26 hours after leaving our home, we walked into our new ‘home’ for the next few weeks.
My lovely aunt (Lida) hosted us for 18 days together with her family. Obviously spending time with family, is a huge part any time we go to Europe. Vacation kinda always takes a back burner, unless we have planned something out before we even get there.
This time around that was even more the case than usual. This time, my health was #1 priority and family time after that.
I left Canada with 2 appointments booked. Those 2 turned into 6. Which is was such a blessing in so many ways, but also restricted a little bit in the things we could do and maybe even travel a little further from my home town.
I ended my last blog post with having gotten the appointment with the oncologist Veronika set me up with.
After arriving late on Thursday evening, we got up early on Friday and made our way to Bonn (about 40-45 minutes from my home town in Germany).
Veronika and her mom (who is a patient of the oncologist we were going to) accompanied Jeff, Lida and myself there. It was really nice to first of all see her again but also catch up with them on the drive, compare cancer stories and treatments undergone, side effects we have dealt with and so on.
Most of the appointment went very well. Much of the information he was giving me, I already knew or at least had heard of, but he was also able to answer some questions and give some more insight.
To explain, currently my doctors in Canada have only ever offered me one specific drug that I could start and they would actually really want me to start. It’s called Vandetanib (generic name) or Caprelsa (brand name). It can get quite technical to understand the drugs, but basically what they do is block a certain receptor so that the cancer cells can’t grow anymore.
However, it’s not super selective to only attack cancer cells. It would have an effect on most, if not all of my cells, essentially stopping cell growth.
There are a few considerations why I am very, very reluctant to even consider starting these drugs. First of all, there is a very likely chance that after a certain amount of time (for some a few years to up to 15 years) this drug simply won’t work anymore and my cancer will have learned how to bypass these receptors so it can still grow. Usually at that point, it would become very aggressive and grow quickly and also most likely lead to a quicker death.
Another consideration is children. This is a topic I have kinda mentioned in the past, but in more recent posts, have only scratch the surface a little bit. Anyway, if I were to start these meds, children would be completely out of the question. Simply because the drugs would also attack a pregnancy, making it impossible to maintain and get through a healthy pregnancy with a healthy baby.
Many have suggested adoption at that point. That however brings a whole other set of questions, considerations and obstacles. I am currently considered a Stage IV (end stage) cancer patient. Adoption on its own is already quite difficult, so my question always is, which adoption agency would ever give a child to a mother who is ‘actively dying’ and considered palliative.
I know, I know, we are all dying, but it’s still a bit different when you actually have a diagnosis that will probably kill you at some point. Palliative is also such a big word with so many negative connotations to it. Truly though I believe there are many misconceptions when it comes to what it means to be palliative.
Yes, for some people it means there death is very imminent, however what it really means, or should mean, in a medical field is that the medical community, is attempting everything they can to improve the quality of life for a patient who will not be able to be cured of this disease. Sound familiar? Exactly, because it describes my situation.
I won’t be able to be cured from this disease, at least not medically speaking, yet. But my life can be full and happy and hopefully as much as possible, free of symptoms, side effects and other things that could restrict my life.
Back on track with the appointment though.
The doctor also talked about another drug called cabozantinib or Cometriq. In the basic understanding of the drug, it does the same as the first one, yet when you look at the patients on it compared to vandetanib, patients seem to live a lot longer, making it a more desirable drug (not that there is ever a desirable drug).
He was able to clarify a few questions I had regarding which is better, should you take both at some point and the same.
Earlier I said that ‘most of the appointment went well’. The reason I say so, I asked the question (which I have asked my doctors before, but never got quite that direct of an answer to),
If I decided to go on these medications, it would be recommended to have finished our family planing, correct?
He just looked at me for a very long time and said nothing. I chuckled and said something to the extend ‘or not have kids at all’ (kinda more as a joke). He nodded and was quiet for a bit longer and then began to explain.
Like I have said I have had other doctors put questions out there regarding having kids and maybe if I really wanted them to have them quickly so I can start meds and such. Never have I ever had a doctor be so blunt with me though. I have to say I really appreciate his bluntness, but it doesn’t mean it doesn’t sting.
His standpoint was that I shouldn’t have children. Not because it’s maybe medically not possible, or because I need to start medications, but because it may be irresponsible to set a child into the world, only to have it loose his/her mother early in life.
He was bringing in a bit more of an ethical perspective. Which is one I have struggled with so much in the past.
Is it fair to have a child when I don’t know what this disease process is going to look like? Is it fair to Jeff to potentially leave him with small child? Is it unfair to NOT leave something of me behind for my family?
I shed a few tears in his office yet, but tried to put on a brave face when we left. I just wasn’t ready to talk about these things yet.
When we got back to my aunts house, Jeff and I briefly talked, but this is such a huge conversation to have that I don’t think we will be having it for a while. At least not until things die down a little more in our life (it’s quite crazy busy right now, I mean I am not even home yet right now).
But there are also a few more answers we need to gather, prayers we need to pray and trust we need to shift back to God, before we are ready to make a decision.
I mean it’s a topic that has come up more than a few times over the last few years. We have discussed options, wishes and desires. We have made decisions and then rethought those decisions and had to consider new information that was brought to us. But in some ways I think we are learning all over again to give it all to the Lord, and sometimes that is very hard.
Back to my update though. Monday after that, we made our way back to Bonn for what was supposed to be my Scan day. When we got there though, there was a lot of confusion as to why I was there, what was being done, how I had paid (we had to pay out of pocket for the whole scan) and if I paid enough. After 20 minutes of shuffling papers and another 20 minutes waiting in the waiting room, we were ushered into an examination room. A (I assume) resident came to take my information and do an intake interview and her first question was ‘why are you here?’
I explained again ‘I have medullary thyroid cancer, I need the gallium 68 Scan which is booked for today’. She just looked at me puzzled and told me that I was booked into the thyroid clinic for that day and not for the scan. She asked if I wanted to get some blood work and ultrasound done, to which I said sure to at first but then also asked her about costs and that I want to be conscientious about costs, since it’s all out of pocket.
She left and came back with the head of nuklear medicine who also asked a few questions and then booked me in for the next day for my scan.
As we were leaving, I called the people I had dealt with the whole time to set up my appointment to discuss with them what had happened and about not being charged twice, because I hadn’t asked for the appointment I just walked out of.
They were a bit furious but assured me that it shouldn’t have happened and wouldn’t happen again.
The next day we went back again and I finally got my scan.
The medical system in Germany is a bit different than it is in Canada. A lot of jobs that would be held by nurses here, are their own job, with their own ‘Ausbildung’ (apprenticeship school/training), including the technician who put an IV in and then later also administered the contrast.
After sitting outside for an hour, I was brought back into the room to have my scan done. Privacy is slightly different there too 😂
Here in Canada I am asked to change into a gown in a cubicle with a curtain that can be drawn. There I was given a chair to place my clothes on top. The chair was positioned right in the view of the door, so anyone walking by, could have seen everything. 😂
After about 30 minutes in the tube, scan was done. So it was off back to the hallway waiting area (since I was now ‘glowing’ (slightly radioactive) I wasn’t allowed in the regular waiting room).
This is one thing that was different to my Canada scans and I’m not sure if it is standard or if it just was because I paid for the scan out of pocket. But I got a meeting with the head of nuclear medicine again, about 30 minutes after the scan, to discuss the results.
He gave me a verbal report, that made it sound like there were quite a few very small Tumors all around my neck and my sternum. All very small but definitely visible. They had also mentioned another treatment option in our pre scan consultation.
With any other thyroid cancer, patients can take something called radioactive iodine. This works because most other cancers originate in cell that take up iodine. By making the iodine radioactive, it destroys the cells once it’s taken up, therefore effectively killing the cancer.
That treatment is not an option for me since my cancer does not originate in those cells. There is a treatment that works very similar though called lutetium. It’s also given and radioactive and is hoped to kill cancer cells. However there are quite strict criteria that I would have to meet on a scan to be a candidate for this treatment, which I now know, is definitely NOT an option.
It’s always good to know what you also can NOT to. Definitely saves me from potential side effects and such. I have often say, if I knew back then what I know now about how radiation was going to effect my body and how little it was actually going to help, I wouldn’t have done it. But back then we made the best decision with the information that we had, so no regrets in that regard.
There was a little bit of craziness when it came to actually getting the written results for the scan. Not sure if it was the post office or the actual clinic, but somewhere the letters must have gone missing and the Friday before I left (I left on Sunday) we were frantically looking for someone who can receive a fax since we were hoping it would still come in the mail.
Germany brought out a new law regarding Datenschutz (protection of personal information). I mean in theory it may be a good idea. But oh boy is it annoying!!! 🙄😅
Nothing can me said or sent, even of your own information, unless you have signed a million papers, and everything has to go through mail or fax, nothing can go through email anymore. It just makes it a lot harder to get information shared, especially when coming from out of country.
Anyway, we finally managed and once I actually read the report I was a bit surprised. The many, many small Tumors, were actually more like 2 Tumors each 7mm in size. With some diffuse uptake of the contrast in other areas, but really only 2 truly noticeable hot spots.
I’m not sure if I just misunderstood the physician or if he wasn’t clear on all of the information he gave me, but it was amazing news.
Now I can have a real conversation with my surgeons about possible excision of those spots and potentially giving me even longer before needing to start medications. Praise the Lord.
I will be going to an appointment with one of the surgeons at the end of June. I will bring all of the newly gathered information and make sure we can come to a decision on a plan that we can all live with 😊.
That’s was only half of my appointment. The other half were all with the same person. A very knowledgeable man who I would describe as a mixture between an osteopath, chiropractor, physiotherapist and massage therapist in a town know for offering many medical therapies and kinda a ‘health resort’, called Bad Ems. It’s a beautiful town.
He worked about 3 hours (1 hour each) on my neck to help the muscle to loosen up again, allow for proper blood flow and lymph drainage.
When I first heard about him, I have to admit I was a bit skeptical, but within the first 20 minutes I was convinced otherwise. I have been able to have this much movement all around my neck in a very long time. I honestly don’t even remember when the last time was.
It even helped a bit with my swallowing. I am hoping that the next gastroscope that I have, which is also scheduled for the end of June, will finally stick and last a bit longer than the previous ones have.
That basically concludes the medical side of my Europe stay. We also had some great times with my family, went into the Finnish saunas they have (something I definitely miss having in Canada), had a lot of laughs together, enjoyed good food (maybe a bit too much, the scales aren’t to happy 🙈) and caught up with friends.
It’s really marvellous sometimes how even after years of not seeing each other and often very little conversation in that time, my friends and I can just come back together and pick up where we left off. You guys are truly ‘Amigos para siempre’. 😘
Jeff left Germany 5 days before me to go back to Canada since he had some obligations back home and I still had an appointment to keep in Toronto. I still spend some quality time with family and then got on my way on Sunday, May 26.
After almost another 24 hour travel day, I made it to Toronto where Annika picked me up from the airport.
Tuesday we headed into Toronto, back to Princess Margaret Hospital, the hospital and doctor I had seen 2 years ago.
This time I wanted to make sure I have all of my ducks in a row, get all the possible answers and opinions, so we can make the best possible decisions regarding my health.
It again was a very helpful and informative conversation with prayers answered that I hadn’t dared to pray in a long time.
We talked about medications and what is available in Canada now. She mentioned that cometriq is not available yet and may not ever be available in Canada. However another drug call LOXO, which I had read a lot about on my meddie support group on Facebook, will most likely open up trials in Vancouver soon. 🙌🙌
This drug from everything that patients have been reporting, really seems to almost be a cure. It has shrunk Tumors by 97% in some cases with blood cancer markers dropping like they have never dropped before.
Dr. K and I agreed that now is not the time for me to start on medication, but it’s always good to have options like that open to me. Dr. K calls it ‘the art to start’ and says it’s a very fine balance to figure out when a person needs to start medications. With me though she thinks I am not there yet. Not even close. Which also is such a relieve to hear and to be reassured that I am on the right track and not completely out to lunch with wanting to wait on that.
She also offered me to put me in a study which would allow me to have my Tumors genetically tested finally. I got the blood genetic testing done just over a year after my diagnosis. There is another genetic test though that can be done on the actual Tumors which would look for RET mutations. It just means a specific gene has that mutation which may sounds scary, but would I actually be ideal for me if I had a mutation since drugs like LOXO and Cometriq often only work on specific mutations.
I have asked about getting this testing done in the past, but was told that it would cost me around $6000 out of my own pocket because there aren’t currently any medications allowed in Canada that I would only be able to take if I had the mutation. But with things like LOXO and such coming it becomes very important to have those kinds of tests done.
This was such an amazing answer to prayer that she could get me into this study which also then means that I get the testing done, without having to pay for it. How god provides!!
After 22 days away from home, 8 days away from Jeff, 7 medical appointments and 7 flights, many visits and laughs, lots of catching up … I am finally back home!!
So grateful to God for everything He has done in the last few months especially, for me!!
