Both of Us .org

JSP and I have enjoyed the past few weeks. Work has been going well for both of us and we spent our last two weekends out of town. Last weekend we went to the beautiful town of Bayfield, Wisconsin, and went sailing with our friends Rod and Georgianne on Lake Superior. Sailing in and out of the apostle islands in a luxurious sailing vessel was fantastic. JSP and I are now big fans of sailboats.

This weekend we went to a beautiful piece of land outside of Finlayson, Minnesota. Although the insects were not so friendly, everyone else was. We enjoyed nature walks, a bonfire, games of boccie ball and Catan, yummy food and and good times with Cosmic Monkey, Emma, and a whole gang of fun, friendly people. I especially enjoyed seeing the Digging In garden that Cosmic Monkey and Emma started been writing about. A special thanks to Hilty clan for their hospitality.

Elsewhere, from their South Minneapolis home, my friends Patrick and Morgon Mae have begun documenting their participation in Community Supported Agriculture (CSA) on their blog CSAte. The photos they share illustrate the bounty of tasty food they write about. CSA's are a great way of supporting local farmers while receiving copious amounts of fantastic food.

On a completely unrelated note, my sister published a book review on a Web site called Donne Tempo. Her review, Love the One You're With by Emily Giffin. is compelling and well written. If you are looking for a new book to read, check out Julie's review.

Labels: friends, garden, Minnesota

The world's best and safest web browser, Firefox, releases a buffed up new version today.

The Firefox team is trying to set a Guinness Book world record for the most people to download software in a single day. You can help them set this record by clicking the Download Day badge.

Update: The promoters of Download Day claim that over 8 million people downloaded their software on one day.

Labels: computers

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

I received the following email message last night from my doctor.

Dear John,

I had a call today from the National Cancer Institute.

Right now, they believe that you are not a candidate for the gene transfer study.

They are concerned that you had too many brain metastases when you started treatment.

I think that this decision is an error, since the brain abnormalities seen on your MRI now represent treated areas, scars, and there have been no new areas of abnormality.

I have asked them to review this decision.

I will keep you posted on this, and other options.

Dr. A.

This means I don't have to pack my bag and fly off to Maryland.

I feel a certain level of disappointment about this development, but I am not disheartened

Having Pascal and Henzz here from Amsterdam has been fantastic. They have been enjoying themselves having made trips to the Mall of America, Valley Fair, 7 Sushi, the Stone Arch Bridge, The Walker Art Museum's sculpture gallery, Grand Old Day, and other unique Twin Cities locations and events. I am sad to think about their departure later this week.

I will celebrate my thirty-third birthday on Friday the 13th of this month, the same day of the week I was born on lo those many years ago. The early the following day we will travel with our friends Rod, Georgianne, and Vanessa to Bayfield, WI to begin a two day sailing trip on Lake Superior.

Happiness is having wonderful things to look forward to.

Labels: clinical trial, friends

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

Continuing on the theme of friends, food, and fun, last night we had our married friends Barbara and Phil over for a dinner of sashimi and negori. I had hoped to photograph our endeavors because it was the most raw fish I have ever purchased, prepared and served at a single time. We bought five different sashimi quality fish: ahi tuna, orange fatty marlin, bluenose, Scottish Atlantic salmon, and halibut totalling about three and a half pounds of rawly delicious fish. Thankfully our dinner companions had appetitetes as large of those of JSP and me. Between the four of us, we methodically and with much pleasure made all those pounds of fish disappear. Our table discussions ranged from birding and gardening to healthcare and politics. The night flew by in a barrage of words and flavors and before we knew it, it was time for our guests to leave. They walked to their car under the light of the full moon.

I treasure the friendship of so many wonderful people. I feel fortunate to have the number and quality of people touching my life and expressing their wishes for me to continue surviving my cancer.

Labels: food, friends

On Friday evening I saw an old friend that I grew up with that I have not laid eyes on for perhaps 15 years. Perry, a neighbor from my childhood had heard about my cancer through his grapevine and had tracked me down. He came over with a bundle of organic produce and we talked about the paths our respective lives, and the lives of our family members and common friends had taken in the last fifteen or so years.

A few of hours after Perry went home, another friend, Keenan, stopped in to crash at our home, having just made the journey from Madison, Wisconsin. He was being a good son for the weekend and would help his father repair some broken fencing the following day.

Saturday morning JSP planted at least 50 seedling plants in our back garden. I was amazed to walk out in the back garden to see the black soil that seemed almost lifeless the day before transformed into a garden full of green plants. The garden is infused with new vegetable life.

Artists in Northeast Minneapolis have a yearly open door weekend called Art-A-Whirl each spring, and this weekend was Art-A-Whirl. On Saturday JSP, Pat Morgon Mae, Marcos, Jaime, Connie and and I toured the Northrup King Building which houses about 150 artists in four floors of studio spaces. It was a fun afternoon.

We started, without Jaime and Connie, at our home and then went to lunch at The Vegetarian, an unassuming Indian restaurant with a fantastic buffet in Columbia Heights. The food was delicious and it was hard to choose when to stop eating. Palak paneer was on the buffet and I indulged in the flavors that I crave. I was thrilled to see a completely vegetarian buffet where I can choose from anything on the buffet instead of only one or two vegetarian options.

Eventually we connected with both Connie and Jaime and meandered through Art-A-Whirl's largest venue. I picked up a number a cards from artists and got an idea about what artists I might be interested in buying from in the future.

After trekking around the artist studios for several hours we re "arted out." We went to the Holy Land for dinner. I got a plate of tabouli and a plate of humus that went wonderfully with pita bread. My companions chose a variety of food and everyone seemed very satisfied with their choices.

That night I played a thoughtful game of Go with my friend Keenan. One big error on his part late in the game allowed me to take one of his groups and win the game. I love playing with Keenan because he plays Go frequently and improves between each game that I play with him.

On Sunday morning Keenan, Pat and I had breakfast at the Seward Cafe which is always nutritious, organic and delicious. Sometimes I marvel at the number of choices that I have in the Minneapolis restaurant scene in terms of being able to get organic vegetarian food in so many places. I do not take this gift for granted and it reminds me why, despite the cold, that I love Minneapolis. I decided on organic huevos rancheros and organic freshly made yogurt. I was not disappointed as both were magically delicious. My companions again were very pleased with their food choices, and the thing that stands out in my mind is the cold pressed coffee, steamed to perfection, that they enjoyed during our breakfast.

After breakfast and saying goodbye to my friends, JSP and I began our journey to Grantsburg, Wisconsin where our friend Vanessa was graduating from high school. Georgianne, Vanessa's mother, had invited us to come with her to the graduation ceremony and to enjoy the graduation party that followed at their home. After the ceremony, we were treated to beautiful weather delicious filled cupcakes and delicately layered cakes that tempted me to eat them despite the fact that they are not allowed contained lots of refined white sugar and refined white flour. Georgianne and Vanessa showed that they could be fantastic hostesses as it seemed the whole village of Grantsburg filtered through their home over the course of the afternoon.

During our drive back to Minneapolis, we noticed that the silver moon was almost full. The moon is completely full tonight.

Needless to say, JSP and I slept deeply last night.

Labels: art-a-whirl, arts, entertainment, food, friends, friendship, garden, Northeast Minneapolis

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