Where do I even start?
I have been asking myself that question for a few weeks/months now as I was thinking of how best to give an update about the many things going on at the moment.
Jeff often during conversation will remind me ‘I think you need to write another blog, its like therapy for you’. In many way I think he is probably right. With that said, here is my attempt to make sense of the last 3 months.
My latest update had some hint as to what was going to happen next, but it is definitely a bit more complicated then I had thought at the time. I mentioned my cancer blood work markers were increasing and no one had told me, until I randomly found out about it.
A quote from my last post: “Truly, I know that the days will come when I am confronted with cancer again and more treatments, eventually probably more and more frequently. I am anxiously anticipating those days.”
Well… those days are here. I am faced with having to fight again, to figure out what my next steps are, what the best options are, where to find the best help possible. And I am doing all by myself without the help of my doctors. My family and friends have been a tremendous help and support, but from the medical field, I have basically been left to my own devices.
Which leads me to the title of this post.
Having a medical background, but now also experiencing the medical system first hand as a patient, I have encountered what almost seems like two different worlds. Granted my work is in pediatrics (kids), which often contrasts the adult world drastically, however this experience has absolutely opened my eyes.
As a nurse, especially in the ICU, I think maybe I am spoiled a little bit, by always having the doctors on the unit and available almost anytime I believe something to be off with my patient. Any little change, any little order that I need, usually I can find someone to discuss it within minutes.
I often witness physicians going to bat for their patients and advocating for what they think this patient needs and what is best for them. There are many important conversations taking place, interventions are tried and booked to often try and save lives. Again, working in a peds world those lives are often very young lives who can’t speak for themselves and need someone to step in for them.
Which brings me to the second angle of health care, the adult patient angle. It is so vastly different than what I see at work, but yet it’s not really, nor should it be. Many of the patient in the adult world also can’t speak up for themselves. Or if they can, they often don’t know that they should or what to even ask for. I have said it before and I will say it again, if I didn’t have my medical background and knew what to look for, I would have fallen through the cracks a very long time ago. Which makes me so sad for the patients who don’t have a medical knowledge or someone in their circle who does, the people who solely rely on their doctors to speak up for them and fight.
What if your doctor doesn’t think what your going through is a serious? Because chances are one or more of their patients are in an even worse spot than you are. It doesn’t mean though that your spot is less important.
That however is how I have been feeling over the last several months.
My appointment with my oncologist on February 5, 2019 went well, as far as I could tell. He validated my concerns about the rising numbers and some of the side effects I am starting to have from them. We discussed in length my need to get a gallium scan, but he also informed me that it will probably still take quite a long time until we are able to get it here.
He also mentioned surgery. Another surgery. This time an even bigger surgery. Potentially a sternotomy, which would mean they would open me by cutting my breast bone and exploring my chest cavity for cancer. Since I have one small known tumor in that area.
We had discussed this surgery with my surgeon after my second neck dissection, 2 years ago. At that point we agreed that the tumor was too small to go after and he wouldn’t be able to guarantee he would be able to remove it. I completely agreed with him at that time. My oncologist however thought maybe it was worth revisiting it and seeing if there are other options regarding how to take it out. Since nothing new had shown up on my scan in October there was no other explanation for the increase in numbers. We ended the conversation agreeing he was going to get in contact with the surgeon, as well as book another PET/CT for me in the near future.
That scan happened at the end of February, which left me with 1.5 weeks of wondering what it said. The oncologist was supposed to look at it the following Monday and either call me with the results or make an appointment to see me in clinic. My family doctor was on vacation which meant I couldn’t go there either to get the results faster.
Monday passed and I didn’t receive a phone call. I waited for a letter in the mail with an appointment to come see him. When on Thursday there was still nothing in my mailbox, I decided to call the oncologist to follow up.
There is no direct line for him that I know of, so I always have to go through his secretary. I explained to her the reason for my call and if she could check if he had made an appointment for me, so I could make sure I had the day off.
She informed me, that no he hadn’t booked an appointment for me and he would see me again in October for my next follow up for a PET/CT. To say I was a bit flabbergasted may be an understatement. Having had a rough day emotionally to begin with, I went into a full on spiral. Of course trying to stay calm on the phone and explaining to her that it doesn’t make sense, since he wanted to talk to a surgeon for me and had said he wanted to see me again. She agreed to let him know that I had called.
I hung up the phone and just about went into a full blown panic attack (I have been struggling with those the last few months). Not quite an hour later, I received a phone call from the oncologist.
- I was just going to call you
- scan looks great, better than the last
- I haven’t talked to the surgeon yet, I will send him an email
- lets book you for an octreotide scan,I will call you with an appointment date right away, or I will send it out to you today
- you would like an ultrasound? I don’t think that is necessary
That is basically the gist of my conversation with him. My thoughts on it were and still are very mixed. It doesn’t really make sense to me that the scan looks better, except that it shows just how flawed a PET/CT is to diagnosis and find Medullary Thyroid Cancer. My numbers are rising, so either the tumors that we know of should look more active, or there should be more tumors present. I did an octreotide scan a while ago and it was absolutely useless. It showed nothing and just exposed me to more radioactive tracers and radiation. Which is one of the reasons, I am not very fond of doing another one.
My latest neck ultrasound was done almost 2 years ago, which is in my opinion too long. According to the Medullary Thyroid Cancer guidelines, I really should be having one every year. I am still working on this part though.
This all brings me to the ‘doing everything by myself’ part.
Since that conversation with my oncologist, I decided that I couldn’t just wait around and see what happens and that I needed to be a bit more proactive than I have been in the last little bit. Especially since the conversation was now almost a month ago and I haven’t heard nor received a letter from him for any other appointments.
With that it was research time. I spent hours upon hours trying to figure out a way that I could be getting a gallium scan (if you are asking why I so badly want this one, it is because that particular tracer is so far the best known tracer to show neuroendocrine cancer, which MTC is). I found options in the States that would have to be paid completely out of pocket, but…. they are available. 52 places to be exact. I was always told that its is so rare in North America, that only 1 center on the US east coast currently offers it as a trial and it is very hard to get it to.
Now here I was with many more options. Just to come to find, that there are many options within Canada even. I found a few options all across Canada. Finally settling on Toronto since I could combine that with a short visit to Annika, have some moral support there.
The next question was, do they even accept out-of-province patients? If so, who needs to refer me and how? A few phone calls later and I was booking an appointment with my family doctor to have him send the referral.
All of that is currently in the works. One hospital has already denied me and I am waiting to hear from another one. Based on my phone calls with them, I am hoping to receive an appointment to go there within the next few weeks.
I also found another option for a different scan that I had never heard of. It is called the F18-Dopa scan. At the moment it is in the study phases and the only reason I heard about it is because I took Jeff’s Grandmother to an appointment. The radiologist and myself got talking and he told me about this scan. It is supposed to be very similar to the gallium scan but may not be quiet as accurate for neuroendocrine tumors. The plan now will be to get the gallium and the F-Dopa scan within about a month of each other and compare them. If they are very similar (which it sounds like they might), I will be able to continue getting the F-Dopa here and wouldn’t need to travel. What an answer to prayer!
My blood work was also repeated. Unfortunately my numbers continue to increase. Calcitonin is now up to 1959 (latest 1705) and CEA is over 15 now (the highest it has ever been). It is concerning and giving me quite a bit of anxiety sometimes. However right now I am trying to get all the answers possible and trying to fight this thing more aggressively… again.
