Archive for the 'pulmonary embolism' Category

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.

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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”!

07
Jul
08

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.

21
Jun
08

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!”




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