Just Beyond That Rise: July 2008

Tuesday, July 29, 2008

BACK TO JAIL

Well, I have once again returned from incarcerating Marky back to the hospital. He spiked a fever of 102 and off we went. We knew the drill and it was pretty much the same as exactly 1 month ago when we were in. His white blood cells were at 0.7 so they immediately reserved us a room. We hope this stay won't be as long as the last (5 days). He is on the hard core IV antibiotics and is labeled neutropenic. Call me crazy, call me neutropenic, just don't call me late for happy hour. Queer.

One more chemo treatment a week from tomorrow if it doesn't get pushed back. Keep the prayers comin. No, really, keep em comin.

love,
jen

Tuesday, July 22, 2008

Source of Strength!

Hey guys,

Keep on leaning on each other for your source of strength! Together you are a force to be reckoned with...don't ever forget that.

I love you,

Ali

Wednesday, July 16, 2008

FIVE COMPLETE!

We are in the home stretch. Five chemo cycles complete and one more in three weeks. We just got home and I just set Marky Mark up with the king size bed and a king size Reeses blizzard. After talking with the oncologist today, we learn the tumors have indeed decreased in size by about 70%. After the final cycle on aug. 8th, they will do another CT scan. We are not really sure what we want to see then. If there is absolutely NO change, that could be a good thing. Meaning, the cancer was gone on the last scan and only dead cells or scar tissue remain. If it continues shrinking, that is good but means it is not completely gone. We hope these last two cycles kills the rest of the cancer cells. Basically, he told us the next 5 years will be uncertain because they will not call you cured until the 5 year mark. They will continue to do regular CT scans every few months and we will breath a sigh of relief after each one comes back unchanged. We continue to be optimistic and full of hope. The cumulative effects of chemo are quite harsh and Mark is a survivor. His glass remains half full. The kids continue to thrive and will head back to school on aug. 11th. I had a great visit with my sister Ali last weekend. She came to supply an arsenal of laughs and cosmos. I head to Boston at the end of the month for her husband's 40th bday celebration. Girl's weekend looks to be on in November in Des Moines. Our families continue to be a source of strength for us. Thank you all for your love and prayers.

Jen

Tuesday, July 15, 2008

Dear Marky and Jennie,

Thank you soooo much for such a wonderful, relaxing, fun-filled weekend to Indy. I can't tell you how great it was to see ALL of you....even Draky! "Look, I'm a dog person"! I'll be thinking of you Mark during your consult this week. I know all will be as it should be. The kids loved the notes you sent them...thank you! Lots of love to you all and don't forget to ask the all-important question Jennie...."Does my fat a-- make my a-- look fat"?

Love you,

Ali

Sunday, July 6, 2008

On Melting and Speed Bumps

We got Great News and other news this week. I posted a few details in my column to the right. Independence Day weekend- happy 232nd!

Wednesday, July 2, 2008

still in the hospital

well, now they want to keep him until saturday. He is still running a 101 fever and the antibiotics should kick in tomorrow. He is hot one minute and has chills the next. They are going to push back the 5th chemo treatment one week because his white blood cell count is just too low.(0.5) They did do a CT scan and we look forward to the results tomorrow. We ask for your prayers to include complete annihilation of the tumors, and for Mark's heart to remain healthy from one of the chemo drugs, which can do damage to the heart muscle.

I am off to bed and will do this all again tomorrow.

Jen

visiting the hospital

Well, i am home after 4 hours in the ER and hospital. Mark spiked a high fever and the protocol is IV antibiotics. We don't know what is causing the infection but hope to figure it out in the next day or two. He will probably spend 2 days there so they can monitor and give him the hard core IV antibiotics. I am going to catch some ZZzz's and head back to the hospital in the morning. Livie has an ingrown toenail that is on fire and Andy is well, Andy. Keep good thoughts comin our way and say a prayer for the fever and infection to go buh bye.
love,
jen

My Recovery Progress

My Recovery Progress
8/24/08 Cycle 6, Day 19 I started and completed two Chicago Marathons in '00 and '01. It's a cliche, but I found the "marathon" part of the race to begin at mile marker 20. The last 6.2 miles were the most challenging- physically and mentally. The training gets you to 20-21 miles but you're on your own race day. Finishing, and pushing through the body's urge to stop, comes down to finding and using all the mental tricks and beliefs you created in training.For me, chemo cycles 5 & 6 have been analogous to the last 10k of the marathon. Plenty of physical and emotional challenges overcome with an unwavering belief that I would finish- and win! Today I'm excited to feel as though I've just passed mile marker 26. Tw0-tenths to go and the Finish banner is in sight. Next Friday 8/29, I'll have a post-chemo CT scan. We'll review the results with my oncologist on Wed 9/3. We're expecting to see further reduction or elimination of the remaining tumor- either image is enough to declare qualified victory. I'm looking to that appointment as though running under the Finish Line banner.My support network has made the whole experience winnable. Family, friends, prayer, doctors and nurses have all kept me running. So far I've experienced no life-changing epiphany or "what's it all about" insights. I've read where that happens to some cancer patients. But I do have a new appreciation for care-givers and a wider tolerance for people and belief systems different from my own. I've had the opportunity to take a step back and see things from a more distant perspective. Perhaps more importantly, I've had to relinquish control many times and depend on others for my well being.One more thing that occurred to me; I can now answer most of the questions we had about what treatment would be like. Every answer was always, "it depends on your body's response." We're looking forward to receiving good news on the 3rd. In the meantime, my strength and energy levels are slowing returning-glorious! Enjoying sustained energy is something I'll never take for granted! m7/6/08

Cycle 4, Day 19Remmission! Scans taken Thursday show a dramatic reduction in the size of my tumors- about 1/2 the size shown in March pictures. Specifically, the mass around my medial stinum (throat) now measures approximately 2.4 x 2.2cm vs. 5.7 x 3.6cm in March. The larger of the two masses, centered in my abdomen just above (and partly envloping) my left kidney has melted to approximately 5 x9cm, from 11x15cm in March. The better news with this one is that the tumor has retracted away from the kidney.This is a great report and it reaffirms my confidence and strategy. We have some obvious questions for my oncologist, such as whether the shrinkage is proportional the number of chemo cycles, do the tumors continue to die beyond my last cycle, etc. We'll get answers to these questions and learn more when we meet the Dr. next week for Cycle 5.As Jen describes in her posts, I developed a fever last week during the low point in my cycle. My white cell count was zero, making me vulnerable to infection. As we suspected, the source of the infection, and reason behind last week's hospital tour, was/is a significant internal tissue tear that developed after my first biopsy surgery. Once chemo started, the tear was never able to fully repair itself.To avoid a repeat of last week's distraction, we've decided to postpone Cycle 5 by one week so that a temporary repair can be made to the suspected area. We'll get that done Thursday with the help of a trusted proctologist referral. Thursday's outpatient distraction should set me up for a strong finish through 5, 6 and beyond.Last week was a trying one, initially full of renewed worry and speculation. In the end, though, we have a revised strategy that will put me in a stronger position to finish and recover. The train track image in the next column comes closest to illustrating my thoughts about last week.More to come. m

6/19/08 Cycle 4, Day 2FOUR down, two to go. 67% complete. On 7/7, I'll have a CT scan taken. We'll review the results two days later on the 9th, during my next scheduled treatment date (cycle 5). The pictures will confirm whether our approach has been correct.My oncologist and I both expect to see a marked reduction in the size of the tumors. My expectations are measured but very high. He's done his part with medicine and I've done mine, with the help of so many.The three weeks comprising cycle 3 were the best so far. Among many factors, I attribute the success of cycle 3 to confidence about what to expect, resting my body before it demands, better sleep at night, new holistic approaches to my mental health, fly tying, interesting reading, renewed friendships, deepening family appreciation, and a general calmness and optimism about what's ahead.Above all, my success toward recovery is all about Jenifer, Andy, Livie, my folks, Jen's parents, our sisters' families, and our extended family and friends who have embraced me throughout. It's clear from my days at the cancer center that my situation is not common. From my perspective, most patients lack a look of determination or optimism. Most don't have a companion during their entire treatment. I could not have it any better.Jenifer has been valiant. She runs the house, feeds us, shuttles everyone around town, saves the dog from expulsion, tolerates my drug-induced moodswings, updates this blog, and has taken on an outside job. Throughout it all, she still keeps a song in her head and looks for every opportunity to crack a joke. She's created and maintained this healing environment. Look at the picture in the next column- isn't she beautiful?Livie and Andy have helped to keep me focused on the future. What great young adults they are.With all that said, let me offer an observation and a challenge for anyone reading this. Consider those persons who are closest to your sick friend or acquaintance. If given the opportunity, ask them how they are doing.I get a lot of attention and I love the opportunity to share my story and prognosis. But it's especially satisfying to learn that folks have asked Liv, Andy and Jen how they're doing. They, as are all caregivers and family members, equal contributors to this joruney.All for now. m

5/7/08 Cycle 2, Day 1Two down, just four to go. 33% complete. On May 28th (Cycle 3), I'll be half way to completion. We'll take more scans after the fourth cycle (June 18) to look for tumor shrinkage and confirm our success. I feel extremely positive about our progress and have experienced noticeable changes in my body. For example, I no longer feel any swallowing restrictions and I can't find the abdominal tumor so clearly detectible just three weeks ago.My day started at 1:00am this morning after an hour nap. Election returns can be such compelling television. I couldn't get comfortable because my hair, on its way out, felt like needles poking my scalp any time I moved on the pillow.My hair had been falling out beginning May 1, to the point where it looked like a cheap quilt on my head. Hair like pine needles- think Charlie Brown's Christmas tree. Bald patches were especially visible on the sides that rested on pillows and where Andy would pull plugs out for amusement.To solve the problem, I woke up Jen at 2:00 to help me shave my head. The problem is indeed solved. Photos are posted for your enjoyment. For anyone who's seen the Austin Powers movie series, perhaps you'll see a likeness to Dr. Evil.We continue to lean on the support of family and friends. I'm reading several books given to me over the past month, most related to spiritual and holistic approaches to healing and recovery. I find them to be a refreshing and imaginative alternative to the clinical treatment I read in the medical journals. My recovery and healing is indeed comprised of personal choices- beliefs, attitudes, forgiveness, patience, foods, doctors and friendships; all in addition to and support of my formal medical treatment. I keep an open mind to all potential treatment options and I've surprised myself with a newfound respect for some of the "left coast" stuff I'd always dismissed in ignorance. I'm glad for friends who challenge conventional wisdom as the be all, end all. (!)Without dear friends and family my basement project would never have been completed either. I ran out of gas about the time the insulation needed to go in ahead of drywall and painting. A very special thanks to Pat who bailed me out big time with the project and for extending an opportunity to Troy and Jim to spend a weeknight painting a friend's basement.With the "right" TV now in place and finished surroundings, it's attractive enough to Andy, Liv and their friends to hang out at home. Again, !.Jen's mom brought home my favorite new 3:00am video, the complete 32 episode, 1st season of The Andy Griffith Show. Yes, more than a little geeky, but comfort zone city. Love that Barney.People have been so generous with blog posts, cards, letters, telephone calls and email, books, customized CDs, videos, flowers, fruit & gift baskets, lots of meals, sand & shells from Siesta Key, and even tomato plants from my mom. I/we remain humbled by the outpouring of sincere caring and support. We pledge to follow your example for others at every opportunity.OK- I'm out of gas. The steamroller is at my front door and I expect to lay very low through the weekend. Same routine as Cycle 1, with the high dosage Prednisone 'till Monday morning, resulting in a voracious appetite. The Dr. says to expect this round to hit me much harder in the fatigue department- probably for the next 1 1/2 weeks. Then I'll get strong again going into Cycle 3, the 1/2 way point.Thanks for your interest and your concern. I read every post and every comment. I appreciate them very much. I am also keenly aware that many, many folks check into the site periodically for updates without leaving comments- I'll do my best to mark any significant news or developments in this column as often as possible. Again, I appreciate the care.Good night. m

4/16/08 Cycle 1, Day 1Today we finally moved the life ball forward toward normal. I'm scheduled for six cycles of chemo, one every three weeks. The treatment process itself is very routine, but long (all day) in my case.The nurse spent the first couple hours installing the IV and administering a mix of pre-treatment drugs. That's followed by a couple hours dripping in Rituxin, the big killer. The last drugs are pushed in by the nurse, which took just 40 minutes.If you're interested, here's the recipe for my R-CHOP cocktail:RituxinAdriamycinCytoxoanPrednisoneVincristineYou can scramble these words ten ways to spell the word "toxic."Price tag for today's cocktail: $9,300. Pre-treatment and nursing care additional. Thank you.I feel fine but I'm told to expect considerable fatigue within a couple days. Nausea will be controlled by Phenergan tablets if and when needed.Within three weeks I'll proudly sport the Mr. Clean look.Jen continues as my advocate, keeping everyone in line. She reviewed my files today (until confronted by my nurse) and tells me I'm categorized as a "pleasant 47 year old male patient." Outstanding. The files weren't spotted the rest of the day.

4/15/08I still have cancer. We've taken all the recommended and optional steps to prove it several different ways during the past three weeks.So now we kill it, or "melt it away" as my oncologist would say. Either way, all systems are go for this Wed, 4/16, to begin the first of our six-cycle tour. I've never been more determined to succeed and lead.For all the known lymphoma types, mine, large B cell non-Hodgkins, falls right in the sweet spot for chemo's effectiveness and boasts the highest percentages for treatment and cure. By Thanksgiving I'm likely to have this behind me/us. For perspective and solice, I look back at how quickly the past six months have elapsed.It's very clear to me how many hundreds of people my story has reached. Humbling can't begin to describe the response I've received from the furthest reaches and every possible medium.It should be very clear to anyone reading this how important Jenifer, family and extended family is to me. Now that the initial shock is over, a path to an end has taken shape. We've leaned so very heavily on our parents, family and extended friendships for a month now. No one should have to go through this any other way- I'm very fortunate.Thank you. Thank you for your prayers, cards, visits, calls, posts, email, encouragement, meals, heavy lifting, driving, shuttling, song references, Whoville shoutouts... all of it. Thank you.Also obvious. Jenifer is our foundation. I do appreciate all the love and support that's coming her way. Without her this campaign would be shaky, at best.I'll do my best to post weekly updates to document my tour. "It depends on you and your body." That's the answer to nearly every question we ask related to "what will treatment be like?" So we're about to find out.Mark

4/2/08 I have cancer. It's a sentence I've found myself thinking often during the past ten days. On 3/17/08 it was suspected, on the 25th it was preliminarily diagnosed, and today, 4/2/08, biopsy results confirm a B Cell lypmphoma. Definitely cancer, definitely treatable, likely curable.I know the cancer community is close knit and takes care of its own. Comforting.When entering the "cancer center" for the first time lonliness hits suddenly. Odd.Cancer is just below the surface of everyday life, yet I still found it easy to ask early on, "I can't believe I have cancer." Odd.A tough year to follow but my spirit is high, my determination unshaken. I'll be fine. My family will be fine. It's good to be alive.

Just Beyond That Rise