True Courage

To combat weight gain, I joined the kids in taking taekwondo.  The place where we take it does something called, The Virtue Project.  They have 12 virtues and each semester, they focus on one of them.  Optionally, students can do a virtue journal, which is just a piece of paper with various goals, tasks, or suggestions of things to do to learn more about that virtue.  If students complete 5 tasks/goals and turn in their journals on time, they will receive a free t-shirt at the end of semester that has that virtue on it.
    This past semester was "Courage."  With treatment and the chaos, I forgot to pick up a journal, so I decided to write a letter.
    The following is a letter that I wrote to our TaeKwonDo instructor.  It documents my family members' reactions to all of my treatments.  I felt like it was a good summary of my experiences and thought it was worth posting... for posterities sake.   PS - the staff read the letter and presented all of us with t-shirts at graduation.  I think they felt like we understood what courage was and how important it can be.

True Courage

I cannot convince my children to work on the virtue journals… I guess because we have had a lot going on, maybe because school just started and they are all bogged down with homework.  Even though I don’t expect them to get T-shirts because they didn’t do their journals, I did feel as if I should share with you what I have witnessed in my children in the past few months because I think that they should be recognized, even if it’s just between you and I.  

5 months ago, I was diagnosed with Thyroid Cancer.   No one expects to hear the word “cancer” from their doctor and no one plans on getting it.  One of the most frustrating things for me was to hear, over and over in various forms, people say, “Oh, that’s a good cancer to get” or “If I had to have cancer, that’s the one I would pick.”  I understand why they say that, it’s because people can live a very long time with Thyroid Cancer (it’s slow growing) and because once you remove the Thyroid, you have removed the majority (if not all) of the cancer and therefor have a fairly good prognosis.  Over the past few months, I have come to understand that truly, there is NO “good cancer” and that no one would ever choose this one or any other cancer.  Theoretically, it is a simple process, but in reality, there is so much more than that.  There are risks to the surgery, damage to the vocal cords, the parathyroid glands, and various other normal surgical risks (blood clots, internal scar tissue, reactions to anesthesia, etc.)  There is no possible way to remove ALL of the thyroid tissue because of how it sits in your neck… so follow up treatment includes Radioactive Iodine to kill off that remaining tissue.  This carries it’s own risks, like being radioactive for a week, as well as possibly burning your taste buds, possible damage to your salivary glands and tear ducts, and possible rapid tooth decay.  All of this and because thyroid tissue is one that can regenerate in your body, there is possibility of reoccurrence of the cancer later on down the road.  This all seems like it would be a burden for me, and me alone, but it is not.  Being a wife and mother, this isn’t just my battle, nor is only my weight to carry. This has affected my family in ways I could not imagine beforehand.

T, my youngest, had only ever seen people get very, very sick and/or die from cancer.  In fact, she found out that I had cancer just about a month and half after her elementary school teacher’s husband (who was also one of our neighbors) died of cancer.  He left behind 3 little girls, just about her age.  I worried how she would react.  Overall, she has kept her concerns to herself, she has internalized it all.  She watches me like a hawk and likes to cuddle…  despite my attempts to reassure her of the future long life I intend to lead, I think she is afraid she is going to lose me.  However, she has shown a strength that no 8 year old should have to have… she amazes me!

M takes a more open and outward approach to her feelings.  She, too, likes to be near me more than before, however, she also asks a lot of questions and quickly, within a week of me sharing my diagnosis with her, became an expert on my course of treatment and followed up with me on every appointment.  She would know exactly when my appointments were and what we would be doing there and what was next.  She has been the most, outwardly, emotional through the process but it is because she cares so much.  She just wants everyone to be happy and healthy and it hurts her to see anyone having a hard time.  She has shown a deep compassion and love… I am in awe of her.

C has been the hardest to read.  Perhaps I can describe his change in behavior as growth.  He is typically fun loving and even a little goofy, but as he has dealt with his feelings and our family’s stress levels, he maintains a positive attitude but has also shown a maturity that I didn’t expect… he continues to surprise me.

S, being the oldest, has allowed himself to take the majority of the burden that the children carry… but in so doing has enhanced his greatest qualities and given me a great peace.  He has shown all of the reactions of all of his siblings, strength, compassion, and maturity, but even more intensely.  My health and the complicated dynamics it has created emotions that he has had to face head on and does with grace and dignity… he is incredible.

My husband carries the biggest weight on his shoulders.  He has had to worry about how to care for our children when I haven’t been able. He has been my chauffer to and from DC at least 7 times in the last 4 months… driving me 1.5 hours each direction.  He has had to sit by my side in countless doctor appointments and in the hospital.  He has had to worry about whether or not my treatment would work, whether or not my surgery would have complications, and whether or not we will be battling this for years to come.  He has had to do all of this while being the sole provider for our family and while interviewing for and starting a new position in his company.  There are no words to describe the love I feel for him.

Losing a thyroid is tough on your body.  Your thyroid regulates your appetite and metabolism, heart rate, and body temperature.  I have spent the last 2 years losing 80 lbs. and from the time of surgery in August, I have already gained 20 of that back.  I also get really fatigued as the day wears on.  Most of the time, I can not properly regulate my body temperature.  Weight gain, energy loss, and not being able to regulate body temperature is normal after a thyroidectomy, even on the synthetic thyroid hormone that I will take every day for the rest of my life.  The physical difficulties are nothing compared to the emotional roller coaster that we have all been on, but my family has demonstrated so many great qualities during it all, it has made it easier for me.  When I look over the past 5 months, I see one overwhelming virtue in all of them… true courage.  We were all thrown into a very scary situation for all of us and they have all faced it, dealt with, and have all come out stronger than when we started.  Because of them, my fear has been eased.  I am truly blessed.

More to tell but back to real life...

I don't have any MAJOR stories to tell or things to share, so I feel like I need to do a wrap up post and take a break.  I did a follow-up visit with my Endocrinologist after RAI.  She said that we just wait and check blood work for now.  We are watching my calcium level, as it has been low.  This is very common because of damage (during surgery) to parathyroid glands that regulate calcium intake.  We also will watch my thyroglobulin level to make sure that my thyroid tissue is being destroyed by my radiation.  Then, of course, we are watching TSH levels, this tells how we are doing with dosage.

We are still trying to get my dosage right... energy, weight, and temperature are still all major problems for me.
     Weight - I have gained about 25 lbs. since surgery.  It's frustrating after working so long to lose 80 lbs, to gain back 30 of it (5 before surgery, after my diagnosis) is super frustrating.
      Energy - I sometimes take unexpected naps.  If I sit down in the afternoon, I sometimes fall asleep quickly and unexpectedly.  It's also hard to get myself out of bed in the morning... harder than it used to be, any way.
      Temperature - I am still cold all of the time with the exception of when I exercise, in which case, I immediately start to overheat and can not cool myself down.
   
Other than checking blood work and adjusting medication, I don't have anything to do for 2 more months.  Then I have another follow up with my Endo, followed by a neck ultrasound to check the residual tissue.  (This happens 6 months after surgery)  I won't have another Whole Body Scan until the 1 year mark from my first scan... so next Sep/Oct time frame.

That's it for now, just draw blood, take meds, and wait.  See?  Not much to tell, even though I know that my "journey" is far from over.

Part 2 of Isolation: Isolation and Leprosy

Sorry for the delay in finishing the story, but I needed to finish isolation... so my story was actually finished to be able to share it!

   I could be brief and say, "I came home on Friday."  But brief is not my style... right?  Here's the long complicated story.

   So, my husband was coming to the hospital to get me.  He was supposed to have an interview at work at 10am and a conference call at 12:30.  He planned to come get me at 12, after his interview, and take his call from the car.  On Thursday afternoon, when I was starting my treatment, as he was leaving the hospital, he was stopped by the head of the Radiation Safety Team.  This gentleman asked if he was going to be the one to pick me up on Friday and told him that I would be ready and done by 9am, 9:30 at the latest.  My husband told him that he would try to move around some of his things at work so that he could pick me up earlier than we had planned.  That same man then came into the room and told me the same thing.  I assured him that my husband was going to to do his best to be there early but that it wasn't guaranteed, and that I would let him know first thing in the morning.  Well, my husband moved things around but had a very tight schedule for picking me up.  He arrived at the hospital by 8:30am.  We then waited for the Radiation Safety Officer to come and release me to go home... we waited and waited.  At 9am, I called my nurse to ask if they could call for him because my husband was waiting and on a tight schedule.  It was hard for them to hear me on the intercom, since it was in a plastic bag, the nurse answered with, "there are special people for that..."  I know, that's why I asked for those special people to come to my room.  I then waited again.  Still no sign of him, so I called again at 9:30, we needed to leave right then for my husband to make his 11am interview (that he had moved from 10:00am).  I asked them to please contact the Radiation Safety Team so that I could be released.  I explained that my husband had been waiting for an hour to take me home because we had both been promised I would be released between 9 and 9:30, and that he had an interview to get to.  The nurse asked if my husband could go home and come back after I was released and I said, "No.  It takes him 1.5 hours to get here, he can't leave and come back and we need to leave right now for him to make his appointment."  She sounded sympathetic to our situation and I was hopeful we would see "movement" but no such luck.  By 10am, I got a call from my nurse who was just "checking in" and I again said that we hadn't seen anyone yet that morning and that my husband had now been at the hospital 2 hours.  She said, "Oh, I will call the Radiation Safety Team and see if they can send someone."  Um... what were you doing 1.5 hours ago when I asked you to do that very thing?  About the time I had been called, my husband stopped by their desk and asked if they had heard from that guy yet.  They called him while he was standing there.  Within about 15 minutes, the Radiation Safety Officer arrived to take my reading and said, "I didn't come sooner because you said your husband couldn't be here until later."  I reminded him that he told me we'd be done earlier and that I told him that my husband was going to move things around so we could leave earlier.  He sounded apologetic, but also was putting the blame back on us for saying that my husband couldn't be here that early.  No mention of being called by the nurses earlier... I don't think they even tried to contact him.  He took my reading and said he hadn't seen numbers that low in a long time (3 something, I was at 13 the afternoon before).  He said he would let my nurse know to start my discharge process and that I should change my clothes and get packed up, ready to go.  I changed quickly, expecting to leave quickly.  My husband contacted people trying to change things around, again... since it was now 10:30 and there was no way to get to where he needed to be by 11am.  By 11:45, I hadn't seen my nurse yet, so I called down to the desk to ask her if I was being discharged and reminded her that we were in a big hurry.  She said she was working on it.  She came down to my room at 10:55 and said that there was a problem and that the discharge orders from the doctor weren't in the computer and that they had called down for them to be entered again and were just waiting for that.  Just after 11, I got a call from a different person stating that she was my "Floor Case Manager" and that she had a few questions for me... she began asking me tons of quesitons, all of which I had answered during my admission process.  She ended with, "Is your husband coming to pick you up today?"  I told her that he had been there for 2.5 hours and that he was now very late for some work interviews and meetings that he had that day and that I had been cleared to leave 30 minutes prior and hadn't seen my nurse with the papers yet.  Just as I said that, my nurse showed up with the papers for me to sign, so I got off the phone with that lady and ran over to sign those papers.  We left the parking garage at 11:30, after my husband had been there for 3 hours waiting for me and had messed up his entire work day.  The whole thing was very stressful!  He had to drive me to his work.  I had to sit in the backseat of the van so that he and I were at the greatest distance apart possible for the long drive.  We got to his office and I waited in the car for about 45 minutes while did work stuff and wrapped up the majority of his work day.  He got in the car and asked what I felt like for lunch... I said, "I've been sitting here thinking that maybe Fuddruckers would be a good idea and that I could get a cheese burger and a milk shake there.  He replied, "Then it's a good thing I already called in an order for a bacon cheeseburger, fries, and chocolate milkshake."  It's crazy how well that guy knows me!!  We got the food and ate at a park, away from people and animals.  We then ran 2 quick errands while I stayed in the car.  We finally got home around 3pm.   I got out of the car and my 8 year old saw me and came running to give me a hug, I said, sharply, "Stop! Don't touch me."  She said, "Oh, I forgot" and ran and hugged my husband.  I then went right up to my room and got ready for being isolated from the family.
   My mom texted me from downstairs to tell me that my 10 year old had her school pictures to show me, I texted back and said that she could come up to show me.  I opened my door and had some tape across the floor of where they could sit to talk to me.  I sat back 6 ft. to protect her and we both sat down on the carpet.  She then burst into tears because she wasn't able to hug me.  I yelled for my mom, who came up and I said, "You need to hug her, she needs a hug!!"  It broke my heart!  The next few days made it clear that these restrictions were going to be very hard on everyone, even though they could talk to me.  They were hard days.  I was treated like a leper.  They were all afraid of me and I got yelled at if I came out of the room, even if I was wearing gloves, keeping my distance, and taking other precautions.  So, there you have it, being radioactive is basically the same as having leprosy.
   On Tuesday, I had my whole body scan.  Our 1 hour 15 minute drive into the hospital in DC ended up being a 3 hour drive into DC.  It was terrible, I wanted to cry.  I was 30 minutes late for my appointment and my stress level was out of control.  I got there and had my long scan: 30 minutes, followed by a 5 minute break, and then a 20 minute scan... followed by a 45 minute break.  I then had another 20 minute scan.  The doctor reviewed my scan with me and told me that everything looked good, the radioactive iodine was in all the right spots and looked like it was doing it's job.  She then told me that I met the minimum number of days for isolation and that as long as I still took some precautions, I could interact with adults and give my kids a quick hug.  She said I should wait another week before I interacted with pregnant women and children under the age of 2, though, and not let my kids cuddle with me for too long.  I thanked her and we then left to go home.  With my new found freedom, we went to Costco, I have never been so excited to go to Costco!  That afternoon, I went up to the school, as the girls were getting dismissed and hugged them as they came out of the door to the school... there was never a sweeter hug than those first 2 with my little girls!  I hugged my boys as they walked in after getting home and they were visibly relieved to be able to come in contact with me again.
    Wednesday morning, my mom and I went to scripture study class, then to Costco, then Target, then out to lunch to celebrate my birthday (early) and then on to Giant.  By the time I got home, I was absolutely exhausted.  I sat down on my bed and felt my entire body collapse beneath me.  I guess I forgot that I was killing off tissue inside of my and that takes a toll on the body.
   This morning, I woke up to now being 41 years old.  Yep, today is my birthday.  It was crazy to reflect on the changes that had happened in my life in the last year, especially the journey that I have been on in the last 5 months.  I am officially done with restrictions with my immediate family household interactions... which really is a great birthday present.  Unfortunately, I had to say good-bye to my mom today.  She has been a great help while she was here and it was comforting knowing that she was here to take care of the family when I couldn't.  Overall, I feel good, I feel supported, and I feel blessed.  It has been quite the journey!

LID, RAI, The hospital and isolation...

I don't even remember where I left off.  It's been a crazy past few weeks.  3 weeks ago, I started my Low Iodine Diet (LID).  There are basic restrictions but it is far deeper than the basics.  Basics: No dairy, No egg yolks, No sea products, No soy proteins, No Iodized salt, no commercially baked breads.  Seems simple enough, but here is the issue, there are things to know.  Carageen(sp?) is a sea product used to thicken things, it's in a lot of food, whey is used to increase protein in a lot of foods, and it is a dairy product.  The reason for the bread is that there are dough conditioners that have iodine, if it doesn't have those, it might be okay... as long as there is no soy, dairy, eggs, or salt.  Salt is okay, as long as it isn't iodized, the only way to know this is to contact the company and ask.  The nice thing is that I found a Facebook group that helps you prepare for LID and RAI.  They also have a website that allows you to search for foods and see if they are safe.  They have contacted all of those companies to find out who uses iodized salt and who doesn't.  LID Life Community has been a huge blessing.
   Last week, I drove 1.5-2 hours (each way) to DC.  I did this 4 times last week and 3 times this week (one of them staying overnight this week, so I was IN DC for 4 days this week, too.  My husband came with me most of the time and I had a couple of friends that also joined me.  I had others offer to come with me at various times, as well.  I felt very supported.  Last week, I got blood work (3 days), 2 shots, a low dose radiation pill, and a 2.5 hour body scan.  This week, I got blood work (1 time), 2 shots, and my treatment strength dose of Radioactive Iodine (RAI) which required me to spend the night in an isolation room in the hospital.  It was all very crazy.  Every flat surface was covered with blue hospital paper sheets.  Every door knob and handle (sink, toilet) were covered with latex gloves, the remote and phone were both in plastic bags, and the light switches were covered with blue tape.  It was funny.  My meals were brought in and put on a table near the door and then I would go get them after they shut the door.  I was given 4 towels, 4 washcloths, and 5 hospital gowns.  I was to put on a hospital gown and stash all of my other clothes in the closet and not touch it again until I got dressed to leave.  I was then instructed to shower at least 3 times while I was there, if not 4.  I was also instructed to suck on sour candies as much as possible after the first 2 hours.  There is some debate out there as to whether or not this is helpful or harmful.  My doctors believe it to be helpful (obviously) and so I did it... sort of.  I brought a mild sour candy and did not do it constantly.  This was to keep me salivating at a normal amount, but not excessively.  I felt like this was a good compromise.  I was also instructed to drink and drink and drink.  I did this.  I was as diligent as I could have been with this... but still didn't drink nearly as much as they wanted me to, but since the goal was to flush my system and I was using the restroom every 30-60 minutes, I think I was fine.  I had over a gallon of liquids.
   Taking the pill:  First, my nurse brought me an anti-nausea pill.  Then she left and I had to sign forms stating that I knew what I was doing.  There were 3 people who came in to my room before taking the pill and to watch the administration of the pill... the Nuclear Medicine doctor, the head of the radiation safety team, and they guy that came to give me the pill - he was some kind of specialty pharmacist or something, but he told me that he dealt with the radiation and radioactive substances all day.  He brought in a cart with a metal box.  The pill was in that box.  After all of the forms were signed, I was given the pill in a small portion cup.  I took it and the guy left, my doctor left, and the radiation safety specialist told me to lay back and that he was going to be just outside the door.  About 15 minutes later he came in and gave me a reading with the Gieger Counter and then he had me stand up and move towards the door.  He gave me the end of a tape measure (covered with a latex glove, for safety) and then he walked back 3 feet.  He took a reading there... 13 something.  I then stood at the door talking to an Endocrinologist for about 3 minutes or so, we stayed about 4 feet apart.  I then closed my door and didn't hear from anyone for about 2 hours when my dinner came.
   I had a fairly uneventful night, as far as my body goes.  No nausea, no diarrhea (which I was told was very common), and really nothing else.  I did start to smell a weird chemical smell as the radiation started to settle in my nasal cavity.  I had to pee a lot... a lot... which was good.  I couldn't sleep very well, but I was tired and fell asleep about 7:30 and woke up about 9.  At 9:30, I flushed my toilet and it never stopped flushing.  It was a loud, powerful, industrial toilet, so having it run nonstop for the next 30 minutes was quite an issue.  It was spitting water out the back pipes, so my whole bathroom floor became soaked.  When it first happened. I called my nurse and she couldn't hear what I was saying very well with the plastic over the microphone.  I kept repeating, "My toilet is going crazy.  It's my toilet!  It's going crazy!"  When she came into my room and saw what was happening, she said, "O-M-G!  I have never seen anything like that!  Oh, boy, who do we even call to fix it?"  She came back about 5 minutes later and said, "I've called maintenance."  At 10pm, the water tapered off and it just stopped running.  At 10:10, I got up enough courage to go in and flush and see if it did it again.  It flushed for an extended time, but did stop, like a normal flush.  At 10:15, 2 guys showed up from the radiation safety team.  They went in to assess the situation and determined that the glove that was on the handle had gotten lodged between the flusher and the toilet and was, essentially, holding the handle down.  I am not entirely certain that was the case, because I did jiggle the handle and there was no change.  However, once they removed the glove, the toilet was fine.  They then pulled up all of the protective floor coverings and put down new ones.  It was an adventure, for sure.  They left at 11, I took my shower and I finally fell asleep again at about 12.  I then woke up at 1, 2, 3:15, 4, 5, and 6.  Every time I woke up, I drank something, ate one candy, and went to the bathroom.  I was pretty tired in the morning, but was glad that I had slept some.  I'm going to stop this post here and continue with going home in the next one.

Kicking Cancer's Trash... I might use other strong language at the end of this post... like the word, "butt."

  I have been wanting to update for a few days, but I just haven't had the time, nor the energy.  Technically speaking, I don't have either of those today, either, but I didn't want this to go much longer.

   Medical bills are flowing in by the handfuls.  Remember those days when you got 1 bill for all the stuff that happened at the hospital?  Yah, those days are over.  The surgeon wanted money, the anesthesiologist wants money, and the hospital wants money... 3 separate bills, all 3 for the same thing - my surgery.  Then there is the follow up visit with the surgeon, the follow up with the endocrinologist, and the copay for getting my blood work done 1 month after surgery.  Yes, there are lots, but seeing what the bill was supposed to be and what I actually pay is still making me overwhelmingly grateful for insurance... and my husband's job that gives us the money to  pay for all of it the stuff that's our responsibility.

  I have been 1.5 weeks into my low-iodine diet (LID, as it is referred to by those on it, online).  Getting ready for it for stressful - learning what I can and can't eat, making preparations for myself ahead of time, trying to plan out a menu for everyone else.  While I was planning for the diet, I followed my doctor's order for it, which they literally said, "follow it as it is written on thyca.org 's website."  But after I had made some preparations and meals ahead of time, I started to find a lot of confusing things that added different/additional foods to avoid, some of which I had put in my "make ahead" meals.  I decided to not stress over it because I had followed my doctor's orders and they seem to know what they are doing.  After I started the diet, while I was researching a few things online,  I kept hearing about a Facebook group that helps people navigate the diet.  I decided to look into and found them to be a wonderful resource, with lots of support... not only for LID, but for my upcoming Radioactive Iodine treatment (RAI).  LID Life Community offers the Facebook group for social support and immediate answers, but they also have a website dedicated to LID that allows you to search for a product and find out if it is safe or not.  They have contacted manufacturers to find out of they use non-iodized salt and have a whole long list of safe manufacturers.  It opened up my world, a bit and made it so I can relax on this diet and not feel so starved.  Their slogan/motto is "No one fights alone!"  This process has been very isolating for me (and I'm not even in ACTUAL isolation yet, that is coming) and to find a support community that wants to help me navigate all of this has been huge!  There are still some things that I find confusing - for example, their philosophy follows one bit of research that shows that you shouldn't eat sour candies during the first 24 hours after RAI, but most doctors advise you to do so... mine included.  RAI can affect the salivary gland, so the doctors advise you to make your mouth water as to increase saliva production.  When I asked my endo about following the new research or my other doctor, she advised me to follow the nuclear medicine doctor's advice, as he has loads of research to back it up and has a protocol that he has developed to give me the best possible outcome, based on personal research and years of experience.  Yet, I have read the actual report from the 24 hour thing and see that overwhelmingly, patients that did that had trouble later, but all agree that it is super important to cause salivation AFTER the 24 hours... so, I have a plan to find the middle ground and try to follow both.  How can one both eat sour candies and not eat them, at the same time?  I have a milder candy for the first 24 hours and a more extreme candy for after the 24 hours.  The milder candy should cause me to salivate at more regular rate/amount and the more sour ones will cause me to salivate in an extreme manner afterwards.  This should both protect me from not salivating and protect me from salivating too much (in the first 24 hours.)  :)  Regardless, I am thankful for good doctors and good support groups!

  Monday starts my RAI process.  I will go in and get my blood drawn prior to anything, then I will get shot #1.  Tuesday, I go back for shot #2.  Wednesday, I do more blood work and then I get a pill with a lower dose of RAI that is used for scans and will not make me radioactive or dangerous to others.  Thursday, I go back, give them blood again, and then stay for 3-4 hours of scanning.  They will scan my whole body, and get very clear images of my neck.  These scans show them how much thyroid tissue is left in my neck, and if they thyroid cancer has spread any where else.  I should have ONLY a tiny bit of tissue in my neck that lights up, anything more than that or anywhere else in my body, and we have a problem...   A doctor than reviews these scans and uses what is found, plus my height/weight to calculate the specific dosage I need of the RAI.  They want to know what the highest dose the they can give me with the least amount of side affects, which is the lowest dose possible to still get the job done.  Does that make sense?  Probably not to anyone but me, but it does in my brain and that's all that matters.

  I then get the weekend off, still have to do the LID but don't have to worry about anything else.  On Tuesday, I go back and get shot #3.  On Wednesday, I go back and get shot #4.  On Thursday, I go in and get my RAI pill and get admitted into an isolation room in the hospital.  I can't take anything with me except for a few magazines that I can throw out when I'm done, some bottles of gatorade, my candies, and my cell phone in a plastic bag.  It needs to stay in there so it doesn't get contaminated.  Its all very funny... or scary... depending on how you look at it.  I will stay about 24 hours in the hospital or until my radiation levels are equal to the environment, whichever is longer, I think.  Then, I will go home, sitting as far away from my husband as possible.  I will then be in isolation for the remainder of the 7 days (the next Thursday), at which point, I will be safe to resume normal activities.  I do have to go back to the hospital for one more scan on the Tuesday before my isolation is up, but that should be fine.  Some internet resources state 10-14 days is better/safer range for being more normal, so I will come out of isolation at the 7 days, but still be away from my hugging my kids for the full 10 days, and not letting them sit on my lap for the 14 days.  I will then consider myself fully safe.

  Another fun fact, I have gained 15 lbs since surgery, 20 lbs since finding out I had cancer.  The first 5 lbs was stress eating.  As I said, this has been an isolating process.  I have found myself very overwhelmed and feeling completely alone, even with the amazing support I have.  It is crazy to go through this and is overwhelming at times.  I find myself getting teary-eyed if I dwell too much on it.  Luckily, my medication wasn't at the right dose (we are hoping it is better now), so I have been too tired to be able to put too much energy into feeling sorry for myself.

  Also, I started taking Taekwondo with all of the kids, so that I can have a regular exercise program for myself.  Making myself go when I feel so tired and my body is so achy has been really rough, but I am just getting ready to kick cancer's butt.  (I can't believe I just used that word, I never say anything that strong!  But saying "bum" just didn't have the right affect.)
 

Nuclear Medicine... it's no joking matter.

Nope, it's not.  They are very serious there.  I guess they have to be when dealing with turning people radioactive...  the doctor did not like my joke about making my kids do their own laundry for longer than necessary... she corrected me, twice.  Oh, well.

We checked in and filled out forms.  I met "The Scheduler" face to face.  She was very nice.  My husband reminded me later that her job is an impossible one with all that she really does have to keep track of and the logistical dance she has to do with each patient.  She took us back to an exam room and we watched an informational video.  We then met with the doctor, who pretty much went over everything that was in the video and in the notebook that they had sent me, and then asked if we had questions.  I went over stuff that wasn't in the book, like what to do with my CPAP machine, etc.

 Sounds like iodine is water soluble and the best thing to do after the first day 24 hours (or so) is keep myself isolated, but if I use something, it can just be washed off normally, although, it should be washed separately (i.e. laundry) and that I should take extra precautions when I reasonably can (using paper plates and plastic utensils).  These precautions should be practiced for the first week, after that, I am safe to be around.

You know, I say that they are very serious there, but they did end their introductory video about my radiation therapy by saying that although I would be radioactive, it wouldn't give me special powers and that I wouldn't be able to do anything fancy like turn the lights on and off from across the room... How disappointing!  I was hoping to get super hero powers to go with the awesome scar I have on my neck.  Then, I'd really have a great story to tell...

Let me tell you again how this works...

The scheduler was not my favorite person to work with.  Once we finally were able to talk on the phone, she explained all of the visits we needed to schedule (consultation, injections, blood work, scan, the procedure, and then the post scan) and then said, "Let's schedule your consultation, the earliest date for that is..."  After hearing the date, I was still in a little shock over the multiple appointments, my doctor had led me to believe it was a total of 3 appointments, the scan prior, the procedure, and the post scan.  I stopped the scheduler and asked, "Can we work backwards a little, I have a specific week that I need the actual procedure done, I would like to schedule everything else around that."  She seemed really annoyed that I would mess with their precious system... "Let me tell you AGAIN how this works, you come in for a consultation, then you come in for the injections..."  She went on and explained everything again, I listened, as patiently as possible, and calmly replied, "That all sounds great.  I need to do the ACTUAL treatment the first week of October.  It's the only week I can do it, so all of the other stuff will need to be before that, when do we need to schedule those?" She took a deep breath and I heard her grunt (almost growl) into the phone.  "I'm going to put you on hold while I see IF that works with our protocol."   She put me on hold, I thought, "Um... it does.  I just need you to put it on your calendar..."  She came back several minutes later.
   "Let's start by scheduling your consultation.  I have availability starting..."  Once I scheduled that, she told me what days I had to come in for everything else to hit my target date, I only got to pick the times.  I chose early in the day so that my husband could possibly come with me without interrupting his work day, however, some of them were 4 hour appointments.

But I'm scheduled.

This coming Monday, I have my consultation where we will get our questions answered.

Then, in 2 weeks, I start a low iodine diet.  No iodized salt (so basically no salt), no dairy (including egg yolks), no sea products, and no soy beans or similar beans.  Doesn't sound so bad, right?  Until you realize that it means NO pre-packaged foods because they all have salt in them, many have some form of dairy in them, and some are thickened with a seaweed product or made higher protein with soy products.  NONE of my protein shakes or bars are okay because they are soy or whey based.  I will have to make my own bread and buy almond or coconut milk that doesn't have any additives to put on whole grain cereal that has no salt.  Then, I will eat that and veggies.  That's it.

2 weeks after that, I go in on a Monday to do blood work and get my first injection.  Then I go back the next day to get another injection, and then back again on Wednesday to get my blood drawn and take a very low dose of the radioactive iodine.  On Thursday, I go back for 4 hours to get multiple scans, another blood draw, to review the scans and calculate the dosage of my big radiation.

On Tuesday the next week, I go in for another injection, and possibly another blood test.  On Wednesday, I go back for my final injection.  On Thursday, I go in to be admitted to the hospital, take the high dose of radioactive iodine and then remain in the hospital in total isolation until I don't register dangerous levels of radiation on their Geiger counter (not kidding, that's when they let me go home...).  This usually takes about 24 hours from when I take the pill.  Then, I will go home, spend the next few days in total isolation at home, then go back to the hospital for a follow up scan, and when I get home, I will spend the few days after that no closer than 6 ft. away from my family.  It is going to be an adventure, for sure!

    I am super lucky that my mom is coming to take care of my family.  I will not be allowed to touch anyone else's food or laundry, and since I can't be closer than 6ft. I can't ride in the car with them, so she is coming to take care of them.  Once that week is over, we will all be very happy to start to get back to normal.  I am hoping to spend my birthday (exactly 1 week after my treatment) with my family and not in total isolation, even if I am 6ft away from everyone.

  Shortly after all of this is over, and well after the time has passed when I am radioactive, I will be getting in the car with my family to drive to Orlando, Florida.  It will be a much needed vacation after not being able to spend the time with them and not being able to hug them and after putting toxic radiation into my body.

For anyone that lost count, that means I get to drive to the hospital 9 times in the next 6 weeks.  The hospital is 1hr. 15 min. from my house each way (if there is minimum traffic) so basically, we are talking a 3 hour commitment, minimum, each time... The 4 hour day is going to quite the day!

Fun times, fun times...

Fun to say, not to do...

I am learning that there are a lot of things that more easily said than done... or in some cases, more fun to say than to have.

   Take, for instance, the word, "metastasize."  That is a super fun word to say, in all of it's forms... metastasis, metastases, metastasized... so fun to say.  Oh, go ahead, you know you are dying to say it aloud, just do it, no one is listening (even if they are, they don't care).  However, saying it might be fun, but having your cancer do it is not as fun... in fact, it's scary.  Quite scary.
   At my follow up visit with the surgeon, she told us that she took out 6 lymph nodes.  This was more than she was planning, but she didn't say how many more.  The pathology report came back from my thyroid showing... cancer (no surprise) and that 2 of my 6 lymph nodes also had cancer (Surprise! Metastasized! Hmmm... I tried to make it sound fun... Nope, still scary.)  I would definitely need radioactive iodine treatment.  This was something I was truly hoping to avoid, even though I have been planning on it all along.  At my follow up with the endocrinologist, she confirmed that I would need the treatment.  Both doctors gave me great advice on what to look for in places to get it done, however, neither gave me an exact name or phone number or instructions.  They also both had suggested getting questions answered about specific insurance coverage before proceeding.  I felt like this was good advice.  I had my questions set.  I had reviewed my calendar with my endocrinologist during my visit with her to determine the best time for me, then, I had spoken to my mom about it and reviewed her availability within the correct time period... my window of opportunity was quite small... 1 week, to be exact.  I had an exact week that my treatment had to occur.  We were now only about 6 weeks out from that particular week and I felt like I needed to get it scheduled as soon as possible so that we could get my mom's plane ticket purchased.  I had my date set.  I just needed to know exactly who to call.
 
   Researching a nuclear medicine doctor to administer the radioactive iodine was overwhelming.  Add to that a sudden fluctuation in mood levels from my thyroid being gone.  Add to that PMS.  I could not function.  I burst into tears and felt like there had to be someone out there that could help me... there wasn't.  I needed to make a decision and make a phone call.  After a full afternoon of crying, I calmed down enough to call the next morning.  We decided on the same hospital where I had my surgery, mostly because they came recommended by my endocrinologist as knowing what they were doing, and their website seemed to really show that.  They also promised someone to walk us through the process, step by step, which with feeling this overwhelmed, was something I NEEDED.  Right now, I just wanted to walk away, not deal with it.  The website promised help... I bought into it, hook - line - and sinker.

   Scheduling radioactive iodine treatment is another thing that is easier said than done.

     I called the number on the website, I nice woman answered who took careful notes on on what I needed (I could hear her typing into the computer), and asked all sorts of questions.  She finally said, "Okay, Honey, I am going to transfer you to the main number for the hospital, from there, you ask for Nuclear Medicine.  Here's the main number in case you get disconnected... xxx-xxx-xxxx.  Have a great day, and good luck!"  The phone rang for the hospital, it went to some hold music for about a minute while I waited for an operator, who then transferred me to Nuclear Medicine.  Nuclear Medicine has a menu, I pushed 2 for scheduling.  That got me to another woman in the nuclear medicine scheduling department, to whom I explained what I needed... she transferred me to the voicemail of... THE SCHEDULER.
      Oh, the scheduler.  She has 1 job to do - schedule people for this particular treatment.  Literally.  When I said what I needed, they transferred me to her desk because she is the only one that does this at the hospital.  I had to leave a message because at 9:30AM, when I called, she wasn't at her desk.           At 10am, she called me back and asked, "Do you have the order from your doctor?"  I told her I would check through the paperwork I had and see if she had given me one because she had given me orders for some blood work and I wasn't sure if the order was with that or not... it wasn't.  "I can have her office send it over to you when we get off the phone.  Uh -"  I was interrupted when I took this breath.  "I can't schedule you without the order from your doctor.  Have them fax that, along with your patient demographics sheet, and a copy of your insurance card - front and back.  Here is my fax number...  xxx-xxx-xxxx.  I will call you once I have received all of that information.  Good-bye."  Um, okay... what about finding out if my date was even a possibility so we could buy plane tickets, and checking my insurance and all of the other questions I had?  No?  Nothing?  Okay.
     I called my doctor's office and pushed the buttons on the menu - make an appointment? No?  Okay, then push this other button to go to the nurse's line to leave a message and we will get back to you as soon as we can.  I left a message, explaining, in detail, what I needed and asked them to call me as soon as they had done it or if they had questions, and then I hung up.  I then logged on to the electronic chart service for the doctor and emailed her office requesting the information and explained that I had also called and left a message.  I then waited 2 hours, but still no call from either office, nor an email reply.  So, I called the endo's office again.  This time I pushed the menu to make an appointment.  I was sent to a real person who took careful notes of what I needed and said, "Okay, I will send this message over to them right now so they can get that information sent out for you."  Okay... so the schedulers have to send a message to the office people to send the information.  Great... What could go wrong?  By 4pm, I still hadn't heard from either office.  I was having a hard time believing that the endo's office hadn't sent that information over by then so just after 4, I called the hospital.  Wait... how do I get in contact with the scheduler?  Okay, hospital main number, ask for nuclear medicine, push 2 for scheduling, then, this time, I asked for her by name... "Um, I can transfer you to her voicemail, but she's gone home for the day."  The voice sounded a mix of "matter-of-fact", disbelief, and annoyance, that I would call at this particular time... you know, within NORMAL business hours.  Okay, transfer me.  I will leave a message, it isn't like I've been waiting ALL day for her to call me!  Tears started to well up in my eyes and the more I spoke the more emotional I got.  My message once again stated who I was, what I needed to schedule, and that I had a very specific date I needed to schedule it for.  I then said that I was running out of time to get plane tickets (fare sale ended the next day) and that my mom wasn't going to be available the whole next day.  I had appointments scheduled both of the next 2 days, right in the middle of the day and would not have much time to talk to her.  I asked her to please call me before 10am the next day.  UGH!
    That night, I got an email message back from my doctor saying the information would all be faxed over.  The next morning she emailed me again saying it had all been sent.  At 10am, I was in the garage, walking out the door to an appointment when my son came running out the door with the phone... it was the scheduler.  I was very short with her because I had asked her to call before 10am, not at 10am.  "I don't really have time to talk, I am on my way out the door to an appointment."  She was annoyed with me.  "I know.   I just wanted you to know that I never did receive anything from your doctor yet, so I can't schedule you."  Now, I was really annoyed.  "Well, my doctor emailed me this morning confirming that she sent everything yesterday afternoon.  This is the fax number I gave them...  xxx..."  She was very short with me.  "That's my fax number.  I don't know why I didn't get it, you can call them and ask them to send it again."   At this point, I wanted to scream.  No, I can't call them and ask them again...  there is no one to ask.  No one.  When I call, I talk to people who give messages to the people, but I can't actually talk to anyone in the office.  Then there is the fact that you are purposely calling me as I am walking out the door.  Seriously.  After hanging up with her, I ran out the door and called the other office from my car.  I gave them all of the same information again, and this time expressed that they had not received the information, even though the doctor had it had been sent and that we were waiting for it.  Just before getting home from my appointment, I got a call from the scheduler, she finally had all the information she needed.  This time, she would need to wait for me to call her back... and you will need to wait until the next post to find out what happens next.

A lot of catching up to do...

In the days leading up to surgery, I had a lot of feelings that I hadn't really let myself have before.  I was starting to feel apprehensive about the future, I was thinking about the "what ifs."  I planned things out... to take care of some of those "what ifs."  I even recorded myself telling my husband and kids that I loved them, just in case my voice was damaged and I couldn't ever say it again.  Maybe it was a little silly, but I knew that if my voice was damaged, I'd be happy that I had it.  I also knew that if something went terribly wrong and I never woke up from surgery, that perhaps they would find it on my phone and have one last message from me.  Again, not a likely scenario, but I felt like it was good to record the message, just in case.  I dealt with the feelings, as they came, pretty much hid them from everyone.  It helped that I had a lot of real life happening to hide behind.  On top of coming home from vacation and going to an escape room for the first time, we had 2 kids with ear infections that needed attention and one of those lost a toe nail.  After caring for them all weekend, I took my oldest to the DMV to get his learner's permit and then took both boys to get hair cuts, then my oldest to 2 hours of Taekwondo.  It was sort of a crazy few days taking care of others and running around.  It helped to not think about myself, though... it always does.

On August 1, we woke up early and left to drive to DC.  Traffic was almost non-existent so we made it to the hospital an almost hour early!!  We decided to go ahead and check in, thinking maybe they would just have us wait a while in the waiting room, but they didn't.  We checked in quickly and I got taken back to my pre-op waiting area.  They had me change into my gown and got me settled on a bed.  They asked me tons of questions and I was then told that I would have to answer all of those same questions for just about everyone else that came through there and that I should expect to see: the anesthesiologist, an OR nurse, my surgeon's nurse, and (eventually) surgeon.  They did say my surgeon was in the clinic that morning and wouldn't be able to come in until right before surgery.  I did, eventually, see all of those people (and then some!).  When my surgeon came in, she was happy and seemed glad to be there... which is always very comforting.  She commented that it had been awhile she had last seen me and asked if anything had changed since we last met.  I got a very serious look on my face, took a deep breath, and said, "Yes, the cancer has spread throughout my body and is masquerading as fat and excess skin here and here (pointing to my flabby arms and stomach).  You have to remove it all."  She looked shocked and then just started laughing.  I think she was happy to see that I was in good spirits.  Within minutes, a huge crowd had gathered at my pre-op area and began introducing themselves as my surgical team.  I was wheeled back to the OR, where I was introduced to a few more people and as I came in and met them I said, "so many to help with my surgery, and not a single one of you is a plastic surgeon?  That is so disappointing."  They all laughed, I got settled on the operating table and that is the last thing I remember.  They didn't have me count backwards from 100, none of that.  I don't even remember them saying they were putting me under.  I just remember voices next, my doctor and my husband talking about the surgery, and then drifting back to sleep, off and on, hearing the voices around me in the recovery room.  Eventually, I heard someone talking about finding me a room for the night.  I opened my eyes and looked around.  The nurse asked me how my throat felt.  Someone came in to draw blood.    I was told I needed to drink some pink liquid (liquid tums) then I told them I needed anti-nausea medicine.  They gave me something in my IV.  My husband came in and said, "It's good to see you awake, I've been in to see you every hour or so, but you've been asleep a long time... it's 7pm."  I smiled at him and closed my eyes, feeling like I just wanted to go back to sleep again... It took quite awhile to find me a room.  By the time I got settled and sent my husband home and finally asked for pain meds for my throat, it was late, like 9pm.  I don't know when I had pain meds last.  It seemed to take forever for them to get them to me.  They brought me these HUGE pills to swallow with my sore throat.  ??  Why?  Who knows.  Liquids, people, liquids... or my IV...  either would have been fine.  I hadn't had anything to eat since the night before (24 hours+ since solids) and was starting to feel the effects of that.  I asked for a drink of water and maybe some juice.  The juice burned in my throat.  I started to cry.  The nurse brought me a lozenge just so I could numb my throat enough to take my pills.  It helped a lot, should be standard issue.  Took me a few hours to make it through a little bit of juice and my cup of water.  My nurse then brought me a bigger cup of water and an even bigger cup of ice!  Yay!  I slept off and on through the night, getting woken up by people needing to take vital signs, draw blood, and give shots (PS - still had an IV in, would have been nice to get those in there...)  Before 7am, my entire surgical team, minus the doctor, showed up in my room.  I know it was them because they announced it, "It's just us, your entire surgical team!"  They said I could go home when I was ready and told me how to care for my incision.  That was it from them, no update on how the surgery went.  Nothing.  I'm sure if I had asked more questions, they would have answered, but I was still sort of out of it.  I could have a conversation, but it took days for the full effects of the anesthesia to wear off where I trusted myself to be able to fully concentrate. Long story short... I left the hospital that day just after lunch time.  I was so happy to be home!  

I am healing nicely.  It has been a week and 3 days since surgery and I don't have much information.  I will know more after my follow up visits next week with both Dr. R and Dr. V.  I don't know yet if the medication is at the right dose and I just had one day (on Tuesday, one week after surgery) where I had tremors in my hands and wasn't sure if it was a blood sugar issue or synthroid issue.  I ate lunch and it went away, so for now, it looks like it was blood sugar.  Below is a picture of my incision.  The first is the morning after surgery, the 2nd is the day after that (about a week ago), and the third is today.  The human body amazes me.

I have had phone calls from long lost friends (okay not lost, just been a while since we got to chat), emails and cards from extended family members, and countless texts and FaceBook messages from family and friends checking in on me.  I am feeling so blessed and well taken care of.  Things really couldn't be going better right now. 

Lots of crying, panic, and an interrupted vacation

On Tuesday afternoon, not 15 minutes before closing time for EVERYTHING, I got a phone call from my surgeon's office.  She said they had received all of my pre-op info from my PCP except for 2 blood tests.  I told her that they had called me back in drew 2 more vials of blood 2 days after my first appointment and that it was probably the missing 2 tests.  She said she would call my PCP in the morning to verify.  The next day, at about 11am, I got a call from her saying she had called and that they did not have that blood work and that I would need to go get it done immediately.  This made me a little sick to my stomach because one of the tests takes 1 week to get back and we were now 6 days from my surgery.  I was sure that they had made a mistake, so I called my PCP and talked to the receptionist who said she didn't have any other blood work for me.  I explained to her that I was away on vacation, that my surgery was now less than a week away and that I needed to know if they were still expecting results from those final 2 blood tests.  I told her that one of them took a full week to process so she should get the results the next day.  She said, "Oh, well, I didn't know you did more blood work and if we aren't going to get the results until tomorrow, then, I wouldn't have that information yet, you will have to call back tomorrow to see if we have them."  I got a little snippy with her at that moment and explained that NO... she would need to verify that the tests were being run now, not wait and see if they were being run, and that she needed to do it quickly because I was out in the middle of nowhere and needed to try to find a lab somewhere and may have to drive the full 3 hours home to do the blood work.  If that was the case, I would need to know so that I could get home and get it done before everything closed at 5pm.  She took my phone number and said, "Well, I will try to get ahold of the doctor."  What does that mean?  Where is he?
  During the next hour and half, I tried calling the local urgent care to see if they could run the blood work for me... just got a busy signal.  Then I tried calling the local hospital, same story, a busy signal!  Where did everyone go?  Who are they all talking to?  I started to cry.  I just couldn't deal with this.  I tried multiple times over the next hour and half to both places (yes, where I was only had 2 places within a 20 min drive).  I still hadn't heard back from the receptionist at this point and so I called back and she said, "Um, we've been completely slammed, I haven't had a chance to ask the doctor about that yet."  This just made me frustrated and a little angry.  You mean to tell me he's right there down the hall and you haven't walked down to ask him?  Interrupt.  This is an emergency.  My surgery may need to be postponed because of this... GO!   I again stressed to her the urgency of the situation and explained that I needed to make arrangements immediately and that I was running out of time.  She told me she would talk to him soon.  I got off the phone with her and, after crying a little more, listened to an earlier voicemail and reviewed an email from the surgeon's office, which included the advice to seek out a specific type of lab.  I got online and found the closest lab of that type and it was 50 minutes away (each way) from where I was.  I made an appointment with them and then got my kids their lunch.  It was nearing time for me to leave for that appt. but I didn't want to go that far away if my doctor really did have my results pending.  I decided to call back - my call went to voicemail... at a doctor's office!  I hung up, without leaving a message, and within 1 minute, got a call from the receptionist.  She had finally talked to the doctor... "he has taken care of everything.  Do you have the fax number of where we can send the results?"  Phew!  Sounds like he contacted the lab, verified they had my tests AND not only that, the results are ready!  Awesome.  I got off the phone, feeling relieved... at least for a little while.  Just as my time came and went to leave for my appointment in the big town 45 min away, I got a call from my doctor, himself.  "There was a problem with the lab work.  The lab didn't run all of the tests, we are still missing one.  I know you are out of town, is there a lab there that you can go to and I will fax the order to it?"  I sighed.  I explained that there was nothing nearby.  He said he would find me a place.  I got off the phone with him, grabbed my car keys, phone, and wallet and left.  I had several minutes to make up on my appointment time with the other place and I just felt like I needed to go and get it done.  My 13 year old son came with me and he slept all the way there, so he didn't notice that I spent a fair amount of time teary-eyed as I drove.  I called my PCP's office from the road and told them that I had found a lab and that I was on my way so not waste their time trying to find me a place.
   We pulled in, ran into the building and I explained that I didn't have an order for the tests in hand, all I had was the PDF of it in an email from the surgeon that morning.  I asked if she had an email address that I could email it to her or some other way that I could print it (even if I just logged on to a computer and printed it.)  The lady looked at me and said, "we're not allowed to do that."  I was now frustrated, on the verge of tears... again... and I just looked at her.  "Um, where can I go to print it?"  She suggested the public library, gave me directions to one that was just down the street, and we left.  They (the lab) were closing now in 35 minutes.  I got a little turned around getting to library, I was in a huge a Ford 150 truck on narrow streets that randomly became one way every so often, and when I got to the library, I found that they didn't have a parking lot, only paid street parking.  I started to cry. A lot.  I couldn't turn the truck around, I couldn't find a place to park, I was running out of time.  Why??  I just wanted to be on vacation with my family with my blood work done.  I finally was able to pull a U-turn, and found a end space that could fit my truck in front of a church just down from the library.  I was out of time so I didn't have time to even try to figure out the meter so I hoped that while I was in the library, they wouldn't check or ticket me.  I ran inside and went to the desk and explained that I was flustered, upset, in a hurry, and that I needed to print something.  The lady behind the desk was very kind and offered me everything I needed.  When I needed to pre-pay for the page I would print, I got out my wallet and only had $10 bill to pay for the 20 cent page.  She was sweet and said, "I will take care of it, don't break your Ten over this."  I really appreciated her help.  I got the page printed and got out of there within the next 5 minutes.  Got out to my truck, no ticket that I could see.  Ran back to the lab and handed her the order.  She looked it over... "Oh, well, we don't do STAT testing.  You would be better off going to the hospital."  I explained that their lab was recommended by my doctor, that I was out of time (they were about to close in 15 minutes), and that I couldn't risk not getting it done that day, I asked her just to send it away and get it done as fast as they could.  3 vials of blood, a Dairy Queen Blizzard each for my son and I, and one long sigh of relief later, and I was back on the road, headed back to vacation.  I won't know until tomorrow if they got any results back from those blood tests.  I am hoping it won't delay my surgery but I am nervous that it might.  All I know is that I have done what I could to get the work done.  I did everything I could with my doctor 2 weeks before my surgery.  I went back in during my vacation after spending an exhausting morning trying to find out what was going on.  I feel a little bit like I was robbed of a full day of that vacation.  It isn't right, but life isn't always fair... the fact that I have cancer is proof of that.  Right?  PS - when I got back to the vacation home, I got a call from my doctor telling me that he had found me a few locations not too far from me, like maybe 30 minutes or so... it was now after 5pm, when did he think I was going to go?  The blood test takes a week to get back, remember?  Seriously, not very happy with them.

Blessing Before the big day

I wanted to share about a special experience that I had a week ago with my family, but it requires some explanation for those that aren't familiar.  I need to explain the Priesthood, as I believe it to be and who has it and what you can do with it.  Although I am familiar and comfortable with the topic, I was struggling with the words to explain it... so I went to the source.  Here is the link to the following paragraph definition:

The priesthood is the eternal power and authority of God. Through the priesthood God created and governs the heavens and the earth. Through this power He redeems and exalts His children, bringing to pass “the immortality and eternal life of man” (Moses 1:39).

Many men in my church hold the Priesthood.  In fact, there are varying degrees of it and you can be ordained as young as 12.  My husband is a Priesthood holder and with that comes the ability to perform certain ordinances in the church.  This past Spring, he was able to baptize our daughter.  He can bless and pass the sacrament.  He can also put his hands on someone's head (with their permission, of course!) and give blessings of comfort, guidance, or healing.   This is what I asked him to do for me before my upcoming surgery.  I couldn't imagine going to into my surgery without getting a blessing first and was grateful to be able to ask my husband to do that for me.  

But the experience doesn't end there...  I actually asked him to do it months ago, when I first found out I needed surgery, but I asked him to wait until it got closer to the date.  This past week, we were on vacation with my entire family, minus 1 nephew who is currently serving a mission.  That means there was a small group of 32 of us in 1 house.  Last Sunday, I asked my dad and brothers and brother-in-laws to assist my husband in giving me that blessing prior to my surgery.

We called everyone together and I had the opportunity to explain a little about my cancer, bare my testimony to the children about how I knew I would be taken care of and that all would be well, and then my dad anointed me consecrated oil and then my husband, my dad, my 2 brothers, and my 2 brother-in-laws surrounded me and put their hands on my head as my husband gave me a blessing.  It was truly a beautiful moment for me.  

The word that I remember most from that blessing is courage.  I am not even sure why it stands out so much to me.  He blessed me that I would heal quickly and other things that you would expect to hear in a blessing of healing, but the word courage echoes in my mind the most.  I hope that I will have the courage I need to face the upcoming days.  

Hugs from strangers...

  After being gone on vacation for a week and a half, and trying to get my house back in order, it was time to get back in to real life.  So, I started in on the many doctor and dentist appointments that we have spanning the next week and half... in total, there are 7 appointments... 2 for my cancer.
  I went to the endo today.  I had another list of questions for her.  She really is awesome.  She patiently listened to my questions and after answering questions about medications and timing of radioactive iodine, I asked her about possibly writing a letter stating that I have cancer, to help me with something that I needed, she told me that she would get me anything I needed, EVER.  I got teary-eyed.  She got up and hugged me.  She really cares about her patients - I can tell.  I like not feeling like a number.  I told her that I am more emotional than usual about it this week than usual because I have been thinking about our trip to Disney in the fall.  I told her that because I don't ever feel worried about the cancer itself, I didn't think it would affect my kids that much, but that they have been showing signs of trying to cope with their worry in different ways.  I am trying to not have this affect their lives, trying to go on vacations as planned, etc. But this week, I have realized that although the cancer and surgery aren't that big of deal, the after-affects are an unknown and will be the hardest for me to deal with, physically.  That I am worried about our Disney trip more than I care to admit.  Also, we are spending money on surgery that is supposed to be for fun while in Florida...  I told her that it was all overwhelming to think about and made me more emotional than I had been.  She told me that it was okay to feel overwhelmed.  She told me that it was okay to be frustrated by the situation and to have emotions about it.  She said that cancer is disruptive.  It's scary.  I felt relieved to hear a doctor tell me that... and not just say that this was a "good cancer" or the kind of cancer that they would choose.  I still feel guilty sometimes that it easier to deal with than what other people have to deal with.  But, I still have cancer, the same as the next cancer patient.  Whether I can joke about it in the moment or cry about it, doesn't matter, it's okay for me to say, "I have cancer."
    She reviewed her notes and said that she never received a final pathology report from the radiologist for my lymph node biopsy.  She would request that ASAP.  She then said that saw that I had met with the surgeon and told me that if she were to choose a surgeon, she would go to one I am going to, or someone else on her team.  I told her I was very impressed and liked the surgeon a lot.  That I felt she was thorough and had a great bedside manner.  We then discussed my pre-op labs and why the surgeon requested what she did.  Dr. V was very helpful and patient wanted to make sure I understood.  She was great... it also made me realize just how thorough my surgeon really is!  On my way out the door, she walked me out to ask the receptionist to contact the radiologist for the final pathology report.  The receptionist realized what I was there for, and after taking a note of what to ask for, said to me, "You are in good hands with Dr. V... she will take care of you."  She then offered to write down a reminder card for next visit, even though I assured her I had it in my phone.  She wrote down her name on the card and walked around the desk to hand it to me.  She said, "If you ever need anything, you call this number (pointing to the card) and ask for me, Marge, they will transfer you to me.  We will take very good care of you."  She then hugged me and handed me the card!  I seriously love these people.  What a warm and caring office!
   It did make me wonder if I were to tell everyone that I have cancer, if I would get hugs other places, too...  the grocery store?  I don't go that many places... just doc appts. and grocery shopping, so that would be about it.  Hmmm... maybe, if I was a more outgoing person, I would try it, just to see.  :)
   I have 2 friends that found out that I had this appointment and another one (not related to my cancer) today, that would take the majority of my day, today.  They are teaming up to bring my family dinner.  I am very grateful for the support that I have from friends, they are amazing!!