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elly56 Member Posts: 2
edited March 2014 in Thyroid Cancer #1
Below is my story from start to finish. If you are interested go ahead and read it, it not God bless you and may your experance be liveable if not sunshine and roses.

But befor you start my saga let me hear from someone who is still new to the game. I still have blood work every 6 weeks and see my doctor who ups my meds another 0.025. I'm at 0.75 now and he feels it could take another 9 months to a year to get to the right portion. I'm wondering if anyone of you have real fatigue, forgettfulness, skin feels to tight, eye sight goes crazy, and skin so dry I'm concerned it will just tear? My doctor keeps telling me that it is only temperary but I just seem to have more bad days than good.

Where do I start on the saga of scary days, tears, fear, and joy. As most of you know I had been having problems with my Thyroid. I went to a physician assistant out at the Army Air Base because I was just so tired
> all the time and was having weird little things going on with my body. A
> problem was detected based on a blood test and thank God Capt. Reynolds,
> the physician assistant who called me at home late one night back in
> March, wanted me to have the blood test repeated to make sure that the
> readings were correct. The blood test came back and my thyroid appeared
> to be irregular in a odd way so Capt. Reynolds said she wanted to have it
> checked out by an endocrinologist, this was early April. The first visit
> to Dr. Iudica, the endocrinologist, was low keyed - more blood work and
> setting up of a future appointment. The second appointment we were
> informed that a sonogram was in order so we set that up. Now we were in
> the latter part of May. The scan showed that there were 5 nodes in the
> thyroid with the largest be larger than a large chicken egg. This really
> surprised me because there was no visual distortion to my neck and neither
> the doctor nor I could "feel" the nodes. Dr. Iudica said she wanted to do
> a biopsy to see if there was cancer in the nodes. The next week I was
> back in Dr. Iudica's office and she was saying that since the biopsy was
> "inconclusive" that the best action to take would be to remove the thyroid
> and go on thyroid replacement for the rest of my life. While all this was
> going on I got weaker and weaker developed a hacking caught, couldn't
> seem to concentrate on anything and walked around like a space cadet most
> of the time because the thyroid had quit putting out the hormones that the
> body couldn't do without. I was eating up my sick leave at an alarming
> rate.
> Another thing going on in our lives at the time was I had paid for us to
> go on a tour to Spain the week of May 26th and I really didn't want to
> miss out on the fun -- keep this bit of information for future use. Dr
> Iudica felt that I could wait until I was back from Spain to schedule a
> second opinion and the possible of surgery. That night I had a dream that
> the surgery should not be put off so the next day I asked another
> endocrinologist, Dr. Curry, to look at all the tests and stuff and see if
> he agreed with Dr. Iudica. He agreed with the findings but differed on
> delaying the surgery - he stated that from what he was seeing he felt that
> the thyroid was pre-cancerous and had to be removed ASAP. Before going to
> Spain I saw Dr. Waizenegger, the surgeon, about having the thyroid
> removed. The surgery was scheduled for June 14th and my trip to Spain was
> put on hold. When I called Enjoy Tours about getting a refund I was told
> they would refund my tour monies but not Dan's so I reschedule to take a
> tour to Paris in July.
> June 14th found us leaving the house at 5:00AM in order to be at the Army
> Hospital at 6:30AM. I went to la la land and my thyroid said bye bye to
> me. I woke in ICU with a nurse on one side of me and Dan on the other. I
> had been in surgery for 6 hours. As far as pain from the thyroid location
> I had a sore throat from the breathing tube but no pain in the throat
> area. What hurt was my left buttocks - laying in one spot for 6 hours
> bruised all the muscles and tendons - these are still saying HELLO to me
> if I sit more than a few minutes. Dan was always there to either rub my
> butt, read out loud, or just kind of hovered in his special way. I thank
> God for him everyday. I was able to get up as soon as I felt like moving
> which was a couple of hours after I returned to the world of the living.
> I started the thyroid replacement and felt so much better that I didn't
> want to lay down to nap or sleep at night. Part of this could have been
> the fact that the bed was a torture machine from the dark ages - hard as a
> rock and plastic covered so I would sweat as soon as I laid down. The
> food was horrible so I only drank juice and ate cereal. I was in a room
> by my self and since the TV only had one station I occupied myself by
> reading 3 books until they let me go home the following Sunday. I did
> learn a lesson while in the hospital and that is to make sure you are
> getting any medicines that you normally take. I thought (dumb me) that
> the doctor would read my chart and realize that I needed to stay on my
> meds. for fibromyalgia - Sat. night I had a horrible attack and all the
> nurse could do was pat my hand and try to calm me down while we waited the
> 2 hours for the attack to pass. I only had to stay in the hospital until
> my calcium was being properly regulated by the glands that were disturbed
> while taking out the thyroid - calcium out to be just fine. Here is
> something surprising - in the states if you go into the hospital for
> removal of a hang nail you have to leave the hospital in a wheelchair.
> Here I was leaving the ICU, tired out quickly, and walking out of the
> hospital down the longs hallways using my 4 wheeled walker - which I
> thanked God I had with me. Dan was really upset about this aspect. I
> took off the following week from work and returned to Dr. Waizenegger
> office for an appointment on Fri. June 21st. I was not surprised when she
> said that there are 3 types of cancer that attacks the thyroid and the
> most aggressive of the 3 was what I had. Tears built up and rolled down
> my face as I held hands with Dan and asked what the next step was.
> Turns out that the thyroid sits in what is called the thyroid bed and that
> particles of thyroid tissue were still in the bed and these tissues would
> carry the cancer cells. These cells had to be killed off ASAP so any
> possibility of cancer would be dead. The first step was to starve the
> body of the thyroid hormone. Once the "count" was high enough I would
> have to take an iodine radiation treatment which would go straight to the
> lingering thyroid tissues being deprived of the hormone. I stopped taking
> the thyroid replacement and started getting tired, coughing, lack of
> concentration, and having problems walking. After a week of going downhill
> quickly I had some blood taken. If the count became high enough prior to
> Aug. 1st I could possibly have everything done here in Germany, but it
> really didn't look good because of the availability of the room where the
> body scans were done. Having relatives in both Jacksonville and Atlanta
> made going back to the states not quit as scary as it would have if there
> had not been anyone. After much discussion we decided to talk to Sam and
> Jo and they agreed that if I had to go back to the states for treatment
> that they would be more than happy to make sure I got to doctors and such.
> With that worry off our minds, Dan and I went to the office and told my
> team leader, Charlie, and section chief what was going on and the fact
> that I would probably run out of leave if I had to go to the states for
> treatment. After I was done and we discussed some options, I asked
> Charlie if he minded that I address my fellow workers so they could hear
> this from me and not through the grapevine. Charlie said he thought that
> was a good idea and he would check on if the Government would fly me to
> the states for medical treatment, what had to be done to borrow sick leave
> and get on the leave transfer program.
> Kyle gathered all my co-workers. By this time I was using my walker all
> the time, the coughing had gotten so bad that there were times I would get
> dizzy, loosing my voice, and most of the time I was either burning up or
> freezing because the thyroid controls your felling of hot and cold. I sat
> on the walker with Dan standing across from me and started telling my
> co-workers what was happening and what we might have to do. When talking
> about going to the states for treatment I mentioned that I would run of
> out of leave and have to get on the leave transfer program. I also
> mentioned that since I was the primary I would have to give Dan my power
> of attorney so he could arrange everything to get us packed out for the
> move back to Atlanta. When I mentioned that Dan would need help and
> everyone started telling me not to worry that they would all help in
> anyway they could, I started crying. I had never felt so much love in an
> office as I had at that moment. After I got back to my desk and Dan had
> left, people started coming by to say if I needed the leave they would
> donate anywhere from a day to 2 weeks. Charlotte came to my desk and said
> that Dan could not stay here while I was in the states, that we were so
> close that he had to be with me. She suggested that I have someone here
> at work have power of attorney. I asked her if she would be willing to do
> that and I also asked Greg. They both said they would do it including
> selling our old car. I think I cried most of the day because I never knew
> these people thought so highly of me and would help me in my hour of need.
> That same afternoon I received a phone call from Dr. Iudica saying the
> count was high enough to do the treatment. God worked fast on this
> one!!!!!!!!!!
> By this time I had changed the Paris tour to the weekend of July 12th.
> Both Dan and I thought the treatment would be a one time shot or something
> like that - little did we know! I reported to the hospital on Friday July
> 5th to take the radioactive iodine tables. The 8th I returned to the
> hospital for the scan - how about 2 1/2 hours to do the scan. It was
> determined that there were some thyroid cells in the thyroid bed. I was
> told to go to Dr. Iudica's office and arrange an appointment. I saw Dr.
> Iudica in the hallway and told her what was happening and she said to come
> in the next morning and she would admit me. For some reason neither Dan
> nor I heard the word "admit". The next day figuring that I would be at
> the hospital all day I took 2 books with me but nothing else which was
> really better that taking a small suitcase with changes of clothes and
> such.
> Dan and I were sent to the isolation wing of the hospital and the
> radiation specialist told me that someone from the lab would be up to give
> me 2 radiation capsules. I would be in isolation for at least 6 days if
> not more. I would not be able to leave my room until the radiation level
> was down to 1.5 or leave the hospital until it was down to .5. Dan waited
> until the guy came with the pills. This guy walks into my room pushing a
> cart that has a lead box with 2 glass tubes in the top. Each tube was
> about 10 inches long with a capsule at the bottom. I took the capsules
> and Dan was told to wait outside. After about 5 minutes the radiation
> guy, John, comes back and takes a reading with a Geiger counter and the
> needle goes off the scale. Dan was still in the hallway and thought he
> couldn't visit me later but was told he could visit but I would have to be
> in my room and he would have to be leaning against the far hall wall. Too
> bad they didn't tell him he could only be there for 10 minutes. It really
> wasn't worth his long drive back down from Klein Winternheim.
> Day 2 of isolation Dan was able to visit me for 15 minutes with me in my
> room and him against the far hallway wall. That night I had really bad
> coughing spell causing me to pass out. When I came to on the floor, I
> realized what had happened, got myself off the floor, and rang for the
> nurse. The nurse had been in my room earlier that evening so part of her
> total 15 minutes had already been used up. Anyway she sticks her head in
> the doorway, assess the damage from a distance, tries to calm me down with
> soothing words, then says she would be right back. -- Now you will know
> why I had been giving the day by day narrative. A nurse from up the other
> end of the hall comes down to **** the damage up close and says he is
> going to call the doctor to see what she wants since I hit my head really
> hard. The waiting seemed to go on forever, then finally I hear this voice
> saying that doctor wants pictures of my head and "they", the team at the
> other end of the hallway, was trying to figure out how to do this since no
> one could stay in my presents longer than 15 minutes. Unbeknownst to me I
> was the topic of discussion as to who could "run" the fastest. I was put
> in a wheelchair and rolled out into the hallway. This young Army guy
> starts pushing me as fast as he can run. Now the lab is over a few
> hallways and on the next floor. We couldn't use the elevator because it
> is a closed room. It was about 2:00AM so there wasn't any worry about
> radiation lingering in the hallways and being harmful to others. We had
> to go down the ramp then down a few more hallways. This young man pushes
> me into the lab and leaves, checking the time. I was helped onto the
> table for the scan and then helped back into the wheelchair. Once done,
> the young man takes off running again down the halls, up the ramp, and
> down the rest of the halls to my room. As I settle back in my chair he
> checks his watch and is very relieved that he had a few minutes to spare.
> Added benefit was after being so hot the "wind" really felt good on my
> face.
> There were some interesting things/facts and such that went along with
> this treatment. No one was allowed to touch me. For the first couple of
> days I was "too hot to handle." I have heard that saying all my life but
> never knew what it meant - don't tell me it doesn't mean hot with
> radiation! It was good that I just use reading glasses because my glasses
> got thrown away before I went home. I had to take 4 to 5 showers a day
> and had to keep my room hot so I would sweat out the radiation. Every
> time I took a shower my beautiful hospital gowns and all the lines had to
> be put in a bag which would be stored for about 6 months and then be
> treated. I think the 6 months was so they would have enough linens and
> such to make the treatment cost worthy. Every time I peed I had to pour
> it into a bottle that was placed in a lead box. The pee bottles would be
> put in lead containers to be shipped back to the states to be stored as
> radioactive material for 10,000 years. At no time did John step into my
> bathroom before I was ready to go home. He said that my pee was a deadly
> weapon. I suggest that we send it to wipe out the terrorists! Any book
> or magazines had to be either left in the room for the next patient or
> thrown in the bag to be burned. I had to get my food tray from outside my
> room in the "clean" room and place the tray back there after I ate. The
> John had to take the tray because of the radiation. These were treated
> for the radiation. Everything on my food try was in plastic or Styrofoam
> which I had to put in a separate bag. The linen, trash, and biodegradable
> bags were picked up once a day by John. John got real concerned about the
> priest that was coming by the room everyday to bring me the sacrament. I
> mentioned to him that the priest would stand right outside my door and
> have me at the door on my side. We would say a prayer and such and he
> would leave the sacrament on a napkin and step out into the hallway.
> Well, he goes to his boss and the next thing I know the boss is up asking
> me about it. Guess the priest thought the good Lord would protect him -
> tan't so. It was arranged that he could stand outside my door but I had
> to be sitting on the bed or he would have to be out in the hall on the far
> wall and I could be in my doorway with the door open. Very important
> thing to remember with radiation - if exposed you don't feel any
> different! During the whole time I really didn't feel any different.
> The days past based on what Dan and I could do. Day 3 he could sit in the
> hall and talk as long as he wanted. Day 4 I could get a hug (not a very
> long one - but a hug). Day 5 we were able to walk out and hold hands as
> long as I was wearing a latex glove - we went to burger king for a burger.
> Oh, I had to avoid children and pregnant women. Day 6 we could kiss but
> no sharing "spit." Day 7 Free - free at last and headed home.
> While I was in isolation I called Enjoy Tours to try to change our tour
> date since if I went I the tour I would have exposed everyone to
> radiation. The gal says "Since you have already changed this so many
> times you will have to pay a fee to change it again." I said, "no way" so
> we argued for a bit and then I asked her if she was married. She said
> "no" and I asked if she had someone special and she said, "yes" I said,
> "If you were sitting in isolation in the hospital would you want that
> person to go on a trip to worry about you the whole time." I asked to
> speak to her supervisor. I requested that the supervisor allow our monies
> to be refunded without penalty because of the circumstances. She said she
> would have to talk to the owner and get back with us. After a few days
> she called Dan and said she would refund the monies. And now you know the
> rest of the story.
> This is my second week back at work and everyday is an improvement over
> yesterday. We are trying to get all our ducks in order to move back home.
> We will fly back to Atlanta Sept. 23rd and I will report to work on the
> 25th. I know most of the people on my new team and am looking forward to
> working with them. It will be good to get back to dealing with
> contractors that speak English and know how to read. As far as what does
> the future hold for these wondering Beales we really don't know. We have
> a few options. Dan is now collecting his social security which opens up
> to possibly more traveling and I haven't seen Paris or St. Petersburg. I
> have decided that I really enjoy my type of work so I probably won't
> retire unless I'm offered VISP which is a pay incentive for leaving
> Government service, or maybe I'll try to get another overseas tour in
> another year or two. Those of you that really know me know that when
> making real decisions that affect our lives I think of all the different
> things I could do before I decide what I will do and then it is still open
> to change. Dreaming is the joy of the journey.
> Love and God bless each and everyone of you,
> Elly