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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

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

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

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

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