Down day

Yesterday was chemo day for me.  I got to the hospital at 8:45a and was there for 4-5 hours.  The joy is that the doctors want to infuse 2 units of blood to help get my hemoglobin up, so I am back at the hospital today to get that done.  And, oh by the way, I’m having swelling of my legs and feet, so make sure to keep them elevated.

Let’s just say that my mood is not as chipper as I have been in the past.  I was terribly nauseated yesterday (got sick even) and I’m feeling “off” today — not so much nausea, but just not feeling right.  Intellectually, I understand that I am likely to feel off the day of and for a couple of days after getting my chemo.  That knowledge, unfortunately, does not change the reality that right now I’m feeling pretty down.  My protien is down, so I need to eat more and take more of my enzymes.  My hemoglobin is down, so I’m going in for an infusion of 2 more units of blood.  My bloodcounts are low (but not low enough, I guess, since the doc was not terribly concerned about them yesterday).  What can I say, I’m a mess.

Part of this may simply be not getting enough sleep.  I had trouble sleeping yesterday because of feeling nauseous (I felt better once I did get sick).  Part of this may be a vivid reminder that the treatments I am going through are palliative; that really what we are trying to do is slowing the tumor growth down.  Perhaps it is simply not knowing the future.  I have been wanting to ask the doctors to give me some kind of prognosis and they have been reluctant to do so; perhaps we’ll have a better understanding of my disease progression after the next set of scans.

Now before you all get worried; I’m not giving up.  I’m not throwing in the towel.  It’s just hard to be upbeat and happy when you feel yucky.  I have to remind myself that even though the tumor is back, it was 3 years ago this past Friday that I was diagnosed.  Median survival rate from day of diagnosis is something like 15 months, so I am very much beating the odds.  When we do the next set of scans, we may find that the tumor has shrunk and there continues to be no metastasis.  It may be that this dark mood I am in at the moment is all for naught.  We’ll know in about a month.

For the time being, though, I continue to appreciate all the love and caring people have shown me and my family over the years.  And, despite how I’m currently feeling, I can say, withouth a shadow of a doubt, that I am (still) not dead yet.

Merle

Great weekend

Sorry for not having written much over the past couple of weeks, but I have been a busy puppy.  The trip to Montreal was okay;  I was supposed to go there with my supervisor to meet with one of our grantees to discuss analyses and paper writing (a lot of what I do in my job).  Unfortunately, my supervisor got sick and couldn’t go and our grantee was not feelin very well, either (though we did meet for about 3 hours).  It wasn’t a total loss, but I was wiped out after all the travel.

THe following week, my family and I went on a trip during the kids spring break.  At the last minute, MaryBeth and I decided to take a cruise and we found one that sailed from Port Canaveral to two islands and back.  The boys and I sn0rkeled together for a couple of hours (before I pooped out).  MaryBeth and my daughter went shopping and my daughter found a beautiful purple dress that I believe she has worn every day since getting it (except for the times MaryBeth has been able to pry the dress off her to get it into the wash). 

On the ship, my daughter played in a program with other kids her age.  My younger son hung out in the teen lounge.  My older son stayed in the stateroom watching TV and playing his gameboy.  MaryBeth spent time in the casino.  And I got the opportunity to layout on deck and people watch and read my book.  We spent the most time together at meals, though, and everyone in our party took advantage of the “all you can eat” mantra onboard (even I gained 5 lbs on the trip, but I”m sure my weight will be down next week at my doctor’s appointment).  My older son, in particular, was in heaven when we went to the buffet and he could make as many double hamburgers as he wanted.  His consumption of these burgers are the stuff legends are made of. (I think he could definitely be a guest contestant on Man v. Food).

After getting off the ship, we visited with MB’s grandmother, my step-mother, and my best friend from college; all great visits.  We only had a couple of days at home before family started coming in.  We decided to host a seder at our house and my mother, brother and his family were able to join us.  It was great having them around.  My cousin, Martin, flew down for the day on Friday and it was just great to see him.  I wish I had half of his sense of humor and wit.  My brother and his family left on Sunday, but then my sister and one of her daughters came down to visit with us (and do some traveling around coastal Georgia).  It was great fun just sitting around and chatting.  My sister left on Tuesday and my Mom left on Wednesday.

As you can see the past couple of weeks have been a whirlwind of excitement.  I think the cruise helped to make some fun family moments and I felt incredibly loved as my family came down to celebrate with me.  As always, I continue to tire easily.  I’m still having bouts of nausea and diarrhea, and I’m starting to get more aches and pains.  But for all intents and purposes I feel fine.  If I’m nauseous, not so much, but I think that is simply becoming part of my new “normal.”  I have cancer and as a result I will be nauseous from time to time.

I’m in a good place right now.  I’m not obsessing about my cancer, and I am looking for ways to have our family do things together.  Yes, sometimes I am in a darker place, but for now…for today…I’m good (and that’s a good thing).

As always thank you for all your love and caring.  They mean a great deal to me.

Merle

Lightening up

All through my earlier disease, I adopted a saying that showed me figuratively thumbing my nose at my pancreatic cancer.  I have t-shirts that say it. I have rubber bracelets that say it.   I’m not dead yet.

As I alluded to in the early stages of my disease, it was easy to flippant because and negative effects were down the road, far from being seen.  Ever since the tumor has come back, I have been reluctant to use my motto; it just didn’t seem right; I didn’t feel comfortable saying it.

Let’s be honest, my treatments since September have been palliative — they have focused on trying to slow tumor growth while maintaining my quality of life.  Well, we all know that the first back for chemo did just the opposite, so we are getting ready to try another regimen.

Funny thing is, I am starting to feel like I can say, “I’m Not Dead Yet.” again  It is true, I am closer to dying now than I was last year.  My tumor is almost as big as it was when I had the surgery, but today, right now, my spirits are high enough that the motto doesn’t seem so threatening.  I wanted to share this revelation with those who have been supporting me for years.  I’m in a good mood and I can truly say that I am not dead yet.

Cheers,

Merle