Both of Us .org

Two of our Dutch friends, Pascal and Henzz, are flying into Minneapolis this afternoon. JSP and I are excited to see them and to have them stay at our home. We knew them from our years in Groningen, but both each now live independently in Amsterdam.

I spoke with Dr. A's nurse today and she is sending my MRI and CT/PET scans to the administrative people in Bethesda, so it appears that was the hold up. So the waiting on that continues, but I am not in any hurry to check into a hospital again, even the National Cancer Institute (NCI). So color me happy, both because it seems I have a bit more time to live a "normal life" before my next treatment, and because I identified why I was hearing nothing from NCI.

Labels: clinical trial, CT, friends, Melanoma, MRI, PET

On Wednesday of last week I went in for a PET scan. This is a specialized type of CT scan where they inject one with radioactive sugars and then watch where these sugars go. These sugars go to tumors mostly, and the technicians are able to capture images that provide a pretty good picture about which tumors are active and growing. My previous PET scan was on December 31, 2007. I also had a CT scan in mid-March which was not as detailed as the PET scan, but still provided useful information. PET/CT scans are useful as data points in tracking the progression of the tumors in my body, especially in internal organs like my lungs.

On Monday of this week, I had an MRI of my head done. This was done to get a good image of what is happening in my brain. I had my first MRI on December 31, 2007, another one in February before my Gamma Knife treatment, and one in mid-March. All together these four scans provide a good story for what is happening in my brain.

Today JSP and I met with Dr. A. and he told us what he read in the most recent scans, and what the implications of the data from all the scans together mean for me in the near future.

I was not surprised by anything Dr. A. had to say and for the most part I think I predicted fairly accurately what is happening in my body.

First off, regarding my brain, there is only good news. The latest MRI shows improvement over the mid-March MRI. There are no new detectable tumors in my brain and the tumors that are there were shrinking or stable. This is important to me for a number of reasons. First off, clearly I don't want brain damage from tumors. Secondly and just as importantly, my brain tumors were stopping me from being eligible for experimental cancer trials happening in Bethesda Maryland at either the National Institute of Health or National Cancer Institute. One or more of these trials show the most promising current experimental treatment for melanoma. I have been hoping to qualify for these trials. It appears that because I have had a stable brain for the past three months that I may now be eligible for one or more of these studies.

Another thing that my stable brain suggests is that the whole brain radiation and Gama Knife treatment that I underwent in February, while frightening at the time, were exactly the correct treatments for me. Hooray for that!

Dr. A. also spoke to us about the most recent PET scan. He said that the most recent PET scan shows that the tumors in my skin, muscle and lungs are still growing and that new tumors are appearing in my skin with regularity. Most importantly the tumors in my lungs are larger than they were in mid-March. This was not a surprise to me because I know that the tumors in my skin have been growing and that new tumors have been appearing in my skin. I correctly assumed that the tumors in my lungs were behaving roughly the same as those in my skin. The PET scan suggests that the IL-2 treatments that I underwent did not have a dramatic effect on my cancer's growth rate. This suggests that I will not undergo IL-2 treatment again. Hooray!

Dr. A. is making some phone calls on my behalf, and he said that I should expect to hear from someone in Bethesda, Maryland in the next week about possible treatments. I could end up going at anytime for treatment there if I am accepted into one of the clinical trials. Dr. A said that in his opinion I am a very good candidate for clinical trials based on my relative youth and easy going nature.

Washington DC here I come.

Luckily I have several good friends in the Washington DC area, so if I go there I will have some social support.

At the clinic today I was weighed, and from my scrawniest size in April when I was only 130 pounds, I have now gained back 20 of the 30 pounds that I lost. When I saw the scale read 150.2 lbs today I was very happy.

As I tell everyone who asks, I have been eating like a horse. My favorite foods have been Palak Paneer (an Indian dish made from spinach and Indian style cheese) and sushi/sashimi.

Two of our good friends from the Netherlands, Henzz and Pascal, will be visiting our home during the first week in June. I hope that if I am selected to be involved in a clinical trial that my treatments will start after their visits are over, as I am really excited to spend time with my dear friends from Holland.

Labels: CT, friends, Melanoma, PET, radiation, recovery

The last week has gone very well.

I was released from the hospital on Sunday of last week after receiving all fourteen of my scheduled IL-2 doses. Having changed pain medications from Demerol to Morphine made a big difference in both my comfort level in the hospital and my state of mind at the end of treatment

My recovery week started with the assistance of my sister Julie. When she left to return to her home in Colorado, my intimate friend Cees de Vries arrived in Minneapolis from Holland to help look after me. On Thursday Cees, Connie and I went for a walk at Lake Calhoun before stuffing ourselves with sushi at Sushi Tango for lunch. Cees returned to the Netherlands on Sunday, May 5.

Also on Sunday, one week after being released from the hospital, JSP, myself and my nephew Matt went to the MayDay celebration at Powderhorn Park. The weather was wonderful and the pageant was beautiful. The Tree of Life gave birth to all manner of creatures and the Sun crossed the water signifying the return of spring.

My goal to eat everything in sight has been moving forward in the last week. I want to put thirty pounds back on that I've lost since December.

This week I am back at work and feeling strong and clear minded.

Later this week I go in for an MRI and PET /CT scan, then next week I will meet with Dr. A to discuss what we find on the images. The best case scenario would be that the tumors in my lungs and brain will show no growth. The tumors in my skin have undenaibly grown in the past month, logically the tumors in my organs have grown too. I hope that the IL-2 treatments have slowed this process.

Labels: CT, Melanoma, MRI, PET, recovery

There has been a long absence of posts in this space, and that is because JSP and I have been going through some life changing experiences lately. On December 26, 2007 I received some bad news from one of my doctors. Some tissue that I had biopsied showed that I had metastasized melanoma, a particularly aggressive and difficult to treat cancer.

The tone and timber of this blog will be different from now on, there may still be the occasional food or entertainment reviews, political pieces, and writings about hobbies, but from this time forward this will be where we also document our journey through cancer. Below is a short synopsis of what has happened so far.

I had skin cancer (Melanoma) in 1998 and it appeared a that time that I was one of the lucky persons who seemed to have caught it early. I was 22 years old and I had gained a sense of my own mortality. Doctors at the time told me that the chances were that if it was going to recur that it would likely recur in the first five years. After many years had passed, I felt that I had been really lucky, and hoped it would never come back.

On December 26, 2007 I learned the result of a biopsy test that I had done on some small lumps which my dermatologist removed from my torso. The biopsy results conclusively indicated massive systematic Melanoma in my body. The results were not completely unexpected to me, but were still quite difficult to hear. The cancer that I had struggled with when I was 22, returned almost 10 years later.

Subsequent PET and CT scans, taken on December 31, 2007, showed that I have tumors in several places under my skin and two tumors in my lung. This confirmed the diagnosis of systemic cancer and gave me a baseline for how developed the cancer is at this time. An MRI that I also had done on December 31st showed that I have brain tumors. I learned of these test results from my doctor and his nurse on January 2, 2008.

The brain tumors were a shock to me, partly because I have not had headaches, motor skill problems, behavioral changes, or any other symptoms of brain tumors. As you can imagine the brain tumors were not welcome news. My oncologist promptly communicated that in his opinion the course of treatment for my brain tumors was to have whole brain radiation therapy to combat the smaller visible brain tumors and the unseen brain tumors. Once this treatment was completed he suggested that a Gamma Knife procedure be used to target one or more of the largest tumors that may not be knocked out by the first wave of radiation.

I have felt hesitant to submit to the brain radiation therapy, because I currently feel so good. I am afraid that in the short term, at least, that this will lower my quality of life. The potential side affects (including decreased cognitive function) are frightening, however I know that leaving the tumors to grow in my brain is not a wise option and that brain damage, if it should occur due to pressure from the tumors, would most likely be irreversible. With this in mind I am planning on gogin ahead with whole brain radiation therapy. My first radiation therapy session is this week on Thursday, January 10, 2008 at 2:00 PM. As I understand it this therapy will go for 2 weeks, M-F. I also understand that the effects are cumulative, so the last session swill probably be much harder than the first few. Optimistic thoughts are hard for me to come by about this, but the treatment seems preferable to not being treated.

On Wednesday, January 9, 2008 I'll talk with my Oncologist, Dr. A about systemic treatment options.

I am still going to work as normal and feeling fine, asymptomatic for the most part except for the small tumors I can locate in my skin.

Before my diagnosis, I was planning to play soccer four nights a week with my soccer team. I enjoyed playing in a game last night, and I shot our team's only goal. (We tied 1 - 1.) I am unsure about my ability to continue playing soccer while receiving radiation therapy, but if I can play, I will play.

In addition to the allopathic (traditianal medicine) treatments that my doctors have described, I am also using a book on the Gerson Therapy to guide my choices regarding dietary intake. I am hoping that moving toward a diet rich in fresh organic fruits and vegetables will help strengthen my immune system both to brace my body against the cancer and against potentially toxic cancer therapies.

I want to live a long time and I am thinking of my body as a garden and this cancer as a weed. I hope to be able to tend the garden and keep the weeds in check for years to come.

Labels: CT, Melanoma, MRI, PET, radiation