more powerful chemo treatment than they'd be able to do otherwise, and then reinject the harvested marrow after the chemo has been completed.
He said I would be a good candidate for this procedure (since I'm young and generally healthy, except for, you know, having cancer) and he would contact the U of M Cancer Center immediately to send them his records and impress upon them how things need to move quickly. I hope to be able to see someone next week. Wherever I go, Dr. Coello said that chemo treatments would most likely relieve my pain in as little as 2 to 3 weeks. I am very much looking forward to that, although in the meantime I did ask for a form to get a handicapped sticker from the Secretary of State's office, and my library director and associate director arranged a handicapped permit for my car that will allow me to park by the library loading dock. I'm officially differently-abled! I'm handicapable!
I will be slightly embarrassed to tell the oncologist assigned to me by my new primary care office that I will actually be heading elsewhere, but if he's professional, he won't mind my seeking care that I'm comfortable with.
What I wonder is, what do they do with the bone marrow once they've sucked it out and before they squirt it back it? Is it kept in jiggling piles on petri dishes? Do they load it into tubes to be extruded back into place? Do they use little tiny turkey basters to suck it up, freeze it, then let it thaw and squeeze it back in? Do they ever get the samples mixed up and could I end up with the bone marrow of an NBA draft pick? Will it improve my game? Medical science contains so many mysteries.
Labels: bone marrow transplant, chemo, Dr. Coello, handicapped, hip, University of Michigan Cancer Center
Wednesday, October 26, 2005
F*CK Insurance: a long, boring rant nobody wants to read
Firstly, I am honestly grateful that I even have health insurance, don't get me wrong. If I didn't have reasonably good health coverage, I would not be able to pay my bills and would probably have ended up moving back in with Mom and Skippy, who, while they love me--and I them, would drive me completely stark raving bonkers within a week.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
I was notified in mid-September that the hospital with which my primary care doctor's office was affiliated, has decided to pull out of my insurance plan, which meant that I was going to have to choose a new primary care physician. I was not able to act on matters immediately, what with jury duty, trips, a conference, and generally being overwhelmed at how difficult it is to get things done when walking is so hard. Finally the insurance company indicated I would have to select someone by October 9. Not a problem, I thought. I went to the M-Care website and selected a PCP who is affiliated with the same health system as the doctor I'm seeing for my hip. A wise move, I thought.
My first visit to that office, already described here, was miserable. I ended up getting no help and was instead chastised for not having a health history on file with them. And given another prescription for an arthritis medication. I filled the prescription, then stuck it in one of the medicine cabinets at home where it will sit, unused.
A week later I decided it would be a good idea to get treatment for a nagging urinary tract infection, so I called and requested a same-day appointment. This time I saw a physician's assistant. This time the person examining me seemed interested and concerned about my symptoms. This time (oh how novel) he seemed to be troubled by chest pain in a patient who has a history of breast cancer.
"Do you have bone mets?" he asked.
This is not the question I really wanted to think about. I don't have an answer, and was afraid to even think it. Breast cancer, when it metastasises, often shows up in the bones, causing bone and joint pain.
"When was your last bone scan?" he wanted to know.
My last bone scan was done before my surgery, I think in October 2003. "I've had Xrays," I said. Maybe Xrays are magically good enough.
He gave me a prescription and instructions to call the hospital for a bone scan, which I agreed to do. He also wanted to know if I was going to be seeing an oncologist. At this point I got a little upset, because I had been trying to call this new doctor's office to get a referral to see Dr. Coello, my oncologist.
When you call the main number, you are told to press 2 to speak to the referral coordinator. Well, when you press 2, you don't actually get to speak to the referral coordinator. You hear a recording which says for all new and ongoing referrals, to hang up and dial the main number, then press 5 to leave a message for a physician. So I hung up, dialed the main number, pressed five, and when I tried to explain to the receptionist that I was having trouble getting a referral, she said, "Hold on," and then transferred my call. She transferred me to the referral coordinator's line, where I got to hear the message instructing me to hang up and dial the main number.
Lather, rinse, repeat.
I finally spoke to the receptionist and explained that transferring me wasn't helping, so she said, "Let me take a message and I'll give it to the referral coordinator." I am unconvinced that it went anywhere.
When I described this to the PAC seeing me that day, he got really disgusted and said that sort of thing shouldn't happen. He also told me that I would not be able to get a referral to see the person I have been seeing for the last two years, because Oakwood has oncologists on staff. My choices are:
- find a different PCP who is part of the same network as my current oncologist
- find a totally new oncologist who doesn't know me
- pay exorbitantly to continue seeing someone without authorization; hope that it's not too expensive
Friday I went to see Dr. Coello, and when the lady at the front desk asked me for my referral, I completely lost it. I haltingly told her that I had been able to get one, and spent the next ten minutes weeping in their waiting room. They decided to let me see the doctor and wrangle the payment issue later. When I told him about the insurance issue, he was annoyed, but reassured me that his care of me was more or less a technicality now, since the chances of anything have spread are so remote as to be nearly impossible. He then wanted to know about my hip and chest pain, and suggested a "myotherapist" in Southfield who helped him with sciatic pain a few years ago. It really works, he claimed. It isn't covered by insurance, but it will be like a miracle.
Then he concluded that my chest pain was related to arthritis, and prescribed a coritcosterioid. I felt slightly better over the weekend; although the corticosteroid didn't seem to help with my chest, it made walking a little easier.
Monday as I was driving to work, I started having difficulty breathing normally. I can not take deep breaths because of the chest pain. I called and left a message for Dr. Coello. After looking at several alarming websites about potential causes of chest pain and shortness of breath (congenital heart failure, or maybe asthma. Maybe a blood clot. Or maybe severe anxiety), I called the primary care place to come in to see someone again, rather than waiting for the appointment which was scheduled for Tuesday.
I was given an appointment with the doctor I saw the first time I went there. As I was sitting in the waiting room, I noticed that well over half the patients consisted of unwed teen mothers and pregnant fifteen year olds.
The doctor was surprised I was still in pain and insisted it was musculo-skeletal. She listened to my lungs and got irked that I would not take deep breaths. She wanted to know why my paperwork had not been transferred yet, and told me that she couldn't do anything. "I am here only to help those people with sore throats and urinary tract infections and things like that they'd go to the emergency room for."
Silly me. Chest pain and shortness of breath is obviously not an emergency condition.
So I asked what I can do about "musculoskeletal pain" if anti-inflammatories have not helped. "Are you just going to prescribe another arthritis medication that doesn't work?" She came back with a prescription for Tylenol 3 (it does help with my hip, but not so much for the chest pain) and spent the last five minutes of my appointment repeatedly telling me to transfer my paperwork, keep my appointments, and see one of the doctors who is going to be at this facility longer than she will.
"Do you understand? Do you understand me?"
Good god. Don't speak to me like I'm an idiot; I comprehend that you are a patronizing [insert derogatory term here], have no interest in or ability to help me, and coming to this office at all is a complete waste of my time. These people are more concerned about paperwork than in dealing with somebody who has current problems. I understand wanting a health history, but how does the fact that you don't have information about every bladder infection I've ever had keep you from attempting to address what is wrong now?
Yesterday I got a call from Dr. Coello, who is very concerned that the medication he prescribed didn't help.He was surprised that the insurance switch has already happened; nobody told him on Friday. He wants to help me find an oncologist in this area and asked me to read off some names for him. It is important that I get a bone scan.
I am rather freaked out about the specialist being worried.
He is going to send his records to the PAC who prescribed my upcoming bone scan; I'm not sure I'll necessarily be going back there. They're used to dealing with knocked-up teenagers and wheezy old people; I don't want to go there EVER AGAIN.
Tomorrow I will ask the pain dude in Canton if he could recommend any of the people at his facility, or if he's familiar or could ask around about any of the oncologists on my list.
Also, F*CK Oakwood. My other primary care physician's office didn't refuse to give me referrals to out-of-network doctors. That's probably why they're no longer part of my bloody insurance plan.
Labels: Bon Secours, bone scan, conference, Dr. Coello, hip, hospital, insurance, jury duty, M-Care, metastasis, Oakwood, referrals, x-rays
