Everyone told me, everyone I spoke with said it would be a different world, a kind and caring place, but I was still hesitant. I had such a negative experience in Pittsburgh I just could not wrap my brain around treatment and appointments that revolve around people who are kind, considerate, and caring. Well guess what? You all were right. Two weeks ago today I walked through the doors of Cleveland Clinic, prepared to put Pittsburgh behind me, and start fresh. Upon entering the building a person was standing there with a Greyhound as a greeter, well they had me there with the dog. Then in another area there was a woman playing the violin to a child who was enthralled at the sound. There were other things going on, people asking if we needed help, smiles support, it was amazing. We went to the check in desk and asked where we needed to go for the appointment. Instead of giving us a map or telling us how to get there, a man walked up and said, I will take you to that office, and he did. We were truly in awe. In the waiting room there were computers, game systems, and kid friendly places, of course my son went straight for the computers, and I double checked that they were blocks on them for content (I know my son). We sat for about 15 minutes, then really I started my journey, they took me to the lab, there were smiles, questions, laughter; then off to the vital collection area, more smiles and laughter; then to the room where I would talk to the doctor. Her nurse came in first, spent quite a bit of time with family history, symptoms, previous test results, and what I was looking for at Cleveland Clinic. Then I met a social worker, a research coordinator who requested a sample of my bone marrow while the procedure was done for research, and after all of these people, the doctor. She came in with a smile on her face, she reviewed my records, and ask if I was ready for the BMB. Cleveland has a bit different procedure there, they do the BMB until it is clean, and then they do PCR testing. It is their opinion this is a much better way to see how the CML is responding to the treatment. The doctor spent over an hour with us, asking questions, talking about options, answering questions, mentioning that transplant word, but only as a last resort. That was refreshing to hear, in Pittsburgh that was the main focus no matter how well I was doing with my results. I then was prepared for the BMB. this alone was a different experience. I have had 3, well 2 that were incomplete, and 1 in Pittsburgh that was fairly brutal for the actual procedure. Here I was given a muscle relaxer, asked if I wanted stronger pain pills, and every aspect was talked through, and not once was I taped to the bed or held by another nurse while one searched for the BMB fluid. It was over almost before I knew it was happening, and although I was a bit drugged I was comfortable and ready to get out of the hospital. I had to sit with the nurse for 15 minutes until they checked for bleeding, then I had to drink something and I was set free, with a few hugs from people and well wishes, again it was an amazing experience.
I will not go into great detail about Pittsburgh, because that is in the past, but when we did get to the hospital for the first time, no one welcomed us, and the desk we ask directions at was hosted by a person who said she had no idea where the office was and went back to reading her book. We floundered around for a bit, found the office and then when we went in I went up to sign in and the woman said to sit down she would be with me shortly. There were no smiles, no kind faces, and no support even after that first visit. I will note the one nurse, her name is Lisa was excellent and if I ever had a kind soul or go to person to contact there, it was she. I hear she has since moved on from my former doctor also, I hope she continues to find success in her career. Over the next several months I dealt with missing test results, incorrect relaying of important information like accurate PCR results, and according to Cleveland a misdiagnosis of the stage of my CML, which Trey, Scuba, and Phil just to name a few, were positive of last fall.
I have heard from Cleveland, I have no hard copies yet, just a phone call, so no actual numbers. I have continued maintain PCRU at Cleveland, International Scale, the BMB showed 'clear' (those were the doctor's words),and although the chromosome testing is not back yet, the doctor is thinking I need to only see her once or twice a year and follow up with the local oncologist. The other thing Cleveland noted was after a review of the original slides from the first BMB done in October last year in Pittsburgh, the team of CML doctors consulted and can find no reason I was diagnosed in the accelerated phase, they believe it was/is the chronic phase of CML. Trey, Scuba, & Phil and many others, you knew that several months ago.
I know others have posted stories about doctors, treatment, and how they felt they were not receiving what they should, but changing doctors is difficult, and changing the labs for the PCR testing is also a huge change for some. I wanted to share this story, because it took me almost 9 months to make a change, to take that jump to go to a different doctor, even as I was making the arrangements as much as I did not like what was happening, I was afraid to change. Now I am continually glad I made that jump, and I cannot state strongly enough if anyone is unhappy where they are, please look for a different option. You do not have to be uncomfortable, feel like you are not important, or that you are not receiving the care and attention you should be, there are professionals out there that will do all these things, and they will help you with your journey. That first step is the hardest, I will be forever grateful to several members of this group, some mentioned changing, others often reminding me it was the best step I could take, stating I would be more secure and happy if I had a hospital and doctor I trusted instead of second guessing every step.
In no particular order, thank you Judy, Billie, Susan, Marnie, Janni, Traci, Scuba, Trey, Phil, and a boat load of others here for the support the last nine months. Everyone was right about the care, the treatment, and even the results. I realize this is not going to happen every time, but perhaps this will help other members sitting on the fence wondering if they should change doctors, or stay where they are.
Have a great day everyone, and thank you for being here for me.