Alive and living the fallout of IL-2

I just read JSP's account of what happened since my last post on Thursday, which was two days into my treatment. Reading his play-by-play of my hospitalization, I got very choked up, his honest uncertainty about my condition as it worsened day after day. My mind blocks out some unpleasant memories. Having been home from the hospital for a few days, reading now, I am chilled with memories of my recent confusion and pain.

I also had selectively forgotten that the unfortunate fallout from the high dose Interleukin-2 does not end when you come home. For the first days at home, my mouth and body were so ravaged that eating was mostly out of the question. The thrush-like infection in my mouth was a constant pain on top of a mouth that would not produce any saliva. I drank lots of water, but found it hard to control my digestive system and had several frustrating and messy experiences in the bathroom.

My skin stung and hurt, then dried up, and has been slowly and conspicuously flaking off of every surface of my body. Strange welt/acne wounds that are not really wounds can be found all over my body. I feel like a freak when I look in the mirror, watching the skin around my eyelashes pull away from my eyelids.

Yes, it has been a fairytale of fun. Mostly I have been sleeping, trying to heal my body and bring clarity back to a drug addled mind.

It is amazing the comfort that a mother can still give to her 33 year old son. My mother spoon fed me a small dish of organic vanilla yogurt on Sunday, which was the fist food I had consumed in days. On Monday, I managed to eat a banana despite the piercing pain in my mouth, and my parents both came for a visit Monday afternoon. It was good to see my father who is recovering from his own hospitalization, hernia surgery.

JSP has been a rock to me. JSP's actions remind me everyday that choosing to spend my life with him has been the best decision of my life.

My mouth is slowly improving, although not enough to eat sushi which JSP and I prepared for six persons last night. I was disheartened when after working on preparing the sushi for four hours, I was faced with the reality that my mouth was not up for the challenge. I ate left over palak paneer as JSP and our tablemates gobbled up so much delicious and beautifully prepared raw fish.

I am really happy to have Tom, Jennifer, and Keenan staying with us at the house.

Before I forget, about coughing up a tumor... the biopsy clearly indicated that the 2 cm tissue was indeed a metastatic melanoma tumor. I coughed it up on my own from deep inside my lung. How many people do you know that can conclusively say that they have done that?

Counting me, just one.

Thanks for reading about these difficult times, and following my trail. I am thankful for all my family and friends, even for those friends on the interweb that I may have never met in person.

I drank fresh squeezed organic juice this morning for the first time in a week, and ate some yogurt. The sun is shining outside, and I am able to breath the cooling autumn air. Life is good.

I'll be tending the garden.

Released

JB has returned home this evening. The thought of staying at the hospital was unbearable for him and with the help of his understanding nurse Anne, JB signed the AMA form. He was disconnected from the monitoring devises and had the PIC line removed. A wheelchair helped him to the car and we drove back with his mom following behind. Wearily he managed up the stairs and is now in bed.

The advise we have is to makes sure JB drinks as much water as possible to flush out his system and to get his kidneys and liver back to normal functioning. Then there is the rest and recovery stage which is facilitated by being at home.

It was a quick release and hopefully the comfort of home will enable a return to normal. Tomorrow will likely be a day mostly in bed sleeping if all goes well. Thankfully it is Sunday and we have the kind help of house guests Tom and Keenan to lend out a helping hand if JB needs one. Thanks for everyone that visited JB in the hospital the last 5 days.

Treatments complete at 12

It is Saturday evening, going on 6:30. Dr. A examined JB over an hour ago and together we came to an agreement to stop treatment at 12 doses. His last dose was around 9AM this morning and this afternoon his vitals were not good for administering a 13th dose. Liver and kidney functions are impaired, delusions more frequent, diarrhea too. JB is tossing, turning and itching in between sleeping. Dr. A suggested 2-3 days observation and supplement with fluids/electrolytes before release, which was not greeted with enthusiasm by JB. JB petitioned to be released tonight, and Dr. A was against that. I was asked my opinion and I believe that less than eight hours after an IL-2 does was too soon to go home. I worry about the vitals that I cannot monitor if he is at home, if he needs magnesium or phosphate to balance out his system. I want to take him home tomorrow morning. JB was very upset with my opinion, feeling he will heal faster at home in a comfortable environment.

JB's mother and sister Diane have arrived and we sit together in the dim room watching over him. It is a comfort to have his family here, especially during this difficult period when JB wants to be home. I want him home too, want him to recover. Hopefully tomorrow his spirits will rebound as he is disconnected from the machines and makes it home.

Last day of treatments

Saturday morning arrives with JB getting dose #12 of IL-2. JB had a difficult evening with the abdominal pain, but thankfully that pain has subsided. The dose of morphine knocked him out, and has led to some mild dementia. Several times last night and this morning JB has asked where he was and wanted to know what was happening. Otherwise he sleeps somewhat fitfully now.

The ultrasound tech scanned JB last night to find out anything about the cause of JB's pain, but no results have arrived. JB has not mentioned any pain this morning. JB remains itchy, a result of the swelling and expanding skin. I wish JB was able to eat and drink more. At this stage of the treatment, he is so out of it making food unappealing. I hope after the last treatment he recovers quickly and can leave the hospital.

In pain tonight

JB is having a crummy afternoon and evening. This morning when I was here, the situation was fine. But returning to the hospital after work I find JB in pain. His parents and sister Lynda were here and mentioned that the pain started mid-afternoon. It appears to be worsening, going from JB's pain perception level 4 to 6 now. Not clear what the pain results from, it is in his upper abdomen, maybe kidneys. He describes it going through to his back. The nurse just administered morphine and Adivan. The doctor was called and an ultrasound is hopefully going to be given this evening. This will tell if there are any obstructions. Otherwise there does not seem to be a quick answer or cure to the pain.

The morphine does kick in quickly. JB is really out of it now. The nurse came in to check vitals and JB wanted to know why she did not give him his medications. He fades in and out of sleep/conscientiousness.

The next does of IL-2 will not be given unless JB urinates. To help him they are pumping in fluids. Next dose is number 11.

Half way finished with IL-2

The sun has set, and JB's hospital room dims this evening. JB is holding his own through this third IL-2 treatment regiment. He is now half way done with the fourteen doses to be given. Most of the discomfort is a result of terrible itchiness all over his body. I have been doing my best to scratch some of the places hard to reach. He has particularly enjoyed the extended scratching of his back.

JB ate some yogurt and granola, brushed his teeth and now sucks on a medicated lozenge in hopes of preventing the mouth issue he dealt with the last two times he was hospitalized. The rest of the evening hopefully will be uneventful. The eighth dose of IL-2 will be given around midnight.

I awoke this morning to an unusual sound. Around 5:00 AM I heard a helicopter buzzing nearby and then the sound of many car horns in the distance. As some of you might know, the new I-35W bridge over the Mississippi opened this morning. It turned out that the helicopter was hoovering in air to monitor the opening. The car horns were from all the cars making their first passage over the bridge. The noise of traffic on the freeway increased with the bridge opening. I had not realized how quiet our neighborhood had become with reduced traffic on the road this past year. We will soon get used to the sounds we heard when we first moved into our home.

Almost halfway through the treatment.

Slightly confused by the medicines I am taking, I recline in my hospital bed. A humidifier, brought from home blows fog into the air beside me. So far I have completed six of the fourteen treatments that I chose to under go.

The dreaded thrush is again taking residency in my mouth.

I am hanging in there.

Checked in at the hospital again

I checked in at the hospital this morning at about 9:00 AM. Two hours later and I am all settled in my hospital bed. My pik line is in, running from my right bicep directly to my heart. The nurses have been great so far.

The tumor that I coughed up on Wednesday sets in front of me, next to my computer, waiting to be picked up by laboratory staff.

I look forward to an uneventful week at the hospital, I am going to try to think of it as a full service spa.

JSP has not been feeling well the last few days. We think he may have food poisoned himself on Saturday night when he made a delicious Palak Paneer for our houseful of guests. He admitted eating some unooked paneer (Indian style cheese) before it had been cooked. He says it could also have been from eating something else.

I am in good spirits on my first day in the hospital. My third regiment of high dose Interlukin-2 will hopefully strengthen and improve my body's immune response to my cancer.

Hey, Look Over There!

I have not written about politics recently. If you scroll through the archives of this web site you'll notice frequent comments on current events and politics. I attribute my recent lack of political commentary to the summer effect of not blogging about anything. The United States is less than two months away from selecting its next president. The race is heating up and more attention is paid to what candidates are saying (or not saying).

JB and I support Barack Obama. We believe his message and support his position on the issues. I spend time reading news, sifting through opinion and analysis, watching political commercials and listening to the candidates. I absorb enough information to make informed comment.

John McCain is deceptive and dishonorable. Evidence of this is found in his words in interviews and in his commercials. The words of his running mate, Sarah Palin also feature numerous lies. Here are a few.

McCain claims in one commercial that Barack Obama voted for a bill that would teach Kindergartners about sex...before they are taught to read. This is false, as described by the non-partisan FactCheck.Org.

Sarah Palin lied about her rejection of the "Bridge to Nowhere"and earmark spending. John McCain repeated those lies on "the View".

In commercials and stump speeches, McCain/Palin construct lies about how Obama will raise everyone's taxes, that he refuses to drill oil offshore, and that he will negotiate with terrorists.

The campaign being run by McCain/Palin is clearly in the mold of those run by Karl Rove. Deception, half truths, distractions and controlling the media spin daily are keys to how to successfully manipulate the average voter. Did Barack Obama call Sarah Palin a "pig wearing lipstick"? Clearly not, but that is not how the McCain/Palin camp spun it to the media, and for many days all we heard about was how Obama is sexist.

I fear this is only the tip of the iceberg when it comes to the smears, distortions and distractions we will be dealing with for the next 54 days. I fume at times thinking that most Americans will make a choice for president by assimilating the garbage out there while basically ignoring candidates policy positions.

My hope is that a fair number of us will be able to wade through the mess to see what McCain/Palin and Obama/Biden plan for America as its next leaders. Here are some key issues before us to consider.

The Economy: McCain/Palin will continue the Bush policies of tax reductions for the rich and corporate world (and his economic advisor called us a nation of whiners because we do not believe the economy is in good shape). Obama/Biden want to reduce taxes for anyone making less than $250,000 while asking those more fortunate to pay an increased fair share.

The Choice: McCain/Palin want to strike down Roe v. Wade, taking reproductive choice away from women. Obama/Biden will preserve a woman's right to choose.

Energy: McCain/Palin wish to continue support for fossil fuel exploitation with limited exploration of alternative fuels. Obama/Biden hold the view that fossil fuels are not the answer to all of America's energy needs and seek extensive alternative energy exploration.

The Environment: McCain/Palin believe climate change is not influenced by man and believe the market can take care of the environment. Obama/Biden wish to partner with the nations of the planet in attempt to curb pollution, greenhouse emissions and improve stewardship of the Earth.

Education: McCain/Palin will pursue reforms that address the "underlying cultural problems in our education system." This is a coded phrase for lack of religion in school. They seek to have creationism taught in school, further blurring the line between religion and state. Obama/Biden have detailed reform based policies for all levels of education, pre-school through college.

These are just a few of the many issues facing America. I seriously request anyone interested in the path our nation is going to take to read the platforms/policies and proposals of both sides. Take note of the details and examples given. In writing this posting I have re familiarized myself with policy issues of both McCain/Palin and Obama/Biden. Policy details reveal much about the candidates. Obama shows significant details to almost every one of his positions on the issues. Compare Obama's specific plans to the vague platitudes and over arching goals from McCain.

I hope that we will not be bamboozled into another four years of Bush/McCain. The Republicans have owned the White House for the last seven plus years, and houses of congress for five of those seven years. There is no excuse for: the floundering economy, Iraq, Katrina, torture, and lack of affordable health care. The policies and actions of Republican controlled governance are at the root of these failures and continuing under Republicans will make things even worse. McCain has been part of the Republican party for over a quarter of a century, and voted with Bush 95% last year and 90% of the time over the last five years. McCain = Bush.

I can understand deciding to vote for the candidate who is best suited to fight for issues important to us. If your big issues are protecting corporate interests, and preserving American hegemony throughout the world, I understand you might vote for McCain. I hope Americans are better than that, more compassionate to our neighbors in our nation and the world.

I seek a better America through cooperation and shared sacrifice. Obama has shown he is willing to sacrifice and serve and continues to set an example to all of us. When we elect Obama, we will make America a better place for everyone.

Yes we can!

REMEMBER TO VOTE NOVEMBER 4 2008!

Coughing up a tumor

Warning: the following true story is icky. Read at your own risk.

Yesterday on the car ride home from work, around 5:30 PM, I coughed up a tumor.

Sounds lovely doesn't it.

One moment I was sitting in the car, taking a normal breath, and the next moment I coughed up a large piece of flesh. This was not phlegm. This was a big fleshy thing, and then blood, lots of blood. I had the car window open. I coughed most of the tumor and the blood out the window, however a piece of the tumor fell down my chin and down to my shirt. It was about 2 centimeters (about an inch) long. It was a black mass with some fleshy stuff attached to it and some blood.

Jason noticed my distress and asked, "Should I pull over?"

I replied, "I just coughed up a tumor, keep driving." I continued to cough up blood and spit it out the window. I also picked the piece of tumor up from my shirt and held it in my hand the whole way home. I breathed very shallowly in the car until we got home, because if I were going to cough up more matter, I wanted to do it in a controlled location where I could see what it was that I was coughing up.

We got home and I put the piece of tumor in a ziplock bag and tossed it in the freezer. I then went to the sink and coughed up more blood. This was mentally traumatizing. No one ever told me what to do if I were to cough up a tumor and my lungs start to bleed.

I asked Jason if perhaps I should call someone. As a response he asked me if I wanted to go to the hospital. I told him no and that I would like to wait a while to see if it got better or worse.

I called my parents, basically because I felt like I should call someone. After talking with my mother for about seven minutes I said I thought I was feeling better and said goodbye. So about thirty minutes after this episode started, it was done. I have coughed up no more blood or matter since.

I coughed a tumor out of my lung. I guess that is a good thing.

Then my brother told me that the plumbing was leaking from the upstairs bathroom through the ceiling again. We already had a plumber to the house on Tuesday.

Life in it's magical sacred ordinary weirdness, goes on.

Tom and Jennifer's wedding readings

My brother and his long time partner Jennifer recently married. Before they exchanged vows, they offered readings to those assembled. Tom and Jennifer are freethinkers, and neither is religious. I found deep meanings in their choices for readings and I wanted to share these with my readers.

From Thus Spoke Zarathustra

by Friedrich Nietzsche

I name you three metamorphoses of the spirit: how the spirit shall become a camel, the camel a lion and the lion at last a child.

There are many heavy things for the spirit, for the strong weight-bearing spirit in which dwell respect and awe. 'What is the heaviest thing?', thus asks the spirit and thus it kneels down like the camel and wants to be well laden.

Is it this: to feed upon the acorns and grass of knowledge and for the sake of wisdom to suffer hunger of the soul?

Is it this: to wade into even the dirtiest water when it is the water of the Real.

Is it this: to love those who despise us and to offer our hand to the ghost when it wants to frighten us?

The weight-bearing spirit takes upon itself all these heaviest things, like a camel hurrying laden into the desert.

But in the loneliest desert the second metamorphosis occurs: the spirit here becomes a lion; it wants to capture freedom and be lord in its own desert.

My brothers and sisters, why is the lion needed in the spirit? Why does the beast of burden, that renounces and is reverent, not suffice?

To create freedom for itself, freedom for new creation, only the might of the lion can do that. The camel once loved 'thou shalt' but the lion says 'I will'.

But tell me, what can the child do that even the lion cannot? Why must the preying lion still become a child?

The child is innocence and forgetfulness, new creation, a new beginning, a self-propelling wheel, a first motion, a sacred Yes.

Yes, my brothers and sisters, a sacred Yes is needed for the sport of creation.

I have named you three metamorphoses of the spirit: how the spirit became a camel, the camel a lion, and the lion at last a child.

Sonnet 116

by William Shakespeare

Let me not to the marriage of true minds

Admit impediments. Love is not love

Which alters when it alteration finds,

Or bends with the remover to remove:

O no! it is an ever-fixed mark,

That looks on tempests and is never shaken;

It is the star to every wandering bark,

Whose worth's unkown, although his height be taken.

Love's not Time's fool, though rosy lips and cheeks

Within his bending sickle's compass come:

Love alters not with his brief hours and weeks,

But bears it out even to the edge of doom.

If this be error and upon me proved,

I never writ, nor no man ever loved

Autumn is coming

I felt the site needed a little visual change. I changed the colors a bit to reflect that autumn is on it's way to Minnesota. I think the site looks a little softer now.

Any opinions?

Feeling great but going back to the hospital

Life has been grand lately.

Some people express their spirituality by attending church services. Others meditate quietly. For me there is nothing closer to divinity than following the rhythms of drummers and dancing around a huge crackling fire with bare skinned men and women. I made a trip south this weekend to attend the Laid Back Labor Day festivities at my favorite piece of land in Kansas. It was a rejuvenating trip that relaxed me and affirmed to me how wonderful and beautiful life can be.

Returning to Minneapolis after the weekend, I reconnected with several of my best friends from college, most of whom I had not seen for years.

The summer is rapidly coming to a close, and there is so much to live for.

Switching gears for a moment, it appears that the high dose Interleukin-2 treatments that I underwent earlier this year have been successful in slowing the growth of my cancer. This is great news. My doctors suggest that I continue having further high dose Interleukin-2 treatments.

I have scheduled my next treatment regiment to start September 16, 2008.
I plan to return to work on October 1, 2008.

Thanks for your continued support and well wishes.