I’m Not Dead Yet (I.N.D.Y.)

After being discharged from the hospital on Tuesday, I have been taking Cipro to continue fighting the E. Coli. Things seem to be going okay on that front.

I had an appointment with Dr. Kauh on Thursday. On top of everything else, I was again anemic and needed another couple of units of blood (I got them on Friday).

While I was in the hospital, the docs ordered an MRI to make sure there wasn’t an abscess in my stomach (there wasn’t), but it turns out that my tumor has grown again. It is now 5.1 cm and is encompassing several of the small arteries in the area (further evidence that this tumor is non-operable.

It’s a little depressing that nothing seems to work to slow down or shrink the tumor (though, Dr. Kauh did again emphasize that I am lucky to have a lazy tumor). We may try me on a Phase I clinical trial of a drug that may help. Unfortunately, Phase I trials are all about toxicity levels and less about effectiveness of the drug.

In the meantime, I keep plugging along and fighting the good fight.

Thanks for your support.

Merle

Tags: Cancer News, Main, Treatment | 1 Comment »

“All of you who have recently been discharged from the hospital, take 1 step forward….not so fast Hamburger!!”

Apparently, the folks at Emory Hospital missed me.  I just got a call from one of the doctors there and it seems that there was some bacteria growing in the blood cultures they took on Tuesday when I was originally admitted.  Because there is a bacteria growing in my blood, the doctors wan to re-admit me to the hospital; having a bacteria growing in your blood is not good, it would seem.

My boys have a graduation ceremony for a Coming of Age program they have been doing for the past 9 months at church.  While the doctors would prefer that I go to the hospital earlier rather than later, my plan is to hold off so I can go to the boys graduation celebration and then head to the hospital.

Aren’t you all jealous of me?  All this time I’ll be spending in the hospital?  Some people have all the luck.

More later.

Merle

Tags: Family, Main, Treatment | 2 Comments »

Just a quick update…the docs sent me home last night. YEAH. They did not find any infection, but just to be sure, they sent me home with Ciprofloxin, a general antibiotic just in case they missed something.

I have to say that I did not miss being awakened in the so some nurse could take my vitals or collect some blood. MaryBeth offered to do it form me (we do have an electronic blood pressure cuff). As much as I appreciate her special offer, I told MaryBeth I really did not need her to do so (actually, I used several choice expletives that I cannot repeat in mixed company).

More later.

Merle

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I’ve written before that I have been cold more often than not, largely due to my loss of weight.  I’ve also talked about going into work as much as possible.  Well, this past Tuesday, I went into work but only made it half a day before I was feeling too miserable to useful (so I went home).  Around 4p, I started shivering (out of no where).  I was so cold that I went upstairs, got in bed, under the covers, and tried to warm up.  I was less than successful.

I went down for dinner and continued to shake more and more.  Finally, MaryBeth went and took my temperature twice (99.7 and 100.8).  Our oncologist said if my temperature ever got above 100 to go to the emergency room.  I thought MB was being silly, but when I got to the ER, my temp had spiked to 105.   Apparently, this is not good because I was taken back to a room immediately, they put cold compesses on me, and put in 2 IV lines.  Three hours after entering the ER, I was in a hospital room and have been here since.

The doctors are looking for and infection, but have not been able to find anything yet.  So I sit here at Emory, get broad spectrum antibiotics every two hours.  Meanwhile, I have been catching up on my sleep. 

My temp is hovering right around 100 at the moment, but there is talk that I may be able to go home tomorrow (we’ll see).  Just wanted to bring you all up to date.  You know, when I was on an all liquid diet, my nausea was almost non-existent.  Now that I’m back on solid foods, the nausea is back; talk about a trade off.

That’s all for now.  More later, perhaps.

Merle

Tags: Cancer News, Main, Treatment, Work | 3 Comments »

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

Tags: Cancer News, Main, Treatment | 6 Comments »

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

Tags: Family, Main, Merle | 4 Comments »

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

Tags: Main, Theology/Philosophy, Treatment | 7 Comments »

Last Friday I went in to try and get another transfusion of 2 units of blood.  Well the nurses there doped me up with all kinds of meds to avoid allergic reactions which just knocked me out; BUT I was able to get the 2 units.  They helped some, but I think I needed all 4 units because I still have trouble taking deep breathes these days (something to talk with the docs about).

I’m trying something adventurous this week.  I am in Montreal to meet with a grantee and do some analysis.  The adventurous part is all the travel that was involved.  Oy, I could remember when a simple plane trip was just a blip on my radar screen.  Yesterday, by the time we got to the hotel, I was so tired, I ended up napping for an hour.  Good thing I’m only here until Friday.  I miss the family.

The nausea seems to be under control at the moment and despite a less than restful nights sleep, I’m ready to get to work.  The only challenge is that my grantee is in another hotel and we are having some challenges connecting to make a plan for the work we want to do.

So I apologize for not updating sooner.  In general things are going well.  I am still suffering from nausea pretty regularly, but the meds that I have help to battle that.

Just as an FYI, it is likely I will not update the blog next week as I will be spending time with the family while the kids are on spring break.  Hopefully there will not be anything to tell you about, anyhow.  My next appointment with the docs is April 12th, so hopefully I’ll have something to report after that meeting.

Until next time.

Merle

Tags: Main, Treatment | 2 Comments »

So per my last post, MaryBeth and I went to the hospital to get me transfused. Unfortunately, after about 30 minutes I developed a case of the chills, indicating that my immune system was trying to fight off the new blood. What we don’t know if the problem with my and my system or something in the blood. The hospital is checking out the blood and hopefully we’ll be able to get it to work next week.

Merle

Tags: Main, Treatment | 7 Comments »

I told everyone that I was going to have a doctor’s appointment on Tuesday of this week, but my oncologist was going to be out of town and he wanted to make sure we had a chance to ask him questions if we had them so he rescheduled my appointment to today.  Actually, the week started out with an Email from Dr. Kauh asking to have a phone call with MaryBeth and me.  Did I get worried that this was the first time he had called us, of course not.  Seriously, I was pretty nervous about what he had to say.

The results of my scans indicated that the tumor grew instead of shrunk as a function of my chemo.  It is now 4.1 cm big and as best as we can tell still growing.  My labs revealed another issue, however; I am anemic.  I was going to start a new chemo regimen today, but instead I will be getting 2 units of red blood cell tomorrow (Friday).  And then another 2 units next Wednesday.  But they don’t want to start a new chemo until my red blood cell count is higher.

On the upside, my weight was up this week.  I was 181 today, so there is that.  At any rate, I wanted to let you know what I learned at the doctor’s office today.  More as it becomes available.

Merle

Tags: Cancer News, Main, Treatment | 3 Comments »