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.

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.

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.

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!

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.

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.

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.

One of these days . . .

. . . I will not only not feel yucky (that’s a technical oncology term, I’m sure), but I will actually start feeling good, instead of just feeling less bad.

This last chemo hit pretty hard – I’m still having some intense chemobrain moments, although they’re getting farther apart. The normal stomach/intestine action going on; the pains are pretty bad (I’ve had to use “the good stuff” to get any sleep since Monday); the insomnia when I’m not in pain is moderate; the fatigue seems excessive (presumably related to anemia); but the worst thing I’ve got going is the peripheral neuropathy.

It’s hard to type because my fingers don’t really want to do what I tell them to do, and I make a lot more mistakes than usual. The tingling and numbness is the obvious part, pretty much constantly there for now, but when I try to do anything that requires detail work or lots of movement, the clumsiness and lack of control is noticeable. I am even having a hard time knitting, even on big needles, and knitting is so second-nature (kind of like typing) to me I often don’t have to really watch what I’m doing.

The thing I’m most worried about is that it’s gotten so much worse so quickly. Typically by the week after a chemo it had faded to nearly unnoticeable levels – this time it’s even worse than it was early in the week. In some cases, it never goes away; or it can take as long as a year to go away. I’ve also read that the symptoms may not even peak for 3 – 5 months after the last chemotherapy.

But just today I was reading The Hotel New Hampshire by John Irving, and came across this:

“Human beings are remarkable – at what we can learn to live with,” Father told me. “If we couldn’t get strong from what we lose, and what we miss, and what we want and can’t have,” Father said, “then we couldn’t ever get strong enough, could we? What else makes us strong?” Father asked.

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 ;-}

Bacheloretting, briefly

Brian has flown down to visit a friend who lost a sister to colon cancer, and then is going to visit his Mom and help her out with some things she can’t do herself, so I’m alone from last night through next Thursday.

Brian almost didn’t go because he was worried about leaving me alone right after chemo – I reminded him that the last time I had chemo he left me alone for a few days while *he* went on our normal family Christmas visit, and the worst thing that happened was that I fell up the garage steps and strained one of my arms when I grabbed the door handle (only the door wasn’t shut tight, so the door swung open and pulled on my arm, only I had just had my mastectomy 2-1/2 months prior and neither arm was supposed to be used, lifted, pulled, etc.).

Somehow, that didn’t reassure him.

Then I told him that Sharon is right across the street, and has promised to check on me, and give me rides if I need any. Also, I had suggested that I could call Cathy if he *really* was worried about it, and that I was sure she would come stay – he decided that I would probably be fine, since I’m pretty sedentary (read: totally wiped out) after chemo anyway, and that the worst trouble I could get in would probably be spending too much time in my recliner.

As it turned out, I was on the phone with Cathy last night, and when I said Brian was out of town, she immediately offered to come stay – so she’s coming down today, and we’ll probably do all sorts of arty/crafty things for a couple days. When I’m not sleeping that is. I’m just about to go work on my quilt, but decided I wanted to tidy up my office a little more – after all the sorting I’ve done I’ve got a lot of papers relating to crafting that need filing in binders.

I may do a Lord of the Rings movie marathon; or who knows. I have to say, the bottle of port is tempting me, but the way my stomach feels, it’s just going to have to wait.

Had my neulasta shot this morning, and already the pain is starting, so I guess it’s time to go take something, and see where the day goes from there.

February 19, 2009

Well, not really a lot to report on myself – same ‘ole chemo problems, different day (actually, most days, but at least I’m getting in a variety).

Robin is doing fine, we saw the vet last Friday, and he (the vet) talked to us for about 45 minutes about whether there was anything we *should* be doing – short of having massive neurological testing, including MRIs and CT scans, we probably aren’t going to find out anything unless he has another “seizure”. The vet suggested that this could have been a “focal motor seizure”, as opposed to a grand mal seizure – the difference being that the focal motor seizure is a disturbance that affects just a small portion of the brain, in Robin’s case it would be a portion of his motor center, because it was just his hind legs, nothing else; whereas a grand mal is a disturbance that locks up the whole brain.

At any rate, it could have been a one-off thing, or if it repeats, we may be able to track down a cause. The vet mentioned that a certain number of dogs develop epilepsy as they age, so it could be the onset of a type of epilepsy, or epilepsy that hasn’t developed fully. He also brought up brain tumors, either benign or malignant, but said that it is unusual to see them develop in a dog as young as Robin.

On Tuesday evening, we did end up taking Robin to Dove Lewis for a totally different issue. Our dippity-do-dawg has the habit of bouncing and barking, and sometimes running after, the cats when their collars jingle. He also has the bad habit of doing this while he’s eating (I think the cats jingle on purpose when he’s eating, and their nefarious plan nearly worked). So Tuesday evening, he did the bounce-and-bark while he had a mouthful of food, and managed to inhale a piece of food. He’s done this before, and usually after a bit of coughing and dry retching, he’s fine. But Tuesday night, he started vomiting, and continued to cough and retch every time he walked around. Finally I called Dove Lewis, knowing they were going to say “bring him in”, and sure enough, they did.

At least he puked and coughed in front of one of the techs, so they could tell something was really going on.

It was pretty busy there – most of the animals seemed to be in for nothing major, although at least one dog was in crisis. However, the doctors got Robin in and checked him over – couldn’t find anything in his trachea or esophagus, or behind his soft palate, but his esophagus was highly irritated and dilated. Got sent home with some soothing medication (I swear, it has a name that includes “sucra” in it, so maybe it is a placebo. But don’t placebos work by faking out the *patient*, not the caregiver? I mean, the dog doesn’t care whether it’s really medication).

Other than that, I’ve got my third February chemo tomorrow, then a two-week break. I’m ready for a break.

January 24, 2008

Chemo went well but slow yesterday – I ended up being in the chemo suite for 4-1/2 hours. It was extremely busy when I got there, and one of the nurses was filling in for the phone triage nurse, so they only had two nurses.

My white blood count was quite low, 1.2, when the minimum is 3 (not sure of the units on that); so I am officially immune-compromised. Basically, I’m supposed to avoid any sick people for at least the next week. I had to get a Neulasta shot this morning to help get my bone marrow producing more white blood cells. I had to do that after every chemo session last time, but this time it is on an as-needed basis. Since I don’t have another chemo for two weeks now, hopefully I should not need one next time.

The Taxol and Avastin both can cause bone and muscle/joint pain, and I’ve definitely been having problems with that – typically fairly low level (maybe a 2-1/2 to 3-1/2 on the pain scale) but sometimes escalating up to as high as a 6. Usually it *seems* worse at night – mostly because during the day I’m focused on work or whatever, and moving around, but at night I’m just trying to sleep. I had some Vicodan and some OxyContin left over from one or two of my many surgeries, but for some reason, although they knock back the pain for the most part, they’ve been wiring me, so I can’t take them at night; and even extra-strength tylenol isn’t enough to kill the pain at night. I can’t take any ibuprofen or nsaids because of the Avastin, which can cause bleeding problems, so the doctor gave me something stronger. I tried it last night, and it worked fine for the pain, and I slept pretty well for a couple hours, but then I was hit with some nausea – don’t know if it was chemo-related or due to the pain meds, but I basically didn’t get more than two hours sleep last night. Which so far has been OK, although I’m fading fast now.

My hair doesn’t seem to have reached the falling-out stage yet – I may go ahead and shave it to avoid having clumps falling out at inopportune moments; besides, I’ve decided that, since I can’t figure out how to have people sign my bald head like one would a cast, I’ll have them sign a hat, and then I get to keep it forever.

I’m taking it pretty easy this weekend, trying to conserve my energy so that I make it through the next week at work. Tomorrow some friends are coming to visit, the ones with the Dorkie – Robin is going to be ecstatic when Augie gets here. That should take some of the edge off *his* energy, thank goodness!

Not much else going on, and I’m pretty much ready to sack out. So goodnight, and have a pleasant tomorrow ;-}

March 4, 2007

Hi y’all -

Thank you, everyone, for the cards, calls, flowers, and visits! I am doing pretty well, for the most part. I had a lot of pain on Saturday while I was still at the hospital, but Sunday and Monday I had cut way down on the pain pills because I wasn’t having a lot of problems.

Sunday evening the waited-for event, some indication that my bowels were coming back online, made itself known, and I celebrated by reducing the pain pills even further. It all started to seem pretty normal, but then Monday evening, I hit a snag. Rather than constipation relieved by the stool softeners, I started having diarrhea, which I suspected was being exacerbated by the stool softeners because I’d reduced the amount of oxycodone, but not the colace. Suddenly, there wasn’t as much need to soften things, but it was still working on it. I also developed a mild fever of 100.4 degrees, which is verboten after surgery. Since it was midnight by the time I took my temperature, I didn’t call the doctor, and planned to call them this morning at 8:00, after having taken my temperature again so I could give them an accurate update. I also bumped the oxycodone dose back up, both because I was starting to feel a lot more pain, but also because I thought it had acetaminophen in it to help control the fever. Apparently I was wrong about that, but it certainly helped with the pain.

By this morning, my temp was back down to normal (which for me is typically right around 98 degrees).  The surgeon’s advice nurse said to call if my temp went back up, but otherwise I could just take some immodium for the diarrhea.

So far I haven’t had any indications that I’ve entered menopause, and have even been chilled, rather than too warm. Finally, last night while I was snatching cat-naps between cramps, I started sleeping hot again for the first time since my surgery (something I’ve done for many, many years). I had to strip the blankets off, take off my hat, remove my sweater, and pull my neck scarf off – all items I’d been too cold to go without since I got home from the hospital. Even though I started out by putting everything back on, I just kept having to remove it all again, so I ended up wrapping the scarf around my shoulders and pulling up one blanket.

I haven’t been focusing on eating all my points for Weight Watchers, mostly because it has been a bit of a struggle to eat much of anything.  I do get hungry, but it doesn’t take much to satisfy the hunger, and so I haven’t been worried that I’m overeating.  I probably am undereating, which is just as bad, but I had planned on taking one to two weeks break, and am hoping that at the least I will maintain my previous weight loss, and if I’m lucky lose some more, rather than putting on anything.  As of this morning, I’m at about the same weight I was at my last official weigh in.

The laparoscopic scars are small, and although I’m sure there are stitches inside, the outside was only sealed with glue.  As I’ve had to clean spots to give myself my Lovanox injections, I clean off the iodine – there are gleaming white patches amidst the jaundice-yellow overall tone of my skin currently.  I haven’t seen the scars for the reconstruction yet – my first post-surgery follow-up appointment is Thursday, and I can’t change the dressing or shower until then.  Fortunately my hair is so short that I don’t have to worry about trying to keep it clean – also, I still haven’t gone back to my excessively oily skin and hair that I had prior to chemo.  I’m hoping that part is a permanent change.

I’m about due for my next dose of pain pills, and am going to have a mug of boullion then lay down again.  I haven’t had a lot of focus so far, yet it’s so much better than the previous surgery – I can read, and although I don’t read much at a time, I *remember* what I’ve read so I can be right back into it when I pick up the book again.

Poor Robin is resigned to my being boring again – he follows me everywhere (I am still getting up and pacing around the house periodically), and collapses at the foot of my chair if I don’t get the foot elevated right away.  Sigh.

Julie