I spoke to a dear friend a day or so ago, and when she asked how I was, that is how I replied. Spent. I think that is the best way to describe it. It has been far too long since I have posted anything here...lovely souls and dear friends have been asking how I am and what has been going on. I have just not been up to writing.
I'll try to do a quick recap of the past two months (as you know I am not very good at "quick" anything but I'll do my best). I believe I left off sometime during the prednisone stage, and hoping to be able to get off antibiotic treatment after six months. Thankfully my favorite Infectious Disease specialist felt that it was in my best interest to stop the Levaquin (heavy duty stuff). We will never know for sure if the infection in my sternum has been completely cleared, there really isn't any way to tell, but my Thoracic Surgeon felt very strongly that he had removed the damaged area fully during my surgery. The antibiotics were basically insurance, and their downside had started to outweigh their benefit. I couldn't regain the weight I lost during surgery, I was so nauseous, and so fatigued. In other words, I couldn't get strong and fully recover from the surgery while on antibiotics. So the antibiotic therapy was stopped after 6 months, in the last week of April. I can't begin to explain what that first night off antibiotics felt like, not feeling so sick to my stomach and being able to eat whatever I wanted, whenever I wanted. I did not, and still do not, take that feeling for granted.
Unfortunately my lungs would not cooperate with this forward march in my healing journey. Every time I tried to taper off the prednisone, they would revolt. Up and down I went on the prednisone, three times. My nervous system was obliterated. Even after I was finally able to come off it completely, after about a month, my lungs were still not quite right. I still had a horrible cough, although my lungs were clear. Every day they were a little better, and so I weathered it. I had been coughing for a full FIVE months. A bad asthma episode led into a very bad allergy/pollen season (worst on record apparently), and my lungs have not fully recovered still. A dear friend who is a nurse recommended an herbal supplement specifically for supporting the lungs, and I believe that has helped. But to say that coughing and having trouble breathing for so long was completely exhausting is an understatement. I have been completely depleted and without a normally functioning nervous system for quite some time now.
I was finally able to make my appointment with the Head and Neck Surgeon last month after rescheduling at least three times. I have a nodule on my thyroid which has not been looked after in quite some time. It apparently "lit up" during my PET scans when I was first diagnosed with the breast cancer so of course my Oncologist wanted me to see the Head and Neck guy. I have had this nodule for about ten years, I have had biopsies and ultrasounds and it had always been benign. But I haven't had anything done to check it in about six years. I was a little busy with the divorce, then my mom's leukemia, then losing my mom, then my sternum infection...then breast cancer. Just a little busy. I have been Hypothyroid since I was 17 years old, from the radiation from the Hodgekin's, and apparently nodules are not uncommon.
The Head and Neck Surgeon at SK was wonderful and sweet, he felt that the nodule was benign but wanted to do a fine needle biopsy and ultrasound to be sure. He felt that even if we found it to be benign, that I should consider having the surgery to remove the thyroid because I am at risk for thyroid cancer from the high doses of radiation I received as a child, and because the nodule is quite visible in my slender, and as he said, "beautiful" neck (as I said, he was a sweetie). So we scheduled the ultrasound and fine needle biopsy, which was a week ago yesterday.
I had a difficult time the morning of the biopsy. I am usually fairly able to center myself before testing or appointments at SK, but that morning I was way off and couldn't ground myself. I really don't know why, I think it's possible that all these months of difficulties with my lungs, and all the steroid treatments and asthma medicines that had affected my nervous system had really done some damage.
They started the ultrasound and after a little while the technician started concentrating very heavily in the same spot. This is never a good sign. Then she went to get someone else, and whispered "see?" to the other person and they continued to whisper to each other. Very bad sign. I tried very hard not to have a meltdown. My nerves are so badly damaged. I started to repeat my Guru Mantra over and over in my mind, trying to calm myself. The second woman announced herself as a radiologist and then said she would be right back. The first technician started to tell me how they found something that would need to be looked at further, I honestly didn't understand a word she said. She said the radiologist would explain further. I love SK, they have saved my life, but in this case they really didn't handle this very well. The radiologist came back and explained that I had a blood clot. A blood clot? Very hazy after that. My nerves just would not cooperate. She mentioned I may have to go to Urgent Care. Urgent Care? I realized that was just a nice way of saying emergency room. They said they were contacting my Oncologist and would still go forward with the fine needle biopsy. Try staying still while someone sticks a needle in your neck and thinking that you're going to have to go to the ER afterward. I did though, very still. I'm a pro.
Then there was waiting while Cytology made sure that they had enough cells from the first stick to do the biopsy. Sometimes it takes up to three sticks. Lucky for me they had enough cells from the first stick. Lucky me! Turned out the needle in my neck was the easiest part of that morning, I was thinking, go ahead, stick me again. I may have left my body briefly during that time anyway.
Then more ultrasound to check the thyroid after it had a needle stuck into it, and more imaging of this "new finding". This was what they were calling it. I guess that sounds nicer than blood clot.
The radiologist then announces that she needs to show the additional images to her staff and that she will be back, and is out of the room in a flash. She left me lying flat on my back, in a hospital gown and full of ultrasound goo. Can I get up? Can I get dressed? I have spent enough time flat on my back, in a hospital, in a hospital gown...if I am done then this is not necessary. I sit up and try to get someone's, anyone's, attention out in the hallway. Finally I get the attention of the first technician. Can I get dressed? Do I need a bandage on my neck? I get a bandaid, which I found later was not even centered on the spot where the needle entered. Sticky bandaid end was over the spot. With that the radiologist comes back in with a post it note with my Oncologist's office number on it (which is programmed into my cell phone), with the instructions to call her in a half an hour. She is looking into additional testing, and that I can go back to the waiting room.
I am dazed and confused. I try to wipe all the goo off, then get dressed. I walk the wrong way four (yes four) times. I get back to the waiting room...and...no Eric.
Meltdown.
We had been running a little late on the way into the city, there was traffic on the FDR, so he dropped me off at the Main Hospital where I was having my testing and then went to park the car. When he hadn't gotten to Radiology by the time they called my name, I wasn't really concerned, there was probably more traffic, he probably stopped at Dunkin' Donuts for coffee (he did)...but when he wasn't there when I got back, two hours later...
I pull out my cell phone to call him, and there is no service??? I walk further and further and finally I have a signal. Why there was no signal in that area I have no idea. He answers and I say "WHERE ARE YOU?" Yes all caps, that was basically how it came out. He was in the wrong waiting room. Very confusing floor in the hospital, radiology, radiation, you say tomato, I say...you get the idea. He finds me, we sit down and I am trembling and counting minutes to call my oncologist, thinking that I will have to go to the ER. I try using all my tools and teachings but I am clearly beyond what my nerves have the capability of handling right now.
If you have read this far then you deserve to be sainted.
When I call my oncologist's office, the strangest thing happens. I fully expect that there will be a sense of urgency. I heard the words "blood clot" and "urgent care", wouldn't you expect urgency? I am told by the assistant that she will call me later in the day or tomorrow to schedule some testing. Huh? I said to her "I can go home?" I am so confused. She says, oh yes, go home, enjoy the rest of the day, nothing can be scheduled for today. But don't I have a blood clot? Don't I need Urgent Care?
I am so unsettled as we make our way out of the hospital, and walk a few blocks to get the car, and on the ride home. And as we get something to eat on the way. I am so unsettled. I get a call on my cell phone when we are almost home. It's my oncologist's nurse. She says they want to schedule a CAT scan. I remind her that I had a very bad reaction to the IV contrast during the last one I had, and can't go through that again. (My heart rate exploded to over 130 bpm, it had aggravated my arrhythmia.) Then another strange thing happens. I mention "blood clot" and she says that my oncologist was not told that it was a blood clot that they had found earlier, that it was most likely a post-operative change or radiation scarring, but wanted further testing to be sure. Huh? They most certainly told me it was a blood clot. Am I now walking around with a blood clot that can kill me in a second because of some miscommunication down at SK that allowed me to leave the hospital when I shouldn't have? I don't actually say that out loud, at least not like that. She assures me that it was okay to wait to do the testing, and says that it would also be possible, although not optimal, to do an MRI of the neck to check things out further. Too make an even longer story shorter, I have an MRI done the day after next, in the area where I live, and overnight the CD of the images down to SK to be received on Friday.
Then I waited.
Not just to find out about this maybe or maybe not blood clot, but also to find out if I had thyroid cancer.
All weekend.
Then Monday.
When I didn't hear anything by mid-morning on Tuesday, I started making some calls.
And then I had to wait some more.
The good, most excellent news is that the biopsy showed the nodule to be benign, and I don't have thyroid cancer. The surgeon and I decided to do a follow up visit and ultrasound in six months, and do some deciding about surgery then. We had originally planned surgery for the fall, back when I saw him last month. But I am too depleted. Spent. It will probably have to wait until next year.
Oh and I also have about a billion sites on my skin that are either definitely basal cell or might be, and need to be biopsied and removed (I've been just a little too busy to get around to that. For way too long). Another gift of the high doses of radiation that I had when I was younger. In my life I have already had upwards of 22 basal cells removed. My back looks vaguely like a map of the Highway System. I really need to have them looked at, it is soooo way overdue. So if I can hold off on thyroid surgery, I think I will definitely be doing that. And I would like some time to rest. To get on my yoga mat. To make some malas. A respite, if you will...if that's at all possible.
Because as of yesterday, Radiology is reviewing the MRI images, so I still don't know what the deal is regarding this "new finding". Yesterday I was told that my oncologist had been out of the office, and that hopefully she would have some information tomorrow. Which is now today.
So now there is more waiting.
I will try to post as soon as I hear, and just in general, to post more consistently, so that my posts don't all end up looking more like novels than posts.
Thank you all for all your love and support.
