Friday we went to see Dr. Chen since she offered to remove infamous drain!! YEA!!! I also to meet her nurse, Shelby for the first time since all of this started.
But first, I had labs scheduled and while waiting for the lab tech I met one of the other Oncology nurses. She asked why I had my leg in the brace and I explained about the sarcoma tumor…turns out she had the exact same type of surgery a few years back! It was so nice to connect with her and see how well she has recovered…after all she is a nurse so on her feet all day long! She told me she has even played golf and has gone roller blading!! There are days when I shuffle along in that walker that I wonder if regular walking will even be in my future and then I meet someone like this that is so positive and encouraging. She did tell me to keep up with PT…because your bones are a little week and she broke her ankle a year after the surgery and really felt not sticking with the PT was a big factor for that break!
The appointment was at 2:30, but Chen did come in about 3:30 which we were aware of her running behind…as always…LOL. Shelby told us that Chen said she wanted to see me last so she could have as much time as she needed with me and not feel rushed. She did remove the drain, which took a little work getting the stitches out, but it finally came out without an issue. We do have to keep an eye on it just to make sure it stays looking like it is healing. There is another spot to watch on the knee where the drain tube kind of indented into the skin and caused a sore…we should probably have been told to move the tube every once in awhile. But that looks to be healing good also.
Next Steps
We did get a biopsy on the schedule for 1/31, but right now Chen is not sure which node to biopsy. The one in the pelvic area looks like it may be too close to a blood vessel at this point. So next step is to have another CT scan to try to assess the nodes. Once the scan is done, Chen will meet with the biopsy team to get their thoughts. If the pelvic one is still the best, but the blood vessel is too close, then we will do a “watchful wait” and scan again in a few months to see what has changed. There is still a chance that they nodes are reacting to the tumor, the radiation and the surgery and they will calm down on their own. At least we have a start and a plan, which is what I really wanted so I knew we were addressing these little buggers. Supposedly there are 3 that are enlarged, so it would be nice to have the scan show that they may be getting smaller and they were just lighting up to protect the rest of the body. I think of those nodes as the big brothers, or sisters, standing up to defend that tumor invasion.
Also discussed the pain I am experiencing with the leg. It is hard to explain, but it is almost like a sun burn kind of pain, where your clothes are rubbing on that area. Just a burning type of sensation. Chen, along with being a oncologist, is also a hematologist and it is her thought that the pain is the sensation of the nerves healing. So she ordered a prescription for a pain medication that would address more of this type of pain. That should be at the pharmacy today, so I am excited to see how that works. The oxy can dull it….so can the CBD…but if there is something that exactly addresses the nerve pain, I am really hoping that helps! I am also trying to get up and around in the walker more, even just to walk around the living room.
As Chen was removing the drain, we talked a lot about my month or so long experience with Mayo. Chen said that she felt they were moving way too slow and would get the update from Shelby that I would leave her, but still felt things should move faster. She said she was relieved to finally hear that the surgery was done and the tumor was out.
I did also ask her why she takes Monday and Tuesdays off…Jason said she is probably preparing for retirement!! NO!!! Well, she has been doing that for 7 years and does it so she can fly home to her parents in California and help them out. They still live at home, but need guidance sometimes. She flies home, and her sister flies home other days and their brother fills in in between.
We finally got done with the appointment about 5:30…and none of the volunteers were there any longer to push me out in my wheel chair, so Dr. Chen did it herself along with Shelby while David got the car. There was just something so enduring that a doctor of her level would wheel me out and wait for David and the car and then they all helped me get in the car!! She is one special doctor!! I told Shelby…wow, the doctor is wheeling me out…seems out of her job responsibilities…and Shelby said, yes she does this every once in a while. Top Doc for sure!!
Another gray Minnesota Monday with small snowflakes falling. But things are looking on the right path….we have a good plan and path forward. Not sure Florida will be in our Spring plans, but one day at a time!
Smile today and make someone else smile!
Dandy Ventures 