Posts Tagged ‘driving

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.

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18
Apr
09

The Day After . . .

. . . my last chemotherapy.

This one has hit me pretty hard – I’m having a lot of pain and quite a bit of stomach/intestinal action, and my chemobrain seems to be pretty bad, too.

Today was one of the first trips out of the house that wasn’t for a doctor appointment in a long time. I had Brian take me to the grocery store today, because there were a few items I just had to have, but the places I usually order online don’t carry them. He would have come in with me, but I assured him it would only take a few minutes, and that I knew exactly what I needed and where to find it.

Of course, it was all being remodeled, and everything was moved around, so I ended up spending a lot longer pushing a cart than I expected. I finally found everything I needed, plus a couple impulse buys, but by the time I was heading for the checkout I banged my cart into several stationary objects. Guess it’s a good thing I didn’t drive the car.

Typing is not working very well right now because of the increased peripheral neuropathy symptoms in my fingers, so I’ll just say that I’m happy to have finished with chemo, and I’m looking forward to getting through the last few weeks of feeling awful, and finally get back to real life!

04
Apr
09

pneumonia vs. chemo

I’ve been really wiped out the last couple weeks – even though I started the antibiotic over a week ago, things were worse at the beginning of the week than before. As of yesterday, I felt about the same as I did last Friday when I was diagnosed, so the antibiotic doesn’t seem to be helping, which could mean that this is viral pneumonia.

I don’t remember if I went into this before, but pneumonia isn’t a description of a single illness – basically it refers to any infection of the lungs, usually involving inflammation and collection of fluid. It can be bacterial, viral, fungal, or parasitical. So even though I had a pneumonia vaccine in November 2007 that is good for 5 years, the vaccine doesn’t cover every possible source of infection – as a matter of fact, it only covers bacterial infection by the pneumococcal bacterium; and then only about a quarter of the varieties of pneumococcal bacteria out there. So even with its protection against the most common bacterial infections, there’s a ton of other stuff out there that could get me; and with the compromised immune system, even the ones that are covered under the vaccine could still be suspects.

At any rate, when we went in for chemo yesterday, the oncologist expressed concern that I wasn’t feeling better on the antibiotic, and that my white blood count was so low – however, he decided to proceed with the chemo, with strict instructions to report any increased chest symptoms immediately. And if I’m not feeling better by next week, he will probably send me in for another chest CT scan.

Even with the already low white blood count, but with a good neutrophil count (the bacteria-fighting white blood cells), he decided against having me get the daily Neupogen shots next week – they are one of the two ways of getting your bone marrow to start producing white blood cells. The other is only given when there’s at least two weeks between chemo sessions. However, the bet is that as of next Friday, when I go in for my !!SECOND-TO-LAST!! chemo, I will probably have to have them the next week. That’s kind of a pain, since I really don’t feel up for driving these days; fortunately Brian is usually working from home in the mornings, so it’s just a matter of struggling out of bed earlier than I usually can.

I’ve been sleeping a lot, although the last three or four days I’ve started waking up in the middle of the night and being unable to get back to sleep for 3 or 4 hours, but then sleeping hard until late in the morning. I’m not sure if that’s a good sign or not – I’ve been trying to avoid daytime naps since they’re probably one of the culprits (I was only up for 5 hours one day, usually around 8 hours most days for the last week and a half before that). But maybe it’s a sign that I’m finally going to start getting better?

But then there’s chemo. It really has sort of rocketed to my brain this time – I was talking to Brian last night and didn’t remember something that we’d talked about just 5 minutes ago. Hmmm. I’m having more stomach and intestine problems this time around, and the pains are already calling for the good stuff – the morphine. Fortunately I only seem to need it at night, since Tylenol is currently managing it during the day. But even sitting typing, I can feel the tingling in my fingers that means the peripheral neuropathy is escalating. Thank goodness I’ve only got two more sessions! Yay!

Thank you to everyone who is sending all the love, good wishes, positive energy, and prayers – I appreciate them all. It is both motivating and healing to know how many people care and are thinking of me. I think of you-all often, myself, even though I haven’t had the energy to make contact. Hopefully that will be on the mend soon ;-}

18
Jan
09

January 18, 2009

This was an easier chemo cycle – I don’t know if it’s because of only having the Taxol instead of Taxol and Avastin or some other cause.

I was, however, completely unable to sleep Friday night – at a guess, the vaunted “steroid high” finally hit me – I never had one last year, and definitely did not have one with the first session. I’m really hoping that this was an aberration, or that it is also due to having the Taxol alone, since only one session per month is Taxol only. On the other hand, since all my chemo sessions are on Fridays, I could do that Lord of the Rings movie marathon I’ve been wanting to do . . .

Anyway, other than that, some mild chemo brain, some fatigue that hit with some urgency, and a little bit of nausea (coincidentally, I was riding in the car when it occurred – car sickness, not chemo? I don’t usually have a problem with that, but who knows…), I’m doing pretty well. I’m planning on driving myself to the train station tomorrow, so we’ll see if that really happens.

Had a lovely visit with my Aunt Julia in Tacoma, she’s 93, and just an amazing woman! I hope I’m in as good mental and physical health, and have such a positive attitude when I’m her age.

13
Jan
09

January 13, 2009

Today is a much better day, but no, I haven’t allowed myself to go mess around with the sewing machine again. I did stop at the Sewing Room, and have decided what machine I want, if I actually decide to buy one.

I went shopping, so I don’t have to worry about that for a while – Costco and Safeway were happy to see me.

After the last couple days, I’ve realized that my “natural” organizational talents are coming hard right now – last time I went through chemo, I had come off a major surgery and was only working part-time at home, so if I wasn’t my usual self it wasn’t such a big deal. But working full-time and being able to accomplish anything is going to be a challenge; so I’m spending a little time up front to focus on getting myself a system that keeps me on the right track even on days when there *is* no right track.

One thing that has me thrilled to the depths of my geeky little soul is a new project – my boss (who is the most awesome!) has focused on giving me long-term projects for the duration – as long as I can meet any incidental deadlines on my regular duties, most of what I’m working on right now is stuff that is either data collection or will be implemented down the road. Under the second category, I’m starting to investigate how to convert our style-based FrameMaker documentation to structure-based documentation; which involves learning XML, and will also require determining a “tree” structure for the documentation. Is it sad how pumped I am about this? The last thing (work/techie-wise) I was so excited about was learning how to design databases.

Because of the economy, we’re not doing a lot of events this year, so most of my time that would normally be spent on event-planning/preparation will be spent working on this project, plus a couple others.

So I’m hoping that this tendency towards rapid disappearance of chemo-brain holds true for the rest of the treatment – I really hate the thought of spending most of the next four months in the whacked-out state I was in the last three days. If I’m able to drive myself to the train station, I’ll be happy. Getting on a train going in the correct direction will be a bonus.

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

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




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