Janet's Blog

I went back to work Monday, March 10 and was happy as a clam to not only be out of the house, but to once again be useful to society. Unfortunately, by the evening my neck/chest/shoulder area began to burn and itch so badly that I cried at my appointment the next day. So I didn't have infusion--they can't treat me with chemo until the skin condition clears up; instead, I went back to the dermatologist to get more of the giant blue horse pills, many boxes of lidoderm patches, and a medication called lyrica (used to control seizures, treat nerve pain and fibromyalgia). From there, I was referred to the pain center to see about getting something called a "nerve block."

Nobody told me to fast or have someone else take me to the appointment, so they could not actually do the block that day.

The doctorlet took my health history and consulted with the actual doctor, who decided I should be on more of the lyrica but should spread out the dosage over the day.

I thought this was a little weird, as the medication label indicates that I should not operate machinery or drive until I knowhow this will affect me...I was also to take Pamelor (since discontinued in light of my extreme fogginess and impairment), which boasts the same warning, and ultram (same warning) instead of Ibuprofen.

Loaded up with so many medications--my arms feel noodly and I was/am definitely in a state of "keep Janet from driving and don't let her make important purchasing decisions right now."

I tried again on Tuesday to have infusion, but Dr. Hayes wants to continue to delay the chemo. It was suggested to me that I not try to return to work and that I should probably not plan to go back for another four weeks or so.

I'm worried about my medical condition right now, but having to stay home again when I was so happy to feel like things were getting back to normal is the hardest to bear. I don't really know if it will be four weeks, either, because assuming my idiotic nerve issue gets taken care of, there's no guarantee that I will immediately tolerate the chemo treatments well, and sometimes the follow-up appointments can be unpredictable.

I went to the dermatologist yet again--they attempted to do another scraping test to see if I need a third course of an anti-viral (tests were inconclusive, but it is the attending's opinion that the lesions do not look active, they look like they are healing). The doctor I saw this time at the derm office remembered me--"Wow! Your face looks great!" She is the one who treated me for my horrible steroid-induced acne.

I should be grateful the skin on my puffy moon-face looks great.

The skin on the back of my head and neck is very broken down and I have wound care products to cover the worst of it.

The very bad thing (aside from being in ridiculous discomfort from the nerves in my neck and shoulder all going BLEARRRRRGHHH!) is that without chemotherapy, my liver function is certainly not improving. It was Dr. Hayes' and Lita's opinions that Adriamycin was no longer working for me at the time I had my brain episode. So the plan is to switch me to Xeloda and Gemzar. However, one doesn't do chemo while doing whole-brain radiation. And one doesn't do chemo while suffering shingles. And one doesn't do chemo when suffering a re-flare of the shingles that's even worse than the first time around.

I had a CT scan recently, and it occurred to me that Lita has not given me the results, which is a little unusual. I am worried about what my liver is doing. I really need to be on chemo, and haven't been for about two months. Naturally, other problems are occurring as a result.

So if anybody needs me, I will be at home shaking my impotent fist at the heavens and watching bad daytime tv. I am itchy, bloated, have swollen ankles, and my liver and spleen are probably busy applying for their own zip codes.

Labels: acne, Adriamycin, CT scan, Dr. Hayes, Dr. Sachs, Gemzar, Lita, liver, lyrica, pamelor, shingles, spleen, ultram, Xeloda

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It's that time of year: Valentine's day is fast approaching, when people's thoughts turn to matters of love and "why do greeting cards have such horrible rhymes?" In case you don't want to make do with the standard chalky valentine heart candies and want to send your sweetie a special custom message, you might try the Candy Heart generator instead.

I've also been thinking about my own heart. I am currently taking the drug Adriamycin, also known as "the Red Devil." It is bright kool-aid red and looks very alarming. Adriamycin also has a terrible reputation for causing nausea and all manner of horrible chemo side-effects. I can't say that I've had many problems. I do need to take colace, but it was really the anti-emetics that caused the worst of my symptoms when I began my new regimen.

The Red Devil seems to agree with me.

Here's the catch: Adriamycin is cardiotoxic. Whether given in large doses up front or given in small doses over time, the more Adriamycin you've had, the greater your risk of experiencing permanent heart damage. There are drugs one can take to try to delay the onset of heart damage, but when should they start giving it? There are guidelines, but how close can one cut it? I will probably get to add heart function tests to my usual array of scans. The Red Devil is being sweet now, but he'll eventually break my heart if I don't break up with him first.

No news on the liver and spleen, aside from "ayep, they're big." I'm not keen on doing another liver biopsy, but if I start to worry more about this, I might ask. My first question will be, "Can I be completely and totally unconscious when they stab me in the chest?" I really didn't like the last biopsy.

Labels: Adriamycin, biopsy, liver, spleen

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We had a visit with Lita today. Dr. Hayes is often traveling, accepting awards and presenting papers and what not, so I don't actually see him that frequently. It's the price to be paid for having a rock-star oncologist (and by that I mean a very renowned expert in the field of breast cancer), but Lita can handle things just fine.

I'm feeling great, aside from a few residual digestive issues, which may be lingering aftereffects from the Avastin, so I should be mindful but not paranoid. I have no pain anywhere, which is pretty astonishing in light of where I was two years ago.

The EKG I had recently showed that my heart is better than normal. Even if I were to suffer some loss of function from the Adriamycin, it would do just fine. There is a lifetime limit on Adriamycin because it does cause heart damage, but according to Lita, if it does well and keeps me stable, it may be possible to take "heart protecting" drugs to be able to prolong its use.

She also said that I was looking great, and wanted to know what was different. Had I done my eyebrows differently, or something? I said that I've been wearing the blonde wig a lot, and today's was brown. I didn't mention (although this could also be a factor) that I've lost about ten pounds and am nearly in the weight range that was "normal" for me--without having to exert special effort--when I was healthy. I dunno. I just FEEL better. I've been chipper and snarky (to Brian's chagrin, no doubt).

We walked in the door today after coming home from infusion just in time to answer Lita's phone call: she had my lab results which weren't available at the appointment. My CA15.something-or-other test shows that my tumor markers have dropped about forty points. The CEA test (also for tumor markers) blipped up a little bit, but it is Lita's opinion that the CA15 is more specific to breast cancer and therefore more important. I'm pretty happy with that. She also said my liver function was "much improved," which is pretty groovy.

November 5 was the four-year anniversary of my mastectomy. October 30 was the two-year anniversary of being diagnosed with metastatic disease. This could be a depressing time of year if I wasn't feeling so terrific. I got good news, I got my energy back. I'm bald and gimpy, but you can't have everything.

Labels: Adriamycin, Avastin, baldness, Brian, Dr. Hayes, Lita, liver, tumor marker, wigs

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Since switching from Abraxane to Adriamycin, I have had more energy. Sure, the digestive issues have been bad, but eliminating one of the anti-nausea medications helped (we replaced the intravenous Aloxi with Zofran pills that can be taken as-needed) and I think I have it under control.

I walk faster. I noticed it the other day when I was heading down the back hallway at work. For months I've been sort of shambling around like one of the extras in Shaun of the Dead--and now I'm almost walking normally. I tilt to the side because my legs are different lengths, but concentrating a little keeps me from bumping into walls.

I have grocery shopped and cooked meals. Brian is amazed. Shrimp boil and crabcakes. Stuffed peppers. Black bean soup. Chicken or bean enchiladas. I'm actually planning to make risotto this weekend, so help me.

It doesn't stop there: I've been hanging pictures on the walls, assembling electronics, clearing clutter, sorting mail, straightening bathrooms, and catching up on some reading. I've been very talkative and have not felt the need to go to sleep early. What is with this crazy activity level? Is this how I was when I was "normal"?

I feel great.

I sure hope the new chemotherapy drug is actually working. It would suck to feel so terrific only to have to switch immediately to something else.

Labels: Abraxane, Adriamycin, Brian, chemo

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Turn away (once again), ye who are squeamish regarding digestive issues.

In light of my previous rear-endal discomfort, doctors have prescribed for me stool-softeners and have recommended drinking tons of water.

I am not, and have never been, a big water drinker. I am not a big drinker of any kind of liquid--with the exception of Longhorn Steakhouse's strawberry lemonade, which for some reason makes me suck it down like there's no tomorrow (I think there's crack in it). Realistically, I can not go to Longhorn to get the appropriate liquids. I just can't drink what I am supposed to. Also, for the past year, I have not required, um, "softening." I've stockpiled an emergency reserve of Immodium, instead.

In fact, I took some generic equivalent for Immodium this past Monday so that I could sleep without fear.

Then Tuesday came, and I went for Adriamycin. I was thrilled to have no nausea, and ate what I wanted.

Then Wednesday came, then Thursday. By Thursday night I was feeling uncomfortably full and heartburn-y. Friday I woke up, feeling swollen to at least twice my normal size and as if the alien were about to burst from my stomach any moment.

I had to call in "constipated" to work. Luckily they do not ask me why I am calling in, unless it's an absence long enough to require a doctor's note.

So I tried those softeners. I tried to drink liquids, but there was barely enough room in my torso for my lungs to wiggle sideways and get a tiny amount of air; I couldn't be expected to chug any number of eight-ounce glasses. That's just crazy talk. I sipped teaspoonfulls here and there. I tried softeners with senna, a "gentle" vegetable laxative. The net result of this was further bloating with stomach cramps.

Over the weekend I continued trying these mild therapies, continued trying to suck down more than four ounces of liquid in a day, and got very, very hungry, which only made my stomach discomfort worse.

Bloated AND starving! That's just ridiculous.

To make matters worse, Brian has been dealing with a cold, and I didn't want to be exposed, so I pretty much holed up all weekend, which got very depressing.

Yesterday some pellets did start coming out, which is better than nothing, but insufficient. There's nothing quite so demoralizing as straining for what seems like hours only to have three or four tiny pellets plip into the bowl as a result. I needed something more effective.

Since I was released from my month-long vacation at the hospital with any number of frightening narcotics, I also happen to have some bottles of fizzy magnesium citrate. For anyone who has not experienced magnesium citrate, I am telling you now that you do not want to. The only more brutal treatment of one's bowels I can think of relates to the method by which King Edward II of England was executed at Berkeley Castle.

I kept regarding the bottle. It kept regarding me. "Pleasant cherry taste." I most certainly do NOT believe the dosage. This morning I emailed Lita and asked for her advice. She called back and recommended going with milk of magnesia instead, because the magnesium citrate is quite strong. If I did have to go there, maybe try just a spoonful at a time.

Luckily, I found a bottle of milk of magnesia in the cupboard and cheerfully took the maximum dose of that instead. About two hours later I wasn't quite so cheerful. Now I'm back to being in bed, praying for sleep. It did its work, but instead of worrying about the alien bursting out of my belly, I am worried about battery acid shooting out of my hiney.

Tomorrow I get Adriamycin again. I wonder if I'm going to have to do this all over again.

Labels: Adriamycin, Brian, constipation, Lita

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Tomorrow I will receive Adriamycin for the first time. This is the scary bright red chemo drug also known as the "Red Devil."

Either Lita is right and I am afraid for no reason--she says she has successfully treated a 90-year-old lady with Adriamycin--or the warning stories are true and it makes people ill, causes fatigue, and makes your pee turn red.

She did actually say something to me about whether I could possibly work half-time, which worries me. Why? Will I need to?

I hope I don't experience fatigue immediately. I am tired of being fatigued. I also hope I don't experience nausea. I have such a fear and horror of the whole gagging and spewing thing, that I can actually vomit from anxiety. I am a bit worried that I will work myself into a fervor that anti-emetics may not be able to deal with.

Wish me luck.

On a completely unrelated note, Brian lost a giant filling this weekend while eating gummi bears. So when I went shopping with my mom Sunday, I brought him some gummi ghosts and bats from Harry and David. He also ate some of the Moose Munch (original dark chocolate...MAN that stuff is good) I got for myself. He is going to the dentist this afternoon and joked that he was going to pack the cavity hole with caramel corn. I told him he could bring the tooth chunk to his boss as proof that he needs to leave work early.

At least it would have been a good way to get the tooth chunk off of our bathroom counter.

Labels: Adriamycin, anxiety, Brian, Lita, mom, nausea

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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

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