I recently had a major surgery to remove an oral cancer. This diary is to thank people who sent positive thoughts for my recovery, including a beautiful quilt with messages of love and support (they worked!) and also help for me and my sister to make sure our bills were met, as well. You took a lot of worries off of us as I went into a very scary situation with no sure outcome. Thank you from the bottom of my heart! Also, I want to let everyone know what happened. So without further ado…
The problem started with a sore under my tongue, on the floor of my mouth. I suffer from a severe form of an autoimmune condition called erosive lichen planus. I was diagnosed with it in 2014 and have been under surveillance since because there is a small risk that cancer can result from all the repeated wounding and healing that goes on with this disease. As such, oral lichen planus is considered to be a pre malignant condition. Since I have a severe form of the disease, over the past few years I have tried to get my lichen planus under control with immunosuppressant drugs (highly unpleasant and exhausting) with no joy. Topical steroids weren’t helping enough, either. I hadn’t had a biopsy since my diagnosis and the Oral Pathologist at the OHSU Dental School thought I was past due because, as he put it, lichen planus can be “naughty”. I am so glad I listened to him. I asked for and was granted oral biopsies. They were done in early March and on March 8, I learned that the persistent sore under my tongue had become a cancer.
Later that week, I had an appointment with my surgeon. A CT scan was ordered, and based on that, I learned later that I would be having a marginal mandibulectomy (removing a layer of jawbone under the tumor) with a left neck dissection (to remove the lymph nodes), and a free flap graft over the wound in my mouth. The graft would come from my arm. I was told it was likely I would wake up with a Tracheostomy because the swelling in my mouth would interfere with breathing.
On April 19, it all happened. I reported to to hospital at 5:30 am and put myself in the hands of my surgeons. There were two of them; one to do the marginal mandibulectomy and neck dissection, the other to do the graft — which required some fancy and delicate rewiring of blood vessels so that the flap would be happy in its new home. I am told it took a ninety minutes to hook me up to all the needed lines and nine long hours for the surgery itself.
I woke up in the ICU in a web of tubes. In my right arm, there were two IVs — three if you count the doohickey in my radial artery that was monitoring blood pressure, etc. There was a catheter between my legs and a gastric feeding tube up my nose. There were three wound drains over on the left side, two with bulbs at the end, one with a little box. My upper left arm was securely bandaged. Yes, there was a tracheostomy in my neck — which is really a tube within a tube. And overlaying the trach was a big, fat, blue tube that hissed — it provided moisture and oxygen to the trach. My head was slightly turned to the right so I couldn’t see much of what was going on around me. My glasses were still packed with my clothes so what I could see wasn’t well focused. I was mostly aware of all the tubes. And I couldn’t speak because of the trach. I felt very much pinned to that bed, very helpless.
Every few hours, the nurses would stick a wand in my mouth to listen to the blood flow in the flap (whoosh, whoosh, whoosh). This was critical because if the flap should happen to fail, I would be rushed back to the operating room. My flap remained happy, thank heaven. It was nice to have the reassurance that it was okay.
So there I was, stuck amongst the tubes. In my drug fevered imagination, I wondered if I could fly my bed out into space, using my tubes to control my flight. In reality, I just had to lie there, and be helped with every single thing, whether it be with the usual bodily functions, to get out of the bed and into a chair, or to have secretions sucked out of the trach for me (which hurts, by the way). Every shred of vanity or pride I may have had I lost in that bed. I was every bit as helpless as an infant — more helpless in a sense because infants can holler and I couldn’t utter a sound because of the trach. I lay there for three days at which time I was moved to a hospital bed in the cancer tower.
Good news came to me as I lay in that bed, however. Before I left the ICU, I learned that the cancer had not yet spread to the underlying bone or to the lymph nodes. The surgeons had got it all out of me. So no radiation or chemo for me! What a blessing!
My room in the Cancer Tower was a much more soothing environment than the ICU. I had a window, a bathroom, and nurses that checked on me frequently. At first, I still needed a lot of help just to get in or out of bed. I was so weak I couldn’t lift my legs. But gradually, the tubes started disappearing. The catheter went. A week after surgery, the trach was also gone and the feeding tube. My arm was unbandaged and later, stitches were removed along with the drains. The stitches in my neck went at the same time. Finally, I was free of IVs. This was all good because I was supposed to be getting up and walking — much easier without tubes. I walked slow laps around the floor with a walker, always with a nursing assistant.
Due to Covid concerns, the hospital limited me to two designated visitors during my stay, one being my sister, the other being a friend. But mostly I passed my time by reading cozy mysteries on the Kindle app on my phone. (It was that or dystopian science fiction — it seemed wiser to go with cozies.) A series called The Country Club Murders by Julie Mulhern got me through the time when I wasn’t sleeping or being kept busy by nurses or therapists. I read eight of those books while I was there. I recommend them for escape while under stress!
Two weeks after surgery, I got to go home. My sister had made sure that there were safety bars in the bathrooms for me. I moved around with a walker but quickly graduated to a cane with physical therapists’ help. I can now walk to the park and back using my cane — about a quarter mile. I do get tired but I am healing. One additional little problem that came from the surgery is that a nerve was irritated in one leg, probably from the way I was positioned on the table. It’s still bugging me but it’s supposed to go away with time. I am managing.
The flap in my mouth is still very fat and I am limited to eating puréed or very soft foods. In coming months, the size of the flap will be reduced by a procedure. In time, my teeth will be replaced by a denture or maybe implants. I will be able to eat normally again. Someday. Just not now. Pain? I am taking over the counter pain meds as the packaging recommends and I’m staying ahead of the pain for the most part. Nerves are bit by bit beginning to wake up — numbness of the whole left side of my jaw and head was an effect of the surgery.
So that is my story of my taste of cancer. I say a taste because I am the rare oral cancer patient who does not need radiation or chemo — how lucky was I that the cancer was removed before it could spread to the bone or the lymph highway? I am so damned fortunate in that and I know it. I was also extremely fortunate to be in a State with the Medicaid expansion, giving me access to top notch care. My surgeons were nothing short of amazing and the hospital took excellent care of me. My gratitude is boundless.
Yes, I’ve been spared much of the ordeal of cancer. I will, however, have to be watched over the coming years to make sure it doesn’t happen again. That’s a part of being a Survivor that I have yet to experience— because it will be a much closer surveillance than ever before. There are emotions that come with this kind on uncertainty, another part of Survivorship that I will get counseling for. Being a Survivor is a very new thing to me.
I cannot close without saying this: in this journey, I learned firsthand what special people nurses are. They have an often thankless job — but I am so grateful to all the nurses and health care aides who helped me get through the worst of this. I was helpless and they helped me.
Thank you to everyone for your kind thoughts and support. I fully believe that I have healed as well as I have because of community support. It’s a special medicine like no other. Like magic. Truly.
With love,
Sara
