Both of Us .org

I've sensed a low grade pressure in my head for several days now. It does not really hurt, but feels like there is a constant slow pressure in my skull. Not pain, but the feeling that a headache could come at any time. Brain tumors remain in my head. The image at right is not my MRI.

After my last MRI, Dr. A said that the metastasis in my brain look very stable, so concern is likely unwarranted for now. If a future MRI were to show increased tumor activity, I could have another Gamma Knife procedure, which would hopefully be as effective as the last one appears to have been.

Work has been going very well and my colleagues tell me that I look good. I have put back on some weight and my hair is making an attempt to grow back.

I'd like to get out and start playing soccer again, but I am not sure that a high level of physical activity will be good for me. Increased blood flow and aerobic activity would stimulate muscle growth, but could stimulate tumor growth as well. I am sitting on the fence on this one.

Labels: Melanoma, MRI

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

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

I have not written for a while, not sure which direction to go in. Lots happening in my life, not as much time or motivation to write about it all.

A telephone call this afternoon has narrowed my focus. The call was from Dr. A. who had gotten a chance to look over the MRI and CT scan that I had done on Wednesday, March 5th. He mentioned that the tumors in my lung were growing quickly and that there were several new tumors in both my left and right lungs that were not there on the December 31 CT scan.

This is not great news for me.

I have an appointment to talk with him about starting a regiment of Interluken 2 (sp?) as early as next week., This is an immune boosting approach to fighting cancer that causes you to be quite sick for about 10 days, followed by ten days of relative health. I am not sure what this will mean.

I had been considering traveling to the Gerson Hospital in Mexico with my mother for about the past week, but I realize now that my habit of hesitation is no longer a viable approach to solving my problems.

I wonder how starting a cancer therapy will affect my body and my spirits. I wonder if it will mean not going to visit my sister in Colorado as JSP and I had planned. I wonder if the therapy will help me at all or only make me sick. I wonder what I should do.

In a few minutes, JSP will come pick me up from work and I will tell him what I have learned. We will drive home through this wonderful spring thaw weather and I will hold his hand while tears flow. My tears will mix with the water flowing down the street, melted snow. The water will run down the sides of the street until they plunge unseen into a culvert and be carried through the storm sewar to the Mississippi river.

Meanwhile I will look into JSP's eyes and I will be happy that he is with me to help me decide what to do.

Labels: CT, friendship, Melanoma, MRI, winter

Last night I played soccer. My team (the Matrix in a Rec "B" league) came back from a 1-3 deficit to win the game 5-4. The teams I play with (Orange Crush) in two co-ed league nights)on Sundays and Mondays have each also won this week. I was fortunate to play three games in the last four days and win each of those games.

On the minus side, when I got home from the game last night, I was pretty sure that I had fractured my left forearm during our game. I am not playing soccer tonight.

My hair started falling out in gobs yesterday. Hair fell into everything, in my mouth, pillowcases and all over the sink. I just wanted it gone.

This morning at 4:45 AM I asked JSP to use the hair clipper to take my hair off. After trimming down the unruly and rapidly thinning mess on my head, JSP helped me to get dressed because I was not able to use my left arm with out We made ready to leave and I was at the hospital by 5:40 AM.

I looked disgusting this morning. Yes, those metal pins were anchored into my skull for most of the day today.

Shudder, now look away.

If you want the basic run down of the procedure, feel free to go back to my January 16th Gamma Knife in Your Brain posting.

The specialized MRI today helped the medical team decide to treat three of my largest brain tumors. Dr. Paul, after reading today's MRI called my other, smaller tumors "wispy" suggesting that the whole brain radiation that I had done during two of the last three weeks may have had the desired effect of shrinking or stopping their growth.

After the MRI, technicians did an Xray for me of my possibly fractured arm. Luckily the images of my arm showed no fracture. I was positively surprised by this information and am happy that my left arm will heal faster now that there is actually nothing wrong with the bone. I may take to the soccer pitch again next week after all.

JSP was with me during most of the time I was at the hospital today, of course he could not be in the room during therapy, but he was a rock for me, proving to me time and again that he loves me and will do anything to make this easier for me. He even smiled calmly when he took the above Frankenstein monster photograph of me.

I was sent home this afternoon and have been relaxing and consuming fruit and vegetables and some juice.

I am feeling tired out by the days events, but otherwise doing well.

Honestly, the only truly terrible part of the treatment was having that frame anchored in my head. Dr. Paul and the neurologist and the physicist were each very professional while still being lots of fun. My nurse, Trixy, was also really wonderful.

I felt fortunate to have this all done so close to home. I am thankful for many things, including my partner, my family and friends, my colleagues at work, my health insurance, and the fine doctors and staff in Radiation Oncology at the University of Minnesota.

Labels: Melanoma, MRI, radiation

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