Hello, my name is Mary. It has been 10 days since my last post. Please forgive me in advance for any grammatical errors or odd paragraph placements, as I am typing this on the heels of pretending to be Buzz Lightyear and fly around the house away from Baymax, so that I don’t “die from the lasers and power fist”, and after taking a pain pill for my aching pancreas.
First, I would like to say that I had a great time celebrating my birthday at La Fiesta–my fave restaurant, in which I indulged in not one, but two, glorious margaritas in light of my good PET scan (again, knock on wood). The day after my birthday, I had a lovely 6 hour chemo drip. (Initially they were going to use an oral chemo pill, but decided on another drug, combined with my usual Rituximab, that is very similar to the Cisplatin–the one causing my hearing loss and tinnitus–but which causes temporary neuropathy from cold exposure. Honestly, I tolerated the chemo probably the best out of any that I’ve had. The only side effect was the neuropathy as mentioned above, which wasn’t all too terrible, really. More-so just annoying). The following night, I met my wonderful friends for dinner (yup! We went out twice in one week!!!! that is totally a record!) and overall had a great weekend.
On Tuesday the 24th, I participated in a remembrance/awareness walk for Aliza Sherman, the mother of my new friend Jen, who sadly was murdered in downtown Cleveland 2 years ago. It was so sad, but was a wonderful tribute to Aliza and her family. There was a really nice turnout, even though it was freezing cold. Please note, anyone from the Cleveland area reading my blog, there is still a reward for any information regarding Aliza’s death. http://www.cleveland.com/metro/index.ssf/2015/03/grand_jury_hearing_evidence_in_1.html#incart_m-rpt-1
Had a great meet-up with my Gang last Wednesday too! Also a reminder that enrollment to the gang is still open. If you’re just looking for a little girl time and some laughs on a random week night? You’ve come to the right place. Must like 80s movies and music. Must also like beer/wine and mini vans. Those are the only requirements.
Yesterday, the 27th, was my dear friend Kris’ birthday. It’s sad and hard to believe that she celebrated it in heaven, but I’m sure she is eating all the chocolates on all the days. She probably loved chocolate more than anyone I’ve ever known, and always thought I was a total weirdo because I am not really a big fan of chocolate in general. Today I got to see her kids (who look just like her!), her dad, dad’s girlfriend, and her best friend. I always love seeing them, and getting big Claire hugs! Makes me feel like she’s still here.
And now for the biggest news…….I will no longer be a patient at MD Anderson.
This decision came after numerous conversations, questions, advice and prayers. It wasn’t an easy one to make. Today, we found out for sure, that I will be able to have the donor transplant here in Cleveland, at Seidman 🙂 Our concerns of having the transplant here vs. Anderson, were mostly ones relating to experience. Anderson sees an average of about 900 allo (donor) transplants in stage IV per year, whereas Seidman sees about 90-100 both auto (self) and allo transplants annually, in all stages. That being said, I recently found out that the new stem cell oncologist at Seidman came from MD Anderson, and actually trained my oncologist there! Upon knowing that, Derek and I felt 100% more confident. My current oncologist here said that the standard of care would be the same at either location, unless I were part of a clinical trial (which I am not). So after weighing all the pros and cons, I will be starting my preparation for transplant next week, as they will contact my donor matches from the National Donor Registry.
All of that is also combined with the fact that Anderson by FAR has the WORST communication ever!! Both myself as well as my oncologist here have been trying to contact my doctors in Houston following my chemo last Friday to determine what the plan is–do I head to Houston for the transplant? Stay here for more chemo? Have another round of chemo there? Should we try again to find an apartment? etc etc–all of these questions went unanswered. Not only unanswered, but the responses I did receive when attempting to contact my doctors in Houston, were from secretaries of the docs, who provided either no information, or incorrect information. Neither of which was helpful. I mean it is my life we are talking about here, and to not even communicate with me that you have a plan in place? For my doctors here in Cleveland to STILL be waiting for PET scan results to be sent to them, since the beginning of February? Well that my friends is RIDIC. I don’t want to say that my numerous trips to Houston were all for nothing, however. Without having gone, I would never have known that my cancer transformed into the more aggressive B cell, and totally could be dead right now. Not to mention at the time, my previous stem cell doctor from home did not want to do an allo transplant because she believed it wouldn’t work. I felt backed into a corner. (The new doc I will be seeing was not yet there).
–Oh ya, and I wouldn’t be $22,000 in debt AFTER insurance, so Thanks MD Anderson!! Thumbs up, assholes.
For the past few years, I have heard that a positive attitude means everything. I have tried my best to always see the positives in any given situation. I mean shit, I have a whole blog stocked full of pros and cons of having cancer/chemo etc al. Last year, when I had my auto transplant, I really tried to remain as positive as I could, and many people told me how miraculous it was that I was able to leave the hospital and go home so quickly. In large part, this was because I had such a strong support system outside the hospital (but near enough to visit regualarily), as well as inside the hospital. I have known the nursing staff on the 3rd floor of Seidman now for 3 years. In that time, they have not only become my caregivers, but have also become my friends. There were certainly days where I didn’t feel like getting out of bed, but they made me. They encouraged me, cried with me, laughed with me, and hung out with me when I was lonely. I would never have had that in Houston. So both emotionally, and obviously financially, we feel so incredibly lucky to be able to have the transplant here in Cleveland, and to have such an amazing doc (if it can’t be Dr C!), who is really on top of things, and who is trying to get things moving as quickly as possible.
These past 5 months have been such a whirl wind of ups and downs. I’m going to die–I’m maybe going to live–I’m going to live for a few years–prognosis unknown. All the while, the people in my life have been so supportive and I am eternally grateful for that. So here we go again, folks! Time to get ready for transplant. I am not sure of the exact plan yet, but I know I will have chemo next week, my donors will be contacted, and I will be prepped for transplant with numerous exams, labs, etc. The chemo for the allo transplant sucks ass from my understanding–I will lose a lot of weight, and be very very sick. I have been told to expect to be inpatient between 30-45 days, and to also expect some adverse reactions (graft-host disease) following transplant. All of this is totally fine by me. Know why? Cause Fuck you, cancer. That’s why!
Let’s get this party started.