Posts Tagged ‘fatigue

16
Aug
10

energy, no mobility

I’m slowly regaining energy, but my mobility is still gone south. Walker, wheelchair, recliner, bed; with occasional dinner table activity.

11
Aug
10

Not Much Energy

Now that I’m home, I’m resting and sleeping a lot; even though it seems as if there’s all the time in the world to post, most of my time is spent either doing the above or trying to build back some strength. It goes so fast (the strength), and doesn’t ever come back all the way.

Congrats to Kristin on her new little boy; congrats to my dad for turning 90. Namaste to all.

12
Jul
10

. . . and Fuzzy on Top

If you compare it to the couple weeks *before* I started the anti-depressant, I’ve been pretty busy:

Cousins Greg and Jeanette came for a “just chatting” visit on a Sunday.

July 4th we went to our neighbor’s, Sharon and Gary, for Independence Day and had a fantastic feed. All four dogs were there and were generally quite calm about the fireworks.

Last Wednesday we had dinner at the Harborside with our friends Shawn and Hope. They’ve always got dozens of funny stories to tell.

Last Thursday Cathy came to visit, and took a picture of me nodding off as she was talking to me. She swears my mouth was not open!

The common ground that all these items have is that I was feeling better emotionally, and my stamina is returning, but that I was totally wiped out at the end.

But with a couple little tweaks in the meds, I think we finally have a winning combination. Too bad I’m scheduled to start chemo tomorrow just when I’m starting to feel good. We’ll find out if the “happy” drugs can hold up their end against the chemo.

In other news, I was scheduled to go to a memorial service for my aunt that died. A couple days before the memorial, I got hit by some sort of intestinal bug that lingered for another couple days after. Brian went and said it was a lovely service.

And a couple nights ago I had a fall. I’ve been using my library steps to climb into bed (but I slide off the bed directly to the ground). This is working pretty well, for the most part. I always pause to see where the dog is before I slide off, and he usually is already up and moving by the time I stop to look. I’m not sure what went wrong this time – all I know is that I must have stepped down on the bottom step, because I felt myself slip and had no way to catch myself. As a result I have a bruised toe that was just healing from having lost the nail (chemo-related); and bruised shin, thigh, and hip on my left side. Ouch!

I will report on the start of chemo – there is a chance that he and I may disagree and we’d delay it for another brief while; I’m quite intent on improving the quality of my chemo life, and he’s all yelling “Treat! Treat! Treat!” We’ll see who’s got the greater will power.

23
Jun
10

The Silence of the Cancer

On my little break from chemo, please don’t be surprised that I am being so quiet – only a little blogging, no phone calls or e-mails. Now that I’ve had time to quit wallowing in the cancer and its treatment, I’m wallowing in my depression. My normal depressive behavior is to do just that – withdraw and keep my feelings to myself.

Fortunately for me, I’ve got Brian here to help keep me sane.

I met with my counselor, Counselor Troi, today, and she took a lot of notes, with the end result that she doesn’t know how I’ve managed to go so long without an anti-depressant. So tomorrow I start one (sorry, the name escapes, me).

The bad news about that is that it’s going to physically depress me for a couple weeks – i.e., low energy, etc. Right in time to just about the time Dr. Medici wants me to start chemo again.

So how am I going to know if it’s working?

Also, Nurse Serenatia called today, and told me what I already knew – it’s going to take months to get back my energy to where it was – months I don’t have.

Thus ends the homily on depression for June 23, 2010.

19
Jun
10

Meeting with Dr. Medici

Well, the meeting went pretty much as I expected, although having been forewarned by my call to the triage nurse last week, Dr. Medici strode right in and took charge.

Basically, he agreed that the toxicity had reached a very high point and it was time to scale back – I think he was hoping I’d agree to a lesser dose, but I was having none of that.

Our agreed-on plan, then, is that I will call him each week to let him know how I’m feeling, and when I’m ready for my next chemo. At that point, we’ll decide on the drug and the dose, and see how it goes.

My goal, that I expressed to him is not to make sure I live as long as possible. It is to enjoy the amount of life I have left with Brian. If the quality of life is good, then maybe it’ll be a long time. If not, then it is what it is.

Right now I’ve got a minimum of 2 weeks before I have to decide, since Dr. M. is out of town through 4th of July.

16
Jun
10

A little beach party

Brian and I headed off to Newport on Thursday afternoon. It was pouring rain when we left, but down to overcast when we arrived. We settled in for the night, watching Happy Feet, and I went to bed early, as is my wont these days.

The next couple days were pretty days, Friday clearing up to be sunny but a little cool. Although I spent most of the day either resting or sleeping, we did make it out to dinner. We watched Shrek as our evening entertainment.

And on Sunday, once again I spent the morning resting or napping, but then suggested we go for a little drive up the 101, a drive being about what I thought I could handle. We drove up to just past Salishan, and turned around. Coming back down, Brian pointed out that I hadn’t eaten much that day, so we stopped at Tidal Raves. We’ve eaten dinner there before, and it was extremely good, so I was a little disappointed in my razor clams. But the floor show made up for it by having 3 Orcas playing just outside the windows.

Sunday was a pretty drive home, but, let’s say it all together, I slept pretty much most of the way. All in all, though, it was about spending some loving time with Brian, who gave me massages and took care of me. I just wish I could return the favor.

13
Jun
10

A Little Work Party

Last Wednesday, my friend Leah had arranged a little work-folks get-together. She came and picked me up, and then dropped me off at the door of Rock Bottom Brewery, where we met with Carrie W., Jenny, Kristin, Shi-Yi, and Wendy. Brian met us there, also, not only to say “Hi”, but as my ride home.

I enjoyed seeing and chatting with everyone, although I was pretty much wiped out after a little overp an hour. Thank you for coming, everyone who could make it; and I’m sorry some of you were either sick or had other plans already – hopefully we’ll be able to visit sometime soon.

Unless the doctor changes my chemo regimen soon, I may be completely limited to home visits, as my energy levels are so low that I sleep all night, and most of the day also. There is an open invitation to come visit, as long as it is arranged in advance; and with the caveat to please call before coming in case I’m having a bad day.

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.

06
Jun
10

Side Effects for your Delectation

I made up a quick off the tip of my fingers list of side effects that I’m currently suffering. This is to present to Dr. Medici when I ask him exactly what he means when he says chemo shouldn’t affect every day life. Again, this was just the list I came up with after 10 minutes thought:

Side-effects with Abraxane, Avastin, Neupogen, Neulasta

1. Muscle-and-joint pain (A, A)

a. Controlled using Oxycodone1/2 pill ~ 4 hours/day, Morphine Sulfate 1/2 – 1 pill ~ 4 hours/night. Replaces fatigue/inability to focus mentally with drug generated instead of chemo generated (or exacerbates it, possibly). Can’t drive.

2. Fatigue

a. Trying to get up and walk around the house periodically, carry weights, do some stretching
b. Mostly napping

3. Inability to focus mentally

a. Can’t drive
b. Can’t read, knit, quilt, bead

4. Peripheral Neuropathy, fingers, large toes, lips, tongue

a. Using L-Glutamine to control it, marginally successful
b. Can’t knit, quilt, bead, turn pages in books
c. Concerned about driving

5. Bone pain (N, N)

a. See 1a
6. Liver pain, occasional pains elsewhere in abdomen, that appear to be unrelated to intestinal pains

a. See 1a

7. Mouth sores

a. Can’t brush teeth using anything but finger and Biotene

8. Sense of taste corrupted – everything tastes like sh*#

9. Insomnia at night

a. Using Ativan, currently using 1 or 2 pills ~ 4 hours

10. Constipation

11. Rash on hands and now arms

a. Burns if water warmer that lukewarm
b. Feel scraped if I accidentally rub them against something
c. Otherwise, mostly just red and ugly

12. Runny nose

13. Bloody nose (Avastin)

14. Drooling at night when laying in bed

a. No problem if I sleep in recliner, otherwise causing skin problems on face.
b. Causes sore throat from breathing with my mouth open
c. Related to Periph. Neurop, mouth sores?

15. Nausea
a. Fairly mild
b. Controlled by Compazine

16. other

30
May
10

Sleepytime Station

I have been sleeping.

A lot.

Typically, with chemo on Monday, Wednesday and Thursday are big sleep days for me. This week, I spent most of both of those days sleeping, but also Friday I got up around 10:00, and went to bed at 10:00, after taking several naps.

Today, guess what? That’s right, yet another day of major sleep. I got up around 7:30, fed the dog and myself breakfast, then fell asleep in my recliner until 10:30 (I only stirred around so Brian could feel like he was allowed to make noise). I had a glass of iced tea, closed my eyes, and woke up at 1:15 when Brian headed off to Costco and Petco. I then slogged my way upstairs, where I lay down from about 1:30 – 5:30. We had to put my library steps next to the bed because my knee won’t take climbing on the bed using the footboard.

While I was down at various times during the day, I slept through the dog going ape over the neighbors across the street opening their garage door (now *there’s* a threat!), through Brian cleaning spots where mud got tracked in, Brian putting groceries away, and a few other noisy things going on. The thing I was having trouble sleeping through is some liver pain – I don’t know if it’s the good kind or the bad kind. The good kind would be the “tumor’s shrinking” kind, the bad kind would be, well, obviously, the other kind.

I even slept through more weird dreams. I’m not sure I want to remember them, so maybe it’s just as well that I seem to have a block against remembering.

But tonight I ate dinner (I often haven’t been having dinner, usually just a late lunch), and I’ve bumped up my water intake by drinking a cup an hour. I’ve been feeling dehydrated, and I suspect all the sleeping isn’t helping.  But here I am at 9:30, after watching Men In Black, ready to go to bed. I’m trying to stay up until 10, but am not sure that’s going to happen.

Barely managed it, though.

26
May
10

What Dreams May Come

I’m not so concerned about those *after* I have shuffled off this mortal coil as I am taken aback at the intensity of some of the ones I have under the influence of either chemo drugs, pain medications, or the combination.

I usually don’t remember them, mostly I remember bits and pieces (this one involved a lost dog somehow, or that one was a scary one involving people being tied up, possibly in a home invasion scenario).

What I do remember is that they are often disturbing on some level, even if I don’t remember the specifics; I can still feel the fear or strangeness that pervaded the dream.

I’ve mentioned them to the doctor before, but Brian is lobbying for me to tell him again. I figure it won’t do any good if I can’t give him details, but maybe Brian’s right, and just knowing that they’re scary dreams will give him an angle to work with.

21
May
10

Is Talking to a Person With Cancer Really That Hard?

I read an article the other day that was written by a woman who has been through breast cancer, and a recurrence of breast cancer.

The impression I came away with is that there is nothing you can say to a cancer patient that is going to go over well.

For heaven’s sake, don’t talk to them about how they look – if you think they’re looking poorly, don’t let on, because you’re likely to get “Well, of course, I have cancer, so I’m not going to be looking my best”; but if you complement them on how well they’re looking, they’re going to be upset, as if they think you don’t believe they have cancer “Well, thank you, but I feel like crap on the inside”.

Whatever you do, don’t mention either survivors or non-survivors – non-survivors remind them where they might be headed, and survivors remind them that they might not make it.

And who cares about what you’re feeling about them having cancer? Are you devastated to know your friend has cancer? Well, suck it up, because those cancer patients don’t have time to worry about you, there’s only room in there for what they’re feeling.

And don’t bother to send flowers or cards if all you want is acknowledgment of your kindness and generosity – cancer patients can’t make that kind of effort to say thank you for it.

Aargh!

Can you tell that this article rather set me off?

I’m sure that at least some of the author’s experiences warranted the kind of selfish, cruel responses she advocates, but were most people really being stupid as well as well-meaning? Probably not. I myself have run into a couple instances where someone deserved a cut, which I mostly avoided by responding kindly to their intended nastiness; but it was with people I didn’t know well, and at least one was a competing cancer patient who felt I was getting too much attention, and her not enough. I seriously doubt whether the people that this author writes about really were trying for glory by giving her flowers, or karma by telling her that they were so upset by her news that they were having trouble sleeping.

I have experienced the “Pity Eyes” the author refers to, but usually only from people who don’t know me well enough, or aren’t comfortable enough with mortality that they have no idea what to say to someone who’s just announced that they have cancer (for the xth time, even). There are times when those looks make me feel like the “Already Dead Julie”, but usually I handle them the same way that I handle the more confident people who express their shock/sadness/grief that I am back in the cancer saddle; with a smile and a thank you for the heartfelt wishes.

Because even those people who try to make me feel better by talking about how well I’m looking (and currently, other than being very bald and very tired, I *do* look pretty well), or who remark on how tired I look some days, have an unwritten text of “I hope you’re feeling well, and if there is anything I can do to help, just let me know.”

And the people that I have to comfort about me having cancer? They remind me how much I’m loved and cared about – anyone who is getting a hug from me is also giving me a hug.

How sad to live in a world where you perceive everyone in it for what they can get out of it – I know there are people like that in the world, but I guess I’ve made the choice not to surround myself with such people, but with people who are genuine and caring, even if they don’t always know what to say. No doubt the author definitely had some unpleasant experiences, some of which were brought on by jerks; but I suspect at least some of the bad experiences were driven by her own perceptions of what she thought they meant.

Being a cancer patient can be an all-consuming lifestyle, especially when you can’t just go driving somewhere whenever you want. But even if it is more of your life than you want it to be, you’re still human, and it doesn’t remove the basics of etiquette from your list of how to treat people. Is someone being a jerk? Feel free to let them know it. Is someone being awkward in expressing their feelings about you having cancer? Give them a break and take the behind-the-scenes message of “I care, but I don’t know how to act or what to say” to heart. Having cancer doesn’t give you the right to be less than human; or give you the privilege of taking your anger out on some poor unsuspecting sympathizer.

But if you are in it just for the glory, I’m sure there is someone out there who will be glad to let you have a ride on their cancer wagon ;-}

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.

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.




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