Janet's Blog

Ok, so I was wrong about the doom and gloom and my chemo seems to be doing what it's supposed to. My tumor markers are holding steady. My scans seem to indicate that my bones are mostly stable (the bone scan shows possible increased "uptake" but the scan itself doesn't show the disease, it shows the disease being attacked--they call this a "flare effect" and is not cause for panic) and the tumors in my liver are reduced both in size and number (one went from 7cm to 4.5cm). I have some tiny spots in my lungs that don't appear to be doing anything, and there may or may not be some pleural thickening--the CT slices do not necessarily exactly line up from scan to scan, which is possibly why sometimes the couple of lung spots show up and sometimes they don't.

The Mini-Doom

The puzzling thing is why, given the reduction in size and number of my liver blobs, are my liver function tests not improved? The analysis states that my liver is irregular in shape, possibly due to carrying around multiple blobs of unholy cell mutantage, or it could be consistent with cirrhosis.

Huh?

Also, my spleen is about three times bigger than it should be, which would not be inconsistent with a liver that's having a tough time. No wonder I feel bloaty. I asked Dr. Hayes, "How big should my spleen BE?" He held up his fist to demonstrate. My spleen is currently 14cm, so I'm walking around with the equivalent of having eaten two large apples at all times in my belly, not to mention the extra mass in my liver. They are testing to rule out hepatitis. If it's not that, I don't know what else they can do. Maybe there's a crucial blockage somewhere. They might refer me to a liver specialist.

Brian and I went to a lecture last night about treating cancer that has metastasized to the liver, and I left feeling very bummed because I have too much cancer for any of the treatments to be considered viable. What else is a liver specialist going to be able to do for me?

The Annoyance

Also, no news on the back pain. I am to try taking ibuprofen and to avoid hopping on the trapeze.

Finally, the morning ickiness is probably due to GERD and Lita says I can increase my prilosec and/or keep soda crackers to pop in the morning if I'm feeling not quite right.

Labels: bone scan, Brian, CT scan, Dr. Hayes, Lita, liver, lungs, spleen

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It's not really "gloom and doom" but it is uncharacteristically non-optimistic.

My back pain has continued past the time of undue stress. Instead of feeling like a muscle got pulled on the right from wrestling with a 20 pound puppy who doesn't want his feet wiped off, or a stress spasm on the left from having too much to do and too little time, this goes down the center of my back right below the shoulder blades. I start out the day just fine, but in the evening the effort of holding myself upright takes its toll and I have to lie down.

I totally have no expertise in reading a bone scan, but at my scan on Thursday I imagined that my spine was more "lit up" than usual. I rather expect Dr. Hayes (or Lita, since the man is busy and may be at some conference or other) to tell me I am to be switched to another type of chemo.

If not, I need to ask why not. I'm just not convinced this one is working. Which is a shame, really, since except for the back pain (and some heartburny-type issues for which I am taking prilosec) I feel pretty good. Well, except for feeling routinely overheated in the mornings before my alarm goes off, and feeling somewhat icky before sitting up--it usually clears up after I'm upright for a while.

Maybe I'm just gearing up to expect the worst so that when I get to my appointment I will be pleasantly surprised that my tumor markers are holding steady and the back pain is likely to be from the exertion of physical therapy.

I doubt it.

Labels: bone scan, chemo, Dr. Hayes, hot flash, Lita

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I think people had a good time. There were many foods. Grandma (who actually expressed shock that I could cook a turkey) would have been proud of the spread that got laid out.

Everything got done--I even managed to finish some gift knitting while the turkey was in the oven. Well, almost everything. I still need to take care of sending the remote gifts. Oh well.

My back spasms have calmed down and my flute playing at church went reasonably well. I can't say it was great, but nobody noticed anything amiss.

We are now stripping wallpaper from the kitchen walls. Sadly, there will not be enough time to totally strip and paint, but I don't care. I'm relieved to see the paisley coming off in stretchy vinyl sheets and lying in tatters on the kitchen floor. Whoever decorated this place before we moved in was demented and color-blind.

I had a CT scan on the 26th and an upcoming bone scan this Thursday; presumably I will get my results January 8. I have also started physical therapy again. I am sore, but in a way that is probably good. I'd like to be able to comfortably tie my shoes and lift my legs into the car without having to use my hands to do it. Today I had a therapist throwing a foam ball at me as I balanced on a teetering board. I'm not entirely convinced this will help with my goals, but I'm getting better at catching a foam ball while balancing on a teetering board.

Happy New Year! Pop on over for some spinach dip and sparkling grape juice, if you like. We might be awake long enough to watch the ball drop.

Labels: bone scan, Christmas, condominium, CT scan, flute, Grandma, physical therapy, wallpaper

2 comments

I thought my news to report would be about scan results. It was getting time to post something; no fewer than four individual people (not including Brian) contacted me wanting to know how my scans went.

The bone scan was the same as last time, one blobule in the liver might be larger. The chest scan shows two teensy nodules which may be new, or may have been missed by previous scans. This past Tuesday it was decided that I would switch chemotherapies.

This past Tuesday was NOT my usual day to see Lita and Dr. Hayes. The reason I went in on what would have been a day at work, is that over the weekend I started experiencing rear-endal discomfort. Again. This time it was decidedly odd; it felt like my muscles were spasming and just couldn't relax. Oh, and last Thursday at work I peed a blood clot. And again on Sunday. Then Monday night my butt issues became decidedly even more uncomfortable, despite the ibuprofen and the sitz baths.

So Lita asked me to come in to be poked and prodded.

At the appointment (which was at noon), we decided to switch up chemotherapies because it looks like Abraxane just isn't working any more. (A year is not at all a bad run with a chemotherapy drug, so this isn't terrible.) I was offered the choice of Xeloda, which is chemo in pill form--and is purported to not cause hair loss--or Adriamycin, one of the ol' standbys for treating breast cancer, which has a ghastly reputation although Lita claims the side effects aren't that bad given how they will treat me.

I thought about it, and had eyebrows--glorious eyebrows!--briefly in my grasp. I asked for Xeloda. Then Dr. Hayes reconsidered based on the mouth sores Xeloda can cause; such sores can occur at the other end, too, and in light of my recurring discomfort, he doesn't want me to have it.

Then they asked me to go to the emergency room for further evaluation, since ailments of the behind are out of their realm of expertise. Brian and I went to lunch then went back to the ER to go to the hospital.

First we sat in a waiting room for a while. Then they came and took several vials of blood and wanted a urine sample. Then we went and sat in the combined patient/visitor waiting room for a couple of hours. Then I was called and they took us to a room where I changed into a gown. Then the fun began. Periodically technicians would come to take my vitals; I always have to explain the blood pressure issue (right forearm only). I got very thirsty and was not allowed water, although eventually somebody brought me a small cup of ice chips. A doctor came and got detailed information, then, after conferring with Lita, decided more cultures were needed so they would know what kind of exams they could do. So somebody came to access my port and get more blood--those were some of the biggest honkin' vials I've ever seen. Somebody also came with lidocaine gel, which should help soothe the discomfort and not have the icky effects I had with the last tube of cream the ER people gave me (nitroglycerin). After deciding my neutrophil count was too low, the doctor decided on a CT scan, but told me the barium wouldn't be necessary. I gave her two big thumbs up and decided I could bear the agony of the iodine contrast since there was to be no barfium! Woohoo!

About an hour later, a nurse walked in shaking a bottle of barium.

I cried.

Then someone came to try to insert an IV for the contrast. Tried, failed, and had to go get someone else. The man who came next pored over my arm for a while, and concluded he couldn't find a vein, so would have to call someone who has an ultrasound machine that helps find veins. About an hour (and a bottle of barium later) the new technician came by and when informed that I had a port, told me the ultrasound method was best for finding deep veins in the location where my port is, so wouldn't work for me. She did the painful tapping thing on my arm and was able to find a vein in my hand, so I finally got my IV.

In the meantime, the doctor came by again. By this time it was about 9p.m. She explained to me that the barium was necessary after all--or so she had been convinced by the radiologist--because otherwise if there was an abscess (I was pretty sure I didn't have one of THOSE), it wouldn't show up as distinct from any liquid contents of the bowels. She also informed me that since they wanted to be sure the barium had gone all the way through, I'd have to wait until after having a bowel movement before they could do the scan.

"Usually that happens about 3-4 hours after patients drink the barium preparation."

It wasn't enough that I, a patient in the ER with an observed fissure, was going to have to deal with the unpleasant aftereffects of barium knowing it was going to hurt like a mofo coming out, but finding out I was going to be at the hospital until the ridiculously wee hours was the final straw. I had a 9a.m. meeting scheduled for Wednesday. This couldn't be happening.

So we waited. My stomach burbled. We watched tv. Brian went to get himself a candy bar. Finally the nurse came and told me I'd have to provide another urine sample. I suspect it was a ruse to get me to the bathroom, but I can't be sure. In any case, the barium (painfully) did its work, and I got sent for the CT scan.

When the scan was over, the doctor came back to the room and told me her shift ended hours ago and that she was going home, but that I would have to wait 45 more minutes for the CT scan results.

"I can see you're upset," she said. "I can't blame you."

She could SEE I was upset because I had a nasty expression on my face and was a seething pile of misery and impotent rage. If my hand had not been impaired by an IV and my butt hadn't felt so bad, I would have launched out of the bed and throttled her.

She said she had explained my situation to her colleague, had left a prescription for a larger tube of gel, and that she was sorry I had to be there so late.

You and me both, lady.

The other doctor came by with the scan results when I had gotten up to go use the restroom again. I made sure to slam the door as loudly as I could and looked for supplies to pilfer.

There was no abscess. I know my doctors want to do the responsible thing and fully investigate things that could implode in my innards and kill me, but I am not submitting to this kind of marathon-ER thing again. I should have walked out when the barium walked in. We spent over twelve F*cking hours at the ER, and came away with "nope, no abscess" and a damn tube of gel. It was past two when we got home. And because of the lovely effects of drinking two bottles of stuff that insists on leaving your body in the most unpleasant way possible, I was not in bed until about 3:30.

I was so tired and disoriented when I got up this morning at 7 (I needed time to get ready for the day of work I absolutely could not miss--and I actually did make it in time. I deserve a medal) that when I staggered into the bathroom first thing to pee, I got very confused about a sensation of numbness when wiping myself that I just couldn't account for at first.

Until I noticed that I hadn't actually managed to pull down my underwear.

I hate the f*cking ER.

Labels: Abraxane, Adriamycin, baldness, barium, bone scan, Brian, CT scan, Dr. Hayes, fissure, hospital, IV, Lita, liver, lungs, Xeloda

2 comments

I am once again going for scans tomorrow. This is icky for a variety of reasons: first, barium is nasty and careens through the digestive system like a foamy, liquid freight train. I call it "barfium." Secondly: they scheduled my CT scan for 3pm, ensuring that I will be as hungry and cranky as possible. Thirdly: I had my last scan not so long ago and am dismayed that my liver counts and tumor marker counts appear to warrant scans again so soon.

I tried to ask for the kind of barium preparation that is a powder and can be mixed with clear liquid (like water or fruit juice), but Lita was extremely skeptical about whether our equipment is able to detect that particular kind of barium. Who knew that the stuff they make you chug or that they squirt into you might be hardware-specific? I never followed up on this so will be drinking two large cups of berry-flavored foam that weigh five pounds each tomorrow around 2:00.

I hate that my scan was scheduled for the afternoon. I will be able to eat breakfast, but not lunch. I get very cranky (and fatigued and become filled with low blood sugar-induced despair) when I can't eat lunch. If the scan were in the morning, I wouldn't mind because I'm used to fasting over night. As it is, I will get more and more irritated and crabby as the day wears on, and I have already apologized to my mom (who will be accompanying me to the appointment) for the fact that I will probably be very unpleasant company. The bone scan injection is at 4, then I have to come back at 8. To make things even more "convenient," the person who did the scheduling attempted to switch my infusion to noon.

That's right--I get chemo the same day. My appointment was at 9, so I planned to enjoy a muffin and relax at the Canton center, where it's very pleasant, low-key, and Brian and I can watch dvds without being cramped in to a huge assembly line of sick people. Switching the appointment to noon does not make it better. I'd have trouble getting from Canton to the hospital in time, and would completely miss out on the most excellent baked goods. I guess they were thinking that grouping things together would disrupt my day less, but I really don't need my day to be a solid mass of medical procedure, thank you. I'm happy to stagger things. Even the 3-4 hour gap between the injection and the bone scan is ok--it will give me time to go have dinner with my mom (or at least allow her to frantically acquire some chicken nuggets from a drive-thru to stuff into my mouth before she has to strangle me).

Results should be available Thursday morning. I certainly don't want bad news, although more of the same results will be disquieting, too. I don't want to just barely hang on, I want to see improvement. I'd love to have things knocked back to a degree where I could go on another chemo vacation.

Baxter is also going for medical treatment tomorrow. He is having a very special operation. I've tried to tell him that this is the consequence for "marking" the furniture in the living room, but we were going to have him fixed anyway. I have decided he is no longer allowed on the sofa and chair, except by invitation. It can be very disconcerting to have a 15 pound puppy suddenly flying at you from the ottoman, and since he seems to have the idea that the sofa and chair are HIS territory, he needs to be disabused of this notion. So far it's going reasonably well. He keeps trying, but we keep pre-empting his leaps to the sofa and squirting him with water when necessary. Oddly, he's been more pleasant in general since he's not allowed free access to the furniture.

The lesson here is that pets need boundaries. They also need to have their grown-up parts removed for the greater good.

Does anybody know of a really effective pet-odor neutralizer? I've been using one that says it has "enzyme action," but I'm dissatisfied.

Labels: barium, Baxter, bone scan, Brian, CT scan, Lita, mom, tumor marker

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My scans before I left to go on vacation were inconclusive. My tumor markers had blipped up, my liver functions had blipped up, the scans showed possible new activity in the thoracic spine and possibly the dome of the liver, but Dr. Hayes' advice was to wait and see how the next round of blood tests went, since my numbers have blipped up in the past only to blip back down again.

This week the lab screwed up and didn't take all the appropriate vials of blood, so I had to drive to the hospital early this morning to get poked so that Lita can call me with the tumor counts and liver enzyme numbers.

It may be that I am coming to the end of my relationship with Abraxane. If my numbers keep going up, I will get to go through the scans again before next month's appointment with Dr. Hayes.

There are other drugs I might try instead, like Xeloda or Navelbine. I've been on Abraxane for approximately a year, which Dr. Hayes says is about to be expected. If the chemo drugs are only going to be effective for a year, I sure hope they keep crankin' new ones out.

Labels: Abraxane, bone scan, CT scan, Dr. Hayes, Lita, liver, Navelbine, tumor marker, Xeloda

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Just in case anyone is hyperventilating on the edge of his or her seat waiting to hear the results of my scans: nothing is significantly different. According to the reports, there may be "new areas of uptake" on the upper thoracic spine, and the "dome of the liver" might show a difference, but Lita showed me side-by-side comparisons with the scans from three months ago, and it was really hard to see any difference. There are so many blobs in my liver, the possible increase in size of one hardly makes a difference. Dr. Hayes suggested sitting tight for now, rescanning in a few months, and then making a decision whether to continue with Abraxane.

He said being ill from other things--like a horrible butt issue--might cause a false positive. I'm not sure I'm convinced that my fissure could somehow impact a bone scan, but whatever.

Also, Lita and Dr. Hayes decided they wanted to look at my butt to laugh and point, I'm sure. I had to curl up sideways on the exam table and I said, "This is the most undignified thing ever." They said they would ask a surgeon they both trust about whether I was on a suitable antibiotic and that I'd skip chemo that week (this was last Tuesday), and then skip the Avastin today and just go with the Abraxane and Zometa. (The nurse was confused and brought out a Neupogen shot, which we never do the day of chemo--to be honest, we hardly do it at all, although that needs to change since I'm sure the reason I was so sick this past year is because I kept weaseling out of having Brian give me the shots--she felt bad because each shot costs $3,000; luckily somebody else in the infusion area wanted it so it didn't go to waste.)

I am happy to report that my butt is feeling much better now, so I am also able to sit on the edge of my seat.

Labels: Abraxane, Avastin, bone scan, Brian, chemo, CT scan, Dr. Hayes, fissure, infusion, Lita, Neupogen

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I got so excited by the Posterior Crisis that I forgot to dwell on my CT scans and the joy and delight that is the barium preparation. I don't know why UM Hospital doesn't use the powder that can be mixed with clear liquids. I've been advised by other people to ask for it; I may try to bargain the next time scans are due.

Bargain? Who am I kidding? I will try to beg and wheedle. And cajole. And whine. And plead.

Anyway, I do not have the results of the scans pertaining to my more serious medical issue, although I do know that the CT scan of the pelvis did not show a horrible problem of the rear endal area.

I have an appointment scheduled for Tuesday morning with Dr. Hayes, which I am absolutely NOT going to be able to make. I have hired a consultant from our library's automation system vendor to come to our library to help look at system codes and database setup things. I have been working towards this for a very long time and feel that I absolutely HAVE to be there.

Am I being ridiculous? Isn't my health more important?

I submit that my sanity is equally important to my physical health. Last year I was ill and depressed and really didn't start to feel "normal" until I went back to work. I've been sidelined in the last several months with stupid immuno-compromised illnesses and now my issue of the area upon which I sit, and want to put it all behind me (pardon). I want work to be normal. I want work to not just be normal, but to be effective. What difference will it make if I have to wait a few days or a week to get scan results? I'll have to deal with the results anyway.

This visit is a two-day thing that will not be repeated any time soon. If I miss it, there's no way to wait two days and do it then, instead. I can't reschedule the consultant's trip. I can't fail to show up one day and expect to have people take my opinions seriously.

I don't have TIME for this cancer crap right now.

Labels: barium, bone scan, CT scan, Dr. Hayes, fissure, library

1 comments

Warning: this is a long, rambling rant. It does not contain sufficient citations/annotations and is somewhat repetitive.

"People who get DCIS are lucky."

Read my archive and then tell me how "lucky" people who get DCIS are. I heard this from my doctors, and I've read it on cancer survivor bulletin boards. People assume DCIS involves less treatment than other types of breast cancer so it must be "easier." I know of people who had their cancer staged higher than mine who had less initial treatment, and probably will not recur--some of whom express envy of people who were staged with DCIS.

One of my bulletin board compatriots, a woman who has metastatic disease, also had DCIS and now has confirmed brain mets.

The tiniest cancer cell is as deadly as any other mass of cancer cells.

"CMF chemo is 'light' and therefore easy."

I felt like I had the flu for six months and gained permanent aversions to certain smells. I can never smell baby shampoo without gagging because my oncology nurse suggested that baby shampoo would help keep my hair from falling out.

Just because I only developed a bald spot and didn't lose all my hair did NOT mean I felt swell and dandy. Having the flu sucks. Having flu symptoms as part of an effort to make you "better" doesn't make the symptoms more fun.

"If you don't have a 'family history' of breast cancer, your risk is lower."

Most people who are diagnosed with breast cancer have no family history. Having a family history can raise an individual's risk--and may be an indicator that there is a genetic component--but that's a completely different kind of statistic and doesn't apply to the population as a whole. Yes, screening of people with a family history is extremely important, but so is screening the majority of the population who will be diagnosed. I've been told many times it's better to catch it "early" (see my remarks about DCIS above), so why are doctors not more interested in catching it early?

"It's not worth screening younger women because of all the 'false positives.' "

I was diagnosed at age 30 and had no "history" of breast cancer that I knew of. My mother, my grandmother never had it; I have no sisters. If I had waited until the appropriate age to have a screening mammogram--and if my family care practice hadn't been on the ball enough to suggest a mammogram to investigate my lump (which, freakishly, turned out to be harmless, although there was cancer there), I'd still be waiting for my screening mammogram.

When I was first diagnosed, I was advised to get a copy of Dr. Susan Love's Breast Book. It is very large and makes an excellent doorstop. She explains the anatomy of the breast as well as anyone can, but this book did not help me because I had doctors who were able to explain things as least as clearly and in fewer words. While I was going through treatment, I encountered an article she wrote (or was interviewed for...I'm too angry and lazy to go look up the citation) in Glamour Magazine wherein she commented that we make too big a deal out of cancer and that many young women are unnecessarily frightened and undergo unnecessary surgery due to a rash breast cancer diagnosis.

Her entire thesis is that those people who might experience a "false positive" are statistically more important than I am.

Well f*ck that.

Recently guidelines for breast MRIs were published that I had hoped would make it easier for younger women to be screened for breast cancer (the difficulty being that young breast tissue tends to be dense and mammograms don't work very well on dense breasts), but the guidelines still state that MRIs are really only appropriate for people with "an increased risk" of breast cancer.

Do you know who is NOT at "increased risk"? PEOPLE WHO HAVE ALREADY HAD BREAST CANCER.

?!

People who are under the age of 35 who have "no family history" but who have an unexplained lump are not at "increased risk." This whole MRI thing would have had me still waiting for my baseline screening.

I don't read Dr. Susan Love's remarks anymore, and I get very angry when I read things of the same flavor...Anyone who suggests to me that statistics are a valid reason to let me go untreated/undiagnosed is not somebody I care to listen to.

"In follow up care, we shouldn't be too quick to run scans and tests."

This is largely to keep costs down, I believe. Scans and scanning equipment are expensive. "False positives" are expensive. Insurance is expensive. It is not good to cause needless emotional trauma to fragile, fragile women.

You know what else is expensive and traumatizing? Spending a damn month in the hospital with a mangled pelvis because it wasn't worth running expensive scans on a "lucky" woman who had DCIS, did "light chemo" was "cured" and has no "family history." I would be very interested to know if anyone has ever calculated the relative cost of treating someone who was not screened early enough to catch a disease before it got really ugly versus the cost of doing a scan that finds what it is looking for so the patient can be treated appropriately. I know my treatments have not been cheap. How much money could have been saved by doing a bone scan months before I had all kinds of other procedures which were unable to verify why I was having hip pain?

"Stage IV people should be treated if they are symptomatic, not before. We shouldn't go looking for disease in remote parts of the body."

I've heard that by the time bone mets are painful, they are very advanced. What's wrong with preventative medicine? Doesn't anybody study whether preventative medicine is cheaper in the long run than treating advanced crises? Wouldn't therapies that prevent bone mets reduce costs for everyone later along the line?

I also have recently read some articles debating the merits of doing routine brain scans on people with stage IV cancer. The current thinking (and I believe my doctor feels this way, too) is that in treating advanced disease, one treats the symptoms and doesn't go looking for trouble. In other words, my doctor probably will not check me for brain mets unless I start having severe neurological symptoms. I did have a brain scan when I was going through my stint of uncontrollable vomiting, but haven't had one since.

I will not have targeted therapy of my liver--and instead will continue systemic treatment--because I feel "fine."

The woman I referred to in the beginning of this post, who was also feeling "fine" until just a day or so ago has just discovered that she has some massive lesions in her brain. She discovered this by undergoing a terrifying seizure, during which she was conscious and could hear her own labored breathing--which she describes as sounding like that of her dying grandmother.

I wonder if I am becoming too complacent with my own treatment.

Maybe it's time to demand some scans. I have to do my part to drive up medical costs for everyone else to save my own, needless ass.

Labels: bone scan, brain scan, DCIS, metastasis, MRI, prevention

1 comments

THIS is how I feel about scans:



I need to change "Hormel Foods" to "Horrible Fluids." I am still suffering the aftereffects of the barfium[sic].

I did get good results, though. I emailed Lita to ask if I was supposed to have been scheduled for a bone scan and if the results of the CT scan were available yet. She left a message informing me that my bone scan had been scheduled for the tenth but was canceled (I suspect because I failed to show up, not having been informed about it), and that the preliminary results were good.

I will get more detailed information Tuesday, but my liver is NOT about to be completely engulfed in horrible cancerous blobs of doom, there is improvement, and it looks like my chemo is still working.

Phew!

Labels: barium, bone scan, CT scan, Lita, liver

1 comments

Blood test results show one tumor marker down (yay!), one blipped up somewhat (boo!) and my liver function tests show some results that are of enough concern to warrant a new battery of scans, including a bone scan and the ever-popular Barium Barrage, or "CT with contrast" (%$#@!).

I contacted Lita to find out about getting a "power port" but changed my mind when speaking to the scheduling people, who indicated that a power port has to go in the chest and cannot be placed in the arm.

For now I am going to have to live with the agonizing jabby-jab-jab of IV placement for the contrast dye.

Also, I absolutely must resume the Neupogen shots, which are for the purpose of boosting white blood cell counts and feeling like one is being stung by a bee without having to go outside or risk exposure to pollen. And a significant portion of my remaining twelve hairs have decided to shuffle off the mortal coil that is my head.

Labels: baldness, barium, blood tests, bone scan, CT scan, hair, IV, Lita, Neupogen, port, tumor marker

0 comments

For a while I've been marking cancerversaries. November 5: my surgery date. November 3: second bone scan and confirmation of metastatic disease. December: hospital stay. I don't think I will be able to forget and keep from feeling unease when late fall rolls around again, but a new marker of passing time is coming up.

February 25 will be Brian and my first wedding anniversary. I confess that when we got married, I was not entirely convinced that I would be seeing an anniversary, but I am thrilled and relieved to comment that my notion of impending doom was silly and that we will be seeing many more anniversaries.

February 14 will be my first Valentine's Day as a married person. April 13 is the anniversary of our first date (at La Shish...Brian rode his Harley for optimum impact). Spring is considered to be a time of renewal and rebirth. Usually this is represented by bunnies, tulips, and Cadbury eggs. I represent it by throwing off the shackles of my wheelchair, walker, and Fentanyl patches, and by celebrating what is good instead of being mired in what's miserable.

Labels: anniversary, bone scan, Brian, cancerversary, fentanyl, hospital, metastasis, motorcycle, surgery, walker, wedding, wheelchair

0 comments

It was nice while it lasted.

I was the first patient Dr. Hayes and Lita tried to treat with just Avastin and Zometa, in the hope that my disease is stable enough to treat without my having to undergo chemotherapy. As mentioned in a previous post, the blood test results from two weeks ago indicated that there could be some tumor activity: one of the markers remained the same, but the other blipped up.

So I went in for my bone scan and CT scan last week, which is always a joy. I was not able to eat during the day because of my evening scan, and by the time I got home I was ravenous and more than a little insane with low-blood-sugar-induced anger. I was angry about being stuck at the hospital with nothing to do for three and a half hours because I wouldn't have had time to get home and back. I was angry about not being able to eat. I was angry about the fact that barium even exists at all and that they can't inject the contrast dye into my port (Lita says now there's a new kind called a "superport" that they can use for injecting the dye...I may consider asking to get mine replaced). I was angry about slow traffic, at the person who honked at me for not turning quickly enough into the Wendy's parking lot, at the slowness of the drive-thru. I was angry at Brian for keeping me company while eating. I was once again angry at barium when it decided to go on its voyage to porcelain heaven--all at once. I was angry at pretty much anything it occurred to me to think of or notice.

I got my results today.

The Good News

My bones appear completely stable. There was no progression of disease in my hip/spine/ribs, and Lita is not at all worried about undue risk of fracture.

What a difference a year makes.

The Bad News

The bad news is that the disease in my liver does show progression, and as of today, both tumor markers were up (the one which had gotten down to 16-point-something is now about 200). I resumed the Abraxane today and have every expectation that those markers will go down again to near-normal levels. If not, we lather, rinse, repeat with some other drug.

Alas, this also does mean I have to resume enduring Neupogen shots. :(

The Freaky News

Within the last year, they've started hearing about some kind of weird bone problem that happens with people on Zometa--in rare cases, part of the jawbone (and only the jawbone) actually dies, which can lead to exposed bone in the mouth.

Yuck.

They have not seen this before because in the past, breast cancer patients with stage IV disease didn't last very long and Zometa didn't exist. Now it does, and there are a lot more people living significantly longer. Lita stressed that this side-effect is rare, but I get a tightness in my chest when I hear people telling me about medical conditions I have a very small chance of experiencing. I've played those odds--several times--and keep on beating 'em. I have been instructed to make my orthodontist aware of the risk so that they can check for my jaw health at my regular appointments.

Great. All this money for braces only to have my lower jaw corrode away or fall off or whatever. That's just swell.

Labels: Abraxane, Avastin, barium, blood tests, bone scan, Brian, chemo, CT scan, Dr. Hayes, hospital, Lita, liver, metastasis, Neupogen, tumor marker, Zometa

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Brian got worried while processing nursing and oncology journals at work, and contacted Lita, who left a message for me to call her back.

My blood tests may warrant new scans after all.

I am seriously considering begging for some alternative to the CT scan, which involves drinking copious amounts of barium, a substance which is also famous for being used to give people enemas. It's nasty. The last time I got so icked out over the prospect of drinking it that I yakked into the waste basket in the doctor's office waiting area. I love it not.

Brian seemed to think Lita will want me to have scans before my next appointment in two weeks. On the one hand, I think one might as well be prompt about treating problems. On the other hand, I wish I didn't know about any of this and could spend the next two weeks feeling brazenly optimistic before the deflating: your break may be over.

I don't even know what she's going to say, but I imagine my tumor markers are creeping up and the wonky liver results are "of concern." Then the scans will show increased tumor activity and there will be some head-scratching over whether or not this is resumed activity or whether things had started to progress while I was still taking Abraxane.

I would imagine the next step is to try Abraxane again to see if it continues to beat back the invasion. If not, we switch to another therapy and hope it lasts long enough for science to come up with new alternatives when the current one fails. Luckily I still have several choices.

I wonder if the follicles on my scalp will again go nuts and begin flinging hair onto my shoulders and pillowcase. I wonder if my eyebrows will fall out again. I have five o'clock shadow at the inner corners and actually tweezed the other day. I will be sad to see those hard-earned hairs go.

Labels: Abraxane, baldness, barium, blood tests, bone scan, Brian, CT scan, eyebrows, hair, Lita, nausea

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(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.

Labels: bone scan, Brian, chemo, CT scan, Dr. Hayes, hair, hip, hot flash, Lita, liver, lungs, Martha's Vineyard, pug, tired, toys, vacation

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Barium tastes awful and has a hideous texture. It also gives me unrelenting gas. Please, do not ask me, "Which flavor would you like, berry or banana?" I would not like either flavor. Do not pretend you are doing me a favor by giving me a choice.

So today I went to get a nuclear shot, then I went to drink the barium (they made me feel bad that I wasn't able to drink enough, but really...the last time I went through this, I vomited their precious barium all over the floor in the scan room)--at which point Brian showed up--and have an i.v. jabbed into my arm, then I had the scan. Am I becoming allergic to the iodine? Either so, or they squirted me with an extra huge dose. I felt the familiar heat in my eyeballs and my groin (it's a side-effect of being squirted with iodine...you get hot as the stuff burns through your veins) but this time I felt like it was harder to breathe and my throat got hot and I got an awful taste in my mouth, and did I mention it seemed unusually hard to breathe? That can't be right...

After that Brian and I went back to the nuclear medicine waiting room and after a while I notified them that I was present. I slept while Brian waited with me and woke up when they came to give me the bone scan. The first stop was the bathroom, where I had gas from the barium and had extreme difficulty urinating as commanded. Firstly, I tend to not be able to urinate on command, and secondly it's been difficult for me for some reason lately. I'd suspect a mild UTI, but I'm too lazy to investigate. The bone scan was actually kind of peaceful, because it only required me to be still. I didn't have to worry about when to breathe or not breathe like with the CT scan.

On the way home, I am pleased to report that my route turned out to be faster than Brian's and/or more efficient. I took Fuller until it became Geddes to 123 to 14 to Ford road. Brian expected to be home and have his feet up by the time I got there but sweet, sweet victory was denied him as he walked in the door and there I was, toasting some Pop Tarts. Hee.

Labels: bone scan, Brian, CT scan

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This week I will be undergoing a new spate of tests including multiple CT scans and a comprehensive bone scan. This is actually good news: it is Dr. Hayes' opinion that since I am doing so much better now than I was in November when he first saw me, and he wants a new set of baseline tests.

Since I was doing so much better, I asked about whether or not it would be advisable to ride a motorcycle. I wanted to know specifically if the shaking engine would cause my pelvis to fall apart or if I might be ok given smooth roads and a careful rider at the controls.

His face contorted. "Weeeeeell," he said, "I don't want to tell you not to do it if it's something you really feel you want to do, but I'm a doctor and the consequences for you if the bike goes down are really bad."

We regarded each other.

"I won't tell you no, but all I'm saying is if you do, I don't want to know about it," he blurted.

I have since ridden behind Brian on his motorcycle twice, using the helmet that was specifically bought for me and which I'm pretty sure Brian won't want to use (due to the fact that it is pink). I am not graceful getting on and climbing off, but we are working on that and I'm sure I'll get better at it given practice.

Anyway, I have a spate of tests tomorrow, and next week will have a port inserted that will make it easier to draw blood and do the monthly infusion. I hate having an i.v. inserted almost more than anything. They have such difficulty getting the i.v. in the veins in my right arm/hand that when I have to have it done, it takes multiple tries, and is torturously painful. A port should make things easier, but getting the port inserted is some kind of surgery, and I'm nervous about it. Will they knock me out? I tend to react poorly to anesthesia. Will they try to sedate me but keep me conscious? That didn't work AT ALL during my liver biopsy, and the fentanyl patches might interfere with the kind of medication they want to use for that. I'm also slightly freaked out about having a tube in my arm at all times. It seems inhuman to have tubes and things winding their way around the interior of my body. Borg have tubes on the outside, but I can't help feeling that the process has begun.

After having my biological and technological distinctiveness added to the collective, I will immediately get to test out the new port by having my monthly infusion, because by that time they just won't have tortured me enough for one day. Then of course comes the monthly shot in the stomach, the one that renders me menopausal and is the cause of the hot flashes I've been suffering with some increase in frequency.

On the other hand, my acne has finally gone away. It could be my new skin care regimen, but it's probably the hormone therapy. My nausea also seems to finally be under control, although I have not regained my appetite for anything but sweets.

We are Borg; We demand your ice cream and leftover Easter candy.

Labels: bone scan, Brian, CT scan, Dr. Hayes, fentanyl, hormone therapy, hot flash, IV, liver, motorcycle, nausea, port, star trek

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And it wasn't just to say they loved me.

I have an appointment November 29 at 4:00 p.m., to which I am supposed to hand-carry all of the films associated with my various mammograms, scans, ex-rays, and what not. I'm not entirely sure how to go about getting all of them, since I'm not sure the doctors who prescribed those tests necessarily get the actual films. Sigh.

Labels: bone scan, mammogram, University of Michigan Cancer Center, x-rays

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For Halloween I plan to be a photon torpedo. I will be arriving at the hospital at 5:00, will be injected with contrast dye, and will be loaded into the torpedo bay where they do MRI scans.

I had an MRI last Wednesday, and the report showed some possible "activity of the L4 and L5; results inconclusive." They recommended a repeat, this time with contrasting dye.

At least this time I will know to park by the West entrance. Last time I was unaware that they wanted me to sign in at the west lobby, so I walked in the main entrance and had to negotiate several very long hallways. Then they made me walk down several more long hallways to get to Radiology. Then the MRI guy came and got me, and led me down a bunch of other corridors, until we ended up in what looked like a loading dock (complete with a hydraulic lift), and a big industrial door which slides up and down and looked like the back of an 18 wheel semi. I swear to god for a moment I thought I was being abducted.

"They're going to load me onto a truck, take me to Iowa, and perform heinous medical experiments!" Yes, I have probably seen too many episodes of X-Files. (When I related this story to a colleague, I had gotten as far as mentioning the loading dock area, when she blurted out, "You're just like Scully! You're going to end up on a rail car with probes sticking out of you!" I'm not the only one.)

November 3 I will be having my second-ever bone scan. This time the radioactive isotope will cause a mutation granting me super powers; I'm certain of it. I deserve to have super powers. I will try to use them for good and not for evil, although I'm really hoping I gain the ability to electrocute people.

Labels: bone scan, Halloween, hospital, MRI, star trek, superpowers, X-Files

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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:

1. find a different PCP who is part of the same network as my current oncologist
2. find a totally new oncologist who doesn't know me
3. 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

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