My first overnights at a hospital!*
*Since I was born - I spent four nights there with my mom through New Year's :-)
This past week has been exciting, but not in a way one wants excitement.
A little history: About a month and a half ago I had some hip pain, but nothing showed up on the CT and with more activity the pain receded. However, that came back last week and was starting to worsen. We did an MRI of the hip and spine on Thursday, which showed a mass in one of my right leg muscles (the vastus lateralis for you anatomy people). It wasn't small, and there was concern so my oncologist referred me to an orthopedic oncologist.
However my pain got worse Friday then Saturday, and by Sunday I could barely get to the bathroom (walking and standing was very painful) and my foot was going numb. Monday morning I was worried this pain level would be the new normal and my toes wouldn't move right. That was a low point. Luckily my nurse navigator and oncologist were like "go to the ED now". So Shell picked me up, and we spent the day navigating that down at Christ, Mt. Auburn. I was admitted as they thought the pain and numbness might be from a herniated disc putting pressure on the nerve at L5, plus this mass was still there. Nerve pain man...nothing really helps pain med wise. On the plus side I could chat with the lead resident at 3am about what might be going on and what I wanted.
This leads to a shout out to all the docs, nurses, PCAs, transporters, chefs, food delivery, house cleaning, and others I know I am forgetting who were amazing. Two of my favorite parts were (1) all the women who were on my healthcare team at some point and the diversity of those women and (2) the medical team doing rounds on my first morning. This was a diverse group of almost all women ranging in education from 3rd year medical students to residents of various levels to a couple "full" MDs including the attending. The house was packed. The 3am resident gave the run down, but the attending came to me, sat down at eye level and chatted. She also found and palpated the mass in my leg (one thing to hear about on MRI other to feel it yeek). She listened and we worked a plan as much as possible. She modeled what a good doctor does for this big group, and I was happy to be a small part of an education experience for these bright eyed new docs.
Back to me, ha! The first step was to try to get the nerve pain under control, so I was worked in for an epidural steroid injection to hopefully reduce the inflammation and pressure on the nerve descending out of L5. I got a nice education on where that nerve goes....both in theory and in practice (ouch). Great doc and team and back upstairs in an hour. It takes time to kick in, but as of now (Thursday afternoon) I have clear improvement on pain and mobility. So, there's hope!! There should continue to be improvement for a few days to a week and how long it lasts is guess work. But for now, I'm so grateful.
Oh hey, did I mention my mom was there most of Tuesday too? So lucky to have her, even when I'm a bit cranky trying to do for myself. Her knowledge of healthcare is amazing, and she is a great nurse (even if retired) and mom (not retired from that!).
So then I sleep and get a call from the orthopedic oncologist. He called me directly to tell me there was an opening the next morning to biopsy and possibly remove the mass. After getting the plan straight, i.e. if benign we will do x, if metastatic we will do y, and if high grade sarcoma, we will do z, I was in. And appreciative that things were moving quickly. He also used the term "pop it out". Ha.
I feel like surgeons are their own breed of doc, but this one is a keeper. He came in early, found the mass (pointing out that we could see it...uhmn yeah yikes) and marked me. An hour and a half later I'm coming out of anesthesia with minimal pain and BENIGN! My favorite word, right up there with unremarkable. Final pathology won't be back for a couple weeks, but initial take looks good. Did not expect that. Very happy. 5 stars. Mom and Shell had been there the whole time and I think I gave them the news lol The surgeon had already called Will :-)
And then they ejected me from the hospital! And I got to come home. This morning (Thursday) I was definitely getting around better. I don't have better toe movement and am still missing feeling in foot but I can walk further with far less pain (I don't want to cry when I walk). Hoping to sleep in a bed tonight! Thanks to Shell for providing the recliner. And driving me home, settling me in and keeping Hermes from taking me out in his excitement.
So where are we? What caused this? The former is easier. I'm healing up from the surgery as the mass was removed in its entirety (or at least mostly) as well as seeing improvement on the nerve side. I will see my oncologist tomorrow for our normal monthly meet and likely treatment, though I refuse to have a long needle near the pain in my right hip. I have follow ups next week and am resting for today. As for what caused this...we don't know. I did have metastases in L4, but they are healed up according to recent MRI. More info on the thigh mass might be helpful, and the surgeon said removing it couldn't hurt with the pain issue, and might help.
Shout out to friends and family for thoughts, vibes and prayers as well as feeding me good food (Joe, Bec, Dad, and Will). I'm in a much better head space than Monday morning and feel like a new normal will include mobility. I had great conversations with the palliative care team about goals, which may not come into play again for awhile, but they are recorded. Yay palliative care!
Other random, and way more awesome things:
The garden is producing like crazy, and Will & Shell harvested this week.
Garden on June 22. Getting more jungly now! |
I had a wonderful time with the parents, Shell and Jilly in Myrtle Beach! I'm so grateful this stuff held off until after that. We had wonderful weather, including the gray and drizzly days, with water that was warm and perfect to lounge, throw football, and ride waves (depending on the day). We soaked up sun and were able to hear and see the waves from our porch, and we even scored a glorious sunrise on the last full day.
Selfie at the beach! |
Storm rolling in over the water...credit to Jillian M. |
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