Janet's Blog

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.

Labels: Abraxane, Aunt Barb, Avastin, Brian, chemo, Cleveland, doctorlets, Dr. Hayes, Grandma, hip, Lita, liver, morphine, nausea, Neupogen, physical therapy, radiation, sick days, Zometa

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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...

Labels: biopsy, doctorlets, fentanyl, fracture, hip, hospital, John, liver, morphine, MRI, radiation, slide board, x-rays

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The attending physician on floor 6A was usually preceeded by one of his interns, who would come to ask questions, take vitals, poke and prod, and ask me to breathe so he could listen with a stethescope. Then the full-fledged doctor would show up, with a group of two or more of his interns (I called them "doctorlets"), and repeat the process, which never elicited any new or exciting information. The typical questions were always: "How's your pain?" and "Any shortness of breath?" or "How are your bowels?" or "Much of an appetite?"

They would provide medication based on my answers, which gradually resulted in my taking, in addition to the patch I already had, an increased dosage on the patch, pills for pain (a narcotic and ibuprofen), pills for muscle spasms, muscle relaxing pills, pills for promoting bowel movements, pills for softening stools, pills for stomach health, pills for sleeping, pills for depressions, pills for anxiety, a powder mixed with liquid for--well, they were never able to really clarify what the Nutri-phos is for (I think it might be something like pedialyte)--either an injection of a very powerful opiate or liquid morphine taken orally when I was to be moved, and an incredibly painful shot for preventing blood clots that felt like a bee sting and which I decided might have consisted of concentrated bee venom. After having been immobile for several weeks and on various narcotic products, my digestive system was seriously backed up, which was leading to the abdominal pain and spleen/gallbladder symptoms. So they decided to step up the cleansing of the alimentary canal and also prescribed things intended to flush the colon from every conceivable direction. Yes. You know what I'm talking about. Mercifully by this time I had a private room.

Naturally, I came to dread visits by the attending and his little doctorlets. They were torturing me. Every time they came to visit, I found myself getting nauseous and vomit-y. When my dad and Susan came into town, they took over talking to the doctors when they could (the timing of their visits meant that sometimes they'd miss him and his posse on rounds), and would even leave the room to talk about topics that seemed to turn me green.

I was not in a good way.

When I got moved to my private room, I might have looked forward to getting more individual attention and care from the nursing staff. I now know that this does not necessarily happen.

One of the things the doctors told me is that I needed to drink as much as I could. Take in fluids at all times. Any fluids. Juice, water, milk, anything. I didn't seem to be getting any water, although they did have me on an iv. Also, food is important to get the bowels moving. I needed to keep my digestion working, but I didn't seem to be getting any food, either.

I was actually getting kind of hungry, which at that point meant that I was starving, since my appetite had generally been quite poor, but my breakfast never arrived. I assumed this had something to do with having been moved. Maybe my breakfast got delivered to the other room? By lunchtime I figured things would be straightened out, but again was kept waiting. They had been quite prompt with the food delivery; are they just slower on this hallway, or something? The doctors came, asking about my appetite, and they went. I complained I hadn't gotten any food, and they said they'd make sure the order was there to get anything I wanted.

A few hours later I was ready to chew my arm off.

I called the nurse.

"Um, am I supposed to get a lunch? I've been waiting and I'm really hungry."

"Oh, your orders say no food or water due to a test."

"What test?" I had been told no food or water for the untrasound, but that had been done at six o'clock the previous day.

She flipped through the chart, and found it. "Ultrasound," she said. "You need to not have food or water before the test."

When I pointed out that the test had already occurred--"Or is this another one?" I asked sarcastically--she looked a little bit disconcerted and went to go check.

A little bit later, somebody from food service showed up with a tray. Hospital food is not exciting, nor is it particularly appetizing, but I felt myself beginning to drool. Food, glorious food!

I beheld my tray. It consisted of clear broth, apple juice, and a plate of air.

I laughed hysterically. Clear liquid diet! This is just great...so I hit the nurse call light again and told the person who answered that my plate of air really wasn't the lunch I had been hoping for. "Have you been eating?" They wanted to know. "Usually when you're not eating they start you on clear liquids then..."

Yes, yes. I know all that. But I wasn't on a restricted diet. It was only for that one test, could I please have something normal, instead of something imaginary? He went to go ask the nurse if it was ok. I think she was embarrassed, because they agreed to get anything I wanted. My toasted bagel with cream cheese and container of chocolate milk were delicious.

This was not the only time different shifts of the nursing staff had some confusion about changes in my orders; I learned that as a patient, I was going to have to keep on top of things and let them know. My dad and Susan also helped keep a running list of questions to ask the doctors, which helped immensely. It's also good to know that you can question anything, and you do have the right to refuse the bee-sting shots if you just can't stand them any more, or the plate of air if you want something tastier.

To be continued...

Labels: anxiety, Dad, doctorlets, food, hospital, morphine, nausea, spasms, Susan G. Komen

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