It’s been a long couple of weeks. Since last writing, the first step I took was a PET scan. This test lights up areas of concern. In my case, they were looking for the origins of the cancer they found in the lymph nodes in my neck. And it did. After that test I went and met with the ENG surgeon Doctor Tasche. She said that there was no cancer below my neck which in itself was a relief. She said something lit up in my mandible area. She did a biopsy on the area to confirm the cancer was in that area. Waiting for the biopsy results was overwhelming. I spent a lot of time crying, waiting and crying some more.
In the mean time, I met with my medical oncologist Doctor Price. She talked to me about chemo and the general idea as to whether I’ll need it. I won’t find out what needs to be done until later. The next step was to see the dental specialist so that I would know more about what could happen inside my mouth. And what they could do to reconstruct my teeth.
This past Friday, I got the results of the biopsy in a phone call from my surgeon Doctor Tasche. We had quite a long conversation about everything that it means. On Monday the third, I had another see ct scan. It was to see if anything had changed since my cat scan a month ago. It was also to see the shape of my jaw so they could reconstruct it.
On Tuesday May 4th, I met with Doctor Tasche and Doctor Van Abel and had a third CT scan. Yesterday I met with anestesia t0 determine whether I was healthy enough for the next step. I’m exhausted. I’ve spent a lot of time crying. I am angry, frustrated, terrified, and things are moving very fast.
The next steps are scary, but need to be done. Major surgery. 12 hours long. They will remove tissue and part of my lower jaw. They will surgically remove most of the lymph nodes from my clavicle to both ears. I’ll have an incision that will look like a necklace.
To do all this, I will also have a tracheotomy so they can work in my mouth. They will also place a feeding tube. I’ll go home with the feeding tube. After removing the cancer which hopefully won’t involve the tongue, the longest part will begin.
They expect a lot of swelling that is also the reason for the tracheostomy. I will be in the hospital for at least 5 days. I won’t be able to talk for awhile. I won’t be able to put weight on the bone donor leg. The feeding tube is so that nothing bothers all of the microsurgery. I will also have new teeth. They expect me to be in a lot of pain. All my meds in the hospital will be administered through the feeding tube or IV. I will go home with a boot on the donor leg to help support the ankle joint and help keep the weight off of it. I will also go home with the feeding tube. Hopefully, that will only be for an additional week.
I have one more test on Monday, an ultrasound of my thyroid and a possible biopsy. The doctors saw some sort of nodule or calcification on the thyroid. They will also look at the lymphs next to the thyroid which thus far aren’t affected. But if they find something on the thyroid all of this will be taken care of during surgery.
Today is Thursday May 6. My surgery is in 5 days on Tuesday. Getting through the next few days is going to be difficult. On Monday the 10th, I have the ultrasound, my millionth Covid test, and I meet with the radiation oncologist. They send tissue out during surgery and bone as well, I know I’ll need radiation. We’ll find out from the results of pathology as to whether I’ll need chemo as well.
I am terrified. I’m not sure of anything. I hate feeling so out of control. On the other hand I feel like the luckiest woman in the world. I have Bruce who loves me, my stepdaughter who will be coming in on the 17th (hopefully home from the hospital then). My stepson Brent sent us a GrubHub gift so we don’t have to cook dinner every night. Bruce’s family are wonderful and supportive. So are my friends including Angela, Susan, Eileen, Christine, and others, my cousin Tracy, my brother Shane, even my stepkids’ mom Michele. I am lucky to have all these people who love and care about me.
I am also really lucky to be at Mayo, the best medical facilities and staff in the world. The coolest thing is all the female medical surgical, dental and oncology team I have. 12 hours of surgery requires multiple surgeons. There are 2 female lead surgeons, Doctor Tasche and Doctor Van Able. There is also Doctor Silvers, physician’s assistant Lizzy and more that I haven’t met yet. Not sure about anesthesia, but my dental team leader is female and so are the radiation oncologist and the chemotherapy doctors.I have faith in my medical team. Tons of it. But that does not alleviate the fear and anxiety. I am not looking forward to 12 hours of surgery, weeks of recovery, then 7 weeks of radiation and possibly chemo.
I am trying to focus on the future. My daughter’s wedding, and the birth of our second grandchild-a boy due in October. Trips with Bruce, eating an Apple with new teeth, being able to do more things.
I am trying to focus on the future. I will have to be concerned about my nutrition. If I start losing too much weight too fast, I’ll wind up back on a feeding tube.
5 more days.
Eyes forward always.Me.