Posts Tagged ‘pain

23
May
10

Brian’s Knee Update, More Photos

Brian’s surgery on Friday went fine, and although there was a significant enough amount of pain for Brian to actually resort to the prescription pain pills on Friday evening/Saturday morning, by Saturday evening he was down to just ibuprofen.

It just amazes me that they can fix knees with three little holes in an in-office procedure these days – when my first husband had knee surgery, he was in the hospital overnight (at least), and has a big scar running down from the top to the bottom of his knee – I think it’s around 6″ long or so.

Thanks again to cousin Jeanette for taking Brian over and waiting with him while he had surgery. I’d planned on going with them, but as the week wore on, it became obvious that the chemo was still hitting me pretty hard. So I waited at home for them.

And because I don’t really have the brains this morning to blog about anything else, here are some pictures for your delectation.

Robin's definition of foot rest

And April the cat gets in on some of the action:

April's definition of back rest

We’re going to the ballet today, and I have to remember to wear a mask, since I’m probably immune-compromised at this point. I’ll know for sure tomorrow, but around all the kids, probably best not to take any chances.

02
May
10

Paging Dr. Fine, Dr. Howard, Dr. Fine. . .

In reality, this post is a tribute to Dr. Awesome, a naturopath whom I met last Thursday for the first time.

Well, she’d come up behind me the week before and touched my hat, asking if everybody wanted to pet it? Truly, the hat I was wearing at the time, yes, people do want to pet it. It’s made with mohair and poly eyelash yarn and is extremely soft and feels good both to the hand and the bald skull beneath; with short-row shaping so it swirls; and instead of weaving in the ends, I braided them together so it has a little tail, too. Lovely hat in shades of maroon and purple, but getting too warm to wear much any more.

Of course at the time, I didn’t know this mystery petter was Dr. Awesome, but it tickled me that she was so willing to feel up a complete stranger’s hat in the middle of the doctor’s office.

My main goal for Thursday’s doctor appointment was originally nutrition, with a side of stress relief, and pain management for dessert. That was, at the time I made the appointment, the order I was most interested in covering the subjects. As it turned out, after talking to Dr. Awesome for 5 minutes, we rearranged it to pain management, nutrition, and stress relief.

For those of you who read this who have been through cancer treatment, you may understand immediately what I mean when I say it is a relief to talk to someone who “gets it”, particularly a doctor who not only understands but who validates what you’re going through and provides immediate, concrete solutions to some of the problems. You can talk to fellow sufferers all day and it’s good to hear that they have had the same problem and what they did for it, and in many cases, it will be of help to you when you encounter the same problem – never diminish the power of what experience can do for you.

But I at least tend to dig into the depths of my head and don’t even bring up problems in group, not because I don’t want answers, but because the group isn’t all about *me*, nor should it be. There are probably 12 – 16 regulars, and for any of them to get enough of a chance to talk, we often have to limit the number of speakers, and sometimes the depth of the discussion.

So having a medical authority validate that what I’m going through is real, is normal for cancer patients on chemo, and most important, isn’t just in my head, and doesn’t *have* to be dealt with just in my head makes me feel whole heaps better.

Pain Management: make sure I take the pain medications *regularly*, not sporadically; and take the smallest dose I can get away with. This might mean taking a higher dose in the morning than I think I really need, because for the pain to be worse in the evening means that I’m not giving it enough attention during the day. Also, hot baths with Dead Sea Salts are good, massage is good, and possibly acupuncture in the future.

Nutrition: Now, we all know the “Big C” is the cancer, right? Well, once you have cancer, there are other contenders for the title. Chemo might be considered the “Middle C”, since it is at one and the same time the treatment for the “Big C”, and the cause of the “Low C” (back into euphemism territory, here). I still think of the “Low C” as being the “Big C”, because it is much more immediate and pressing than cancer, and can make life pretty miserable. The pre-chemo drugs, the steroids and anti-nausea drugs they give you, and the pain medications I’m on all contrive to keep me from moving on. So Dr. Awesome prescribed something a lot less virulent than the clean-out liquid used for colonoscopy preparation, although she gave me that option if I wanted fast results. I chose the non-fireworks route. So now I’m thoroughly revising my menu, making sure I get lots of fresh fruits and vegetables, lots of whole grains and fiber, coffee (yay!) and supplementing with this product that makes moves smoother than an Italian gigolo.

And finally, Stress Relief: Exercise is a component of all of the three topics I initiated with Dr. Awesome. Exercise can reduce pain, if not overdone; it can help the diet and supplements do their nutritive acting; and it can help with stress relief. But for chemo patients, taking the dog for a walk even around one block may not be possible except when you’re at the end of a two-week break. Especially shortly after chemo, exercise may mean getting out of your chair and walking around the house once, or making that trip upstairs to get the medication bottle. And some days, it may mean standing up out of the chair for a minute or two. One’s body is under attack, and while it’s good to push the boundaries a little bit, pushing them too far, or having too high of expectations about what your body can do when it’s just out of chemo is bound to create a feedback loop that eventually immobilizes you by trying to do what you were able to do two days ago, when you were on your 2-week break, but since you just had chemo, there’s no physical way you can do it.

I’ve been beating myself up because my focus is so bad, and I have always had great powers of concentration. I’ve been taking it as a personal failure that I am not able to keep my mind on something for more than 15 minutes. With one sweep of her hand, Dr. Awesome pushed that self-blame out the door, and helped me see that I can live with it, and even manipulate it to my advantage. It isn’t a solution that is going to allow me to be able to work better, as that still demands unbroken sweeps of time to focus on a particular project; but it means that I don’t *have* to focus on anything for longer than 15 minutes. Pick up my knitting, and if my hands are cooperating right then, work until I feel the focus slipping. Then put it down and read a book, or play a game on my phone. Write a blog for a while, and if I feel like it, do some beading or quilting. As soon as I feel the attention slip, set whatever it is down. And try just resting instead of sleeping. Sometimes, just sitting thinking rather than sleeping is enough rest to let my body recoup the energy for my next couple rounds of knitting or reading or whatever.

Brian was there for this appointment, and although he has never indicated that he thought I was being a drama queen or exaggerating my symptoms, Dr. Awesome’s immediate understanding and recommendations of solutions tailored to my specific case made him understand just how difficult it can be to look physically well on the outside, and yet to feel like crap on the inside.

So all hail Dr. Awesome! She has empowered me to quit being my own worst enemy, and feel much more like a human being than a lump of bruised potatoes.

Truly, I have the fortune to be surrounded by so many wonderful, caring, knowledgeable doctors and nurses that I just wish everyone with cancer could be so lucky as to work with my team. I would not hesitate to recommend a single one of them.

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!

12
Jul
09

Long time, no post

About three weeks ago I was talking to one of my friends at work, who said “You know, you *sound* like you feel better.” I realized at that point that I *did* feel better – and had for at least a week or so. I’m working full-time, and actually have energy when I get home to do stuff besides sit and read – and except for a migraine¬† this past Friday, have been feeling pretty darn close to normal.

We had friends visiting for the Fourth of July weekend, and we had fun, although I wasn’t able to do as much as I wanted to. We had the hottest weather of the year so far that weekend, and I don’t do well with heat. I used to live in Livermore, CA, where it would stay in the 90s to low100s for weeks at a time; and I worked outdoors at a dog kennel to boot. Never had a problem with the heat. A few years after I moved to Portland, I started getting sick if I spent much time in heat over about 85 degrees. I get a headache that feels like a migraine, nausea, and lightheadedness. If I don’t get somewhere cool fairly quickly, I actually get worse than nausea, and start vomiting.

Of course, our main plan for the weekend of the fourth involved going to the Waterfront Blues Festival. We got to the festival on the afternoon of the 3rd, and I was only able to stay for a bit longer than an hour. Brian ended up taking me home and driving back down while Matt and Nancy stayed and danced Zydeco. Saturday I didn’t even try going – there was just no way I was going to be able to enjoy it, and we’d bought tickets for one of the Blues Cruises on the Portland Spirit – I just pictured being stuck on the boat, sick, for 2 or 3 hours, and decided that I didn’t want to subject them or myself to that. So I spent the day and evening at home, and tried to get Robin to woofle whenever he heard fireworks – that worked for the first hour or so, and then he spent the rest of the time under my feet.

Sunday was considerably cooler, just mid-80s, so we went down to the Saturday Market and wandered around. After a couple hours of that, it started getting too warm again, so I cruised on up to Powell’s City of Books, where Brian, Matt, and Nancy were going to meet me when they were done at the Market. On my way up, I noticed that my back was starting to hurt – I haven’t had problems with it for quite a while, but I couldn’t come up with anything I’d done specifically to set it off. Once I got to Powell’s, I broke my book-stash-diet – there were several sequels to books I had read that I just *had* to have. Matt and Brian sat in the cafe while Nancy spent her time in the Drama section, and I was in there looking at graphic novels. We all met an hour later to check out, and drove on up to NW 23rd to wander around. We walked on down to Marrakesh, where we enjoyed a delicious dinner, although I learned that my body hasn’t completely recovered, because I was stiff and sore. I’m pretty sure that didn’t help my back any.

This past week, my back has been bothering me, mostly both sides of my lower back. It would stiffen up and be painful after sitting at my desk or in my recliner in the evening, but it seemed to be clearing up slowly. Thursday morning, I got up at 6 a.m. to go pee, and it seemed to be completely fine. When I got up at 8 a.m., my right-side lower back screamed at me, spasming so badly I could hardly walk. As of today, it’s down to about a 3 on the pain scale, from around a 7, and I’m trying to move around a lot, so that I don’t spend too much time sitting in any one position.

In some ways, I’m pleased to have this kind of problem, instead of being inundated with poisons, or recovering from surgery or chemo. It seems pretty normal.

07
Jun
09

Foreign Objects and Me

The surgery to have the chemo port removed was very quick – indeed, we spent more time between when my appointment was scheduled and when it actually started (1 hour) than we did undergoing the surgery (20 minutes, including changing into/out of the gown).

The numbing agent was just injected, and the surgeon started cutting before it had completely taken effect – it was very quick to get me numb (30 to 45 *seconds*), but she was quicker still. The first thing she did was cut out the old scar (it was very thick and red from having been cut open 3 times already – 2 ports in, 1 port out), and she told me that this would help keep it “pretty.” Considering the number and size of scars on my chest, and my displeasure about the appearance of my right-side implant, I can’t say that I think this is really going to make things prettier.

After the numbing agent kicked in fully, all I could feel was tugging, and I didn’t feel the tubing being dragged out of the vein at all. A few stitches, steri-strips, a cotton gauze pad, and some tegaderm later, I was dressed and Brian was driving me to Dairy Queen for the obligatory Heath Bar Blizzard after a medical procedure.

Friday afternoon the numbing agent seemed to be still working, because I didn’t really feel much at all. As the evening wore on, the pain grew, and it looked like quite a bit of blood had leaked. The pain kept me awake a long time that night. I was using ibuprofen because it seems to help the most with pain for me, but it wasn’t enough to let me sleep. Eventually out of sheer exhaustion I did fall asleep around 3:30 a.m. Saturday day was much the same painwise, until later in the afternoon it faded considerably. That evening and night, though it got bad again. So far today, it’s been pretty mild – I can take the tegaderm and cotton gauze off this evening, so we’ll see if that helps.

So the number of foreign objects in my body has now been reduced by 1/3.

18
May
09

Here yet!

I’m back at work and exhausted, which is why I haven’t posted for such a long time. Besides exhausted, I’m feeling much better, with my other worst symptom being the muscle/joint pain – Tylenol usually keeps it under control during the day, but I’m still needing something stronger at night.

I will post again, hopefully this weekend.




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