Two years later: survivorship issues

It was two years ago today that I found out about the tumor. I don’t really remember that day or much of that week. But over the next few months I thought of myself as a cancer patient, then as being in remission, then of being in recovery from treatment. Eventually I started to see myself as someone who used to have cancer. I went back to work, started to do the things i enjoyed again, started to look and feel like my old self. I also got on with life. I got married, moved across the country, found a new job.

I knew that my body had changed from the illness and the drugs. I had gained weight but lost strength, and my feet and legs always hurt. Recently I found out that my legs weren’t just tired and sore. I have a condition called ‘avascular necrosis’ in both my hips, but it’s much worse in the right hip. It’s linked with using a class of drugs called corticosteroids, which I took to reduce swelling in my brain. The right hip is damaged to the point that it’s hard for me to walk without a cane or crutches.

Last month I went to California to see Dr. X for a check up and she was very worried to see me using the cane – I had used one to help with balance when I still had the tumor. She was very relieved that I ‘only’ had a collapsed bone in my hip! She called it a ‘survivorship issue.’

So right now I’m walking on crutches to try to keep weight off the worse hip and I’m going to have a surgery called ‘core decompression,’ in which the surgeon drills holes into my femur in the hopes of relieving pressure and encouraging new blood flow to the damaged part of the bone. If that doesn’t work, the only remaining option will be a total hip replacement.

I’ll get through this issue eventually, but right now I’m feeling a little bitter about having another health problem to deal with. The best part about surviving cancer is not being dead, but the rest of it isn’t always fun. My boss took me off the work schedule because he saw me using crutches at work (which I think is pretty unfair, but that’s a separate topic.) Now I’m unemployed and hobbling around the house until I get my surgery.

Despite all that, I’m feeling pretty happy about being two years removed from my diagnosis. Each month that passes makes it more likely that I will be forever free from lymphoma. And besides the sore hip, I feel pretty good. I’m starting to settle in to my new home in Rhode Island, and looking forward to summer when Sayer and I can slip our kayaks into the Atlantic.

Thanks for checking in.

Chris

 

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The Return of the Elusive Mountain Man!

Welcome Back! It’s been months!

We’ve been so busy with LIFE!!  and living it that we have neglected our website. But for those of you who visit for inspiration or education or just for curiousity, I wanted to update you on Chris progress and the pages we’ve turned in our lives. Since I last wrote, Chris hit his one year in remission!, his 1 1/2 year in remission!!, we’ve climbed and conquered Mt. Whitney, 14,505ft up! (the highest peak in the 48 contiguous US states), we’ve had our official and joyous wedding reception in NH with 120 guests and we’ve moved from San Diego to Rhode Island!

9-8-12:  Mr. & Mrs. Smyczek Lyme, NH

9-8-12:
Mr. & Mrs. Smyczek
Lyme, NH

Yes, we have been very very busy.

Like I said, Chris is healthy! He is only taking baby aspirin 1x/day as a blood thinner to prevent future blood clots. No other meds. He sees his Oncologist, Dr. X, every 3 months for a MRI-most recently adding a PET scan of his whole body, in which both came back clean! It was scary leaving her, Dr. X, behind in San Diego after putting all our well-deserved trust in her, but the plan is to keep her as a “consulting doctor” while he remains healthy. Basically, he will have a new PCP in RI and in March he will get another MRI. We will bring the results all the way to CA for a visit with his oncologist and if everything looks good, it will be another 6 months before the next MRI. We’re also looking at some highly recommended oncologists here in RI/MA (just as a precaution).

When Chris left CA in November, he was working a 40hr plus work week, with no difficulty at all. He found a full time job that requires standing all day, so his feet get tired and achy (as would anyones), but any work, that also offers paid health insurance I might add- is great.

So we’ve started climbing mountains again. Like I said earlier- we started in August with a big one, the biggest one- Mt. Whitney. 14, 405ft high- 21 miles RT! I felt better on the top then down at 8,000 ft. Chris had a little bit of a struggle breathing, but remember he only has 1 1/2 lungs ( the pulmonary embolisms have seemed to cause some damage to his lungs).

14,505 ft. (CA)

August 2012: 14,505 ft.  Mt. Whitney (CA)

Since we are living on the East Coast now, our mountains are much much smaller. In fact, our goal is to complete the 4000 club- climbing the 48 highest peaks in the White Mountains of NH- which all happen to be 4,000 ft high. We started with the smallest, Mt. Tecumseh- a 4,003 ft mountain right next to Waterville Valley. It was only 5 miles round trip and the breathing/altitude obviously wasn’t an issue, but the elevation gain in such a short distance created a very steep climb, in 5 inches of fresh snow (with a good base) on snow shoes! It was tough for us coming from such warm hikes, but boy was it beautiful.

Up we go.  Waterville Valley NH

Up we go. Waterville Valley NH

IMGP0439

AMC 4000 Club. Peak 1 of 48 bagged 12/29/12. Mt. Tecumseh, 4003 ft.

Chris and I are both working 5-6 days a week, so I’m not sure when the next peak attempt will occur, probably in January sometime. It will either be Mt. Pierce or Mt. Cabot. We are leaving the hard ones (Mt. Washington) for the spring/summer when the snow has melted.

Happy New Year everyone! We’re hoping 2013 was a wonderful as 2012!

On January 28th, Chris will be 43 years young. Make sure you wish him a happy one!

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Yes, you can!

Most of the visitors to this site are my friends and family, but some find this site while searching the web for information about CNS lymphoma, because they or a loved one have been afflicted with this rare disease. This post is for the latter group. If you have researched the prognosis for CNS lymphoma victims, you have probably seen some very grim figures. Most of those figures are NOT current; they reflect studies done before the current treatments were available. Because this disease is rare, there are few, if any, studies that reflect the possibilities for patients who are being treated with the full force of modern medicine.
I was fortunate to have a wide range of advanced treatments available to me; you can read about them in my earlier post, “Then and Now.” Yesterday I saw my oncologist and learned that my recent MRI showed no signs of cancer, my blood counts are almost normal, I’ve lost much of the weight I gained due to the medicines I took, and in general I’m pretty healthy. I do have some residual damage in my leg from blood clots, but that also seems to be improving.
Of course I can’t be sure I’ll never have a recurrence, but I do know that I’ve been cancer free for several months, I’ve married the woman I love, I’ve returned to work, and I’ve had some opportunities to help others in tough circumstances.
Unfortunately, not everyone with CNS lymphoma will respond to treatment as well as I have so far. But I hope people will see that there is hope, that medicine can work, that people do survive to experience happy and meaningful lives.
Si se puede!

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Charity

This month has been a month of charity and appreciation. On April 7th, we celebrated D-Day, Diagnosis Day. It was the most difficult day of my life last year-finding the balance of strength, sanity and support for Chris while our families, our “rocks” were over 2000 miles away. This April 7th we decided to highlight the opportunity of having this day together. A day we both thought would not happen, a year ago.

A week later, I worked an event for a wonderful organization, Cancer for College, in which $50,000 was raised! The organization raises money for college scholarships for young adults who had or have cancer and can no longer afford college due to medical bills. This is the second year I have worked this event (last year raised $40,000). Both years the event was held at my place of work, Blind Lady Alehouse. They closed their doors all day and night, sacrificing the profits, yet supporting a moving cause. Will Ferrell was even there again this year, he even did some bartending!

Blind Lady also hosted an event, in February,  honoring Chris and a baby girl, Lyla and their fights against cancer. They raised each of our families over $4000 to help with medical bills!

Chris and I have since donated 10% of the donation made to us to Kimi Schroeder, a neighborhood-local five year old fighting neuroblastoma. In addition, with the help of our beloved friends, Lisa and Jack of Viva Pops, we are currently in the process of making a organic popsicle, following the recipe created by Kimi herself, to be sold at the store in which 100% of the profits goes to help Kimi and her family with medical bills.

Last night, we went to  a benefit dinner with our close friends Allison and Justin. Bencotto, by far our favorite Italian restaurant in San Diego, opened their doors on a closed night for 200 customers. 100% of their profits went to Rady’s Children’s Hospital Oncology Floor! When we left, the donation was over $9,000. That is ALOT of crayons, toys, stuffed animals, movies, warm sheets, and soft socks!

It is a bonus when you can buy a wonderful meal, or a glass of Pliny the Younger, or a handcrafted organic popsicle or a fantastic bottle of wine and the money goes to charity, but I have learned a very important life lesson- how important it is to be charitable everyday, without expecting a tangible return.

This week we had great news and a minor setback. Chris’s MRI was clean! But his ultra sound showed that the DVT blood clots, we had hoped had dissolved, are still very much present. Chronic DVT . This is a tough one for me to swallow, I know the risks of embolisms and the chromic pain involved. I’m concerned our hikes will continue to be painful for him, i’m concerned that the clot will break off and travel, i’m concerned they will make him keep taking blood thinner which carries it’s own added risks-oh, the worry of a wife…However, he assures me hourly that he is still climbing the exhausting and literally breath taking mountain to a full recovery and nothing will stop him from summiting.

Corte Madera, 7 mile hike

Looking out to San Diego County

Chris in March. Enjoying a stein from our hand built (by me!) kegorator! Looking good!

Charity. It comes in all shapes and sizes; kindness of heart, continual unwavering support, financial donations, empathy and acknowledgement-all equal.  Remember to fill your life with charitable acts everyday and support those who do.

http://www.blindladyalehouse.com    www.ilovevivapops.com   http://www.cancerforcollege.org   http://www.lovebencotto.com   http://www.kousinsforkimi.com          www.rchsd.org                                                   www.youcaring.com/fundraiser_details?fundraiser_id=541&url=lylasbattle

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Then and now

As is the case with many cancers, the treatment options for CNS lymphoma have become much more effective than they were in the past. The first treatment to show promise in patients was radiation therapy. Radiation alone eliminated tumors in almost all patients and forced the cancer into remission, but the cancer almost always returned quickly and the average life expectancy was only about 18 months. I’m hoping for more time than that. Radiation therapy in the past also caused significant damage to healthy tissue and often left permanent loss of cognitive function.
The discovery of the role of chemotherapy in treatment improved patients’ life expectancy to about 48 months when chemotherapy was used in conjunction with radiation.  Still a bit short for my tastes. Many chemotherapy drugs are not effective against brain tumors, because the body’s natural defense mechanisms prevent the toxic drugs from reaching the brain. In order to breach the body’s defenses, CNS lymphoma patients receive methotrexate in very high doses, doses large enough to kill the patient. After the drug has had time to attack the cancer cells, the patient receives the anti-dote; the regimen is called “high dose methotrexate with luecovorin rescue.” Most doctors believe that chemotherapy and radiation are most effective if the chemo treatment begins first, followed by the radiation, although it’s not clear why.
Dexamethasone is a powerful synthetic steroid that serves multiple functions in treatment – it kills cancer cells, it lessens the side effects of other chemotherapy drugs, and it reduces swelling in the brain. It’s the same drug that mountain climbers receive to treat high altitude cerebral edema.
Rituximab is a monoclonal antibody, a drug that is designed to attack only a specific type of cell, in this case “B” cells, a type of white blood cell. It’s made by fusing cells from humans with cells from mice.
Another advance in treatment is the use of intrathecal chemotherapy as prophylaxes – that is, the administration of chemo drugs to patients already in remission to prevent recurrence. These drugs are injected directly into the spinal fluid.
The final option, and the only one I have not yet had, is a stem cell transplant. This involves the injection of stem cells from a healthy donor into the patient in order to allow the patient to produce more healthy white blood cells.

Because all these tools are now available to doctors, people (like me) are surviving a disease that was previously a death sentence.  Hopefully new discoveries will allow more people to recover from this cancer and all cancers in our lifetimes.  If you have the means to do so, please consider making a donation to fund cancer research.  Developments in the treatment of one disease often prove useful in treating other ailments, so you never know whose life the research may save.

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Superbowl Sunday

Wedding Day- November 23, 2012

We have been very busy planning our reception for September, I have forgotten the website. I thought those of you that aren’t on Facebook might enjoy seeing a couple of our wedding photos. XCountry Trip photos to come. And what a wonderful trip it was! 36 hours straight driving to Detroit for 2 days with Claudia, Chris’s youngest sister and her family. Then down to Cleveland for 5 days. We stayed with an old friend of Chris’s, Robin, but got to spend lots of time with the Smyczeks. From there to CT for five days, as well. Hung out with the Dion’s, celebrated Christmas and continued our search for snow. No such luck! After, we took a one day trip up to New Hampshire to scout out a reception venue, with luck! On our way back XCountry, we stayed with friends in St. Louis, visiting more of Chris’s family, a night in Kansas on the road in the back of our car, then New Years Eve in Keystone CO. Our 19 day trip came to a close back home in San Diego and both CHRIS and I went back to work. Today is Superbowl Sunday, I will be rooting for the Pats and Chris the Giants.  Enjoy the photos!

San Diego Harbor

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Big Day Tomorrow

Tomorrow I’ll be celebrating yet another birthday, but that’s not the anniversary I’ll be thinking of.  It will be six months to the day since Dr. X gave me the great news that the nasty illness I had was in remission.  I’ve remained symptom free and all my tests, including an MRI earlier this months, have shown nothing but healthy cells.  I’ll get MRI’s of my brain quarterly for the next couple of years, just to make sure there’s no recurrence.  Unlike the last one, they will not be scheduled on a Friday.  It’s really not that much fun waiting until Monday for the results!

I’ve been feeling better and I’m resuming many of my normal activities, but I’m learning that it takes a long time to recover from all the side effects of the treatments I received.  Last weekend, Sayer and I hiked up to Cuyamaca Peak, about a six mile walk up and down a steep hill; my legs still hurt.  I’m going to keep at it, because I really want to get back in shape; someday I want people to tell CNS lymphoma patients, “I know a guy who had that, and he’s out climbing mountains right now.”

In an exciting development, I was finally able to go back to work on a regular basis this month.  It’s a great feeling to be earning a little money again, and it helps to make me feel that my life is getting back to normal.

I’ve now been married for two months, and we a are planning a reception in the fall.  I know, it’s probably a little more traditional to have a reception the same day as the wedding, but Sayer and I like to do things our way.  Plus, we did have kind of unusual circumstances.  Anyway, we picked a spot, in New Hampshire, and it should be a beautiful fall day to celebrate our wedding.

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