A 2 to 4 Week Reprieve

The long awaited visit was a bit anticlimatic. So I guess that's a good thing. Numbers report: IGGs 1898, up from 1756, or something like that last month. M protein is at 1.2. It should be zero and has been at 1.0 for the past couple of months, up from a low of .6 in November or December. The white count from last week is 2.1, which is low. Neutrophils, which are the most important white cells are at 1100. I think that following my transplant they needed to be at 1500 before I could leave the hospital. So, I'm definitely immuno-compromised. All I feel is tired and then more tired. I'm dosing with Vitamin C, hoping to fight off any bugs that might want to take advantage.

So, the plan? Rifkin will see me in 2 weeks to check the white count. If it's still low, he'll probably start treatment. Otherwise, if it goes up, he'll wait until my IGGS reach 2000, then he'll start treatment. He feels that the rise of 100 points from last month is not critical. Once treatment begins, he wants to do a 4 drug combination (VDRB) of velcade, decadron (steroid), revlimid (new drug approved at same time velcade was approved) and biaxcin (also known as clarithromyicin)--which seems to be an antibiotic used for serious bacterial infections like pneumonia, streptoccus, etc. Rifkin said this seemed to be the consensus of the group he consulted. He gave us the name of the doctor who just finished a trial on this and said the results were very promising. The doses of velcade and the steroid may be lower than what I was on last summer, which my nerves will appreciate. This VDRB combination has been so effective that physicians are considering recommending this instead of stem cell transplants, which is quite encouraging. Prior to these two new drugs, velcade and revlimid, being approved, there was only one treatment that was thought to be capable of driving this nasty disease into temporary remission--which was stem cell transplant.

Many months ago Rifkin told us that, while velcade and revlimid were exciting developments, drug combinations held even more promise. During this 8 months without chemo, a number of clinical trials have reported their results (results are only published when the trials are completed) and they hold much promise in terms of extending longevity, time to disease progression, etc. So, the longer I go without treatment, the more the doctors know.

And, Rifkin released me to travel to New York this week to visit Susan's cousins, Arlene and Jim, and our friends Sigun and Joe. Rifkin did not enthusiastically encourage us to go, rather I would say he reluctantly approved--no doubt due to the low white count, but on the other hand, wanting Susan and me to have a life. So, with that in mind we intend to "have a life" by going to the ocean for a week. Once again our friends and family are taking care of us, as they have for the past 2 years. I guess I'll provide a new post in about 2 weeks just to let you know what the status is.
All my love,
Dan

Hold the Treatment, Let's Consult the Nation's Experts

We had the much dreaded meeting with Dr. Rifkin this afternoon. I had blood drawn on Tuesday so we could have the most current "numbers" to discuss. I had with me a color graph of my IGG's since this nonsense began (compliments of my daughter Catherine), research from the many recent clinical trials (thanks to Ted), and 3 pages of questions. The IGG's are up to 1786, a jump of 136. Hematocrit is down a bit, but I'm not anemic. Everything else is OK. We reviewed the many treatment options, discussed my questions, and arrived at the following decision: Rifkin wants to present my case as part of a presentation he is giving in Houston on March 29th. He specifically intends to discuss it with the nation's myeloma experts as part of their prep the night before the seminar. (He liked Catherine's chart, thought it was "helpful" and, who knows, may use it). His goal? To arrive at a treatment option that (1) could be used long term, (2) is not toxic, and (3) controls the myeloma. Who could disagree with that? As a consequence he is not going to start me on any treatment right now. He is unconcerned about going another month without treatment, even though the numbers are drifting up.

Just as I have the greatest family and the most fantastic friends, I have the best doctor. Susan and I love this guy. We will have the nation's experts consulting on my case! So, my friends, I have a respite. We continue to live month to month and that's OK. It brings the focus to the day to day and keeps the mind from running too far ahead of our lives. Amazingly that can be the source of great joy. Any moment you choose to live in is most probably joyous. So we will stay there for now, and if we are strong enough, we will stay there forever.

Love to all,
Dan

Shaking Hands With Disappointment

"I'd like to shake your hand, Disappointment. Looks like you win again." Excuse my theft of the Neil Young lyric, but there is no other way to describe the feeling today, when advised by Dr. Rifkin that the inevitable is upon us--a return to chemo. While we don't have the numbers from today, the trend is such that he is "worried". I suppose there is a chance that the numbers report on Monday could turn the other way and hold off treatment, but there was not much optimism about that being the case. The trend is upward with the IGGS, as well as the M protein, two critical measurements. Rifkin wasn't ready to talk in much detail about the options. We have an appointment in 3 weeks, to review options, data, and to plan the course ahead. The appointment is on March 22, a mere 2 days before the 2 year anniversary of the diagnosis. I will be doing my homework so I can make a recommendation to him. It will likely be velcade and some other drug, either a steroid or another chemo drug. God, he must hate me as a patient!

I'm having more difficulty handling the news than I would have expected. Despite the prostate surgery, and the recovery from that, this past 6 months has been a welcome return to some routine in our lives. I have been able to keep out thoughts of returning to treatment and generally enjoyed most of my days. Now that a return to treatment is likely, all the memories of being on chemo flood my mind. Stated simply, it's just no fun. Can the family handle more 'roid rage? And of course there is concern that treatments won't work and we'll face more difficult decisions. The mind loves the drama. I guess I'll have to get my mind back into shape to steele it from these flights into the valleys of pessimism.

But to give things a different perspective: A year ago I was bracing for yet another transplant, using the stem cells from one of my brothers. Through that lens, today seems OK. I told Suz today I need my two days to get over this news and get my head screwed on straight. I'll come around soon. In fact, as I write this to my silent bloggers, I start to feel better already. The connection this blog has given me to so many people around the world continues to lift my spirits. The wonders of cyberspace.

Next week Susan and I will be in Scottsdale, AZ. My friend, Joe Epstein, whom I'm mediating with, offered us his home ithere. All this was planned before we had today's news. We must be in sync with something. So that will be a nice respite before life turns more difficult. Joe has been a godsend. He has kept me as busy as I can be this month with mediations, which is a tremendous help with the dental bills, health insurance, etc. Plus it gets me out of the house and gives me something to do. I continue to be amazed at how our friends still take care of us.

We are experiencing first hand the country's health insurance crisis. Because my health insurance is keyed to my employment and there is always the risk of my not being able to work at all, losing my health insurance and having to go on Medicare, we've had to get Susan and Julia on a private policy (so she wouldn't be without insurance if I went on Medicare). Not surprisingly, at her age, she has a few health issues, which the new insurance company has used to increase the standard premium by 75%!!! But we had no choice. We are glad her insurance is no longer linked to my employment, although we pay dearly for it. I don't know what people do who don't have the means to handle these costs. No, I do know what they do--they don't have insurance.

We are doing OK. We will let you know what we learn at the 3/22 appointment. Stick with us. We will continue to enjoy life, despite today's news. We've dealt with worse and we still love our life and all those wonderful people who fill our lives with such joy.

Neil Young ends his lyric about meeting disappointment with this, "But this time might be the last." He goes on to say, "I'm savin' the best 'til last; let's leave this all in the past." Yes, maybe this disappointment might be the last. And if it's not? Well, we will continue with this journey. Love to all,
Dan

Triple Crowns and Other Fun

One aspect of chemo that no one ever told me about was the effect on the salivary glands. It seems that chemo can disable them, as it has done with mine. And without a good amount of saliva being generated, well, bacteria finds places to reside. So, after my first visit to the dentist since before the transplant (I couldn't go when I was on chemo) I now have 6 crowns coming. I've survived 3 last week, and am scheduled for 3 more in a couple of weeks. The fun just never ends!

Speaking of which, I also will be demanding a refund for the flu shot I got this year (as soon as I can remember where I got it) as I now have the flu. Of course, with me, any illness gives rise to major concern, so Susan and I spent this morning at the clinic and the hospital for the complete workup. Throw onto the flu a touch of pneumonia and we're having some fun now! But I'm on Tamiflu (Catherine advised that I should try to squirrel some away in case bird flu hits) and an antibiotic and expect I'll be improving in a few days. I think Susan has a touch of the flu also, but she didn't get anywhere near the attention I got, nor the drugs. So she's just suffering it out.

Other than that, we're doing just fine here.

Normalcy Continues

Oh, those dreaded IGG counts came in this week: IGG's are now at 1596, up from 1433. Still in the normal range, which tops out at about 1680. As I've said before, we certainly don't like the upward movement but it seems to be inevitable--at least according to Dr. Rifkin, who seems compelled at every visit to advise me, "you know it's going to come back". I continue to reject that in my mind, but it's hard to argue with as I watch the numbers going up. On a positive note, there are other indicators that Dr. Rifkin is watching which are improving. One in particular is the Kappa Lambda ratio of the light chains in the blood. Now, if anyone of you out there understands what that entails I would appreciate some enlightenment. I have tried to figure out what this ratio means but I just can't get it. Anyway, that ratio has been off since diagnosis and now is very close to normal. As with other visits, given that the IGGs are still normal, I know I have at least another month without treatment and probably two.

I also had my checkup with my urologist and everything continues to be fine on that front. PSA is 0.

My mediation practice is set to start this next month. I'll be working with a very experienced mediator here in town, Joe Epstein, and he is rapidly filling my calendar. As I only want to do 1 or 2 mediations a week, he has already filled my February calendar. I'm still struggling a bit with letting go of the identity of a trial lawyer, but am confident that once I fully extract myself from my law firm and start my new life as mediator it will be fine.

The family is doing well. Julia is applying to study abroad next year in South Africa, working with HIV/AIDS clinics there. South Africa certainly has its problems, not the least of which are crime, muggings, etc. But she is determined to work in a third world country and ultimately we left the decision to her. Catherine continues to love her job and is learning more and more about investing (but she still refuses to advise me about my retirement portfolio). Susan now has a job--working as my Chief Operating Officer in my mediation practice. In order to get the health insurance coverage I need, my business is required to employ 2 people. So she is in charge of the bookkeeping, billing, banking, scheduling, filing, etc. She seems happy to do it, but maybe that's only because she knows this business will get me out of the house and she is willing to do anything to see that happen!!

The two year anniversary of my MM diagnosis is just around the corner--March 24. It's hard to believe it's been two years and it's harder to remember what life was like before cancer. I remember when my sister was here in the fall of 2005 just after my transplant and she asked me if I ever had moments where I forgot about having cancer. Sadly, I responded no. I can now say I do have those moments, maybe even hours now where I am engaged in some activity and oblivious of the fact of my disease. I guess one could call that progress.

So, in closing, thanks to all of you who continue to hang in there for us, who silently check the blog, who call and write, and who pray. We know you're out there and we are thankful every day for the blessings that are our friends and family.
Love,
Dan

Those Troublesome Numbers--Rising But Still "Normal"

I managed to get through our snow-packed streets last week and saw Dr. Rifkin for my monthly checkup. Everything fine at the checkup, white count, hematocrit and platelets are all good. Returned yesterday to get 4 immunization shots due to the fact that my transplant wiped out most of my immunizations, like diphtheria, tetanus, Hepatitus. I also picked up my myeloma numbers: IGGs are at 1433, up from 1207 last month. Still in the "normal" range, but I personally don't like the drifting upward. That being said, the doctor has not said this is a trend or that treatment will soon be resumed. We'll just wait to see what next month's numbers show.

So we are once again challenged in our mental discipline. We really can't contemplate returning to the chemo, whether it's the 'roid rage, the fatigue, the shooting pains, the insatiable appetite or some other unpleasant aspect of treatment. This respite has felt so good and given us a taste of the normal. Of course, we want it to continue. So we steel our minds to stay in present, to enjoy each day, and not to stray forward or to indulge in the anxieties and worries of what might be coming. Today we are happy. Isn't that all that matters?

We had a fabulous holiday. We hooked up with Julia on 12/22 on our way to the Broadmoor for our second annual respite in honor of Susan's birthday. We indulged ourselves with food, relaxation and a trip to the spa. Christmas was fairly low key but very relaxing as was the whole holiday season. Julia is home until Jan. 20th. Catherine continues to love her job and I will soon be moving into a different line of work--mediation, as it does not appear I will be able to do the work of a trial lawyer. Those plans are in the works and should be up and running in about a month or so.

We failed to get our Christmas, New Year's, or Holiday letter out this year, for the second year in a row. But I feel that we have stayed in touch with all our friends and you are fully up to speed on this past year's events. We are happy to be bringing in a new year and to see this past year in our rear view mirror. We continue to be thankful for the support of family and friends and are truly enjoying each day. We wish you all a happy, healthy and prosperous new year.
Love,
Dan

Digging Out

Here you go bloggers, the most recent pictures of our snowstorm. Catherine, Susan and I just finished digging out Catherine's car (Toyota 4Runner). I supervised and they shoveled. I then drove the car around the block. Julia remains stranded in Colorado Springs as the main highway between Denver and there remains closed. We are hoping to see her for Christmas.

Thanksgiving Football

Here are some photos of our Thanksgiving Day football game. In addition to yours truly, other participants included Catherine, Julia, cousins Arlene and Jim Bell, and Julia's friend "Gold Mine" Bob--who works in a gold mine. Fancy that! Susan stayed home to cook! Catherine was voted most improved player for learning how to throw a perfect spiral. Julia was most surprising player--she actually knew how to throw a football. With this current blizzard, and since I have learned how to post pictures, we'll give you all a look at our snow conditions in a few days.

Oh, what a difference a year makes

Ah, here it is, the "numbers" report. IGG's are at 1207, a very slight 19 point rise from the previous 1188. Although a few other markers still show the presence of cancer in the blood, there is no treatment planned based on these latest numbers, primarily because the IGGs are still well within the normal range of 680 to 1680. White count is good, as are platelets. Hematocrit is low for most people, but good for me. I continue to feel better, although fatigue is still an issue, but I need fewer daily naps than before. Still some other lingering issues, but they are small compared to where we have been.

I have resumed the herbal regime that I started and then stopped in January when I went on the velcade (that does seem a long time ago, doesn't it?). I've only been doing it for about 2 weeks, so too early to know whether its effective (maybe we'll never know--if the numbers stay down, we can give credit to so many people, therapies, prayers, etc)

So life has taken on a new feel. It feels much less like the life and death struggle it was for so many months last year and into this year. Now we have 3 to 4 weeks of relative peace and then anxiety creeps in as the next appointment with Rifkin approaches. The good numbers report always brings me relief, although Susan would like for the numbers to stop drifting upward entirely. Of course, so would I, but I am a bit more accepting of the ups and downs of this experience. It will be what it will be. As time goes by I gain more and more confidence that new drug therapies and combinations of drugs will be developed which will keep me going and going and going.

This year's Thanksgiving was quite a contrast to last year's. Our friends the Richardsons invited us to their home last year and saved us from a very difficult holiday at home, as I was too sick to have company and even had to nap while at the Richardsons. This year Susan's cousin Arlene, and her husband Jim, came to Denver for the week, and we also had a few other guests, totalling 13 at our table. I was even able to prepare and stuff the bird. Susan, of course, prepared the 10 other dishes!! We even went out and "threw the old pigskin around" with Arlene and Jim. My passes were the worst, but it was great to just be out in the park in the nice Denver weather. Jim taught Catherine how to throw a perfect spiral , which was one of the highlights of the day in the park, the other being the game of tackle that Julia and Catherine engaged in.

I told Susan the other day that I felt like I was waking up from a bad acid trip. Her response? Yeh, except that you woke up shorter and fatter. Oh, what a difference a year makes! I don't get any respect.

My next appointment is just before Christmas so we won't have any numbers until after the 25th. I'll check in with you all then. Until then, Happy Holidays, Merry Christmas, Happy Hanukkah, Happy? Kwanza, and every other holiday wish you might like for the upcoming season.

Love,
Dan

Status---Stable

A brief update for you regular bloggers. The proverbial numbers were drawn this week. IGG's are up ever so slightly, from 1144 to 1188. Nothing to worry about. Dr. Rifkin explained that we may see some jumping around of the numbers and only when an upward trend is identified will we start talking about resuming treatment. He has no idea how long this plateau will continue. My brother Tom tells me that a "trend" requires three points (don't ask me where this piece of information comes from, but I will trust the Ph.D.) Anyway, Rifkin continues to be very pleased with my status, congratulated me repeatedly on getting here and will see me again in 3 weeks.

I have started swimming again (trying to lose that 50 pounds the steroids packed on my belly). I cannot express how good it feels to be coming out of the fog. I'm off all drugs, other than one antibiotic. Susan, Catherine and Julia are also enjoying having me back, although they continue to fail to appreciate my sense of humor, which you will all be glad to learn, has returned in tact. So we are enjoying this break from the roid rage, sleeplessness, and fear. We know it's probably not over but the struggle has been redefined, and for that we are grateful.

I'll update you after the next visit.

Love, Dan

A Truce Perhaps? and Healing Images Revisited

Please forgive the long post, but at times, they are warranted. Saw Dr. Rifkin today and he was elated and ecstatic. This is the first he discussed the new IGGs (1144) after 4 weeks of no chemo. Excellent. Other blood measurements which I don't understand also are good, and continuing in the right trend, although they do confirm the continued presence of Mulitple Myeloma. But Rifkin said if I were a new patient, under the new treatment protocals, I would not qualify for treatment at this time: no current bone involvement, normal IGGS, and pretty normal white and red cell count. So, he is not going to treat me either, unless and until the IGGs, or other disease markers start showing the degree of the disease is increasing. He called my current state a plateau. Of course, I had to ask whether the numbers were likely to go up. His answer, yes. But as soon as I heard it I rejected it. I have never followed the expected course here and I won't start now. May the plateau extend beyond the horizon of my life.

So, I go in every 3 weeks for a blood draw and numbers check. As long as we stay on this plateau, no velcade, no steroids. I will receive zometa (the bone hardening drug) every other month (down from once a month).

Rifkin made a comment that I greatly appreciated for implicit in it was the acknowledge of the roller coaster through fire that he has sent me through over the past 9 months. He said, "I really beat you up to get you ready for this prostate surgery, there was no other way to get those numbers down. Now you need a break." This is in reference, I believe to the 11 or 12 cycles of velcade (the last 7 or 8 with the steroid booster) I have only heard of one other patient at the clinic who got to 8 cycles. So, yes, it felt like a beating, and Susan, Catherine and Julia took a piece of it also dealing with the roid rage. Time for some healing. As I got in my car, tears flowed from my eyes. Tears of relief, joy, or however you describe how someone might react to the news that he will get a respite from the most rigorous ordeal he has faced in his lifetime.

I think of the current state of stasis in my blood as a kind of truce. My myeloma and I have come to some terms. I will live for now, and it will live in me for now. I have great respect for this disease. It has the potential to bring me to my knees in an instant. And at the same time, this disease knows I will stand up and walk, even after it throws me to the ground over and over. Whether you call it a stalemate or a truce or something else, we are coexisting for the moment.

In reflecting on the healing that has obviously occurred over the past many months, Susan reminded me of a recent article in the New York Times, Science Section, about the healing energy of friends and families. duh! yeh! where have these scientists been.

So I have first duplicated a blog posting I did in March called healing images, because it perfectly describes these phenomenom of receiving healing energy from family and friends. Then the New York Times article (parts of it) follow.

I feel I am learning something very profound here, and everyone of you is a part of it. Thank you for your lessons. My life depends on it. Keep the prayers, meditations, good thoughts, cards, letters, emails, blog notes, silent "good thoughts" and whatever else you are putting in the universe for me and my family's health and well being. We are receiving it loud and clear.


First, the previous blog posting from last March:

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.

And now portions of the New York Times article:

A dear friend has been battling cancer for a decade or more. Through a grinding mix of chemotherapy, radiation and all the other necessary indignities of oncology, he has lived on, despite dire prognoses to the contrary.

My friend was the sort of college professor students remember fondly: not just inspiring in class but taking a genuine interest in them — in their studies, their progress through life, their fears and hopes. A wide circle of former students count themselves among his lifelong friends; he and his wife have always welcomed a steady stream of visitors to their home.
Though no one could ever prove it, I suspect that one of many ingredients in his longevity has been this flow of people who love him.


Research on the link between relationships and physical health has established that people with rich personal networks — who are married, have close family and friends, are active in social and religious groups — recover more quickly from disease and live longer. But now the emerging field of social neuroscience, the study of how people’s brains entrain as they interact, adds a missing piece to that data.

The most significant finding was the discovery of “mirror neurons,” a widely dispersed class of brain cells that operate like neural WiFi. Mirror neurons track the emotional flow, movement and even intentions of the person we are with, and replicate this sensed state in our own brain by stirring in our brain the same areas active in the other person.
Mirror neurons offer a neural mechanism that explains emotional contagion, the tendency of one person to catch the feelings of another, particularly if strongly expressed. This brain-to-brain link may also account for feelings of rapport, which research finds depend in part on extremely rapid synchronization of people’s posture, vocal pacing and movements as they interact. In short, these brain cells seem to allow the interpersonal orchestration of shifts in physiology.
Such coordination of emotions, cardiovascular reactions or brain states between two people has been studied in mothers with their infants, marital partners arguing and even among people in meetings. Reviewing decades of such data, Lisa M. Diamond and Lisa G. Aspinwall, psychologists at the University of Utah, offer the infelicitous term “a mutually regulating psychobiological unit” to describe the merging of two discrete physiologies into a connected circuit. To the degree that this occurs, Dr. Diamond and Dr. Aspinwall argue, emotional closeness allows the biology of one person to influence that of the other.
John T. Cacioppo, director of the Center for Cognitive and Social Neuroscience at the University of Chicago, makes a parallel proposal: the emotional status of our main relationships has a significant impact on our overall pattern of cardiovascular and neuroendocrine activity. This radically expands the scope of biology and neuroscience from focusing on a single body or brain to looking at the interplay between two at a time. In short, my hostility bumps up your blood pressure, your nurturing love lowers mine. Potentially, we are each other’s biological enemies or allies.

What can I say my friends, but another thank you for all you have done for me and my family. This is a journey like no other and I am so grateful you are there with us.
With much love and gratitude,
Dan

Julia's New Look

IT MAY BE HARD TO BELIEVE BUT.......

Yes, it may be hard to believe, given that it took 1 year to get a response to any chemo regime, but, my numbers continue to go down, even though I haven't had chemo in 4 weeks and underwent a prostate surgery during that same 4 week period. I called in for my myeloma numbers today, from the blood draw on Monday, and my IGG's are now at 1144, down from 1231 in late August!!! Yes!!! I'll interrogate Dr. Rifkin next week when he sees me, but right now I am enjoying the progress even though I can't explain it.

Susan and I shared a bottle of wine tonight and enjoyed the good news, which was such a rarity last year. We toasted our good fortune for having so many good friends and family who cared for us during last year's struggles. May our blessings continue.
Love,
Dan

Post Script: I just heard this on a television program of all things, but liked it. Philosopher Kahlil Gibran wrote: "Out of suffering have emerged the strongest souls; the most massive characters are seared with scars."

WOW!!!!

We have raised $12,750 to date thanks to all of you and many others who may not be bloggers. The Light the Night walk was a great event. We had a beautiful fall evening for the walk and about 20 walkers showed up to walk on my team. The total turnout for the walk was probably in excess of 2000 people, each walking the 2 miles with a lighted balloon. (the furthest I've walked in 2 years!) Thank you to everyone who donated and who walked. It lifted my spirits, and other survivors as well.

Inspired by Thursday night's walk, and wanting to enjoy our beautiful fall weather, I took a 2 1/2 mile walk this morning. I'm feeling quite well, despite the surgery of 2 1/2 weeks ago. My good feelings are no doubt attributable to the absence of any chemo for the past month. The absence of those drugs, and my increased energy, always awaken me to how much those drugs fatigue me. I'm not looking forward to a return to that regime and am hoping that this coming Monday's visit with Dr. Rifkin will bring news of another week off--in the interest of allowing me further time to heal.

I have heard the clamor for Julia's picture, but I can't figure out how to download it onto this site. I will forward it to Ted and ask him to send to his son, Glen, who does all our photo postings.

I will probably get some myeloma numbers later next week, and if so, I'll let you know how my numbers are after this month off from the chemo. Keep your fingers crossed!

Much love to all,
Dan

Post Script: Monday morning: Had my blood drawn for myeloma testing but no visit with the doctor and no chemo. I was advised that Rifkin will see me the end of next week, and make decisions then about when to reinstitute the chemo regime--he wants to give me ample time to heal from surgery. While Susan and I are a bit nervous about being off of chemo for almost 5 weeks, I welcomed the news, as I was really not looking forward to a return of the chemo rollercoaster.

Home From Yet Another Surgery

The prostatectomy took place on Tuesday, although late in the evening due to an unexpectedly long surgery in the operating room ahead of me. Susan and Catherine were waiting for me in my room when I was wheeled in around 10 p.m. The surgery went better than expected, and although we do not yet have the final pathology report back, my surgeon seems optimistic that we got all the cancer (couched in the appropriate disclaimers we lawyers are trained to recognize). I was discharged yesterday morning and Susan and I promptly went for a short walk around the neighborhood. An activity very reminiscent of last summer's multiple hospitalizations and recoveries. One of our neighbors even asked if I had had a relapse, having noticed my slow deliberate pace. Fortunately that was not the case.

I feel surprisingly good after undergoing this 3 1/2 hour surgery. I walked close to a mile this morning and will take a shorter walk this evening. The walks tire me out but I have learned they are the best recovery mechanism available.

The Light the Night Walk is gearing up well. The response has been tremendous. Thank you to everyone who has supported me in this endeavor. I've already rasied over $6,000!!! I am so committed to this because the new drugs are what has saved my life and I know that others will be facing what I faced when I was first diagnosed. Whatever you can do is greatly appreciated.

Oh, and Julia has, in fact, now shaved her head. We have seen pictures....she is still cute. And we get to see her this weekend. She's always been one to push the boundaries so we're not surprised. She makes me smile. My brother Tom thinks it is a great display of self confidence. Yeh, that's one way to look at it. Or another is ......never mind.

I don't know when we'll start the velcade/steroids routine again, but am actually enjoying the clearheadedness I feel after almost 2 weeks without chemo. I'll probably get next week off also, then back to the weekly chemo infusion. Oh well, that's my life. Thanks for all the support through this last surgery. It feels good to have it behind me.

My surgeon just called with the path results: clear at the margins, which means it does not appear the cancer spread beyond the gland that was removed; or the hormone shots I've been getting for the past year caused it to retreat. He'll watch me for a year or so, with PSA (prostate specific antigen) tests of the blood just to make sure.
Love,
Dan

Bloggers--Help Light the Night

Below you will find a fund raising solicitation letter for all my blogger friends. Later this month I am planning on participating in a Light the Night fund raising activity here in Denver to help raise money for research on blood cancers, such as myeloma. Cancer has touched so many of our lives and sadly, as we get older, it seems to happen more frequently. But, the good news is that we are finding more and more cures as well as discovering new drugs to prolong and enhance the lives of cancer patients.

After five failed chemotherapy regimes, including a failed stem cell transplant, this April my blood cancer levels finally started dropping after I started a new drug combination, velcade with decadron (a steroid). Velcade was approved by the FDA only about 18 months ago. Its success in clinical trials was so impressive that it was fast tracked through the approval process, so patients like me could be given a chance to live. Another drug, revlimid, was also approved around the same time and, should the velcade stop working for me, I will likely be put on a revlimid regime. Not all patients respond to these new drugs. We need more research to develop new drugs.

On Thursday, September 28 The Colorado Chapter of The Leukemia and Lymphoma Society is sponsoring a Light the Night Walk in Washington Park in Denver, to raise money for blood cancer research (leukemia, lymphoma, Hodgkins disease and myeloma). My family and I have committed to walk in the event as well as to contribute financially. I am very excited at the prospect of participating in this effort, because a little more than a year ago I could only walk a block, and that required the assistance of a walker.

I am inviting you to walk with me that evening, donate to the cause or do both. A donation of any amount will be greatly appreciated, whether it be $25, $50, $100, $250, $500 or more. You can register to walk and/or to donate by going to my web page which has been set up specifically for this purpose. Go to this site and follow the directions: http://www.active.com/donate/ltnDenver/1785_dpattersonLTN. If you would prefer not to use the credit card pledge, you can instead send checks to me, made payable to The Leukemia & Lymphoma Society. Please send any checks them to me at 145 Garfield St., Denver, CO 80206 so I can present them the night of the walk. Donations are tax deductible. For those interested in walking with my team, my team is called simply, "Dan Patterson's Team" (how unimaginative, I know!)

Thank you so much for considering this worthwhile cause.

Love, Dan

Good Numbers Help Wrap Up a Busy Summer

After a month on the maintenance dose of velcade/steroids the IGGs continue to go down. This week's results show the IGGs at 1231, down from 1338 a month ago. Maintenance isn't just maintaining, its actually driving the numbers down. I also had my first bone density test about 2 weeks ago, to determine whether I was at risk for bone fractures. The results today show my bone density to be essentially normal. My lower back is the worst of the areas tested, but its all fairly good. My orthopedic surgeon was quite surprised by the good results and believes my bone density has improved greatly since last summer when my back collapsed. I guess this test has deprived me of my claim to be fragile, when my daughters try to retaliate for the good natured tickling I like to inflict on them. Everything seems to be on track for the prostatectomy, which is scheduled for September 12th.

This week we had our "Good Bye Eileen" party, to say farewell to Susan's cousin, Eileen Stinson. Eileen treated us all to dinner at one of Denver's fine restaurants. The evening was not only filled with good food, but much laughter. We'll miss Eileen very much as she is truly the 5th member of our family. She arrived at a time when we were mired in the upsets of this disease. Her refreshing stories, big pots of sauce and meatballs, weekly chocolate chip cookies, invitations individually to each of us and together as well added to our continued belief that the worst of times can also be the best of times. Susan's Italian family, including Eileen, as well as Susan's brother Gary, regularly teaches us the meaning of generosity. Eileen's final gift to us was a plaster pig wearing a French beret. The pig is 24 inches high and has a small blackboard for notes. It now sits proudly on the end of our kitchen counter. Eileen's story of trying to get through airport security with "the pig" is hysterical. She was delayed for some time because the security guards believed the pig could be used as a weapon if allowed to be brought on the plane. So, of course, the blackboard attached to the pig now reads, "I am not a weapon."

My brother Tom spent a week with us in early August. This was his 3rd visit this summer and the more we see him, the more we want him to visit. His visit also prompted the visit of a few of his friends who were part of the reunion in early June and who live in Denver. Its nice to keep that connection. Not to be outdone by his younger brother, brother Mike will be here in October.

The days continue to bring ups and downs, but the seesaw nature of this disease seems to be evened out by the knowledge that we have come through 17 months of this struggle. I constantly compare my current situation to where I was a year ago and am so grateful for my improved health and spirits.

Love, Dan

A Veteran of the Chemo Wars

Hello Everyone,
Today is Monday, which means I got my infusion of chemo and steroids--and because it's the first week of the month, I also got Zometa--bone hardening drugs. As I spent the morning in the infusion center (a large room with about 10 recliners for people to sit comfortably and "get infused"), 3 people circulated through the room. Each person displaying a look of deep concern, or worse yet, panic. I usually sit quietly and read and don't get engaged in conversation but for some reason these people wanted to talk. Each one was early in the process and understandbly scared. I felt like the veteran as I gave advice on such mundane topics as the mouthwash to use to reduce mouth sores following transplant, the ways to try to reduce fatigue, the anti nausea drugs that worked best, etc. As I walked out I realized, "I am a survivor." My step lightened.

Not much news on the numbers front. The white and red counts are stable and gradually and steadily rising over the last month or so. That is a good sign. I won't have any myeloma numbers for a couple of more weeks. I am very much looking forward to having next week off from the chemo as I find that, even though I only receive one dose a week now (compared to 2 for the past 7 months) it is still a roller coaster as I get boosted from the steroids early in the week, only to crash by the end of the week. Throw in a sleepless Monday night and the week feels like a trip to Six Flags. But Sundays are good.

Prostate surgery is scheduled for September 12th. My brother Tom tells me it will be a piece of cake given what I've already been through. His was an open surgery, i.e., an 8 inch incision below the navel. Mine will be laproscopic and thus less invasive. Although I'm not looking forward to another visit to the hospital, I am grateful my myeloma treatment has gone well enough that my doctors feel comfortable with proceeding.

Only a couple of more weeks and Julia goes back to school. Life won't be the same around here. She is such a great kid and we've really had a good time this summer. We often find ourselves watching reruns of Jon Stewart's "The Daily Show" late at night when I can't sleep. I laugh hysterically and then tell her how stupid it is. She just laughs at me and the show. Catherine sent me an email today with a lengthy piece explaining the new laws governing pension funds--said she thought it interesting. While I did find it interesting all I could think was, "Catherine, you are such a nerd!" She would agree. Susan continues with her busy life, walking her 8 miles day, keeping us all fed, engulfing us with her love and warmth, and generallykeeping the house running (and clean).

I'll check in after I have some news on the myeloma numbers in a few weeks. Until then, please know we love you all very much and that my continued improving health is due to all of your love and support.

Love Dan

A Short Vacation and Now We Hope to Maintain the Downward Trend

On Monday, Susan and I returned from a fabulous week with our friends Sigun and Joe Coyle in East Hampton. They have a beautiful home, with a pool, that is only minutes from the beach. We spent our days poolside or beachside. Sigun also prepared numerous culinary feasts for us and we spent the evenings eating, drinking Joe's fine wine and talking. It was so good to get away (my first trip out of Colorado in almost 2 years). The trip was also made possible, once again, by Susan's cousin Eileen. Given my back problems I was very reluctant to travel. So Eileen used her frequent flier miles and purchased a first class ticket for me. I used my miles to get one for Susan (didn't have enough for 2 tickets). The trip was fine and I was no worse for the wear when we returned. My, how things have changed. But this questions looms: Does this short visit with the Coyles constitute a vacation if I haven't worked for the past year?

I saw Dr. Rifkin on Monday and have officially gone onto a maintenance schedule. My dosages of velcade and steroids remain the same, but my schedule is now once a week for three weeks, and then the fourth week off. My IGGs are now 1338, down from 1415 about a month ago, and, for an even better perspective, down from 7500 in April 2005. It has been rough at times, but we have made much progress.

The hope now is for the maintenance dosage to be sufficient to at least hold the IGGs if not continue to reduce them. If they hold, then I'll undergo the prostatectomy in mid to late September to get the prostate cancer removed.

I am generally doing well even though I still have the reactions to the steroids: 'roid rage (the family runs for cover on Mondays and Tuesdays) and also the sleeplessness. But all in all I am doing so much better than a year ago that my spirits remain high.

Catherine is enjoying her new job and seems to learning much about finance and investment. May I be the beneficiary of that knowledge! Julia continues to sell coffee in the local coffee shop and both are having a relaxing summer. I think Julia is experiencing some boredom, however. She has been threatening to shave her head, just to see what it feels like. I had that experience only last year, but she doesn't seem satisfied with my verbal description of what it feels like to be bald headed. We'll keep you posted.

Susan is doing well also. She's entertained and fed many visitors this summer. She also continues to make new friends. While in a bookstore in East Hampton she found herself engaged in conversation with two other customers and before we left, she managed to exchange phone numbers with them so they could discuss new books for their respective book clubs. She is a wonder and seems to attract friends more easily than anyone I've ever known.

I do hope that everyone is having as fine a summer as I feel we have enjoyed. My best to all of you. Love, Dan

Greetings from Ireland, New Numbers, a Family Reunion & Happy 4th!

First, a thank you to our good friend Mari Bush who sent the pictures from Ireland. Mari has been sending me hilarious (and some stupid) cards over the past year without fail, along with her latest in music, which I have greatly appreciated. She was recently in Ireland (for about the 25th time--no exaggeration) and sent the Get Well Pictures. How nice that she took the time to send good wishes while traveling through the Emerald Isle. She's a sweetheart. Thank you Mari.

I always feel that I have to start with the numbers report, so here goes: last Thursday received the IGG report from the blood drawn on Monday (June 26--Cates Birthday). IGGs continue their downward trend and are now around 1415 (not sure of precise number). Down from 1605 last cycle. We are in the band of normal ranges for IGGs (700 to 1700 approx.). The goal is not to get them to zero, as IGGs are a kind of antibody and we all need them. I just produce too many of the IGGs, which then crowd out the other antibodies, which makes me vulnerable to other diseases. The mechanism that is producing the IGGs is the myeloma. The excess antibodies also attack the bone as they multiply. I still probably have myeloma (they haven't done the definitive bone marrow biopsy for many months--no complaints here). I get my last velcadel/steroid infusion on Thursday, then 2 weeks off, then Rifkin plans to devise some sort of maintenance schedule to see if lower and less frequent dosages will hold the numbers down. I am constantly reminded of the events of one year ago and marvel at how far I (we) have all come. I was literally unable to walk last 4th of July and entered the hospital on the 7th needing 4 pints of blood, recently diagnosed with 10 or 11 new vertebral compression fractures, and in terrible straits. The anniversary date of this downturn has haunted me as this holiday has drawn near, and I will be glad to get through this time, as it carries such heavy and difficult memories.

The day of the new numbers report my family also arrived for a celebration of my Mom's 80th birthday. Her birthday is actually August 30th, but we planned this a few months ago for a time we thought I would not be in the hospital, and we were right. My brothers, Mike and Tom, my sister Kathy and her husband John, and my mother and her husband Bob Walton, spent the last 4 days in Denver. Activities were a bit more subdued than the reunion of 24 high school classmates, but it was a fine time. Susan, of course, once again hosted a dinner at our house on Thursday night and we spent the evening on the patio enjoying the company and a beautiful Colorado evening (Julia and Catherine also joined us.). The weekend included a museum trip, a family portrait, a trip to the new Tattered Cover Book Store, and a couple of fine dinners at local eateries. Our friend Doris Sharma also baked a delicious chocolate cake, which we inhaled on Saturday night. Mom hardly looks 80 (could pass for mid 60s) and kept up quite well. I felt it was a fine tribute to everyone who has spent so much time here during the past year helping around the house and keeping my spirits up. Susan once again laid the ultimate compliment on the group after they had left: "your family is really nice, Dan." They are and we love them lots.

We plan on spending a quiet 4th of July around the house. No plans but rest and relaxation. May yours be the same. Love to all.
Dan