Posts Tagged ‘cancer

19
Aug
10

who’s telling whom what?

We went in to see Dr. Medici today expecting to tell him that I was quitting chemo; instead, he surprised us by saying that another chemo would probably do more harm than good. I’d figured on having to convince him, and he thought he’d have to convince me.  So, no chemo for me.

Also I had fluid build-up in my abdomen again (ascites, pronounced ah-sigh-tees) & had 3.5 litres drawn off (when I was in the hospital, they only got 2.1 litres).

All for now,

17
Aug
10

how are *you* doing?

I’ve been out of touch for so long, and wondering how my friends are doing. E-mail (home, not work) is best, or a comment on this blog.

We see the oncologist on Thursday (way too early) to decide when to resume chemo. I’ll let you know what we decide.

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.

14
Aug
10

not much new

still weak and exhausted, two-finger typing = no new blog post.

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.

08
Jul
10

I Picked up the Phone.

It. . . it was beautiful, man; it really took me back to about a month ago, which was like the last time I picked up the phone. So groovy!

And there was a person on the end of it; but not just any person, a person who hadn’t given up on me.

No guarantees about picking up the phone in the future, but I have to say that the anti-depressant appears to be doing its job.

People have been noticing the change in my voice and tone; I laughed at one of Brian’s jokes for the first time in weeks (and no, it wasn’t because they were so bad before that. . .); I got up and met him at the garage door today, which freaked out both him and the dog, it’d been so long.

Thank you to everyone who has persisted, e-mailed, visited, loved.

Especially Brian.

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

Lunch With the Ladies

Thursday, Monica and Linda and Heather came over to have lunch with me.

Monica hit the kitchen like a storm, preheating quiche, slicing bread, prepping something or other; I set the table, and we were ready to eat.

Sausauge quiche, fresh-from-the-garden-asparagus salad, several types of fruit, bread, and who knows what else – it was all delicious!

We spent most of the time talking about work past; changes that are going on there now, and just laughing and having fun.!

Thanks for the food, fun, pep talk, and hugs – I was in need of them all. I agree, we should do it again

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.

08
Jun
10

Husbands and Friends

I was still wallowing in my misery come the weekend, because one week goes just like another.

I did have some relief – my friend Sue came to visit on Thursday, and it was so good to see her. I met her in my first support group – you remember, the one where I actually was helping support, not just being supported. She was having her surgery on the Tuesday after my Friday surgery and was very worried about it. I got dressed on that Tuesday, and had Brian drive me over there while she was in pre-op so I could show her my dressings, and how quickly I was up and around. She told me once that my doing that helped her get through her surgery easier emotionally.

Her coming to visit me when I was so down was sort of the equivalent for me.

A couple friends who had planned to come by on Friday had to cancel, but we’ve rescheduled for later – as it turned out, Friday was a very physically down day for me, and I really needed to sleep, so it worked out for both of us.

By Saturday I was back into full tailspin mode again, just seeming to be unable to shake all the nasty fatigue and pain – I can lessen the pain using the pain killers, but that ups the fatigue and inability to focus, and what is a good balance one day isn’t the same the next.

Brian is becoming hyperaware of my moods (for me, sometimes it seems there’s only one, which is down; but he sees variations). He said “I’m going to call Cathy and see if she can come for a visit on Monday.” I knew then he was worried, because he was calling in the big guns.

He tried to get me to go see Prince of Persia both Saturday and Sunday, but I just physically couldn’t come up with the energy.

Monday morning, I was taking it easy expecting Cathy’s arrival around noon or so, but emotionally I was worked up to a peak again. I finally called the doctor’s office to talk to the triage nurse, and tell her I couldn’t go on this way. I mean, I had 4 months of taxol/avastin treatment, and even with the pneumonia, I never felt this bad. Heather told me that there are lots of things we can do in terms of taking breaks from chemo, from lowering the dose to changing drugs, but that this level of toxicity isn’t normal, and nobody should be trying to deal with it. As I was talking to her I realized that I’d always just answered questions about what side-effects I was having, but never really told them, except for the pain, how hard they were to deal with. Also, she said abraxane is one of the hardest drugs in the chemo regimen – I just figured that since it was similar to taxol that I must just be getting wimpier than I was when I had taxol.

Heather told me that she would make sure the doctor knew we’d had this conversation, but that I had to make sure that I talked to him about it when I saw him on next Tuesday. After I hung up, I started crying and just couldn’t stop.

By the time Cathy got to the house, I was down to just sniffles, but as soon as she got a look at me, she asked “Are you OK?”

“Oh, my nose is just runny. . . . . . and I’ve been crying.”

She just opened her arms and held me until I quit crying. Again.

Everything else we talked about was secondary to that and the goodbye hug she gave me. Sometimes, touch is the only healer.

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

05
Jun
10

Will I Bless it Then?

I’ve been spending a lot of time thinking about Oregon’s assisted suicide law, and I have discussed it with Brian, also. We are both in agreement that this is a good law, but one to which we’d hoped never to need access.

But then life takes some funny turns (ha, ha, I’m so amused), and here I sit, one step closer to eligibility. I’ve been through some difficult times in my life, but never resorted to even attempt suicide, because for me solving an unhappy relationship or letting go of a piece of my past was not worth losing the rest of my life over.

I have to say, though, that although I’m not compelled right this minute, I forsee a time in the future when I will take full advantage of the Assisted Suicide law. Months of pain and suffering, of being unable to use my head or my hands in the way they’re intended; unable to get out of the house without someone there to give me a ride; dependent upon handholds and stair steps to get into the bathtub because I can’t step that high any more; being unable to read for any length of time; not being able to visit with my family because they’re too far away, and can’t afford to come visit me; being unable to play with the dog or even take him for a walk.

These are all just personal limitations, and not nearly all of them. I’m much more concerned that Brian will exhaust himself taking care of me; that the hope of one regimen of chemotherapy working for a few months will be replaced by the despair of finding that the other options out there don’t work as well; that Brian will end up having to declare bankruptcy due to all the medical bills in store; that all he’ll have to remember me by is a wasted body and brain and screwed finances.

So while I’m still of sound mind and body, but before it becomes the only option I can see, I say now that it is very likely in the future, when treatments are no longer working, but before massive deterioration in my condition sets in, I will look into the option of the Oregon Assisted Suicide law, and will probably take advantage of it. Brian has told me that he supports me in this, even though both of us would prefer to have a miracle cure discovered before I reach the point of making that choice.

Blessings on the Oregon voters for understanding personal choice, and for understanding death with dignity. I never want to be there, but given the likelihood that I will be, thank you for making it possible for me.




Post archive

December 2020
S M T W T F S
 12345
6789101112
13141516171819
20212223242526
2728293031  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 33 other followers