The Worry Wart in me will never stop….

So as you can imagine, I have had a hard time getting the whole cancer stuff off my brain as it’s definitely affected my life in a big wayย over the last 8 months. I went for a follow appointment to see my Primary doctor just last week to discuss my anxiety medications (which had to be upped…again…ugh). And the last few weeks I have been discussing my breathing issues with my Hubby – ever since my surgery (in December 2014) I haven’t been able to do a whole lot of physical activity without becoming what started off as heavily winded then turning into wheezing/hyperventilating/unable to breathe. My surgeon said that because the surgery was pretty invasive and extensive, it was going to take a while for the inflammation to go down, so it could be 2 months or it could be 6 months for things to settle down. Just give your body time to rest! Well he doesn’t know me, haha.

As time has gone on, I think I just became more aware of this happening as I wasn’t even able to go up the stairs with a heavy basket of clothes or cleaning my van or vacuum the house without this happening. So after my Hubby brought up the fact that it had been so many months, it was time to say something. With my grandmother, my dad, and my son all having asthma, that was the first conclusion. He gave me a rescue inhaler and told me to keep him in the loop as to how often its being used, as I might end up needing a preventative. He also wanted to eliminate any other sources to the problem so he ordered blood work, a lung capacity test, and a x-ray to be sure that there wasn’t any fluid in my lungs. My blood work came back all normal – they were worried that I may have been anemic or something along these lines. My lung capacity test came back normal for someone that has asthma. They were concerned that because I was known to have lesions in my lungs that I wasn’t able to get a full breath or that the radiation may have caused damage to my lungs when trying to shrink the lesions. Finally the x-ray was done and that came back with no fluid, only showing whatever is going on in my lungs, whether that being scar tissue, or the same lesions, or whatever the case.

With that being said, I felt my heart sink in my chest – in the CAT scan of my chest, they said that the lesions had shrunk so small that it couldn’t be seen or it was now microscopic. So I was really confused why they would now show up on a x-ray which isn’t as detailed as a CAT scan. I called and left a frantic message for my Endo prior to my appointment yesterday and once again…..wait…..

Getting to my appointment yesterday, I had to force myself to eat prior just so I could take my medications and was just exhausted from the anxiety of everything going on in my head. I swore every time they said that I didn’t need to worry about something, I ended up having to deal with that one thing – doesn’t matter what the ratios are. 1 of 10, 2 of 3, or 1 of 100. I’ve heard them all and I’ve been that 1% or 33% each time. Yes, I am a worry wart but I need to know – it’s so much better than NOT knowing. But once I got into the office, I knew I was finally going to get some answers. They took resting heart rate – 118 – yep that’s not good and I couldn’t stop shaking from my anxiety but that’s becoming my new normal. After the pleasant 30 minute wait in the room, my Endo finally came in and the first thing she noticed how tired I looked – yep, sure am, exhausted. She explained that it’s one of the things that I will feel when they have to suppress my Thyroid so much to keep my cancer from spreading, this is what they have to do. We talked about my breathing and what is going on and found out that I might also have asthma but it’s another side effect of a suppressed Thyroid is a rapid heart rate, which causes rapid breathing and the rest follows. I knew the anxiety is caused by all of this but I had no clue it would be this bad – I honestly have been a basket case and have no clue what to do with my self. She also explained that my dizziness and the one time I passed out came from that as well. So all those times that I felt so out of control and “crazy” and hypochondriac – I’m not. This is just my new normal and she basically said she knows it sucks – and maybe after a few years we can pull back on my meds once my cancer gets under control which will help how I’m feeling.

After my doctor finished telling me all of this, she just looked at me and knew I was just done. It’s been a very, very long few months emotionally and mentally more than anything. She said I need to de-stress my life as much as I can. I need to spend time with my kids and family. Enjoy my life and know that we are doing everything we can for my health and there is nothing we can do at this point. We are waiting for my 6 month mark after radiation and then we will know more. And at that point we will make sure we do everything we can and she will send me anywhere in the US to make sure I have the best medical care I need. She will make sure that I am taken care of from the medical side, so she said I need to make sure I take care of me and get my anxiety/stress down. She recommended that I see a counselor (which I’ve already started doing).

Overall, I needed to hear that from my doctor and it’s still going to be VERY hard for me to let things go and to de-stress my life but I have to. For my family’s sake, I need to make sure I am healthy enough to be there for them.

Thanks, Kat

P.S. I want everyone to know the following: I KNOW that I have sooooo much support and love from all of my family and friends. I am writing this blog for other Thyroid Cancer patients, awareness and for myself. I don’t want this to be misconstrued as anything else. Thanks! ๐Ÿ™‚

Much Needed Update (6/17/2015)

Oh goodness….lol I realized the other day that it’s been a while since I’ve updated but it wasn’t until tonight that my Hubby reminded me that I never let everyone know everyone how things went after my follow-up scans. Obviously, there has been a lot to happen in the last 3 months so I will update below! ๐Ÿ™‚

1. Post Therapy Scans (3/10/15)/Follow up with Endocrinologist (3/26/15): 

After meeting with my Endo to discuss the results and hearing back from the Nuclear Medicine Dept., they did determine that I had two very small nodules in both my lungs but it looked like they have already shrunk enough to not need surgery – the radiation had already begun to do it’s job but would continue to do so for a total of 6 to 12 months. With that being said, they would do a follow up scan at 6 months – if there was any sign of mets. in the lungs (even if it were just microscopic), they would do another dose of RAI. If there is no sign of it, then I would still continue to do my follow up at 12 months, which is typical. Obviously, this was good news to know that the RAI (Radioactive Iodine) was doing it’s job but very nervous to know what was to come. In other news, my hormone meds had to be adjusted again….sigh – another couple months of getting acclimated to the new meds.

2. Anxiety….again:

Of course, as with each time my Thyroid hormone has been increased, my anxiety meds has needed to be increased as well. But when you deal with anxiety issues on a day to day basis, you have a constant battle with yourself – I knew I should have talked to my doctor a long time ago letting him know that it wasn’t working any more BUT instead, I worried about having to change anxiety medications and going through a month of changing (basically having to go without during that time). So in turn, I went without enough anxiety medication for 3 months because I didn’t want to deal with that. It just goes to show you how unrealistic something might mean to someone but to someone with anxiety, it makes perfect sense. FINALLY, I went back to my doctor and they gave me an “add-on” anxiety medication because mine is just an one dose extended release and unable to increase the dose – so it was an easy change that I could have avoided many, many anxiety attacks if I would have just talked to my doctor. Eventually, hopefully, I will learn. ๐Ÿ™‚

3. Thyroid Ultrasound/Lymph Node Mapping – 3 Month Follow Up after RAI (6/10/15)

  • First of all, how is this even possible, how has it been 3 months since RAI (aka internal radiation) already??? They do this just to look at the Thyroid bed for any abnormalities and they do another lymph node mapping (which they did prior to the surgery). As a reminder, they removed 56 lymph nodes from the central and left sections of my neck during surgery. During my whole body scan, they found one additional lymph node (which is not uncommon when there were that many to remove – actually it’s crazy that there is only one left over) in the left section of my neck and mass/or very large lymph node behind my Thyroid bed. When they started the ultrasound, it’s always so uncomfortable because you basically have to bend your neck backwards so they can reach everywhere they need to be. They first checked my Thyroid bed (where my Thyroid was originally) to see if there was anything there that they could see that would be of concern and there was not. Then they moved on to the the lymph node mapping – starting in the central section of my neck. All of this is fairly uncomfortable, as I mentioned before, not only because of the position that you have to lay, but also because they need to put some pressure on your neck to get a better picture and in order to move the device in different directions. After not seeing anything, she moved onto the right sectioned my neck, and again saw nothing – this side was never a problem for me as they have never see any abnormal lymph nodes. Moving to the left side they knew I should not have any lymph nodes because it had only been 6 months following my surgery. The one lymph node they saw in the WBS (whole body scan) was no longer seen so that must have shrunk with the RAI – yay! Then checked along my collar bone as they did before and that’s when they found two new lymph nodes….yes two new ones and at that point I could no longer keep it together – it took everything I had not to have another anxiety attack. My SIL had been there to hold my hand the whole time and kept trying to make eye contact and I just couldn’t – as I had tears rolling down my face the Ultrasound Tech asked me when the last time I had my Thyroglobin levels checked (this is what typically detects cancer levels for Thyroid Cancer patients – I get my tumor marker checked every 3 months). I knew at that point it was not good at all. I let her know that I just had my blood work done yesterday but hadn’t gotten the results yet – she said that I should try to get them back soon. At that point she continued with the exam and measured the lymph nodes – then explained that one of them looked ok because it was “fatty” which is normal. But the other didn’t look so good so she was going to get the Radiologist to take a look and we would go from there. Lastly, she looked at the lymph nodes just below my collar bone – they do their best to check the lymph nodes over the chest and they didn’t see any abnormalities so again, that is great! When she stepped out, I started balling and my SIL gave me a big hug and made sure that I knew that she was there. Because my Hubby was still on night duty, he was home sleeping and she asked if I wanted her to call – and of course I did. We had some troubles reaching him but she continued to try. When the Radiologist came in and did the same exam and basically confirmed what the Tech explained – they are one of the few places in the country that will do a biopsy and will do a pathology report and provide within minutes but all she needed was my Endocrinologist’s approval. We were taken to a VERY small changing room (yes…a changing room) to wait to hear back as to when we could do the biopsy. A VERY long 45 or 50 minutes later they finally reached my doctor and we were ok’d to do the biopsy. When I did the biopsy before – it was a very long drawn-out, outpatient procedure at an hospital. But they just took me back in the same ultrasound room, same gown, had me lay down, and without any numbing meds just then and stuck me. And that wasn’t before she informed me that because it was very close to my scar – there was a huge build up of scar tissue, consistent with an extensive surgery like mine (I can’t remember what she called it) and even huge motorcycle macho men scream and cry like little girls so if she hits this spot it’s going to hurt really, really bad. Of course, my wonderful SIL, tried to calm me down because they wouldn’t allow her to hold my hand, she was trying to talk me down, but the Radiologist just kept talking about how much this guy screamed and cried and they had to hold him down. Lol thankfully she didn’t hit that spot and it wasn’t as bad as I thought it was going to be without the numbing meds. And sure enough, within 3 minutes we received great news of the lymph nodes being BENIGN!!! WHEW!! 
  • At that point I was able to shed some more tears: happy, relief, scared, sad, mad – all at once. Of course, happy and relieved that everything is good. Scared that it could still turn into something later. Sad and mad that this will be something that I will have to deal with, with every 6 month ultrasound and every 3month tumor marker and every yearly Whole Body Scan. Eventually I know that it will get better but in the mean time, I was on a emotional roller coaster that I couldn’t get off of. Then when I called my family to tell them what had happened that day – I couldn’t even pretend that I was happy. And I know a few people were upset with me and/or a little confused because they thought I was being pessimistic or negative about things when I needed to be positive but I wasn’t ready. I needed a couple days to get past it. I needed to cry it out and be mad. I am a still positive person and know everything is going to be ok but this is scary still. And this is again why I have created this blog – because Thyroid Cancer (nor ANY cancer) is NOT the good cancer!!! 

I plan on keeping up with my blog again – I’ve forgotten how much it helps me and I’ve even gotten a few requests from fellow ThyCa Survivors! I love it – it’s good to be back! ๐Ÿ™‚