One Year Follow Up

The following is a post written and published on Facing Cancer’s website where I am honoured to be a writer. You can find the original post here.

The ticking of the clock is getting louder as the days pass. This week it will be 10 months since I found out I am in remission from advanced Thyroid Cancer.

I was diagnosed in June of 2009. I sat the doctors office in shock, even though I had already self diagnosed, and knew in my gut it was Cancer. But even though I told myself I was prepared to hear bad news, it was still a devastating blow. It was explained to me that if I had to have cancer, this was a good one since most people are treated and recovered very quickly. What I didn’t know until much later was that My entire thyroid was swallowed up by the disease and that I had lymphatic metastasis. So my journey was much longer than any of us could have expected. I lived in a chronic state of illness for 2.5 years. Until the day I sat in the doctors office, once again expecting bad news. My mom was with me for the first time ever, so I grumbled through obligatory introductions. My doctor looked at my mom and shook her hand politely and said something to the effect of; it’s nice to meet you, but we won’t likely have another opportunity for about a year. I felt immediate panic, thinking she was about to announce she would be taking a leave from her practice, leaving me in the lurch, as my previous doctor had. She asked me to have a seat and then went over the numbers from my recent labs and my whole body scan. I sat there, blinking slowly, trying to understand all the numbers, when my mom, seemingly understanding my confusion, piped up asking what it all meant. “It means we’re finally at a low enough level to consider Coleen to be in remission”. That happened on Jan 3rd 2012 and was the best belated Christmas gift I could have received.

I’m thrilled that I am counting it and remembering every month. I’m not sure that I’ll ever forget how significant the 3rd of each month is. You’d think I would feel more at ease the further I distance myself from that date, but for me it’s quite the opposite. I live with the fear of recurrence in the back of my mind, gnawing at my happiness like a termite. It’s happening one thought at a time, but collectively the thoughts frighten me. The what ifs, and the panic every time a new “symptom” pops up. I can’t be the only one who feels this way, can I? I know it’s not healthy but it’s not a conscious choice I make.

Right now I’m in the countdown to my one year follow up. I have heard variances among fellow thyroid cancer survivors of what one year testing involves. So to be honest, I’m not really sure what to expect. This lack of knowledge adds to my fears. I have just reached out to my doctors to book an appointment to review my last set of blood tests and to discuss what we do now that the one year mark is nearly here. So I guess Until then it is simply a waiting game.

Can you relate?

hiding out of fear

Well I know I’ve been kind of absent from everything, school, family, social media… The fact is I’ve been hiding. Trying to avoid crying or getting angry. For over 2 months now I’ve had some medical issues that when combined are looking like my cancer may have spread. It could be side effects from not having a thyroid and not having my meds regulated still after all this time. But my doctors are concerned, which makes me scared. So I was scheduled to have some very invasive tests done and they begin tomorrow.

I’m not sure why I do this. Just when I need people the most I pull away and hide. I wish I was better at asking for help, I wish I was better at letting people in when things are rough. I’m not good at these things.

Tomorrow I have a bunch of blood drawn so they can start looking at my Thyroglobulin (Tg) again. but the real facts will come after my tests on Monday. It’s not pleasant and I wish I could avoid it but frankly uncomfortable tests last a short time, the discomfort you feel from having cancer is much worse so better to just get it over with. I’ve hated waiting to have the tests done but now at least I’ll have answers.

Again it could be nothing but the feeling I have in my gut is just like the feeling I had in the beginning, right before I was officially diagnosed with cancer.

Sadly as I was looking at the calendar to mark Mondays appointments off I realized something. By the time I am getting the result it will be my 2 year anniversary since the day I was diagnosed. It was June 30th 2009. For some reason once I recognized that date was close last year, I fell into a rough patch of depression. I am scared that I am at the beginning of the same slide right now.

I spent a large part of the day crying today, my crying turned to rage. I know now that I am angry again.

Angry that I have cancer
Angry that not all that long ago I was told there was only a trace amount of cancer showing on my scan.
Angry that it has ruined a lot of parts of my life.
Angry that it nearly destroyed my marriage.
Angry that my treatment is on hold because the drug company fucked up and the drug I need has been on shortage for a very long time.
Angry that my cancer might have spread
Angry that I have to be scared for the rest of my life (even once I am cancer free)
Angry that I have had cancer for almost 2 years when many people with the same cancer are cleared in a much faster time.
Angry that I feel so angry, when I have been blessed with so much in my life.

I am so sick and tired of being scared. I just want my life back. It’s my life!!!!!!!!!!
Is that really so much to ask and pray for?

?

Post Op – Part Deux

On Fri Aug 28th I went in for my second surgery. While I knew that it would be a much more invasive surgery (radical neck disection) I wouldn`t have been able to understand how much harder this surgery would really be compared to the last. The last one wasn`t a walk in the park either but at least I bounced back quickly afterward and got to go home early for lack of compications.

This time was a totally different situation. I arrived at the hospital at 6am to get in and prepared for surgery. They began the surgery at 8am with plans to be finished by 2:30-3:00pm. This time came and went by hours for my family and with mine being the only surgery still in progress the waiting room was empty of families and staff. Finally after a couple of hours at 5:30 a Dr. came to speak to them to let them know that I was still in surgery and that it was taking longer than expected, I`d be another 1.5 hours. Around 7:00 my surgeon came to speak to them. She said the surgery although long was good and that they had to remove alot more cancer than they anticipated. It seems they had 18 lymph nodes marked for possible removal, and wound up taking 81+ lymphnodes along with cancerous soft tissue. She commented that she had gone very low into my upper breast and was still finding cancer. Obviously this means the spreading may be more widespread than we were hoping to find. Just before 7:30 my family was finally able to see me. I was in the ICU to be monitored overnight.

Overnight turned into 4 days due to complications. I wound up having an extreme drop in calcium, this is very dangerous in the levels I was showing and can cause heart attacks even death (who knew? I’ll drink milk now I swear!). This Leads my surgeon to believe she has taken most if not all of my parathyroids during the course of the surgery. They look like lymphnodes and can be mistaken for them. On the second night my breathing failed and I had to have emergency measures to fix my breathing and subsequently my blood oxygen levels. The ICU was the best spot I could have been when that happened, they got to me fast and by morning I was doing well. Though my Magneseum went low as well after the 3rd day it was not as dangerous as the calcium problems.

On day 4 I was stablized enough to move out of the ICU this was GREAT NEWS! Finally after a really rough surgery and slow start to recovery I was released! I am happy to be home. I feel sick alot mostly because of this amount of medications I am on, and I am very very tired . But nothing beats being home with my family. Now I have to recover enough to be able to get through radiation. So far that is the next step, unless she decides to do some sort of scan in between to look at the rest of my body. So I will try to look forward to having a bit of a break (mental and physical) over the next few weeks. I will hug my hubby kids and tell them over and over how I feel about them. Never again will I take one day for granted. I am thankful to have made it this far, and I will continue to visualize crossing the finish line. NOTHING is more important to me than hearing the word “remission”.

Now I wait and recover, next step is radiation… Yuck!

Bad news

This week I had a pretty bad blow with some news from my Dr’s. It seems the cancer has spread. They know it is in my lymphatic system on the right side, but a recent ultrasound shows it may also have moved to the left side. They have once again scheduled me for a rush surgery. The surgery is less than 2 weeks away. Aug 28th. THis week I have a pretty invasive biopsy appt. I will be having a bunch of lymph nodes biopsied so the surgeon can have a better idea of what she’s dealing with. I have some blood work being done to see how my body is handling missing a thyroid, and a CT scan to get better images of everything.

I was also scheduled for radiation on Oct 23rd. With the cancer being in my lymph nodes it’s become manadatory that I do it. I will be in the hospital for 4-6 days (depending on how quickly my body can get rid of the radiation- most people are only 4 days). Once I have been discharged I have to stay anywhere but my own home. The slight bit of leftover radiation in my body poses a risk to my kids, mostly my daughter, Ruari as her organs are still developing and the radiation can cause problems.

It will likely be Mid December before they can do a full body scan to see if it has spread elsewhere.

I really thought this would be much easier and much faster but now I understand why cancer is so horrible…

My heart is breaking for my son because he has had a pretty lousy summer and now I will be in the hospital the last weekend before school and his first few days. I can’t believe I will miss this day. I have always been with him on the first day of school to make a special breakfast and drive him to school.

I really hate this…