Tag: thyroidectomy

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Cancer Family & Friends Health losing a parent Mothering

Cancer Surgery- One Year Later

One year ago today, I underwent a thyroidectomy (complete removal of the thyroid) surgery, and a neck dissection to remove almost all of the lymph nodes in my neck, because I had cancer.  (You can read more about the surgery here, After Thyroid Cancer Surgery. I have posted some other pictures at the end of this post, I thought may be helpful to others who are facing a similar surgery.)

A lot has happened during the past year.  At the time it was my biggest challenge.  Cancer is a big deal.  Even thyroid cancer, which most every doctor will say is the “best” cancer to have is a major, life changing event.  I haven’t talked to one thyroid cancer survivor yet, who hasn’t experienced some type of problem, or issue with their recovery.  For me, it was a mistake the endocrinologist’s office made, and I ended up without any thyroid replacement hormone (usually synthroid) for three months.  I developed severe hypothyroidism.  There were some days, I could not physically get out of bed, and I felt like I was 100 years old.  I had extreme pain from the surgery still, and I was confused, exhausted, and I could barely function. A year later, the left side of my neck is numb, and I still have shoulder pain. 

I receive e-mail’s weekly from other thyroid cancer survivors who are on synthroid, but the dosage is wrong, and they are experiencing hypothyroidism.  It paralyzes your life, and for me, the surgery ended up being the “easy” part.  When any organ is removed from your body, and a drug has take over the function, there are going to be complications.  Fortunately for me, when I finally was able to take synthroid, after radioactive iodine (RAI), my dosage was correct the first time.  I felt better hours after I took it.  One year later, I still have not had to have an adjustment in the dosage.  My doctors tell me this is extremely rare.  However, I still feel like I lost three months of my life.  Time with my boys, I will never get back. 

Four months after my surgery, I started running.  I was going to run in one 5K race- the Race for the Cure for breast cancer.  I enjoyed it, and it gave me a new appreciation for my health and fitness.  I think it is very important to become active as soon as you can.  It helped me get out of a “cancer patient” mode, and on to the next stage, which is a new life- cancer free.  Running made me strong again, physically and mentally.  I could not have known at the time, how strong I was going to have to be, in the very near future.

At the time I was diagnosed with cancer, I had been separated from my husband for three months, and in the process of divorce.  It was not an easy divorce to say the least.  There was a small “break” if you can call it that, while I was recovering, but after the RAI treatment, the divorce continued, adding an enormous amount of stress to my life.  I had a friend tell me after cancer, getting divorced would seem like a vacation, but this sadly, was not the case.  There wasn’t anything I could do, except plow through it until it was over.  The divorce was finalized last month, at the end of May.  Divorce was far harder emotionally than cancer had been.  

But the hardest thing- harder than cancer or divorce- was the unexpected death of my mother in February of this year.  It is the most devastating thing to lose a parent.  My mom came out last July (she lived out of state), a few weeks after my cancer surgery, to help me recover.  At this point,  I had hypothyroidism, and she took care of me, and Ryan and Cole during my parenting time.  It was one of the last times we had together.  I saw her for a few days at Christmas, and then I watched her die.   

Her friends all came to visit her, and they told me how utterly worried and scared my mom had been over my cancer.  My mom had never let on to me she felt that way.  She had always been so strong- always telling me I was going to beat cancer, and I was a very healthy person.  Her friends also told me how distressed she had been over my divorce-over the tactics that were being used, and the high stress I was under.  Again, she never let me know she was feeling like this.  She gave me strength and encouragement to keep going.  She told me all the stress the divorce was bringing to me was like cancer itself.  I could let it consume me, or I could fight, and beat the stress- knowing there would be a bright future when it was all over. 

I had seven days with my mom, while she died.  A day and a half later after I had returned home from her death, I had to jump right back in to divorce mode, and meet with a child family investigator (CFI) and a forensic psychologist for interviews and psychological testing.  These interviews and tests would result in parenting recommendations for the judge in the divorce case to consider.  This was in March, and cancer seemed like it happened a million years ago.

Now it is a year later from that day.  A year ago, I thought having cancer was one of the worst things that could happen to me.  Over the last year, I have learned-harshly-there are worst things than cancer. 

I remember thinking if I could get through this cancer, I could get through anything.  In a way I was right.  It turns out, cancer was the “easiest” of the three things I faced during the past year. 

I would not have gotten through any of this without my family and friends.  I hope I tell you enough how much I appreciate and love you all.  You are the ones who got me through this past year.  From the moment I checked into the hospital a year ago, to just the last few days- thank you for being there for me when I needed you.

For anyone who is reading this, who has just found out they have cancer, is going to have to have cancer surgery, or is recovering from thyroid cancer, there will be good days and bad days.  Don’t let the bad days devestate you.  Cancer changes a lot about your life, but you also have an opportunity to really see a lot of love and support around you.  It teaches you to let go of the small stuff, and to just enjoy the days you are given. 

Some of these days will be dark.  Some of these days you are going to have to fight with every ounce of strength you have just to get to the next hour.  Some of these days you will have to let other people help you, because you won’t be able to do it all.  Some of these days, you will have to let things go, and be okay with just being.  Some of these days you will question if it is even really worth it.  When you realize, without a doubt, yes it is- then the clouds start to fade away.  Instead of feeling weak, you feel strong.  Instead of feeling sorry for yourself, you feel grateful you are alive.  Instead of feeling guilty, you feel content.  Then you will know in your soul you have beaten cancer, and it is far from the end- it is your new beginning.

 

One day after surgery, recovering in intensive care, 6-13-2009

My scar, seven days after surgery, 6-19-2009

My scar, one year after surgery, 6-12-2010

6-12-2010

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Cancer Cole Family & Friends Health Me Ryan

Good-Bye to Cancer

Two weeks ago, I had a follow up appointment with the surgeon who performed my thyroidectomy and neck dissection, Dr. S.  He said the incision site on the side of my neck was still swollen some, and is healing.  That side of my neck is pretty numb- I get a “pins and needles” sensation when I touch it, but it doesn’t bother me.  Dr. S. said the entire incision is healing perfectly, and just as it should.  He examined my neck and throat area and said everything felt just like it should- translation: no new enlarged lymph nodes or nodules.

I informed him I had not had my thyroglobulin level tested since I completed radioactive iodine (RAI) therapy in August.  Dr. S. ordered the blood work and I left with the perscription in my hand for the test.  I was very happy everything seemed to be on track, but I knew the results of thyroglobulin test would be the true indicator if I was cancer free.

The type of thyroid cancer I had, papillary, produces elevated levels of thyroglobulin.  Before my surgery, Dr. S. told me a person with no cancer thyroglobulin’s level would be zero.  Mine before surgery, was 38!  Dr. S., said that was very high, and he had never seen a person my age with that high of a thyroglobulin level.  Before my RAI treatment in August, the endocrinologist measured my thyroglobulin level, and they were amazed to see it was down to 4!  They said it was very rare- almost impossible to get the thyroglobulin level that low, with just surgery.  They said a reading around 13-20 is more common.  This confirmed Dr. S., did an outstanding job on my surgery. 

I had no reason to feel anything but optimistic, assuming the RAI would have killed off any remaining cancer cells. Still, I couldn’t help but worry a little bit.  All those thoughts crept into my mind…all the what-if’s?  It didn’t help that I had to wait a week for the results- for some reason the lab was really slow in getting the bloodwork back. 

But last Thursday, on my 37th birthday, Dr. S’s office called with the results.  My thyroglobulin level was undetectable and surpressed.  The levels were perfect, and I am officially cancer free! 

I was beyond thrilled and happy!  As it sunk in, I got very emotional.  It had been six months from my first diagnosis to this news, but it has seemed at times, the longest journey of my life, and like I would never reach this point, or if I did reach it, I would never be quite the same again.  I thought back to when Dr. S. called me on a Saturday in April to tell me he was sorry, but the biopsy showed I had thyroid cancer, and how the second I hung up with him I cried, and didn’t stop for hours. 

That seemed like a lifetime ago.  Everything I have experienced- the tests, the cancer diagnosis, the uncertainty, the fear, finding out the cancer had spread,  the surgery, the time I lost with my children, the incision, the numbness in my neck, the medical mistakes that were made, the diet, the severe hypothyroidism, the medication, the days I could barely function- all of those things, brought me full circle and I am healthy again. 

I couldn’t wait to share the happy news with my family and friends- all those people who have been there for me through all of this.  And most of all, I couldn’t wait to tell the boys.  Ryan smiled and hugged me when I told him- he understands all of it- probably even more than I care to admit.  Cole does too, but he asked if that meant the doctor didn’t have to cut my neck open again. 🙂

It has occurred to me sometime in the past few days, that this is the end.  My cancer journey is over.  There will still be routine check-up’s to monitor my levels, but thankfully papillary cancer has a very high cure rate, and reoccurrence is very rare.  

I have shared my experience with thyroid cancer in part, because it was very hard for me to find real-life information on it when I was researching it.  Most of the medical information describes it as no big deal, more or less.  While that is true from a medical standpoint, this experience has been anything but “no big deal.”  I have categorized every time I have written about my cancer, under the Cancer topic (35 posts in all), and I hope what I have experienced, will help others in their research. 

I am amazed and touched by the e-mails I receive daily from other thyroid cancer patients and survivors- in every stage.   I’m shocked that so many people tell me they have learned more about thyroid cancer from my blog than from their doctors. So many of the patients are afraid- just like I was.  I hope the cancer posts will continue to help and inform.  I will try to continue to answer as many of the personal e-mails that I can.  I am brainstorming some ways I can offer more assistance personally, and locally to thyroid cancer patients. 

This is where my experience ends.  It has been a journey that has been one of the hardest for me, but also one that has taught me so much about myself and others, and one that will never leave me.   But for now, it is time for me to say good-bye to my cancer.

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Cancer Family & Friends Health

Thyroid Cancer- Body Scan Results

I received the results to my full body scan on Wednesday- and it is very positive.  My doctor said the scan was clear- the only place cancer cells were still showing up at, were in my neck.  But she said this was expected because surgery alone can’t remove every cancer cell. She said the radioactive iodine will continue to work over the next few weeks, and I will have another blood draw in about a month to measure my thyroglobulin level. 

The thyroglobulin level measures cancerous thyroid tissue in the body.  For someone who doesn’t have thyroid cancer, that level will be at zero.  Before my surgery my level was at 38!  My surgeon said that was very high, and he said it was unusual for the level to be that high.  That translated into I had a lot of cancerous thyroid tissue.  Yesterday the doctor told me what my level is now, just taking the surgery into account, and it is down to 4!   She said it was rare that the thyroglobulin level drops that much just from the surgery.  She said the surgeon did a remarkable and thorough surgery.

So in a month, when I have the level tested again, it will be after the radioactive iodine has had a chance to work so the thyroglobulin level should be even lower.  My doctor said everything else looked great- there was no traces of any cancer elsewhere in my body.

For now, I can take a deep breath and relax a bit.  I am pretty much cancer free, and have an excellent prognosis of remaining cancer free.  It seems a bit surreal, but I’ll take it.  I still have to have my thyroid replacement hormone dosage tested in a few weeks, and twice a year check-ups to make sure the cancer hasn’t returned.  My shoulder is still recovering from the surgery, but I am through the worst part of it, and am so happy the prognosis is so positive.  I couldn’t have asked for better news.

Thanks once more for all the support, prayers, kind comments and e-mails, well-wishes, and love.  I wouldn’t have made it this far without them.  Again, thank you to all my family and friends, who put their lives on hold to help me during these last few months.    I am looking forward to getting my life back to normal, and celebrating with all my family and friends in the coming months.   

One of these celebrations will be very special.  I never thought by sharing my experience on my blog, it would lead another mom to me who underwent thyroid cancer surgery the same day as I did, who had the same recovery time, who underwent radioactive iodine treatment at the same time, who lives about an hour away from me, and who has also been given a clean bill of health.  This is my cancer-fighting partner in crime, and we are finally going to be meeting each other soon, and celebrating that we helped each other beat cancer. 

This weekend the boys and I are going camping with my family- grandparents, brothers, sisters, aunts, uncles, and cousins.  The last time we were all together was when I was in the hospital during my surgery.  It will be great to put that chapter behind us, and and start a new one- cancer free.

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Cancer Family & Friends Health

Friends

 

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In everyone’s life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer

I have written many times over the past few months how grateful I am to my family and friends, and the help they have given to me while I undergo thyroid cancer surgery and treatment. 

As the days progress, and I am now in my seventh week after my thyroidectomy and neck dissection, still without any thyroid replacement hormones, I have had to rely on my family and friends more than ever.  

I literally have to get through the days, hour by hour, because waking up and facing a whole day in its entirety is too overwhelming. I honestly don’t know how I am going to make it hour to hour, let alone an entire day.  I have found though, in these hours, my friends have stepped in and made them manageable and give me that extra boost I need to make it through to the next hour.

I could have never imagined after all these weeks that have passed, the friendship and love that continues to flow my way.  Today I had an exceptionally hard day-  I just had no energy, and I mean none.  Sitting in a chair was making me tired.  During the last week or so, I have developed an insomia- I am so tired I can’t keep my eyes open, but yet I am unable to sleep.  I can sleep for about 30 minutes at a time and then I am awake for hours.  I am sure it is hormone related, and will clear up, but this has taken its toll on me, physically and emotionally.   

Over the weeks, my friends have cooked, brought over meals, cleaned the house, mowed the lawns, and have sent me notes of encouragement. Some friends make me laugh, some friends don’t let me feel sorry for myself, some friends encourage me.  I am so grateful for all these kind acts shown to me.  It is like a bouquet of flowers- each flower adding something unique to the bouquet. 

Today I received a sweet message from one of my oldest friends, J.  She was my best friend in middle school, and we have been out of touch for years.  We have recently been in touch via Facebook.  We actually live in the same state and have been trying to get together.  But because of my health right now, I can’t.  She wrote me such an encouraging note, and she hasn’t seen me in 20 years. 

One of the moms in my mom’s group is battling breast cancer.  She is in her final round of chemotherapy, and she sent me an e-mail saying she had missed that I had thyroid cancer.  She has gone through so much more than I have, and she took the time out to send me a note of encouragement.  I was in tears reading her words.  We have only met a few times, as we live in different cities, but I was so touched by her strength and encouragement.  It was like a shot of pure confidence that I can and will get through this. 

My lawn was severely overgrown.  It was budding with weeds.  It looked awful, and there is a lot of lawn between the front and the back yards.   It depressed me every time I saw it.  Seven weeks ago, I was mowing the lawns myself. 

My friend, Melissa (NatureDeva), and her husband came over.  Melissa mowed the lawns in 90 degree heat, and then asked what else she could do for me.  Her husband, M., came over too and built window well covers for three basement windows, and cleaned them out, so the boys would be safe while playing outside.  Then he tried to fix the garage door opener for me.  They have a son Ryan’s age, and they could have been spending time with, but they helped my family today. 

My spirits instantly soared when I saw the mowed lawns- it was like that symbol that everything is going to be okay, and for now things are.  I can’t thank Melissa and her husband enough.

I also can’t think of all that my friend, Amy (Crunchy Domestic Goddess), has done for me without getting tears in my eyes.  From the day I told her I could possibly have thyroid cancer to the present, she has been right there with me.  From letting me vent, to calling me, to offering her help, to cooking, to organizing, to visting me in the hospital,  to thinking of ways to help me-all the while she has been battling some very tough issues herself, and being a full-time mom. 

One of the most unexpected things Amy has done, was she entered us in a contest to win an all expense paid trip to New York City next year, to attend the annual blogging conference by BlogHer.  We both made plans to go this year, and obviously I couldn’t, but Amy went last week to Chicago for her first BlogHer conference. 

Her roommate told her about a contest, Mabel’s Labels was having- the Wish You Were Here Contest. An attendee to BlogHer this year had to submit a video of themselves saying who they wished could have been there with them.  Amy’s entry explained why she wished I was there with her, and the reason why I was not. 

Yesterday she found out that her video made the finals!  They only picked 10 finalists and will hold a random drawing on Tuesday to determine the winner.  I was so excited to hear that we made the finals- it has been a great pick me up, and has been a fun distraction imagining if we really won- all the fun we would have together in New York next summer!  Even if we don’t win, I am so touched that she took the time to do this- I know she did it more for me than for herself. You can click here to see Amy’s video entry- she is the last one. 

Thank you doesn’t cover it, but right now that is all I can say- Thank you to all my friends, for everything you have done and continue to do for me. I know you all are busy, and have your own families to take care of.  But for the time you have given to me and to my boys, when I can’t do it myself- thank you.  It means more to me than I will ever be able to tell you or thank you.

My inner spirit is rekindled every day by your actions, words, and positive thoughts you send my way.  I would not be able to make it through this without all of you. I am so lucky to have such a beautiful bouquet of friends.  I love you all.    

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Cancer Family & Friends Health Me Mothering

Thyroid Cancer- Low Iodine Diet & Waiting for Radioactive Iodine Treatment

This past week has been a nightmare- an absolutely awful nightmare.  I don’t even know where to begin. 

As I wrote previously, my surgeon said one of the proactive things I could do before having my thyroidectomy and neck dissection was make an appointment with an endocrinologist.  So I did.  One he recommended at one of the hospitals in my state, Colorado, with an excellent reputation. 

When I made the appointment back in MAY, I specifically pointed out to the scheduler, that my surgery was June 12th, and the appointment with the endocrinologist wasn’t until this past Tuesday- July 21st.  She assured me that was fine.  I asked her again- that six weeks wasn’t too long to go.  She told me again, it was fine.  These are the “experts” so I figured I was in good hands.

Six weeks later I am a hormonal, emotional, tired, wiped out mess.  I feel like I have aged 50 years in the past six weeks.  Evidently the hormone your thyroid produces regulates all kinds of bodily functions- like energy levels, emotions, metabolism, memory, concentration- just to name a few.  When I met with the endocrinologist on Tuesday, Dr. S., (another Dr. S.) she was shocked to find out I had not been on any thyroid hormone since my surgery.  She looked at me and said, “My god, I bet you feel like crap.”  That is one part they did get right.  She told me they would rush my radioactive iodine treatment (RAI).  Only problem- I haven’t been on a low iodine diet. 

I called a week after my surgery and asked this same office if I should be on a low iodine diet.  They told me no- I would receive all that information at my appointment. I pointed out again, that I had a six week time frame, and they told me it was fine.  I’d learn everything about the diet during my appointment. 

Since I can no longer manage this mess by myself, my sister, Vanessa, called bothered them until she got the person on the line that could help.  That is how we found out the scheduler had “old” information.  The treatment coordinator, B., told her I could have received RAI three weeks after surgery, but I have to be on the low iodine diet now for ten days.  I could have started the diet the week I called to ask them about the low iodine diet, and have had all of this behind me.  But now I have almost two more weeks of “feeling like crap” and trying to figure out a diet and what I can and can’t eat. Vanessa expressed the displeasure this has caused me, and the state I am in.   B. apologized and sent me a personal e-mail apologizing as well.  Vanessa scheduled the RAI treatment for me, for August 3. 

I am so mad and beyond frustrated at this hospital.  I talked to a friend who is a nurse,  who told me this is negligence, and there is no excuse for something like this happening.  But, what can I do?  It isn’t B.’s fault.  It is one of those nightmare things that you never imagine will happen to you, but it does.  So somehow, my family and I have to get through the next 2 weeks to make it to the appointment where I can receive the RAI treatment.

I still don’t know how long after the RAI treatment I have to wait until I can receive the replacement thyroid hormone.  As it is now, it will be 8 weeks and counting.  In the meantime, I am losing more energy every day, my boys are suffering, and I am missing work. 

I am having a hard time with this blog post.  I said I was taking a break from it two weeks ago, but then I said I wasn’t, but I am going to be forced to now.  I mentally and physically do not have the energy to write much until I am finally on the thyroid replacement hormone.  For now, what energy I do have, I have to put into my boys and into my health. I will try to post quick updates on Twitter when I can. 

I appreciate any thoughts and prayers you can send my way- two weeks seems like an eternity right now, but there is nothing left to do, except get through them.  Thanks again to everyone for all their support, love, and help. I literally could not do this without my family and friends.  Love you all. 

Heather