Iowa Stubborn? Nothing Compared to Greenlaw Stubborn.

The song says: And we’re so by God stubborn/we could stand touchin’ noses/for a week at a time/and never see eye to eye

Me? I’m just stupid-stubborn.

I can’t decide if it is a case that I felt as if I needed something I could control – we’re pumping all these poisons into my body to kill something that is out of control, but by God, I’m not going to take any drugs I don’t have to; or if it’s more that I felt I shouldn’t be having so much pain, so I refused to acknowledge (whine, yes; acknowledge, no) that I was nearly crippled by the pain I’ve been having.

Damn it all! I can take care of it by just ignoring it, trying to move through it, blogging about it; but take a pill, NO!

So instead I ended up at the ER for 5 hours last night because the pain in my chest was so bad that I knew Dr. Medici would have a fit if I didn’t go in. His concern is that chest pain could be a sign of another pulmonary embolism. I was guessing that it was just a new and interesting chemo side effect, but was willing to consider that maybe I’d gotten pneumonia again; as it turned out, it was nothing that could be identified, so the (very kind and sweet) ER doctor had a serious discussion with me about pain management.

Initially I refused to have them put a morphine drip into my IV, but they convinced me to have at least a little bit. After that kicked in, my brain (oddly enough, on morphine) cleared, because all of a sudden, I was down from a 6 – 7 on the pain scale to about a 2 – 3. I began to see the insanity inherent in my “no drugs” position – I don’t have to suffer, and if there’s some perverse sense of satisfaction at betraying my body which has betrayed me, then I really do need some sort of mental health counseling. And if it’s just being Greenlaw Stubborn (my maiden name – whatever else we are, stubborn is possibly the number one trait that my immediate family has in common), then it’s stupid-stubborn. I have my moments, but I’m not stupid. Not for long, anyway.

So I asked, “Please Ma’am, may I have some more?”

Today I called Dr. Medici and asked him for prescriptions for day/night pain pills. One of my reasons for not taking pain pills is that I don’t want to have my brain fogged; but I can see now that the pain had my brain fogged at least as much, if not more, than any pain pills will; plus the lack of sleep due to pain has just been fogging it more. I haven’t felt up to driving due to the pain and foggy-brain, so it’s not like I’ll be missing out on anything by not driving because I’m on pain pills.

My biggest worry is addiction. My mother was an alcoholic, and I have sworn that I would never allow myself to become addicted to anything (gaming excluded – not gambling, RPGs). I think this is truly the root of my concern about taking pain medication. Anything that is going to truly help is an opoid, thus addictive. I also have been trying to avoid taking insomnia medication for the same reason, but have been doing so when the pain was so bad that I just couldn’t sleep at all.

The good news there is that the more pain medication I take, the less insomnia medication I will have to take. At least if I do end up having to break an addiction, it’ll only be to one thing!

Also, I think it is pretty likely that a lot of my emotional distress has been caused by the pain – thinking that I’m less than one month into the rest of my life going through some form of treatment or another, and that much of it might be defined by the kind of pain I’ve been suffering has been extremely depressing. Yet another type of fog that should lift with the cessation of the pain.

So I’m waiting to hear back from the pharmacy on when my prescriptions will be ready. I have overcome my stubborn streak, at least this once. Hopefully any brainfog from the pain pills will be less than that garnered by the pain itself, and I can start to feel human again.

And seriously, I understand that I have reason to be depressed even without the pain; but that’s just not like me to be *so* depressed. I’m a strong woman, and typically have an optimistic outlook – it was a road I traveled for many years to get me to that state, but once I achieved it, it hasn’t been hard to find the positive mindset even under significant pressure. I look forward to getting back there.

Chemo #2 – questions, questions, low on blood

Today was a “meet with the oncologist” chemo day. Lab first, meet with the doctor, then chemo.

As usual, we pretty much drowned Dr. Medici in questions. I think he was shocked and a little awed when he saw the list I was reading from. But most of them were quick, easy answers (talk to so-and-so, yes, no, go here, do this). There were a few that got a bit more in-depth, and so our meeting went to 45 minutes instead of the scheduled 30. He’s told me before that he only has one patient who asks more questions than I do, and he says that my questions are usually pushing the “boundaries of oncology”. I think he meant that in a good way.

The best answer was that the pain I’m feeling in my liver *might* be the tumor shrinking. Since the cells are attached to the liver cells, it can cause pulling when the tumor shrinks. We don’t know that this is the cause, but knowing that it could be makes me feel a lot better.

He also approved of going back on nearly all my supplements, and thought it was a good idea, even; especially the Vitamin D and calcium. The one that I have to avoid is the fish oil, because I’ll be starting Avastin next week, and the fish oil could increase the likelihood of bleeding problems. Avastin is the drug that inhibits the growth of blood vessels, and had to be delayed due to the liver biopsy on the 18th. Basically, the inhibition of blood vessels means that wounds don’t heal as fast. Apparently the port placement surgery doesn’t count as a wound, but the needle-pokes into the liver do.

When the nurse came to prep me for the infusion, he said that my wbc and neutrophil counts were very low, so I need to have Neupogen shots every other day for the next week, and a Neulasta shot next Saturday. These are drugs that help your bone marrow start regenerating white blood cells, and neutrophils in particular. In the meantime I’m immune-compromised, although a couple Neupogen shots should help pretty quickly. I’m hoping that by next weekend I’m back into the non-compromised range, because we have tickets to see Mark Knopfler next Saturday evening (dammit, I bought those tickets last September, and I’ve been really looking forward to this concert. Damn you, Cancer! I already had to cancel my New Zealand trip, and am unable to attend my girlfriend’s wedding. Just try and stop me, just try. I’ll get you my pretty, and your little Death of Rats, too!).

The doctor thinks that this’ll probably be an ongoing problem, and so we’re getting pre-auth from the insurance company for me to do my own Neupogen shots. It’s the same process as for giving myself the Lovanox shots that I needed to have after I had the pulmonary embolism. Then I won’t have to go in to his office to have the nurse inject me, which will be nice.

I had developed quite an attitude about giving myself shots in the belly, I think because I felt like I *should* have an attitude. It didn’t really hurt much if you poked the needle in quickly, and the worst part was the burning as the Lovanox was injected. When I realized that I was freaking out over something that wasn’t such a big deal, all of a sudden I stopped dreading it, and it became routine. I figure that’s what’ll happen this time, too.

Fortunately, I’ve got enough belly fat that I have plenty of different locations to give the shots, so I won’t be getting sore in just one spot. I’ll be getting sore in a whole bunch of different spots ;-}

My next big task is deciding what sort of haircut I want before my hair falls out. I’ve got another week or two before I start losing chunks, and I really don’t want to have hair everywhere. I picture myself as a progressively less hairy PigPen, wafting clouds of drifting hair behind me. Ewww. Just ewww.

After my first cancer diagnosis, I talked about getting a dragon tattooed on my head, because dragons have always been a protective symbol for me (and my friend Cathy hand-drew a henna tattoo of an awesome Chinese dragon on my bald skull, after waxing the skull first. Ouch.). The idea that I wouldn’t ever get cancer again because of the protection was tempting, but once my hair started growing back in, I just decided not to do it.

Then, of course, I got cancer again. That time, I was so emotionally and mentally acting like an ostrich that I couldn’t even have fun with the bald skull. I kept the stubble down, and that was about it.

This time, I’ve decided that at some point in a treatment break that I’m going to get a tattoo on my skull. But I’ve decided that now, instead of a dragon, it must be a phoenix.

OK, this is not funny anymore. . .

. . . I have pneumonia. Again.

The doctor doesn’t know why – I don’t think he really cares why, he just wants to get me over it so he can keep poisoning my body.

Which, most likely, is one of the reasons I have pneumonia again – the compromised immune system can’t beat back those germs that healthy people shrug off every day. At least we caught it early again; apparently I am ultra-sensitive to the pressure of fluid building up. Interestingly enough, it is only happening in my left lung, which is the same as the last time. The pulmonary embolisms were one in each lung, but I’ve long had pain in my left chest (heart problems ruled out); and the cancer was in my left breast. No wonder they call it sinister!

The first round of pneumonia responded to Levaquin, which is a very potent antibiotic. On second thought, maybe Dr. Medici is gleefully rubbing his hands together going “mwa-ha-ha-ha” that I have pneumonia, because seriously, this stuff has the potential to be as bad as Taxol and Avastin – it can cause temporary or permanent nerve damage, bleeding problems, seizures, hallucinations, and tendonitis or tendon rupture, amongst the five pages of warnings that came with the cute little bottle.

At any rate, one of the problems it can cause is sleeplessness, and right now, as tired as I am, I cannot sleep. Of course, I couldn’t last night either, so it may be totally unrelated to the Levaquin.

So anyway, that’s how *my* week is going. I’m mildly depressed, and massively annoyed at being sick again – hey, chemo by itself is enough. But Brian is back home from his trip, and that’s wonderful, and the cats have been very cuddly recently. . . hmm, I seem to recall that they were pretty cuddly back the first time. I guess they’re pretty sensitive to this, also. Great – now whenever one of the cats wants to sit on my lap, I’m going to get paranoid. I mean, I woke up this morning with a cat lying on top of me purring – and today I’m diagnosed with pneumonia. Cats as diagnotic tools – guess I won’t go there about whether he was doing a scan or not. Oops, sorry, I went there.

February 22, 2009

Yuck.

I mean it. Yuck.

This evening is the worst I’ve felt since chemo started. I have been sleeping most of the day, my bone and muscle pain has been down most of the day actually, but this evening is starting to edge up; I’m feeling some tingling and numbness in my extremities, my left hand in particular (peripheral neuropathy); my head is aching terribly, I’m having mouth sores start to develop (that was a regular thing with the Adriamyacin, only had this once before with Taxol); my mouth tastes terrible, and anything I eat tastes terrible; smells are really getting to me, I’m feeling dehydrated, and I keep swinging between feeling chilled and having hot flashes; my stomach is nauseous, enough so that I thought I was going to puke earlier, but the feeling passed; and there’s intimations that all is not well on the intestinal front.

Let’s see – oh, yeah, and my chest is hurting again. I’m not having any problems breathing, but I know if I call the doctor tomorrow, he’s going to want me to go to the emergency room. It’s probably just because I slept wrong, since my neck and shoulder on the same side feel tight and sore, so I’m going to try to stretch some to see if that helps. If it gets worse, of course I’ll call the doctor, but I’m *really* sick of having to go the emergency room for anything that might possibly be a pulmonary embolism. If it really were, I’d probably be dead by now!

So, wah. That’s where I’m at right now. Time for more drugs. Hooray for anti-nausea medication ;-} I may take some sleeping pills, too, just to see if I sleep better tonight than I did last night – the first couple hours were good, but then I lay awake for another couple hours, and then I got up and finished knitting the second sleeve on my current knitting project. Fell back asleep in the recliner, got another 3 hours of sleep there; took a long nap this afternoon, then again this evening. If I weren’t feeling so crappy right now, I feel as if I could sleep another 9 or 10 hours.

But the good news is that I’m halfway through the chemo. Only two more months to go! Woot!

February 3, 2009

Well, it’s only Tuesday, but already we’ve had more drama than necessary this week.

Last Thursday, I realized that I was coming down with a cold, so worked from home on Friday, and tried to take it pretty easy on the weekend. I already had plans for Saturday morning (a class on learning how to use my new sewing machine’s spiffy functions, which are indeed way cool), so I went to that.

Then on Sunday Carrie, James, Brian, and I went to brunch at Petite Provence on Division, which, not so coincidentally, just happens to be next to my most favorite bead store ever, Beads at Dusti Creek. So of course, we sent the boys home and spent a couple hours browsing and chatting – I really went to visit the ladies, because I haven’t been in for a long time, and miss seeing everyone. Sweet Calla was there, but sadly, nearly everyone else except for Eric, and most importantly Beau, were not. But we had a great visit with Calla, and Carrie found some great stuff for a new project.

I’m on a stash diet this year – I have enough beads, fabric for quilting, and yarn for knitting to last me for way more than a year (at least at my present level of output), so I’m only going to work from items in my stock. Of course, if I don’t have any findings, or need batting for a quilt, or don’t have the right set of needles for a knitting project, I will do what I have to do to make sure I don’t have a pile of UFOs on hand, but otherwise, NO purchasing new beads, fabric, yarn.

At any rate, I made it out of Dusti’s without actually buying anything, and oddly enough, without the usual “Oh, but just think what I could make with *this*, and it won’t be here the next time I come back, so. . .” temptation. It was fun to look at stuff, and I definitely saw things I would like to make projects with, but I didn’t even have to talk myself out of anything. Weird.

Of course, that might be because I wasn’t feeling up to par – my cold and left-over chemo side-effects from the last infusion on the 23rd had me pretty tired, and after I got home, I lay down for a two-hour nap. I had no problem sleeping Sunday night, either.

I woke up Monday morning to a pain in my calf, which lasted for a few minutes; and before that pain passed, my left lung all of a sudden felt like it was being compressed, and I felt like I was breathing through cotton. I could feel mild pain in my back underneath my shoulder blade. When I stood up I was a bit light-headed. Crap. These are similar symptoms to what I felt when I had my pulmonary embolism.

I called the oncologist, and, as I expected, he sent me to the ER. It was very busy, so probably the first hour was spent in the waiting room, although they did give me an EKG while I waited (sounds sort of like a service for the busy professional – EKGs and ultrasounds WHILE YOU WAIT!). Once I was in a room, they drew some blood and hooked me up to an IV. Annoyingly, they had to poke me in the arm rather than use my port, because the contrast agent they use for CT angiograms cannot be put through the kind of port I have. Apparently there is something called a “power port” that is specifically designed for taking that kind of abuse (hey – if a bloody plastic apparatus can’t take it, how are my precious organic VEINS supposed to handle it, huh?).

Another 4-1/2 hours and one CT scan later, the doctor told us that I had pneumonia. Brian and I looked at each other, pumped our fists, and yelled “woo hoo!” – pretty sad when having pneumonia is a good thing, but ya gotta admit that it is *much* better than a pulmonary embolism.

Even more exciting is that this means we don’t have to take me off the Avastin. It can cause bleeding problems (either clots or hemorrhaging in extreme cases), so if I’d had a PE, we would have had to stop it.

Finally got home (via Dairy Queen for my first meal of the day, and a consolation Heath Bar Blizzard) around 5 p.m., had a nap, read, went to bed. I’m on antibiotics for two weeks, and the doctor says I can go back to work by Friday. Of course, Friday is supposed to my next chemo, so I have a call in to the oncologist to find out if that’s still a go or not. I *really* do not want to delay the chemo. I want to get it over with!

I woke up around 2:30 a.m. this morning with an upset stomach and a killer headache. I got up at 3, had some broth and crackers, and sat in my recliner reading until 4. Since my stomach was better, but my head was still killing me, I decided to nap in the recliner for a while rather than go back to bed and risk waking Brian with my restlessness.

Around 7:30, Robin, who had been sleeping behind my recliner, started thrashing around, woke me up from a fairly sound sleep. I jumped out of the chair and went around to see what was the problem – he couldn’t stand up, his hind legs weren’t working. I calmed him down, ran my hands over his back and hind legs, but didn’t seem to have any pain reaction. Got him on his front legs, then lifted him onto his hind legs, and he was able to walk but not steadily – his rear legs kept collapsing. I got him over onto the carpet, and sat with him for a while, calming him down again, then tried standing him up again. It looked like it was mostly his right rear leg that was the problem.

I woke Brian up, who took him to the vet – they didn’t have an open appointment until 3 p.m. this afternoon, so Robin will be there all day. Since Brian has to go in to a client’s site this afternoon, hopefully our neighbor will be able to pick Robin up.

So that’s been my fun couple days so far. Woo hoo!

December 6, 2008

This time last year, I was bald. This year, I am painfully short (well, my hair is).

I’ve decided to start keeping track of my hair adventures with this next round of chemo – I have a patchy record from the previous treatment, but am going to start a picture album of the changes I go through this time. I really regret that I didn’t get more pictures of the super-tight curl and the afro in its various stages and colors; although perhaps I can get a digital copy from the radiation oncologist of my ‘tweener stage with the bleached curls and the white roots. Except I have the “deer-in-the-headlights” stare in that one, so it’s not one of my better pictures. I definitely take after my mom that way – we always look like that in posed pictures. Candids are *much* better.

My radiation burns are clearing up nicely. Lots of peeling, with smooth, shiny skin underneath; but I suspect that I’m going to have a visual reminder from the treatment for quite a while until the tan fades. Happily, I haven’t developed a lot of scar tissue yet, although that is apparently an ongoing development for months if not years after. There is one big clump right in between the two scars, but now that my skin isn’t so sensitive to touch, I’ve gotten back into the massage technique the physical therapist showed me. I had to buy some tennis balls just for that – it puts a more even pressure on the tissue and rolls very easily, whereas using your fingers creates more specific points of pressure (which is fine in many types of massage, but not so much for breaking up scar tissue, I guess). The trick is to keep from doing it when the dog is around – he thinks tennis balls are *his* toys. Fortunately he’s not such a ball dog as a retriever would be. Robin will play fetch and dribble them between rungs of a chair, but by far his favorite game with a tennis ball is to pull the fuzz off of it.

I’m still feeling some fatigue, although it never got as bad as I thought it might. I have had some difficulty sleeping, but for the most part have been getting roughly 7 or 8 hours most nights.

Next up, I have my chemo port implanted on Tuesday this coming week. When I met with the surgeon, she said that she would try to put it on the right side again, in the same spot as before; but sometimes scarring from a previous port can make that impossible. If that’s the way it goes for me, she’ll have to put it in on the left side. That’s undesireable for several reasons – there’s all the skin damage from the radiation treatment to avoid; I normally sleep on my left side, and laying on the side with the port is very uncomfortable; but the biggest fear is that it will raise the risk of lymphedema in my left arm significantly. I am very anxious to avoid developing lymphedema. The people I know who have it tell me it is much more than inconvenient – it can be life-changing because of the way you have to limit things you do, and how you do them. I’ll keep my fingers crossed (unless someone tells me that lymphedema can be triggered that way. . .).

At this point, I haven’t heard back from the oncologist about the use of Avastin in my case – he was out of town the week before, and this week I think he was hoping to avoid talking to me by having the triage nurse ask if I couldn’t just talk to him when I came in for my first chemo. Well, no, I can’t. I’m very concerned about the significant increased risk of thromboembolic events (blood clots), because of my history. And I really want to know how he can justify that risk in the face of an unknown benefit for a treatment that is completely non-standard. On the other hand, I’m also paranoid about the possibility that this recurrence is much more aggressive than we know, and am willing to take a calculated risk in an effort to make sure that any cancer cells that might have gotten through the lymph system are dealt with. So I stated my concerns very clearly, and asked to have him call me back. When I hadn’t received a call as of Friday morning, I called again and told her that I really wanted to hear from him, as this is very important to me. She called back early Friday afternoon, and said that he was “gathering information”, and that he would call me early next week. OK.

Then Friday, we’re flying down to see our parents for our usual fly-by Christmas visit. Robin is staying with our neighbors Sharon and Gary, who have the two miniature poodles Jasmine and Lola. The three of them got along great at Thanksgiving (i.e., Robin, Jasmine, and Lola), although the two girls did sort of play together and sort of ignore Robin. I’m hoping that enforced together-time will be more fun for him – he and Jasmine loved to play together before Lola came along, so I think he really misses that.

Tomorrow we’re going to see little Emily Rose (and daddy Greg, too!) in The Nutcracker Suite. ER is going to be a Snowflake, and part of the Arabian dancers; Greg is going to be one of the Party Guests. I don’t think he has to dance, but he may be wearing leotards – no, probably not. I bet you couldn’t pay him to do that!

November 23, 2008

Well, I’m cruising along toward the finish on my radiation treatments – four more to go, and I’m very pleased about that. Even though they gave me a “skin break” on the overall irradiation, the area around the scar and towards my armpit where they did the boost is extremely red and quite sensitive. No blisters yet, so it is still considered a first-degree burn, and the aloe gel does help soothe it; but I have to keep applying it, and having fabric rub against the skin for any length of time irritates it badly. I’m back on the general irradiation treatment now, but hopefully this 2-day weekend break, and the 1-day Thanksgiving break will keep it from getting too much worse.

We met with the oncologist on Thursday, and I have the starting date for my chemo: January 9. I will be having the low-dose regimen, where I have chemo three weeks in a row, and one week off. The drug will be Taxol, but the twist is that he also wants to have me use Avastin. I asked him why, since Avastin is normally used for Stage IV (metastatic) cancer. The other use for it is “locally recurrent” cancer, which describes my version. The Avastin will be administered in the first and third weeks of each 4 week period. I will have 3 or 4 months-worth of treatments.

Now, you know me, I am obsessively inclined to research, well, everything. Avastin’s action is anti-angiogenesis, which in real language means that it blocks blood pathways from forming to feed a tumor.

What?

I don’t have a tumor, right? This time, they got it all, right?

Yes, at least if you can trust the pathology report. However, the oncologist said that there isn’t really a standard for treating my type of recurrence – because of its quick return and aggressive growth, the idea is to be as aggressive as possible in its treatment. Hence the radiation to treat the local area, and the chemo to make sure that any stray cancer cells that might have passed through a lymph node without pausing are killed off.

But I do want to talk to him again, because I’m not really sure that I understand just how the Avastin is going to work on any floating cells out there – if it’s floating around in either the lymph or blood, the Taxol is there to kill it; Avastin is targeted to tumors. Perhaps it is just a precaution in case there were microscopic cells parked somewhere that did not show up on my PET scan this summer; or perhaps it is just because I’ve defied the odds already.

Another concern I have about the Avastin is that it causes bleeding problems. Now, the oncologist may have believed he was communicating the risks clearly, and I think for the most part, he did. But just the day before I met with him, there was a study publicized that claims that the risk of blood clots for Avastin patients is 33% higher that in control group studies. Of course, Genentech challenged that conclusion; as who wouldn’t when they make obscene amounts of money off a cash cow like Avastin. And I’ve been told this previously, that cancer patients are “hypercoagulative”, meaning they tend towards clots anyway, due to the cancer. However, the researchers based their findings on differences in clotting episodes between patients given Avastin and control patients that were NOT given Avastin – presumably the control group also had cancer. 33% increase is more than a statistical anomaly, given that both sets of patients should have been at the normal hypercoagulative risk of cancer patients in general.

The problem for me is that I have a history of pulmonary embolism; indeed, that is why the oncologist wanted me to have my ovaries removed – so that I wouldn’t be taking Tamoxifen, which includes an increased risk of clotting.

So why, if that is such a concern at a relatively low risk with Tamoxifen (0.5% for a deep vein thrombosis (leg clot), and 0.3% for pulmonary embolism (lung clot)), isn’t it a concern with a higher risk from Avastin (the *smallest* risk number I can find so far is 14%, which is a 6% increase over the placebo patients)?

Now, I’m interested to note that the clot information that Avastin labeling documents refers to includes both venous and arterial thromboembolic events – so in addition to having an increased chance of DVT or PE, I also have to worry about stroke, TIA, and heart attacks (oh, but those risks are only 4.4%, a mere 2.5% increase over the placebo group. . .).

So I’m not convinced at this point that I want to take my chances with the Avastin. On the other hand, the idea that there could be a stealth tumor out there somewhere is a concern. The researcher cited in the San Francisco Chronicle article, Dr. Shenhong Wu, said “his findings are not a reason to avoid taking Avastin,” and that it was simply a warning for hypervigilance in relation to clot symptoms.

So there you go. Will the cancer get me, or the blood clot? Or will I sail through this as I sailed through the last (unsuccessful) treatment? Stay tuned for the next exciting episode of “As the Epidermis Burns”!

July 6, 2008

We had a lovely 4th of July – we went over to Sharon and Gary’s for dinner and cards – Robin, Jasmine, and Keeko were all a little bit worried over the sound of fireworks, but for the most part, they settled down when they saw that none of us humans were worried.

Brian and I spent the weekend working on house projects, cleaning the garage, gathering a load-and-a-half of stuff to take to Goodwill, and generally getting the house uncluttered. I had to clean all my beading stuff off the dining room table, and fortunately I had recently cleared out my yarn stash, so I had room to store it all (most of it, anyway) out of the way. That actually took nearly all weekend, because my brain seems to be so unfocused that I’d pick something up, carry it to the place it was getting put away, then I’d see something in that spot that needed taking care of, and deal with that, ad nauseum. We did cull our games closet, and also the linen closet, which has become a sort of personal products pantry. I got rid of some things that had been sitting around in there for years that were never used (curling iron, never used it then, don’t need it now!), and rearranged stuff into a more logical order. It also took a long time because I had to sit down and rest a lot.

The last couple weeks has been long – lots of waiting, still having excessive tiredness, and the same lung symptoms that have been bothering me since a couple weeks after I got over my cold.

I had my chest CT scan and the brain MRI on Tuesday the 24th. On the 26th, the triage nurse called to tell me the results.

The good news? There are no signs of metastasized cancer in my brain. The bad news? There is something on my pituitary gland that they wanted to get a better look at, so I needed to have a more hi-res MRI brain scan.

The other good news? No pulmonary embolisms. The other bad news? There are a couple enlarged lymph nodes in the middle of my chest that they wanted to get a better look at, so I needed to have a PET scan.

Had the PET scan Monday morning (the 30th), and the second MRI on Tuesday afternoon. I talked to the doctor on Thursday the 3rd, and I basically still don’t really know anything, and will have yet another medical procedure to go through.

The thing on my pituitary gland is a “cystic lesion, consistent with a benign arachnoid cyst”. That might explain why I’ve developed a serious gross-out factor about spiders the last few years. It used to be that I was only bothered by spiders that might be sneaking up on me – so crawling under the back deck was completely out of the question, because I was pretty sure there were spiders under there, and what if they dropped on me while I was under there? But now, I’m like “50s Girl”, I scream for the hubby to deal with any spider I see. He just rolls his eyes and squishes them – even squished they gross me out.

The likely outcome of this cyst is that unless I start developing neurological symptoms (such as seizures, peripheral neuropathy (tingling or numbness in my extremities), headaches, neuralgia, or other indications that the cyst is growing or pressing on something critical), it will just sit there, wrapped around my pituitary gland, like Shelob in her lair.

The enlarged lymph nodes are of more concern. The PET scan showed that they were hot, or reactive. Basically, the radioactive sugar they inject you with will show areas with cells that have a high glucose uptake – which in my case means one of three things. The lymph nodes might be reacting to some sort of infection (so if I have bronchitis or walking pneumonia or something like that, they could be enlarged with infection-fighting cells of various kinds); they could be full of inflammatory cells; or they could be full of malignant cells.

The doctor doesn’t believe it is due to infection, since they’re almost twice as large as lymph nodes usually get under highly infectious conditions, and the relative mildness of my lung symptoms and little to no coughing imply that if I am fighting an infection like bronchitis or pneumonia, it is a very mild case.

At least some of my lung symptoms – the tightness and the shortness of breath upon activity, and pain that started this weekend, may be due to the lymph nodes pressing directly on the lungs, or on blood vessels that lead to the lungs, rather than anything actually in the lungs.

The only thing he mentioned in relation to the possibility of inflammatory cells being the cause of the enlargement is a disease called sarcoidosis. This is something that typically doesn’t require treatment unless you’re having severe symptoms (and looking at the Merck website, my symptoms do match some of the ones on the list, although I don’t know if they’d be considered severe). It usually goes away of its own accord, although it might take months or years.

He did not really focus on the possibility of cancer, although the location could be indicative of either Hodgkins Disease or some type of non-Hodgkins lymphoma. Probably not lung cancer, since they didn’t see anything in my lungs; and he says it is extremely unlikely that my lymph-node negative breast cancer could have spread, especially so soon after I finished chemotherapy.

He also says he is intrigued by my case, because now he’s starting to wonder if I really had pulmonary embolisms after all – maybe it was something relating to whatever is going on now with the lymph nodes. Of course, I was in denial about that anyway, so it’s easy to say that I never really believed I had pulmonary embolisms; but then, I didn’t have any good reason to believe I didn’t, just that I didn’t *want* to have them, so I tried to disbelieve them out of existence. Maybe it worked, too well.

So anyway, I get to have an endoscopic ultrasound biopsy – they’re going to sedate me and stick an endoscope down my esophagus, then poke a needle through into the lymph nodes. I don’t know yet when this is going to happen – I’d like to get it over with as soon as possible, of course.

June 20, 2008

Big news today is that I’m down 2.4 pounds since Monday the 9th – total down now is 24.6. I haven’t been this light since I was at PSU 4 years ago. It feels really good!

I decided that one possible cause of the fatigue was due to a change in my medications. The insurance company recently switched me over to the generic version of Zyrtec for my allergies when Zyrtec went over the counter – I thought maybe part of the problem was my allergies breaking through because the generic wasn’t working as well. I bought some Zyrtec the other day, and have been taking it instead of the generic, and so far, it doesn’t seem to have helped with the tiredness.

When I saw the oncologist for my quarterly check-up, he told me to check back in a week if I was still experiencing excessive fatigue. So I called him, and he decided I need to have another CT scan to check for pulmonary emboli, and then he added on a brain MRI.

So every time I’m sick, I have to worry that I’ve got cancer or another PE? That really annoys me! Of course, it annoys me more that my solution (changing my allergy meds) didn’t work – why couldn’t it be that simple? I asked him why I couldn’t just go to my primary care, and have her check me out for something fairly simple – but he feels that he needs to rule out “the big stuff” before I go that route.

Shouldn’t it be the other way around? I mean, usually when you start ruling out things, you check the easy stuff first – no, it’s not bronchitis; no, you just need new glasses; no, your ears are ringing because you were at a rock concert.

Until I got breast cancer, my doctors always assumed I had “small” stuff – if I had pain in my chest, it was due to overtaxed muscles; if I was coughing, it was a cold; if I had headaches, it was sinus problems or stress.

Now I don’t need to be a hypochondriac – my doctors are doing it for me.

Brian says, “Great, you’re outsourcing!”

April 6, 2008

Well, it’s been a busy couple weeks since my last post.

Shortly after I posted on the 21st, I got a call that my little brother was in the hospital. I flew down to see him on Easter (after having a wonderful Easter lunch with Sharon and Gary and their family). Brian couldn’t go due to a major project he’s working on for a client, so he dropped me off at the airport with a stern injunction to NOT PICK UP my own suitcase. When I checked the bag, they weighed it in at 25 pounds – everyone I asked for help was very kind about picking it up for me – I felt guilty about just asking people, because I look very healthy (and of course, I *am* very healthy, with the caveat that overdoing the lifting could make me *unhealthy*), so I felt compelled to explain about having recently had surgery, can’t lift more than 10 pounds, etc. Apparently Brian had called his mother (with whom I was staying, rather than getting a hotel), and told her I wasn’t allowed to lift my bag, so she came out to the rental car when I arrived, and my little 83 year old mother-in-law unloaded my suitcase for me. How’s that for embarrassing?

Tim was discharged from the hospital on  the Monday after Easter, and because he was at a hospital quite a distance from his house, and they are on tight funds, I gave him a ride home. I got to briefly see my nephews and niece – they’re all so big! The oldest son still at home will turn 17 in May, and he was the only one to really recognize me – with so little hair, and since it’s been quite a while since we’ve been to visit, the younger kids had a hard time reconciling this aunt with the one that had longer hair.

I had scheduled my trip to fly home on Wednesday, because I didn’t know when Tim was going to be discharged, so I ended up having a free Tuesday to spend with Brian’s mom. At that time, I was still sleeping in the recliner at home, since my arm range of motion wouldn’t allow me to sleep with my arm in the right position to sleep in the bed – I can’t sleep on my back in bed, only on my sides – so I was sleeping in one of her recliners. We seemed to be on the same sleeping schedule, and stayed up late and slept in late on Tuesday. Then I took her shopping for some craft items she needed (she isn’t driving since her accident in November), and then we met Dani, one of my sister-in-laws on Brian’s side, for lunch. Had dinner with a group of Shirlie’s friends, and then we all played Mexican Train dominoes after.

Wednesday I flew home from Sacramento, and spent the next four days recovering from the trip. As I’ve learned, I can push as hard as I need to, but the payment comes due eventually.

This past Monday, I started back to work. I had to hit the ground running, because we’re just getting into a very busy time. With 800+ e-mails to look through, I spent Monday going through them (fortunately, most of them were either informational or ones that didn’t require action on my part), and got started dealing with the ones that *did* need my attention. The rest of the week, I was focused on getting literature and other items printed and ready to ship to our first big event of the tradeshow season. Friday afternoon I got everything packed (I didn’t pick up any of the boxes, because I’m still on the 10-pound-or-less lifting restriction) and discovered that even without lifting or even pushing the boxes around, just using the tape-gun to seal the packages was hard on me – I didn’t damage anything, but I definitely experienced some pain once I was back at my desk that afternoon.

Brian and I went out to dinner and a show on the 4th to celebrate our 11th wedding anniversary (actual anniversary date = 3/29) – McCormick & Schmick’s on 1st Avenue (*wonderful* halibut with pomegranate molasses – mmm), then on to Cirque du Soleil’s “Corteo”. Sharon and Gary met us there, and the show was fabulous! Of course, we’ve never been to a Cirque du Soleil show that wasn’t.

This weekend I’m totally wiped out – again, I am paying for pushing myself this past week – I had thought I might start back around 3/4-time to work, but discovered that not only did I need to work full-time due to the deadline for this tradeshow, but I also had to work extra hours just to get it done. Frankly, I’m happy to be back to work, and to be able to do my job – and I’d much rather be busy than not. But I can hardly wait until I’ve recouped enough of my normal level of health that I don’t have to spend the weekend just recovering from work. When I was younger, work used to be a way of recovering from the weekend!

After my trip to California, I weighed in on the 28th, and my weight was up 0.6 pounds. It is really hard to eat well when you’re traveling. Mostly due to the fact that you don’t always have the choice of healthy restaurants, or healthy menu items to choose from; and if someone is cooking for you, unless they’re also on-plan, they don’t know how to accommodate on-plan needs. All in all, considering that I’d also had a big Easter meal that week, I was surprised at only being up by 0.6 pounds over the previous week, although I’d hoped to be able to hold steady. This week I weighed in down 1.2 pounds, which brings my total loss so far to 13 pounds. Only 5 more pounds to go to meet my first mini-goal!

I’m in the market for another fan – the one I have been using has now broken in two places (I play with it too much when I’m not actually using it). Where does one buy these things? I have no idea – probably not in the clothes department, but maybe in the toy department? Or maybe I have to go to some place like Cost Plus (what are they called now, World Market?) or Pier 1. The hot flashes are bearable, although I would say they’re getting a little more intense than they used to be. I can usually feel them coming on, with a feeling that my face is flushing, and if I take my hat off (assuming I have one on), that is often enough to fend one off. If one is coming on when my head is bare, fanning myself seems to shorten the duration. I definitely think caffeine is one of my triggers, but there are just some things that one can’t give up and still be able to function.

There are a couple people I want to share news about – one of my friends from support group, Penny, just had surgery on the 31st, and is in the hospital recovering.  The surgery was a long one, but the doctors believe they got everything they were in after, and even took less than they thought they might have to.  Love and healing thoughts to Penny!

My physical therapist had a surprise double-bypass surgery a couple weeks ago – he is young and healthy, and had no idea he had trouble brewing in his arteries.  He is recovering well, and says that he can’t even lift as much as I can – when they crack your sternum and ribs, the weight limit is 5 pounds.  So, Tony, keep on healing, and maybe by the time we’re both released to normal activity, I’ll be able to outlift you for a week or so!

I had a bone density scan last week, of which I am awaiting the results – before the scan the technician asked what my height was, and I told her 5’3″.  She then measured me, and I came out as 5’2″.  I looked at my driver’s license after the scan, and it definitely says 5’3″.  Of course, that was from back in 1988, but I would be surprised if I really did lose 1″ of height.  As I recall, I was actually about 5′ 2-1/2″, but that it got rounded up.  Still, that would mean that I’ve lost 1/2″ of height sometime in the last . . . 20 years . . . well, when you put it like that, I guess maybe I can believe that.  I don’t know how often they’ll do a scan to compare to this base-line – the Femara has the possibility of causing bone density loss, but then, so does menopause in general.  Exercise helps, so I’m trying to get serious about a daily routine.

With my hair growing in, and only taking a daily hormone pill for the next five years, and being back to work on a full-time basis, I’m starting to feel as if life is finally getting back to normal.  Once I’m off the blood thinner, I will be as free of the medical establishment as possible as regular quarterly visits to the oncologist allows.

Whoo-hoo!

March 17, 2008

Today I’m tired, and depressed.  It’s going to take more than a green beer to cheer me up.

Even though I know that I should expect some emotional fallout from just having had surgery, and potential mood swings from entering menopause, I am just tired of dealing with cancer, of dealing with the “necessary” mutilations done to my body, and of dealing with having to go through recovery from surgery once again.  I’m angry at having to be afraid of getting another pulmonary embolism, one that might be less survivable than the last ones.  I’m frustrated at having to take all this time off work, with *none* of it being vacation, and all of it stuck at home.  I’m hurt at friends who don’t call, or e-mail, or visit; and annoyed at people who feel as if I should be calling them long distance because I’ve got all kinds of time on my hands and they are important enough to warrant a personal report on how I’m doing, without considering that I haven’t had more than half a paycheck coming in since September.  I’m sad because my hair will grow back, but my breasts won’t; and devastated at what I consider to be the awful results of the reconstruction.  I feel guilty for not having the dna testing that would tell us if my family carries the breast cancer gene markers; and worried because the extensive family history seems pretty clearly indicative that it does.  I’m grumpy about not being able to sleep at night.  I’m afraid that I won’t be insurable in the future, and I’m not even fifty yet.

However, I am grateful for the friends and family who do call, e-mail, and visit, and most importantly, care; for the fact that I was very fortunate to catch the cancer early; for the fact that I survived a pulmonary embolism in each lung, in spite of being misdiagnosed at first; for being able to take as much time off as I have and still being able to meet our mortgage payment and other important bills; and for not yet being fifty.

I’ll get over the depression, and one of these days I won’t be tired out, I’ll get back to being able to sleep at night, and will even have times when I do not think about what I’ve had to do to my body to survive, because I won’t have constant reminders of pain and discomfort that force my attention to my scars and my misshapen form.

December 2, 2007

(Dancing around, pumping my fists in the air, shouting “Woo-hoo!)

I only have to have 4 chemo sessions after all!  Obviously there was some confusion, but when I saw the oncologist on Friday before my chemo session, he said “And you’ll be done on December 28th.”  I said “Except for the Taxol sessions,” and he looked at me weird, and said “You’re not having Taxol – did we discuss having Taxol?”

“Well, no, both Brian and I came away from the first meeting thinking it was just 4 sessions of Adriamycin, but when I took the chemo class, the nurse said I was having 4 Taxol sessions as well – when I called your office to check, I definitely came away believing that I was having Taxol, also.”

(Looks at my chart, and his notes, shakes his head)  “No, you definitely don’t need the Taxol, at Stage I with no lymph node involvement, and the tumor size under 2cm.  Unless you really want it . . .”

You can pretty much guess my answer to that!

So I really will be starting the New Year free of the shadow of 2 more months of chemo – woo-hoo!

The other good news is that my warfarin level finally reached critical mass and became “therapeutic”, so I don’t have to keep giving myself injections of Lovanox – dang, and just when I was getting the hang of it.  Plus I nearly had my morse code SOS spelled out!  We’re still waiting on the final results of the blood clotting factors to see if I am prone to clots, but the results that have come back so far look good.  I’m still having pain, and the doctor says that it can take months for a clot to dissolve – the anticoagulant doesn’t dissolve it – your own body has to do it.  The warfarin just makes sure that you’re not developing more clots.

On Friday evening, after my chemo session, I actually had my first mini-steroid-high, and it was good timing.  My friend Monica, whom I used to work with, and her daughter Heather, who was the flower girl at our wedding, came by to visit.  Monica lent me a wig that she wore when she went through chemo – it’s very cute, so you may actually see me with hair one of these days- I’ll post a picture soon.  Heather was five at our wedding, and now she’s nearly sixteen, and driving.  Not to mention she’s an honor student planning on becoming a doctor, a cheerleader at her high school, she’s traveling to France this summer as an exchange student, and she’s grown into an absolutely gorgeous young woman!  Monica’s other daughter Megan couldn’t visit, as she was at a basketball (?) game, but based on her picture, she’s giving Heather a run for her money ;-}

Side effects so far this time are pretty much the same – reflux, fatigue, fog, and needing to eat constantly to avoid nausea.  Monday should be my lowest day, although I haven’t had the energy to do too much today – Brian and I played Boggle, and I actually did pretty well.  My stubble is starting to come out a little bit – if I grab it, it comes right out without any pain, but it’s not really falling out by itself so far.  Guess without the weight of the hair, gravity can’t do its job.

Stormy weather abounds – we’ve had quite a rain and wind storm going on here in Portland, but I guess it’s worse out on the coast.  I read that the nation’s tallest Sitka Spruce (off Highway 26 between here and the coast) snapped in half due to the high winds.  It was around 700 years old.  Hmmm.  Does anyone know where the second-tallest Sitka Spruce was during the storm?

julie

November 14, 2007

Welcome to the most recent installment of the popular soap opera, “All My Chillblains” (lived before a live audience).

In this episode, our heroine Julie finds herself playing out her recurring nightmare, in which she returns to the scene of her surgery, over and over, day after day. The curtain opens on Julie, standing in the lobby of St. Vincent Hospital East Pavilion, trying to remember where she has to go next.

**********************

I had to be at the hospital at 7:00 a.m. on Monday morning for a bone scan. After injecting me with yet one more radioactive contrasting agent (this one was called “Technetium”, really!), the tech told me to come back in 3 hours for the bone scan. The 10:00 a.m. bone scan was not too bad – it just involved laying on the table while it moved under the camera. The 2:00 p.m. blood draw was easy, once they found an unpoked place on one of my arms.

Monday early evening I received a call from my surgeon’s office rescheduling my next-day’s surgery from 10:15 a.m. to 7:15 a.m. My poor friend Cathy also had to suffer with the early morning since she was my ride to and from St. V’s. The actual surgery started around 9:30 (you have to arrive 2 hours early, of course…), lasted for one-and-a-half hours (they had a minor problem with a kink in the catheter tube that needed straightening), and we left for home at 2:30 p.m. after picking up some really nice pain pills from the hospital pharmacy. The worst part of the surgery was the pain in my back/shoulder/neck from the towel they rolled up and placed on the table between my spine and my right shoulder blade to position my chest and arm properly for the insertion. That alone required two pain pills, plus alternating heat and ice to make it bearable.

Wednesday I attended a “chemo class” in the morning – in addition to reviewing the actual process I’ll have to go through, we looked at the biology of blood, cancer cells, and anti-nausea drugs; covered the side effects of the drugs I’ll be taking; the importance of hydration and exercise to chemo patients; nutrition during chemo; how to deal with hair loss, both physically and emotionally; and the reasons I should immediately call the triage nurse (fever of 100.5 degrees or above is the most critical one). At one point, the nurse was describing how the goal of a particular chemo drug was to “kill, kill, kill,” and I nearly jumped to my feet and started jumping up and down yelling “Kill, kill, kill!”, but managed to keep my seat. It was a close thing.

Then, after I’d gotten home, my oncologist called – he had a lung specialist look at the refined thoracic CT scan; and then a whole group of lung specialists examined it this morning. Everyone agreed that not only did I have a pulmonary embolus (blood clot) in my left lung, it looks like there is one in my right lung, also. So I had to drive back to the hospital, get both an injectable blood thinner and a pill-form blood thinner from the pharmacy, and learn how to inject myself. The nurse drew about 7 or 8 vials of blood to do tests on my clotting factors to determine if I have a predisposition for clotting (in which case I’ll have to be on blood thinners for a very long time), or if it appears to be an isolated incident. Since the doppler ultrasound ruled out clots in my legs, nobody can figure out *how* I got clots in my lungs.

Tomorrow (Thursday), I have a fill/check-up with the plastic surgeon, and a support group meeting. This is the easiest thing I’ve got all week.

Friday is my first chemo – I have to put together a chemo kit, including a book, my iPod, my knitting, a pillow, some snacks, and maybe a blankie. For my second chemo, I’ll have to bring a warm hat. The chemo suite contains roughly 15 to 18 nice recliners, and they serve coffee and other drinks; and there’s a view, although it was too dark this evening when I was in there learning how to inject the blood thinner to see if it is at all worth gazing at for three or four hours at a time . . .

And I thought that was the worst of it – having to be at the hospital five days in a row (multiple times, some days). But I learned on Monday that I have to be back there on Saturday for my follow-on infusion of Neulasta, a drug that promotes white blood cell generation. That is a two-and-a-half hour appointment. Six days! I have to be at the hospital six days in a row!

At least I get a break on Sunday, before I have to go back in next Monday for more bloodwork to check the level of the blood thinner.

And I discovered today that I’m actually going to have 8 chemo sessions – both Brian and I thought that the reference to 8 included the Neulasta infusions; but it will be 4 sessions of Adriamycin, and then 4 sessions of Taxol. It really hasn’t been a great day, but oddly, all I can do is laugh. Brian suggested there might be a note of hysteria detectable, but all I can see at this point is the absurdity of it all.

Besides, the Games Party was great fun, even if I was totally wiped out the next couple of days; and today I had lunch with my friend Harriet – it was so good to see her! And the oncologist’s nurse practiitioner gave me a prescription for a wig. Life is good!

My plan is still to henna my head – Cathy is going to design a Chinese dragon for me, and do the henna painting, too. I’d been planning on shaving my head this weekend, and may still – but if I do, I’ll have a nice crop of stubble for roughly a fortnight. Choices, choices!

Julie

November 7, 2007

Finally it seems I’ve turned a corner in my recovery – I’m having very little pain, and although I still tire, it takes longer to hit me, and less time to recover, as well as that I can do more and more before I need a rest. I’ve been able to walk Robin around the 1/4 mile loop without fearing that I won’t be able to make it home, and yesterday, I began working a little bit, starting to go through the 754 e-mails awaiting me at work from the last 5-1/2 weeks! I was only able to focus for 2 hours yesterday, but today I managed a couple different sessions and worked for 5 hours, and actually did some work in addition to clearing emails.

At this point, I plan to continue to do some work from home up until Thanksgiving, and the next week start back in the office for as many as 32 hours per week through the end of the year. How much I’m able to work will depend on how the chemo affects me.

So far this week, it has been a medical comedy of errors.

Tuesday morning we showed up at the hospital for my chemo port installation surgery. Once admitted, they gowned me up, and had just gotten the IV inserted when my surgeon came in to talk to me. After describing what she would do during the surgery, and answering various other questions about it, she headed off to do the surgery ahead of mine. I realized that I had one more question, so Brian managed to find her before she left the pre-surgical ward and brought her back. I told her that I’d been in the hospital over the weekend, and that one of the things they had done was to inject me with a blood-thinner called Lovenox in case I had blood clots. She said “Oh, we have to cancel your surgery today, then.” If the surgery had been one day later, it would have been OK, but apparently the drug is still functioning up to 72 hours after injection (at least at the dose they gave me). The most likely problem would be that, since she was cutting directly into a vein to insert the catheter tube, I would have kept bleeding after she closed the incision, causing a major hematoma which could become infected, and cause the tissue around the chemo port to become infected.

So they removed the IV, let me get dressed, and sent me home. I now have my chemo port installation scheduled for next Tuesday, the 13th.

Then, this past weekend, of course, I was in the hospital having tests, one of which was a thoracic CT scan. Both the doctors at the hospital and the oncologist on duty told me I could cancel my CT scan that was scheduled for later in the week; and when my oncologist’s triage nurse called me Monday morning to find out about my hospital stay, she said that he had also agreed I could cancel the scan. After we hung up, I called and canceled my scan that was set for 2:00 p.m. on the 7th. Half an hour later, she calls back and in a very apologetic voice, asked me if I’d already canceled the scan. Turns out the doctor wanted to have a scan that focused on my thoracic spine, and to have a bone scan in addition. So she scheduled me to have a CT scan on: TA-DA, the 7th! Only this one was for 7:15 a.m., because some lucky sod grabbed my primo 2:00 p.m. spot. Sigh.

This morning, we drag ourselves out of bed, drive over to the hospital, fill out the paperwork, and the tech takes me back to the changing room. I get gowned up, and he comes back to fetch me. He asks if I know what the doctor is looking for, and I tell him that I believe he’s looking specifically for anything that might have caused my chest pain, including metastasized cancer. He says he’s going to go have a chat with the radiologist about it, and will be right back. 5 minutes, 10 minutes, no word. 15 minutes, 20 minutes, I’m drifting off to sleep on the tiny little bench in the changing room, when I hear the door open. Poor guy, he looks like he might be worried that I’ll be pissed – and it was a close thing. Turns out that they had the raw data from my weekend CT scan on their computer (I guess they archive stuff off to storage, but at some point longer than 5 days, anyway), so all they needed to do was refine the image to focus on the spine instead of the general thorax area. So they let me get dressed and sent me home – I thought it was pretty funny, but I felt very sorry for Brian, who’d gotten up very early to take me over. At least we hadn’t progressed to the IV point, or injection point.

Frankly, I’ve been a little concerned at all the toxic stuff that is being done to my body in order to kill a different type of toxic stuff – sometimes the cure is nearly as bad as the disease. X-rays, radioactive gas, radioactive contrasting agents, dyes, chemicals, etc. I’ve committed to getting through this in order to prolong my life, but I do worry that there can be future negatives to all the exposure to nasty stuff.

So I just listen to my guided imagery CD that depicts the chemotherapy drugs as golden healing liquids that burble through my bloodstream like a brook through a forest glade, pure, cleansing fluid that carries away the detritus; and hope that believing can make it so.

Julie

November 4, 2007

This story is called St. Vincent’s Massacre, but I’m not going to tell it with four-part harmony.

Well, for something like a year, I’ve had intermittent chest pain on my left side, and my doctor had ruled out heart problems with a battery of tests, and decided it was muscular pain related to the size of my breasts. As I mentioned previously, I’ve still been having the pains since the mastectomy surgery, so that seemed to pretty much rule that out.

Early Saturday morning, I woke up with a very intense pain in the usual place – it lasted about 10 minutes or so, then tapered off to “normal” levels (i.e., the usual 1-3 level of pain on the scale of 10, down from a 7 or 8). I managed to go back to sleep, and after I’d gotten up, I had various other symptoms (heart palpitations, numbness in my left arm, light-headedness, and tightness in my chest that felt like anxiety (even though I didn’t feel anxious mentally or emotionally)).

So Brian loaded me into the car, with my bag of knitting and a book, and drove me over to Urgent Care. Well, they got me right in, and stuck me all over with implements of detection, I mean, they stuck electrodes all over me, and they took an EKG. They gave me some children’s aspirin, and they handed me a piece of paper, and told me “Kid, go see the physicians in the Emergency Room.”

Remember St. Vincent’s? This is a story about St. Vincent’s. Brian drove me over to St. Vincent’s, where I was inspected, injected, detected, and selected, and all kinds of mean and nasty things. They took me into the pediatrics emergency ward, made me sit on a bed, and I was there two hours, three hours, four hours. I was there for a long time, and they said, “Kid, we’re admitting you.” Then I was categorized, prioritized, sanitized, and immunized. When they checked me out today, there was a binder with twenty-seven eight-and-a-half-by-eleven test results, with circles and arrows, and a paragraph on each one explaining what each one was to be used as evidence in diagnosing me.

In the end, the biggest worry was that I’d thrown a clot and had a pulmonary embolism. After a CT scan, an EKG, blood tests, urine tests, poking, prodding, quizzing, being slimed with ultrasound gel, breathing radioactive gas, and being injected with yet more radioactive contrasting agent, I have been certified as glowing with good health (well, except for the cancer, which in theory is gone). I told the doctor that this is why I usually ignore symptoms, because either it’s called ‘female problems;” it’s blamed on my secondary sexual characteristics; or it’s an exercise full of sound and fury, and signifying nothing. He reassured me that even though the medical establishment is baffled about my symptoms, at least we ruled out a lot of nasty stuff, and that if I experienced the intense pain again (which could be neurological in origin, since neither Vicodan, ibuprofen, acetaminophen, nor naproxen seem to affect it), I should call him and he’d see me immediately.

What I learned from this is to always shave your legs, because you never know when you’re going to end up in the hospital.

Julie