Just Beyond That Rise: ONLY ONE TOUGH NIGHT SO FAR

Sunday, April 20, 2008

ONLY ONE TOUGH NIGHT SO FAR

After the first chemo treatment on wed., things have been pretty good except for Friday night. Mark is taking such massive doses of Prednisone (steroids) that he had some bad uncontrollable shaking and moving all night. The Doc on call told him he could take a benadryl but it did not help. I looked over at him when he finally fell asleep and he was twitching intensely. I guess your body has to eventually fall, doesn't it? He is still in a lot of pain from his latest surgery but gives in to the vicodene and that helps.

We had a great celebration today for Livie. She was confirmed at our church this afternoon. Mark's whole family came down from Crown Point to share the day with us. She looked so pretty. We had a picnic with fried chicken and all the fixings, yummo.

Andy had a doubleheader yesterday and had a double, a few singles and a walk. He is a great little ball player. He will also literally take you down when it comes to guitar hero!

I am going to start tackling the trim work in the basement. It has to be painted before the rest of the walls can be done. The new carpet will come on Friday. I think this basement thing is really going to happen. It will be a nice place to hang.

Thanks again to all of you for your prayers and thoughtful words. They mean the world to us. We will always be grateful.

love,
jen

2 comments:

Anonymous said...: Jen: Thanks for the post. You guys are in our prayers every day.

Partner, Livie is a beautiful girl and I know that inspires you to fight this thing.

We are here for you, now and for the long haul. Call when you feel like it.

We'll pray that Friday night was the worst and only bad night for this round.; April 20, 2008 at 8:54 PM
Anonymous said...: Jen, thank you for including me on your distribution list. Livie, congratulations on your confirmation, a milestone in your spiritual walk and a step toward adulthood. Your entire family has been in my thoughts and prayers since the cheer meeting when you shared Mark's diagnosis with me. In fact, there are many people praying for you in my small circle of influence. God bless all of you! Holly Forman; April 28, 2008 at 8:47 PM

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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

Sunday, April 20, 2008

ONLY ONE TOUGH NIGHT SO FAR

2 comments:

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