When I asked Dr. Gertz about the Revlimid therapy (maintenance chemo) that I'm on, he said that even if I did have SMM I wouldn't be considered high risk and they would not have me on maintenance chemo. He said something to the effect of "there is no basis in the literature for you to be on Revlimid but I can understand a physician's intellectual leap to think it would be appropriate." Translating the physician-ese, I think that says, "There aren't any studies that say its effective but your doctor's usage is logical."
The best news was when I asked him if I could expect a durable, long-term remission. Technically, Amyloidosis is incurable and the best outcome is this durable, long-term remission. As I've said to many people, I don't need a cure, a 30-year remission is as good as a cure for me. Dr. Gertz said that it would be reasonable for me to expect that and he didn't see anything to indicate it could not be achieved. Now, 30 years is beyond what's expected but with the treatment advances that have been made recently and new ones currently in the works, I really believe it's possible.
When I booked the appointment, the Mayo rep told me to plan to spend 2 days there in case they needed additional tests. I didn't need any additional tests. That was another confirmation of the expertise of my local physician. My medical record from Ohio State had all the information Dr. Gertz needed to evaluate my case.
My appointment was at 8am on Monday. I was back in the exam room shortly after 8 and Dr. Gertz came in around 8:15 wearing a nice pinstripe suit, white shirt and red tie. It was nice that it was just him, no fellows, no medical entourage. I love contributing to physician education and training but one on one time with an expert physician is a wonderful luxury. The exam room looked like it was straight out of the 40s or 50s, in a cool way, not a run-down way. The exam table was this cool, retro looking wooden table. There was natural wood wainscoting around the room and one wall featured Dr. Gertz' diplomas, awards and some artwork. Seemed like it was combo exam room and office for him.
I brought my 400 page medical record from Ohio State as instructed by Mayo. As I lugged the tome around with me, clutching it like Smeagol clutched his precious ring, I wondered how much of it he would actually review...or would he have some fellow do the data mining. He came into the room, introduced himself and began reviewing my record as I sat there. I kid you not, the man reviewed each and every page of this record.
Some pages he just scanned and some he spent a lot of time on. He circled and underlined items and made lots of notes on another page. At one point, he pulled up the x-rays from my myeloma survey (basically an x-ray of every bone in my body done when I was first diagnosed) looking at the spots the radiologist identified as possible lesions...a sign of myeloma. He told me that I didn't have any lesions.
I was impressed with how thorough he was. I changed into a gown and he examined me doing the usual heart and lung physical exam and then he spent some time on my liver. He was making his notes with a Mont Blanc ball point pen. While he was examining my liver he asked if it was ok for him to make some marks on my abdomen and I obliged, of course, so he proceeded to draw some lines with his nice pen. I kinda wanted to ask him to autograph my belly while he was there. I also resisted the temptation to take a selfie with him despite my friend's challenge to do it. I thought it might make the relationship a bit too informal at the start.
He agrees with Dr. Efebera's assessment that my liver may never return to normal size but it will reduce over time. He said my kidneys are showing good recovery and my liver function tests show recovery even if it is still significantly hardened and enlarged.
He spent about 1 hour and 15 minutes with me and answered every question I had. His calm and confident demeanor was wonderful and he was so thorough in all his answers.
The best part was that I was done after that. I didn't need the 2 days so I called the airline and changed my reservation so I could return that night. (And its fortunate that I did because my original flight out of Rochester was cancelled so if I had stayed with my original travel plans, I would have had to spend an extra day.)
While I was there, I got to meet Joanne, another Amyloidosis patient who is there for her stem cell transplant. We met for coffee on Sunday and it was great to meet someone else fighting the same fight. Her attitude reminds me a lot of my own and it was encouraging to meet another person who fully expects to beat this disease. On Monday, she was getting her stem cells harvested and I stopped by for a visit. I was there as they finished the harvesting and her husband took a picture of us posing with the magic potion that will send her into remission.
The trip was a great way to close out a crazy 2013. (You can see more photos from the trip here.) When I look back on the year, I am amazed at the roller coaster. Yes, I lost my father and father-in-law; yes, I was diagnosed with and treated for a rare, incurable blood disorder; and yes, at each step of the way felt the love of God and so many friends and family members. While the diagnosis was shocking, I was on the path to treatment three days after diagnosis and felt the peace and confidence from God the day after I was diagnosed. I am so fortunate to have expert care available locally and have a physician who is just as caring as she is knowledgeable. Check out this video of Dr. Efebera for some insight.
Yes, I had three weeks of chemo prior to my month long hospitalization but the timing worked out so I could go on our family ski trip between the chemo and admission. I still can't believe what a blessing it was that I had the strength (limited as it was) to ski every morning we were in Colorado returning home 9 days before my admission.
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I was also able to attend the Fleetwood Mac concert with my daughter and son-in-law, Amy and Sean, and my dear friends Allyn and Jasper on April 4, four days before my admission. Yes it was a challenge due to my abdominal swelling and edema in my legs but I did it and really enjoyed it.
Yes, I missed all of Claire's freshman lacrosse season in which she was the second leading scorer on her team and made 1st team all-conference and second team all-district. But, since Alan was off work on Family Medical Leave, he was able to attend all of them which was a rare treat since his work schedule makes it challenging for him to attend her games. The board for the lacrosse booster association made a photo book for me with lots of pictures and her stats from the season. They gave it to me at the banquet on May 22 which was my first outing after getting out of the hospital. Yes I needed a wheelchair but I made it.
Yes, I had a month-long hospitalization and two months of convalescence but the expressions of love and support from family, friends and coworkers was innumerable. Visits, gifts, cards, prayer, positive vibes, meals, milkshakes, encouragement....so many expressions of love that I still get teary-eyed when I think about it. Yes, it was a scary time but it was filled with so much love.
The second half of the year was an ongoing progression toward normalcy. Even though I was still recovering, I was able to do a lot of "normal things" like:
- travel to Claire's lacrosse tournaments in Virginia and New Jersey in June and July (and I didn't need the wheelchair or walker with seat that the physical therapist thought I might need)
- enjoy visits from several dear friends--Allyn and Jasper who came up from Virginia, my college roomie Deb before she moved to Mexico and my former boss Monica who lives in Australia but was in Ohio visiting family
- attend the wedding of Allyn and Jasper's son in California in August (and eat some Cronuts! Thanks for the reminder, Jasper)
- go to Cedar Point for 2 days. We drove up at 7am on Saturday and I stayed at the park until it closed at 10pm (with one little nap in the afternoon--Al took one, too.) I learned how to pull myself out of a fainting spell during the first drop on this roller coaster when we were in the front row and I wanted to do the entire ride with my hands up. Underestimated the effect of the diuretics I was taking at the time and started to faint but pulled myself out of it. My new trick I learned from my illness.
- take Claire on a lacrosse recruiting visit to San Diego in September
- attend a few days of the President's Cup golf tournament in October with Allyn and Jasper
- attend the Teradata Partners Conference in Dallas in October for the entire week and was able to meet all my committee obligations
- take Claire and a teammate to a lacrosse tournament in South Carolina in October (without Alan)
- take a business trip to United Healthcare in November to discuss their challenges in using customer data (somewhat ironic since they're my health insurance company. I did keep the card for their Chief Customer Officer...just in case)
- spend a weekend baking Christmas cookies at Cookiepalooza with my sisters
- hike 10 miles during our Thanksgiving trip to Hocking Hills
- visit Allyn and Jasper in Blacksburg for Claire's annual gingerbread making and drive back in an ice storm (without Alan)
- go to the Mayo Clinic.
Tomorrow, I will have my usual White Star champagne with strawberries and the black-eye peas that are currently cooking in the crockpot. The black-eye peas are a southern tradition. They're supposed to bring good luck but I don't think I'll need it.
3 comments:
Kathy, you are an inspiration! We agree that Dr. Gertz is really amazing. Here's to a healthy 2014! Carole Harber
Thank you Kathy!!! I agree with leaving 2013 in the past. Let's move forward this year with unyielding power. One day, we will look back and laugh in face of 2013 over something cold and frothy.
Kathy - Cried a lot as I read this awesome recount of your year. I worked on a visualization workbook this week, and one of the exercises was to write down every negative emotion or limitation I felt in the way of my goals. I realized that, even though I wanted to be well, I was still in the mindset of someone who was ill. I decided to work with the affirmation, "I am a healthy & vibrant person" to start off this year. It seems like you're going through this on a greater scale, affirming your own health in 2014. Thanks for the inspiration as always!
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