Posts Tagged ‘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.

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.

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.

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.

04
Jun
10

Bad Times at We’reNot High

Not this week which is just finishing, but last week, I had an emotional crisis.

Brought on in part by my homebound state, which in itself is partly brought on by trying to get my pain management right, it also digs out parts of me that were the most pessimistic and cynical aspects of my personality for many years. No matter how long ago or how thoroughly I’ve changed from that alienated, hard-headed, angry, blameful, unhappy person that I was decades ago, there are remnants of her that lay in wait for just such a difficult time, popping up her little Alien head right in the middle of my chest, leaving a bloody mess for me to clean up.

Now being homebound is bad enough, and being whacked out (or not enough whacked out) on pain medication is worse, but add in an insidious little voice that tells me that I’m not good enough for my friends, and why would anyone bother to be in touch with someone who doesn’t bother to be in touch with them, and you’ve got three prime ingredients for emotional crisis.

It’s true that I haven’t been very good at keeping in touch, although it is hard to do when you spend a lot of time sleeping; and even more difficult when you can’t seem to get the pain meds balanced so that you’re awake enough without  being in too much pain. But the fact is that I *know* that the people who love me love me in spite of my poor communication style. Knowing that they have full lives is much more the kind of the thing that the “normal” Julie would think, or that they’re worried about overwhelming me with contact when I’m having enough trouble just getting my meds balanced, or that they’ve been meaning to call and are just no better at it than I am.

Sadly, I have to spend so much time with “Used to be Julie” who still resides in my head just for these kinds of instances, that it doesn’t take much to push me over the edge into depression and self-pity.

So that was the state I was in for most of last week. I basically told Brian that the only things keeping me living were he and the dog and cats, family, and friends – at that point, I told him, I have no purpose in life other than to be here because of them.

I’m not sure which is more pitiful – that you could read it as being that I’m just sticking around because you poor people need me; or that it is so depressing that I could believe living because of the love I have for that group is barely enough to keep me holding on.

Brian, bless him, understands me much better than anyone, and he knew that I needed to talk about it. And talk we did, around me sobbing into his shirt – I think this is the first time I’ve had a serious cry about being told I have terminal cancer. Of course I have something to be depressed about, but there’s no need for me to go creating reasons to be depressed.

One of the steps we decided on is that I need to get out of the house more often. The tricky part with this is a) choosing an activity that isn’t overwhelming or too long for the amount of energy I have (or am likely to have, when planning in advance). This weekend, we implemented this part of the plan by getting out to see a couple movies. You know, terminal cases can make anything seem profound, but does it seem like a bit much that I sobbed through the preview for the remake of The Karate Kid? I used up nearly half my allotment of kleenexes for the whole movie just on that preview alone! I managed to get the dose right to be able to stay awake and mostly comfortable in the movie theater seats; so we decided to try again and went to see Iron Man II on Monday. Again I hit the right dose. We did go out to dinner afterwards to The Old Spaghetti Factory – unfortunately my tastebuds are all whacked out from the chemo, so it was more or less a wasted effort on my part. Brian had leftovers for Tuesday, though. Just getting out helped my mood immensely.

The next biggest step to implement is for me to get over my fear of asking people for help. I’m afraid of being a burden, especially this early on in the whole process. In this particular case, help is synonomous with coming to visit. I’m going to figure out a way to set up a calendar that people can log into and put their name down for visits, but in the mean time, I am going to handle it manually.

I learned from a visit by my friend Sue yesterday that 2 hours is about my top max time – I was definitely ready for a nap by then. I’m having chemo on Tuesdays now for a while, while my Wednesdays have support group. Probably the best time to visit is either Monday afternoon/evening or Thursday afternoon/evening. Mornings are much more difficult for me, since they’re a prime time for sleeping. As long as I know in advance, though, pretty much any day but Friday is OK (Friday evening works, but morning/days don’t really).

The third step is for me to get out to visit people. Wednesdays, as mentioned is for my support group. Leah is putting together a small group for a beer after work next week – we’re keeping the list of names short so that it’s not too overwhelming. Brian is going to drive me there and home.

Hopefully between these three steps (and I really am going to try to make a better effort at keeping in touch, also), my current mood will stay improved as it is, and maybe get even better as I get into the hang of the whole crawling out of my shell thing. It’s doing so much better already that I’ve only cried about three profound things in this post.

(No, not really). . .

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.

24
May
10

Robin – In Search Of: The Cube

Here, for you to watch while I’m off at the chemo “spa day”, is a video starring Robin and Brian demonstrating how Robin searches for his treat-filled cube. Because it was shot in one take, it ends up being a fairly simple search. We really need about 5 cameras, clip-on mics, and some editing software to turn this into a professional-looking video, so please forgive the faults.

Robin searching for his cube




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