Finished all the 1 year appointments yesterday at Mayo. And some good news to share…I do not have to go back to see the surgeon for a year. He will do an MRI at that time and then meet to see what our next steps are!!! YEA!!
Dr. Houdek was quite talkative yesterday, which was nice. He did say that the chance that this tumor would come back is only 3%. The tumor I had is very rare so they have limited data but he is confident in what he has seen in that data. We did talk also about…did I have “sarcoma” or was it something else. This came up because before Houdek came in another doctor came in for the “pre-exam” discussion. Usually his NP talks to us first but she was out of the office. This doctor was not sure I really had sarcoma. I am sure that was told to me in initial appointments…so Dr. Houdek explained it more.
When they did the needle biopsies on the tumor they could not get a clear answer if is was sarcoma (malignant) or pre-sarcoma (benign). It wasn’t until they removed the full tumor that they could get the clear answer in that it was benign and considered “pre-sarcoma”. Houdek said that had it not been removed, or he had not clearly gotten all of it, it would eventually become malignant, thus the importance of getting it out and getting all of it out!! So it was a tumor (so Ted the Tumor was appropriate) but really only pre-sarcoma. Thinking again how blessed I was that Chen decided to do an MRI when I hurt myself playing bocce ball. Otherwise who knows where I would be at. Now Houdek did say that I should have been able to feel the tumor and I wish I would have known that so I could have felt what it was like. But he said in the time that I do not have appointments with him, it makes sense to be aware of any lump type things in that area. In a year I will have another MRI and meet with him so he can be assured that all looks good. Chen will send him the PET results when she gets those so he can also assess using those scans.
Yesterday we went to see Sarah who is the NP for Dr. Welliver that is radiology. She is really great to visit with. Although the wait was close to an hour getting in to the room. We were quite surprised to get there and see that waiting room was almost full. Honestly in all of the appointments I have had at Mayo I have not experienced a wait time like that at all. Maybe 10-15 minutes was the most. When we finally got in to see Sarah she apologized and did not understand why they were so backed up like they were. Even trying to find a room to put a patient in was a challenge.
Sarah thought everything was going well also and when she saw the 1 year next appointment she talked to Welliver and Welliver was ok with that too. Although when I started this journey, I was part of a study. The usual path for this type of treatment is 5 weeks, 5 days a week of radiation. But they study is hoping to support 3 weeks rather than the 5. Some other hospitals on the East coast are already using this process but Mayo needed to have a study to prove it was appropriate for them also. With being part of the study, I should really come back in 6 months for an MRI and appointment. Sarah said she would check with the study coordinator. I told Sarah I am more than fine in coming back in 6 months…I would really not want my data points to impact the study at all. Sarah messaged me a little while ago and she said that yes I do need to come back in 6 months…which I am more than happy to do. Frankly I really like having my appointment with Sarah rather than Dr. Welliver. LOL Welliver is nice, but really Sarah is the one that answers all our questions and gives us great advice for moving forward.
I have been away from PT for a month of so, but have made appointments to go back going forward. Dr. Houdek did say I could wear the brace again to help protect my knee if I feel it is going to go out on me, but I really told him I would feel like I am going backwards….and I know getting back into PT will help build up that quad. I just need to follow through with the exercises.
It was nice to be back home. I sat at the keyboard for a couple of hours which is always a nice relief and way to relax. I had ordered a paint by number kit, which came from Amazon, but the canvas is wrinkled (which I have read happens with less reputable PBN vendors) so now I have to get those wrinkles out before I start. I Googled how to get them out….what in the world did we do before Google!!! Sometimes my hands shake somewhat so I wanted to try one kit to see if I could even paint those little spaces. It is a Santa Claus picture so will go great with my Santa collection if it works out.
Now it’s time to start planning and thinking about our Florida trip. I want to stay in a couple of quirky AirBNBs (tree house, OMGs, tiny houses etc.) so will plan the trip accordingly. 🙂
We did go to Ruth Chris Steakhouse on Monday night…some celebration for the good Mayo news and also our 51st anniversary is this weekend so we thought we would splurge. And yes, it is expensive so you need to be prepared for that!! We asked for the waiter we had back in July and he made the experience even more fantastic! Certainly not something we would do on a regular basis but great for that very special occasion.
Well, take care…think sunny thoughts because certainly the weather is not thinking of any! Guess we need the rain? I would think we are past that need by now!! LOL
Dandy Ventures 