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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

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

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

Today is the 4th of July, a free day for both of us. I am doing even better going on a week after I was released from the hospital. I continue to take antibiotics for the next week and eat a soft diet. Both Monday and Tuesday I tested the waters going back to work. The experience was decent, I paced myself and slowly started catching up on what got left behind the eight days I missed.

My memory of the time I was in pain and uncomfortable in the hospital is slowly fading. I am glad to not have those feelings in my stomach and frustrations in my mind. I have a story to finish about my hospital roommates.

I wrapped up my last posting telling you all of my first roommate, James. After two days of that anguish, I was thankfully transferred to another room. The person in my second room was much more tolerable, and was spending his last day in the hospital. No trouble I thought, perhaps at the end of the afternoon I would have a room to myself. Indeed, my second roommate was gone before I could even remember his name.

For a short period of perhaps three hours I had a room to myself. That lasted until my last roommate was admitted to the hospital. Let's call this fellow Bart. Bart came into the room in much the same condition I had, severe pain, abdominal cramps and waiting for the results of his CT scan. Bart looked uncomfortable, unable to relax or admit to the health situation he was in. You see, Bart turned out to be a hyper alpha-male type. He was resistant to the advice of the nurses and assistants. Bart would not even disrobe and put on the hospital gowns, fearing loosing some form of control.

I of course was disappointed with the thought of having another disruptive roommate. Bart's first hours in the room were spent making fuss, watching ultimate fighting on TV and bossing his wife around getting the room in order to his liking. Bart complained about not being able to eat or drink, similar to my situation, it was possible he could go into surgery at any time and therefore was forbidden to take eat or drink until his diagnosis was complete. Bart refused to obey the nurses orders and proceeded to drink and even offer me some of his candy. On top of that, Bart would leave the building every 30 minutes or so to satisfy his cigarette addition.

Bart's wife left quietly. Shortly afterwards, a friend or associate of his arrived to have a rather loud conversation regarding the last few days. It sounded like Bart was quite a troubled person. Only 40 years old, Bart has been through a lot. Through their conversation, I learned that Bart was a US Army Ranger, and had broken or hurt almost any part of his body you could point to. He suffers from severe Attention Deficit Disorder (ADD), his marriage is on the rocks, he recently lost his driving license and further was co-opted by the police to try to capture a wanted crack addict/dealer in the North Metro Area.

Bart's friend left, and he soon noticed that he had a roommate. He appeared friendly enough and started to tell me his stories directly, apparently without concern of the condition I was in. I was retold the stories I already heard with a more explicit detail of the problems in his marriage. His pain medication was working, and Bart became deeply annoyed with the concept of having to stay in the hospital. Bart mentioned to me that he would likely walk out of the hospital because he could not tolerate being cooped up.

Thankfully the nurse was aware of the stress Bart was beginning to cause me as well as the rest of the staff. The threat of him walking off or being unmanageable was enough to make them move him closer to the central nurses station on the floor. The move itself was uncomfortable as well, but I was very happy to have him out of my immediate surroundings. Bart remained in the hospital as long as me. He was still there when I left, last week Wednesday.

The story of both my roommates does not end quite yet. I soon found out that Bart was indeed moved closer to the nurses station, and in fact moved into the room I was first placed in...with James. I would never wish a bad situation on to anyone, but I thought it was somewhat poetic justice that both of my irritating roommates ended up sharing a room together.

As I was leaving the hospital last week, a "Code Blue" was declared. A patient had gone missing; Bart decided he could not handle his stay any longer and disappeared from the hospital ward without saying a word.

Labels: hospital

It's been two days since I left North Memorial Hospital and my recovery is going smoothly. I sleep better and my appetite gradually returns. My stamina is also improving. I might go to work on Monday to see how I feel. Eleven days of antibiotics remain to be taken, and I have already scheduled my follow up visit to the specialist for the end of July. In my free time I've thought more about my experience at the hospital.

The overall level of care given to me by the doctors, nurses and assistants was very high quality. My main complaint was a few roommates that I had to endure.

I arrived at the hospital last Thursday and after a CT scan, I was taken to a room I would share with an older gentleman. The stories I have about this man are all from his mouth, as he loudly and willingly told everyone in earshot. It is a sad story and perhaps indicative of how health care in America is oriented.

We will call him James. He was born in December of 1944 making him a young 62 years old. He was a prosecutor in the Minneapolis justice system until ten years ago when he had an accident and went into a coma for five months. Since then, James has been living opulently on his accumulated wealth or disability pay (or both), as he has not qualms about telling all his attendants how well traveled he is.

I do not believe James was healthy before his accident induced coma. The man must be over 300 lbs today and appears over 75 years old. His conversations disclosed he was taking at least twenty pills, not twenty total, but 20 different medications. James also has diabetes, with no feeling below his calves. He lost his skin on his abdomen which was replaced by grafts from his legs. He also has sleep apnea. This man snores louder than any human ever!

This man is clearly not a model of health. As I alluded to above, he is exactly the type of person the American health care system is designed for. No preventive measures needed, no exercise or moderation...only medication and treatment after the fact. I should have more sympathy for my fellow human being... but on top of this man's physical problems, he is also a complete asshole, so I don't have much sympathy for him.

One might expect if you are sharing a room where two people are trying to recover and heal, you would do your best to be considerate. Not James, he was loud, demanding, impatient and in every way a pig. His TV played loudly and remained on after he fell asleep. He made phone calls at all hours and talked loudly so everyone could hear his important conversation. His visitors were also loud and inconsiderate. In addition to his ample hospital meals, which he made short work of, he ordered several fast food meals to be delivered, including milk shakes, chili and lots of fried food.

Although I was trying my best to heal, James was in my way from the start. After a very uncomfortable first night in the hospital with him, I was comforted by the news he thought he would be released on Friday. It turned out that he broke his ankle sometime between Wednesday and Friday and could not walk; the doctor would not release him that day. I endured Friday with him. His piggishness and another night of freight train snoring were getting to me. Saturday was miserable for me, my pain increased, my comfort reached an all time low. My wonderful partner helped me to get my room changed and I was transferred out of this personal living hell of a room.

That moment was a turning point towards my recovery. Healing requires a calm and peaceful atmosphere. I understand that in our medical system it is not always possible to obtain a private room. This makes it more important to realize your own position in the world and not be so damn selfish. I left the hospital Wednesday afternoon and walked by my original room. James was still laying in his bed, nearly one full week after he had mistakenly predicted his release.

There will be some payback in this story as you will soon read in Part 2 of my hospital tale.

Labels: hospital

Thanks to everyone sending thoughts of healing and well wishes. I am happy to say that I am no longer in the hospital. At about 4 PM today, I was released since the major problems associated with my illness subsided. I kept my temperature in a safe range (98.6-99.3 F) for the last 24 hours, my food stayed down, and I am digesting again. For the next two weeks I will be taking two antibiotics and consuming a low impact diet to ensure my inner workings heal well.

Special love and thanks goes out to my wonderful partner, JB, through all of this. My experience was more comfortable because of his love and support. I don't want him to go through anything similar to my ordeal, but if he ever does, I hope I do as well with him as he did with me.

Diverticulitis is not something I would wish on anyone. It was very painful. It started casually enough with simple lower abdominalal cramps, brought on by what I thought was simply ingestion of steak (which I eat infrequently). The pain intensified, even thought I went to work on the next day. I did leave a few hours early noting a feverish feeling on top of the cramping feeling. Wednesday and Thursday were more of the same, with long periods of intense pain. Keep in mind, this is the longest lasting intense pain that I can ever remember experiencing.

Thursday I resigned to the fact this was not something I would be able to take care of on my own. JB took me to a hospital and the process of my healing started. After diagnosis, the next five days I consumed no food nor fluids besides the saline and antibiotics that the IV needle pumped into my arm. Monday things finally were looking up as the intensity of my pain reduced in intensity, and the amount of pain medication I was taking also went down. I drank my first fluids and ate then my first solids shortly later. The fever went away too.

I enjoy the sounds and smells of life outside of the hospital. There as several stories I have to tell of my experience in the hospital, but for now I will need to take care of myself and not overburden my system as I recover. I am checking my e-mail and reading postal mail.

Thanks again everyone for your healing thoughts.

Labels: hospital

JSP called me from the hospital this morning in very a chipper mood. He was able to eat some soft food this morning and was not experiencing much pain. He was sitting in the hospital atrium enjoying being out of bed. His digestive system seems to be calming down and his Diverticulitis (inflamed acute Diverticulosis) seems to be responding to the antibiotics and rest.

He hopes that the doctors will begin considering the possibility of discharging him in the next few days. I hope that this forward momentum continues and that it is not a matter of "2 steps forward, 1 step back."

Thanks to everyone for the well wishes and positive energy sent our way.

Labels: hospital

JSP started experiencing abdominal pain on Monday of last week. We thought it was due to the fact that he ate steak the night before, which is a substantial change from his normal pseudo-vegetarian diet. After a few days, when the pain did not subside, he decided that he should go in to the hospital. That was this past Thursday.

Since he was admitted to the emergency room on Thursday afternoon, not much has changed. He is still experiencing pain in his belly (although the pain medicine mitigates this) and his fever comes and goes even though he is on a regiment of IV antibiotics. Today he has nausea, which is new and things do not appear to be improving. He has not eaten since Thursday.

It is a disturbing time for the both of us, we are uncertain about the short term and concerned about the long term implications of this.

The doctors diagnosed his medical issue as Diverticulosis (links to really graphic and ishy Wikipedia article if you want to know more) which is about the least glamorous disease ever. The hospital staff have been excellent, but none the less, JSP and I are really hoping he can come home soon. The possibility of surgery looms large, and we are continuing with a "wait and see" policy.

Labels: hospital