Survived the Week

I survived my week of Radioactive Iodine and Isolation!  I stayed only one night at the hospital…that was interesting.  The entire room was covered with paper or plastic (including the floor, toilet, and every doorknob).  But I finished a whole book, did exercises every hour, looked at magazines, and caught up on some mindless TV.  It went quickly and wasn’t bad.

Then started my 6 days at home by myself.  I had some nausea for the first several days but it was relatively mild.  I discovered that if I put surgical gloves on, I could freely use the computer so I was able to check work emails and work on some Shutterfly photo books (I’ve been meaning to do Beckett’s baby book for about 2 years now).

On about Day 4 I was REALLY missing my kids!!  I got to FaceTime with them each day but still missed them a lot.  I enjoyed the alone time and opportunity to “catch-up” on some things but it was odd to not be busy every second as a Mommy.  The kiddos come home in about an hour and I’m so excited to see them.

Thank you so much to my dear friend, Jodi, for the care package (one present for each of the 7 days of isolation) to keep me entertained this week!  And thank you to so many others for magazines, tea, organic fresh juice, and delicious food that was dropped off at my doorstep. 🙂  And thank you to my in-laws for allowing the kids and Jer to stay at their house for a week.  I am truly blessed to have so many wonderful people in my life.

It really was not a bad week but I’m glad to have this behind me.  I had a full body scan about an hour ago and will get the results tomorrow.  Fingers crossed that the RAI killed most remaining thyroid cancer cells in my body (it will continue to kill some off for about 6 months so I will have another scan at 6 months and 1 year).

On another note, the rain has come!  I think it is officially here to stay.  We were lucky to have a wonderful September and most of October but it still takes a little “getting used to” the rain again for me.  I have to work harder to keep my “positive attitude” sometimes on gloomy weather days.  So on my way back from the hospital I rocked out to Pharrell Williams’ song “HAPPY” and stopped to get myself a Mocha (rarely have those anymore).  Bring on the Portland rain! 🙂

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Radioactive

As my Aunt Nanne suggested, here’s my moto song for the month:

“RADIOACTIVE” by Imagine Dragons

I head to the hospital tomorrow (Wednesday) to take my dose of Radioactive Iodine.  Hopefully this will kill off any remaining thyroid cancer cells in my body.

I will be at the hospital for 2 days (maybe 3) in isolation.  Some of this sounds strange at first (no visitors, can’t bring cell phone, or laptop, or anything that is not disposable).  On second thought…I’m starting to look forward to it.  I have a few paper back books, several magazines, crossword puzzles, some coloring books (from my friend and her kiddos), and lots of healthy snacks to keep me occupied.  My oncologist and physical therapist reminded me to “exercise” even in my hospital room.  So I have an extra therapy band for arm exercises and a list of things I can do in isolation to keep moving (wall push-ups, arm triceps dips using the side of bed, yoga stretches, etc.).  Plus I can always catch up on mindless TV programs.

Then I will come back home and Jer and the kids will go stay at his parents for several days.  After Radioactive Iodine, you are okay to be around adults after a few days (with some minor precautions) but not cleared to be around young children, pregnant women, or small pets for 7-8 days.  I will miss the kids but again secretly looking forward to some needed Mommy “down-time”. 🙂  I feel like things have been SO busy lately between my work, Jer’s crazy work schedule, all my appointments, and the kids.  So a week to slow down and just take care of myself sounds pretty nice.

Enjoying Fall

Apple Picking:  

I really wanted the kids to experience picking their own apples.  I finally found a farm fairly close to our home that had Organic U-Pick.  Jer was working so I took the kids by myself.  Luckily they were great helpers and were gentle with the apples.

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Pumpkin Patch:

We had lots of fun at Bauman’s Pumpkin Patch the first weekend in October!  It ended up being really warm that day so didn’t quite feel like Fall yet but still lots of fun.  The kids loved the many slides, fun houses, bee trains, and picking out their own pumpkins.

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Updates: Cowden’s / Voice / Next Treatment

I haven’t posted in awhile…life has been busy.  Between thyroidectomy recovery, physical therapy for my neck, Jer’s work schedule, my work, follow-up appointments and blood work, and the kids…there is little time for much else. 🙂

Here are some updates on my health:

VOICE:

I met with the vocal specialist (Dr. Schindler) a couple weeks ago.  My voice after the thyroidectomy was just a whisper.  He explained to me that during my thyroidectomy, Dr. Milas called him in to look at where the thyroid cancer tumor had attached to my left vocal nerve.  Dr. Milas had to scrape my nerve to get the cancer off (no other choice) but Dr. Schindler said given this, he and Dr. Milas agreed I had a 0% chance of my voice returning to normal on its own.

So with those odds, I told Dr. Schindler to go ahead with the “temporary fix” in the office that day.  I got several shots of collagen into my neck into the paralyzed vocal nerve.  This was not a comfortable procedure (during and for about 24 hours of horrible sore throat).  Then I couldn’t talk at all for 5 days or so.  Now my voice is mostly back but always sounds like I am getting over a cold or that my voice is tired from yelling.  The collagen will wear off in about 3 months.

In February, Dr. Schindler will perform a surgery (I have to be awake for this surgery) to insert an implant (stent) to push my paralyzed vocal nerve over toward the center (so my right side can touch it and produce sound).  During the surgery, I have to talk so Dr. S can find the exact spot for the implant that should restore my voice to normal permanently.  Again…amazing what modern medicine does now.

I jokingly said, I was awake for two c-sections, I can do this.  But just having the shots into my neck was hard coordinating my swallowing with the Dr., etc.  Of course if it will bring my voice back, I can put up with a couple hours of discomfort (just like the Dentist chair…right?). 🙂

COWDEN’S SYNDROME (PTEN hamartoma tumor syndrome):

– Although I do not have a mutation in my PTEN gene (20% of Cowden Syndrome individuals do not have a verified mutation), my Oncologist has classified me as having Cowden’s Syndrome (based on clinical presentations alone).

– Cowden’s Syndrome is very rare.  It is typically associated with an increase risk of breast, thyroid, and uterine cancer.  Other cancers include melanoma, colon, and kidney.  I do not have the “hamartomas on my skin” which is typical for Cowden’s but I do have hamartomas on my liver (benign tumors).  I also had a “suspicious for melanoma” skin spot removed off the bottom of my foot last year.

– So given this syndrome, I will have my uterus removed (Surgery probably in January).  The other reason for the hysterectomy is that I am taking tamoxifen (medication to block estrogen for my breast cancer).  This medication has a side effect (less than 2% I think, but still listed) of uterine cancer.  So my Oncologist feels taking the uterus out is the best option for two reasons…I agree.

RADIOACTIVE IODINE (RAI) Treatment:

– To help “kill off” any left behind thyroid cancer cells, I will do RAI on October 15th.  This should be painless (swallow a pill) but then I have to stay away from the kids for one week.  I might be staying at the hospital (in isolation) for the first two days then Jer and kids will leave the house for 5 days.

NEW GOAL:

Originally I had hoped to have all surgeries and major treatments done by the end of 2014.  My new goal…finish these things one year from the date I was first diagnosed (March 11th).

After the RAI next month, I should have a break for November and December (Which will be good for enjoying the holidays and a trip each month).  Then hopefully just two more surgeries in early 2015.

THANK YOUS:

Thank you again for all your continued thoughts and prayers.  The meals, food gift-cards, snacks, offers to help with the kids, and cards/emails are very much appreciated.  (Again…I feel badly for not doing formal thank you cards.) Please know I appreciate all the sentiments!

I hope you all are enjoying the changing season.  I love FALL in the Northwest.  I can’t wait for Pumpkin Patches with the kids, Halloween costumes, Fall leaves, and anything scented “cinnamon spice”.

 

Another Trophy for my Collection

My friend, Beth, passed on a wonderful quote to me before my first surgery:

“Never be ashamed of a scar,

it simply means you were stronger

than whatever tried to hurt you.” ~Unknown

Here is my newest trophy proving I am “stronger than cancer”.

DSC_0226This photo was 2 weeks post thyroidectomy and lymph node dissection.  It looks even better now at almost 3 weeks post.

No Voice Yet but Feeling Better

Everyone is asking “how am I feeling?”:  I started feeling better the last two days…I just still get tired quickly.  I still have a VERY stiff and sore neck and shoulders (started Physical Therapy yesterday).  Also my voice is not back.  So I’m avoiding the phone and unfortunately can’t raise my voice.  I may need to get a whistle so I can get the kids’ attention. 🙂  I’m still uncomfortable and choke often on liquids (the nerves along the left side that control coughing and prevent choking are still irritated).  I see the vocal nerve specialist in two weeks and he can help with those symptoms if they persist.

I had my post-op with thyroid surgeon yesterday.  The scar is healing very well and we went over my biopsy results.

During my 7 hour surgery she removed the entire thyroid, 1 parathyroid (left 3 intact), and 20 lymph nodes on the left side of my neck.  11 of those 20 lymph nodes tested positive for papillary thyroid cancer.  She also removed some cancer from my vocal nerve and cricothyroid joint.  Even with those results though I am STAGE 1 which is good.  However, I am at a High Risk for recurrence.  So…I am no longer “fighting” the recommendation that I need to proceed with Radioactive Iodine (RAI) treatment.  I realize now that I do need a dose of that to help “kill” any remaining microscopic thyroid cancer cells.

One positive thing is:  my surgeon has said this many times…”This thyroid cancer is not what will take ‘me’ to heaven”.  She is confident that I can live a long life regardless of this thyroid cancer (even if it returns years down the road).  I do get to “check in” with her every 6 months for the first 3 years and then every year for the rest of my life.  Good thing I enjoy going to see her.  She is extremely gifted in her specialty and very funny.  She always has several medical students and residents following her around and she loves that I don’t mind helping them out.  I let her video tape and photograph my neck, voice, etc for education.

My sister Kim came from Virginia to help.  She left her own 1-year old at home and came here to cook, clean, take care of my kids, and even organized some cabinets for me!  Loved having her here!  Now my mom is here to help for the rest of the week.  I’m so lucky to have so much help.  Thank you also to my other sister and the rest of my family too for all the food, organic juices, and meals to freeze.  I’ve also received some very useful restaurant gift cards and boxes of healthy snacks from extended family and friends!  THANK YOU all for your continued support!  It sure makes the recovery process easier!

Home Again

Can’t say that today was much fun. So glad my husband was able to stay with me for the several hours at the ER. My neighbors were a very intoxicated man who pondered walking into my room and a suspect being guarded by two officers. Glad I had my own security guard. 😉

I just needed some IV calcium (I was feeling very weak). Of course I wasn’t a priority at the ER (understandably so).

Anyway I’m home resting and feel much better.

I did get to talk with the voice specialist surgeon today briefly. My vocal nerve is very irritated for sure. We won’t know for weeks or months if it will repair itself. If not, he has several options to help.  For now…I’m limited to whispering.

Thank you again to family and friends for watching the kids and keeping our fridge full!!

 

 

 

Back in the hospital

I’ve started feeling worse…tingling in arms, legs, hands and overall feeling very weak. (Sign of low calcium from parathyroids).

Just had my drain removed (yay!) but being admitted for a few hours to get IV calcium.

Fun times hanging out in ER.

Home for Recovery

I was able to come home yesterday evening.  Given that I knew how to empty my surgical drain better than the nurse aids, and the lab kept poking me to check calcium levels, I was happy to come home. 🙂

The surgery went even longer than expected.  I was under anesthesia for over 7 hours.  Since waking up, I can feel mucus in my chest and throat.  Almost impossible to clear it out though without irritating the huge incision wrapping around the base of my neck.  I have a lot of very sore muscles and the worst sore throat I’ve ever experienced.  But I am able to move around better than after my mastectomy at least.

I’m uncomfortable but it could be much worse.

The surgeon said that there was some cancer attached to my vocal nerve along side my thyroid.  So she had to “scrape my vocal nerve”.  I’m so lucky because she did not have to cut it and it appears my voice will come back.  It is raspy and hard to speak loudly for now but I do still have my voice.  It may be irritated for several months.  Anyone who knows me knows I can talk “a lot”.  So already the past couple days communicating in a whisper is so frustrating.

Anyway, I’m heading back to bed.

As always…thank you all for your continued support!

 

Kristen Out of Surgery

Kristen had a successful thyroidectomy today.  She went into surgery at about 8:00 AM and didn’t get out of surgery until around 4:00 PM.  She is staying the night at OHSU tonight and will hopefully be home tomorrow.  The surgery went pretty well, her voice is scratchy and she had a little bit harder time with the anesthesia than her prior surgeries.  She will post more details when she gets home.

Jeremy