Posts Tagged ‘pulmonary embolism

14
Apr
10

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.

02
Apr
10

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.

27
Mar
09

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.

22
Feb
09

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!

03
Feb
09

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!

06
Dec
08

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!

23
Nov
08

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”!




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