Frustrations are high
Yes I am still waiting… Waiting for a call from the Cross Cancer Institute. Trying to figure out when I can get an appointment with an oncologist. It is now to the point where I am getting really frustrated.
My last appointment with Dr. S. was on July 5th and in this appointment he told me about the pathology as previously discussed. He also told me, it was the last appointment I would have with him. Especially since he sent a referral to the Cross Cancer. Specifically to Dr. M. (my other surgeon) that same day and I should hear from the Cross in a week or so.
Well, about 1.5 weeks later I went out with an amazing lady who is a breast cancer survivor and now a lifestyle coach. She was great for giving me tips on how to deal with the health care system. In addition, how to get the maximum out of everything: essential oils, juicing, diet and regular treatments. Anyway, I might talk about her and her tips and tricks in another post.
She also told me I needed to start calling the Cross and start getting annoying. That way, they might actually start working on my case faster. My biggest issue right now is that I have so many questions that only an oncologist can answer. Yet, I still haven’t seen one yet.
Making some noise
So, I started calling about 1.5 weeks ago. My first call to the Cross just left me completely flabbergasted and almost mad. Turns out no one had actually put in a referral for me. The Cross didn’t even know they needed to see me any time soon. They didn’t even know I have cancer. When I hung up the phone, I immediately called Dr. S.’s office to see what happened.
After about 5 calls to different extensions I figured out that the ENTIRE office is on holidays. Dr. S. himself is on vacation until August 8. At this point I just couldn’t understand anymore why this was happening. First it got missed to sent a referral for me, now there wasn’t even a single person I could call and ask about this. All the doctors and the secretaries are all gone. I couldn’t even reach anyone at the reception desk.
So, here I was now. Obviously I didn’t wanna wait until August 8. Waiting for them all to come back, then send a referral. Then having to wait another few weeks before I got an appointment. My only other option was to call my family physician. I called Dr. M-S. office and asked them to have her give a call back as soon as she could. That call didn’t come until the next day sometime. When I explained the situation to her she agreed that she would fill out a referral and sent it out.
Call, call and Call again
Last Monday July 18, 2016 I called the Cross again wanting to check in and make sure that this time they actually got a referral. I wanted to make sure I was now officially on the list and wasn’t waiting for nothing again. When I asked when I could expect to hear from them, the lady on the phone explained to me that it usually takes them 5-10 business days to triage patients. Depending on what triage said how urgently they need to see me, I could then wait another 4-6 weeks.
Boom another punch in the gut. I was starting to feel like no one really cares that I have cancer. It was just something they would get to eventually whenever they had a free minute. Here I am waiting, and no one is even trying to help me.
Insurance issues
Another problem I ran into, was my short term disability case was only approved until July 25, 2016 and would be closed then. In my first conversation with them they told me if I wasn’t ready to go back to work at that time I would have to have a doctor fill out their paperwork again and submit again. On that Monday (July 18, 2016) I started calling people to figure out what I should do.
I called my family physicians office. This time I found out that she was on vacation now as well until July 25. Now I didn’t have a single physician who knew my case. No one who could possibly fill out the paperwork for me before the claim expiration day. I called my manager to ask about coming back into an office position. Rather to figure out if that was even an option should short term disability reject my extension if I submitted it late.
Afterwards I called my disability advisor who advised me to call the insurance company themselves. They would be able to tell me what exactly it was they needed me to do. Before I could do that, my insurance agent called me. He wanted to discuss how I was doing and what I needed to do in order to extent my claim. He was one of the nicest insurance people I have dealt with up until now. I told not to worry, he would keep the claim open. All I needed to sent him was a note from a doctor saying that I am unfit to return to work as of right now. You can’t even imagine how much stress that took off me.
Some resolutions, more frustrations
I made an appointment with my family physician for the first day she is back to get that from her. That day is today. I called the Cross again to see if they would have an appointment for me soon. I didn’t think I could keep waiting, because my blood work has not been checked in almost a month. My thyroid hormones have not been checked since my surgery. I have been taking my Synthroid for over a month now, but don’t even know if dose I am taking is the right one for me. So, I called them to see if I should wait to see an oncologist or have my family physician order some blood tests since I am going to see her anyways today.
The lady at the Cross referral desk told me then, made me just about fall out of my chair. She was like “Well, we are waiting for you to have your PET scan done before we can go any further and see when we need to see you”.
Excuse me? You need me to go have a PET scan BEFORE I come see you?
From the very first time I had seen Dr. S. and was given the diagnosis I asked him when we would be doing more testing. Especially testing to see if my cancer had spread anywhere else. He had assured me this would happen once I saw an oncologist. They would then send me to get more tests done. Please don’t get me wrong Dr. S. is an amazing doctor. I am so glad I had him as my surgeon. I just feel like there maybe was a lot of miscommunication. Plus, being diagnosed with cancer right before summer vacations started was probably also not best timing.
Feeling defeated
Anyway after I hung up the phone I was just in tears. I feel so helpless right now. I just feel like no one cares that I want to have an entire life to live ahead of me. No ones cares that I have one of the most aggressive thyroid cancers out there. When I read or watch people talk about medullary thyroid cancer, they always talk about how it isn’t curable. They talk about how I need treatment to improve quality of life and life expectancy. Since we don’t even know if it has spread yet, it makes everything so much more unpredictable. I just sat on my bed and cried and cried.
Jeff went back to work on Sunday so this is my second day where I am all alone at home. Somehow I think it just made things worse. I couldn’t just go to him and tell him everything. Yell a little bit about how upset I was about the whole situation and just have him hold me. All I had was to text him and him to try to have him console me over text.
Maybe some help?
Well, after I calmed down a little, I started working on this post, before leaving for my doctors appointment. When my doctor walked into the room I started with the safest topic for me not to break out into tears. My extended absence from work and the note I would need from her.
That being said, it let right into the discussion of how long she should write me off for. I told her the whole story about what happened that morning and just broke down. I just don’t want to deal with this anymore. All I want are answers. I bombarded her with so many questions. Many of which I had asked Dr. S. as well and he didn’t know the answer. Neither did she. I get that medullary thyroid cancer is such a rare form of thyroid cancer that not a lot of doctors are super familiar with it. Which is one of my biggest reasons I want to see an oncologist who specializes in this field. I just want answers!!
Finally someone to help me
I walked out of her office with a sick note and blood work to get done. She was also going to get the PET scan organized for me. We decided that I wouldn’t go back to work until I had seen an oncologist and knew what the plan was for me going forward. I went to go meet someone for lunch after my appointment and as I was walking up to the restaurant I got a call from the Cross telling me that they had booked my PET scan for Wednesday, August 3. They also went over all the rules I had to follow for the test.
I had to force myself to make sure to listen very carefully. I was so confused and so mad at the same time. It was the same lady on the phone that had told me a few hours earlier that Dr. M-S. was going to have to write a referral for me. So I hope now all the appointments and things I need to finally get to see an oncologist are now booked.
It is a little crazy to me to see the difference between the pediatric health care world and now being a part of the adult health care world. I mean we in the children side of things aren’t doing everything perfect by any means. However, I just feel like if I wasn’t a health care professional and would know what I needed to ask for, what kind of tests I need, who would be following me right now? Especially as I am in between specialties, waiting to see the next specialist. Like I said my thyroid hormone levels could be completely out of whack. It could make my cancer so much worse and not a single person would know.
Thankful for all the prayers
I really try to put this all at God’s feet but its so hard to leave all my worries there. It is so hard to just keep waiting. To not get caught up in being frustrated or even angry at everything going on. If I am on your prayer list, maybe that’s something you can pray for me. For me to be able to let go and let GOD.
Thank you so much for everyone who follows my journey and a special thanks to every one who is praying for both Jeff and I. Thank you for waiting with us for answers.
