Saturday, January 31, 2009

Coming Out of the Fog

The last couple of days I've seen an uptick in energy, slept less, and am hoping we are nearing stem cell collection. Blood chemistries were a bit whacked out this week, requiring a couple of transfusions and multiple infusions of potassium and magnesium. I'm told the bone marrow uses those elements to produce cells, so that is probably why mine are depleted. My white cell count seems to be rising, albeit slowly, but I'm hopeful that by next Tuesday or so we'll see a jump and they will want to collect cells, thereby ending the shots in the stomach, which aren't so painful, but I wince every time I'm subjected to it. This morning's nurse said she thought we would definitely be collecting sometime this week. We see the doctor on Monday and I should get an update on the status of the cancer levels and maybe an indication whether I'm likely to have to go through another chemo regime before transplant.

Hair loss is setting in again. Yes, I know, I've had this condition since I was about 26 years old, but clumps of hair are now dropping off and within a couple of weeks the bald dome will reemerge. I'm told that look is now "hot". Can't wait to be "hot"!

Little Rock continues to be Little Rock. We miss Denver and our friends.

Sunday, January 25, 2009

Acclimating to Arkansas

We're coming up on two weeks in Little Rock. Never in my wildest dreams........I resist any temptation to question, but rather just try to stay open to the fact that I am here now. But life does manage to throw some unexpected curves to us on occasion. My brother Mike left this morning, having driven up from Tyler, TX for the weekend to give Julia and Susan a break from the long days at the clinic/hospital. Nice of him to spend his weekend that way. The effects of the chemo continue to slow me down. Even though I've officially been off the chemo bag since Wednesday, apparently the effects take some 4 to 6 days to really show themselves. Mostly I get hit with these waves of fatigue and exhaustion, but other than that, managing it OK. I started growth shots on Thursday that will continue until I've produced enough new stem cells to harvest them for the upcoming transplant. That could happen as early as next weekend. The days at the clinic are mind numbing. So much waiting. We had a 10:30 a.m. appt. with the Dr. on Friday morning. Saw him at 3:30 p.m., having spent the 5 hours in the waiting room and the examination room--waiting. The problem is one created by just too many patients and not enough nursing staff or doctors. But to have all these patients sick with cancer, sitting and waiting for long hours is hard to take. My brother Mike questioned a few people this weekend about this problem, but, although everyone is aware, no solutions seem to be presenting themselves. It's worst when we have to see the doctor---so maybe we just avoid that!!! Not a good solution in my mind. We didn't even get to see Dr. Barlogie on Friday, after 5 hours of waiting, but once Susan and my anger passed, we calmed down and felt pretty good about the doctor we saw, the answers we received to our questions, and the plan going forward. There continues to be no question in my mind that this is the finest myeloma treatment center in the country. The data that they produce each day on each patient is so impressive. This doctor pulled up graphs in the exam room showing the reduction in my IGGs (yes, they're going down), and other pertinent chemistry---all from lab work done that morning. But the waiting does present its challenges for the patient. Days are long, activity is slow, excitement is nil. This is Arkansas!
We love you all,

Wednesday, January 21, 2009

First Round Completed

They disconnected me from my chemo bag today, after 4 days of constant pumping. The worst part wasn't the chemo reaction as much as the stomach shots to prevent blood clots. Some techs were better than others on that technique. I did need a transfusion (2 pints and I'm not talking Guiness) on Monday as my red blood count was plummeting--not a surprise, though. Now we wait for the bone marrow to bottom out, i.e., white cells, and platelets to drop. Then, even starting tomorrow perhaps, I will start receiving growth shots to stimulate stem cell growth for eventual collection of millions of my stem cells. That could occur maybe in 10 days to 2 weeks. Depending on the state of my cancer I'll either go right into the first transplant or get a break of anywhere from a week to a couple of weeks to recover.

The process here is maddening slow but they have such an expert team assembled that we don't resent it. They are inundated with patients and everyone is so committed to the task of caring for them, that we all put up with the inconvenience of waiting. Is that why we're called patients? Dr. Barlogie drives a tough ship. As one of the nurses said, "he works 18 hours a day and expects everyone else to as well, and we do." Can't complain about that.

The burden I fear is greater on Susan and Julia as they wait and wait and wait at the clinic/hospital. How utterly boring. But they are so patient and understanding and every day I become more grateful for their support, as well as Catherine's regular calls to check on us. My brother Mike is driving up from Tyler, TX this Friday to give some relief to my drivers, as once I start the growth shots it will be 2 visits a day to the infusion room.

That's the news from Little Rock. Despite all the waiting things feel like they are moving rapidly. With much gratitude for all your good wishes, thoughts and prayers.

Saturday, January 17, 2009

Hooked Up, Pumped Up, and Out of the Gate

We've spent more time waiting than getting treatment over the last few days, but they've now remedied that. I was hooked up to the 24 hour chemo bag today and will carry that around for 5 days, then we just watch and wait for the blood counts to drop, after which I'll get growth shots to stimulate stem cell production so they can harvest more stem cells for my transplant. We've spent about 7 hours each day at the clinic/hospital the last 2 days. Wears one out. This is a busy place. Saw Dr. Barlogie on Friday. Numbers are way up due to my not having any treatment over the last 2 months. It makes me nervous, but he said not to be concerned, we'll knock it down. So off we go. The protocol remains the same. We're settling into a nice condo we've rented with a nice view of the river and the city, including the Clinton library (I know this makes my conservative friends cringe). I've taught Julia Backgammon and she says she is now ready to take on any old men who might want to play--insinuating this is an old man's game. Well it wasn't when I learned it 30 years ago! Cate calls every night to check on us. She's so sweet and we all miss her, as she does us. I'll have to get my skype set up so we can do some face to face conversations. That's the state of affairs here in Little Rock. Thank you everyone for your cards, emails, calls, prayers and good wishes. We are very grateful for the support of all our family and friends.

Wednesday, January 14, 2009

Wednesday morning downtown Little Rock

Wandering about looking for a place to buy the New York Times and some sausage. Traffic feels like Denver on a Sunday morning. Slow. The local liquor store carries the Times, but only receives 2 copies at 8 a.m. Too late for that. I guess we'll have to line up outside the door in the morning, waiting with the others who await the opening in order to buy their MD 20/20 or other high class alcohol. Why sausage? Limited diet today--only protein until noon, then nothing but water for 6 hours in advance of the PET scan this evening. Bone marrow biopsy at 7:45 a.m. tomorrow, then meeting with Dr. Barlogie on Friday morning. If all is in order, I will then have my port installed in my artery to facilitate the drawing of blood or administration of IV drugs. Soon after I think they plan to harvest my stem cells, before they destroy the bone marrow with the chemo. I guess you could say we're off and running. Stay tuned.

Monday, January 12, 2009

Winter in Little Rock

Susan and Julia have arrived in Little Rock and are now in the apartment we have leased for our stay. I leave in the morning and start with more testing on Wednesday and Thursday. I see Dr. Barlogie on Friday morning and expect to get the green light to proceed with the treatment. I've tried not to think about it--just taking things one day at a time.

Thanks to many of my lawyer friends the cupboards in our new apartment were stocked with food when Susan and Julia arrived. I have learned that John Sadwith once again went out on a fund raising campaign and accumulated funds to help us with incidentals during our stay in Little Rock. I continue to be humbled by the generosity of so many people. Julia will be staying with us for a little more than 3 weeks, then returns to school. She was able to skip a block of classes since she will have accumulated enough credits to graduate in May. Yay!

Our address in Little Rock is: 300 E. Third, #1002, Little Rock, AR 72201. We will stay in touch via the blog, so check in often, post your comments (if you can remember how to do that), and keep saying those prayers---they've carried us a long way.

With much love and gratitude,