It has been awhile since we’ve chatted. There hasn’t really been much to tell you about other than the two days of snow fall last week that closed schools and some businesses here in North Texas. Having spent the majority of our careers up North, we smile at how little snow it takes to shut things down here.
When we lived in Maine we had so much snow we had to call in a back hoe to take the top layer of snow off the sides of our driveway so it wouldn’t collapse on us. I won’t bore you with our snow stories from Michigan, Pennsylvania, Nebraska and Washington State.
Today it was 80 degrees for a high today(yep the snow melted!) and a beautiful day to travel to Dallas for the consultation with Dr. Collins and his team regarding Doug’s bone marrow/stem cell transplant (hereafter referenced as I write simply transplant).
His appointment was at 1 p.m. at the University of Texas Southwestern Medical Center’s (UTSWMC) Hematopoietic Stem Cell Transplantation Program in Dallas. For those of you who have flown into Love Field in Dallas on Southwest Airlines, the medical district of Dallas is in that vicinity. The complex is HUGE and really a city within a city comprised of many buildings. We are lucky to live so close to such specialized services.
Dr. Collin’s office, lab and clinic is in the Seay Building named after a Dallas couple who have given more than 35 million dollars to UTSW and Southwestern Medical Foundation as well as to other hospitals in Texas. The structure is stunning. The info sheet says that the building houses some of "the most ambitious research and clinical programs in the world". You even have to use valet parking. There is no other option—and patients don’t receive any validation sticker either.
The moment we walked into the glassed entrance we gasped at the largest and most beautiful Chihuly blown glass structure in brilliant red-orange. Its platform is a black granite water bed. We knew it was a Chihuly because we were privileged to see some of Dale Chihuly’s work when it was on tour several years ago in Atlanta thanks to my cousin and his wife who live there. Little did we dream then how much his art would come to mean to us now.
You can get a taste at http://www.chihuly.com/ and actually view what I can’t describe in words in the entrance of the Seay Building http://www.chihuly.com/installations/public/Art/seaytowerB.html According to the description the receptionist in the lobby gave us, the tower includes 1,100 hand-blown glass elements which were flown from Mr. Chihuly's workshop in Seattle, Washington and assembled on-site in the Seay Building.
The first stop we made upstairs was to see the receptionist. Much of the pre-registration was done via Internet and mail. Then on to Dr. Collin’s lab for another blood draw. After waiting only a few minutes we were escorted through a room with the now-familiar chemo chairs (with patients receiving treatment) then on into a room where Doug’s “vital” signs were taken. Afterwards that gentleman took us to a room with the name plate “Biopsy” on it. Nothing had been said about having a biopsy today. We were told Dr. Collins would be in to see us.
Providentially for him Doug spied a copy of “Flying” magazine on the ledge. Those of you who don’t know it, Doug has a private pilot’s license that is now out of date. He once co-owned a small plane with a buddy when we lived in Santa Barbara, California, when we had no children and when he could afford airplane fuel. Doug would let the Flying magazine subscriptions he didn’t have time to read pile up with other journals. When it was time for some conference meeting he’d take them along to read!! This was before computers and the type of things young ministers did back then when bored at the type of meetings Doug now hosts as part of his job!
We learned that Dr. Collins is older than he looks. He took his cancer training at University of California Los Angeles. His clinic only deals with blood disorder cancers.
He did a brief examination and asked Doug some questions. He told us he needed to gather more of Doug’s previous test results and talk again with Dr. Mandell to be sure they are reading off the same page. Then he launched in to a very simple explanation of what a transplant for Multiple Myeloma entails.
He noted that from the records it looked like at time of diagnosis Doug had been very ill but up until that time had been in general good health except for Asthma. He noted Doug has responded very well to the treatment he has been given from Dr. Mandell. (They know each other which is good.) Doug agreed and told Dr. Collins he has been to work at his office for the last month and feels the best he has felt in the past 5 months.
Dr. Collins said the first step they’ll do is a total work up to be sure all the organs of Doug’s body can tolerate the heavy dose of chemo. This will take several trips back to UTSWMC for the various tests. He didn’t expect any problems and said Doug looked like a good candidate for the harvest and return of his own stem cells, not a donors. That is good news!
After the tests Doug will have a central line, Neostar catheter, installed. It is a flexible tube that is inserted into a large vein on the right side of his chest that leaves the body as one tube but with three branches. The line allows the medical team to give large amounts of fluid, to withdraw blood as well as administer the chemo drug. They also use the catheter to collect the peripheral blood stem cells before transplant and return them after.
A surgeon puts in the line in the operating room under local “sleepy drugs” like those for a colonoscopy. Then Doug will spend the day in day surgery clinic for up to six hours.
The next time goes back he'll be given shots to stimulate the stem cells and when enough are harvested they are frozen. This can take 3-5 sessions with one 4 hour session per day. He doesn't loose blood--they just cycle it in and out of his body. During this "harvest" time Doug will drive the 1 hour from our home to the clinic and back as an out patient. Enough stem cells will be kept frozen to do a second transplant should that be needed in the future.
After his catheter is installed the transplant—which basically is the one-time high level dose of chemo-- the heaviest doses of chemo he’ll have received to date --may be done in one of the clinic chairs!! This was a surprise. The chemo dosage is given within 15-30 minutes time-frame but along with other liquids, anti nausea drugs, etc. the entire process takes longer. Overall this process is nothing as we had imagined it. The goal is to slam the cancer cells so they can not be recognized. He will probably loose his hair this time….
Then they will monitor Doug closely every day for infection. He will not be producing his own blood. He’ll probably need one or more blood transfusions. He won't feel good!!!! Two days after the chemo, Doug’s stem cells are unfrozen and reentered into his blood just as they were harvested out of it through his Neostar catheter attached to the machine that does the work. The next 10 days are critical and he will be given antibiotics to ward off infection.
During the time he may be an outpatient or spend part of the time hospitalized. They can arrange for us to stay in an apartment 2 blocks away because we live too far to be on alert during the crucial days when he stops making his own blood before the stems cells kick in again (not a medical term, but you get the picture) and start working normally. When Doug needs to be hospitalized it will be on a special unit with specialized care and a special air filtration system. He is not to have visitors and probably wouldn’t feel like it anyway but if I want to stay I was told there is a “cot” in the room.
I told Dr. Collins I’d be more than glad to visit him in the hospital and not feel responsible if his fever spikes, etc. Doug does not want me to sleep on a cot in his room so I’m announcing this right now that at his request I will probably honor it for my health’s sake. Have you ever tried to get sleep in a hospital??? Dr. Collins said the team will keep a careful watch on him always. I can stay but it is not necessary.
Doug will be under Dr. Collins team's care for about 6 weeks and then returned to Dr. Mandell here in Fort Worth for follow-up care. The actually transplant will probably take place the first of May.
Currently they can’t sell the transplant process as a cure but remission is where no cancer is visible in any test. Dr. Collins encouraged us when he said that currently there is so many advances in research that they like to have patients think of myeloma as a chronic disease that has to be maintained and monitored. With Multiple Myeloma the combinations of therapies and new drugs in clinical trials is giving encouraging results and moving rapidly as far as science and medicine is concerned.
We know that the transplant process is not as simple as Dr. Collins made it sound. We know it won't be easy. It is, however, a relief to know what is ahead and in many ways we were encouraged by what we learned today.
