Posts Tagged ‘chemo brain

06
Jun
10

Oh yeah . . .

Did I leave off baldness?

I can’t believe I forgot baldness.

And dried-out mucous membranes.

And fingernails that look like something off Frankenstein’s monster.

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20
May
10

My First Video (or not)

In lieu of anything illuminating or deep today (because believe me, it would take a major drilling effort to find anything deep under the load of fatigue and chemobrain riding me today, and yesterday), I’m including my very first video that I’ve ever taken.

The actor does a great job, the videographer needs some training.

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

Well that’s revolting – I need to pay an upgrade fee to load videos onto my blog. Forget that!

Instead, here are a couple pictures of the dog, the cat and the quilt:

Ahhh . . . the cool hardwood floor!

Robin is definitely a hot dog, and he prefers to lie on the linoleum or the hardwood floor to stay cool, even during non-warm weather.

Jeremy snuggling with my new quilt

This is the quilt that Evelyn made for me – I still haven’t gotten any of the original pictures off Brian’s camera that show the whole thing, so that post is still coming up.

That’s it for today, kids!

18
May
10

Three Scans for the Price of . . . Three

But first, results from last week’s scan!

Good news all around – the largest tumor has shrunk from 9.4cm down to 7.9cm; several of the other tumors also have shrunk; and some that haven’t shrunk outside are becoming necrotic inside, which probably means that the Avastin is preventing the blood flow leading to them.

So, yay!

As well, at 2 months, what they’re really looking for is to make sure that the tumors aren’t still growing, but often what you see at that point is that they’re stable, neither growth or reduction. The shrinkage, therefore is actually very good news.

So, double-yay!

My spleen is slightly enlarged, which isn’t of concern yet – Doctor Medici says there are blood vessels leading from the liver to the spleen (I think this is how it went, chemo brain is to blame if I’m saying wrong, not Doctor M), and they can get a little congested. At any rate, it is possible that it is lowering my red blood count, and may in the future have an impact on whether I can continue with this chemo regimen; but for now we want to go with it for as long as my body will tolerate it, since it’s having such good effect.

I also have some pleural effusion in my left chest cavity – a build-up of fluid in the space between the lungs and the chest wall. I believe this accounts for the chest symptoms I’ve been having, and also for the anxiety attacks, which I’ve been having a bit more often. Dr. M. doesn’t believe that, but I do – I know my body, and I’ve associated the anxiety with the feelings of pressure or compression in my chest, and the feeling that I can’t breathe as deeply as I want; and that was before I knew there was something in there.

However, the thing that most concerned Doctor Medici was the swelling on my left hand from last week. He was concerned that there might be hidden heart damage or a blood clot in my arm that was causing edema, and so he wanted me to have a vascular ultrasound and an echocardiogram in the next couple days.

I went in to the infusion suite and had my chemo, and when I came out, Nurse K. had scheduled me for the ultrasound at 3 pm and the echoCG at 4 pm. Fortunately, our savior driver cousin Jeanette was able to stick around and take me back to the hospital, and even had some personal business there herself, so that all worked out.

The ultrasound was given by a student, and one of the staff doctor/technicians was there to walk her through it. I was hearing comments like “Where is this thingy?”, “Show me that thingy,” “Show me that thingy in color.” I was seriously wiped out from the chemo, and all I wanted to do as I’m lying there was sleep – surprisingly, I ended up feeling pretty rested after that, so maybe my steroid high was kicking in.

They ended up taking a close look at the port and its environs, and the doctor/technician asked me a lot of questions about it. They ran over into my other appointment by about 10 minutes, and were looking intently at the results of the scan when I came out of the room. I had to wait a few minutes for the next test, even though I was late; and while I’m in having the echocardiogram, the ultrasound doctor stuck his head in the door and said:

“I just got off the phone with Doctor Medici, and he wants her to have a CT scan this evening – we’re getting it scheduled now.”

I called Jeanette to let her know that she shouldn’t wait any more, but didn’t get hold of her, which I figured meant she was out in the waiting room. We finished the eCG, and while I was changing the eCG doctor went out to talk to the other doctor. When he returned he said that the CT scan was scheduled, and I should just head right over there. When I got to the lobby, sure enough there was poor Jeanette, waiting patiently – I really appreciate the fact that she took so much time out of her life to drive me around, and to wait so long, but I didn’t know how much longer it was going to be, and figured she needed to get home to her family. After she left I called Brian to fill him in, and have him pick me up after the CT scan.

Once I was over in the radiology department, I got in pretty quickly. Nurse S. asked me why I was there, and I had to confess that I didn’t really know. All I could do was speculate that the ultrasound had detected a possible problem in my left chest/arm area, but nobody had told me what was specifically being looked for (and yes, I did ask the eCG doctor, who was the only one there by the time I was done with that test, but he didn’t know anything about it, just that the scan had been scheduled and where I was supposed to go). So he (Nurse S.) went to talk to the CT doctor, and it turned out that they were scanning the left chest and arm to look for venous clots, as I had guessed. I was still confused with why they needed a new scan, since I’d just had one on Thursday last week, and it was after the swelling symptoms had been and gone; until Nurse S. reminded me that normal chest CT scans are done with both arms above the head, so the arm is not imaged. Ah, of course.

Brian was waiting for me as soon as I was done, and we came home and made dinner, and were hanging a couple new pieces of artwork on the wall when the phone rang.

Dr. Medici was calling to let me know that the ultrasound doctor had detected some apparent slowing of bloodflow into the arms, which seemed as if it was coming from the middle of the chest; this is why Dr. M. requested the CT. The CT however, didn’t detect any clots or other problems, so unless the eCG results come back with something odd, everything seems as it should.

So that is the story of my big medical day, and My Three Scans.

17
Apr
10

Working it out

If someone asked me about myself, I would say that I’m a reader, a writer, a crafter; a gamer, a giver, a geek; a happily married wife, a dog-mom, a cat-mom; shy but outgoing, cynical but optimistic, intellectual but silly; and probably much more.

What people usually want to know is “What do you do?”, which would garner much the same response.

What people usually *mean* is: “What sort of job do you hold?”.

I’ve never been one who defines myself by the specific job I hold – I have at various times been a receptionist in a dental office, a dog trainer, a purchasing agent, and most recently, a jack-of-all-trades. Or if you want to make it sound better, feel free to say “Renaissance Woman;” my latest job description for the company I’ve worked at for nearly 10 years includes event planning, purchasing, database creation, data collection and management, reading/writing/editing/proofing, shipping, inventory control, website content management (and defining design elements), and lots of other varied tasks.

It’s much better to say that I define myself by *how* I do my job – that I take pride in being organized, efficient, accurate, dedicated, and flexible. In many ways, these are the elements of how I live my life, and apply to all the other ways in which I do define myself.

Over the past three years, as I’ve gone through treatment for two bouts of cancer, I have seen some of these qualities suffer. And just when I felt as if my work mojo was returning, I get slammed with liver mets.

Seriously? The treatment is worse than the disease at this point, and it’s not the disease that has prevented me from working, but the treatment itself. After planning to work part-time for a couple months while I evaluated how difficult the treatment was going to be, it was a real blow to discover that after just two treatments I was completely unable to concentrate, retain details, coordinate multiple projects, or even keep track of accomplished versus outstanding tasks. Rather than put the company at risk because I was either too prideful or too desperate to feel needed, I determined that it was best if I take my FMLA time now, rather than later; that way they could get someone in to cover for me right away.

Emotionally, this was like a stab in the heart – not only because it meant that I had yet again lost hold of the qualities that are most important to me, both in my work life and my home life; but because, since I’m going to be in some sort of treatment for the rest of my life, it’s possible that I may never be fit to take my job back.

And even though I’ve been looking forward to retiring (we’ve been working towards the possibility of early retirement, maybe as early as 55 for me), all that free time was intended to be spent doing fun things. Currently, I have fewer good days than bad days on this treatment regimen (although the pain management may help with that), and I don’t have the focus or stamina to do so many of the things I love, such as knitting, beading, reading, training with the dog, etc.

Between the pain and the emotional devastation of feeling as if I’m no longer the me I choose to define myself as, I had a really bad week last week.

The last two days, with the pain under control, has seen a rebound of my more optimistic spirit, so even though relinquishing my job is still a bitter pill to swallow, I do hope that either this treatment will stabilize and I will be able to get back to work; or possibly if this treatment is not being effective, a different treatment will not be so incapacitating.

And I have to say that hearing from so many people who understand or are simply being there for me has done a lot to help that emotional rebound. Thank you all so much!

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.

13
Apr
10

Chemo #3 – Days of whine and noses

The whine is mostly about a long list of side effects from the chemo – going in-depth on each one would be a very long, boring, and sometimes disgusting post. So instead, I will focus on the ones that are giving me the worst fits.

Abraxane, being a variant of Taxol (or Taxotere) has pretty much the same side effects. I’d hoped that having the different base would mean that some of the side effects would either not happen, or be less intense. No such luck.

By far the worst side effect is the pain. Muscle, joint, and bone pain all are omnipresent, and they get worse with the Neupogen and Neulasta shots to boost WBC and neutrophil counts. Bless Margaret, a lady I have yet to speak to other than by e-mail, for turning me on to the wonders of Claritin. I took a Claritin Friday instead of my usual OTC generic Zyrtec allergy pill, and had a nearly pain-free day. Saturday morning I had a Neulasta shot (because there’s two weeks between chemo 3 & 4; Neupogen is for when you have chemo every week). I checked with the oncologist about using the Claritin instead of the Zyrtec, and he said he’d heard anecdotal evidence that it helped control the pain with Neupogen shots.

Apparently it doesn’t work so well with the Neulasta shots, as Sunday and Monday I have been back to the incredible relentless pain; with the Neulasta it tends to focus in my long bones (femur, humerus), although I do have some joint issues in shoulders, elbows, knees, and hips as well. I’ve been taking at least two hot baths a day, usually with Epsom salts – that will temporarily relieve the pain. Brian massaged my ankles/knees/thighs and lower back last night, and that helped while he was doing it, but as soon as he finished, it was totally back.

I’m trying to get in a little bit of exercise each day, on the theory that if I don’t use it I’ll lose it; and in hopes that it will help with the pain. Yesterday I walked down to the mailbox with the dog, and it wasn’t a sure thing that I was going to make it back to the house – it completely exhausted me. I would say that the movement did help briefly with the pain. I also try to move around the house and go up and down the stairs as much as I can; although I got to the bottom of the stairs yesterday afternoon, and couldn’t go up, but couldn’t make it back to my chair. I sort of collapsed with my knees on the second stair, my forearms on the fourth stair, and my forehead on the fifth stair. Brian found me like this, and retrieved whatever it was I’d wanted from upstairs. He offered to help me back to my chair, but I was being stubborn and said “No, I’ll get there eventually”. And I did. I think he checked on me a couple times, though.

The other real PITA thing is all the problems with my nose and sinuses. I get bloody noses (mostly just a tinge of color, but indicative of more and worse to come). I get extremely congested, and can’t clear my nose, especially if I’m laying down. I use a saline/baking soda flush a couple times a day to help get it cleared out, but woe is me if I don’t do it at all. It’s like having a bloody cold. Yuck.

I guess the good news is that the flushes have become easy to do since I have to do them so often, so my reasons for not doing them just for my allergies have all gone by the wayside.

Oh yeah, and the mouth sores – those I thought I could avoid by having ice chips before the abraxane – it certainly worked with the adriamycin and the taxol; they’ve gotten better, but still hurt and make it difficult to brush my teeth.

Did I mention the exhaustion? So tired I can’t keep my eyes open, but often not sleepy enough to sleep. I’m not sure if it’s this that’s ruining my concentration, or early onset chemobrain. I’ve tried knitting on a hat I’ve had in the works, and keep messing it up. What the chemobrain doesn’t impact, the peripheral neuropathy does (thanks to adding in the Avastin this past week).

So, there, I ended up whining about more than I’d intended. I’m hoping that the weather is going to warm up some this week so maybe I can go lay in the backyard in the sun for a bit. I’m bored, mostly because I don’t have the focus or stamina to read, knit, bead, play games, etc. I still hold that, if I were retired, and without having to endure treatment of any kind, that I wouldn’t be bored at all. And indeed, when I’m working on a piece of knitting, or reading, or stumbling down to the mailbox, I’m not bored. It’s all the time that I spend unable to do any of these things that I am bored. Sadly, even sleeping is only good for a couple hours at a time. And it’s really bad when I am awake at night. Then I can’t even pester Brian.

I have been watching some movies, recently. I finally watched “The Perfect Storm” and “The Shipping News”, and rewatched “A Midsummer Night’s Sex Comedy” by Woody Allen. Bless you, Netflix!

29
Mar
10

Chemo #1 – It took two nurses to hold me down. . .

Which sounds a lot worse than it was.

Due to having had two previous ports in the same spot on the right-hand side of my chest, the surgeon decided not to even try to put one on that side, which left her with the *left* side of my chest (just checking, really, that *I* can still get it right – I feel incipient chemo brain slithering through my grey matter, and yes, in this case, left *is* right!).

Because of the additional lumpectomies/chest excisions on the left side when I had my recurrence, there’s a lot of scar tissue on the left side also, so she had to place it up and back towards my armpit. Being in this highly inaccessible tube (anyone who gets that reference is my geek-god (or maybe freak-god) – I can only think of one for sure, and another two possibles. . .), it was very difficult for the nurse to access the port. Plus there was edema built up around it, so Ll & R. dragged the chair out into the middle of the infusion floor, had me lie back on the recliner, and R. held down the tissue around the port while Ll. accessed it. After the chemo was all over with, R. managed to get a lot of the excess fluid out of the area, so not only will it be easier to get to this Friday, but it has also made it easier to sleep on my left side.

Saturday was actually pretty manageable – we went out to celebrate our 13-year anniversary at The Melting Pot (what? melted cheese, melted chocolate, does it get any better?).

Saturday night, though, I went to bed at 10:00 p.m., climbed out of bed at 1:00 p.m. Sunday, slumped down to make some coffee and sit in my recliner, and after about 3 sips of coffee, fell back asleep for another 3 hours.

And my hair hurts.




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