On to the medical update…
Besides dealing with the recurrent depression, my biggest struggle I would have to say are related with my throat. One is a cough that just won’t go away and the other is swallowing issues. I had mentioned both to some doctors in the past, but it kind of often got forgotten by the time we had managed to get through the rest of my medical complaints.
In September, I switched Family Physicians again. The last one was just too far away, and the one before that needed me to make appointments a week in advance, which doesn’t help me when I need to see someone either the same day or the next. So I decided to switch. On my second visit with this doctor, I mentioned my cough, that even though my cold was getting better, was still getting worse or at least wasn’t improving. I also mentioned the swallowing issues and he recommended I should see my Ear, Nose and Throat specialist to see if he may have some ideas.
Once I returned from my trip to Indianapolis and Ontario, I saw this doc, Dr. A. I have been seeing the same ENT for about 8 years now. At first it was because I had nosebleeds that just wouldn’t stop and I needed to get a few of the vessels cauterized. He also felt very bad that he hadn’t noticed my thyroid issues when I first told him about my diagnosis. This time around, he gave me a questionnaire to fill out to see if my cough was nerve related or if it was reflux related.
Turns out its a bit of both. The way he explained it to me is that after radiation and surgery and everything that has happened in my neck region, there is a good chance that one of the nerves (Vagus nerve) is so irritated or inflamed, that it is the reason for my persistent and annoying cough. When I say persistent I am talking almost a year and when I say annoying I mean being so bad that I almost vomit. 80% of the issue is apparently based on this nerve and 20 % on reflux.
Here we were starting me on 2 new medications. One of which, Gabapentin, I have given as a nurse before, but only ever to epileptic patients to control their seizures or for chronic nerve pain. You might imagine me questioning if this was really the best drug of choice to treat a cough. After getting a second opinion I did end up starting on the medications, but since then have had to tweak the times I take it because I just feel like I have such bad brain fog some days that I am having a hard time concentrating. The cough seems to have improved, the swallowing however, different story, more on that a little later.
As usual, the few days before I go for a scan, I often have moments in which anxiety just washes over me. There is nothing I can do in those moments, but try and focus on the fact that the last 3 scans have been decent, if something has grown I can’t change it anyway, God is with me and he’s got this.
This time my scan was bright and early at 7:45 am on October 30th. I think I like the early ones. At least I can actually sleep during the hour I am sitting in the dark room waiting for the radioactive sugar to be absorbed by the cancer cells in my body. Usually I just sit there and try to occupy myself as to not to think too much about what the results might be. However I am not allowed to really occupy myself with my phone or even a book, I’m just supposed to sit there.
I made the day super busy for myself, which probably also helped keep the anxiety in check a little better afterwards.
After the scan, I ended up going to our Ladies Bible Study at church, making sure I didn’t come close to any small children or pregnant ladies, you never know how radioactive I really am those days.
Tuesdays are usually one of my busiest days, but for this one I made it extra busy for some reason. With the scan and Ladies Bible Study done, I moved on to my exercise study that I have been enrolled in.
This study focuses particularly on cancer patients with head and neck cancers. Participants are then put into 2 groups. One group does only head and neck strengthening exercises, which is the group I was assigned to, the other group does both head and neck exercises plus full body ones. The goal of the study is to see if it makes a difference in overall health and fitness level, how patients are being rehabilitated after this kind of cancer.
I have met some very inspiring people while participating in this study. It has also helped me to put my own progress and how well I am doing into perspective. It is easy to complain that, well this is wrong and this is not quite right. Looking at some of these other patients who have lost their voices, can barely open their mouths or turn their necks, however, I thank God for how well I am and how amazingly he has healed me.
Another appointment later and I was finally done for the day and was sitting at my moms kitchen table for dinner.
Two days later on Thursday, November 1st, I made my way back to the Cross Cancer Institute for my follow up appointment with Dr. W.
Going there always feels a little weird. I get many confused and curious looks from people. Probably because I am younger than most people there by at least 10-20 years, but I also don’t look like a ‘typical cancer patient’, at least that what I assume is going on. Sitting in the lab area to wait to get my blood drawn, I catch many of the other patients and family members studying me. So most of the time I just keep my head in my book or sometimes give a smile back.
The appointment itself went fairly well. Jeff was planning on meeting me there but was unable to since his work was very busy. Especially when I am there alone, I pray that the results would be somewhat decent and not leave me devastated, having to call my family and bring out the news in between sobs (we had that happen a few times which is now the reason I text Jeff “nothing bad” before I call him).
This time the news was, well, mediocre. Some of it was great news, some was concerning news, but overall it was decent. My blood work has barely changed which is a huge relief, since that means that even if I have new areas of concern, they aren’t excreting much Calcitonin which means those areas aren’t as active in growing yet.
However on my scan, we found a few areas of concern. The tumor on my sternum (breast bone), which has been there for almost 1.5 years, has not changed. Praise the Lord. My right underarm however was a different story. There are at least 2 lymph nodes that showed up as having picked up some of the radioactive sugar. This can mean 2 thing and we are hoping and praying its the better one. First, it could mean that cancer has spread to my underarm, which wouldn’t be super surprising since I had extensive lymph node involvement. The second option would be, these lymph nodes could be reacting to something else, such as a cold or even the flu shot which I had gotten a few weeks before the scan in that right arm.
How will we know exactly? Well, I have to go for an ultrasound next week, November 21, 2018, to assess if they are still enlarged and if so, if it is because of a common reason such as a cold or the flu shot, or if we need to do a biopsy. If we do and it comes back positive for cancer, I will probably have another surgery early next year.
Another problem that I had been marking down on my intake forms every time I went to the Cross Cancer was that I am having difficulty swallowing as I had already mentioned above. Over the last couple of months it seemed to get worse and worse. At one point I was trying to swallow a Tylenol pill for a headache, it got stuck in my throat so badly, that I spend almost 30 minutes in the bathroom trying to either gag it back up, drink it down or force it down with different neck movements. Nothing helped until I decided to have a couple bites to eat, which seemed to push it down. I was very close to a panic attack which prompted me to really start looking into getting some help for it.
Dr. W. made arrangements for me to get a gastroscope done with, yet another, Dr. W. pretty quickly. I already had the first one done on November 8th. If I am understanding correctly the paperwork he had ready for me afterwards, I am the lucky winner of a rare side effect of radiation which is esophageal stricture. For everyone who does not have a medical background, that means that my swallowing tube is narrowed which is why I am having issues swallowing and often choke/have food stuck in my throat.
Dr. W. (the second one), after putting me to sleep, took a look with a camera and after finding the narrowing, balloon dilated the area (stretched it out a bit). Because it is a very sensitive area, he isn’t able to open it up to the right size right away, since it could otherwise lead to tears and bleeding. This will be the reason why I will be having at least 1 more gastroscope but probably a lot more. He explained to me that he usually does at least 3 to treat an area like this but often needs more than that.
With the gastroscopes and the ultrasound, the next couple of months promise to be just as busy as the summer was, just not with as many fun things.
Now you are all caught up 🙂
Please feel free to ask me any questions in the comments and I will do my best to answer them for you.
Thank you again for everyone who keeps me in their thoughts and prayers. They truly are appreciated
