Follow up post radiation treatments
On November 8, 2016 I had my follow up appointment with Dr. J. to get the news how everything looks post radiation. The next day I was supposed to fly out to Toronto, meet up with Annika and go to Disney World. Jeff was working that day. He talked to his supervisors though, and was allowed to meet me at the Cross Cancer Institute (CCI). He joined me and my mom there. We were all very up beat expecting to hear good news but yet preparing for the worst.
The appointment started of like always. My weight was taken and I spoke to a nurse about how I had been feeling and any issues I was experiencing. I mentioned that eating had become a struggle again since I had stopped taking the Dr. Akabutu’s mouthwash. She made sure to write that down for Dr. J. to address. When he came in he examined me, my neck, mouth and throat. He seemed to be very happy with how I had been healing. I was promised to get a prescription for more lidocaine. Hopefully that will improve my eating habits again. Then I asked about my blood results…
First Results post radiation
He just said: ‘Your cancer markers in your blood are still detectable. I would like them to be a little lower’. Since I have been meticulously tracking those numbers, I obviously asked what it was. His resident went to get a print out the latest blood work since it wasn’t actually in the chart. That’s when the gut punch came.
Just to remind you of the trend: Before surgery my levels were 2800. Post surgery they dropped down to 1200 and continued to fall to 943 at its lowest. Right before we started radiation we did another test and it came back slightly higher at 977. When I heard him say they are still detectable, I was expecting something around maybe 500-600. I was not prepared to hear 1283.
1283!!!
Not what I expected
My calcitonin levels hadn’t gone down at all but climbed. It was back to more than right after the surgery. I just sat there staring at the paper showing me this number, totally confused. The radiation was supposed to bring this number down to (best case scenario) 0 or undetectable. At the very least it should have gone below 5. As I tried to make sense of it all, I asked Dr. J. what that meant. I probably will never forget the look he had on his face for the rest of the appointment. It was an expression of defeat. My German speaking readers will understand when I say Ratlosigkeit. Which basically means he looked like he did not know what he was going to do for me further.
Out of my periphery I could just see my mom starting to cry while Dr. J. explained what this increase could mean. I don’t remember exactly what he said word for word but the gist of it was, it looks like the cancer spread outside of my neck. Since there is no way that anything survived the aggressive radiation treatments they put me through. So, it now had spread and was growing, but they had no idea where it spread. Since my last PET scan was completely clean, he suspects that new tumors are small enough to not be picked up by scans. They are still there and growing and increasing my levels. It also has the potentially to spread to other places.
Overwhelmed, yet prepared
Well what do you do with that information? I was so calm though. The week before, I was very nervous about the appointment. It was to the point that I was very grouchy to the people around me. My mom had asked me what was going on and I just said I was nervous. What I didn’t really say was that I was nervous that exactly this would happen. That the news would be bad instead of good.
I can’t explain to you why I felt this way. The only explanation is that God was preparing me for what was to come. When I talked to Jeff about it afterwards he felt the same way. We had conversations leading up to November 8 about how we would handle if this was the way it happened. What we would do if the cancer wasn’t beat or if it came back at some other time.
So, in some way, we were prepared. My mom on the other hand was not. She took it the hardest out of all of us I think. It makes it a little more difficult for me as a daughter. How do you comfort and help your mother when you are the reason to cause her so much heart ache?
Where do we go from here?
Dr. J. explained when I returned from my trip, I would have another PET scan. He expected that one to be clear as well though. I asked him what we would do then and he basically didn’t know what to say. He mumbled something about waiting for it to grow until we can see it. He did say that radioactive iodine was out of the question now though.
I guess there was good news after all, since I was conflicted about not wanting to do that treatment anyway. Once the tumor is big enough to be detect, we will determine if I can have another surgery or if we find some other treatments. Treatments like more radiation or chemo to fight against the tumor wherever it may be.
According to Dr. J. he suspects it to have gone to my lungs. However, he could also be completely wrong. As he walked out to get my prescription, he pulled me into a hug, before walking out. He mentioned he didn’t want to share this with me yet, since he knew I was going on vacation. He didn’t want to ruin my trip, because I had asked though, he shared.
Once the doors closed I did cry. Jeff sat right in front of me and comforted me. I could see just how much this had hurt him too. After I got the prescription and everyone left the room, Jeff, mom and I sat for a while. All stunned, unable to comprehend what just happened. My mom was crying a lot and I just said “you weren’t prepared for that at all were you?” and “Don’t cry. It will be all right”. We left the room and just sat outside in the waiting room for a bit longer.
Feeling all the feelings
Jeff was still supposed to go back to work, so we were trying to figure out what to do. Figuring out if he could take another day off work and just be with me that day. My mom went to the bathroom and that is when I kind of broke down the most. I told Jeff I was scared that this was going to kill me sooner than any of us had anticipated. I can only say it again, I am not scared of the actual dying part, I know where I am going. However, I am so scared of missing out on life and also having Jeff and my family go through that.
We just watched my moms cousin bury their daughter a year ago. She passed away from Leukemia. She was only in her 30s and left behind a husband and a 7 year old daughter. It just breaks my heart to imagine my loved ones having to go through the same thing. Jeff just talked to me and ensured me that we were going to do everything in our power and Gods power to fight this thing and beat it, God willing.
When my mom came back we were composed. We walked out and Jeff went to go call his supervisors. My mom and I sat down in the front lobby and waited for Jeff to come back and tell us if he was coming home or not. When he returned and told me he was coming home I was so relieved. Jeff had to go back to base with his partners to get his car and everything, so I left with my mom to go to the pharmacy to get the prescription. I wanted to have it for the next day when I was leaving for my trip.
Before we left the CCI the family friend battling cancer also came in for her appointments. I think saying it out loud always makes things a little more real, so when I told her the news wasn’t looking too good, we all cried together again.
A day like any other
By the time we finally found a pharmacy that carried the medication and got back to my parents place, Jeff was already there waiting for us. We had some lunch and talked a little more about what we just heard and what we would want to do from here. I just wanted to make sure that all of our family members knew about what was going on. Jeff luckily had already started doing that by calling his parents and his brothers and telling them the news.
I felt completely calm, devastated and uncertain of the future, but calm. I also had my trip to look forward to the next day. Sitting there with Jeff and my mom just felt like that was how the day was supposed to go in the first place. After a while Jeff and I left to go home and then went to go see a movie. It was a great distraction. Once the movie was over, we went back home so I could finish packing. Basically, that was the rest of our day, packing, sitting on the couch together and talking about our options.
Alternative treatment options
A few days before we got the news, I sent Jeff a text while he was at work. I asked him to start thinking about how we would react if the news we would get wouldn’t be good and also how he felt about going a naturopathic way of fighting the cancer. I had heard from some people about IV Vitamin C therapy that has been useful in cancer treatments. Once we got the news, we discussed it again.
I know often times health care professionals are known to not do a lot of alternative things like naturopathy. However, as we have gone through this process and the more research I am doing into cancer, I am starting to lean more and more in that kind of direction. When we first started the whole cancer journey, we were very open to all kinds of treatments. Western medicine as well as natural remedies.
As I have explained in the previous posts I have been using some of them already, but now I feel like I would like to add a few more things to make sure I am doing everything I can to fight. We have a family friend who was diagnosed with stage 4 cancer and has not used any western medicine to treat it but did a radical diet change and natural supplement. Now over 3 years later the doctors are baffled since they can’t find any trace in his body that the cancer was ever there. I believe that with prayer and everything else I could try, there is a chance to beat this cancer once and for all, God willing.
Even in hard times family is there
That night we went to Red Robin since we wanted to kind of have a family dinner since Ines was working a shift that day. Melissa and Andrew had already left for their mission trip to Bolivia so they found out the news over text. Anyway, my parents, Jeff and I went to Red Robin and Ines served us. It was a really nice evening. We spend some time talking about the news we got but mainly had just a good family time. We shed a few tears and shared some laughter and all said good night and good bye… see you in 10 days :).
So that’s were we are at right now. Waiting for another PET scan and potentially more scans and tests. In the meantime I went on an amazing vacation, which I will share in my next blog post. Plus I am doing some more research on naturopathy and other options. Thank you everyone for being by our side through this, praying and supporting us. You have no idea how much it means to us. God bless you all.
