Hello CRC loved ones,
I haven't been able to be around much because I have been either being a caregiver to husband with stage IV lymphoma or sleeping (why do I prefer sleeping?
) Despite his early claims to be willing to take lots of Ativan to counteract the massive steroid effect, that promise was abandoned, so I do my best to lay low on those steroid days, because he gets a bit scary. Also, his promise to go "see someone" re: psychotherapeutic support and medication for what is most likely untreated bipolar issues has by the wayside. It's fun, fun, fun around here these days. He has finished the 3rd round of his chemo, which seems to have no bad effects on him at all (it is NOT CRC chemo, that's for sure), other than the steroid effect. Somewhat contrary to our oncologist's wishes he is working three half days a week, which I now think is good in many ways. Use your imagination
. Cancer-wise, I'm just not sure how that is going. He just reported to me from work that he's lost 2 pounds in 2 days (though he eats like a horse) so that is likely cancer-metabolic activity...and his cough is back big time, so who knows? There are no blood markers for lymphoma. He is going to get a new PT/CT 2 weeks after his 4th round, so we'll know then a little more about what is going on.
I had another CEA scare at the beginning of November (8.2) and was to have had it repeated at the beginning of December, but that was when all hell broke loose around here, and I was never able to get around to it---sort of put it out of my mind, because the thought of me having a recurrence the way things were with him was just too much to even think about. Anyway, I finally had it repeated last week and it was 6.1! Yippee and thank God. I suppose I will just always sort of hang around on the high side. I am trying so hard to cut back on smoking, with my goal, of course, to quit, but what a nasty addiction!. A friend of mine sent me an oboe reed to keep in my mouth, which is incredibly helpful...I guess I've cut back on smoking by 25% just keeping it in my mouth and breathing air through it rather than smoke. I'm intensely curious to see what my CEA would be as a non-smoker.
The long-timers on the board will know what a complete life-saver my son Dan has been to me since I was diagnosed...HE was the one who went to every chemo with me, HE was the one who waited for me to get out of the surgeries, HE was the one who recognized the time I was critically dehydrated and insisted an ambulance be called ( as I was semi-conscious in bed), against my husband's wishes, and when I was placed directly in Intensive Care. Basically, he has been an incredibly loving and faithful caregiver, sticking up for me when needed, keeping and eagle eye on everything, encouraging in every way (and as my therapist said, acting as my husband should have
) Well, he is moving to Vermont within the next couple of months. He's wanted to live there since he was a child, his wife's job was able to be transferred up there, and as I have told Dan repeatedly, he was NOT born to take care of me. It is high time that he began to live his own life. I celebrate this move for him, but of course, am anxious about it as well. Just wait until he sees how the disgusting, selfish part of me can be totally buried with the joy I feel about him working toward the life he so richly deserves! There are even teaching jobs available in Vermont (as he hasn't been able to find one here despite more than 2 years of looking!)
So, that's about all from this corner of Pittsburgh. I feel well, except for a feeling of overwhelming fatigue, all the time. A part of me keeps worrying that it's cancer related, as it's that sort of overwhelming fatigue I felt before I was diagnosed, but it appears not to be that, I guess, so I am just trying to take my own advice...day by day, hour by hour...or minute by minute when things are really bad.
Which brings me to the final metaphorical slap in the face. I had told my husband about call-on congress for more than a year, because I had SO wanted to go last year. Last year, I was just a couple of weeks off chemo and it just really wasn't a good idea for me. This year, with the advent of his cancer it looked like it wouldn't be as well, but then I carefully calculated the timing of his chemo, figured he would be two weeks post chemo and would be fine for me to be away for 3 days. I told him again a month ago. I told him again a few weeks ago. I reminded him a week ago, and he threw a complete and total hissy fit. I'll skip all the sordid details. I am a firm believer in choosing battles, and I chose to fight this one, but got nowhere. I will not be able to attend. I have so much to say about it that I can't say anything. Anyone remember the movie "Rain Man" where Dustin Hoffman's character kept a notebook about "serious offenses" that had been committed against him? Well, this one has already gone in my book, and there may be some big surprises around here one of these days. And that, is that.
Love to you all. Keep fighting, but try to find a laugh while you're doing it.