tis the season

These are the days, aren't they? The days we've fought so hard for, the days we dreamed of during Kevin's long, long treatment. Thanksgiving is just the best holiday: wonderful family around us, a house full of fantastic food, and a heart overflowing with blessings and gratitude.

Kevin continues his final phase of the chemotherapy treatment. He has 6 months of treatments, which mostly consist of daily oral chemo. He doesn't feel sick, only fatigue, fatigue, fatigue. He feels it down to his bones, along with aches and pains. His broken ankle is slowly healing, probably due to the chemo, and he still walks slowly and with a limp.

BUT...he is worlds away from where he was last year! Slowly, incrementally it seems the dark curtain of his illness is lifting. It's easier to forget about the cancer these days - what a welcome relief from last year's daily barrage of illness and treatments.

So it's on to Christmas for us, starting last weekend with the opening of our tree farm. Yet again, our family and friends have rallied to run the farm in Kevin's absence, giving up their December weekends to sell our trees and wreaths. (If you feel the need to read more about us, [who doesn't??] you can check out our website at www.lazysusantreefarm.com. You'll find a wonderful article from our local paper about the tree farm & all our support.) Who knew we were so blessed and who would have thought leukemia would have brought all these blessings?? Like I said, these are the days!

Healing Nicely

Kevin got his cast removed today so the doctor could inspect his incision. It's healing nicely and his 10 staples were removed. He was recasted in a fluorescent green cast, in which he'll remain for 4 weeks. After that he'll be in a removable boot and be able to put pressure on the foot. The doctor also cleared him for restarting chemo, so if Dr. Strair agrees, he'll be back on track tomorrow.

Believe it or not, his ankle looks a lot better than it did 2 weeks ago! At least we're making progress.

Never a dull moment!

Sorry for the long silence on our blog, but it's been nice not to have any leukemia news to report!

Kevin has continued on his maintenance protocol, with daily oral chemo and monthly IV chemo. Overall, he has handled it pretty well. He has no complaints of feeling ill or nauseous. The biggest problem is the chemo-related fatigue. Almost every day he needs to nap and a few days a week he spends the whole day in bed. The fatigue is unpredictable and frustrating for Kevin, because he otherwise feels pretty good. His last bone marrow biopsy at Johns Hopkins in May showed no leukemia, so the chemo seems to be doing it's job.

Because his fatigue has been so erratic, Kevin made the difficult decision not to return to work just yet. It had been his hope to return to work in mid-June, after a month on the maintenance regimen. But after much discussion, we both realized there was no way Kevin could be functional for 40+ hours a week, especially with his physically demanding job. Dr. Strair suggested that his body may adjust to the chemo after 4-6 months and he may gain more stamina. Kevin's going to revisit this issue with his employer in September, based on how he's feeling. In the meantime, Kevin does have days when he feels well enough to work out in our Christmas tree fields. He's been able to mow, spray, and tend to his trees, hoping to gain back some muscle strength and stamina. He tries to stay out of the soil, as there are real concerns about fungal infections because he's immuno-suppressed. I'm sure Dr. Strair would prefer he had a desk job, but there is an immense mental/emotional benefit for Kevin in doing something he loves. So we try to balance precaution with good mental health!

Now, in the never a dull moment category....

Two weeks ago Kevin had spent the better part of three days in bed, exhausted from the chemo. One early morning, while I was out exercising, he woke up feeling much better, had a wave of nostalgia come over him, and decided this would be the day he would try to ride his unicycle on our gravel driveway. The one he got for his 12th birthday. On his second attempt, he fell off, landed on his ankle and broke it in 3 places. Luckily, Drew was outside with him and was able to get him the phone to call me. After a trip to the ER and 3 visits to the orthopedic office (because we haven't spent enough time in medical offices this year!), Kevin had surgery to repair his ankle last Wednesday. Needless to say, he has provided comic relief to his doctors and nurses. It's the first time Dr. Strair has had a leukemia patient who broke his ankle riding a unicycle, go figure. I'm giving him the benefit of the doubt and blaming his questionable judgement on chemo brain.

So Kevin now has a plate and 5 screws in his ankle. He will be in a cast for at least 5 weeks and then off to physical therapy. Of course all this is complicated by his leukemia. Because he needed surgery, Dr. Strair pulled him from chemo for about 3 weeks. This makes me nervous, but we need to do all we can to prevent infection. Because of the leukemia, Kevin is also at a higher risk for deep vein thrombosis from being immobile, so I have to give him daily injections of a blood thinner until he is out of the cast. He returns to have the cast and stitches removed on Thursday (he'll be recasted). If all looks good, we are hoping he can restart chemo on Friday.

Hopefully, there's a lesson in all this: next time Kevin wakes up from a multiple day chemo stupor, he decides to shoot hoops instead!!

Here's the ankle in question and the 35 year old unicycle:

With a little help from my friends

In yesterday's New York Times, there was an article about the power of friendship in maintaining your health and well being.  People with strong networks of friends are less likely to be obese, less likely to die of breast cancer and serious heart conditions, and even less likely to get colds.  

We don't need research studies to realize this; we have lived it for the last year! The feeling that someone's got your back, someone's carrying you when you can't walk anymore, someone's a phone call away with a solution, some chocolate, or a half-hour to listen to your worries is irreplaceable. To know we're not walking alone is a gift unlike any other. So here's to friends and family!!

Welcome to our Pharmacy

Kevin is a man who always hated taking medicine, refusing a Tylenol for a headache or any cold remedies (in contrast, I've always been a "better living through pharmaceuticals" kinda girl).  So, here we are, 10 months into our cancer journey, and Kevin is taking anywhere from 10 to 25 pills a day. Multiple pill bottles with the mega-sized pill box to match! He does it without complaint and has learned the ins and outs of managing the associated side effects. 

Yesterday was Day One of the maintenance phase. Most of the medications are oral, thankfully, but the regimen is fairly complicated. One Day One, Kevin has to go to the Cancer Institute for an IV push of a chemotherapy drug, vincristine. On Days 1 -5, he takes a pretty big dose of prednisone, which gives him lots of energy and a huge appetite. The last time he was on steroids, I would awaken at 2 in the morning to the sounds & smells of him preparing his second dinner! On Day 2 he takes an oral chemotherapy drug, methotrexate. And every day of the month he takes another oral chemo drug, 6-MP. In addition he takes daily anti-fungals, anti-virals, and anti-biotics. The schedule repeats every month until June, 2010, with weekly blood work and monthly doctor's visits.  He will also get bone marrow biopsies every 3 months at Johns Hopkins, hopefully to avoid any more confusion about the DNA testing looking for leukemia. 

Kevin looks great and feels pretty good too. His energy is returning after the last heavy-duty dose of chemotherapy in February and March. The maintenance phase will hopefully be less intense than previous phases. Dr. Strair thinks he may be able to go back to work in June, depending on how he's feeling. That's great news for Kevin and hopefully a glimmer of light at the end of this tunnel. He will be limited in his outside work (no Christmas tree planting, digging in the dirt, splitting wood, etc.) for fear of fungus/mold/mildew in the soil and trees that could be a serious concern for someone who is immuno-suppressed. Anyone who knows Kevin will understand that being outside and working with his trees is his passion and he's a little lost without that outlet. Never fear, though, I have plenty of safe, inside tasks to keep him busy...!

We had a lovely Easter with our family and also enjoyed a week in the Outer Banks, thanks to our sister-in-law's sister, Ellen Maialino. What a pleasure to be together as a family, to have a week without a doctor's appointment, and to have Kevin feeling fairly good. After going through hell, these simple, simple pleasures are so important to us. 

I follow the blog of Dana Jennings, a reporter for the NY Times, who has aggressive prostate cancer. His last post spoke to me, especially during Easter.

We are about to enter a holy few days for Jews and Christians. Passover starts at sundown tomorrow, and Easter is Sunday. But then again, when you’re a cancer patient, each day is a holy day – no matter what your beliefs.

I have spent the past year in the dark ark of cancer, and there is no question that I have become a new man. I’ve been granted a wisdom that only arrives at the rugged confluence of middle age and mortality. And I know, soul deep, that I have not been cut open, radiated, and tried physically and spiritually so that I can merely survive, become a cancer wraith. Since my diagnosis — after shaking off the initial shock — I have kept asking myself, in the context of my belief: What can this cancer teach me?

The most surprising thing I’ve learned is that cancer can be turned toward blessing. Through the simple fact of me telling my cancer stories on this blog, many of you readers, in turn, have told your own stories. And that mutual sharing of our tales has changed my life for the good. Rabbi Abraham Joshua Heschel said, “Life is not meaningful … unless it is serving an end beyond itself, unless it is of value to someone else.”

None of us would choose to have cancer. But getting this unexpected mortality check has deepened my appreciation of and connection to this life. Each moment holds out the promise of revelation.

Cancer, like faith, urges us toward the essential in our lives, toward love and kindness and paying attention to the smallest, smallest detail. We suddenly understand that ice chips spooned into a parched mouth, that being able to simply urinate, are gifts, the kinds of ordinary gifts that make up our lives.

So thank you for sharing in our story, for praying for us, and for the many, many gifts you've given us. 

The results we were hoping for!

Dr. Meade from Johns Hopkins called us this Saturday with Kevin's bone marrow biopsy test results. It was good news! Hopkins did not find any evidence of leukemia, using the most sensitive tests the medical world has to offer.  The concentration of T-cells that was first found in October on a bone marrow biopsy was completely unrelated to leukemia and was polyclonal, not monoclonal. T-cells that indicate leukemia are monoclonal. Evidently, the tests Dr. Strair ordered in Seattle were not sensitive enough to detect the difference.  So, either Kevin is cured of leukemia already or the leukemia cells are there, but undetectable. 

And the most important result: the transplant team at Hopkins is not recommending a transplant for Kevin! As we've known from the beginning, the risks of a transplant are very high and potentially life-altering. In addition, the cure rate for a transplanted ALL patient is a dismal 30%.  Anytime you can avoid this most risky procedure, it's good news.  Dr. Meade believes that Kevin's chance of a cure with the chemotherapy regimen is about 60-65%, which is what Dr. Strair told us last summer. Because Kevin has T-cell ALL (as opposed to B-cell) and he went into remission very quickly last June, his chance of a cure increases. The benefits of the transplant just aren't worth the high risk, especially since Kevin would need alternative cell sources, like half-matched siblings or umbilical cord blood.  With the low odds and high uncertainty associated with transplant, Hopkins believes that chemo is the best course for Kevin. 

We have yet to meet with Dr. Strair about this, but our guess is that he will be in agreement. Kevin has finished his intensive chemo and will now move to the maintenance phase, which is less intensive and should allow a more "normal" quality of life.  He will still be fatigued and immunosuppressed while on this chemo course. We meet with Dr. Strair next Tuesday and hope to have a better sense of a timeline, including when Kevin might be able to return to work. 

I've written before about how cancer resets your priorities and your definition of success. Who would of thought a year ago that we would be celebrating ONLY a year and half of chemo for Kevin?! But compared to the massive and scary undertaking of a transplant, this does seem like a victory to us.  We've yet to win the war, but we just scored a major battle! We both feel celebratory and we'll take our victories when, where, and for however long we can.  For the first time in months, we feel like we can fully expand our lungs and take a deep breath. 

I keep reflecting on our timeline that led us to this point. Three days before Kevin was to enter the hospital for his 9/10 transplant, our donor backed out for medical reasons. We were quite disappointed and I spent days determining our next steps. At Dr. Strair's suggestion, we headed to Hopkins where they proposed running their specialized testing.  And here we are: no transplant necessary. Three days away from a dangerous procedure that Kevin seems not to need now. Luck? Coincidence? We believe it was the power of prayer and pure grace that opened this door for us. And we thank all of you for your continued prayers and for your gift of grace: your companionship, your compassionate listening, and giving us stamina and guidance. We've still got a long road ahead of us, but our passage feels gentler now and we're travelling with lighter hearts. 

Back from Baltimore with a pain in the back

We visited Baltimore on Monday and, aside from the big needle they put in Kevin's hip, it was uneventful.  They were very efficient, drawing his blood and performing the biopsy in record time. We should have results in about 2 weeks, results that will hopefully determine our course for the immediate future. 

Kevin has one more day of intense chemotherapy tomorrow.  This is a big milestone...8 months of any number of types of cancer killing therapies delivered in various ways (through an IV, into his spine during a spinal tap, shots in his arm, shots in his belly, orally, and 12 days of radiation).  It certainly wasn't a vacation, but Kevin handled most of it with courage and grace.  He was very blessed to have few bumps in the road, only one treatment-related hospitalization, and few complications. Since we've spent the last 8 months resetting our priorities, we believe his stamina and success are gifts and for that we are very grateful.  

While we await the Hopkins test results, Kevin will have 2 weeks off from all chemotherapy. He will likely need some blood transfusions over the next week (he's getting one unit tomorrow) to help him recover from the chemo. Then, if he doesn't move to a transplant or it's delayed, he will begin the 1 1/2 years of maintenance chemo. Getting to this point is a victory!

Thanks to Kevin's niece Erica and her boyfriend Daniel for spending the day with us Monday in Baltimore and sparing us the scary dining experience we had last time we visited! And thanks to all our family and friends who share their time, talent, and resources with us. We wouldn't have gotten this far without you.