- May 5, 2017 at 11:57 am
My trip to Queens medical center in Honolulu got off to a bumpy start . I flew in Wednesday night , got a hotel room , and tried to settle down before my 7:30 am PET /CT. At 6 am I got a call from the scanning department that the infusion machine was not working , and that they had to cancel until it could be fixed. Part's would need to be ordered from the mainland . Part 1 of my meltdown was under way. I decided to head over to the cancer center at the hospital anyway since I was scheduled to see my oncologist at 2:30 pm to review the scan . They were just opening the door at 7 am when I arrived . I told them Pet/CT was offline . They said sit tight until they knew what to do with me. At 8:30 they told me to fly back home since there would be nothing to review . Part 2 of my meltdown kicked in.
They didn't know it, but besides reviewing my scan, I wanted to push my oncologist to get on board with me getting to UCSF . I asked if I could still see him? At 9 am they said yes. Part 3 of my meltdown was wandering aimlessly throughout the large grounds of the medical complex trying to convince myself to not give up on the entire process . I was angry . So angry . Not at anyone , or any one thing. Just so pissed. For the next 6 hour's I wandered.
At 3:00 pm I saw my oncologist . I pleaded my case bringing him up to speed on my most current developments ,and my commitment to working with melanoma specialists at UCSF . He was extremely attentive , supportive , and willing to jump on board . For the next 45 minutes we hammered out a team work approach how to proceed . I showed him several of my new lesions which he looked at very closely . He said "They look totally benign . " I said yeah,they all have. Then, I swear I saw the light click on. He wondered a loud " I wonder if you are truly metastasized to the epidermis " He got it. And at the same time, I got it. I have been so frustrated that no dermatologist was catching my melanomas over the year's , and I kept shopping new ones thinking incompetence , rather than just a unique version of the beast. But only after developing a keen eye on my lesions have I been so successful at catching them. They truly don't look that bad to anyone but me….I get it. I've been floating the possibility of epidermatropic metastatic melanoma for some time now. I feel confident my team is nearly fully assembled. I'm not so pissed as earlier in the day…rather happy actually .
I want to thank MRF for making this forum possible , and each and every one of you who share your stories here. The good , the bad,the ugly ,the triumphs . ….and the sad. It all blends together for the benefit of all . I appreciate the advocacy of everyone here. Every story is important , and helps in so many ways .
- May 5, 2017 at 12:29 pm
Good and bad – but getting another advocate far outweighs the scan issue (I hope). Thinking about you, Bob, and hoping this comes together soon so you can get a real plan in place!
- May 5, 2017 at 12:53 pm
Hey Janner . ..you're never to far from my thoughts . You have helped me more than I can ever say over the year's . I actually didn't think it would be this hard . I've learned so much from you and others here. I'm wired from my trip , and most likely heading back over there for scans as soon as possible . But I do feel it's coming together . ..finally . Sheesh! I'm sure there's another meltdown for me somewhere . ..haha . But things are moving .
You're an absolute gem.
To be continued . ..
- May 7, 2017 at 3:35 pm
Bob, I'm so sorry to hear about your frustrating day. One thing going wrong ( like a potentially wasted trip, broken equipment, etc) is bad enough and can cause frustration.When two or more things go wrong and it is clear that is going be one of THOSE days almost anyone would have at least a small meltdown. I'm pretty sure that we have ALL had them and will undoubtedly have more, but at least you had a good outcome that made the trip worthwhile. You have the support of your oncologist now and the basis of a great team! Well done! You are ALWAYS going to be your own best advocate. You know what is normal vs abnormal for you better than anyone else ever will. Congratulations on doing such a good job of caring for yourself and being vigilant. Keep it up!
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