Posts Tagged ‘friends. medical tests

02
Nov
07

November 2, 2007

Woo-hoo! I just tried driving for the first time – it was both easier and harder than I would have expected. Because my Mini is so small, it turns out the the majority of shifting arm movement is from my elbow, which helps. However, I do have to push to get it into first, third, and fifth gears, and that definitely was causing movement that made the left tissue expander move around some. It hurt, but not as bad as I was expecting. We’ll see how the muscles feel after a rest, since they’re unused to that much activity at any one time. I took my friend Sharon over to the Tanasbourne Starbucks for a pumpkin spice latte, and if I’d overdone it, she would have driven home. We did have to work up a makeshift “pillow” (using a sweatshirt I’d left in the car) to put underneath the seat belt’s shoulder strap, because I can’t shift and hold it away from my chest at the same time, and I didn’t think to take my pink-ribbon pillow with me. I’m definitely not ready to drive for too far a distance yet, but I’m happy to know that I can start working my way back to doing normal activities, even if it’s slowly at first.

This afternoon I went in for a MUGA scan, which tested my heart pump action. Of the two chemotherapy drug combinations I can choose from, the Adriamycin/Cytoxin combination can damage heart pump action on a permanent basis, so they want to check to make sure that I don’t already have any problems in that area. If I do, they will put me on Taxotere/Cytoxin, which has its own problems – there can be neuropathy side effects including numbness and tingling in extremities, which usually disappears, but can be permanent in a small proportion of patients. Because both my work and my arts and crafts extensively use my fingers/hands, I really don’t want to have to deal with this effect. Other than that, they’re essentially the same, except the A/C combo is given every two weeks, and the T/C combo is given every three weeks. At any rate, the MUGA showed that my heart pump action is at 62 (%?), which is definitely above normal (normal is anything over 50). And I’m radioactive for the next 60 hours.

I also have to have a CT scan next week, which will be looking at my chest specifically, because I’ve had some undiagnosed chest pain for over a year – my primary care doctor did a bunch of testing to rule out heart problems, and she decided that it was muscular due to being large-breasted. Of course, I no longer have that to contend with, and have been having the pains since I had the surgery (to me, easily differentiated from the pains related to the surgery). I’m not really sure what they’ll be looking for, and I’m not really sure they know either.

Then I have to have a chemo port installed under the skin on my chest – that will happen Tuesday; so it’s just possible that I will start chemo as early as next Friday (assuming that they have the results of the CT scan back in time), but more likely the Friday after (11/16). The port has a tube that will be inserted into one of my veins (probably the jugular), and it will go all the way to the vena cava. The chemo drugs are pretty toxic, and they can damage the smaller veins in your arms, not to mention that since they can’t use the obvious ones in the crook of your elbow, they often have to poke you several times trying to find the ones in the meat of the forearm. Also, the direct flow into the bigger vein helps dilute the chemo into your bloodstream faster, and makes the whole process go more quickly. The Adriamycin is administered by a nurse in a hazmat type suit, because if the drug gets onto your skin, you’d probably need a skin graft to repair the damage. And they’re putting this into my veins?!?

So next week is going to be a busy week. If nothing else, I can feel as if I’m able to do something to fight back, instead of having to just sit here and recover.

Julie

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30
Oct
07

October 30, 2007

First order of business: corrections. Do you think newspaper and magazine editors feel embarrassed when they have to issue corrections?

Obviously, in addition to inheriting my mother’s breast cancer tendencies, and her trick of calling people by the wrong name (often when she was meaning to say my name she’d say “Jackie” and then “Patty”, her sisters’ names, before she finally got to “Julie”.), I’ve also inherited her inability to differentiate between right and left. Thus, in the October 28th post, substitute “right” for “left” in all cases. As someone asked, why would more pain in my left arm make it hard to drive a manual transmission car, unless it were a British model? Admittedly, my Mini Cooper *is* a British model, however, the manufacturers have moved everything into position for American driving (except the bonnet release). At least I was consistent in misidentifying which side I meant . . .

So, corrections aside, I unexpectedly got more news today.

Apparently the company who performs the OncoType DX test (to determine the effectiveness of chemotherapy for my particular type of cancer) somehow received approval to proceed with the test, even though I’d planned on getting the predetermination from the insurance company prior to having it done. After venting to the poor nurse practitioner about the lack of response from her staff, and expressing my displeasure at the test having been run without my approval, we got down to the results of the test.

I do need chemotherapy. It will be four sessions, three weeks apart. Regarding when it starts, I’m still planning on going to the second-opinion appointment today, although I don’t really expect the end results to be any different. I’m pretty sure I’m going to change doctors, because even though it wasn’t the doctor I was unhappy with, the doctor isn’t the one who will actually be administering the chemo, it will be the staff. So it might start as early as this week, or it might start in the next couple of weeks.

I’d sort of gotten used to the idea that I might not need chemo, so I’m having to switch my mindset back to where I started, which was when I assumed I’d be having it. It does solve a little problem I’ve been wrestling with – do I cut and color my hair again, or let it grow out? Now at least I won’t have a skunk stripe to worry about.

Perversely, I’m in a better mood today after finding out I have to go through chemo than I have been the last few days. Either I really needed to vent to someone at the doctor’s office, or just having the uncertainty removed has allowed me to get back to my usual self.

When I thought I might not have to have chemo, I went through a (sometimes bizarre) mix of feelings. First off, there was relief that I was so lucky as to have caught this early, and happiness that I wouldn’t have to go through a really miserable experience. Then there was worry about “what if”: what if there is a spot of cancer that wasn’t in the main part of the breast tissue and was missed by the MRI? What if there was a single cell of cancer that passed through the lymph system? What if I have the genetic markers that predict both breast cancer and ovarian cancer? What if, what if? There was guilt that I was so lucky to have been Stage I and wouldn’t even have chemo when other women in my support group are at Stage III and Stage IV; and guilt about feeling happy for myself (Sue can relate to this!). The two weirdest feelings were: 1. I felt as if having cancer and not having to get chemo meant that I wasn’t really sick – which made me feel as if I were malingering by taking time off work; as if I had gone through an unnecessary surgery; and as if I hadn’t really had cancer. And: 2. I felt a sense of denied entitlement – if I’m going to have cancer, I want to have the full experience – if everyone else is getting chemo, I should get it too!

So maybe my good mood is because I have been pronounced entitled, and am joining the ranks of the “truly sick” ;-}

Isn’t the human brain an amazing thing?

Julie

28
Oct
07

October 28, 2007

Well, Halloween is coming up, and today I’m feeling like I am already wearing a horrifying costume. I’m tired, I’m in pain, and I just want this to be over.

Saw the surgeon on Thursday, and now the word he used for the ongoing edema around the incisions is “unusual”. Also, the skin around the incisions is a little bit red – he said he wasn’t concerned yet, but that he wouldn’t want them to get any more red. I’ve developed a patch of skin under the left breast that is red and bumpy, which could be a patch of yeast or perhaps some kind of fungus – we’re treating it as yeast, and it seems to be responding.

Also, I’ve scheduled a second-opinion appointment with a new oncologist. I’m not unhappy with the doctor I’ve seen, however, I’m extremely displeased with her staff. I’ve left several messages that haven’t been returned, and I am not able to get to either the doctor or nurse practitioner directly, or their voicemails, even. I’m trying to find out about the test to determine my future treatment, which the insurance company won’t commit to paying for without a pre-determination, and just getting no response from the doctor’s office. When I called to make the appointment with the new doctor, I explained that it was a second-opinion appointment, with an extremely high likelihood that I would be changing doctors, and I also told them that it was because of my frustrations with the first doctor’s staff. When I explained about the predetermination issue, the woman I was speaking to told me that the company who does the test is the one who needs to submit the paperwork, but they need a letter of necessity from the oncologist. That was more information in one phone call than I’d gotten from two conversations with the original doctor’s assistants, and a week of unanswered messages left on their voicemail.

I am slowly regaining some of my ability to focus, so I’ve been able to read more, which is wonderful! I have read “A Murder in Belmont”, by Sebastian Junger (author of “The Perfect Storm:), which is about a murder that he believes might have been committed by the Boston Strangler, not the man that was tried and convicted for it. Also, I read “In the Heart of the Sea”, which is the story of the whaling ship Essex, rammed by a whale, and the attempt of her crew to get back to land in lifeboats from the middle of the Pacific Ocean (some made it; and yes, this sounds like “Moby Dick” – in fact, it is in part the story that Moby Dick was based on). And I just finished “Into the Wild”, the book on which the movie is based. I’m trying to decide next if I want to read a book about the pirates Jean and Pierre Laffite, or re-read the “His Dark Materials” trilogy by Phillip Pullman (the movie of the first book, “The Golden Compass” is due out this fall).

Thursday I also had my ‘flu shot, and it hit me hard – I was totally wiped out for at least 24 hours. That made it really hit home about how hard this surgery has been on my body – I’ve been annoyed at how long I am taking to recover, but I see women in my support group who had surgery two weeks before I did, and they’re only a little farther along than I am. The doctor keeps reminding me I have to take things very easy, and not push my body too hard – that’s hard advice to take. I guess I’m not a very good patient (or at least not a patient patient!). Being able to read more is helping, though.

I’ve been able to knit a little longer at a time before I get too sore; and typing is getting a little easier, too. Sometimes just walking up the stairs is enough to exhaust me, but I’m able to move my arms higher than before, so I am definitely making progress.

I still haven’t done any driving yet – since I am having more pain with my left arm movements, driving a manual transmission will just exacerbate the pain. Unfortunately, both our cars are manuals. I’m planning on trying a quick trip to the store with Brian sometime in the next few days to pick up a couple things (I started grocery shopping online at New Seasons Market for the duration, but only for big deliveries – a quart of half and half isn’t worth the delivery charge . . .). That way, if it doesn’t work out, I’m not stuck at the store and Brian can drive home.

What I really miss is getting (and giving!) hugs.

Julie

21
Oct
07

October 20, 2007

10/13/07

Hi there –

Because I am having so much discomfort from typing (and because I’m only taking the *good* drugs at night to help me sleep!), I’m going to write this a little at a time starting on the 13th, probably finishing on the 19th or 20th.

I visited the plastic surgeon on the 11th, got a fill, and was told to continue to restrict my activity as I have been for the past two weeks – no problems, but still a lot of swelling and pain. Interestingly, the pain of stretching the muscles with the fill is not near as bad as the ongoing pain of underneath the tissue expanders, which feels as if there’s sandpaper being constantly rubbed against my chest wall; or of the hypersensitive skin both on my chest and under my arms. I was trying to explain to my neighbor how it wasn’t so much that it was painful pain (probably an oxymoron, but it really does say what I mean – pain that hurts but is of a bearable level), but that it was just always there. She said, “Oh, it’s relentless!”, and sure enough, that describes it exactly – if I ever didn’t feel it for a while, it would be a lot less distressing. But I tried taking the maximum dose of pain pills, and besides being a zombie for two days, it definitely affected my mood downwards. So now I’m trying to find the balance between pain control and keeping my positive attitude, taking the maximum dose of Aleve during the day, and the pain pills at night to help me sleep.

10/14/07

On Friday, I had my first meeting with my oncologist. She indicated that several of the aspects of my lumps implied that I might not need chemotherapy; indeed, that I might not benefit from it at all. Even though the cancer was invasive and multi-focal, the fact that it hadn’t spread into the lymph system,and its very high ER-positive score (estrogen receptor) are two indications that sometimes predict a lack of response to the two chemotherapy drugs that I would be given. There is a test that will actually take some of my cancerous tissue and type it and check its response to the drugs. That takes about two weeks, so hopefully I should have an answer by the 26th.

I will, however, have to take Tamoxifen – this is hormonal treatment that suppresses the estrogen in your body – for the most part, the worst side effects (that I personally have to worry about) are blood clots and stroke, and that it triggers menopausal symptoms such as hot flashes, weight gain, and mood swings. With my luck, after taking it for five years and suffering the symptoms of menopause, I’ll end up having a little break and then entering into the real thing!

10/17/07

Bored, bored, bored! As the Boss says, there’s 57 channels with nothing on (actually, there’s a lot more than that, even . . .). I find myself getting very restless, wanting to work on one of my many beading, knitting, or quilting projects, yet being stuck with reading, TV, and Netflix. It’s making me quite grumpy! I am able to read for more extended sessions, although it’s still only a chapter or so max, which means that there’s still a lot of time to fill in. For someone who reads around thirteen books a month while working full-time and crafting, too, this is rather depressing.

I’ve been watching some Law & Order, Numb3rs, and some CSI, and as I go surfing through the channels I get hooked by shows that I wouldn’t have expected: Man Vs. Wild, starring Bear Gryllz (I’m not sure about the spelling on his last name), for one. There’s just something about this guy that makes him very interesting to watch – it may be his complete lack of self-consciousness in front of the camera, or that he shows his honest reactions to some of the survival tricks he performs (eating scorpions makes him grimace and compare it to cheese that’s been sitting out . . . for three weeks. Yuck.) I’m torn about Meerkat Manor – on the one hand, the meerkats are fascinating to watch, but I get annoyed with the narration – specifically about the anthropomorphizing that goes on. OK, probably the thing that annoys me most is that the rival (i.e., read “evil”) band of meerkats is called the Zappa, making one of my favorite artist’s name into a pejorative; and that the names of the individuals in Zappa are often named for musicians who are from bands that are perceived as “dangerous”, such as Axl and Slash (of Guns n’ Roses) – or even named for a “dangerous” genre (e.g., one is named “Punk”, again, one of my favorite genres – but go figure – I heard a muzak version of the Clash’s “Rock the Casbah” in the mall once. Sooner or later, nearly everything seems to become mainstream.).

I do nap a fair amount, because I get tired very easily, although it’s usually not quite so urgent as it used to be. I still have “puppy” episodes when I just can’t keep my eyes open, usually after someone has come to visit (sometimes *while* they visit, if it’s more than an hour). I can’t do too much in one day, either – a couple of doctor appointments in one day wipes me out the next day.

10/20/07

We’re dog-sitting Jasmine this weekend, and having a great time watching her and Robin play.

Thursday I saw the surgeon again, and it looks as if I’ll be taking more time off than I originally planned. It’s likely that I’ll be off an extra two weeks on top of the original four that I planned for, and depending on how I’m doing then, he’ll decide if I am ready to return to work. In part, the change is because I misunderstood what the doctor meant when I asked how long recovery would be. He said it would be two to four weeks before I could become active, and six to eight weeks for full recovery. I didn’t explicitly ask when I could return to work, but thought that becoming active was equivalent to working. In reality, it meant (almost literally) starting to use my arms again for more than feeding myself and holding books or the TV remote.

The good news is that he told me this week that I can start increasing my activity, with a couple easy exercises and using my arms more. There’s one thing I’m absolutely forbidden to do, which is to push anything (and I still need to limit the weight I lift and the force I use for pulling). I’m still having the sandpaper sensation, although I think that it has diminished a little bit. Over the last week, I’ve been having more trouble sleeping, both at night and during the day, and even taking the maximum dose of the pain pills doesn’t seem to help – it takes care of the pain, but doesn’t make me as sleepy as it did originally. So I’ve been trying to avoid sleeping during the day as much as possible in order to keep on a normal circadian cycle.

Also, he did say I could drive if I can do so comfortably, but only short distances and duration of the trip; and to avoid having to make sudden movements. i don’t feel ready to try it yet, hopefully soon.

So things are getting better, slower than I expected, but still getting better. I even did a little bit of beading (stringing only) yesterday and that seemed fine physically, although I could only focus for a short time.

I’m going to try posting more often as I have anything worth writing, as the typing does seem to be going a bit better.

Julie

05
Oct
07

October 5, 2007

Yesterday was a very long, tiring day. I didn’t realize just how long and tiring until this morning, when I woke up after sleeping 12 hours and still felt as if I needed more sleep.

The first appointment was with the reconstruction surgeon, who saw the tote I was carrying and immediately bawled me out – I said “but it’s way less than 10 pounds. . .” and he said ‘doesn’t matter, make your husband carry it!” He specifically mentioned some things that I hadn’t even considered – I’m not supposed to open self-closing doors, because they have enough force behind them that I’m probably pushing more than 10# of force; reaching for something that is well under 1# and picking it up, because essentially it weighs more held away from your body than closer to your body (obviously not the technical physics explanation for this, but it gives the basic idea); and combining actions, such as pushing and reaching at the same time, when you’re overtaxing muscles because they’re having to accommodate both demands with the same muscles, which might be perfectly fine if you’re only doing one of them at a time.

But he admired his work, and said that everything was looking as it should – there’s swelling, but it’s normal for this stage of the healing process. In addition to removing the drains, I got my first dose of expansion – 50 cc’s per side (roughly a quarter of a cup, but the syringes looked like something with which you’d give a horse a vaccine). I could definitely feel the pressure as the fluid went in, and even this afternoon the chest muscles are still protesting at the stretching a bit.

The final pathology confirmed that there was no lymph node involvement, and that the two identified cancerous masses on the left were indeed cancer, but as well, it seems as if there was some cancerous component to the third mass on the left side – the original biopsy showed it as benign, but apparently some cancer cells were identified in the final examination. All were invasive ductal carcinoma, but the largest mass was 1.6 cm – I keep hearing different numbers for the different types of imaging (mammography, ultrasound, MRI – the largest lump went from being less than 1 cm to being 3.5 cm, and now back down to 1.6 cm), but I imagine that the actual physical dissection probably provides the most accurate result. Each lump was determined to be “primary”, which means that they each arose individually, rather than that the other lumps spread from one of the others.

The mass on the right was totally benign, which is definitely a relief – riddled with cancer as the sinister side was, the right side was dexterous enough to avoid it all together ;-}

Taking all the results into account (amongst the factors, the size of the largest mass, the estrogen and progesterone receptor status (positive on all masses), whether it entered the lymph system, the fact that it was multi-focal), the cancer was grade II (because of the mass size being over 1 cm, but less than 2 cm), but my overall stage is only Stage I. There is actually a Stage 0, for “in situ” types of cancer, that are contained within the duct or lobule (I think that’s the right word), a single mass that is smaller than 1 cm, and that is removed by excision and has clean margins – originally they had me pegged as a Stage II, which was because they thought the mass was larger than 2 cm, and because they didn’t know if the masses were part of the same tumor or not. So all in all, I had nearly the best possible outcome I could have had for having multiple lumps in one breast.

I have an appointment next Friday with my oncologist – the surgeon, who had already indicated that it was extremely likely that I’d have to have chemotherapy, said that the downgrade to Stage I probably didn’t change that likelihood, because of the increase in primary lumps.

In the meantime, I’m working very hard at not doing things – I even have Brian cut my food for me, unless it’s soup or something. But as soon as someone tells me I can’t do something, I absolutely *need* to do it!

Brian reminds me that at this time last Friday (6:00 p.m.), I was still in surgery. I’m very glad that I’m home this week!

Julie

03
Oct
07

October 3, 2007

Well, I thought I’d spend a lot more time reading than I have – even working full time and working on various arts and hobbies, I typically read 13 or more books per month – what joy, then, to have so much time (and so much enforced sitting around!) on my hands. Surely I can read at least twice that much, especially since I am not yet able to do any knitting, quilting, or beading. . .

It’s amazing how little focus I have. For the first two days, I could pick up a book, but reading and assimilating more than a couple paragraphs was just beyond me – looking at the pretty pictures in my beading and knitting magazines was about the level of concentration I had. Now I’m able to read a few pages at a time, but a whole chapter seems beyond me. Luckily, I have options – every single Godzilla movie is on cable’s “On Demand” playlist. Not being able to have a real shower makes me feel like stomping things, too.

Brian did wash my hair yesterday – that helped immensely. Thank goodness I got my hair cut!

Sharon brought lunch and Jasmine over today, and I’m not sure which was better – the cherry crepes, or watching Jasmine and Robin playing. She’s only 7-1/2 pounds, and Robin is 40, but they wrestle and do kung-fu moves, and tear around the house chasing each other – it is hilarious. Jasmine is a master at playing keep away – we gave her a toy that Robin hadn’t played with for months or more, and she teased him with it until he absolutely *had* to have it – but she would just turn her head slightly and he couldn’t get it from her.

I’ve got at least three appointments tomorrow, so it’s going to be a long day. I hope that the drains and bandages will be removed – or at least that the bandages are reduced to a thinner layer. I can’t even touch my sides, and it’s starting to get itchy under there. I’ve never had a cast, but I imagine it’s rather like that.

Later,

Julie




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