Simulation

 Simulation

 

I recently went to Sloan to have my mold shaped for radiation.  I first was put through the Ct machine. I'm not sure if it was on or taking some kind of measurement or image. I didn't hear it come on, so I'm not entirely sure what it did. Then, they heated up, what seems to be a material similar to plastic, and they molded it to my head and shoulders. The material was very warm, bordering on hot. Thankfully, unlike the material at my transplant hospital, this material had a face cut out. If it didn't, I would have definitely been claustrophobic, as they strap the mold to the Ct table with clasps or clips. You are really pinned down. It is important that you don't move when getting radiation as everything is measured to the milometer. They did the mold while I was on the table of a Ct machine. They kept pressing the material against my body to make it as accurate as possible. It also needed some time to cool down while it was being molded to me, otherwise, they said it could shrink. When they felt it was cool enough, I was sent into the Ct scan and some images were taken. Then, they marked the mold in certain places with a marker. It took maybe a half an hour to do the whole process.

 Medical Oncologist/Radiation Oncologist/MRI

 

Two days ago, I saw the medical oncologist. He told me that the cancer that was on the parotid gland actually came from the skin cancer that was on my ear. He said before MOHS surgery, there had to be at least one cell that migrated to my parotid. The other doctors I saw, said it wasn't from my ear. However, he also told me the cancer was squamous cell cancer and that it would be ultra rare to just get squamous cell cancer on the parotid without it being skin cancer. He also said it was an aggressive cancer which I did not like the sound of. He told me they usually prescribe immunotherapy along with the radiation but in my case, because I had a double lung transplant, it wasn't an option. If i had only had a kidney transplant, they would still proceed, because I could always go on dialysis and get another kidney at a later time. The immunotherapy ramps up the immune system to recognize foreign bodies and attack. He also said that in studies, chemo therapy did not really seem to show much of a difference in terms of cancer coming back, it just makes you sicker, as it's poisonous.  It was a lot to take in. I told him I was scared and he said there was no reason not to be optimistic.

I then saw a radiation oncologist in a telehealth visit. I am going to Sloan Kettering for my care and he operates out of a different location. They wanted him to see me even though the appointment with him might have been scheduled as a mistake seeing as he's not from my center. He talked more about proton therapy, which is apparently a type of radiation. He said there isn't much of a difference in effectiveness but there are slightly less side effects than traditional radiation. He also mentioned it could be difficult to get insurance to cover it and there would be some hoops to jump through as the machine used to do the therapy costs millions of dollars and usually insurance doesn't want to pay all that money. I decided I'd rather just stick with traditional radiation as it's already been a long time that I've had this cancer and I don't want to delay treatment any further.

 I had another head and neck MRI with contrast, yesterday, as well, at Sloan.They want to check and make sure that no other tumors have grown. The radiation oncologist said the PET scan didn't really show any other tumors so he's pretty sure the MRI won't show anything new.  I took some calming medicine as I'm claustrophobic. I closed my eyes the second I was on the table. I was most scared when I first went in because you can see light and then it gets darker and darker as they put you into the machine. Thankfully the calming medicine helped and I felt I was starting to drift off into sleep a few times.

 I'm guessing I may get the results of the MRI tomorrow as I'm seeing yet another radiation oncologist, this time, from the right facility. 

 Radiation Oncologist PET Scan

 

I saw the radiation oncologist at my transplant center even though I had no intentions of doing radiation at my center as it takes us two hours to get there, and it's a headache to get to. He told us that the cancer had invaded the nerve and that the lymph nodes that were removed, came back benign. This was news to us. My surgeon never told us any of that. He also said he didn't think the cancer spread. That still didn't relieve my anxiety about it spreading. He told me I would need radiation for 6 weeks, 5 days a week. He showed us this plastic board that would be molded to my face and, I believe, upper shoulders. He asked if I was claustrophobic, to which I replied, "Yes." The oncologist said, I might need to have my doctor prescribe Ativan for the first week of radiation. He said it would take somewhere between 5-10 minutes. They don't want you to move at all, as it's targeted very precisely to hit certain areas.  He told me after the first week, I would most likely not have any side effects. However, he said that after that, I would feel like I had a bad sunburn, possibly have dry mouth, and have sores in my mouth. 

I called up Memorial Sloan Kettering, and I got an appointment to see a medical oncologist and a radiation oncologist for the 16th, and 17th of this month. They told me they would do the work of getting my reports and radiology images. This was a big weight lifted, as I wasn't sure how I was going to get the images to them. My surgeons office, who originally prescribed the MRI and ultrasound, was not too helpful. 

I had a lot of anxiety waiting for the PET scan and the results it might yield. I did a lot of grounding meditations and box breathing. I also made sure to get to sound bowl healing class and I spent lots of time with my family, to distract myself. My brother just happened to buy Dr. Mario for the original Nintendo Entertainment System. We used to play that a lot as kids, so we played that and we had such a fun time. I spend Friday afternoons and nights with my sister and her two girls and we always have a good time. I spent some quality time with my mom as well. 

The results came back that I did not have cancer anywhere else. This was on an unseasonably warm day, with temperatures in the mid 70's. It was one of the best days I had in a long time. I had just gotten things scheduled at Sloan, and then I got the news that the cancer hadn't spread. I went to the park with my niece, and we sat on a bench and ate a hotdog from the hotdog truck. I took a drive with good music and the windows rolled down, and then later went back to the park to spend more time on a bench just enjoying the weather. I had sprained my foot a while ago, so I couldn't walk around the park, so I did the next best thing. Being in nature is very grounding for me.

 Parotidectomy and Results

 

 

 

I began to be very hesitant about getting the surgery. The idea of possible facial paralysis really scared me. I began to wonder if, perhaps instead, I could just have the tumor monitored. I went back to the surgeon to ask a few questions. A new surgery date was set, but I still wasn't sure if this was the right course of action for me. I did some research online and I joined a Facebook group. Online I found it's the standard treatment to take the parotid gland and tumor out. In the facebook groups, several people had posted that they were told their tumor was benign, but when they biopsied it, it was actually cancer. They also mentioned, that if you just monitor the tumor, it has the chance of growing larger, making it harder to remove without nicking the facial nerve. They also said, that even a benign tumor has the potential to turn into cancer. With that information, I decided, yes, this must come out.

 

I was still quite nervous about the facial nerve before surgery. The hospital told us we needed to be there for surgery at 5:30. We figured it would take about an hour and half to get there and we got there just as the valet parking was open. We waited for a while.They took me back and I waited for some more time. Then finally it was surgery time. The surgery itself took 2 hours. The first thing I did when I woke up was to smile and blink. I thanked God that my facial nerve remained intact. I had to stay 4 hours in the PACU before I could go home. I'm not sure of why I had to wait and forso long. My mom and I ended up waiting an extra hour and half for a fellow to see us and see if my smile and blinking was normal. Then I was allowed to go home. All in all, we were gone for 13 hours! They gave me an ointment to put on the wound and some pain meds. I ended up never taking the pain meds as the pain wasn't great enough, most likely because everything was numb. I did have to eat very soft foods as chewing hurt my jaw as the muscle had to be moved and stretched to get the gland out. I'm still eating softer foods now, at a week and a half later.

 

(Stitches and drain)
 

 

(Stitches and drain out)
 

 

(Stitches and drain out)

  

I got the drain out two days after surgery. I also saw the surgeon about a week later to take out the stitches. He didn't have the pathology report as it hadn't come back yet. Two days ago, I got a call that the pathology report was back and it turned out the tumor was cancer. I was shocked and a little scared when I heard this news. I was told I would need radiation to treat the area. I also need to have a PET scan which I have scheduled for about a week from now. I have an appointment with a radiologist oncologist, next week. I want to get a radiologist oncologist, or head and neck cancer oncologist that is more local as I plan to do the radiation locally.  

Aspergillus

 Aspergillus

 

    Today I received a phone call from my coordinator and she told me that I have now also cultured aspergillus from my bronchoscopy that I had done two and a half weeks ago. I have to go back on posaconazole for 6 months. I'm thinking that this is the same infection that I was fighting about 8 months ago. I have only just recently gotten off of posaconazole. I haven't really been outside in a while due to the winter weather so I haven't been with leaves and dirt for a while.

 

 

Lymph Node/Salivary Gland (Parotid)/Bronch/Enterobacter

 Lymph Node/Salivary Gland/(Parotid)/Bronch/Enterobacter

    I ended seeing the senior surgeon for a second opinion. He did a biopsy right in the office since we were unsure if the first biopsy actually went into the right spot. The results came back as benign salivary tissue. In the meantime, I also went for an MRI with contrast. I just had an appointment with the surgeon two days ago and he explained that the parotid gland, which is the largest salivary gland, did indeed have a tumor on it. He said, looking at the MRI, it shows clear margins which is suggestive of being benign. He does believe it's benign but can't be 100 % sure. The surgery will take 2 hours. It would take a lot less time if there wasn't the problem of trying not to nick my nerve that controls that side of my face. This is the part that makes me nervous to get this surgery. He also said I will have a permanent numbness that may shrink a bit over time. The plan was to get surgery on Jan 6. While I was at the transplant hospital, I decided to get a pulmonary function test as I knew I would need to see my transplant doctor for clearance. I tried getting blood work and an EKG but, I waited an hour and still had 20 people ahead of me. So my mom and I left. I did end up having a video visit with my transplant doctor the next day. She said I couldn't get the surgery so soon because of my lungs. 

    So last Thursday, I had a bronchoscopy because I had a ct scan of my chest that showed the bottom right lung had more scar tissue. I was given the option of a bronch or going on Tobi. I decided a bronch because, one, I'm not sure I'm even sensitive to Tobi, two, I wanted to know what was up with the bottom right lobe, and three, my bottom right lobe had been feeling wheezy and tight and there were a few secretions there that I was having a very hard time getting up. I got very sick soon after I got home from the bronch. I had a fever of 101.9, I had the chills, and I was achy. This lasted two days. I was pretty sure the bronch would culture a bacteria since I had such a reaction The bronch results showed I had enterobacter. I was set to go on an antibiotic I had never done before. I'm also not sure I ever cultured enterobacter before. That was only supposed to be a 10 day course of IV antibiotics so, I figured I would still be able to get the surgery. During the telehealth visit, the doctor told me I also cultured Psuedomonas and would need to throw out the meds I had received and go on a different antibiotic, one I did have before. The doctor told me she didn't want me to get the surgery so soon. She said a month from now would be ok. She wanted to make sure my lungs were fully healed before going under general anesthesia. So the plan is hopefully for Jan 28.

Lymph Node/Salivary Gland (Parotid) Update

 Lymph Node/Salivary Gland (Parotid) Update

 

    I did get the biopsy of my lymph node done. Well, I should say, that was the plan. The doctor tried to biopsy the lymph node but couldn't, so he biopsied some tissue near my salivary gland. That tissue came back as saying category three, atypical. That didn't make me feel too good, I looked at the results through my my chart. The ENT didn't have much to say. He said the good news is it's not cancer, but it's not benign either. He gave some options like repeating the ultrasound to make sure it didn't get bigger, and monitoring it for a year, or getting a second opinion with the senior surgeon. I opted for the surgeon. So once again, back to the city to see the surgeon. The surgeon said he's not quite sure what to make of the results. He wasn't sure if the doctor had actually biopsied what we thought was a lymph node, or if he biopsied something else. He also said the results of atypical cells means they couldn't really get an accurate reading on the material. Right there in the office, the surgeon asked if I would let him do a biopsy of the supposed lymph node. I said sure, if you can, go for it. So as I was sitting, he cleaned off the area and proceeded to gather some fluid from the lymph node. At this point I'm still waiting for results. I also need an MRI of the site as the ultrasound didn't really say much. Unfortunately, the MRI is scheduled for the 27th, I believe, so that's a bit far off. After the MRI, I can schedule an appointment with the surgeon once again and see what all the results say. I feel like the ultrasound and first biopsy were all for naught; like I'm starting all over. I still hope for a good outcome.