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

One aspect of my life that I have power over is what I choose to put into my body. As a stage IV cancer survivor, I believe that food is one of the strongest therapies that I have to help keep the weed of cancer in check.

Friends and family ask me if I am still following the Gerson Therapy. I have never been able to follow the full recommended therapy to the letter, but I have taken principles from what I understand to be the philosophy and basic fundamentals of the dietary approach to healing. First off, I believe that my body is capable of fighting my cancer.

After my initial diagnosis of Melanoma in 1998, I lived in remission for nine years without chemo or any other therapy. To me this means that my body was keeping this cancer weed in check. I was vegetarian and generally ate very well. I was athletic and also drank alcohol but not to an excessive degree. I believe that I without knowing that I still had cancer in my system, I was helping my body to keep it in check via the choices I was making in my diet.

The principles that I follow from the Gerson therapy include

• drink as much fresh organic fruit juice as is reasonable, for me this is about 4 cups daily
• eat a vegetarian diet consisting primarily of fresh and organic fruit, vegetables, and grains
  
• follow an 80/20 ratio of allowing myself to eat 20% of things which are not vegetarian organic things, such as sushi
• avoid refined sugars and flour most of the time
• avoid alcohol
• avoid taking prescription and over the counter drugs when possible
• use appropriate dietary supplements, guided by Gerson therapy recommendations
  
• use coffee enemas twice daily, when possible, to assist the gut with elimination of waste products and toxins
  

I do not see this path a way to "save myself" but rather as a way to enjoy a healthier and possibly longer life. I do not have any hard evidence that following this regiment is helping my body, but I believe that choosing to put primarily fresh organic foods into my body will increase my quality of life, even if it does not prolong my life.

The 80/20 rule lets me justify stepping away from the rules of my diet for a special occasion, or even an occasional craving for Afghani pizza. Flexibility and taking pleasure in eating are equally important to me as putting healthy food into my body daily.

Labels: food, juicing, Melanoma

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

I am hoping to hear from June or Linda from the National Cancer Institute (NCI) regarding the clinical trials running on their campus in Bethesda, Maryland. Dr. A submitted my name and some information to them and told me to expect a call from sometime this week.

So far no phone call. I am trying not to worry about it or fixate on my phone. When my phone rings, I look for a 301 area code to show up. I am not assured a place in any clinical trial, but from what I understand I am a good candidate for participation based on my age, relative good health, and lack of complicating health issues.

One of the studies that I might be eligible for is called "Phase II Study Using Short-Term Cultured Anti-Tumor Autologous Lymphocytes Following a Non-Myeloablative Lymphocyte Depleting Chemotherapy Regimen in Metastatic Melanoma"

This study lists the following information:

Primary Eligibility:

• Measurable metastatic melanoma with at least 1 lesion resectable for tumor-infiltrating lymphocytes (TIL) generation
• Refractory to standard treatment, including high-dose IL-2
• Patients with 1 or more brain metastasis <> 1 cm must have been treated and stable for 3 months
• ≥ 18 years of age
• ECOG 0–1
• ANC > 1,000/mm3 without filgrastim (G-CSF) support
• WBC > 3,000/mm3
• Hemoglobin > 8.0 g/dL
• Platelet count > 100,000/mm3
• HIV, hepatitis B, and hepatitis C negative
• ALT/AST <>
• Creatinine ≤ 1.6 mg/dL
• Bilirubin ≤ 2 mg/dL (patients with Gilbert’s Syndrome <>
• Not pregnant or nursing; fertile patients must use effective contraception during and for 4 months after completion of study treatment
• Must have recovered from prior therapy
• No concurrent systemic steroid therapy
• No form of primary immunodeficiency
• No myocardial infarction, cardiac arrhythmias, or obstructive or restrictive pulmonary disease
• No active systemic infections, coagulation disorders, or other active major illnesses
• No severe hypersensitivity to any of the agents used in the study
• No history of coronary revascularization or ischemic symptoms

Treatment Plan:

• Patients receive cyclophosphamide IV over 1 hour on Days -7 and -6, fludarabine phosphate IV over 30 minutes on Days -5 to -1, and aldesleukin IV over 15 minutes every 8 hours on Days 0–4
• Patients undergo autologous tumor-infiltrating lymphocyte infusion over 30 minutes on Day 0
• Patients also receive filgrastim (G-CSF) subcutaneously on Days 1–4 until blood counts recover
• Patients with stable disease or who have achieved a partial response or recurrence after response may receive one retreatment course beginning approximately 8 weeks after the first infusion
• Blood is collected periodically during study for research studies.

Additional Information:

• This trial will be conducted at the NIH Clinical Center in Bethesda, MD. It is open to patients who meet the eligibility requirements, regardless of where they live in the United States.
• There is no charge for medical care received at NIH Clinical Center.
• PDQ (Physicians Data Query) - provides additional details about this study for health care providers.

Reading this protocol, I realize that this treatment does not seem like a pleasant experience. I don't know why I was thinking that it would be any more fun than the IL-2 treatment. This treatment may or may not be in my future, and I remind myself to live in the present. On Monday, if I have not heard back from anyone at NCI, I may initiate further communication.

Labels: clinical trial, Melanoma

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

JSP and I had breakfast and got ourselves ready, almost like an ordinary work day this morning, but rather than driving me to work, we drove to the hospital. The check in went quickly; before I knew it I was in my ICU room and putting on a hospital gown.

The IV team came to see me, and I experienced the thrill of having a pik like put in. (It is like a giant IV line that goes in my arm and leads directly to my heart. Once the X-ray team says the pic line is in the proper location, right next to my heart, the IL-2 can begin to flow.

So now I am in my hospital room waiting...

Labels: hospital, Melanoma, perspective

After our discussion with Dr. A. on Tuesday afternoon, JSP and I went home unsure what decisions to make.

As I thought, Dr. A. suggested that I should begin a second Interleukin 2 treatment. In fact he wanted me to start the treatment the next day! JSP and I listened to why he felt this was the best decision. Dr. A. thinks that my body may be reacting to the IL-2 treatment. He did not have any empirical evidence for this, but since he works with cancer day in and day out, I have to give his gut feeling some weight. We also discussed changing my pain medications so that I would hopefully spend less time in hallucinatory negative land. When we left I told him that I would not be able to make a decision right away, and that JSP and I would have to talk about this treatment option. Regardless, I would not start treatment the next day.

JSP drove us home and words and tears flowed out of me. My first IL-2 treatment was honestly the worst experience of my life; was I going to choose to voluntarily undergo the same treatment again? This seemed insane. The thought of going back to the hospital, having a pik line put back into my arm, and having that terribly strong immune system drug burning through my system again, ravaging my body left me no option other than to cry. JSP held may hand in the car as I mourned the next two weeks of my life.

Later in the evening I had sushi with my dear friend Connie. We discussed this turn of events and also some options for my care in the future.

When I returned home, I felt resigned that I would go through with this treatment a second time. I don't want to do this, but it may help to prolong my life. If I say no, I may be turning down a therapy that can help me to stay alive. I lived through the first treatment, I should be able to live through a second week of treatment.

It makes me sad, but I am choosing to go through the next treatment session, probably starting on Tuesday, April 22.

We have tickets to see our favorite comedian, Margaret Cho, on April 25. I will not be able to see her. That is a drag. I'll be busy surviving cancer that night.


For more information on my favorite cancer treatment see the page on Classic High Dose Interleukin 2 .

Labels: hospital, Melanoma

Tomorrow JSP and I go in and meet with Dr. A for the first time since my IL-2 treatment. I am bracing myself for Dr. A to suggest that I undergo another IL-2 treatment.

I will not be happy to comply with his request. I am at peace with the knowledge that I may not have that much more time on this earth. This makes the idea that I will trade a week of relative health and well being for a week in the hospital literally undergoing hell really very unappealing. Add in the unpleasant week of recovery time, and I am literally giving up two weeks of my precious life for the small possibility that the IL-2 treatments are actually going to do me any good.

Of course, having a doctor tell you that you should undergo a treatment can be very persuasive.
I don't know what decision I will make. The IL-2 treatment was honestly the worst thing I have ever lived through. I am happy that JSP will be at the consultation with me.

My recent complaints about this whole cancer thing are:

• I notice that climbing stairs makes me winded more often now than it used to.
• A tendon in the back of my right knee has been hurting sharply when I extend my leg or walk normally.

My recent joys include:

• Having my back scratched while I lay in bed.
• Enjoying a long hot bath.
• Enjoying dinner with my parents and my partner.
  

Labels: hospital, Melanoma, perspective

It is Tuesday and I went to work today.

This weekend JSP and I were in Denver and in the mountains near Denver. We went to visit my sister Julie, her husband Christian, and our wonderful network of friends that we have made through them. Most of the group skied in wonderful snow conditions, but due to my lack of strength and endurance, skiing was just not in the cards for me. In the evenings we played lots of games together: Pictionary, Taboo, Texas-Hold-Em, Triads, and Mafia were some of the group favorites.

Julie even brought her Champion Juicer so I was able to consume some fresh organic juice even so away from home.

The flight from Denver has my ears feeling weird; every time I swallow my left ear pops, and just breathing sounds strange in my head. Small potatoes I guess.

Just three weeks after finishing my first Interleukin-2 therapy, and I feel mostly better. The therapy was honestly the worst thing I have ever been through. Receiving a dose of IL-2 every eight hours around the clock for five days was very difficult to undergo. The drug is toxic, and the pain/sleep medication I was prescribed caused me very unpleasant hallucinations when I was awake. At the end of the week, I had gained 20 pounds of retained water, my immune system was terribly weak, and I had an infection of thrush in my mouth that made eating and talking very painful. I barely recognized myself when I looked in the mirror; my face looked like a puffed up marshmallow. I felt exhausted.

I am still underweight and bald, but there is a gleam in my eye again. I feel happy and I have my eyes open to the beauty of the world. I am looking for (and finding) joy in random places and simple moments.

One of the spiritual teachers of my young adulthood, Ram Dass, author of Be Here Now recently wrote a book on aging and death. I have been slowly reading it since I came across it at our local library. It is interesting to me how persons transition from a young sexy self image into a self image that is not young or sexy. At age 32 I am going through that phase a bit early perhaps, but there is no reasoning or bargaining with the mirror. Ram Dass has some useful thoughts on the matter. He tells his readers to embrace these changes and to wear your new self image with pride and dignity. One does not have to be youthful, sexy, or even healthy to hold a place of respect, or to be loved.

Labels: cold weather, friendship, juicing, Melanoma, winter

Greetings this Saturday morning,
At 9:oo AM in Minneapolis, the sun is shining but it is only 22 degrees outside. The snow melted to a large extent this week. We had 40 degree weather and bit of rain. It will be many weeks until the grass starts to green and flowers start to pop out of the ground.

Thankfully I do not have to wait that long. The tulips and crocus that I planted indoors just over a month ago have begun to bloom. Crocus are fast burners. There have been two white flowers and one purple flower, but sadly they open and within about two days they dry up and wither away. I hope to see a few more blooms before they are completely finished.

Tulips have more stamina. The blooms take a bit longer to develop and after a half a week being open, are still beautiful. Two purple and many red tulips bloom today.

Last week I had lasik eye corrective procedure done on my left eye. At this moment it has been four days since the procedure. I have to say that for the 5-10 minutes that it takes to do one eye, it was uncomfortable. Not miserable pain, but certainly uncomfortable. They take the eye and apply some suction to lift the contour of the eye. This feels...icky! Then a bit more manipulation and the eye flap is created. This is basically lifting up the lens to allow for the laser to do its thing. Then they turn on the laser, with its click click click noise. I could smell the burning of tissue. They put back down the flap and with some tiny brush like tool make sure it is in place on my eye. Then we were done; it was less than ten minutes.

I am required to put drops in my eye to help it heal for two weeks and also lubricating drops every hour. I see perfectly out of my left eye now and I will not have to wear glasses, which is pretty cool.

This morning, many of you are hearing the news that JayBee will be going into the hospital on Monday morning to start Interleukin-2 (IL-2) treatment. Cannot sugar coat this one, by all accounts it is going to be rough. Dr. A. suggests that JayBee's immune system is already working, as evident by the biopsy of lymph nodes that were recently removed (they were full of lymphocytes and necrotic melanoma cells). As hard as his immune system is working, it is unable to keep up with some of the cancer, thus the IL-2 is going to give his lymphocytes a super boost to enable them to work overtime.

JayBee links to IL-2 in the previous post. I also am familiar with this cytokine, since I work for a company that actually makes IL-2. The company I work for is in the business of making cytokines, which are growth factors in the body that tell cells what to do and when to do it. Our version of IL-2 is research grade and not meant for treating humans. I personally have not been involved with the purification of IL-2 at work. It is heartening to know that I am working with a company makes products that might be helping scientists develop treatments for the cancer my beloved parter is currently fighting.

Labels: cold weather, garden, Melanoma

On Monday of next week I will begin my first week long treatment of high dose Interleukin - 2. This procedure requires hospitalization for about seven days. You can read about interesting side effects if you follow the link to the drug above. It will not be an easy week, but I'll be a tough bird.

Dr. A. proscribed this regiment of treatment based on my March 5 CT Scan coupled with the pathology report from my February 12 skin tumor resections. According to Dr. A., the tumors in my lungs are growing at a rate that worry him; he hopes that I may be one of the lucky ones who will see my cancer react favorably to the "immune system storm" that this treatment regiment will cause in my body. I have to admit that although I am not looking forward to the discomfort of the side effects, I do look forward to seeing if this systemic storm can help me tend my body's garden.

I plan to bring my eeePC to the hospital with me. If I feel up to it I will write a bit about my experience. Since I am not into daytime television, I will have to try to make my own entertainment.

I have been continuing with the modified Gerson Therapy, and am considering learning more about the Gerson Clinic in Mexico. It might be interesting to spend a couple of weeks there, but I will have to update my passport if I am going to follow that route.

Labels: CT, hospital, juicing, Melanoma

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

I feel positively bursting at the seems today there is so much to write about. Should I share my oncologist appointment from yesterday, or the interesting information I received from a colleague dealing with cancer in her family? Should I write about the play "Third" that we saw at the Guthrie Theater last night, or about receiving an onslaught of handwritten cards from ten year old children in Iowa threatening me with damnation if I don't convert to Christianity. Hmmn, where to start?

My appointment with Dr. A. yesterday went really well. I went to the appointment by myself (JSP had a dentist appointment at the same time). Dr. A. made extra time for me at the end of his normally scheduled day. We discussed the interesting results of the biopsies that I had done on the lumps that were removed from my body on February 12. Dr. A. said that the biopsy report were somewhat inconclusive regarding what was gogin on, but that this much we know: of the fourteen lumps that were removed, thirteen were diseased lymph nodes that contained cancer cells. Some of these cancer cells in the lymph nodes showed signs of necrosis (cell death). This suggests that there is some immune system response to my cancer. The other lump (the largest lump) was a melanoma tumor.

Labels: Melanoma

Since being diagnosed with stage IV melanoma, I have experienced getting hives four times. The most recent bout of hives is just now fading from my body. I believe either my whole brain radiation treatments or my change in diet has activated a sun allergy in my body. I did some reading about photosensitivity, and it appears to act similar to other allergies.

I have gotten hives after being exposed to direct sunlight through windows four times in the last month. The hives generally last under an hour, but during the hives, skin itches and burns. I find it hard to focus on anything else while experiencing it. Still, my hives have been relatively minor compared to some I have read about.

While I have been very conscious of limiting my sun exposure in the past, I never experienced hives before. This new level of sensitivity to sunlight is probably connected to my cancer or the radiation treatments. The best way to deal with it is not to get direct sunlight. Knowing that I can't go out in the sun makes me feel a little bit like a vampire.

Watch out, cancer vampire is on the prowl.

Labels: Melanoma, radiation

Life without alcohol, salt, and refined starches and sugars is going surprisingly well. I miss drinking beer and the taste of salt, but organic produce is also very tasty and may well keep me living and breathing much longer than a typical American diet. I continue to consume a modified Gerson Therapy diet. Although I only average four glasses of juice a day, I feel like my body is responding to the greater amount of nutrition and reduced load of dietary toxins.

My body has been feeling very well, my appetite continues to grow and I love eating again. I have been eating more, both at home and at work, trying to add a few pounds if possible to my thinned frame. Drinking juices and organic peppermint or chamomile tea is part of my daily routine, along with my coffee treatments.

My body feels good, my spirits are high, and I am lucky to have friends and family who want to visit. I welcome visitors; I would almost say that I live for visitors. Come over, have some tea, play a game.

On Wednesday I have an appointment with Dr. A., my Oncologist. I hope he will be able to interpret the results of the biopsies that were done on the lumps removed from my body almost three weeks ago. I need him to help me understand what it means that of the fourteen lumps that were removed, only one was a melanoma tumor while the other thirteen were diseased lymph nodes containing cancer cells, some showing signs of necrosis (cell death) in some of the cancer cells.

I don't really understand this, I thought that all the lumps were going to be tumors. I am interested in what he will have to say about this.

Also meeting with Dr. A., I will get a good idea about when I should schedule the next round of MRI, and PT scans. I am still months away from being possibly eligible to enroll in experimental studies (due to the cancer they found and treated in my brain). If the my brain stabilizes and no new tumors are found for the next three months, then I could become a candidate for experimental trials.

JSP and I watched the film Venus last night. It was very poignant; basically about a man (Peter O'Toole) enjoying his final days and preparing to die. Despite my tears, I enjoyed the film and recommend it to those who enjoy international film.

Labels: beer, juicing, Melanoma

This morning was a chilly -14 degrees as we made our way to our respective work places. We hoped spring might appear, or even a few days above freezing. Mother Nature has other plans. March approaches and I certainly feel spring fever. Tulip and crocus bulbs that I planted two weeks ago grow quickly, each rises several inches out of the potting soil. I scanned the seed mailers and look forward to planting heirloom varieties of tomatoes, peas and other vegetables. I should order seeds soon, so I can start some flats growing sometime mid March.

In this cold weather we have been hunkering down in the house the last week or so. Our last weekend was quiet, the first weekend in a while with no visitors and no visits. I did my taxes, JayBee played with is new tiny computer (see previous post) and we watched a the movie Curse of the Golden Flower and several episodes of the Venture Brothers.

The week continues and our home remains quiet. Tomorrow JayBee goes back to the doctor to have the stitches removed from all the the incisions that were made the week before. I believe this weekend we will be more active. Sunday we have plans to attend our first roller derby. The RollerGirls League presents two matches, the Atomic Bombshells vs. the Rockits and the Dagger Dolls vs. the Garda Belts. I have heard about how fun it is to watch roller derby from our good friends Morgon Mae and Pat. I am excited to see it for myself.

We are looking forward to visiting JayBee's sister in Denver. The trip is scheduled for the first weekend in April. This is a continuation of an annual ski trip that has its origins years ago when many of our friends in Washington DC met in the Pennsylvanian Pokonos. Many of these same people have relocated to the Rockies, and the skiing has moved to better mountains. I have yet to ski during any of the last four years I have made the trip. Will this year be my first time? I am a scardy cat when it comes to skiing. I am overly worried I will blow out a knee or ankle (both of which are rather fragile). JayBee will likely try to convince me to give the mountain a try.

We were both excited that our neighbors to the east in Wisconsin supported Barack Obama. He has ten wins in a row and has captured our support over the last few months. Democrats have two very qualified candidates to choose from. Last night we watched Obama speak at a rally in Houston TX to over 20,000 cheering folks. It is refreshing to listen to him, compared to the bumbling speaches from Bush these last seven years. Clinton speaks well too in comparison. The people at the Obama rally were diverse in all respects; race, age, gender. McCain on the other hand is surrounded primarily by old white men. McCain clearly represents a completely different crowd. The election is still many months away, but I feel excited about electing a president (either Obama or Clinton) who I respect and can be proud of.

Labels: Bush, cold weather, Melanoma, perspective, politics, winter

Today I had fourteen tumors removed from my skin. My surgeon, Dr. E was very accommodating before my surgery. We went over the list of tumors that JSP and I had located. He found each one and marked it for excision. I had general anesthesia, and the surgery went very smoothly.

In the past when experiencing general anesthesia, I awakened after surgery to strange and uncontrollable fits of crying. Luckily, due to the use of an alternative anesthesia, this did not happen today. When I woke up I felt great, like I had had a good nap. Surgery lasted about ninety minutes.

The surgery was much less draining than I thought it would be. I am in no pain. I hope this continues to be the case once I get a good night sleep. I have pain medication should this change.

This procedure likely has no effect on the systemic cancer, but the uncomfortable tumors removed from my skin will no longer bother me.

JSP had to work today, so my parents took me to the hospital for my procedure. They stayed at our home for several hours afterward. My mother and JSP made me a delicious Gerson therapy approved soup with wild rice in it and a serving of delicious fresh ornage/kiwi juice. I have been drinking chamomile tea as well. It was wonderful that my parents could be with me today, but frustrating that JSP could not be with me as well.

As we are a gay couple, JSP is not eligible for the Family Medical Leave Act. This is one of the many rights extended to heterosexual couples that are denied to gay and lesbian couples. This is one concrete example of how the right wing "family values" platform makes my life more difficult.

Another result of right wing "family values" is that I am not allowed to have medical coverage thought JSP's work, even though we are domestic partners. Luckily, I have great insurance through the University of Minnesota. My colleagues there have been very supportive through this process, which I am eternally grateful for.

Labels: hospital, juicing, Melanoma, perspective, Republicans, surgery

In advance of JayBee surgery tomorrow to remove sub-dermal tumors, last night we took an inventory of his tumors. After a complete scan of his body, I noted at least 18 lumps in various locations in his body. Most were pea sized or smaller, but there are at least four that are marble sized. The larger lesions have caused him discomfort. One tumor on his back thigh he compared to sitting on a stone.

The process was sobering for me. I strive to be optimistic that we are doing the right things and that he will successfully fight these "weeds" into remission. Confronted with numbers, size and locations, I am reminded of the reality at hand.

Finished cataloging the tumors, we settled into our cozy nest, thankful we were sheltered from the bitter winter night. Looking into each others eyes we realized how lucky we are together and how thankful we are to have the strength and support of the other. We are hopeful to spend many many years together looking into each others eyes and feeling love.

I turned off the light, cuddled in close, and felt overwhelmed with emotion. A myriad of thoughts whirled in my head, and I softly cried myself to sleep.

Today is a bright but cold winter day. I am working and feeling well. I am a lucky man. Despite the number of tumors in my partner's body there are positive signs. At least one tumor originally present on JayBee's upper lip, appears to be gone. This one was very present in JayBee's mind. He said it stared back at him whenever he looked in the mirror. He theorizes that because he was more focused on it, his body fought it more successfully. The mind is a powerful force.

The weekend is a memory now, but I am thankful that friends and loved ones chose to spend time with us. Friday night, friends Michael, Adam, Jesse and Conrad arrived to play a entertaining game of Settlers of Catan with both of us. Saturday JayBee attended a soccer organizational meeting and later played Dungeons & Dragons with friends. Yesterday was a family day and we enjoyed the company of JayBee's parents, three sisters, a brother-in-law and two nephews. I made some juice for everyone. JayBee shared some home brewed beer and everyone enjoyed chatting near the fire in the fireplace.

Spring is creeping into our house. Last weekend I planted several tulip and crocus bulbs in several planters in the house. I noticed yesterday that a few sprouts poke through the soil. My hope is that sometime in a month or so, a variety of blooms will be greeting us each morning, inspiring more spring fever in both of us.

Labels: beer, cold weather, friendship, juicing, Melanoma, winter

I know that most people would like to shed a few pounds and may not be able to relate to someone who really needs to add pounds. I have not weighed myself since my Gamma Knife procedure, but I was down about 18 lbs from my normal weight on that day. With my hair having fallen out and my fat reserves all gone, I look a bit like an extra from Schindler's List.

I am consuming as much healthy organic fruit and vegetables, and the juices derived from them, that I can. My mother and some of my sisters have stopped over to help get me to eat more too. Food preparation can really become tiresome when your flavor palate is as limited as the Gerson Therapy seems to be. Two nights ago I resorted to adding in some not allowed external components like Afghani Pizza from Crescent Moon Bakery. (I hate linking to a Dara Moskowitz, her restaurant reviews are pretentious.)

Food is important, but it is amazing what happens when it is hard or impossible to eat. When my father was hospitalized a few years ago, he was unable to eat for a very long time. He aged ten years in several weeks. It shocked me to see his body change from the strapping muscular man he had always been to the thin frail man who emerged from the hospital. Radiation treatments caused me to lose my hair, extra weight, and has also aged me ten years in under a month. I have cancer, so what is a little change to my appearance? I didn't think it would be a big deal, but wow, do I look older and less attractive! The only saving grace is that JSP still finds me beautiful.

I am off to forage for food in the kitchen. My nausea of the last three weeks is mostly subsiding so I have some work to do to bring myself back up to my target weight.

Labels: juicing, Melanoma, radiation

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

"How are you feeling?" takes on a totally different tone than the same question held just over a month ago.

I feel good today.

I frequently feel like I am being anti-climactic when I say, "I'm feeling pretty good today." A much more interesting answer feels expected. Sometimes I wish I could answer something like, "My galactoid levels are really high today," or "About five minutes ago my sphincter was in pandemonium, but now I have it under control."

I feel quite good overall and this does not change much from day to day. I am fortunate that people want to know how I am doing, but I get slightly irritated by so much curiosity about my body. Want me to describe my low level nausea in detail? Are details regarding my difficulty following the Gerson therapy interesting? Do I have to admit that my hair is now starting to fall out in small clumps even if if you can't tell yet by looking at me?

When people ask me how I am feeling, the question feels poised to expose my difficulties. That in essence asks me to be vulnerable all the time. I prefer not to feel vulnerable all the time. Sometimes I feel like people are asking "Do you still have cancer?" and the answer to that will always be, "Yes." That can be a depressing question to answer repetitively.

Each glass of juice I manage to drink, each bowl of oatmeal I eat, each soccer game I play in, and even each coffee enema make me feel better. I choose to work and fight to be well and enjoy each day. My life is continuing. Cancer is part of my life now, but it is not the entirety of my life.

I finished the whole brain radiation treatment this past Wednesday, and in two days I undergo the Gamma Knife treatment to treat the largest tumors in my brain. This will be a whole day affair, and may take a day or so to recover from.

The tumors on the underside of my skin do not appear to be growing beyond the size they were a month ago although some tumors have appeared in new places. I don't have any pain. I am mostly asymptomatic of being in stage IV cancer. Beyond that, I don't know how my cancer is doing.

I feel good today.

Ask how my beer brewing is going. Ask if I have seen any good films lately. Ask who I support in the upcoming Minnesota Democratic Caucus (Barack Obama). Ask what my favorite food is on my new diet. Ask me to go out and enjoy the day with you. Questions like these focus on life continuing.

Labels: juicing, Melanoma, perspective, radiation

Although I had the day off of work due to Martin Luther King Day, I did have to go in for my daily radiation therapy. The photograph above was shot by my sister Julie. We wanted to document the fabulous experience that I have been having for the last two weeks of having my head bolted down to a board and zapped with massive quantities of radiation. The radiologists were very accommodating and seemed to understand perfectly why I would want to get a photo of this. One of the techs remarked, "Be sure to smile for the photo."

Our weekend went well, and I greatly appreciated the two day break from radiation. I only have two more treatments and then I am done with this therapy. The Gamma Knife is still to come, but at least it is just a single day procedure.

I wanted to go visit some friends in Gays Mills, Wisconsin this weekend, but I was just not feeling up to the road trip. The reports I read from those who made it there suggested that my friends that gathered there had a wonderful time. I am sad that I missed it.

My wonderfully devoted sister Julie kept Jason and me company for the last week and a half. Although I am sad to see her go home to Denver, I am excited for her to return to the arms of her husband. They will be flying off to have a fantastic vacation in sunny Belize... where I would like to be going too, since Minnesota is an icy hell. Julie played soccer with my team on Sunday since we were short players, and she did very well for not having played soccer for many years. She is in good cardiovascular shape and did herself proud, playing the entire first half of the game. We lost the game, but not due to her heroic efforts.

Honestly, Julie and I spent some time crying together this weekend too. I was amazed and delighted to see her blow her nose all over the shirt she was wearing. What a lady! It certainly didn't matter in the moment. In a well lived life there is time enough for smiles and for tears; I welcome living both of these times. (Next time though, I could do with less snot.)

I have been in good spirits this weekend, but I have not been closely following the Gerson diet. I like to blame it on my nausea from the radiation, but it is also that I am really desperate for food with flavor. Nausea makes drinking glass after glass of freshly squeezed vegetable juice unbearable, so I have been sticking to just having a few fruit juices. I am not consuming anywhere near the 13 glasses of juice a day that is my eventual target. I have been drinking tons of organic peppermint tea which seems to calm my stomach reliably.

I ate half of a not allowed vegetarian burrito today, and some not allowed Ahi Tuna. On Saturday, I ate a huge pile of not allowed sushi. Since my weight has fallen 8-10 lbs, I figure that it is more important to get nutritious calories than to follow the exact foods of the diet. Hopefully once my regiment of radiation is done I will be able to stomach the Gerson Therapy much closer.

Did I mention that am totally stoked to have only two more radiation sessions left? This does not include the day long Gamma Knife session that will take place next week. A metal halo screws into my head for that one. Woohoo!

Just because I look so pretty in it, here is another shot of me. Doesn't it look like an evil Spider man has been to visit me?

Labels: cold weather, juicing, Melanoma, radiation

I wish everyone heartfelt thanks for the outpouring of support and well wishes that many of you have sent out way over the last few weeks. Nothing that JayBee and I have experienced over the last seven and a half years could have prepared us for what awaits us in our future. Together we look for support and love from each other and are very grateful for the love and support from so many of our family members and friends.

This web site has been very useful in distributing the day to day information we obtain regarding the status of JayBee's health. I hope to contribute more, to express some of my thoughts and emotions to you all. It has been three weeks since the test results, this is my first post on the blog.

My mind has been all over the place in these three weeks. We have shared tears together and have pulled ourselves up and now talk about optimism, healing and faith in our body's ability to rid itself of this noxious weed. I have hope for a future with my partner. He is strong, vigorous and energetic. The news was stunning to hear because when you look at JayBee you only see the exterior...a model of fitness.

The changes are still ongoing in attempt to modify JayBee's diet to conform with the Gerson Therapy standards. This is certainly a challenge. Combined with the brain radiation treatment, the Gerson diet is not at all appetizing. It is difficult to stomach under perfect conditions, and I wish there were more foods that were available.

With my scientific background, I am somewhat skeptical of some of the foods that are available and some that are not permitted by the Gerson Therapy. I believe most of what is prescribed is healthy and sound scientifically, however I would like more detailed references as to why berries, for example, are forbidden food. Hot peppers, basil, and oregano are forbidden because they contain aromatic compounds, but no real scientific explanation is given to back up this claim. I know of several studies that suggest Capsaicin, a component of hot peppers, is healing and beneficial in cancer fighting. Thus it currently is a "do as best as we can" situation with trying to conform to the Gerson Therapy.

I hope to contribute more to our blog, especially if I have something I want to rant or rave about.

I can't fully express my thanks and gratitude for everyone sending positive energy our direction... it is being put to very good use.

Labels: juicing, Melanoma

Today I met with yet another Radiation Oncologist, Dr. Paul. Even though Dr. Paul was very clear, concise, and Caucasian, my take away message was something that sounded to my multicultural brain a bit more like a refrain from a heartfelt urban gangstalicious song:

Gotta let me sticka sticka Gamma Knife in yo Brain!

My cultural critique is that the Gamma Knife procedure should receive much more cultural coverage than it has received so far. Rappers and Britteny Spears should sing about it and rhapsodize about the fantastic wonder of modern medicine that it is.

Those in my reading audience that have experience with the Gamma Knife procedures might be familiar with the following drawings.

First, a kind doctor with a Phillips screwdriver screws a metal frame to your skull. Don't worry boys and girls, the screws won't hurt as they enter your skull.

Then you will be fed into a large robot that will enjoy delicately consuming your delicious head.

Finally, you become a Scientologist.


My whole brain radiation therapy is done on Wednesday, January 23, 2008 and a week later, January 30, 2008 I get the Gamma Knife therapy. The procedure lasts a single full day and they told me I probably want to stay home the following day.

Labels: Melanoma, radiation

Only six more radiation treatments to go.

I have not experienced any great pain from the whole brain radiation treatments, just sparklingly fresh breath.

No really.

Mild headaches can develop a few hours after treatment along with a low grade nausea. I can eat despite the nausea, but it makes eating less pleasant. I am happy that I am 40% done with this therapy and have not suffered worse symptoms.

Still struggling to drink enough freshly made juice, I take thermoses full of juice to work. I am learning that you can't use juicing bags that have been used for icky things (like green juices) and use them for yummy things (like fruit juices) and expect the yummy juices to remain yummy.

I have several dietary supplements that go along with the Gerson therapy. My favorite is pig pancreas extract, otherwise known as Pancreatin. I have about seven vitamin and herbal pills that I take daily now. I am learning as much as possible about each of these supplements. I hope that they help me to strengthen my immune system and break down tumors.

Labels: juicing, Melanoma, radiation

I woke up Sunday morning and felt well enough to play soccer. Julie and I got dressed and drove to my game at the University of Minnesota. Our team played hard, but something did not congeal right and we ended up losing 0-3. After the game we returned home and hosted some family and friends for freshly made juices and games.

Over the course of Sunday, I consumed nine glasses of juice, still four short of the magic thirteen that I am shooting for, but still more that I had ever consumed in a single day. JSP and Julie were troopers making me juice after juice after juice and each time cleaning up the kitchen afterward. I also had two coffee breaks.

Today at work, I got some strange hives around 11:00 AM. I am not sure if they were caused by sun beating down on me through the windows, bad carrots in my juice, or by something else, totally unknown. The hives went away in twenty minutes and the rest of my workday went fine.

I went to my third radiation treatment today at 1:30 PM and so far I have no side effects. The walk over to the hospital from work was really cold; we are locally at 9 degrees Fahrenheit. This is far colder than any place has the right to be.

The question for me remains, will I go completely bald before JSP does? Stay tuned for this and other exciting news as JayBee: Cancer Patient continues.

Labels: Melanoma, radiation

Today JSP and I spent the day making fresh organic vegetable and fruit juices and running errands with my sister Julie. I was hoping to be able to write about successfully drinking thirteen glasses of fresh juice today. Realistically however, I consumed probably only five or six 8 oz. glasses of juice. Partly I felt short of my goal because I felt some nausea today. I wanted to blame my nausea on the vegetables and juices, but the more I thought about it, the more I realized that this unpleasant feeling was probably a lingering effect from the radiation treatments of the last two days. I would probably have felt nausea today no matter what I was eating.

Julie had some wild adventures with our Norwalk juicer. "I think I am doing something wrong!" she called out from the kitchen as I heard the juicer whir. I went to the kitchen to see fruit and vegetable matter flying upwards out of the juicer and sticking to the kitchen ceiling and walls.

"No, that looks about right." Plant matter again violently sprayed the ceiling from the juicer. Working together on our juicing technique, we figured out how to minimize the projectile vegetation and maximize the flow of juice.

Yesterday and today I felt quite good. I felt less negative physical reactions from my second radiation treatment than from the first. I had less headache and less overall sick feeling. I enjoyed having the day off from radiation today.

In addition to the juicing, Julie and I went for a walk around Como Lake in St. Paul. We bundled up well and enjoyed walking and talking with each other in a scenic place that we each remembered spending lots of time in high school. We had tea at Ginko Coffeehouse to warm us back up before heading back home.

Today I was able to take stock of the requirements of the Gerson therapy and come to some conclusions regarding the time commitment needed to follow it. I also had my first coffee enema, but chances are you are not very interested in learning about that in any great detail. It functions as a sort of dialysis for your liver and bile ducts, reportedly helping your body to remove toxins from your blood. I'll just say that it went fine and was much easier than I'd expected.

I look forward to taking Julie with me to my soccer game tomorrow. I feel really good today and I hope that my body continues to be tolerant of my upcoming radiation treatments this week.

Labels: cold weather, juicing, Melanoma, radiation

This morning I met with a plastic surgeon. I was referred to Dr. E. by my oncologist (Dr. A.) on Wednesday when I asked if it would be possible to remove some of the tumors in my skin that have been bothering me.

The meeting went great. Dr. E. measured my tumors and told me that all of the tumors that are causing me pain or discomfort could be removed during a single surgical procedure. I asked about how the radiation treatment that I am currently on will impact this. He suggested that we wait to do surgery until after my whole brain radiation treatment is complete. We set up an appointment for the surgery for February 12, 2008. If I receive any steroids to combat swelling in my brain during radiation therapy, then this surgery will have to be pushed back 6-8 weeks.

I learned yesterday that my sister Julie, who lives in Denver, is here to visit. She decided that she wanted to spend some time with me, grabbed a reasonable priced ticket, and flew in this morning. She is going to walk me over to my radiation therapy today.

Today I am drinking a carrot-apple-beet juice. I am excited to follow the whole Gerson therapy regiment tomorrow, it will be the first day that I will be able to drink the thirteen glasses of juice and try out the other part of the therapy... more on that later.

Labels: juicing, Melanoma, radiation, surgery

My first whole brain radiation treatment went fine. I don't feel much different now from how I felt this morning. I am scouring my mind to find if I feel any different, and so far feel only a sense of increased awareness about my head. (Edit - An hour later I have a significant headache.)

The treatment went relatively fast, I was in and out in less than 15 minutes. I'll continue this radiation therapy daily at 1:30 PM weekdays for the next nine days.

On Wednesday of next week, at the halfway point through this therapy, I will meet with the doctor who is overseeing this treatment.

Labels: Melanoma, radiation

The appointment with my oncologist Dr. A. went fine yesterday. He told me that the brain radiation treatment that I start today is really the only thing I should be thinking about in the near future in regards to treatment. Most of the experimental studies that he had spoken to me about in our last appointment are no longer open to me since I have active metastases in my brain. However, three months after my brain radiation treatment, if the tumor activity stops and I am stable, I may again be eligible for some of the experimental treatments.

Hearing that my brain tumors made me ineligible for these experimental treatments was not the news I was hoping to hear, but in some ways it was helpful, because now I can put all my focus into going through this radiation treatment and on my new diet.

Yesterday my juicers arrived! JSP and I purchased two machines, a Champion juicer and the Cadillac of juicers, the Norwalk juicer. I am on my way to following the Gerson Therapy anti-cancer diet therapy which suggests consuming thirteen servings of eight ounces of freshly made organic juice over the course of your day. That is a glass of juice every hour all day every day.

It is time to drink some juice. Mmmn, I am drinking carrot apple juice made about two hours ago as I write this sentence. Ideally you drink the juice immediately upon making it, but few of us live in ideal worlds... in fact in an ideal world I would not have cancer at all.

I have an appointment tomorrow morning with a surgeon. I want to have some of my tumors removed because they are starting to make it uncomfortable to sleep. Additionally I have a small tumor on my upper lip that causes me distress. Dr. A. did not think there would be any drawbacks to having the troublesome tumors surgically removed. One possible concern is that being on radiation therapy might make me heal slower, so I may wait to have the surgeries until after the radiation is done.

My radiation treatment starts today at 2:00 PM. Sessions on this therapy only last 15 minutes. I'll walk to treatment from work, receive treatment, and then walk back to work. My hope is that I will feel OK after the treatment and be able to continue with my day as normal. I feel confident that I can continue to be productive through this process.

Wish me luck.

Labels: juicing, Melanoma, radiation

This afternoon I will be going to see my Oncologist Dr. A. to talk about treatment options for my systemic cancer. I am not sure what experimental options are out there, but I know there should be several promising studies that I may be eligible to participate in.

Today is my last pre-radiation day, so I enjoyed showering and combing my hair this morning. I don't know how much longer I will have my hair, as it will likely fall out from the whole brain radiation therapy that I start tomorrow. Between my new scars, lumps and the loss of my hair, I am certain to become less physically attractive quickly. Tonight after my soccer pick up game, I will ask JSP take some photos of me with my hair. Before and after photos can sometimes pack a punch. On some level it feels good to let slip the chains of vanity.

I'd also like to publicly brag about how well I played soccer the last two days. On Monday, my team tied 1-1 and I scored our only goal. Yesterday (Tuesday) our team won 9-5 and I scored two goals. Hoot Hoot! Playing soccer is one more wonderful thing to live for.

Labels: Melanoma, sport

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