I'm finally accepting my life in it's current state, and with that, finally, has come the understanding and acceptance that my body is reliant on medications to function.
I'd always hoped I would be able to lose each pill. I thought, maybe, one at a time they'd fall away until I took nothing but a couple supplements to improve my well being
That is not the case.
Since my allogenic transplant, it seems like the amount of drug regimens, not singular medications, that keep getting added to my body are increasing exponentially, adding more chemical components and financial strain with each pill.
After transplantation, I was placed on a series of "prophylactic" medications to prevent infections. These included Bactrim, to ward off PCP pneumonia a common type in the community acquired among the immunocompromised.
Then there was the acyclovir three times daily to prevent viral infections.
Folic Acid at 1mg was added to improve my red blood cell health by aiding my body in the creation of erythropioetin. This keeps me feeling healthy and vibrant, without the supplement my oxygen carrying capacity is diminished and there goes my joi de vivre.
I've taken my lexapro (an anti-depressant) religiously since I became aware that my disease would likely continue to return.
I didn't realize I would be taken these years later to maintain my health.
I certainly didn't predict that MORE would be added to counteract the side effects of graft vs. host disease and all my other treatment acquired illnesses.
Just like you never really know what you have until it's gone, you never really know what you're getting until you have it or know where you are going until you are there.
I have finally accepted that I need pain control to survive with any quality of life
Narcotic pain management was something I resisted like the plague during my first transplant not wanting to be both an invalid and a drug addict.
My outlook was also different back then. My goal was to go back to work, get my master's degree, and live a long healthy successful life with my family.
After recognizing the reality of the situation, that my cancer will likely return and in the interim I must actively control my graft vs. host disease, specifically the bronchiolitis obliterans, my mindset has changed.
I also have palliative care to thank for this.
Society puts a huge stigma on those who rely on pain control to function as contributing members.
I've finally accepted that if I want to be happy at all and enjoy the life I have, and to make any positive impact on those around me, I need to be comfortable.
Pain has been a huge issue through out my treatment. It impedes the healing process by placing stress on the body during a period when the body needs no further insult.
It took a whole team of providers asking me, "Really, Hillary, do you want to cut down on your pain control? You have a lot coming up. You have BO. You're having trouble breathing." to get me to realize narcotics were part of my long term life management plan.
Thank goodness for them. I no longer feel guilty that my body requires these medications to live. I can now take my pain pills daily without guilt, like I should be hiding in a corner with the criminals.
Palliative care has also empowered me to view my disease process from a different angle.
The vast message I receive is to fight this disease to the end, do or die, it or me.
That tactic is painful, exhausted, and has yeilded awful results for the last four years.
I'm fighting, but I'm not being consumed by the fight. It's sidelined.
Cancer has finally become an after thought to what I'd like to do right now, today, with my time. As my practitioner told me, it's my time, my energy to do what I feel is necessary.
She told my a great story about my Pepere who died over ten years ago from lung cancer.
During his treatment, he decided to go ride his bull dozer for four hours.
He loved his bulldozer. It was his life and livlihood. He built an entire excavating business, funded and raised a family using the skill and love he had for that machine.
He loved it so much that the family said nothing even when he was diagnosed with narcolepsy and would fall asleep at the wheel.
More than once I caught him teetering off the edge of a mountain, asleep in the cab of the bulldozer as it threatened to plummet dangerously down the side of the mountain.
HE was fine with going down in a blaze of glory with his trusty dozer, and we had to be okay with it too.
It was his life. He would die how he wanted to.
But my memere wasn't so pleased that four days later Pepere was still exhausted from his big four hour dozer jaunt.
She called up palliative care asking them to talk some sense into my stubborn grandfathher.
When the practitioner picked up the phone with Pepere she asked, "Well, Was it worth it?"
"Every single second." he said.
"Then go back to bed and rest." she replied.
I'm sure he felt then the relief I do when I'm given permission to feel exhausted, over extended, and told it's okay to be sick. It's okay to accept your disease. It's something so few of us hear, and it lends to fear.
I don't want fear running my life anymore than I want my medications running them.
But while I'm surviving, my medications do.
The list continues. I no longer have one system that works without intervention.
My bowels are controlled through a laxative taken twice weekly, marked on a calender so I don't forget when I movement. The same with my vaginal walls which atrophied due to a combination of menopause and chemotherapy.
Apparently it was true when my husband told me if I "didn't use it I'd lose it."
I just thought he was trying to get some play.
I now take an estrogen cream bi-weekly so the nerves do not come to the surface causing severe pain with movement.
My eyes are kept dry and relieved from constant burning through the use of hot compresses twice daily and artificial tears 6 times daily.
For my graft vs. host disease I am now on prednisone, which condensed 20 drugs used to treat each part of my body symptomatically into one.
At night, I take another antibiotic, zithromax, to protect my lungs from the BO.
Without the prednisone, my BO requires a series of medications and inhalers totaling 6 without which I would die.
Hearing myself just type about my medications, I wonder how I have time to manage anything else.
My health is a full time job.
Last night, I was thinking how scary it would have been had I never been exposed to these twenty drug regimens before becoming ill. I was lucky to have had some experience in renal transplant at montefiore medical.
Not only would I have been sick and depressed, thereby function at my least effficient capacity, but I would have been given a whole new way of living to learn.
Coping with the disease is hard enough. Learning how to protect yourself is vital. It would be great if patients just had to deal with what is happening with their health, but then there is a whole system to navigate.
At your worst you are thrust into a whole new culture.
I've been thanking someone at DHMC Norris Cotton all week in my head for pre-authorizing eight of my medications through the insurance company.
I can only imagine the work she had to do to get them covered for my co-payment.
She's clearly a miracle worker.
Thank goodness for all my medications and people like this so I can live my happily ever after.