Friday, March 31, 2006

Healing Images

More stream of consciousness, but bear with me. This household is exhausted from the heaviness of this struggle, as I'm sure you are, but that's what you get when you sign up to be a "blogger." No one ever accused me of being a lightweight on matters of "the meaning of life". Back in the 70's we used to have sarcastic discussions of "what is reality"; Howie's position during any of those discussions was simply stated, "Who Cares?" Well, my friend, it is obvious you care.

I was so touched by recent blog comments I began contemplating this community of support that has rallied to my aid. The thought arises from this contemplation: our bodies heal themselves when cut, we involuntarily stop bleeding and over time the cells heal the wound. This community of family and friends is a macrocosm of a single body; each of us comprising individual cells in that larger body. The image forms: my body is an individual injured cell, surrounded by healthy cells (you, my friends and family). The healthy cells rally to heal their injured cellular colleague. They press against my cell membrane, sending healing energy into my cell. My cell begins to heal, to reform into a healthy cell, just as the cells in my body are healing. The image is very strong and stays with me. I meditate last night saying a healing prayer known as the Medicine Buddha; A powerful sanskrit chant that takes me into a trance. The image of the community of healthy cells surrounding me stays with me throughout the meditation.

I awake this morning from a dream. Pope Benedict appeared to me in my dream, introduced himself, "Hello, I'm Pope Benedict", placed his hand on my forehead and blessed me. Clear as day he was standing there with his hand on my forehead. I couldn't tell you the last time I even thought about the Pope.

Just yesterday my friend Doug Kappel and I exchanged emails about whether I was a practicing Catholic. In response to his sister, Deb's, question about whether I was a practicing Catholic, I waxed on and on about my own spirituality, unbounded by Catholic dogma or practice. I am more Buddhist or Hindu than Catholic in my practices, yet there is no conflict between my spirituality and that of any other religious follower. Spirit is spirit. So what's the Pope doing appearing in my dream? PLease, do not answer that rhetorical question. I accept the ways of spiritual healing and acknowledge I know little of that world. But I understand this much: you are as important to me in this healing process as are my doctors. You are all a part of the energy of the world, whether called God, Jesus, Spirit, or Universal Consciousness, and that energy is all powerful. Thank you for sending your prayers and energy into my cells. Love, Dan

P.S. I told Doug only yesterday that I would not publicize my spiritual beliefs as I did not want the blog to become a forum for religious debate, and here I am putting it on the front burner. But what am I to do when the Pope appears to me in a dream? I truly am awed and humbled by the experience, like so many I have had in the past year.

P.S.S. I spoke with Rifkin by phone the other night about my concerns. He is such a nice doctor. He just presented a paper that demonstrates that some people don't respond to velcade until the 4th, 5th, or 6th cycle. So, even though I might not qualify for continued participation in the clinical trial, I might be able to go on the velcade for a few more cycles, if my numbers are continuing to move downward. Also, the coordinator of the clinical trial told me that insurance usually pays for the velcade. We'll have a plan on April 14th, after we meet with Rifkin (late afternoon appointment so don't expect a posting until the 15th.

Monday, March 27, 2006

Musings of a Passenger on a Roller Coaster

I don't know how to relate this day's events other than the stream of consciousness that has plagued me all day. This posting will probably provide the clearest look into the heart of a cancer survivor struggling with his disease. It is neither optimistic nor pessimistic. It is a window into my mind this day, like so many days. It is raw and unapologetic.

We were told early on that this would be a roller coaster ride, why do I continually forget that? There is a lesson here, not to go up when the news is good, no matter how tempting, and not to go down when the news is bad. But I am human after all.

First the context: Feeling good, run into a friend last night at the Avalanche hockey game whom I haven't seen since "the diagnosis". He has heard. He cannot believe how good I look. I tell him the new drug is working.

This morning I trot off to the clinic; decline Susan's invitation to accompany me as "I will not be seeing Rifkin." Check in and get ready for the stick in the arm for the blood draw, the antinausea meds, and the velcade. Nurse says, "I see you're seeing Rifkin today."

"No, just getting the velcade as far as I know. But if he wants to stop in, I'll always be glad to talk with him." Nurse: "no, you are on his schedule so he will be seeing you."

Everything OK on the exam, but then Rifkin lays on me that I will not continue on velcade for another 3 months unless my numbers are down 25% from baseline. That translates, according to him, to a need to get the IGGs to 2100. He says my baseline is 2800--what your IGGs were when we started. "What's up with that, you told me I was at 3220 and dropped to 2800." We argue about my baseline, he punts the issue by saying, "well you haven't acheived the 25% drop even if you started at 3200." I'm not happy. and I have enough energy to get angry as opposed to sad. I start to argue, displaying signs of my old self, but I'm no match for the doctor, not on chemo, not on his turf. Whatever I sputter is unpersuasive. Besides, I don't even know why I'm arguing. Frustration, no doubt. But, no resolution of the issue, as I still have this last cycle to see where my numbers will end up. Do I dare hope for a 500 number drop on this cycle?

If I don't get to the magic 25% drop in numbers, I go on another clinical trial. THis time with Revlimid, a new drug that came out about the time velcade was approved a year ago. Rifkin is all excited about this drug; just like he was excited about velcade. He just returned from a conference last week singing the praises of Revlimid; "it's had some amazing results." Same words I heard 2 months ago about velcade. He leaves. I steam, I sulk. I can't think. I am frustrated not only because I can't think, but I can't think quickly anymore. What's the point. My brain is fried with chemo, emotion, frustration, anger. I used to be so proud of my great memory. Nothing could escape my steel trap mind. The steel trap has been cut into a sieve. Nothing stays in anymore.

Questions drown my brain, but he is already out the door and down the hall.No one ever told me of "qualifying criteria" for continued participation. I'm reminded of what I read only last night:

"The principle is simple and at first glance makes a certain sort of sense. In the case of complicated, possibly fatal and emotionally charged illness, never tell the patient more than he is likely to find out for himself, and only ever give the best-case scenario."

This from the book written by a multiple myeloma survivor of 7 years who refused all medical treatment and chemotherapy and went natural with herbs, vitamins, breathing exercises. "Living Proof" "A Medical Mutiny" by Micheal Gearin-Tosh. I understand this. So what if Rifkin had told me at the outset I need to achieve a 25% drop or no second three month cycle? I would have been fretting, just like I am now--only I would have started 2 months ago. I really believe oncologists learn to give dribs and drabs, only as needed. But truly out of compassion for their patients, as they know from experience there is only so much we can handle and then we shut down, or go into a permanent downward spiral.

Why am I reading this book, when I have chosen the opposite route? Is the herbal routine a fallback? Will I have the courage to go herbal when/if chemo fails me? Will it be too late? All I want is hope, give me good news, tell me I am making progress against this insidious cancer.

Instead, Rifkin tells me, "we've stabilized your disease." This does nothing for me. Stability is not our goal.

The Revlimid trial is called a "compassionate use" study. What is that? Sounds more like charity than science. I long for a scientifically established certain outcome. Not in this life. Not for anyone.

In the minutes before Rifkin walked in I was reading the buddhist monk, Nhich Nhat Hanh's book, "Peace is Every Step", where he says, "Hope is for the future. It cannot help us discover joy, peace, or enlightenment in the present moment....Hope can create an obstacle for you, and if you dwell in the energy of hope, you will not bring yourself back entirely into the present moment." What am I to think? I want to hope. Hope springs eternal. Am I creating obstacles to my enjoying my life by hoping for a respite from this nastiness? No doubt. Seems to be the human condition.

I no longer want to be a cancer survivor, the "brave, courageous" person facing this nasty disease. I never wanted to be "an example" of how to cope with such news. I want to slip back into my anonymous life. There is no "hope" of that, unfortunately. No matter. The journey has already begun and must be completed.

Another poem crosses my mind; this one from a book my brother, Tom, sent me, "A Whole New Life" by Reynolds Price. An encouraging, uplifting, inspiration memoir of Reynolds' cancer survival story. His poem, entitled, "The Dream of Refusal" ends with this: "I will walk all night. I will not die of cancer. Nothing will make me dance in that dark."

Yes, that would describe the state of my mind and my spirit. I refuse to acknowledge the darkness and most assuredly will not "go there" in my thoughts, despite daily temptations.

So, I get my velcade today and another shot on Thursday, then the blood draw a week later to see where my IGGs are. Meeting with Rifkin on APril 14th for the blood test results and the plan of action. Two weeks off the velcade. Is that good news? Hardly seems like it anymore. THe news of no bone marrow biopsy also fails to lift my spirits. Rifkin explained that if one doesn't qualify for continued participation then, the drug is no longer given free by the manufacturer. While he could continue me with it, it would be in a non FDA approved application (off label) and thus, my insurance company might (MOST PROBABLY) fight paying for it on the basis that it is experimental. At $6,000 a week, that expense would chew me up in no time.

The roller coast has reached its zenith and is plummeting. How can one sit in an examining room and have the same sensation in one's stomach as a plummeting roller coaster? I want to throw up.

I call Susan from the parking lot, give her the abbreviated version of events and go to work. I cannot go home with my thoughts. Escape to my work--an old habit perhaps, but effective. Before I know it, it's 5 o'clock, time to go home. How time flies when...

Catherine and Susan have conspired to present me with a fabulous meal and the face of optimism. "Dad, you're entitled to your two days." Catherine says, referring to what we have all learned is the time I need to get over this kind of news. Too much bad news, too many two day recovery periods. Well, one day down, one to go. Tonight during dinner I was in the present. I was enjoying Susan and Catherine and their love for me. In this household Susan's heritage has taught us: food is love.

Cousine Eileen just dropped in, in the middle of the last sentence, with homemade chocolate chip cookies, just for me. No kidding. Food is love.

I tell myself, stay in the present, just stay in the light. Do not dance in the dark. Goodnight my friends. I am fine. I love you all. Dan

Thursday, March 23, 2006

Velcade Continues to Do Its Work

Yes, today is the day for the "numbers" report. Today, March 23rd, also marks the one year anniversary of my multiple myeloma diagnosis. First, the numbers: Iggs are down to 2601 from a previous 2837. So, we have moved from 3220 to 2601--more than 600 points in a little over 2 months. I am happy, relieved, encouraged, hopeful, and thankful. I know we are not "there" yet, but we are moving in the right direction and that makes all the difference in how I feel when I get out of bed each morning. My white count is also better than usual. For you numbers watchers: white count at 2.5 today, with neutrophils at 1.4. Usually those numbers plummet as soon as I start my velcade (for example, I expected the white count to be around 1.6 and neutrophils around 800.)

Contrary to what I last reported, I did not go on the herbal regime. I tried it for a couple of days, felt sick to my stomach and started to question why I would want to potentially interfere with a good drug. So I just used a concoction that is mainly pulverized rice powder. Now that the numbers have moved, I don't know whether to stay with that powder or stop it. The numbers did move down more than 200 points. But would they have moved further without its use? or less? who knows?I am waffling, so I will ask you bloggers for your thoughts--continue? or discontinue? I am most anxious to hear from our scientist friend, Molly Johnston. Have I messed up the experiment by adding too many variables? What to do now?

And the final results of the DNA testing of Tom's blood shows he is also a 100% match. That makes both my brothers acceptable donors for a stem cell transplant. Looks like that backyard tussle may have to take place after all--unless I can get into remission on the velcade. Yeh, I like that approach--no more fighting my brothers.

Now, about that 1 year anniversary. One year ago, almost to the hour, I received a call from my internist telling me that my MRI and blood work were leading to the diagnosis of multiple myeloma. He had already faxed my info to Rifkin and talked to him about my diagnosis. He had made an appointment for me with Rifkin for the next day. Susan was in Houston taking care of her brother following his back surgery and I had to call her with the news and ask her to get on a plane to be at the appointment with Rifkin. She arrived at 8 a.m. the following morning, having gotten no sleep. In the year that has passed we have received a prostate cancer diagnosis, and gone through 5 chemo regimes, 2 back surgeries, a stem cell transplant and various other hospitalizations and treatments. But, guess what? In the words of Elton John: I'm Still Standing.

I feel better these days. Better, in fact, than I have in many many months. I believe this is a good drug and it's working. Susan and Catherine know I'm feeling better because I am not as passive as I have been over the past many months. They sometimes would prefer me in a more sedated state. No, not really, just less feisty. What can I say? It's been a long time without energy. I'm still adjusting to this new found energy--still not the energy I used to have but clearly more than I've had since .....oh my god, since June. We are making progress!

And a Julia story: Julia is just completing her spring break. She and a friend spent their 10 day spring break at my cousin's, Kelly Boulger's, in Orange County, CA. Kelly and his wife, Donna, graciously offered to let Julia and her friend, Suzanne, stay with them and explore southern California. Have they lost their minds--offering to house two 18 year girls on spring break? Much to our amazement, Julia accepted his offer, and moved in with them last Thursday! She and her friend Suzanne have "hung out" with Kelly's son, Sean, for much of the week, and gotten to know the new cousins, Kelly's and Donna's other kids: Riley, Shannon, and Corinne. The cousins got along famously, Julia and Suzanne got to experience southern Cal., and Julia got to see my uncle Dabby and aunt Phyllis. Susan and I are very grateful to Kelly and Donna for their hospitality, and are appreciative of what good kids Julia and Suzanne are. Kelly reports they were no problem whatsoever. Definitely not the kind of spring break that makes the news!

Next report? I guess it will be the bone marrow biopsy that should happen in about 2 weeks. Once that report comes in I will know if I am on for another 3 month velcade regime. I hope so. Until then, much love to all. Dan

And from Susan: I have not gone to the last few visits to the cancer center feeling that queasiness in the pit of my stomach as I asked Dan if he wanted me to come along. He would kindly say, "not necessary", and I would walk or pray or wait to hear from him. Today I decided to just go along and I was so glad I did. This strong, brave, determined to get this in remission guy waited too patiently for the numbers. When he read the report I saw the relief in his body and his face. Sometimes, because he never complains and always puts the best face on everything, I forget what a huge mountain he is climbing and how much energy it takes to face the day and this terrible cancer. So I left thinking that I am blessed to be on this journey with such an extraordinary man. It is not what I would have wanted but I will accept it with as much grace as I can for I am so grateful that Dan is still here a year later, thank God.

And he walked in today with the Colorado Super Lawyers Journal. He is named a "Colorado Super Lawyer" for Plaintiff's Personal Injury. This represents the top 5% of the lawyers in Colorado, as voted on by the Colorado Bar. The girls and I are so proud of him. Way to go Dan!!!

Sunday, March 12, 2006

South America

Here is a photo from Rio, in front of the great Cristo de Corcovado. [Posted for Dan by Glen]


Here are "get well" pictures from Africa. Unbelievable! Now, off to Australia. and we'll have covered the world. [Posted for Dan by Glen]

Friday, March 10, 2006

No One Is Alone

From Susan: In reading the blog last night I was struck by something Joe wrote. In Naples, he described the hummm before mass began and then the walk up to received communion, not in customary single file, but in pairs. He said no one is ever alone in Naples. That resonated. I thought about it all day. I have days sometimes when I don't want to exercise, tidy the house, cook a meal, or answer the phone. The most I can do is lie on the sofa, brain dead. I think that every now and then the enormity of the past year just numbs the senses and I shut down. Without being too psychological, I suppose I am protecting myself.

But here is what happened. Cousin Eileen dropped by on Wednesday evening and we made sauce until 10:30 pm. I planned to meet her on Thursday and having spent my hours on the sofa, decided to call and tell her I was unable to move. But the mailman, Dwight, rang the doorbell with a package and asked how "Faja" was doing. Julia had written her Dad a card earlier in the week and had addressed it with her pet name for her Dad--"Faja". Dwight, who picks up on everything, reconnected me with his inquiry as to "Faja's" health.

So I wrap myself in a beautiful coat my brother sent for no reason other than a need to once again express his generosity, and found myself singing as I walked down 2nd Ave. I ran into our neighbors, Ingrid and Byron, and spent 20 minutes chatting. I arrived at the Marriott and spent a satifying few hours talking to Eileen about home (New York) and rememberances of another life.

But back to Joe's comment. Walking home about 10:30pm, still singing, and thinking that although it has been a year, the circle remains, the bonds with our family and friends grow stronger, and I find myself happy. Will wonders never cease?!

P.S. Dan didn't have a terrible Friday and we just finished a wonderful plate of pasta with homemade sauce. All topped off with a bottle of Italian wine (Dan even had a glass).

Thursday, March 02, 2006

Numbers Move Slightly, But in the Right Direction

I know many of you are waiting for the news of the "numbers," so here they are: IGG at 2837. Previously it was at 2853. Not much movement, but at least in the right direction. I am remarkably unphased by it. As I was sitting in the exam room, after they had drawn the blood and just waiting for the results I realized that I had no investment in the outcome. I am feeling so much better than 6 or 7 months ago and I still believe that this drug will work for me that a temporary measurement of the numbers feels close to meaningless. I have been on this roller coaster for so long (11 months) that ups and downs are a given.

I had also decided that if there was little movement in the numbers today I would start back on the herbs, so when I got home that's exactly what I did. If I'm going to be a guinea pig (clinical trial= experimental) then I will do my own little experiment. This is also motivated by the drop in the white count. The white count did not move up significantly during the week off, and today I am actually neutropenic again. At a minimum I believe quite strongly that the herbal regime will boost the white count. And the white blood cells should have some capacity to attack the cancer cells, so the more the merrier, as they say. I will stick with it until the next myeloma blood draw and report of results. So, it will be about a 10 day test. If no adverse consequences, i.e., numbers going up, then I'll stick with it, as I know an herbal treatment will likely take longer to have some effect on the cancer.

Oh, they also measured my PSA (prostate specific antigen),which is .1. That means that the hormone shot they have been giving me (along with the velcade perhaps) is keeping the prostate cancer from growing. My PSA was 7.5 last March which lead to the prostate cancer diagnosis. So that is good, as it looks like it will take some time to get this myeloma in line (or out of my system). I'm scheduled for another hormone shot in a month. Love those hot flashes! NOT! I have developed great empathy (Yes, empathy) for all you women who have gone through menopause and suffered those years of hot flashes. Well, you got nothing on me anymore, my dears. I share your tears, and your sweats.

To put this all in perspective, I overheard a conversation today with a man who needs a transplant and whose autologous (his own) stem cell transplant didn't work and whose sister was not a match, and who they had yet to come up with a match in the national donor bank. Even if they find a match, a transplant from an unrelated donor is a much more difficult prospect than from a sibling. I can count my blessings every day for my brothers' matches.

Incidentally, my mother predicted long ago that Mike would be the match. A mother's intuition is hard to beat. She also said this fall that despite everything I am going through I will be OK--she just has that feeling, she says. Her intuition always threw me. When I was in college and would leave to go visit my friends, such as Spike and Howie in Grand Forks, she always knew the day I would return, even though I wouldn't have decided until that day. I could never understand that. And now she's even agreed to host a party at her house for the bloggers. What a Mom! But then all the people I grew up with have always known that.

Now, about that decision of selecting the proper donor. I see that the "Big Fella" has yet to weigh in on the matter. In reflecting on that I think I understand why. All criteria seem to have a common element: toughness. Whether a fight in the back yard, as I suggested, a test of orneriness as suggested by Joe, a Risk game as suggested by Kathy, or either of Spike's ideas, they all have that same theme. Now, if that is the test, can the Big Fella measure up when he is now going around in drag, masquerading as Mrs. Joshwick? Muscles Mike (his self assigned nickname in high school) would be so ashamed. Perhaps he's suffering some regret about revealing so much of his feminine side in light of the macho tests being recommended. I'm sure his silence has nothing to do with the fact that he is in Steamboat Springs, Colorado skiing.

And for those of you who didn't know, Tom's reference to his blood being able to beat cancer is serious. He recently underwent surgery for prostate cancer (late Jan.) and it appears to have been a great success. He is doing very well, is back at work, and as you can see, has a bit of orneriness still in him. Way to go Tom!

Cousin Rich just called and will be here soon, so I'll sign off. I'm doing fine, the velcade will do its job and I've got my two brothers to back me up if it doesn't. I'll bring you up to date in a week or so. Love, Dan