Oh crap

The new nodule is malignant and it needs to come out. That means I will have my third operation in less than a year. Appointment with the Endocrinologist next week and with the surgeon the following. When I made the appointment with the surgeon, I told the nurse that I was a frequent customer and do I have to wait until after the late Jan appointment for my surgery to be scheduled? She kind of giggled then said that she would hold a spot for me. When the Endo called with my results, I wasn't shocked though I was bummed. But it really hit me when I had to leave a message for the surgeon & the outgoing message was "you have reached the Helen Diller Cancer Center..." Before surgery #1, when I met my surgeon, I remember being shocked that she was based in the Cancer part of the hospital. Which goes to show how deep in denial I was about what was going on. Anyway, I left a message requesting an appointment & then went to the bathroom at work, waited until it sounded like I was alone then let myself cry. When I had enough of that (by the way, I don't cry very often) I grabbed a bunch of tissue & went outside to call Paul, eyes downcast so nobody could see how red my eyes were. By the time I got outside on a perfect San Francisco Summer in January day - 70 degrees, not a cloud in the sky, I was feeling better. I tell him what Dr Woeber told me "it is malignant and it needs to come out so I sent a referral to Endocrine surgery but don't worry, it's tiny" then he asked how I felt and I completely lost it and cried again. It was mostly out of feeling sorry for myself. I am less than one year into a job that I love and will have to take even more time off for a third operation. I know things could be worse & I have it really great compared to so many others but in that moment when he asked, I indulged in that feeling sorry for myself. So he told me that he would meet me at home in an hour and take me to lunch. So I stopped crying and I said that I couldn't because I had meetings and he said so do I but I will cancel mine, you can cancel yours. Will you do that for me? So I did, and he took me to a great new restaurant I had been wanting to try and had a chocolate milkshake! Then he said let's go to the beach so we went home, grabbed the dog and went to Limentour Beach on the perfect most beautiful day. It was absolutely wonderful. And believe it or not, I fell asleep happy.

Lymph Nodes, Ultrasound and monitoring

It's been a while, things have been going well. The scar is visible but disappearing, I've been running faster than ever, riding my bike, doing strength work and I started swimming too. I have been really good about working out except when I get sick which has been more frequent than normal. Cold, flu, strep throat, you name it. If it goes around, I seem to get it. I still get out of breath faster than I should and last weekend when I ran, I hurt my hip. And this is when you start hearing the violins - I had strep throat over Thanksgiving and lymph nodes swell when you get strep throat. But it has been 5 weeks and the nodes are still swollen so I spoke with my Endocrinologist and he had me get an ultrasound because the swelling is on the same side that the cancer nodules were on. The Ultrasound was yesterday morning and on the drive home from the appointment my Endocrinologist called to let me know that he wants me to have a biopsy because the ultrasound revealed a nodule that needs to be checked out. It is suspicious for metastatic disease, it has micro-calcifications, it is 1.0 x 0.6 x 0.6 cm and it is new since the ultrasound that I did in September (4 months away). Until the biopsy results come in, I shouldn't worry but that is hard. If it is a recurrence, then how can Thyroid cancer be a slow moving/slow growing thing? Does that mean I would need to have another operation, my third within the year? Should I have RAI now and if not, why not, I think I might need it. Anyway, I will stop for now and let's see what the biopsy shows.

No RAI!

The Tumor board met and recommended that I not do RAI. I didn't ask for their rationale, I trust the expertise of the medical team and I am so ready to move forward and get this behind me that I happily take their recommendation. Yay!

The Tumor Board

I've had follow up appointments with both the surgeon and the Endocrinologist. My incision is healing well and they decided to present my case to the tumor board to figure out whether or not I should do the Radioactive Iodine treatment. The surgeon thinks I might be a good candidate for it but the Endocrinologist thinks that it may not be necessary at this time so they want to get together with a cross functional team of doctors (Endocrinologist, Surgeon, Pathology, etc) to review my case. I like that they are doing this and I will follow whatever recommendation they come back with. Outside of that, things are going well. The higher dose of thyroid medicine seems to be about right because I feel fine. I went for a run today for the first time in quite some time. It was hard and I can feel my extra weight pounding on my bones but in time, I hope that extra weight finally goes away and the running gets easier because it was not easy. My basic run has been 6 miles for so long that it was interesting and humbling to have a hard time making it around the track one time (about 1/4 of a mile). I walked and ran and walked and ran then did a few shorter sprints. I took it easy and didn't do too much. I really hope that my body starts reacting to exercise and diet as it should. It hasn't been functioning normally for a few years so now I really expect things to improve with hard work which I am committed to doing. We shall see.

No Laryngeal Nerve Damage from my last surgery!

I arrived at the hospital at 7am and I was brought to my room to get started. First, change into the gown, then the no-slip socks and then get into the bed and answer questions like: when did you last eat? What was the last thing you drank? Are you in any pain, etc. Then the anesthesia Doctor came in and I told her that I was nauseous in the car when I went home the last time so she told me about the anti-nausea stuff they were going to put in my anesthesia cocktail and she gave me a patch to put behind the ear to help address longer term nausea. The surgical resident and an intern came by to introduce themselves and the nurse who would be with me in surgery came by to do a few thing (get few more signatures, etc.) I put on the blue shower cap thing, said bye to Paul and they started to roll me down the hallway to the operating room. The next thing I knew I was in the Operating room and then I do not remember much after seeing those big surgical lights and all of those people standing around. Some were putting sticky things on my skin so they can monitor important things like heartbeat and who knows what else. For this surgery, one of the most important monitoring tools is a specialized breathing tube that has sensors that monitors the my Laryngeal nerve. The machine makes all kinds of noises it if recognizes a change in the nerve function. I was in the operating room for 3 hours and when I woke up, my neck was cramping so they gave me something to make it stop. I sort of remember waking up from surgery and asking if my voice was normal and I think I asked a few different people. Thank goodness there was no damage at all to the nerve on this side! For this second surgery, my incision was stitched and taped rather than glued shut. I had the recovery room to myself and the nurse lowered the shades so it was dark and cozy. I had cantaloupe, honeydew and pineapple for lunch. Paul spent some time with me after surgery but he left for a few hours so that I could get some sleep. And I did sleep but a few times I woke up because I was super nauseous and I did actually get sick in the bathroom. It was pretty terrible. Despite my nausea, I still wanted to go home that day but I couldn't leave until they tested my calcium levels. They were a little low so I was given a prescription for Tums. Which is pretty inexpensive so it's good to know that is a good way to get calcium. By 8:15PM we left the hospital and headed home sweet home. We were against the clock trying to make it to the pharmacy before they closed at 9pm but traffic was no problem and we made it to the pharmacy at 8:45. When we got home, I started to walk up the stairs to our house and as soon as I got to the top of the stairs, I turned around because I knew I couldn't make it to the bathroom in time to get sick again. I threw up 4 more times outside of the house. It was dark and I really hope the neighbors did not hear or see me. I am so relived that my voice is normal. I feel more tenderness compared to the last surgery but maybe I didn't pay attention to the pain because I was so concerned about my voice. So now I am at home and my dog is by my side and my parents are here too. I meet with the Endocrinologist next week. I want to know if he agrees with the surgeon that I should do the Radioactive Iodine treatment. If he says yes, I will find out how soon I can get that done.

Tomorrow - Surgery #2

In 12 hours I will be in surgery to remove the rest of my thyroid. I feel a mixture of anxiety and also excitement. Not that I am super excited to have surgery but I am super excited that this phase is almost behind me. I have a feeling that my laryngeal nerve will make it through unscathed this time around but if it is damaged, I know that it will get better. I wish I could figure out a way to load my voice recordings to make this a complete record of this experience but I don't know how to do it. My surgeon told me that I am a good candidate for the RAI/Radioactive Iodine treatment so when I see my Endocrinologist next week, I will find out what he thinks. If he says that I should do it, I want to get it done as soon as possible. My surgeon also told me that UCSF tests Papillary Thyroid Carcinoma for the BRAF V600E Mutation and I tested positive for this. She said that they have been testing people with this kind of cancer for that gene and that the majority of people (approximately 80%) test positive for the gene and that they are trying to figure out what this means and how they can act on this information. Another thing she said was that in Japan, they are doing a study with people who have this kind of cancer and rather than operating, they are just watching the patients to see what happens. She said that the medical community is very interested in seeing what they learn. One final piece of information that I found very interesting is a Q&A about Thyroid Cancer in the New York Times from an Endocrinologist from Sloan Kettering. For some reason, I can't insert a link to the Q&A but I recommend googling: Ask an Expert About Thyroid Cancer with Dr. R. Michael Tuttle, an endocrinologist at Memorial Sloan-Kettering Cancer Center. It was published in October 2010. OK, it's time for a bath and then off to sleep. Or to try to sleep.

Surgery #2 is on the calendar

I have a date for my next surgery and it is in about 2 1/2 weeks which is great because that means that I can get this over & done. And I know that if I have damage to my laryngeal nerve, it will get better and my voice will get back to normal like it is now. I have a pre-operative phone consultation with the nurse next week and a pre-operative in-person appointment with the surgeon also next week and then it is off to surgery from there. I already have a post-op appointment with the surgeon and I have requested an appointment with my Endocrinologist after the surgery so we can see how much we will need to bump up my thyroid medicine dosage. And I placed an order for a new beautiful scarf as a treat for surgery #2. I should also mention how great my husband has been through all of this. He has been really strong and kind and gentle and thoughtful. I could describe him that way on a normal day but through this, he has been exceptional - I feel loved and that I am really cared for. And if that isn't wonderful enough, after the first surgery he went out and bought me two beautiful Burberry scarves which are in the picture here. He did not even know at the time that I would be needing a second surgery - he just wanted me to have one for a warm day and another for a cool day. I will definitely be using them both a lot in the upcoming months. Lucky that I work in San Francisco because July is usually quite windy and cool so it won't be weird to be walking around with a scarf in the summer in this town. I'll post again in a few weeks after the next surgery.