Kathleen Donahue’s PTC Treatment Updates

First off, the iodine pill treatment went pretty well. No crazy side effects, just REALLY tired the past week!! Last Saturday, I slept in and then slept most of the day…I barely had energy to pull myself off the bed to answer the phone. I came back to work at my office on Tuesday, and I have just been battling fatigue and a sensitive stomach the last few days. Overall, it was pretty tame.

I did go for a nuclear body scan today. They took about eight different six-minute pictures of different parts of my body. The doctor just called me with the results. He said it was an excellent report. The only areas that “lit up” were in the thyroid/neck region, the salivary glands, and the urinary tract (all expected and no unpleasant surprises.) So, I am pretty sure this means that the cancer was only where they thought it was (neck/thyroid), and the visible presence in the salivary glands and urinary tracts are just normal course of the treatment as the iodine is excreted through the body. I asked if whatever was left should be “killed” by the treatment and he said yes. I also asked about the lungs specifically, and he said he checked them and saw nothing. So, this is very good news. He said he does not feel it is necessary to follow up with me at this point. I will be screened through regularly scheduled blood tests (probably every several months) ordered by my Endocrinologist. I am very happy to hear the news and although no one seems to label it as such, I feel like I can consider myself cancer free!!!!

I will begin the Synthroid pills (artificial thyroid hormones) tomorrow and I should be back to “normal” soon. My next appointments are just follow-ups/check-ins with the surgeon in late November and the Endocrinologist in late December. My scar is healing very favorably and I would say I am about 90% on full arm and neck movement.

Thanks again for everyone’s thoughts, prayers, and support throughout the past several months! I think I have managed to stay light-hearted about it all, but there were times when I was pretty freaked out. The support around me helped immensely!!!!!!!

I leave you with a little Trick-or-Treat Game!!!! Guess the Doctor!!!!

Kathleen

Well, this morning I left to get my iodine pill. I was given a pamphlet from my Endocrinologist on the Nuclear Medicine Doctor that contained the map to his office. Naturally, when no one mentions otherwise, I show up there. I get to a door numbered 210 and I have to knock. A nurse comes and then she quickly figures out that I am in the wrong place….that is where I go for my body scan next week. She was super sweet and sent me up the road to Medical City of Dallas and called them to let them know I was coming. However, she quickly lost some brownie points when I pull up to the hospital and there is Buildings A-D. She could have tipped me off on which one! So naturally I end up parking in the furthest, have to walk through a freezing hospital that operates like a three-ring circus. I found my way to radiology and then checked in. What a surprise - they have no record of me at check-in. So, they call over to nuclear medicine and then they say yes to come over, they are expecting me. I get led to a rather generic room and am asked to sit down. After being ignored for about 10 mins while I listen to the nurses chatter, I am beginning to wonder if this is the right place for me, lol. The doctor comes by and he is quite the character. I am sure he is on top of his game, but his game is a pretty tight court of radioactivity. He apologizes for all the confusion and then tells me he has to jet soon, so he will go over the nuts and bolts of the risks with me and then I will go down, register with the hospital, then come back up to get the pill from a nurse. So we go over the basics and then I sign some papers. I am doing the optimal he said - staying home by myself. The restrictions were lighter than some of the things I read online. They suggest avoid public places for two days and then limited interaction on third. But then back to normal after that—I guess that is when your body stops emitting stuff. I guess some people just stay in one room of their house if they have a family there. He said anything I really contaminate in my house….like he surface of this keyboard if my fingers “sweat” on it, should be fine by after about 3 days after my initial 3 days. I am being extra cautious, like flushing multiple times, spraying some cleaner in on the second flush; spraying shower down, spraying sink. Plus, I bought all disposable stuff to use in the kitchen and bathroom for the next couple of days. I will also wash everything twice. Probably overboard, but oh well.

I then got escorted to admissions, which is a total zoo. No one can seem to figure out how my record got overlooked and I keep hearing different people coming up and asking “do you know anything about Kathleen…” “do you have a file for….” The lack of communication at this place was astonishing! Finally I get admitted and then get taken back up to the nuclear department. A nurse comes back in and starts double checking all her papers to make sure she has the right person. That’s when I started double checking everything too…visually and verbally. I didn’t want to swallow the wrong damn pill! And that’s when I heard the word millicurie. Had a nice ring I guess. I was prescribed 100 millicurie according to her. Alas, she comes into the room with latex gloves on and a silver canister about the size of a coke can. It clunks when she places it down on the table. She then unscrews it and a small plastic vial holds the pill. She then goes to get me a glass of the faucet’s finest and then says for me to take the pill. First, I read the tiny label on the plastic vial just to double check everything looked kosher and it was MY name on it! Here is where is gets a little odd. She just walks off into the next room and carries on about her business. She didn’t even witness me take the pill. I would think that would be some kind of safety issue. It’s not like she seemed intimidated by the pill’s presence either. Kind of strange I thought. Well, then she comes back in with my parking pass and tells me I am free to go! Wow, that easy…kind of.

I came home and had some work to catch up on. I have been feeling no different except for extremely tired. I debated whether to try and write this from my phone on my bed…. Side effects (mostly sore throat and cheeks set in on Day 2 usually if they appear.) I am supposed to drink lots of water….like gallons per day according to the Dr. and continue low iodine for about a week. He said I can start the Synthroid in about a week—or earlier if I get desperate. I am going to try and wait it out. I go for a full body scan on Thursday then I should be back to normal — well with a slight ramp up period on energy as I get used to the new hormones.

Ok, off to bed to catch some zzz’s!!!

PS….I asked about glowing (I wasn’t 100% sure going into it, lol….he said no.)

I found out today that my blood results indicated my body is prepped for the iodine treatment; I have an appointment mid morning on Thursday in Dallas to get the pill administered. I also found I am deficient in calcium again…back to daily doses!!! Will update on Thursday….

First off, I got a good report from my surgeon on Wednesday….I will do a follow-up with him in six weeks. I also saw my Endocrinologist on Wednesday. It was a fairly quick assessment. Some things will probably start moving into place next week. Monday AM, I will go in for a blood test, which should be returned Tuesday. If my thyroid levels are low enough, he will then refer me to a General Nuclear Medicine doctor to get the pill on Wednesday. After that, I will go home and stay away from others for three days. (Since it is radioactive iodine - any thyroid cells/tissues remaining will absorb it and die). The rest is passed through the body. I think the worst of the treatment is just fatigue and swollen salivary glands. (More on that here — http://www.thyca.org/rai.htm) If my thyroid count is not low enough, they continue testing my blood every two days until it is low enough. In order to help make my body starved for iodine, I have been on a low-iodine diet for the past week, which is no easy feat. No dairy or anything from the sea. Salt is okay if it not iodized. Since you can’t be sure if restaurant or processed foods contain iodized salt, I have been making a lot of things from scratch!!!

Well, I will update again next week! Have a great weekend!

Kathleen

This week I will meet with my Endocrinologist, as well as check in with my surgeon. I have stopped taking the Cytomel -the artificial thyroid meds I have been on- as of last Wednesday and will continue to not take them up until I take the pill treatment. I am not sure what the absence of the hormone will fully entail….so I have tried to rest as much as possible this weekend in prep. I have some blood work scheduled on Tuesday and I hope to get an idea of the pill treatment schedule this week so I can prep for the aftermath….I have to avoid contact with others for several days after it is administered. I have another trip to Austin planned, so hopefully the timing will work out. I also am scheduled for week-long appraisal classes in Plano the week after, so my fingers are cross that I can get the treatment out of the way so that I can carry both plans out.

As far as my physical movement, I am doing much better! I will continue to do PT, but I think I will curtail the frequency since I am doing good.

I want to say thanks to everyone again. It is amazing how many cards I still receive in the mail and it is really heartwarming. I feel so lucky to be surrounded by so much support - from friends, coworkers, family, and quite frankly…strangers. Through passing and a comment of the scars on my neck, a guy I met today told me that his sister passed from stomach cancer last year. He then proceeded to give me the Livestrong bracelet off his own wrist. It is instances like this I am reminded that I am extremely fortunate to have been diagnosed with a form of cancer that is highly curable. I often forget that I will be a cancer survivor…or at least that is the plan! Breast Cancer Awareness Month has also made me realize that cancer is so prevalent and it not until you or someone close to you is affected by it truly understand its threat. I know my diagnosis has changed my life forever.

PS….an update on Jed and Erica (my brother and sister-in-law who embarked on a year-long worldwide journey in August): The last I heard, they were in Cambodia. They were considering Bangkok next, but were possibly going to revise the agenda due the instability of the area or U.S./world climate…not really sure on that one. Jed’s back gave him some trouble when they were still in China, but I heard it is doing better. If you guys read this, give us an update!

I will post again when I get the final game plan in order!!

Kathleen

Since my last appointment, I did not hear from the nurse about scheduling a drain insertion until yesterday. In that time, my swelling drastically improved. So, I told her I wanted to get checked out again to make sure it was truly necessary. I just got back from a check-in with my doctor and he agreed that the improvement was measurable. He thinks the duct is sealed/repaired and that whatever excess fluid left in the area will be absorbed in my body in time. So, no drain for me! He said he was very pleased because he was thinking about/researching it a lot over the past few days. He even told me to tell my mom he was “happy.” (He said he knew she was concerned and is always wanting to hear his take on the situation!) I will check back in in two weeks.

I am still Physical Therapy and it is going well. My shoulder is sore to the touch, and range is still limited without assistance of my other arm; however, I continue to work on stretching it out. My neck movement is really improved too. I was in Downtown Dallas yesterday meeting for a breakfast meeting and while trying to park in a meter spot, I accidentally backed up into another car. Although I could blame it on my neck’s lack of range and motion, it was probably just my lack of city driving skills combined with the morning rush! Luckily, it was minimal damage to both cars…the lady I hit suggested we skip the insurance exchange and I just give her $20. Go figure! I didn’t argue though…I really did not want to add another claim to my insurance!

Next steps for me are ceasing my thyroid medication on October 8 and adopting a low iodine diet. This is to “starve” any remaining thyroid cells and decrease iodine in my body. When I take the radioactive iodine pill (probably around October 22), the iodine is expected to be quickly absorbed into any remaining thyroid cells and kill them. They follow that up with a full body scan. My treatment is really then over, and I will then just be screened every few months. I meet with my second doctor and the pilot of this treatment, the endocrinologist, on October 20.

I will be off to Austin this weekend for a baby shower of my friend Courtney. I am really looking forward to hitting up some of my favorite spots. My first stop will be a mojito at Saba!

Well, yesterday I went to the doctor to check in on the swelling. No significant improvement was noticed. After discussing the severity of chyle leak/fistula, my mom and I were both relieved after my doctor explained that it is not a serious condition. Despite this, it does need to be closely observed. I complained about the awkward pressure dressing and my doctor told me we could try and get away without that. I told him my low-fat diet has been going well, so he was content with a continued monitoring approach. He did ask if I would be okay with him aspirating it (basically a needle pulling fluid out of the area) again, as this is what he did my last visit. Even though he does not use a numbing agent, I can barley feel it as my neck is already numb on its own! So, I agreed and he left the room to get the supplies. When he returned, he brought back the senior partner of the practice, whom I kind of met — he was in and out for parts of my surgery. My doctor had the needle drawn when the other doctor intercepted and asked if it is really necessary. I really think he was trying to save me the agony. However, he really doesn’t know it doesn’t hurt me that much!!! After some chit chat and small talk as he reviewed my neck, it was apparent my doctor had just gone and vented to him that he is kind of stumped on what to do next. The two agreed that putting a drain back in would be best, as it would not only relieve swelling but it might take the pressure off the “faulty valve” and let it heal quicker. How the drain was to get in wasn’t clear….my doctor said he would talk to a radiologist at the hospital. Radiologist? That just seems odd! Regardless, the two were headed to the hospital that afternoon, so they were going to investigate possible avenues to get a drain put in. I have not heard back, but I expect that I will have one put in on Friday 9/26 or Monday.

Of course a drain is not desirable, but I really just want to get back to normalcy the fastest way possible. Maybe it will be small and I can hide it well! Other than that, I am feeling well. Therapy is going great; I sense significant improvement in my arm, and my neck movement is coming along. I am back in my office and driving. Driving could be better…I catch myself turning my whole body to look for oncoming traffic, and I have to hold my seatbelt off my neck!

I hope for a relaxing weekend! I am thinking of spending a day/night in Arlington. April, who is a mom-to-be for her second child (have you heard if it is a boy or girl yet?? I have!!), will be in town. Perhaps a Bear-a-Hue meeting is in order! Of course, this is also the weekend of the annual picnic at St. V’s, as well. I heard they have some fabulous gift baskets to auction this year, lol! Maybe I’ll see ya there!

Kathleen

Happy 61st Birthday to my mom today!

The dogs are home! Thanks to my mom for bringing them over on Saturday!

Overall, things are good. I went to physical therapy last Thursday and that was good. I think it will really help with my left arm flexibility and next movement. I go back Tuesday, 9/23.

Here is a picture of what everything looked like on Friday. I actually think the scar won’t be that horrible after some time. I still have swelling and a little bit of numbness on my left side of my cheekbone.

When I went to the doctor on Friday, my swelling in the general area was still a concern. He called it a chyle leak…. I was just now able to figure out how to spell chyle right and read up on it online. Here is a good page if you are interested.

Editorial: Complications of Neck Dissection for Thyroid Cancer

It appears to be an uncommon complication with neck dissection, but if property managed, it can be cleared up with pressure dressing and an altered diet. The flow of chyle through the thoracic duct is tied to triglycerides. My doctor actually pulled some fluid from my neck via needle. It looked like milk. He then set me up in a very barbaric pressure dressing. It is basically a wad of gauze bunched up at the site, with a sling setup that crosses over my chest and under my arm (over the wad to cause downward pressure). This is all in efforts to keep the leakage down. I am also supposed to be avoiding fatty foods, so lots of fruit plates going on here!

Hopefully this will start to go down soon, because the pressure dressing is annoying…it kind of strains the neck and I feel like I look really stupid! I go back for a check-in on Thursday, so hopefully things will have started to turn around by then.

Kathleen

Well, my birthday wish came true….I am now drain free. Yeeeaahh! I feel a lot better already! I went to the doctor today and he took the drain out and also pulled off all my taping on my incision. I have dissolving stitches. The scar is long and strange looking, but I think it will be very thin and not very noticeable in some time.

I am going to get signed up for some physical therapy to ensure my left arm and neck movement don’t fall behind. Also, I am going to go back to my doctor on Friday. He noticed that I do have some swelling in the general area. He thinks it could be a hematoma - like internal bruising. He said it usually corrects itself and he was not too concerned. He did prescribe antibiotics to avoid any infection, and he wants to review the area again on Friday to see if there is any increased swelling.

Today is my 28th birthday. It has been kind of hard because my condition is kind of buzz kill. However, I remind myself I am very lucky to have found the cancer when I did and the successful treatment thus far…all which is reason to celebrate another year of life! However, I hope to be able to do some traditional celebrating with friends sometime soon:) Thanks for all the birthday wishes!

Kathleen