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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

JayBee was released from the hospital around 2:30 this afternoon and now is resting at home. It was the best of scenarios to have him released right after his last treatment cycle, instead of putting him into a regular room and waiting another day or two like they did the last time. Now we got to get him eating so his vigor returns.

There is not too much more to say about the 2nd round of IL-2. We are glad it is completed and now will wait a few weeks to meet up with Dr. A. At that point more tests will be scheduled, including MRI, CT and PET scans. These will hopefully tell us what effect the IL-2 treatment has had with JayBee.

Thanks again everyone for thoughts, cards, visits and support.

JayBee completed all 14 of the IL-2 treatments during this second round, one more than the first time. The floor doctor just came in and checked JayBee out, giving us indication that he could possibly leave the hospital today...which is wonderful news. The last time he was here, they moved him to a dark unpleasant room out of the ICU to recover for two days. The second day was nearly impossible to deal with since JayBee so badly wanted to be done and at home. This time if we can avoid an extra day at the hospital, I believe his recovery will start that much earlier. Who wants to stay in the hospital anyhow.

They have already disconnected the IV feeds to the PIC in JayBee's arm. The nurse is in the room now and taking off the monitors and asking to take out the PIC. JayBee will soon be free of that and is happy His temperature is normal and vitals also returning to normal. We are also packing up the stuff here; food, clothes, computer. We got a very beautiful orchid from our friends Morgon Mae, Jamie, Patrick and Marcos. We have to be careful to protect it from the unusually chilly weather we have this weekend. It snowed about an inch yesterday...after having a couple days in the 70's earlier in the week.

JayBee will be home from work this week, recovering. His sister Julie from Denver will be here until Tuesday. Wednesday our close friend from Holland, Cees will arrive for 5 days. He will be a welcome, pleasant and helpful friend in our household.

Several weeks will pass until we know more about how successful these IL-2 treatments are. The doctor mention after two rounds of treatments, typically they will use MRI, CT and PET scans to evaluate the status of the cancer. JayBee does not like any of these tests either, however it will give us definitive answers to the question if these harsh treatments are worthwhile in weeding out the cancer.

Labels: friends, hospital, recovery

Saturday morning and JayBee is awake and a bit restless. He seems to be feeling relatively well. Right now as I look at him the main issues are itching and bed irritation. The first several days JayBee was feeling well enough to take a few walks around the hospital (and even outside since it was in the 70s when he arrived). The last two days have been worse and he has been in the bed the whole time. It shows as he struggles to find a comfortable position in the bed.

Twelve IL-2 doses of the 14 total have been administered. That means one more at 1PM and the final dose at 9PM. Then he starts to recover again. Hopefully we can get him out of the hospital tomorrow, since recovery is accelerated in a cosey location like home.

The mouth irritation has returned. JayBee is generally not talking much because it hurts just to open his mouth much. They have given him just about everything to try to prevent or attenuate the onset, will minimal results. Perhaps it is not as severe as the first time, but we will not be certain until the IL-2 treatment is done and he gets home and wants to start to eat normally.

A reminder for anyone considering a visit, with all of the symptoms JayBee is experiencing now, he is likely to be mostly unresponsive. His sister Julie and I are here now just to be there if he needs something, otherwise it has been a quiet morning thus far. JayBee communicated to me he is happy to see people, and even happier if they are short visits. He knows you are wishing positive thoughts to him and appreciates that very much.

Labels: family, friendship, hospital

The end of the week has arrived. I am certainly happy to have the next two days off of work so as to focus more on the task of getting JayBee out of the hospital. This evening JayBee is resting, and has the company of quite a few people. Several sisters have spent time here today as well as his folks. The room is pretty full right now as we try to comfort JayBee through these last few days of treatment.

Generally JayBee's condition worsens towards the of the treatment cycle. He is more fatigued and his vitals are more perturbed. A number of people have called or written regarding visiting JayBee. He feels pretty uncomfortable generally, so if anyone wants to visit please be prepared for a relatively unresponsive JayBee. He does know of the thoughts and wishes being shared for him and appreciates that. I will try my best to get to the messages and phone calls regarding the status of JayBee.

Tonight Margaret Cho performs at the Orpheum in downtown Minneapolis. I had purchased tickets hoping that both of us could see her. Sadly JayBee is here in the hospital again. In his place I am taking his little sister Julie. We leave shortly, trying not to feel guilty enjoying this pleasure while JayBee wallows through the IL-2 doses. Julie and some of her friends came to Philadelphia to see Margaret Cho when JayBee and I were still living there. And JayBee and I saw her at Northrop Auditorium on the U of MN campus about a year ago. Looking forward to the show.

Thanks again for all the calls and e-mails of support as they are being related to JayBee daily.


UPDATE:
Julie and I had a wonderful time at the Margaret Cho concert. It is really fun to see the crowd, thousands of gay, lesbians and fag hags. Margaret was on target as usual, with vulgarity, pop culture and activism...all of which was hilarious. We even saw a bunch of the Orange Crush soccer players who all sent their wishes JayBee's way.

Labels: arts, entertainment, hospital

Thursday evening is currently being spent in a relative calm. JayBee has completed 7 of the possible 14 IL-2 doses this second round of treatment. It appears the changes that were made in the drugs used to mediate some of the side effect have been worthwhile. There is still uncomfort, itching, cold/hot streaks, fevers etc. however much improved over the first time.

It has been quite busy and I wish I had more time to write down about what is going on day to day. Since the hospital food is basically not good for a vegetarian, I and JayBee's family have been cooking and bringing in meals during the day. I have woke up early to make breakfast and bring it in...sit at the hospital an hour or two then rush to work. After work I rush home and cook dinner to bring in the evening. This time, JayBee has been more awake and receptive to interaction, thus I have not been able to use that down time to blog.

The basic news is that JayBee is half way done and doing marginally better dealing with the side effects. Hopefully the situation will remain the same. Last time half way through, re-reading the blog I notice that the situation was certainly worse.

Otherwise we are happy spring is here and warm weather is pleasant to enjoy

Labels: hospital

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

We are back in Minneapolis and I have photos from our trip. The trip was really nice, relaxing and deserved. I enjoyed catching up with our wonderful group of friends. This was the fourth time JayBee and I have joined in on their Winter ski trip. I look forward to many more in the future.

My one bit of adventure included a vigorous snow shoe hike up one of the local mountain trails. Last year I also hiked in snow shoes, but the trail was flat and fairly uninteresting. This year, we found a trail that went up the side of one of the peaks in the Frisco area. It was very nice since it was good exercise and there were many outlooks to take in some stunning scenery. So below are a few of those pictures for your enjoyment.


Here are a few more images from the trip:
The view out our front window of our cabin.


Some pictures taken along HWY 70 on our way to the cabin.

And just before we returned to Minneapolis, Julie and Christian took us out for dinner at a Japanese restaurant named Domo. We had a variation on typical sushi, called Wankosushi. Instead of having the sushi fish with wasabi and soy sauce, here we were presented the fish with a variety of toppings. I believe this type of sushi represents rural Japanese tastes more than the Tokyo version of sushi we are more familiar with.

Labels: cold weather, friendship, winter

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