After my last blog post, many have been asking about how things are. Especially how planning for treatments is going. So, here is finally an answer, finally some news. I wanted to wait until I had some more before sharing about everything. Lets just put the best news right at the beginning.
The cancer has NOT spread!!! Praise the LORD
Scan Day
Last Wednesday, August 3, 2016, I had my very first trip to the Cross Cancer Institute for my PET and CT scan. I have to say its weird walking into that building. Its a health care institute like any other, but yet so different. Every person I walked passed, I was wondering what had brought them to this place.
It is not really a place you ever want to have to go (unless you work there of course). I saw patients who looked like they had been through a lot already. I was wondering if one day, that would be me. If someone coming for their first appointment would see me and think the same thing.
Jeff was working but met me at the Cross and took me to where I needed to go. First, I had to get myself admitted. There I got my Cross Cancer card (a card I have to present every time I go there). Jeff left to go back to work once the nurses called me to the back for my test.
First Scans
I sat down in a chair made to start IVs and draw blood. I got my fasting blood sugar done and then just sat for quite a long time. Apparently, for PET scans, timing between patients is very important. I was waiting for the patients before me to finish with their scan before I could get anything else done.
When the nurse came to start an IV they explained to me that they would be injecting me with radioactive sugar. After, they put me into a completely dark room. I would be there for an hour. That way the sugar would have time to attach itself to any residual tumors or any metastatic tumors. I was not going to be allowed to do anything except sit there and drink the oral contrast I also had to consume.
One hour later, I would get the PET done first and then follow up with the CT dye and the CT scan. However, what they all didn’t realize, was that my vein access is almost non existed and getting an IV usually takes a little bit of time or multiple pokes. So, when she went to look for a spot, she couldn’t find anything, not even the spots that I usually point out that work for access.
Out came the hot blankets and hot packs. After I sat with all of that for about 10 minutes she looked again and found a spot. She even got it on the first try. I was led into a back room with a comfy recliner. The technician injected the radioactive sugar and left me with the contrast to drink.
Waiting in the Dark
An hour can be so long when you’re not allowed to do anything. I sat, drank your gross drink and was left to my thoughts. I don’t even know what went through my head but all I was trying to do was go to sleep for a bit. Hoping the sugar could go everywhere and attach to everything so we could get the best result in the scan, but alas, my mind was racing. After the hour was finally up a nurse came and got me.
I was put into the machine and the PET scan was underway. Once that was done, the technician came back into the room and hooked up the CT dye. I don’t think I have ever felt that kind of pain when fluid was being injected into a vein then that day. I could feel the dye going in all the way up my arm, but luckily it wasn’t all that much and didn’t take to long to inject. That test was even shorter than the PET scan and after that I was good to go home.
Meeting the Pre-Team
Today, August 11, 2016, I finally had my first appointment with an oncologist, Dr. J. When we got to the CCI we were send to the radiation department to wait to talk to the doctor there. This was news to us. I mean that we would meet with a radiation physician as my first oncologist.
A nurse took us into a room and did some preliminary questions and just the usual admission things, like height and weight, medication lists and what not. Since I am taking so many different oils and other DoTerra products I just decided to take everything with me in a Ziplock. She took everything to write it down in my chart. Next, the resident came in to ask questions about how everything started and how I was feeling pre operatively. He wanted to know how much had changed now since surgery.
I had looked up my oncologist on Rate my MD just before the appointment. I am not sure if that was a good or a bad idea. Things like: ‘He is a great doctor and makes appropriate treatment options, however doesn’t really answer questions and doesn’t understand why a patient would want to know certain things.’, were comments I found.
Meeting the Oncologist
I was getting very nervous walking into the appointment with him. One thing I struggle with the most are the unanswered questions. After he had explained the treatments to me he asked if I had any questions. I had so many! I felt brushed off when I asked many of my questions.
A lot of my questions are about life after the treatments are over, say what my future will look like, what kind of side effects I could expect from all the treatments. His answer was basically: ‘That’s not my focus right now, my focus is your disease and fighting it’. Which, I totally agree with, but I still found it frustrating that he didn’t want to answer the burning questions for me.
Overall, I think he will be great doctor for me and will treat me the right way, I just hope he will familiarize himself a little more with my chart, my labs and such. He was going to sent me for more blood work and another urine test, because he hadn’t checked what I already had done pre- and post op. I think right now I am looking forward to meeting with the other members of my health care team to form a cohesive plan that involves everything in my life, not just the cancer (although that is of course most important right now).
Immanent Treatments
As for treatments suggestions I am going to have to do radiation, quite aggressive radiation. When Dr. J. explained it to me he was said he usually shies away from doing such extreme radiation therapy on younger patients. However, he doesn’t see any other options to treat me.
I will be getting 30 radiation treatments. They will be Monday-Friday except holidays. I will be going to the CCI every day for at least 6 weeks. After all the treatments are finished, I will have more tests to see how the cancer is looking. If at that point there is even anything left. If so, I will probably have to start on some sort of chemotherapy, either targeted or systemic. But we are hoping and praying that the radiation will be enough.
Because of the high lymph node involvement, my cancer is considered quite advanced, With that also comes a high possibility of microcells being present throughout my entire neck, which is why he would like to be so aggressive. Since those cells are very hard to see on any tests that they could preform, he would like to just treat them as if they are there.
Expected side effects
As for side effects there will be a few that will only effect me while I am actually getting the radiation and some that will be permanent. The radiation will be from the level of my ears to my chest area, because the lymph node involvement was so high up. In the first 3 weeks I will probably have minimal to no side effects at all.
After that it is very common to get a very sore throat. Also, the radiated area will first look like a tan and then turn to look like a very bad sunburn. At this point I asked Dr. J. if this is will have an effect on my scar, since I am trying to keep it out of the sunlight now already. It was one of the questions he didn’t really answer even after Jeff and I had both asked a couple times.
As for the permanent side effects, I will have a lot of issues with dry mouth. My salivary glands are right in the field of radiation and are very easily affected by the same. I will be losing around 70% of them. Dr. J. explained to me that unfortunately since my cancer was on both sides, there wasn’t anything they could do to spare those glands. Dental treatments, such as root canals or tooth extractions, I will have to go into the hyperbaric chamber before and after. Otherwise I could potentially have major complications to my jaw bone.
All in all
Overall, the news has been amazing and God has definitely been answering prayers. On Monday, I go for more blood work. I will have another CT scan with a plastic mold that will also be made on Monday. The mold helps prevent me from moving my head in even the slightest way during radiation treatments. That way it is ensured the same areas and the right areas are radiated every single time.
Thank you again for everyone’s prayers, God is great and he does answer!
