Kelly & Brian

Eight weeks to catch up on – time really is slipping away. Part of the last 8 weeks seemed to last an eternity (I think we can all guess what part that was) and other weeks have literally felt like only a day has passed. April 14th I started my RAI treatment in hopes to kill any remaining thyroid cells, as well as any remaining cancer that might be in those cells. In all honesty, I was pretty damn nervous about swallowing a pill of radio-active iodine. I don’t know, I guess it just didn’t sit well with me that I was swallowing a pill that is essentially posion. But I did it. I walked into the hospital, swallowed a pill that could not even be touched without wearing heavy duty gloves and then they took readings of my body with a geiger counter. I sat in a little chair in a freezing room for an hour to make sure I kept the pill down. Then they slapped a bright orange wristband on me that read “Radioactive Material” in big letters and sent me home.  The wristband sits on my office desk, along with the dozen or so others from my various surgeries and procedures. Every once in a while I glance over at the bright orange one and laugh a little. I have now been able to find the  humor that for a short time I was once considered hazardous material.

As soon as I returned home I entered isolation in my bedroom. The girls stayed in a hotel for the next five days with my mom and Brian alternating staying with  them. After they returned home, I still stayed in my room for another week. And for a month after treatment I stayed well away from the girls – not preparing meals, not sitting in the same room as them. My mom took Maddie back to her house after I left the confines of my room and with Katelin in school, it was not that difficult to keep my distance. Isolation was difficult but thankfully I have a large master suite witha very large balcony off of it. Brian set up my office in my room so once I was past the horrible side effects I was able to get some work done. And after a week, my mom and Brian were able to visit with me periodically. Regardless, two weeks in one room can be a bit maddening.

I was not quite sure what to expect from the RAI treatment. The doctor in Nuclear Medicine ran down the list of side effects with me and I pretty much ended up experiencing every one of them. I am not going to sugar coat it, the first 72 hours of the RAI treatment was absolutely horrendous. Even more so since I went through it in isolation. I am not going to go into the specific side effects, but add to it the solitude and mental status of being treated like a leper, and it was the most difficult 72 hours of my life. But again, I did it! I do have some residual side effects still, the most odd one being my lose of the ability to taste. That started about two weeks after the treatment and I started to get some sense of taste back a week ago. I am also having pain in my limbs on a pretty continual basis. It can get quite excruciating and keeps me awake at night which is difficult in itself because my body is so fatigued. I still remain positive because I know this is all temporary and am working with my doctors to help lessen the side effects.

I have spent quite a bit of my time back at the hospital though in the past couple of weeks. Of course, as my luck would have it, my thyroid is gone and I still cannot swallow. While we would not have found the cancer without the problem swallowing, in the end, it was not what was causing it.  I absolutely love it though when I call the hospital to schedule an appointment, give them my name, social, etc. and they always ask, “Have you been seen in outpatient radiology before?” Seriously…have I been seen it outpatient radiology before? You would think as many times as I have been there, when I call they can pull up my patient history and see a picture of the tent I almost set up because we were practically living there. Or the fact that I might to have relinquish custody of my first born child to settle the massive hospital bill I have run up there. Regardless, I had more tests and it seems that the difficultly swallowing is reflux so they put me on new medications and if it doesn’t get better in the next couple of months I get to joyously visit outpatient radiology again.

I also went and had a body scan after the completion of the RAI treatment. The scan showed that the cancer did not spread beyond the thyroid region which is wonderful news. It also showed that the radio-active iodine did target the remaining thyroid cells and should be doing their job. My doctor told me to enjoy life and come back in 6 months for another body scan. I will have to ingest more radio-active iodine but at a much smaller dosage not requiring any sort of isolation. At that point in time they will be able to tell me if I am cancer free or not. If not, then we discuss more treatment options.

So that’s what we are trying to do – live life as normally as possible. That’s not to say cancer is still not an every day for us. I would be lying if I said it did not stick in the back of my mind and I am sure it is the same for Brian. For me, looking in the mirror is a constant reminder combined with the residual side effects. But laughter has returned to the house and there are more and more moments every day that we seemingly forget, for at least that brief moment, that I am sick. The girls are still a bit wary of everything but they are starting to get back into a rountine. Maddie still asks everytime I go to the doctor (which is quite a bit) if I am having surgery on my cancer. And if I so much as have a headache, Katelin gets very concerned and starts making Get Well Soon cards. But we are open with them and reassure them that Mommy is getting stronger every day. I do worry though about the anxiety this has caused them and hope it is not something they will continue to caring with them in their little hearts. My wish is that someday in the near future, this difficult time that we have been through will seem like it is part of the distant past.

Edit: I wrote this entry on April 5th but it obviously did not publish then.

There are times in your life when everything changes, a shift so profound it is hard to put into words. You recall that you indeed had a life before that moment but you do not recall how you existed without it…prior to it. It seems as if it has always been a part of you. And in that moment you know that nothing will ever be the same again. Priorities change, values change…you change. 

You get married…shift.

You have children…shift. 

Two months ago today I was diagnosed with cancer. It pains me to put my cancer into that life changing shift. The same shift I joyously use to describe the three most profound moments in my life – my marriage to Brian and the births of Katelin and Madeline.  But still it is a shift – there is no joy, only pain and fear in that split second when you hear the words. It alters you in such a way that honestly I do not even think I can try to put it into words. I could never truly relay the way that it has changed me.   As much as I long for my life prior to cancer I know that I am not the same person I was two months ago. And that is my silver lining. The knowledge that I am a better person today than I was before.  My appreciation for each day, for what is truly important – it was all forever changed when my doctor spoke those words. And it continues to evolve with each step of this journey.

I have been trying to deal with the emotional side of it all lately. You spend so much time dealing with the surgeries and the medical aspect – what the tests say, what the doctors are telling you – that you wrap yourself in that to avoid the inevitability of facing it head on. I have broken down quite a bit this month. Because even though I am hopeful that this next treatment will be the end of my cancer journey, dealing with the knowledge that cancer resides in you is difficult to grasp. And the what ifs become worse than the actual cancer itself.  I try to keep the what ifs at bay and concentrate on what we know today. One day at a time, one step at a time but sometimes it does get the best of me and that is okay. It would be unrealistic for me to expect myself to by Miss Sunshine and embrace my cancer, when in reality I want to pummel it. But you know me, if I am going to pummel something I am going to do it with grace and poise (and probably offer it a baked goody when I am through)!

This will probably be a fairly short post since I am exhausted but I know it has been a while since I have said anything at all! We received the final pathology from the doctors and were quite pleased to learn that all eight of the lymph nodes removed showed no signs of cancer. Besides the main tumor in the right thyroid lobe they found two more smaller tumors – one on each lobe of the thyroid. That is irrelevant now since my entire thyroid is removed. But it did give more insight into how my cancer was spreading and how to treat it.

I went off the Cytomel medication on Friday – the medication that is regulating my body now that I do not have a thyroid- and started the low iodine diet on Monday. This is all in preparation for the Radioactive Iodine Ablation I will start on April 13th. I will go for lab work the Thursday before the ablation starts to confirm my TSH are above 35 and we can proceed with treatment. I am back to hitting a brick wall since I am in what is commonly known as hypo hell. And to think this is just the beginning of it. To be fair, my doctors did warn me that this will be an extremely difficult month to get through. On April 13th, I will go into isolation in my room. The girls will go to a hotel for at least 5 days. They can then be back in the house with me but I have to stay in my room away from them for a while longer. Then I will have the body scan to determine what thyroid cells might be left and if the cancer has spread anywhere. I am not sure of the particulars of it all but I am learning as I go!

Brian and I enjoyed a nice trip away this past weekend. We checked into the Ritz Carlton Laguna Niguel and barely left the property. We ended up staying club level and I was thankful I did not have to be on the low iodine diet with all the food courses they were serving. When they state continuous food and beverage service in the club level description, they are not kidding! I did sneak away to have brunch with some of my oldest and dearest friends. I cannot tell you how wonderful it was to see them all in one place and I truly enjoyed their company.  I will post some pictures in the next day or so.

So here’s to continuing the battle and being thankful that I have been blessed with such wonderful friends and family through it all!

I had originally intended to update my site more often since my last surgery, a little over a month ago. I thought that perhaps my experience through this would someday help someone else with thyroid cancer if they happened to stumble upon it. Obviously, that has not been the case. The last month has been an exceptional challenge, to put it nicely. The first few days after my second surgery were a nightmare. My doctors prepared me for the actual surgery – what to expect during – but no one prepared me for how my body would react without a thyroid. The day after my last post I hit a brick wall. I was exhausted, sleeping 16 hours plus a day, and cold. Bone chilling, excruciating cold – a cold I have never felt before. I was buried in piles of blankets sweating but freezing from within causing painful aches. For the next few days until my medications kicked in I was fully aware that life was going on around me but unable to be a part of it.

Exactly one week after surgery I stopped holding down all foods and liquids. This meant that my thyroid medication was not getting into my system and I started to spiral downward again.  And yes, being that ill after just having 2 surgeries on your neck, truly is agonizing.  Brian ended up taking me to the emergency room where they hooked me up to IVs to rehydrate me and gave me a cocktail of anti-nausea medications. The problem at that point was finding a good spot to put the IV. After two surgeries and numerous blood draws my hands and arms were completely black and blue. The ER nurse just kept shaking her head and asking what had they done to me during my hospital stays! But eventually I did receive the fluids – even if it meant moving the IV line a couple of times. They also sent me home with anti nausea pills which the usually give patients going through chemo. Believe me those came in handy one week later when my sister and I came down with food poisoning after eating at PF Changs!

So I have had my up days and my down days. It is frustrating to feel so well one day and think that perhaps you are finally coming out of the worst of it, to not being able to get out of bed the next day. I still have not yet come to terms with the fact that I have cancer. It is there, present in everything I do and looking in the mirror is even more of a reminder. But I have not yet fully allowed myself to grasp the full extent of it. It is almost like it is happening to someone else because when I do really try to think of it and digest it all, it just seems surreal still. It is like I am outside looking in on it instead of being in my own body. And yet I feel like there is a ticking time bomb just waiting to burst. As if at any moment it is going to hit me all at once. I know there will come the day when I do break and the weight of what I have been dealing with will come down on me. I am just hoping it comes once I am on the other side of the cancer journey.

The funny thing for me is how many people say what I positive outlook I have. Perhaps I just do not understand, but really what other type of outlook am I supposed to have? I suppose I do have this grand excuse now to curl up in a ball and stay in bed everyday but what would that accomplish? The reality of the situation is that the last month has been dreadful.  And there are times I do wish I could have slept through the last month and continue to sleep through this and wake up magically cancer free. But I keep pushing forward because I cannot stop – I am a mom and a wife. My world does not get to stop because I have cancer and I do not want it to. That is when it will have truly gotten the best of me and I resolved from the beginning that is not the way that I want to remember this time in my life.

I want to close the entry with a quote I came across a couple of weeks ago. It has become my mantra of sorts for when I am feeling overwhelmed and unsure of where my path is leading. I hope it speaks to you as much as it has to me.

     “I may not be able to change the circumstances, but I can choose

how to have the experience. I choose to be happy.”

- Annette Matten

Two surgeries down, hopefully no more to go! I came though my surgery yesterday much better than I did with last weeks surgery. I am not sure why I fared better this round – perhaps because I already knew what to expect or perhaps my anesthesiologist mixed a better cocktail for me. Last week I became very ill from the pain medication and that was just plain miserable. This time around they knew to give me anti-nausea medication prior to anything else. It made quite a difference.  I was also quite at ease going into the surgery – all smiles, though I am sure my mom and husband could read the slight bit of anxiety in my eyes. Last week there was the huge unknown of whether or not it was cancer and how the recovery process would be. I am the type of person that cannot stand the unknown – it eats away at me. But now that we know it is cancer and we are on a treatment plan, I feel more in control of the situation. It is comforting to feel in control of something when you are dealing with such an uncontrollable force as cancer.

The surgeon removed the left side of my thyroid so I am now without any thyroid gland. He also took a few lymph nodes from the right side of my neck where the cancer was removed last week. From the sounds of it, the lymph nodes looked pretty good but were removed as a precautionary measure. They were sent to pathology for biopsy to see if the cancer has reached the lymph nodes and we should have the results soon.   Taking them out now also decreases the chances of  a third surgery. The calcium levels in my blood after surgery were in normal range so that was my ticket to freedom from the hospital! It is much easier to recover at home than in the hospital since it is impossible to sleep there. The nurses are in and out all through the night checking vitals, changing IVs, taking blood, and giving pain medication. I came right home and slept the afternoon away. Thank goodness for pain pills!

Where do we go from here? I will be seeing an endocrinologist next week to continue my treatment plan. Of course I need to be on thyroid medication for the rest of my life given that I am now without one. I am told that will be the tricky part of all of this – find the right medications at the right doses to properly regulate my body. It is amazing how much the thyroid gland regulates in your body and the effects it can have if not properly regulated.  I have been warned of the side effects – fatigue, weight gain (more weight gain…), depression, so on and so forth – until my medications have been sorted out. 

I will also being having a body scan to see if the cancer has spread and if there is any thyroid tissue left. The surgeon has told me that while they do remove both lobes of the thyroid it is impossible to get it all out. Thyroid cancer is not treated by an oncologist with radiation or chemotherapy. It is treated by the endocrinologist with radio-iodine treatments which kills any remaining cancer. I will be given the radio-iodine and then have to be isolated from other people for 5 or so days. I am not quite sure if it will be out patient or inpatient. I do not know how it works when you have children. It seems almost impossible to be in the home environment but yet keep your children six feet away at all times. I am sure these details will all be sorted out soon enough. Anyhow, I will go through the scan and radio-iodine treatment as many times as needed until I have a clean scan. Once I have a clean scan it becomes an annual event to have a scan to makes sure the cancer has not returned. 

I was flipping through my magazine last night at the hospital and came across an ad for thyroid cancer and the “check the neck” campaign. I did not realize that thyroid cancer is one of the fastest growing cancers in the nation. My cancer was found by a fluke. I started having problems swallowing in January 2008 but attributed it to allergies from moving from Seattle to Scottsdale. I finally made an appointment and saw an ear, nose and throat doctor during the summer and had a barium swallow test done which showed I had reflux. He told me my difficultly swallowing was caused by lesions in my throat from the ongoing reflux. They would heal after I took the reflux medication for a bit. Fast forward to November and I went to have a routine physical with my general physician. I mentioned to him that I was still having difficulty swallowing so he doubled my reflux medication. He also took routine blood work. That routine blood work came back with my thyroid levels elevated so he ordered an ultrasound of my thyroid and more inclusive blood work. The ultrasound found the mass which then led to the uptake scan, the biopsy and finally surgery. However, the more inclusive blood work that was done showed that my thyroid levels were fine.  So it was that one day – November 14th – that my thyroid levels just happened to be off that set this into motion. Because in all reality, in absence of the cancer. my thyroid was functioning normal.

There is still some debate over whether or not the mass is the true problem with my swallowing. The surgeon does not feel it is what is causing it but all the other doctors I have seen think otherwise. I guess we will have to wait and see once the swelling goes down whether or not I can swallow! My point in all this is that my mass could not be felt from my neck, it was set back too far. But the majority of thyroid nodules can be seen or felt with a neck examine so I will jump on the “check the neck” campaign and urge everyone to do just that. Statistically, less than 1% of thyroid nodules/masses actually turn out to be cancer. But after being a part of that 1%, I hope it reminds people that this cancer, though fairly rare, does exist. Okay, I am jumping off my soap box and back into bed to rest!

Today has been a day of frustrations. Everything is frustrating me to no end but most of my frustration circles around one underlying thing. Cancer. I am frustrated that I have cancer. I am frustrated and overwhelmed.

I am frustrated by the way people treat my cancer. Whether it be the tech doing my uptake scan, the doctor doing my biopsy or just someone I happen to be discussing with what has been happening, they all say the same thing, “If you have to have cancer, this is the best one to have.” And I one hundred percent agree – if you have to be dealt the cancer card in life, this cancer is, for the most part, treatable and the survival rate is around 99%. I never let that escape my mind because I know that there are people battling much worse cancers and illnesses.  My frustration occurs when some people take it one step further and tell me it is the “easy cancer.” Easy? Trust me, there is nothing “easy” about this cancer.

I am frustrated that I can look my mom in the eye and tell her not to spend her time trying to figure out why this is happening. That there is no reason I have cancer and nothing we could have done to prevent it. Yet I still spend hours each night doing the exact thing I have told her not to do.

I am frustrated when I look in the mirror. My bandages came off and my mom and Brian said, “It looks good!” or “Your surgeon did a great job!” And I repeat in my head like a mantra – it’s not that bad – but in reality all I see is an awful mess. A three and a half inch awful mess across my neck. And in defense of my surgeon, he did do an excellent job. I just don’t see it that way right now because it is too soon for me to have the perspective I need. Pre-op he drew a line on my neck of where the incision would be and he tried to put it in a neck fold or a wrinkle line. But finally he threw his hands up and said, “You have no wrinkles!” Thanks, mom, for the good genes!

I am frustrated that in the course of less than I week I will have had surgery, discovered I have cancer, and will have yet another surgery. It is quite a bit to handle in that short of a time span. I suppose my ultimate frustration lies in having to have this second surgery and my anxiety is getting the best of me. The thought of going through the recovery process, the pain, the unveiling of the new scar, all of it…it is wearing on me.

Okay, really I am not trying to sound like a whiny mess! I just wish it was Tuesday morning so I can get the surgery done and over with. I am looking forward to getting through this phase and the subsequent treatments more than I can express so I can enjoy normal life again!