Anxiety and Peace
Two emotions that are almost impossible to be feeling at the same time, but can also go hand in hand.
Two emotions that have basically been my steady companions over the last 6 months. Each washing over me with with full force in its own timing. Usually first anxiety and then a peace I can’t even explain.
Looking back on the last few months, a rollercoaster of frustration is the best way to explain it, with amazing ways how God got me out of my lowest lows.
Most of the lows have been related to the same issues I mentioned in the last post. Having to do everything by myself and being the only one advocating for myself. Well and feeling complete left helpless.
First I have to clarify that I really like my oncologist on a personal level. He has always seemed like he cares a lot. I even ran into him once after at a different hospital where he was there for a family member, but he stopped at my bedside to talk to me. Like I said, he is very nice as a person.
On a professional patient/doctor relationship however, I have to say I am very disappointed.
One day after my last post, I finally received some sort of communication from my oncologist booking me in for an octreotide Scan. However after I had booked the F-Dopa Scan, I called to canceled the octreotide Scan, because I don’t believe that one to be helpful to begin with. I did do this Scan about 2 years ago and it was completely negative, which means that it doesn’t show my cancer AT ALL. That was the reason I decided that I didn’t want to put myself through another radioactive scan, when its almost 99% likely that it won’t show anything.
When I cancel appointments, my oncologist doesn’t get notified. So I attempted to call somehow and leave a message, which after multiple phone calls I was able to do.
I never heard back that he was aware of the cancelled appointment, nor did he get back to me on any of my other weekly, or sometimes twice weekly, phone calls.
After about a month of calling, I finally managed to get an email address for him and emailed him an update on what was going on with me in the last few months and what I had managed to get organized.
As I had mentioned in my last post, there is a clinical trial for a scan called F-Dopa that I was able to get into. At the beginning of April I was able to, within 2 weeks of finding out about it, have it done very close to home.
It works very similar to all my other PET/CT scans, where I get a radioactive tracers injected into me, then sit for a certain amount of time to let it spread through my body and then get the scan. The only difference with this one, was that I had to lay on the Scan table for a bit longer and had 2 rounds of scan. The first round is called a mapping round, where they make sure I am in a good position and they would be able to get the pictures they would need. After the tracer has had time to spread, I get scanned again for the actual diagnostic images.
This scan is much more sensitive than the ones I have had in the past. The research assistant asked me at one point what I was hoping to get out of the scan. Honestly for most people they would want a clean scan. For me that would have been the worst case scenario since that wouldn’t help me in making a new treatment plan. However if you think about it, I wanted the scan to show more Tumors which is usually not something people want to see.
Well, I got my wish. More Tumors were seen with F-Dopa. Along the left side of my jaw, neck and mostly left clavicle, we found at least 6-10 reactive spots, including some closer to my lungs. To be more precise on either side of the main bronchi. Nothing crazy big or particularly worrisome, but at least we know there are some spots.
I also relayed this information to my oncologist. His answer towards these results, made me realize, how little he probably understands about my cancer.
As I have said in the past, the best and most curative treatment for me, is surgery. Yes it probably won’t get rid of everything, but it will get rid of enough, that it will give me more time. More time means possibly more treatments that can be researched and maybe even a cure to be found. My oncologist way of thinking though is that since we won’t be able to get it ALL there is no point in doing surgery and he wants me to start on medication.
Again this is something that I have said I want to start as late as possible, because I will be on it for life, have the side effects and have to change a few of our life goals and plans.
I was slightly upset at a response like that and decided I wouldn’t answer right away, as to not answer in an angry way and just to wait until I had a few more of my ducks in a row.
Which leads me back to figuring out a way to get a gallium 68 Scan.
Both scan options in Toronto fell through within a few days of my last update. Not because they wouldn’t take me, but simply because it was the wrong scan. I didn’t know that there are multiple forms of a gallium scan. The plain ‘gallium’ Scan looks for thinks like inflammation and lymphoma and would be completely useless to my situation.
This was the only scan offered in Toronto however. No gallium 68 exists, where patients can be referred to in Canada at this time, outside of Quebec.
I started the search and research in regards to going there. What would I need? How much would it cost? Are there any options to have it paid for? Are there any other options in Canada, US or other countries that might be cheaper?
All these questions let me go find out that there was indeed another gallium 68 offered in Canada in Vancouver. I filled out all the paper work, got everything ready, but before I faxed everything I just wanted to call to make sure I had the right number.
When I explained why I was calling I was told that I shouldn’t bother sending my information to them, since I don’t live in BC, I don’t qualify to be even considered for this scan.
With that knowledge my only in country option would have been going to Quebec. The research and question I got answered, subsequently let me to a staggering amount of money I would have to come up with in order to go to Quebec. Even then it was very questionable how long it would take to get in and how long it then would take to get the results translated from French to English.
As I was at work one day, I asked one of the doctors I work with (who is originally from Germany), if he knew of a place in Germany that offered this particular scan. He helped me find the right wording to finally get results in my google searches.
I emailed the head of nuclear medicine in a University hospital very close to my home town in Germany, in Bonn. However I never really heard back from him.
At the beginning of April, one of my aunts came from Germany for a visit. While we were talking she asked if she should have her daughter-in-law try and make a phone call to the clinic in Bonn, since she works for a hospital herself.
We agreed and a couple days later I was communicating with the ‘International Medical Services’ to see if it going to Germany was an option and to get an appointment set up.
Due to the time difference it was always a bit complicated to get a hold of each other. Anytime they were actually working in Germany, I was sleeping. It was a slow process, but after multiple emails and phone calls, sending all of my latest scans and bloodwork results as well as a large sum of money (as a deposit), I finally received an appointment in Germany for May 28th.
I had originally asked them to make sure that I could come in the week of May 13th because my family would be in Germany anyways and could be a huge support for me. Not that my family living in Germany wouldn’t be a support for me, but it’s still different when it’s immediate family who has gone through the whole journey with me.
Jeff is currently doing some continuing education within Emergency Medical Services. He finished his in class part at the end of March. He did an in Hospital practicum shortly after and was waiting to hear back when he had to do his ambulance practicum now.
For that reason he wouldn’t be able to come with me to Germany, which gave me a lot of anxiety to begin with but with the blood work are all increasing without explanation, I really felt like I needed to go regardless of who could come with me.
I am very close with my family in Germany and even with my close family who would be there, but no one can get me to calm down as much and as easily as Jeff can. With my anxiety being at an all time high I asked him if he could call his school and ask them when they think he would start his practicum and also to explain our situation.
He has been sharing freely from the get go but with the changes happening right now I felt like maybe he should share again. Jeff didn’t want to cause waves with changing practicum placements, so he was a little nervous calling there. But they were so nice!!
He explained that if his practicum wasn’t gonna start anytime soon, he would love to go along to support me. After just a few conversations, everything was worked out and he got the go ahead.
From the moment they told me that my appointment was not going to be in the time that I had originally planned for, which would mean I wouldn’t see Jeff for over 3 weeks, to the moment that he got the ‘yes’ to be able to go, was just 12 hours. The plan then was that we would go for a while together, he would leave, I would stay for the scan and then fly back home myself.
Just over 24 hours after that, I got another message from Germany, saying that they were able to change the appointment to May 13 AFTER-ALL!!!
Such an answer to prayer!!
The day I got the first appointment was early Tuesday morning, right before I went for our Ladies Bible Study. I was feeling very down with everything, so I mentioned it to my group of ladies. They have been so amazing for me, praying for me and supporting me. As I was sitting there in tears, they came around me and all prayed over me.
In such a short time God worked miracles in a way that we could never have figured out ourselves.
On May 2nd I got the updated appointment and flights were booked very quickly and set to leave within less than a week.
Honestly I could not have organized any of these things the way they worked out. So I can only say that it’s God’s doing.
One week later, I ended up talking to a very good friend, Veronika, in Germany who I hadn’t talked to in a long time. Her mom had been diagnosed with breast cancer in November and was told that she doesn’t have long to live. She managed to get in with a doctor who had been very amazing and was able to help her so much, that after 11 chemo therapies, her Tumors have just about receded and there are only small margins left. 🤯🤯
My aunt had talked to her about potentially seeing that doctor as well. So my friend asked if that is something that I would like to do and if I would like her to call and make an appointment for me. Of course I agreed. She told me right away though that it’s usually hard to get in and sometimes it takes a couple of days to even get hold of the reception.
It was so nice to catch up with her. I really have to say I missed talking to her and sharing life together.
The NEXT day I woke up to a message from her asking me to call her when I got a chance.
Again I was on my way to Ladies Bible Study when I talked to her. Again I got to the point that this just has to be God led. Not only did Veronika get through to the clinic on the very first phone call, but the question the receptionist asked was ‘well when does she land in Germany’. ‘She lands late on Thursday evening’. ‘Can she come on Friday morning?’ 🤯
On May 8th, Jeff and I started on our journey to Germany to find more answers, opportunities and therapies.
God has blessed us beyond all measure. With people who love us, pray for us, help us financially, help us emotionally, let us stay with them, let us borrow their cars.
Truly blessed beyond our wildest dreams.
