Our Visit to Duke's Transplant Center...

Yesterday was the day that we have been anticipating for the past several weeks as we traveled to Durham, NC to visit Duke's Adult Bone Marrow Transplant Center. I think in an earlier blog, I mistakenly wrote that it was a two hour drive, but I was wrong - it was three hours each way. It was quite the day, but we were fortunate that Brad's (twin) brother Chad, along with his Mom and Dad were all able to be part of the "experience."

I do use the word experience intentionally because this isn't something you emotionally prepare for. I mean, you think you're prepared for the visit, until you walk through the first set of doors where one is promptly greeted by a hand washing station that is used before physically entering the facility. Across from the hand washing station is a cabinet filled with face masks, that everybody must wear and then depending on whether you're coming to see somebody who is being treated, the extra precaution of rubber gloves and sanitary gowns to be worn over one's clothing. It was immediately sobering to have such strong visual reminders that of those visiting or being treated at the facility, many already have or will have in their future, tremendously diminished immune systems.

Because the weather here has been so icy/snowy, we left for our 10:30 appointment at 5:00am. Brad was supposed to be there at 9:30 to get his registration taken care of. Well, we arrived around 8:15am - yep, in PLENTY of time, even with the yucky weather. Because so many folks cancelled their appointments due to the weather, Brad was able to get in earlier, which was great! In all, it took us about 41/2 hours for the complete consultation.

We spent time with a Financial Counselor who outlined some of Brad's basic insurance coverage benefits regarding the transplant and indicated that should Brad choose Duke as his transplant site, he would have to "relocate" to Durham for at least 6 weeks, live within 5 miles of the hospital and have a 24 hour a day caregiver to live with him once he was moved into the hospital's preferred housing sites for their patients. It was another eye-opening experience. It wasn't that the information being shared was new to us, I think it was just more difficult to hear because it made things seem more real.

After meeting with the Financial Counselor, Brad was whisked away to have his vitals taken, etc... by a wonderful woman who immediately picked up on Brad's sense of humor. She made the comment to me that I must have my hands full with him being such a "firecracker." It doesn't matter where we are or what is happening, Brad's true personality always shines through. It's part of what I love about him so much!

After having the vitals done, Brad and I were brought to a small room where we would spend our remaining time of the appointment. We got to meet Judith, Brad's Clinical Social Worker, who spent time reviewing Brad's family history, his current support system, finding out his likes/dislikes, how he manages his stress, how he is handling his diagnosis, etc... She also asked many of the same questions of me. Yep, I cried. I know, for those who have been reading along you must be asking yourself, "does Sandy really spend this much time crying?" LOL...lately, yes! UGH.

Judith encouraged us to spend time putting together an advanced directive (living will) since that is not something we currently have in place. She also spent time talking to us about the financial stress that comes along with such a difficult diagnosis and a few resources we may be able to obtain through the Leukemia and Lymphoma Society. We talked about Avery and some of the behavioral challenges he has been having. Judith reassured us that his behavior is very consistent with children handling the diagnosis and that his reactions are oftentimes a child's way of dealing with his/her fears. This wasn't a shocker because of some of the information we have found on the American Cancer Society's website, but again, it was another confirmation for us.

After we finished with Judith, our next meeting was with Dr. Rizzieri, the big dog, and the person we were the most anxious to see with the hope that he would have some answers and a plan for us. Something that is cool is that in each of the rooms, there is a tape recorder so that when the Dr. comes in, the patient records all of the information the Dr. says since so much of it is difficult to retain. Each patient then leaves with a cassette tape with exactly what the Dr. said about the his/her diagnosis. I wonder how many patients still have easy access to a cassette player? Lucky for us, we're not the most technologically advanced family and still have two of them!

Dr. Rizzieri started off by saying that in Brad's case there are no immediate emergencies and that we have three goals to obtain in his treatment plan.
Goal 1: To control Brad's lymphoma.
Goal 2: To ensure a long quality of life for Brad
Goal 3: To maybe find a cure.

Goal 3 was the one I was fixated on. Maybe find a cure was confusing, because we were under the impression that a transplant was the only way to cure his lymphoma. Come to find out, a transplant is not always a cure. A transplant comes with so many risks that we hadn't really given thought to (at least in real conversation). There's always a fleeting thought or the disclaimer of potential death that grabs your attention when you spend time researching, but when the Dr. tells you that a little over 30% of patients don't make it through the transplant (when it is an autologous transplant - using the patient's own marrow), it really makes you rethink your life AND your treatment plan. Although the death rates are significantly lower (nearly cut in half) for those with an allogeneic transplant (using the marrow of a donor), the stats were scary and alarming.

Dr. Rizzieri spent time talking about 5 different options for therapy:
Option 1: Chemotherapy (there are about 7-8 types to choose from)
Option 2: Chemo + an antibody called Rituxan to help attack the cancer directly
Option 3: Using the Rituxan antibody alone (often good for patients with a poor quality of life)
Option 4: Radiation
Option 5: Bone Marrow Transplant

Although we were at Duke to obtain information about the transplant and Dr. Rizzieri said we could choose which option we wanted, we were encouraged to try other treatment methods before considering the transplant in order to evaluate how aggressive Brad's specific lymphoma is. Since he is currently listed as Stage 3 (which indicates where in his body the cancer is located - Stage 3 means it is above and below the diaphragm, but NOT in the marrow yet), but Grade 1 (how slow the cancer is developing). Brad currently has the most slow developing lymphoma. The big question is how long will it take Brad to relapse once he goes into remission from whatever treatment method is finally selected. If Brad relapses within 2 years, the Docs can identify that his cancer is more aggressive than what they know right now and either put him through a stronger chemotherapy or move forward with the transplant. Knowing that Brad will indeed require a transplant at some time in the future (this was also confirmed by Dr. Rizzieri), Brad's brothers are moving forward to determine whether or not they may be a family match, raising the opportunity for a successful transplant and reducing Brad's risks.

Brad has decided to move forward with the chemotherapy and antibody mixture. After speaking with Dr. Fintel yesterday afternoon, it currently looks like it will be a regimen known as R-CHOP. This is a common treatment method for follicular lymphoma and is quite aggressive. Brad and Dr. Fintel discussed him taking 6 rounds of chemo and each round is a 21 day cycle, which would take Brad into June/July time frame. Dr. Fintel heads out of town tomorrow and will not be back in the office until February 15th. Brad will see him that afternoon and we're expecting that chemo may start by the end of the month. The risks that Brad has been prepped for include: hair loss (not a big deal for Brad), vomiting, nausea, being tired, body numbness and at risk for infections.

I ask for your prayers not only for Brad and Avery right now, but for prayers of strength for me. Although I feel pretty "ok" most days, I'm really struggling with my feelings of being an inadequate employee, wife and "mom" (even if I am only a step-mom) right now. My emotions get the best of me often and I need all the strength I can find. I know it's in me, but I need to share it with Brad, Avery and the Y better than I have been, while also finding a personal balance for myself so that I can stay healthy through all of this.

I apologize that this is so lengthy today - there's just so much to share and I know several of you have been anxious to hear the update. Thanks for all the wonderful thoughts and messages you have been sending our way.

Love,
Sandy