Anniversary and introspection

The past 2 months, I have been reflecting on what my life was a year ago.  On the 1 year anniversary of finding my lump on my neck (March 23), I sat here touching my neck and felt my lump... yep, still there.  On the approximate 1 year anniversary of my ultrasound (end of April), I reflected on the many tiny miracles that found my cancer.  On the 1 year anniversary of my biopsy (May 3), I remembered how scared I was.  Here it is May 10 and I am remembering my phone call from the doc with my results, I am remembering (as if it was yesterday, seriously) my conversation with my husband where he wanted to know what was next.  I remember going to pick up my son from taekwondo and having him tell me to park and come in because they were going to do something special for Mother's Day - they had decorated boards and wanted the moms to break them.  It was soooo therapeutic that day, that immediate release of stress, I knew I wanted (possibly even needed) to do taekwondo when I had this all figured out.  I remember my mom calling while we were on our way home asking if I had heard from the doctor.  I tried to calmly tell her that I had cancer, but, honestly, I felt numb, lost, and like it was all a dream.
   Today, I still feel like it has all been a dream.  I have felt so overwhelmingly blessed through the whole thing, that it is hard to feel sorry for myself when I am having a hard day.  There are VERY hard days.  My body hurts.  My joints stiffen and it hurts to walk when I stand up after sitting or laying for a long time.  Moving helps.   I get so low on energy that about once a day, I start to fall asleep with no warning.  Luckily, this has never happened while driving.  I have NO metabolism.  None.  My high dose of levo is supposed to make me hyperthyroid, but I have little to no symptoms, especially not the one that means my metabolism is increased.  Nope.  Not so lucky.  I, instead, continue to gain wait, albeit slowly now.  I have gained back 62 of the 80 lbs. that took me 2 years to lose.  That thought depresses me more than anything else.  Actually, it sort of makes me want to throw up and cry all at once.  I have trouble sleeping, still.  I never feel rested.  My endo feels like that means I need a sleep study, I reminded her that I've had 4 of them.  My CPAP does not help.
    Someday.  That's what I keep telling myself.  Someday, I will be able to lose weight.  Someday, I won't hurt.  Someday, I will have energy.  Someday, I will be able to get a good night sleep.  Someday, I will feel good.  Someday. 
   Today, I am grateful.  Grateful to be alive.  Grateful for doctors.  Grateful for family and friends.  Grateful for my faith, blessings, and miracles.  Grateful for the hope that "someday" will come... eventually.

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.