Heather’s 30th birthday came, went and I was not sure how I felt about that. Then, 15 days later we had a very different sort of Christmas with more family missing. Just as I think I am doing okay the New Year hits. For many people it is just a New Year to try to do better than they did the year before. To some it is a milestone year such as a wedding, new baby or graduation. The New Year of 2018 means here I am starring down the 10th anniversary of Heather’s cancer diagnosis. I really don’t know how or what to think.
I decided to train and run a half marathon at Walt Disney World in February to mark the 10th Anniversary. I set out to fund raise for Children’s Miracle Network for $1200 and managed to raise $4500. I am very proud of my accomplishment for CMN.
During my training I was running 7-8 miles on my long run pretty consistently when I developed right hip pain. I tried to rest and stretch and then I ran the Tinkerbell 10K in May with little problems but overdid it walking after the race. I have spent the last 8 months going to the chiropractor, getting massages, stretching, foam rolling, heat and many other different things at home. The pain was getting worse and currently I walk with a limp and many days I can barely walk.
So enter the orthopedic doctor to help me figure out what is wrong. Going into that appointment I figured he would tell me to stretch, do physical therapy and get an injection to reduce inflammation. Well some of that happened but I was completely knocked off my feet with what he found. I was given the life altering diagnosis; that more than likely, psoriatic arthritis has damaged my right hip joint to the point I will require a hip replacement. I would be scheduled with physical therapy to strengthen the muscle around the hip to support it more, a order for a fluoroscope hip joint injection and I needed to find a rheumatologist. My career of running is over, period and I need to find low hip impact exercise to do such as biking, elliptical or swimming.
I left the office in shock and disbelief. When I got into my truck I began to cry. I never dreamed I would have one autoimmune disorder let alone two plus need hip replacement surgery sooner rather than later. I began to feel some of what Heather felt when she got her cancer diagnosis of “this is so unfair.” I have tried to do everything right, I am at a good weight, I exercise, don’t smoke or drink so how can I have these life altering things going on.
The weekend was filled with research, as I do not go into anything uninformed. I want to know about medications to treat PsA (psoriatic arthritis) and the possible side effects. The leading beginning drug of choice is Methotrexate (MTX)!! The drug that saved Heather’s life but also damaged her lungs beyond repair and ended in her death. So, do I take this drug and chance it? Would it affect me the same way? How would I feel to have a bottle of MTX on my counter? Most all the biologic drugs can cause lymphoma, so do I risk that with my family history? There are two I have found that do not have hideous side effects but I am not sure how the rheumatologist will feel about my research. I do want to do something to slow down the progression of the hip damage to put off hip surgery as long as possible.
Fibro and PsA have many of the same symptoms so do I have both or did I only have psoriatic arthritis and that has been let go for years now. I have no idea and I am not dealing very well with the idea I am physically not able to do the thing that I want to right now without severe pain. I want the pain to go away and be able to at least walk.
My intra-articular injection is set for Thursday, Jan 11. This may sound simple to most, but to me I am sent back to thinking about Heather’s bone marrow biopsy. She was on her side, numbed up and then the procedure was done. (Leave it right there and not describe the rest of the horror with the procedure) I will be on my side, numbed up and then the needle will be placed, a dye will be injected to make sure they are in the right spot before placing the actual drugs. This is being done in radiology just like Heather had spinal chemo done in radiology. I am nervous about this already without adding the PTSD that goes along with it. This is not an easy simple thing to do for me.
As for my Princess Half Marathon coming February 25th. The ortho doctor gave me permission to run the race but preferred I walk it. He understood this was something I really had to do. I am hoping the injection allows me to do some walk training. My dear, good, bestest friends Scott and Shannon have told me they will walk with me and not leave me. We have a new plan to the race now as runDisney celebrates the last runner to cross the line we have decided we will try to make the spot no one wants in last place. For me all I want to do is cross the finish line. It is so very important to me to do this.
So far the 10th anniversary year of Heather’s cancer has gotten off to a rocky start. My only hope is that it gets better soon.
Aftershocks or “grief bursts” happen when some of the “down” feelings you have already experienced in grief come at you again several months, or years later. Sometimes something acts as a trigger and catches you by surprise; a song, a place, a movie, a season or event, painful emotions crash in on you, and it feels as if you have started the grieving process again.
IMAGE: Heather getting ready for her spinal chemo in radiology. I would stand behind the lead wall in the same room. Yes I was that mother. I won’t be on a gurney but this will be my view for the injection…