It’s 2020 and I’m still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I’ve been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently and urgently. While I am grateful to the doctors on my team who listened and responded, I’m extremely disappointed that my experience with a new doctor who was supposed to offer options had to result in me filing a formal complaint against her and her physician assistant who dismissed my pain and acted as if I was making it up.
I do have certain expectations of the people who are paid to assist me with my medical treatment. My visits with these people are not voluntary, I have to go. Their job is clear … to treat my cancer, the symptoms of that cancer along with the symptoms of the medication the doctors prescribe for me, and to look at me as a human being while performing task one and two. To me, the third part becomes extremely important when pain is involved and when any part of this three legged stool is compromised, the entire thing collapses.
So, here’s the chronology and the remaining tasks …
I’ve seen my physical medicine doctor, who was a bit stymied by my symptoms. He attributed the pain to the Mets in my right leg/hip. Some of you may remember that I had a 5 cm tumor in the middle of my right femur when I was diagnosed back in 2017. That femur was about to shatter when an orthopedist inserted a titanium rod inside that femur (along with the one on my left side). My right leg has had a lot of trauma, but this was a new pain and it has increased over the last few months.
After the physical exam, my physical medicine doctor sent me for xrays and an MRI. The X-rays showed that the hardware (one rod and 4 screws in each femur) are still properly placed. Some of you may remember that I developed heterotrophic ossification (HO) in early 2018, which is when microscopic shards of bone are left in the muscles and then it starts to grow. Super painful! The really bad thing is that the protocol is simply to increase muscle mass to deal with it, while dealing with and/or medicating the symptoms. The HO is mostly absorbed on the left side but there’s some still showing up on the right side, which could be part of the reason I’m in so much pain.
I had the MRI on Christmas Eve and had to repeatedly call and follow up to get the results from the orthopedic oncologist who was so terrible. When she finally got on the phone with me (after I told her supervisor I wouldn’t get off the phone unless she told me), she told me that I likely have progression and I should talk to my medical oncologist. Her dismissive and snippy attitude set me off and I had a rather loud conversation with her about how she should talk to patients. Pretty proud of myself that I managed not to curse her out but hopefully made the point that you don’t say stuff like that which raises anxiety exponentially, don’t offer any solutions, and then just get off the phone. I’m also still pretty incensed that she made no effort to talk to the rest of my medical team and basically just wrote me off.
So I met with my medical oncologist, who is amazing and never makes me go for longer than a day without knowing what’s going on, and we discussed the results of the MRI. There is a met in the head of my right femur that is pretty big. I’m not in danger of my bone shattering any longer because of the hardware, but I still have cancer there. Between the two MRIs in May of 2018 and December of 2019, the met grew from 5 cm to 8 cm. However, I’ve had 5 PET scans in that interval as well and the measurement that indicates activity (aka likely growth) has gone down, especially since I’ve started my current treatment. My last PET was in November of 2019, which was after the pain started.
If your head is spinning, just think how I felt!?
Realistically, I could be in the midst of a progression, which means my second line of treatment may have failed me after 6 months or maybe not. That kind of uncertainty is infuriating. Absolutely infuriating. Almost as infuriating as the pain that gets so bad I’ve had to resort to taking the oxycodone that my pain management doctor insists on prescribing to me even though I resist taking it. I hate how narcotics make me feel but just the fact that I’m taking it nearly every day should give some insight into how bad it is.
The plan, for now, is to stay on my current treatment, get a physical therapy consult to see if further exercises would be helpful, and then a PET in February, which would be the usual three month schedule. I’ve not had to change my routine much because I’m literally the most stubborn person about cancer not taking things away. I don’t enjoy being in pain or the side effucks of the medication I have to take to function, but I’m functioning.
Actually, I’m more than functioning …
My kids have had an amazing Christmas break, the connections I’ve made during 2019 means that I’m stepping into 2020 with options and ideas and really cool opportunities, my husband and my boys are healthy, I love connecting people with lawyers to do pro bono work, I love writing this blog and for ABC, which is a division of HealthUnion, a company full of amazing people, I love serving on the PTA Board at my kiddo’s school and volunteering in the library and I cherish the friendships I’ve made over the past two years, inside and outside of the Mets community.
Sometimes all you need to focus on the silver linings is to write them down.
So that’s my update … I’m starting off 2020 with pain but with a full heart and so much gratitude that I’m still here, still functioning, still parenting, still contributing and that’s the way it will be until it changes. I’m looking forward to seeing how my word of 2020, SACRED, is weaved into the fabric of the year and our experiences as a family.