Happy Thanksgiving

Yesterday's visit to the clinic was uneventful--which is a good thing. My white counts, neutrophils, platelets, potassium, magnesium, hematocrit (red cells) are all where they should be. I'm doing so well that I don't have to return for 10 days, although Dr. Rifkin did give me the option of coming to the clinic this Thursday, Friday, Saturday and Sunday if I wanted. I graciously declined. So we wait for retesting, or as they call it restaging, i.e., testing everything under the sun once again such as bone marrow biopsy, bone scan, much blood work, and a few other niceties. No time scheduled yet for that exercise (last time it took 9 hours but I think it will be shorter this time). I hope it doesn't happen until after the holidays as the process will only bring to the surface the question of how well the transplant worked. Ignorance is bliss right now. I also asked Dr. Rifkin whether I could return to the health club to do light exercise. Request denied on the basis that I am only 38 days old and not yet ready to fend off all the nasties lurking about in the locker room. In addition to my walks (1 mile a day now) I am now lifting weights, but I feel I must clarify as it will give you all some sense of how much this transplant has knocked me back: the month before I was diagnosed last March I was curling 25 pounds per arm. When discharged from the hospital I was able to curl using 2 pounds per arm. I have now graduated to 3 pound weights--a 50% increase but a long long way from 25 pounds. Slow and steady, I know. I will report after my appointment on Dec. 1. Until then I wish you a Happy Thanksgiving.

We are going to our friends, the Richardsons, for Thanksgiving dinner. Chris Richardson and I lived together during law school and he has been an unbelievable friend during this difficult time--another friend who has become a brother over the years. He saw me at my absolute lowest this July and gave Susan and me great help and support during that time, something we will never forget.

Thanksgiving has always been my favorite holiday and this year is no different. I am excited that our 2 girls will be home, we will be sharing the day with good friends, enjoying good food and giving thanks for all those blessings we have received this year. Despite all the difficulties we have faced, we still see ourselves as blessed and will give thanks this Thursday for all the gifts we have in our lives, including all of you. Happy Thankgiving to all. Love, Dan

Portless in Denver

I had my port (Hickman catheter) removed this morning at the hospital (7 a.m. appointment, arrgghhh). It was done under a local anesthetic by the same interventional radiologist who put it in 4 months ago. Quite uneventful and should be healed within a few days. I no longer look like a Christmas tree! These days feel like I am, oh so slowly, returning to some normalcy and it sure feels good. (Howie, I have always considered myself ,"Mr. Common Sense, a Man of the People", so I don't know what you mean by I don't know what is normal.) I commented to Susan over breakfast this morning (3rd time we've eaten out since Wednesday night--making up for the last 6 months) that I thought we were getting along even better than we did before I was diagnosed. Her response: "well, that's because you're nicer Dan." We laughed as I responded, "oh, you haven't changed at all as a result of the last 6 months." Having been forced to confront what is really important in life, it seems we have no ability to argue or even disagree about the smaller things. Or, maybe I'm just nicer, as Suz suggests. Have a great weekend everyone. Love, Dan

P.S. to Jaike: what are you smokin?

Doctor's Visit Leads to First Dinner Out in Months

White counts are steady, potassium is stable, and things are looking good. The Hickman catheter will be removed on Friday morning (under local anesthesia) and only one visit to the clinic next week is scheduled. Dr. Rifkin's parting words to me tonight: go be normal. YES! so, we immediately called for reservations at Elways and were joined by our friend Ted for "dinner out", a concept I had all but forgotten. Steak, baked potato, and salad.--the food real people eat. It was wonderful and so great that Ted, who, like so many of you who have been with us from the beginning, was able to join us. We talked of the ups and downs of the last 7 1/2 months and marveled at so many blessings, like my improving health, like the wide wide circle of friends who have stood by us, and like this blog. Tonight we are very thankful for all that we have been given and know that as long as we focus on the present, the future will take care of itself. Our love to all of you. Dan and Susan

Monday's Visitors and the Doctor's Visit

My cousin, and third brother, Rich Boulger, came through town today and we (my brother Mike and I) had the chance to spend a few hours with him. We, of course, went through some of our favorite childhood memories and caught up on our what our kids are doing. Rich delivered notes for me from each of his 3 kids, introducing themselves and wishing me well. They were very sweet. We promised we would have that wiffle ball game in Chicago as soon as I am feeling better. It was so nice to see Rich as I haven't seen him in at least 5 years, if not longer.

Mike took me to the clinic today; my 4th consecutive day at the clinic. It was a good visit. My doctor thinks I am doing really well, despite my feeling so tired. The 2 days of neupogen shots kicked my white cells way up as hoped. He said I am doing so much better than most people do 30 days after transplant. He also said that it will take at least a couple of months (maybe by Christmas) for me to notice a significant upturn in my energy and probably 6 months to feel like I have recovered most of my energy. I also had many questions for him about my myeloma numbers. (I don't think very quickly these days, so it takes me a few days to come up with questions) His response: don't pay attention to the numbers, it is way too early and you'll just drive yourself crazy trying to make something of them now. He also said that everyone agrees you can't know anything for 60 to 90 days following transplant. So we are readjusting our sights for mid January and plan to spend the next few months just enjoying my slow recovery.

My brother Tom is in Berlin on business and called me to let me know that the latest issue of Newsweek features advances in health care with focus on a man who has multiple myeloma and is now in remission. We can't find the issue so if any of you find it, please let me know the date of the issue, or buy an extra one for us. Thanks.

Mike leaves tomorrow. As with past family visits we put him to work, although less than the last visit. It has been nice to spend time with him, other than in a hospital room as with his last visit. We removed the hospital bed from our bedroom today, after 4 months. Mike helped with the purging and it is so nice to be out of that bed as it feels things are starting to return to normal. As with the other family visits, it seems that Susan just laughs and laughs when they are here. It's good to hear that laugh as things can get (and have gotten) awfully serious around here at times.

This blog continues to amaze me. We now have communications from Paris from our very good friends Sigun and Joe Coyle, as well as the Dakota Kid (is that you Bob T.? Thank you for the nice comments) and Stacey, your note in response to Susan was so nice and reminded us not to lose hope. And I continue to learn of friends who follow the blog closely but don't post comments. We received the nicest gift from a high school friend the other day, who had read of the visit of the statue of the Virgin Mary. She sent us 2 rosaries from Medjagorie, (sp?) which had been blessed there. She or her husband had purchased them in Medj. on their last visit there. Thank you Edna. Susan and I are overwhelmed by the gift. Next visit to the clinic is Wednesday. My doctor is talking about possibly removing my Hickman catheter this week. wouldn't that be nice. Love, Dan

An Ordinary Saturday Morning

It is a beautiful day here, like most Colorado days, and we have just returned from the cancer center where Dan was let out of jail early. We went to breakfast. This is the first time we have gone out in months and it almost felt normal. Then the drive home and I see all sorts of couples taking their walks, sitting with their lattes, or window shopping in Cherry Creek and the realization hitsthat we are not "normal" and I try desperately to hold back the tide.

I always ask Dan if he has told people on the blog how he really is, not the numbers, or the Doc's comments but the real thing. He always say yes and when I read his posting I realize we are often in different spaces. I feel like the voiceover on Desperate Housewives, telling what is going on beneath the surface, the real truth if your will, or the story according to the spouse, caregiver, best friend. Perhaps the real truth is that there are two stories.

I have taken to calling the hospital/cancer center the airport. It just comes out and as I correct myself I have tried to figure out why I continuously say this. Today I was struck by the thought that it is, in fact, like being at the airport. The ennui, the inability to find a comfortable place to sit, the long hours, the terrible food, and the waiting for something to happen,( or the explanation of why we are still grounded). Unfortunately Paris or some equally lovely place is not at the end of this ride.

And so the news this week of the still high myeloma number sent me into a bit of a tailspin. There is so much hope and then the reality hits and you are reeling and using every bit of strength you have to push through it and move on. Dan says little but comments like they can probably get me a few more years make me realize his strength of purpose is often tried and tired; certainly more so than mine. I am merely the watcher, the gatekeeper, the poorly prepared nurse

So back to the beautiful day. There is always hope and ofen a laugh, and more often cherished words from my dear Dan. They keep me going but make no mistake, this is the most difficult thing I've ever done. I sincerely thank all of you for you love and constancy. Happy Saturday, Love, Susan

And from Dan: As for me, I still have tremendous hope and strength of spirit and will continue to refuse to give in to the negative. Yes, this is difficult, the most difficult challenge I have faced in my life. But hope is always there. Just yesterday we were told that my doctor and this cancer center have one of the greatest reputations for survivors of myeloma. There are many many options and treatments still available. You, my friends, have shown me that the world is full of blessings and the glass is always half full. All you have to do is look at it that way. Fortunately for me, I have always seen life that way so this is not too difficult for me. Love, Dan

Neupogen Revisited

Ah, just spent another 2 hours (not 3) at the clinic. Potassium creeping up very slowly. Still have to have IV's although they are giving me less than last week. Also have been given a new drug to help my kidneys retain the potassium. That will resolve in time I'm sure. Platelets continue to rise and are nearly normal. White cell count, on the other hand, fell today from 2.5 on Wed. to 2.1 today. So, I got another neupogen shot and will get another one tomorrow in hopes those shots will kick start my white cell production. So, we're off to the clinic tomorrow morning, Sunday morning and Monday. (Is it time for my sister Kathy to return?--No, my brother Mike will arrive tomorrow so he can accompany me on Sunday and Monday as I still have my driving privileges revoked) I've finally realized there is no normal course of recovery, only individual courses. But, I still continue to feel OK, energy still low but very gradually creeping upwards as well, and no major complications. I was to go off all antibiotics today, but because of the drop in the white count, those prescriptions have been extended a week. Take care everyone, have a nice weekend and I will update you on Monday. Love, Dan

More Numbers

Just returned from the 3 hour visit to the clinic. My platelets are recovering nicely and it looks very much like I will not need a platelet transfusion, which is unusual (not to have one). On the other hand, the white counts still linger at a low level, but not neutropenic. Dr. Rifkin believes the white counts will soon follow the platelets on the upward trend. Potassium continues to be low so I continue to receive the IVs and am eating potassium rich foods. We received the first report of the myeloma numbers post transplant, although very preliminary. They were trending upward before the transplant (around 3000). Today's report is they are at 2440. (these are the Igg numbers that we were tracking throughout my chemo in April, May). Rifkin feels good about the number, we are not so enthused, but we know it is early and the trend is in the right direction. (at some point in late June we had the Iggs at 1100, but that got derailed with all the nonsense I went through at that time with my back and other problems) An increase in my white count might help kill any myeloma remaining, as well. We'll only really know when the bone marrow biopsy is done in a month or two. Next appointment is Friday--more blood work, more potassium.

My brother Mike is arriving this weekend for his 3rd visit since my diagnosis. We always seem to find something for him to do around the house so he isn't bored. It will be nice to see him again and I must say again, my family has been tremendous through this journey. Love to all, Dan

Numbers, Potassium, and Going to the Office

It is four weeks to the day since I was admitted to the hospital and given high dose chemo. Today's clinic visit revealed that my numbers remain about the same. White cells at 2.7, anc (neutrophils) 1.1, but platelets are up to 70. Once I finish with the potassium I should be able to get my catheter out of my chest. I have 2 more visits this week (Wed and Fri) to get IV potassium and blood work. In the meantime I have taken to eating potassium rich foods such as bananas, dried apricots, baked potatoes, etc. All in all my doctor continues to be very pleased with my progress.

Having not "crashed" for 4 or 5 days, I thought another visit to the office might pick up my mental spirits. So Susan packed me a lunch and off I went late this morning for a 1 1/2 visit. Let's see, I looked through some mail, emailed some friends, talked on the phone with some friends, talked with some of my friends in the office, and of course, ate my lunch. I don't have the stamina or concentration to do any real legal work, but at least I went through some familiar motions today and it felt good. We'll see how I feel tomorrow before I decide whether I have another visit in me this week. Next blog posting will be sometime Wednesday. Love, Dan

Friday's VIsit

Another 2 1/2 hours at the clinic today. Can't seem to keep the potassium in me so IV's on a daily basis for awhile. If it continues, we think we'll have Susan learn to do this at home so we don't have to drive to the clinic everyday. Susan always wanted to be a nurse (NOT!), but she is willing to learn. What a sweetheart she is. Speaking of sweethearts, so also is my sister. She left last night. I called her this morning and told her I was back on the daily visits to the clinic and we needed her back. Much to my amazement she said, "well, if you need me, I'll be there." I guess she's forgotten I have a cruel sense of humor. Anyway, I told her to stay home for awhile. My numbers are still doing what they are supposed to, although the white count and neutrophils are still quite low as we wait for the immune system to rebuild. The internal rebuilding effort apparently is the explanation for the exhaustion. It's weird to be so tired from doing nothing (at least on the outside), but I guess the work is invisible to the eye. All in all I continue to do well. Next report will be Monday, probably afternoon. Have a nice weekend everyone. The last few weeks here in Colorado have been fantastic fall weather. Love, Dan

Wednesday's Report and Misc. Musings

In order that my fellow bloggers don't get too disturbed if I don't post a daily note, we have decided that, for the time being, I will post a note on the days that I see the doctor to give you the latest report. I saw Dr. Rifkin today and will be at the clinic again on Friday. Next week I will see him Monday and Thursday (yes!, only 2 visits). His goal is to wean me off the frequent visits and get to once a month. As they say, from his lips to God's ears.

My white cells and neutrophils have dropped, but that is expected (wbc=1.9, anc (absolute neutrophil count)= 1300) MOnday they were 2.9 and 2700. But since I am no longer receiving the neupogen shots, the production of cells is now entirely up to my new immune system--no more stimulants. They are expected to rise within the next week. Platelets went from 16 to 27 and hematocrit (red cells) went from 28 to 30. Both good signs, although the platelets are expected to bounce around a bit. When the platelets hit 50 I can have my "port" or "line" or "hickman catheter" removed. That is a catheter that was placed in my chest in July and has a line that goes directly into a main artery in the heart. It has been used for the drawing of blood, delivery of IV's, chemo, blood, etc, and has allowed me not to be stuck in the arm repeatedly. This port has 3 lines coming out of it, sort of like tassles, each about 4 inches long. Although I have gotten used to it, there are times,I do feel like a Christmas tree with an ornament hanging off me. Sleeping with this hanging out of my chest has been interesting to say the least. I'm looking forward to its removal, as is Susan, as she has had to clean each of the 3 lines daily since July.

Dr. Rifkin will be in Boston this Friday presenting a paper on a clinical trial involving the use of a new drug, Velcade, in patients with MM, who do not obtain complete remission. He told me I might well be a candidate for that clinical trial if we don't obtain remission. My response: Does this mean I can't obtain complete remission? he said no, so I am holding on to that thought. I'm asking you all to stay with me on this one. But, it is nice to know I have a doctor who is on the leading edge of the medicine with this disease. He is also a very nice guy. I am so lucky to have him as my doctor.

My sister's visit has been great. She is such a hard worker, has helped Susan organize her laundry room, has polished all the silver in the house, has "assisted" with meals, has made me lunch daily (I am banned from the kitchen because of bacteria that hangs out there) and has driven me to clinic and waited for hours as I have been infused. This family of mine has been there for me in spades throughout this ordeal.

And finally, I even went down to my office today to see everyone, to sit in my chair in my office, and to show the office to my sister. On one level, I am so ready to be back at it, but I understand it will be months before I can get there. I came home after our visit and had a 2 hour nap. Dan's big day at the office!

I continue to marvel at the staying power of all of you, my friends. We are now 7 months from diagnosis, and if anything, our family of friends has grown. The parade of visitors through the house is constant, the phone calls are never ending, the cards continue to find their way through the mail, and the blog just grows and grows. I see it as a reflection of what wonderful, loving, and caring people you all are and of how lucky I am to have met you and for you to have stayed in my life. Everyone at the clinic is aware of the tremendous support I have and they tell me, in their view, support from family and friends, plus a positive attitude make a huge difference in people's recovery. For that I thank you. Love, Dan

Tuesday Morning

Visited the clinic yesterday and received another IV, had blood drawn and saw my doctor (3 hours). Everything is going well. No more shots. I asked my doctor why I was so exhausted. His response: "Because I hit you with a bus!" hmmm. It feels like that some days. It will take a few months for the energy to return to some semblance of normality, but it is still great to be home. I have now instituted daily short walks to get out of the house, to get fresh air, and to try to help with the fatigue. These next months will undoubtedly teach me some patience. Love, Dan