I can’t write much, but a picture speaks a thousand words.  The boys’ dad watched them for the weekend, and my dad took me shopping for low iodine food for the week.  Then he helped me chop, dice, and grilled the chicken and meat.  This was all recommended to be done before I was in the hypothyroidism state, so it was very difficult to get it done, but we did. 

The diet says you can eat meat you prepare yourself, and as many fruit and veggies,  as you want (no soy), but I can’t get enough protein from the fruits and veggies I need, so having the meat will help me immensely with my energy level for the week.   

The website that I got some of the recipes from (you can download their free cookbook), and read up on the low iodine diet, is ThyCa- (Thyroid Cancer Survivors Association).  I found it to be very helpful, and so far the recipes have turned out great. One good tip they had was to read the labels.  We started to buy some organic ingredients, but found the organic black beans for instant, had sea salt in them, which is worse than just regular salt, because sea salt is higher in iodine.  I would have never had know that, if I had not read through their information.

 Here is a picture of most of the low iodine food we were able to prepare:

I would have never been able to do it without the help of my and my boys’ family, so thank you.  I am still waiting to hear when I can take the thyroid replacement hormone.  Until I can take it, I am not going to start feeling better, but as of today there is only one week to go on the low iodine diet.

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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

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I know I said I was going to take a mini break from blogging, but I miss it.  It is a good outlet for me, so I am changing my mind and deciding I just am not going to be able to blog as much as I have in the past.

During the last week, I have noticed the lack of hormones kick in- just as my Dr. said they would.  I was never very hormonal when pregnant, but in a a way I feel like I am now.  I will be happy and fine, and then for no reason I will just start crying for ten minutes, really hard- and then I will be feeling fine again, until the next time it happens.  Not knowing when this is going to happen is hard- especially around my boys.  They ask me why I am crying and I tell them it is just part of mommy having to get well again.

I have been able to do almost all the rehab exercises for my shoulder, except for a few where  I am supposed to hang my neck down. That just hurts too much to do it right now, and my Dr. said don’t do any of the exercises that cause pain.  Just trying to keep up with a house and two boys is giving my shoulder a good workout. I am trying to do light chores with it- ones that don’t hurt but ones that I can use the muscles. 

I have been able to cut my pain medication into about half the dosage- it says  I can take one every four hours, but I am finding I can go about six to eight hours between one.  The other day, I tried cutting them out all together and just taking Advil.  OUCH!  Clearly I am not ready for that, but I feel when my current perscription of pain medication is gone, I will hopefully be ready to just be on ibuprofen.  I have had wonderful friends do yard work, and stop by with flowers and food, and of course my family has been there every step of the way too.  I know that has contributed in my being able to rest and not overdo it. 

I meet with the endocrinologist next week to find out what I have to do prepare for the radioactive iodine treatment I need, and I know that is going to involve my diet.  I haven’t had much of an appetite at all.  My doctor said usually after surgery, most patients gain weight because the thyroid controls your metabolism.  That has been the opposite for me.  I have been forcing down light foods like chicken, pasta salads, tuna, yogurt, and cheese.  But nothing sounds good to eat.  I have even stopped drinking coffee in the morning.  If you know me you know I LOVE coffee, but the thought of smelling coffee actually makes me nauseous.

I slept for almost 14 hours yesterday and woke up and felt like I hadn’t slept at all- another aspect the thyroid controls.  So I feel tired all the time.  I get bouts of energy where I will do what needs to be done, and then I am pretty much wiped out for the day. 

My sister had her annual exam yesterday and she made them check her thyroid.  They said it felt fine, but they were going to test her levels anyway in view of my situation, which made me happy.  I have talked to a lot of people who have never had their thyroids felt during their exams.  As I wrote here, and as everyone told me, if you have to have cancer, thyroid cancer is the “best” one to have, but it is still cancer.  I didn’t have to have the neck dissection on both sides of my neck, because of early detection.

But my neck aches every minute of the day.  It feels like my neck was cut off, and sewn back on.  There is no good cancer to have- I am grateful mine is so treatable and the survival rate is so high, but having your thyroid out (and lymph nodes as well in my case) is not something you ever want to have to go through.

I plan to write an amazing review of a scar healing product that was sent to me, but I want to devote an entire post to that, but I have been truly amazed by it.  I am going to post some updated pictures of my scar, because I feel this is life- cancer happens, and people do recover. 

I lost someone who I thought was a friend, over my posting my cancer surgery pictures from my blog, but the e-mails from people that are experiencing cancer themselves, or have just found out they have thyroid cancer has been overwhelming.  Not a day goes by without someone sending me an e-mail, thanking me for sharing my story, because it has helped them, or someone they love who is dealing with thyroid cancer. 

My goal in posting my cancer story, pictures, and recovery is not to be gross, or muster up sympathy for myself, but to help people realize that it is a condition that you can be treated for and recover from.  It is not a pleasant experience, but you can recover.  I recently read something I really liked about cancer- it said, “Cancer is a word- not a sentence,” and I feel that is so true.  Life hands us experiences, like cancer, we never expect, but the body, mind, and spirit can recover- and it does. 

If looking at scar pictures bother you, please don’t look any further. I plan to have more pictures when I write the review of the scar healing product but for now, here is how my scar is doing:

Scar on June 26, 2009

Scar on July 15, 2009

I know I sound like a broken record, but I just can’t thank everyone enough for the love and support that you continue to send my way.  It helps me more than you will ever know- Thank you.

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I am going to be taking a short “vacation” from blogging.  My cancer recovery is not going as fast as I had hoped, and right now I have to concentrate on resting and trying to heal.

I appreciate the e-mails so many thyroid cancer patients have sent me- those who have already been through it, and those who have just been newly diagnosed and have questions.  Feel free to send me an e-mail if you have any questions (my e-mail is on my Contact Me page),  and  I will respond to you as soon as  I can.

I have also archived all my cancer posts in the right hand side bar under “cancer” so you can read about my experience  and what I have learned so far, and hopefully you may find some answers to your questions in some of those posts. 

I am hoping my mini blogging break will be short lived, and I will be able to blog again in the very near future.  Right now though I need to concentrate on healing and getting my body ready for the radioactive iodine treatment it needs.

If you follow me on Twitter, I will try to post short updates there on how I am doing- that is much easier right now than writing a blog post, and of course if you are a Facebook friend I will see you around there.

As a final note for now, PLEASE have your health care provider check your thyroid at your annual exam.  If anything feels “off” get in for an ultrasound as soon as you can.  That saved me from having to have my neck totally dissected to remove the lymph nodes that the cancer had spread to.  My surgeon credited my nurse practitioner who caught it early and insisted I have an ultrasound.  In my opinion, I don’t think there is enough information out there informing women of thyroid cancer.

Thanks again for all the support you all have given me during this process.  I will be back stronger and healthier, and will share the rest of my thyroid cancer experience.  Cancer can happen to anyone- please take care of yourselves and follow up with anything you or your health care provider thinks is abnormal.

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I have been trying to follow my surgeon’s orders and take it easy and rest as much as possible since my thyroid surgery and neck dissection on June 12th.

I have been at my dad and step-mom, Jean’s, house recovering during this time while Ryan and Cole have been spending some scheduled vacation time with their dad.

My surgeon, Dr. S, had been right- the pain in my shoulder has been brutal.  I slept on it funny the other night and I couldn’t even raise my arm enough to comb my hair yesterday. 

The thyroid controls metabolism and my surgeon warned me that I could gain a lot of weight during this time, but the opposite seems to be happening. I have no appetite at all. Nothing sounds good, and some foods are making me sick to my stomach.  My appetite is gone- I have been drinking Ensure (another Dr. suggestion) and trying to eat. 

The pain medication makes me feel nauseated if I don’t eat, so I have been trying to eat as much as I can.   Some of my friends have pointed out that Ensure really isn’t much more than sugar and have been giving me some healthier suggestions on other sources of food and protein I can eat.  I am planning on trying these and will keep you updated on how that goes. 

I had an awful day on Tuesday.  I almost fainted while I was out walking.  I got hot and sweaty and felt like I was going to be sick.  I stopped into a store near my dad’s house and the sales lady helped me sit down, and got me some water.  I fortunately was only about half a block away from home, and made it back and laid down the rest of the afternoon.

Some days the pain is fine- I can go six or seven hours between pain medication, but the last few days, I think I have overdone it and now have been watching the clock for the every four hours until it is time for the medication again.

I have been doing the exercises the rehab. physical therapists have given me to do, and those help. I have been trying to help out around the house too, by doing small chores that use my shoulder, like cleaning mirrors and sweeping.

I can’t even imagine if I had to have the neck dissection on the right side of my neck like my Dr. originally thought.  It would be so much worse and I am grateful I am healing overall.  It is not as fast as I would like it to be though, but I am getting there. 

I have had so many kind e-mails and well wishes, and those help too.  I have had people ask me what is next so here is what I know at this point.

Ryan and Cole are going to come back to the house with me on July 5th, and my mom is coming in from Minnesota to stay with us for a few days to help me.  My wonderful friends have been mowing my lawn, doing some light housekeeping, and are going to cook some meals for us. 

I am planning on taking the time my mom is out here to get back into a routine with the boys and take advantage of her help and the help of my friends to get our lives back to “normal” as much as possible.

I want to do some fun things with the boys this summer- take them swimming, take them to the zoo, take them to the park, and take them to play-dates.  This sounds exhausting even as I write this but, I am determined, and I will take it one day at a time.

I have a follow up with my surgeon on July 9th, for him to check the scar and the overall healing from the surgery.  I could not be more thrilled on how how the scar is healing.  It is still looks awful to me but this is what it looked like last week:

I developed a rash to the antibiotic on the last day I had to take it so that is why my neck is red and shows the rash, but the scar had been that red.

On Monday, this is is what the scar looked liked:

The rash is fading and so is so much of the red from the scar.  I have been putting Neosporion on the incision every day, and I just received a product yesterday that I am going to blog more about- it is actually to heal C-section and other surgery scars, but I want to take pictures and document the scar healing before I blog more about it.

I meet with my endocrinologist on July 21st.  At that point they will tell me the diet I need to be on to get my body ready for the one dose of radioactive iodine I will have to take, in order to kill any remaining cancer cells in my lymph nodes.

For now, I am not on any special diet except for watching my iodine intake, no kelp, kale, or flax seed.  As I understand it for a few weeks, I will have to take in a lot of iodine, and then none at all for a few weeks in order to “starve” these cancer cells of iodine.  They warn me my hormones will be out of whack and I could become depressed (fair warning to everyone).

The thyroid is the only organ that can absorb iodine, so when I finally take the radioactive iodine my cells and lymph nodes will absorb up the iodine like crazy.  But since it will be poison, it is a very effective treatment in killing off any remaining thyroid cancer cells in my body.

I will have to be quarantined for about 48 hours, and not around anyone. I will have to take the radioactive iodine in the form of a pill. Depending on my blood work, the endocrinologist will determine how strong the treatment has to be.

Thankfully, since my pathology report from my surgery did show I have stage I papillary thyroid cancer, I can be quarantined at home, and not in the hospital.  Obviously my boys will go to their dad’s house during this time.

After the radioactive iodine, they will start me on the thyroid replacement hormone that I will have to take for the rest of my life.   I will also have to have ultrasounds and blood work every six months to watch for re-occurrences.  I am expecting to find out more details after I meet with the endocrinologist, but my chances for survival are excellent and since my surgeon was able to remove so many of my lymph nodes, he feels the chances of re-occurrences are very small.

I am still taking it day by day, but things are getting better for the most part every day as well.  I am not done with the process yet, and won’t ever really will be, but I know there is no other cancer in my body and the radioactive iodine will ensure no more cancer in my lymph nodes.

I know I have been saying this a lot, but I can’t just thank everyone enough for all the support. Thank you isn’t enough- but I hope the gratitude in my heart I have for all my family, friends, and well-wishers shines through. 

I’ll continue to keep you all posted, and in the meantime I hope everyone is having a fun, safe, and healthy summer with your families. 

Love, Heather

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