More Post-Surgery Update

Hi Friends!

I’m sorry I haven’t written in a while, I’ve been resting since my surgery two weeks ago.

I have been home since 8.24.19. In our house, my bedroom is typically upstairs but since I cannot go upstairs, I have been staying in our bedroom on the first floor to make everything easier. We have had lots of visitors stop by in the past two weeks and flowers delivered. Thank you to everyone who has contributed to helping with our transition back home. We can’t express enough how grateful we are for such a wonderful support system.

For me, the main thing I do is rest. I have been scared of going up and downstairs for a while so I’ve been sticking to flat surfaces as much as possible. However, I just conquered that fear a few days ago by going up and down 2 steps in our garage. Still quite scary but I did it and was very proud of myself. We had an oncologist check up on 8.29.19 to see how I am doing, feeling, and to just ask any questions that I may have. Bloodwork shows I am doing well. We found out that I did not qualify for the clinical trial. I did not have enough viable tumor in order to qualify. This can be a positive thing because we found out that the first tumor that was closer to my knee wasn’t actually a tumor, it was scar tissue (this can light up on a PET scan). The second tumor further down closer to my leftover fibula was mainly dead, however only had a 4mm diameter of live cancer cells still present. They did biopsy the entire leg to make sure no cancer had spread to any other parts but everything was clean.

I’ve had a lot of people ask me if I regret doing an amputation because they found so little cancer still alive and my answer is no. I know that it was the right thing to do in order to make sure we got all of cancer out of my body. I also know this will give me a better quality of life in the long run with limb function once I learn how to use a prosthesis, which will be further down the road in a few months. I’ve also had a lot of people ask me if this means I’m ‘cancer-free’ and first off, I am not comfortable using that term and I don’t think I ever will be. Second off, it is because I don’t believe anyone can just be ‘cancer-free’ once they’re done with treatment. I will never be offended if someone uses the term towards me at all because it is a fair thing to say but it’s hard to have cancer, believe you’re okay, then it suddenly comes back. So to me, being cancer-free is not a real thing. I like to say no evidence of disease (NED) which is a term used lots in the cancer society. However, even then I cannot tell you that just because we amputated and my scans didn’t detect cancer elsewhere that I am NED, that is something we would have to ask the doctors about and we haven’t.

School is currently back on hold. I withdrew for the second time and placed my scholarship back on hold with the hopes of returning in the spring, but I will never know that answer until January draws near.

Right now our focus is rest and healing. We have upcoming appointments with both the surgeon and oncologist on Monday 9.9.19. Both are checkups. I could possibly get the staples out of my leg but we aren’t sure yet. We will not know when we start chemo until the surgeon gives the oncologist the go-ahead. That could be next week or the following but that will be another blog explaining the chemo – this one is long enough as it is.

Prayers:

• Phantom pain in my leg to go away – they cause sharp shooting pains in the leg that is not there anymore
• Healing continues to go well and smoothly
• I gain strength in my stump-leg
• We continue to adjust well to this new life