Another sideshow.....

      Just when I thought I had turned the corner on the cellulitis in my legs, something new rears its ugly head — an allergic reaction to Cephalexin antibiotic in the form of an unpleasant itchy near-full-body rash!!! Benedryl tabs are helping control the itch, but it is not pretty. This is my first every allergic reaction to any medication. I've always been able to say "none" to allergies to medications. Now I have a known allergy to a medicine.
      I have come to call these annoying ailments "sideshows". Cancer is the featured malady under the big tent, but I have collected a large assortment of sideshows:

• pancreatitis
• diarrhea
• headaches
• nausea
• cellulitis
• deep vein thrombosis
• itchy rash

Enough already!

I'm lucky I didn't have a heart attack to add to the list when I saw the cost of a 30-day supply of this blood thinner med. Holy Cow! The $ sign is missing, but you can see it's costing me only $1/day and insurance is picking up the rest. It's my contribution to hog farmers, as this generic form of Lovenox is "derived from porcine intestinal mucosa in Water for injection". I have to inject it into my "love handles" once a day.
Another pork product I am buying is Creon which is made from pork pancreases. I take one or two whenever I eat because it contains the digestive enzymes I now lack because my pancreas is sick. Thank you hog farmers everywhere.

On the other hand.....this is the drip antibiotic that was used to stop the cellulitis while I was in the hospital. While visiting me, Pastor Barry Kreider noted it appears to have been on sale for $1.28 at Ollies (sorry, it's a PA inside joke). 

      

On using the language of war ...

     Born and raised Mennonite, and attending Freeman Academy (a Mennonite high school) and Freeman Junior College (RIP), I learned and still espouse the fundamental peace and non-violence tenets of the anabaptist faith. I was reminded this week of the prevalence of war language in cancer blogs.
     So I find it fascinating how easily - maybe pleasurably? - I hear and use words of war to write about my battle with pancreatic cancer. Dealing with the real is to "fight" this Emperor of all Maladies (more on this fine book in another post).
     I returned from the hospital late Friday afternoon with much-reduced redness and swelling. While there, they brought out the big guns (antibiotics in the penicillin family) to fight and kill the infection in my legs. While there I learned I have another problem: deep vein thrombosis behind my right knee. But it was my left leg that was most infected and swollen. Both legs needed to be attacked with a platoon of antibiotics.
     When I was in the hospital last month with pancreatitis they brought out the heavy artillery to kill the pain.
     I take chemo to kill the enemy tumor. And I don't care if the chemo molecules urinate on the corpses of the slain cancer cells! In fact, I would take delight in that. My kidneys are still good.
     When radiation therapy radio beams are properly aimed, they hit the target, they bombard the adenocarcinoma with radiation to control and kill the cancer cells.
     You get the idea. While this language may imply that I have inner, cooped up anger and rage, in reality I am mentally and spiritually at peace with my situation. It's the language in common use, so I use it.
     Like many upstanding Mennonite men (maybe that doesn't include me, poor intro there...), I have pent up emotions about guns and violence. I think guns are cool and wish I had a collection of them to admire, handle and shoot. They really are fun to shoot. I think all Mennonites - men and women - should shoot guns frequently to release all those suppressed inner feelings of violence. I think church youth groups should have actual skeet and target competitions and make pledges to not play any video games.
     However, I also confess guilty pleasure in much theatre and film which has "meaningful" violence. I abhor the gratuitous violence of many films, tv shows and video games.
    Oops, I got waaaayyyy off track here. I am at home with Diarrhea while Barb is out leading a workshop. Don't tell her I am cheating on her.
     Thanks, everyone, for rooting for me. I know it helps.
     I leave you with this poem, extracted from Emperor of all Maladies:


               Physicians of the Utmost Fame
               Were called at once; but when they came
               They answered, as they took their Fees,
               "There is no Cure for this Disease."
                                                      —Hilaire Belloe

Back into the hospital

My legs are very swollen and infected so Dr Yee said I need an IV antibiotic. It looks like 2-3 Days in the Hershey horsepistol for me. I am doing this on an iPhone and my thumbs are WAY TOo BIG!! I have a long ways to go to thumb type like I've seen young folks do. Good night.

Radiation therapy begins

     Today I had the first of 28 daily M-F radiation therapy sessions at Hershey Medical Center Cancer Institute. I am just as nervous about this "cure" as I am about chemo. As I lay in the machine (fortunately for just a short 10 minutes or less - I'll time it tomorrow) I couldn't help but think of awful, terrible, unspeakable damage to my good guts! Somehow radiation is harder for me to comprehend than chemo. Chemo is a toxic chemical infused into the body to kill fast-growing cells. That's fairly plausible. But radiation is very different. First, it's invisible. So, for me, it's mysterious, hard to fathom and yet so very powerful. How does the beam "arrive" at my pancreas tucked under my (so far healthy) liver?? Does the beam have a target distance after which it no longer kills good tissue? In other words it hits the pancreas and then what? does it pass through it to the liver or spine or lungs??? I will have another visit with my radiation oncologist on Wednesday to ask these questions. Secondly, radiation can CAUSE cancer. How comforting is that?? As you may surmise, there was some angst today.
     Fortunately, these treatments don't take long. They will ask me the same three questions every day: "Is this a picture of you?" (they took a headshot of me during the calibration phase), "What is your date of birth?", and "What are you here for?" (Barb said I should answer the last questions with "a chocolate milk shake") My friend Tom Burnett gave me a ride today. He picked me up at 2 pm. Treatment started at 3:10, and by 3:30 we were driving back to Akron. The machine used for my cancer is Varian's Trilogy. It's very high tech and I am confident the technicians are skilled in this arena and are not related or in any other way like a certain cruise ship captain that was recently in the news!
     I am still totally blown away by the response to the CareCalendar we launched on the internet last Thursday asking people to sign up to give me rides. All 23 or so trips were filled with drivers by Sunday!!!! That just gives me goosebumps. As my pastor, Barry Kreider, said in an email to me: "You are loved.".  Indeed. I am loved.
     Cellulitis update: My lower legs are still red and hot; but the new antibiotic seems to be slowly gaining on the infection. I am to take the pills thru Friday when I have another visit with the amazing Dr. Yee. Otherwise, I am doing very well, actually. I have occasional nausea, headaches and poop problems. I am also more sleepy. But I've been sleeping well at night compared to the first few weeks right after the news that I have pancreatic cancer.

Another trip to the ER . . .

Each week seems to bring some new adventure! Pick a cliché: "riding on a merry-go-round" or "snowball effect"  — my cancer event brings ever-circling symptoms and keeps building on itself. My increasingly frequent trips to the drug store and fast-growing pill inventory are proof of that!

Last night (Wednesday) Barb and I drove to the ER in Hershey after agreeing that a self-diagnosed case of  Celluliltis on both my shins was not improving after three days of taking an oral antibiotic, amoxycillin. After taking a long detour (due to an accident on 283) taking us on winding roads over the river and through the woods we arrived at about 10:30 pm and were admitted and treated very promptly; thanks mostly to being "in the system" there. They drew blood including blood to culture to finger the guilty bacteria. The results take about two days we are told. The blood test showed my neutrophil (white cell) count went up from 700 last week to 2480. This is good news. While there I was given an IV of Clindamycin and a prescription for the same in oral form and sent home. I am so very happy to be home.
Today I decided to stay home an keep the leg elevated at least half the time. It feels better already.


This all started when I noticed redness, swelling, and pain in my legs when getting out of bed on Sunday. By Monday the affected area was larger and hot so I called my doctors nurse in Hershey who, based on my own diagnosis, prescribed the amoxicillin. Barb and I are familiar with Cellulitis from when she had it back in Freeman during her times taking chemo and having surgeries. Our wonderful neighbor and RN Rita Graber stressed to her to get treatment right away, as it can be a very serious condition if not treated early.


Bottom line: a compromised immune system is bad news. My advice: Quoting fungi expert and writer Nicholas Money, who was a guest on Fresh Air yesterday, "you should worship your immune system". 

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Chemo #2/9 and I'm low on platelets and neutrophils

    Last Friday I had my second chemo. So far side effects have been minimal. Most annoying are headaches which seem worst during the 1-3 days following. Tylenol helps. Another side effect I recently noticed is dry, sensitive lining of the mouth. I rather not have mouth sores (usually I preferred a medium bristle toothbrush, but I now use soft). Chemo targets and kills fast-splitting cells, but it can't discern between cancer cells and the other cells that divide rapidly: blood cells, hair, mouth/throat lining, etc. I haven't had nausea, but some other flu-like symptoms. Overall, I won't/don't complain too much, as so far the side effects are less severe than I had expected.
    Maybe it's because a low platelet count lowered the first chemo to 75% of the planned dosage. That count didn't change, but now the neutrophil count is very low so my second chemo was 50% of the planned dosage. Neutrophils are young white blood cells. These are the "honey badgers" that attack infection. These critters are amazing. Somehow they can detect a bacteria or fungi invasion and in "flash mob" fashion travel and gather at the infection site to kill. They are the predominant cells in pus. They have a life span of only 5-6 days.
    It's obvious that the low neutrophil count is compromising my immune system. At work I am now using disinfection wipes on the computer keyboard and mouse and am washing my hands frequently. This Friday it's back up to Hershey to have the blood checked and hopefully have an infusion (it is ironic to say I "hope" to have chemo, but you know what I mean). I am also going to have a "test" radiation treatment. Actual treatment will start next Mon., Jan. 23, and last for 5-1/2 weeks. You have all been sooooooo kind to Barb and me. We are blessed. Viele dank!
    
   

Let the battle begin

A short posting on today's events:
    We arrived home in Akron late last night (after 11 pm) from our wonderful trip to Seattle (more on that in a later post) and hit the ground running with FIVE different appointments up at Hershey. It was tough going from a week of enjoying the moment in Seattle to a long day of dealing with cancer crap.
    It included signing two lengthy consent forms (radio and chemo therapy) which list all the horrible possible outcomes. Silly me, actually reading these forms. I should have used my Internet iTunes and online banking agreements approach and just signed the damn things. Online, I usually just click on the "agree" box without reading all the "fine print". (As I am sure you all do.)
    The first procedure I had this morning was radiation mapping. I laid in a moving platform that went through a CTscan-like "donut" with some laser-type beams on my front side to mark my position for radiation therapy which will start Jan. 23 and continue for 5-1/2 weeks. They tattooed me in three places to keep me in line. From this mapping info the radiology team will develop a treatment "program" that will allow the pancreas to receive the most radiation while hopefully limiting any radiation to my good tissue and organs. The radiotherapy team will also factor my breathing, and how it moves my organs, into the treatment. The music on the radio in the room had annoying heavy beat pop music which did nothing to calm me down. I kicked myself for not asking them to turn it off or switch to Yanni or something like that (gag)
    Next stop was for some blood tests ordered in advance of starting chemotherapy - liver function, cancer markers, etc.
    My third stop was to have another CTscan to provide a benchmark to track my chem/radio therapy progress.  My previous CTscan was seven weeks ago. I was curious about any change in the mass. I was heartened by a phone call from Dr. Yee this evening that there was no change in its size or scope!!! I call that good news. Thankfully, this time I didn't have to drink 60 oz of bad tasting water with contrast chemicals within a one hour period.
    The fourth appt was with Dr. Yee. He went over the treatment plan and answered Barb's and my questions. It was here that I learned that my platelet count was quite low - 100,000. He said it was also low at my last blood test. We are stumped by this and don't have an explanation. He said it is not too low to start chemo, but borderline, and will be watched closely as the chemo will also kill healthy blood cells, including red, white and platelets. If the platelet count goes below 50,000 chemo would be halted.
    The last stop was the one I least wanted ... to have my first infusion of gemcitabine (generic), marketed as Gemzar by Eli Lilly. I am frankly fearful of this stuff. I saw how chemo affected Barb and believe me, it takes some extra "positive thinking" to face chemo. This is scheduled to happen every Friday for the next nine weeks. It went OK ... I guess. It doesn't hurt. I felt fine after having it. But I was told the nadir of treatment is 10-14 days after the infusion. The most common side effects are nausea and vomiting. What fun! They gave me anti-nausea pills and an RX for some to keep nausea in check. Earlier this evening I had a bad case of diarrhea and a nasty headache. Whether this is chemo caused or just "jet lag" I don't know.
    Last night after midnight and today I opened the many cards and emails you wonderful people had sent me, which arrived while gone, and I just got all verklempt and cried. Such touching, kind things you have written and said. Thank you for helping me deal with the real.