The Waiting is the Hardest Part

Surgeon meeting is set for April 22. Surgery date unknown...targeting the week of June 9th. Waiting is rough. With 10 major surgeries under my belt, I know what to expect. 

I'll sit at Mass, praying, and suddenly taste the saline in my mouth...that familiar taste from when the IV gets started. Then my mind goes to the waking up in recovery...the beeps...the blindness (I always wake up hearing first and the ability to see seems elusive for a long while)...the voices...the confusion...the gratitude for having gotten through it. Then I push back tears...usually unsuccessfully. 

I'll walk outside with my dogs and get a brush of cold air, and suddenly I am in the operating room. Operating rooms are cold. My mind goes to transferring from the warm stretcher to the very narrow, cold operating room table. I remember, too many times, of being stretched out...one arm for blood pressure, the other arm for the IV, the beautiful and compassionate nurses who talk to me...and me always making jokes. "Can you do a tummy tuck while you're in the neighborhood?" "Make sure you give me the good stuff in that IV...I like rye and ginger with lemon." Then I laugh and cry at the same time. 

Working is the only real distraction. Yesterday I was building a calendar in Canva and the world around me disappeared, as did all the toughts of surgeries. It was pure bliss. It was productive and focused. Cooking is the second best distraction. I have a list of things I will cook today and I will get lost in the task at hand. Pure joy.

Mass, Rosary, prayer time and the middle of the night are the hardest times. These are the quiet moments when the sights, smells, tastes and memories of surgeries past creep in and remind me of surgery future. It's hard. I do my level best to pray during these moments for others. I listen intently when the students read at Mass or Rosary or Stations, etc. Their young voices...strong and crisp and clear...are joyful. Each one with their amazing gifts. It helps, yet it's hard to focus. The middle of the night is rough. My normal pattern of "sleep like a stone" has been rudely interrupted with worry. I stream the Rosary...normally putting me back to sleep after a decade. This week I heard my 150th Hail Mary and realized I'd listened and prayed three Rosaries...an hour...ugh. I now often lay awake wondering how I'll have strength to get through the day. But I do and God is good.

Sometimes I wish I could do surgery tomorrow. Other times I wonder if I could put it off for a year. Then reality interrupts these thoughts.

Why the week of June 9th? A. I haven't met with the surgeon yet and then we need to get on his surgical calendar. B. School gets out May 23 for the staff. C. Our foreign exchange student has his parents visiting our home through May 29. D. Our niece graduates high school on June 3rd. E. Our wedding anniversary is early June. Of course things could change on April 22. Waiting is hard.

Mayo Day 5 - Finally!

TL;DR: No cancer. Surgery over the summer.

Details: PHEW! What a day. I learned a lot! For starters, this thing is big. We knew it was 100 x 70 mm (about 4 x 2.75 inches). But my pulmonology consult indicated it's more like 5 inches. Good news first: The PET scan showed no cancer. Obviously they don't know for sure until the grapefruit - now known as the pomelo because of its size - is in for pathology under a microscope. But all indications from scans are that it is benign.

No biopsy needed. It's a wasted step to get to the same conclusion - it has to come out. No genetic testing because that's only done for targeted therapy for chemo. The surgery needed is called a thoracotomy. It's a large incision on the side. The pomelo is too big for robotic surgery. I should not lose any lung if it is contained, as it appears to be on the scans. The best time to do the surgery is whenever it makes sense in my life. For me, that means finishing out the semester and making it to summer break. The surgery requires three days in the hospital. I'll wake up with a chest drainage tube. Leaving the hospital is dependent on removing the tube and managing the pain. Then the recovery is 8 weeks. One could watch and wait if it were smaller, but with a pomelo sized tumor - it's gotta come out soon. Interestingly enough, my pulmonary function test was normal for someone of my age, sex, height, weight, etc. My oxygen saturation is okay for me. 92%. I always hover in the low 90s unless I take really focused deep breaths. The scarring in my lungs is likely from multiple respiratory infections and not related to the pomelo. The pomelo is also not responsible for the long recoveries from the upper respiratory infections. I should continue to use my CPAP. There's no need to increase lung capacity...but I plan to use my incentive spirometer anyway.

Probably the most interesting news is that, unlike the CT interpretation, the pomelo did not arise from the lung nodule seen on the 2012 scan. It's a different entity. The nodule is still there. The pomelo is adjacent to it. The 2012 nodule is a touch bigger and still "benign and mostly stable." It must have been lonely and decided to have a friend move in next door. Sigh. 

My pulmonology expert recommended a particular surgeon. I have a consult with him in late April via video conference. Then we'll schedule surgery based on the surgeon's availability and also after school is done for the school year.

It feels very good to have a game plan! It feels amazing to have been lifted in prayer by so many wonderful people. I could literally feel the prayers...could feel the angels around me. I was disciplined and did not look at the PET results last night. I'm glad I waited and got the expert's interpretation, along with him showing me the images. It was fascinating to see the scan results and to learn more about this pomelo.

I did do some research on where to have a surgery like this done. Options were LA, New York and Mayo, with Mayo at the top of the list. So, yes, I will go to Rochester, MN for the surgery. I did have the expert look at my chest X-Ray from November 4th - and there the pomelo is - plain as day.

I'm part way home now - about a third of the way. I'm tired. I was up frequently last night with a lot on my mind. With that weight mostly lifted (I'm not thrilled about a major surgery [number 11] and a long recovery), I will sleep well tonight and finish the drive home tomorrow. God is good...all the time. All the time...God is good.

And on the third day, God sent snow... (Mayo day 4)

Today was my PET-CT. I've never had one of those, so this was uncharted territory for me. It's not a bad test. Prep is eating no carbs and fasting for 4-6 hours before being injected with radioactive glucose. I chose 6 hours. The protocol said 4, but it was worded funny. So I looked online and found 6 hours. First they check your fasting sugar...mine was 87. Then the injection. Then you rest in a dark space with no phone, no TV, no reading and no working or talking for one hour. That was admittedly nice.

While in the resting area, I overheard another patient being checked in. The tech said to him "you're so lucky to get this PET scan yet today. Normally we schedule weeks ahead, but the snow storm opened up some appointments." So I thought to myself - God sent the snow! That allowed me to get the pulmonary function test yesterday and the PET scan today! Maybe it even influenced getting tomorrow's appointment with the expert in the pulmonology department.

The test itself is easy - takes about 20 minutes of lying still on the board that goes in and out of the CT tube. No big deal...except you have to keep your arms over your head the whole time, and no wiggling. My arms really started to ache after about 15 minutes. I kept thinking of Jesus on the cross and how uncomfortable and painful He must have been...and this, in comparison, is nothing! Next thing I knew, I was finished and dismissed. I got a call from a dear friend from West New York, NJ (originally...now she's in the DC area) and we chatted about prayer, the Lord's intervention, the Communion of Saints, etc. It was just what I needed.

By this time, I was starving! I started fasting at 8:30 and it was now about 4:30. I headed over to the Canadian Honker and got a table for one. It was early, so I didn't feel bad taking up a whole table normally meant for two people. A cheddar burger, fried cheese curds and their chocolate raspberry cake was on the menu. But I wasn't that hungry. I ate about half the burger (no bun), half the cheese curds, a third of the cake, grabbed some to-go boxes and was on my way.

I chatted with Bob for a while and now I'm in my hotel room, expecting to chat with Miriam in a bit. I don't know what tomorrow holds. I see the provider at 2 p.m. Interestingly enough, the instructions say that in that clinic you may not wear anything scented...no perfume, no scented lotions, no scented deodorants, etc. - because it impacts how some of the other patients breathe! I love it! I hate strong scent! Headaches for me.

I decided, unlike my usual process, to NOT look at the PET scan results in the portal tonight. I'm not in my wheelhouse. If it were thyroid cancer, I'd be reading it. But this is a whole new ballgame...so I'll wait (impatiently) for the provider to explain everything to me tomorrow afternoon. I'm sure he'll have a game plan for me. I'm checking out of my hotel - being hopeful that I'll head home after the visit - at least as far as Des Moines tomorrow. But, I'm flexible and if he indicates that things are urgent, I'll check into a different hotel and stay the weekend. A different hotel because I've not been happy with the cleanliness level of this one (Holiday Inn Express). I extended check out until Noon. I'll head to Mayo early and pass time in the business center and the chapel. I always manage to find nice people wherever I go. So it will be good. As my mother would say: "Pray with confidence." That's what I'm doing.

Mayo Day 3 Continued

What a day! My radiologist for the ethanol ablation was not available, so they matched me up with someone else. He turned out to be excellent...so excellent that he questioned the treatment and by the time the appointment was done, we canceled the ethanol ablation. There's a lot that went into the decision and I trust him. It was a relief to not have to get stabbed in the neck multiple times over two days. Plus it freed up my schedule for more important stuff...like dealing with the "Grapefruit."

I started my day at the scheduling desk in endocrinology, advocating for myself...I needed to be seen by pulmonology. Within a few hours I had a PET scan scheduled for tomorrow to make sure that the Grapefruit is not cancerous...or if it is, that it hasn't spread. I learned that my case was in triage in the pulmonology department. So I went there and talked to a wonderful lady at their intake desk. She assured me that the case was being reviewed and they would contact me to schedule an appointment. I asked her about the pulmonary function test (PFT) that was ordered, but not scheduled. I asked if she could schedule it. She said "Yes, do you want to do it right now?" Sure! Let's get this done! The only downside was I was hungry and I skipped lunch as a result. But that's no big deal.

The PFT was so interesting. My coach (he really was like a coach) was named Mac. We did all kinds of breathing routines, before and after albuterol. It took about an hour. They asked me if I wanted to then volunteer to be in a study to which I replied "no, I'm hungry." 

I did stop to write a poem - I don't write often anymore...but this was on my mind:

BLACK and BLUE
My neck is black and blue.
My spirit is black and blue.
My emotions are black and blue and purple and red and orange.
My guts feel black and blue.
My brain feels black and blue.
The patients around me look black and blue.
I'm looking forward to green and gold.

Mayo did in fact call to schedule an appointment. Friday I am set to meet with a pulmonologist to go over all the test results and get a game plan together. I'm annoyed. I miss home. I'm grateful to God for the great care here. I'm blessed.

St. Joseph's Day Curveball at Mayo (day 3)

I'm in no mood to blog. I'm feeling numb. But here goes:

Ethanol ablation procedure today. No big deal...been there, done that. It'll be fine. It'll hurt. I'll offer it up, as I always do...

But, last evening I got the results of my lung CT. I requested it...glad I did! Findings with my comments inserted in highlight:

EXAM: CT CHEST WITHOUT IV CONTRAST

 

COMPARISON: Chest CT 11/6/2012

 

FINDINGS:

Stable thyroidectomy. No small soft tissue pulmonary nodules to suggest metastatic disease. Tiny calcified granuloma right lower lobe. Scattered areas of linear scarring in the right middle lobe, left upper lobe and lingula as well as both lower lobes. (None of this is alarming. Scarring is probably from four bouts of Covid and various other respiratory infections. Granulomas are no big deal.)

Tiny calcified lung granulomas.

 

Interval development of a large approximately 100 x 70 mm (YIKES - that's a grapefruit!) soft tissue mass within the posterior inferior pleura which appears to originate from a prior 18 x 10 mm pleural nodule overlying the posterior right hemidiaphragm. Findings suggestive of enlarging fibrous tumor of the pleura (Dr. Google says this is 80% benign...so that's reassuring). No pleural effusions.

 

No lymphadenopathy. Tiny esophageal hiatal hernia. (I haven't even bothered to look into this because it's nothing in comparison to the grapefruit!)

 

New mild 31 mm dilatation of the main pulmonary artery, previously 24 mm) which can be a sign of pulmonary arterial hypertension. (The only research I've done indicates that 29 mm is the high end...so 31 mm is no big deal. I just had an echocardiogram last year. This goes on the back burner until I deal with the grapefruit!) Heart size normal.

 

Slices through the upper abdomen negative.

 

Old right rib fracture.

 

3D maximum intensity projection (MIP) images were created on a dependent workstation as ordered by the treating provider and reviewed by the radiologist to increase sensitivity for detection of pulmonary nodules.

 

IMPRESSION:

1. Large 100 x 70 mm soft tissue mass in the region of the posterior inferior pleura which appears to originate from a 18 x 10 mm pleural nodule overlying the posterior right hemidiaphragm on chest CT of 11/6/2012. Findings most likely represent enlarging fibrous tumor of the pleura. (So I came in early to Mayo today to get ahead of the expected snow. I took the shuttle to avoid driving later today. I went straight to my provider's office and spoke to scheduling. I'd like to see the proper expert here at Mayo while I'm here. I don't know if that's a pulmonologist or a thoracic surgeon. I did some research last night and it seems that the proper course of action is to remove the grapefruit, get clean margins and then figure out what it is. Biopsies seem to be skipped over since it has to come out either way. This is all I know at this point as of 8:42 a.m. on March 19th. I'm waiting on scheduling. I'll stop back at their desk after the ethanol ablation. I'm hoping the impending snow storm creates cancellations and someone will see me. I'm pissed at the radiologist who read my local chest x-ray from November that indicates everything is normal. Everything I read suggests that this is very visible on an x-ray. It's allegedly slow growing. So why wasn't a flag raised in November?????? Ugh. I'll let that anger go and focus on the path forward. In the meantime, my decaf chocolate latte is delicious and the next step is the ethanol ablation. No fasting required!)

2. No new pulmonary nodules and no adenopathy to suggest metastatic disease in a patient surgical history of thyroidectomy and thyroid cancer.

I'll update when I know something. Prayers are welcome! I'm praying for all of you. St. Daria is the patron saint of lung issues. I'm keeping her busy!

The day between St. Patty's Day and St. Joseph's Day at Mayo (Day 2)

Let's start with the good news: The biopsies done yesterday are benign! YAY! No new thyroid cancer. This is great. The TSH of 8.9 (way too high) might be from taking doxycycline for the upper respiratory infection I had last month. So we re-test that in 2 months.

Now for the not so great news: The "peanut" lymph node from 2012 does need re-treatment. I was offered the option of doing it tomorrow and Thursday as scheduled, or I could let it percolate some more and come back and treat later on. I figured since I'm here, I might as well get it done. Plus a snow storm is predicted for tomorrow...I'd rather ride that out and start the drive home on Friday when the weather is better. I also figured treating when I'm younger is better than waiting. So, that means tomorrow I get numbed up with lidocaine again and get multiple pokes with ethanol. It'll hurt. I've done this before. They don't numb the actual lymph node...just the path there. The ethanol will burn and the pain will be referred...likely down into my shoulder. I can do this! Then on Thursday it's a repeat of tomorrow. Tomorrow is St. Joseph's Day! This is an important Saint in my life. My original thyroidectomy in 1996 was done on St. Joseph's Day by a surgeon whose first name is Joseph. I love St. Joseph...an adoptive parent too! I doubt I'll find St. Joseph pastry (zeppole and sfinge) locally. If you are reading this from New Jersey - eat some for me!

The ultrasound shows that the peanut is stable from last time (July) but with increased vascularity. For many years it was undetectable or very small and no vascularity. So the growth and the increased blood flow is worrisome and best to knock it back with the ethanol. Last time the ethanol bought me 14 years. So hopefully this time it gives me even longer. The follow up is another ultrasound in 6 months. My provider is comfortable with me doing the ultrasound locally. I need to find someone who is really good with neck ultrasounds...so the research begins. I'll be looking at Tulsa and Joplin. I've had great luck in Joplin...so I'll start with some phone calls there. I like coming to Mayo...but it is a 10 hour drive. I'm willing to try something local.

On a side note...I used my rudimentary Spanish to help a guy from the Dominican Republic to print out his medical records. His name is Pablo. I'm praying for him. If my lung CT gets done in a timely fashion, I'll head to Mass at 3:30. Based on yesterday - I'm not hopeful ;-) 

Let's hope the lung CT doesn't throw me any curveballs. I reviewed the one from 2012...turns out I have an old broken rib on the right side. Who knew? If I knew that back then, I'd forgotten.

I'm pretty black and blue today...more updates as the week progresses.

St. Patrick's Day at Mayo (day 1)

Phew. Day 1 is done. It went well, considering. 6:50 a.m. for blood work. Results: Cancer marker [Tg] is undetectable (hooray!), TSH is way too high at 8.9 (no wonder I've been tired).

I had a long break, so I went looking for a Catholic Priest. Fr. Innocent was delightful, thoughtful, funny, and just plain nice! It was great to have him available through the Spiritual Care department at Mayo. I planned to attend Mass at 3:30 too - but that didn't happen. Read on. Fr. Innocent (a name given to him at birth) gave me the Sacrament of the Sick (I didn't ask for it - he offered).

At this point, I was hungry...it was 10:30 and all I had had thus far was a cup of decaf after my blood work. I found an Irish pub and had a really yummy shaved ribeye sandwich and a lemonade for brunch. No beer with a biopsy coming up...

The biopsy went well. The Radiologist should write a book on bed-side manner. Wow. Kind, soft-spoken, thorough. He biopsied some worrisome lymph nodes - one on the left (level IV) and one on the right (level IV). He did say that they were less worrisome than last summer and he wasn't alarmed with what he saw...that made me feel pretty good going into it. He said my endocrinologist wanted to make sure nothing else was going on. His team was awesome. The ultrasound tech was fun - originally from California by way of Connecticut. We reminisced about how we miss Jewish delis and Italian bakeries. The lab tech who prepared the slides was super nice too. They did a time out to vote on if they were doing the right procedure, and if they all agreed on the process (safety check). They all voted verbally. So I voted too! LOL. They explained that Mayo has found that six samples per lymph node is ideal. With two needles per side for the lidocaine, that meant a total of 8 pokes per side or 16 all together. Ugh. Only the lidocaine hurt in the moment. The samples were just a feeling of pressure. I got taken back for my 2pm appointment at 3pm...finished up at 4 so I missed Mass. I left with two ice packs to use later when the lidocaine wore off. Oh, it did. Sore neck! Black and blue. Feels bruised and stiff. I stopped at Best Buy for a laptop charger...I forgot mine at home. Then I went to Costco for gas. I ordered dinner and picked it up (didn't eat most of it - not hungry). Just about that time I felt like I really needed the ice packs. I got to my hotel room, chatted with Bob and  took a long nap after the ice packs were no longer cold. Tomorrow I get results of the biopsies and have a CT of my lungs scheduled. I did learn from the radiologist that I would likely have treatment (ethanol ablation) of the lymph node from 2012 that has grown and developed some vascularity that wasn't there before. But the final word will come tomorrow.

Some pre-Mayo highlights: I drove from Kansas...stopped for rest and Mass in Des Moines at a church that features the Risen Christ rather than a Crucifix. I met up with an old, dear New Jersey friend there (Irene) and she greeted me with flowers to brighten up my hotel room. We went out for breakfast then I drove to Rochester, MN. There I met up with a dear, Deere friend (Tonia) for dinner. I enjoyed catching up with both of these amazing women.

I'm tired...so catching some Zzzs before tomorrow's appointments. 6-10 inches of snow is expected here on Wednesday. Oh yay! Thankfully the hotel has indoor parking...and the city of Rochester knows how to handle the snow. So long as it's gone from the roads for the ride home (scheduled to start that drive early Friday, unless something changes).

I haven't posted in such a long time!

Wow, I haven't updated my health related blog in ages. So much has changed in my life since that last update.

Life is good! I came out of retirement to be the Interim Principal at the Catholic School that is a part of my local parish. It's a daily reminder of how much I've aged...the arthritis pain is still there and I'm still tired, but overall I keep up okay with those Kindergarteners through 6th graders. In a big way, they keep me young, and smiling! Every day is an adventure and I'm learning a ton of stuff - things I never really knew about in the world of education. My hat goes off to anyone who works with our youth. Teachers are truly amazing.

Back to my health. My hyperparathyroidism seems to be okay. I'm stable. Calcium is low normal and PTH has settled back into the normal range. I started a bisphosphonate. I'm not happy about that, but it was time. I had so much bone loss that I couldn't put it off any longer. I'm glad I stalled for two years. In that time, I needed a dental implant. The tooth that died in a car accident when I was a kid finally caught up with me. Jaw bone health is an issue with bisphosphonates, so I'm grateful that implant was completed before I started on the Alendronate (Fosamax). 

So let's talk about thyroid cancer. Sigh. I went to Mayo summer 2024. It's the first ultrasound I've had since 2012 where the news was worrisome. And, I had to fight for that ultrasound!! My previous Endo retired. His notes said I was due for a neck ultrasound in 2024. Mayo tried to insist that I'm so far out from my last thyroid cancer recurrence that I didn't need anything done this year. So I advocated for myself and finally got that valued Mayo appointment - and lucky thing I did! The pesky lymph node that was treated with ethanol alcohol had been impossible to locate until last summer. It was peanut shaped in 2012 and it decided to grow some, and it's still peanut shaped. While my Tg (cancer marker) is still undetectable, this growth has my provider concerned and she wants to "hit it with another round of ethanol." If that wasn't enough, the ultrasound also found 5 or 6 worrisome lymph nodes, all without the fatty hilum. Of course, she had a plan. She wanted me back in 3-6 months for that plan to be completed. But, that would've interfered with school. I asked her if she was comfortable waiting until Spring Break which will be 8 months. She was okay with that. So, here's the plan:

Visit Mayo on Monday of Spring Break - Ultrasound. Same day, biopsies of the lymph nodes (oh yay, 7 or so pokes in the neck - or at least for the ones big enough to biopsy). Hopefully those lymph nodes don't look so suspicious this time around. Anyway, on the Tuesday, I see my provider and find out the results. On the Wednesday I am scheduled for ethanol ablation, if needed (probably needed for at least the 2012 lymph node). Oh yay...more pokes in the neck...3-4 per lymph node. Then on Thursday I am scheduled for day two of the ethanol ablation...so more pokes. It'll be painful, but I can handle pain. I'm more concerned about the risks to the local structures - in particular my laryngeal nerve. My ability to sing is pretty much gone - I have a small range and only the ability to sing a few notes before my voice pretty much cracks. My speaking voice is fine if I build in voice rest, and if I don't get sick. If I can come out of this round of treatment with the same voice, I'll be thrilled and grateful to the Lord!

It's worth mentioning that I'm no longer with ThyCa. I ended my service on their Board at the conference in Houston in September. It is important that I listen to my own heart and put my energy and time into educating future saints! It's amazing to be in the business of saving souls and helping grow the school. Frankly, there's just not time to support a secular non-profit when I'm working for a Catholic non-profit. As for my passion for the Low Iodine Diet, I like the ETC LID (Everyday Thyroid Cancer) - it's out of Canada and their philosophy on the LID is more aligned with mine. Find them on Facebook.

Let's talk about back health. My fusion of L4/L5 was in 2016. I do have some of the symptoms that started about 10 years before I caved in and did the fusion. The leg numbness comes back when I'm on my feet for a while (which is often at school). So I try to get to a chair or a bench often. Sitting is essential. With some field trips coming up, I do wonder how I'll get through those days...but some how it will work out (scooter rentals anyone??)

I'll try to log in again after Spring Break with an update. It's in God's hands. He is good and my prayer consistently is "Thy will be done." As always, I offer up my thyroid cancer woes for those with bigger battles like breast cancer, kidney cancer, etc.

Symptoms & Bloodwork Results

I've been tired, cold (unusual for me) and have had trouble losing weight. I thought for sure my Tirosint at 100 mcg wasn't enough. I was wrong. TSH is right at 1.33. Free T3 is midrange. So, that's not it.

Maybe it's what my daughter says: "You are getting older."

I also have a lot of arthritis pain...especially in my hands and hips. My Vitamin D came back over 80! So I am cutting my daily supplement by half. My PTH is also elevated, but calcium is low normal. That's a conundrum. I'll supplement with more calcium. I'm not good about swallowing those darn horse pills! I try to get it from diet, but that's challenging too.

Hopefully cutting back on the Vitamin D will help cut back on the joint/bone pain.

I'm also headed in for an MRI of my cervical and thoracic spine due to some numbness. More on that when I get the results. 

I switched to Tirosint - again

So I've been hanging out on Reddit in the r/thryoidcancer subreddit. It's a great environment of newly diagnosed and others dealing with the thyroid cancer journey. Reddit is a bit unique in that it tends to attract a global community who really want answers. Anyways, someone on Reddit wanted to know more about Tirosint and since it comes up often, I figured let me blog about it rather than answer questions as they come up. So, here goes:

I learned about Tirosint years ago at a ThyCa conference - there's one coming up in September - the 16th to the 18th - sign up at www.ThyCa.org/conference - it's FREE. Anyways, the folks who make Tirosint where there exhibiting and I learned that this formulation of levothyroxine (T4) contains only 4 ingredients...the T4 itself, water, glycerin and gelatin. COOL! No dyes, no fillers, no lactose, no nothing! So, way back then, I switched to Tirosint. I think it was in or around 2012. I immediately liked it. I required less...I think I went from 137 mcg to 125 mcg. But my insurance didn't like it and I eventually switched back to Synthroid...then to generic levothyroxine...all driven by the insurance and my wallet!

Other things I liked about Tirosint - well, needing less was a big thing. But the brain fog was less and I had an easier time losing weight (when I tried...trying is key and I'm not good at it LOL).

So, fast forward to more recently. A friend of mine was put on Tirosint and let me know about a mail-order deal through the manufacturer themselves where it's only $50 per month. Whoa! I'd pay that out of pocket to get Tirosint...so I again switched. Relatively recently I was on 137 of generic levothyroxine. I was too hyper so we lowered it to 125...but I was still going hyper so we dropped even lower but with the switch to Tirosint, my endocrinologist suggested 100. Whoa! That's not much!! But I just did my bloodwork and my TSH was 0.9. I prefer 1.5 so it's still a bit "hyper" for me, but it's not technically hyper so it's all good.

So, that's my Tirosint story!

Some updates

 The visit with the ENT at Mayo had this to say in his follow-up notes:

ASSESSMENT / PLAN 

#1 Parotitis

 

It was a pleasure seeing Ms. Jerauld in clinic today. She is a 58-year-old female who had an episode of parotitis which was appropriately treated. There was concern for a parotid mass, but a CT scan performed did not demonstrate any masses or lesions. I did call Dr. N. to confirm because I did see a hypodensity in 1 of the axial slices, but he confirmed that this was artifact and was not seen any of the other slices. I told her that this is all good news. Should she have recurring symptoms, sialoendoscopy could be considered in the future but certainly not at this time. She can follow-up on an as-needed basis.

The results of the spinal X-Ray was as follows:

#2 Osteopenia

Have placed order for spinal x-ray given significant loss of height. If compression fractures are present would recommend treatment with bisphosphonate therapy. If negative, then recommend continuing conservative therapy. Will follow-up with her with those results on the portal. She was encouraged to continue with current calcium and vitamin D regimen as well as routine exercise.

ADDENDUM:

Vitamin D levels are adequate, with 25 Hydroxyvitamin D total 57 ng/mL. Spine x-ray demonstrates anterior wedging of several mid and upper thoracic vertebral bodies and compression of superior endplates of T4 and T5. Contacted patient by phone to discuss recommendation to initiate bisphosphonate therapy. Discussed risk/benefit of Alendronate therapy along with appropriate administration technique and she is agreeable to proceed. Prescription was sent to her local Walgreen's Pharmacy at her request. Placed order to repeat bone density in one year. Patient has requested that copy of this note be sent to her local spine surgeon n Joplin, MO.

#3 Cancer Thyroid Papillary Personal History

No worrisome features for recurrent or metastatic disease on thyroid ultrasound.

ADDENDUM: Patient notified via phone call that her Thyroglobulin level is undetectable. She is now 10 year cancer survivor. Recommend repeating thyroid ultrasound in 5 years unless abnormal physical exam or laboratory results.

The research into Alendronate now is underway and I will likely start that soon.

Most results are in...all good news

Turns out the mass in my parotid is gone. It was just an infection. No follow-up needed, unless the infection returns. 

In the meantime, since it's 2022 and my last thyroid cancer occurrence was in 2012, my next neck ultrasound is in 5 years. Wow! I'm part happy and part terrified. It seems like such a long time when I have had neck ultrasounds yearly, sometimes more than one a year, for 26 years. I only skipped 2021 due to the pandemic. 

I will rely on Tg testing (blood test for my cancer marker) and neck self-exams.

I am only waiting on the spinal x-ray results.

Time to celebrate!!

Quick Mayo Update, day 1

Day 2 is this coming Friday. In the meantime today was ultrasound, blood work, CT scan with contrast, and I met with my Endocrinologist's nurse practioner. 

Results:

Thyroglobulin cancer marker : Undetectable (yay).

TSH 0.5 so reducing dosage from .112 to .100 and switching from levothyroxine to Tirosint (yay).

Parathyroid hormone is elevated (darn it) but calcium is okay...so watchful waiting on that.

Neck ultrasound was clean (yay).

I don't have results from the CT of my parotids yet...that's on Friday.

An x-ray of my spine was ordered for Friday due to loss of height.

Stay tuned for more details...

Long overdue update

Well, just when things are running along smoothly, I hit a bump in the road. This note I just wrote to Mayo Clinic explains it:

Hi Doc and your nurse practitioner (whom I have not met yet, but will on March 22).

My left parotid [left saliva gland right in front of the ear] bubbled up 2 weeks ago. I was, and still am, traveling in New Jersey. I right away self treated with hot compresses, sour candy, massage. I found an in-network ENT nearby - Dr. L. of NJ. He prescribed a week of antibiotics, saw me in the office and ordered an ultrasound (U/S). He just called with the results and assures me everything has been faxed to Mayo.

He said the U/S shows it's not a stone, but instead a "complex lesion" which he described as partly fluid, partly solid. It's 7 mm. There were also reactive lymph nodes that he said did not show signs of pathology. He said the largest of these lymph nodes is 1.5 cm. [I didn't put this in the note to Mayo, but I did ask what he meant by no signs of pathology and that means the fatty hilum is present - this is a very imperfect test but certainly more good news than bad news].

From my vantage point things are much improved...what first felt like an almond, then like a chic pea, now feels like a pea. My face was visibly swollen, and now it's hard to see anything. So, I'm really, really hoping this is all just an infection, but Dr. L suggested a follow up ultrasound in 4 weeks and a biopsy if it's either the same or has grown. I have the CD with me and I will bring it to my appointment on March 22nd.

Dr. L also mentioned maybe needing a CT scan. Will you be able to let the U/S folks know that they need to check my parotids? I figure the rest we can figure out together when I'm there on the 22nd. Thank you kindly, and I look forward to seeing your NP when I get to Rochester!

Be safe, dj 

And so the waiting begins. I hate the waiting. Odds are this is an infection. But I can't seem to shake the fear of salivary gland cancer. A dear friend passed from his battle with it and another friend survived hers and is doing well. What did 150 millicuries of radiation do to my saliva glands back in 1996? Did it cause damage? Is this just an infection and I'm worried about nothing? Sigh.

Keeping me sane is Yoga. Yoga with Adriene. She's amazing and I do aim for daily time on the mat. I've been pleased with every other day as I pack up Dad to move him to Kansas to be near me. Also keeping me sane are the daily tasks of sorting, packing, sorting, packing.

I have a feeling the appointment at Mayo might grow to be lengthier than originally planned. The original plan is/was blood work, ultrasound, meet with the doc's NP later that day. Then go home. The way Mayo operates if they decide they want to do more, I'll stay longer and get it all done. So nothing changes other than pack some extra clothes and bring enough medication for an extended stay.

In the meantime - life goes on!

25 Year Cancerversary

It's hard to imagine that 25 years ago today, at just about this hour, I was in my hospital room at Genesis East in the Quad Cities, recovering from my total thyroidectomy and partial neck dissection. It was (and is) the Feast of St. Joseph. My surgeon's first name was Joseph - I felt that was a good omen.

I wish I could say that as of today I am 25 years cancer free...but that's not been my story. The thyroid cancer recurred later that same year, 1996, and I had surgery again on August 16th. From there I was never really out of the woods with a Thyroglobulin (Tg, cancer marker) that was always creeping upward...ever so slowly. Early on I recall blood work that would say I had undetectable Tg, but when it was stimulated (with a high TSH), it was detectable. So, there it lurked...waiting to wake up.

The cancer did wake up in 2012. Thanks to amazing doctors at Mayo Clinic, I benefited from Ethanol Ablation and since then, I have had N.E.D. (no evidence of disease). So, I guess I'm thyroid cancer "free" for 8 and a half years, while on this 25 year journey. Bottom line - I'M SILL HERE to fight!

I had my Mayo Clinic check up earlier this week. We did it virtually by using a blood draw kit that was mailed to me. I had blood drawn locally (in Joplin, MO because I like the medical facilities there) and I had a bone density test in Joplin as well. Here are the details:

Tg undetectable (YAY!) and Thyroglobulin Antibodies are less than 1.8 (YAY).

TSH = 0.4 - too low for my taste AND I managed to skip two pills the week prior (which almost never happens...but it did)...so my TSH might actually be even lower. I will re-test it in a few weeks (around 6-8 weeks from now) and we'll decide what to do with my levothyroxine. I would like to take less! Taking too much leads to bone loss and an increased chance of A-Fib.

A1C = 6.1 - pre-diabetic. I've been here before...more exercise, fewer carbs, take off some more weight and that will be OK. The doc said there was no need for medication.

Bone Density test - I've reversed the bone loss from the hyperparathyroidism (yet another whole story, read below if interested) and things look good!

Plan: Retest TSH in a few weeks and he'll retest Creatinine too since I was a bit dehydrated when I did the blood test and he wants to make sure this ever-so-slight elevation is not a big deal. Do a neck ultrasound in 1 year at Mayo Clinic. Do a bone density test in three years.

So here I am 25 years into this journey, and to celebrate, we are eating St. Joseph's pastry that I had shipped in from NYC. We'll also watch a movie tonight. It's a far cry from 2005 when we had the "life party" to celebrate 15 years...but COVID changes everything.

I wish my Mother were still alive to see me reach this milestone. She passed away on Easter Sunday, 2020 - April the 12th. I think this is a synchronicity - but I'll have my second Pfizer COVID vaccine soon and the day I achieve 95% immunity per the CDC is April 12th, 2021. Mom's smiling from Heaven.

Well dear friends and family - stay well, continue to mask up, continue to fight the good fight, stay healthy and reach out when you can! 

For more great resources on Thyroid Cancer, go to www.thyca.org and be sure to check out the 9th Edition of the Low Iodine Cookbook where I served as lead editor with two other wonderful volunteers. For questions about the diet and using it to prepare for thyroid scans or treatments with radioactive iodine, write to recipes@thyca.org.

Oct of 2018 Mayo visit

Mayo update: Doc said "This is your best visit since starting your care here in 2012." Reversed the fatty liver syndrome and dropped cholesterol and lipids significantly. Both due to 12 lb. weight loss on their scale. Cancer marker UNDETECTABLE and zero reactive lymph nodes in my neck (I think that's a first in 22 years). Fasting sugar still high at 112 but A1C is 5.9, so no meds for that.  Best news is the complete reversal of bone loss!! I gained back all bone loss in my spine thanks to Mayo removing the diseased parathyroid in 2016 and I increased bone mass in my hips due to walking more. I get to take half a synthroid on Sundays since I am far too overdosed (TSH 0.05...yikes...no wonder I am always warm). I get a whole year off for cancer scans and 2 years off for bone scans. Yay! He said to lose 8-10 more pounds before next October. I do best when he sets goals for me. :-D

01Dec16 Update

Lots has happened since my last post.  My spondylolisthesis got much worse and I lost the ability to walk independently on August 20th.  But, I've had back surgery and I'm doing great!  I chronicled that in a separate blog which I'll link here: My Spondy Blog

Time for an update

First things first.  Since removing the diseased parathyroid, the deep down in the bone aches are gone.  YAY!  I had blood drawn last week and have some results - but I do not have my PTH (parathyroid hormone) because - guess what - THEY PUT THE BLOOD IN THE WRONG COLORED VIAL.  So, I have to have it redrawn.  This is super annoying because my calcium came back below normal - not terribly below - but below - and that number is more meaningful to interpret along with PTH.  I'll pop in and have my PTH redrawn this week sometime while running to and from physical therapy (see update below) and the results will be helpful - but not has helpful as being from the same sample that showed low calcium.  UGH.  So, I'm being more disciplined about taking supplemental Ca on top of dietary Ca.  My scars have healed well from surgery so all is good on that front and I'll know more when PTH is available.
My TSH creeped up to 0.7 - figures since I stopped Tirosint and went back to Synthroid.  Tirosint is just plain better.  But Synthroid is good too.  I'm trying to decide if I should just stay on my current dosage or ask my endo who might up my dose and I prefer a TSH of 1.5...and I'm at 0.7 - already low - and more Synthroid will likely push it to the 0.4, 0.5 range.  I might just stall ;-)
I had my chiropractor X-Ray my back and my Spondylolisthesis (L4/L5 instability due to a pars defect and weakening bones, causing a half inch slip when I move, resulting in lots of pain) is ever so slightly worse.  I mentioned that to my PCP (primary care provider) and she ordered Physical Therapy (PT).  YAY!
Wait, why am I saying YAY to bootcamp??  Well, I guess because I know it's good for me.  My PTist said she could order water therapy - i.e. in a pool!! - which would be great.  That can get me into the local High School's pool in the winter months when my pool is closed.  So I'm looking forward to that game plan for next September/October when we close up our pool.
Basically the PTist says that I'm pitched forward for multiple reasons:  1.  My hip flexors are too tight and shortening - so we are working on stretching those.  2.  My back is unstable - we knew that - so we are working on core strength.  3.  My hamstrings and piriformis muscles are also tight - making it harder to stretch my hip flexors.  So the routine so far is 10 minutes warming up on a stationary bike, followed by about 50 minutes of stretching.  One hour.  Here's the kicker - I have to do this THREE TIMES A DAY.  So that means finding three hours each day to help myself stand up straighter and help avoid a back surgery.  So some changes are in order around here...like any TV time (I don't watch much but I do like to watch the news and a few shows) is now stretching time...and meals need to be easier to make.
Speaking of meals, my A1C came in at 6.3 - NOT COOL.  That's definitively pre-diabetes.  I've been here before.  Watch the carbs, take off 10 pounds (very hard to do, especially now with my daughter owning a restaurant 1.7 miles from my house), and more fruits and veggies (which my tummy doesn't like at all).
So, no more time to type - need to go stretch!!  In the meantime, there are many more folks out there with medical situations far worse than mine - so I offer up my chronic pain for all of them.

You can't make this STUFF up!!!!!

So...I'm still having symptoms of hypocalcemia - low calcium.  I wake with numb lips and tingles in my fingers.  I know it's minor hypocalcemia from the last blood test that came back below normal but not terrible.
First off, I was not taking enough calcium.  Mayo prescribes 5700 mg daily (or two 950 mg tablets, three times/day).  In the grogginess of post-surgery I miscalculated and was getting about half of that. It was my mistake.  So, I corrected that and was on the right dosage for a few days and thought I should re-check and Mayo suggested testing PTH (parathyroid hormone) as well.  So, one week ago today I went to the clinic and had blood drawn to test TSH, PTH and Ca.  Then the waiting started because this is not Mayo after all...
Monday, no results...Tuesday, no results but my TSH was 0.56 (that's good)...today they call me to tell me my Vitamin D3 results - 39.  Except they called me last week and told me that so I said "I don't need that result, I need Ca and PTH."  The reply "I have your Ca right here but can't give it to you over the phone and there's not PTH.  Let me check and call you back."  She calls back "Please don't shoot the messenger [never a good way to start a call] but your blood was compromised and they never tested your PTH."  I asked about the Ca - "I'm looking right at it but I can't give it to you over the phone.  But since you need to go to the hospital anyway to get PTH blood work done, you can sign a release there and they'll give you your Ca."
So, off to the hospital I went.  I had my blood drawn for PTH.  Everyone was super nice and knowledgeable.  I went to "medical records" and filled out paperwork to release my Ca results.  They hand me print outs of TSH and Vitamin D3.  "I am interested in knowing my Ca.  It was drawn on January 29th at the clinic."  They replied that they had no Ca in the system.  They walked me to the lab to see if the lab had the results and the lab showed me the order that was sent in:  PTH, Vitamin D3 (which was not to be tested) and TSH...no Calcium!!  Then they explained that they could not test my PTH because the blood had aged - after three days it's no good - the clinic left it there Friday, Saturday, Sunday, Monday and then the hospital lab got it and could not test it.
So, they suggested I have my blood drawn (second poke of the day - luckily I don't mind) right then and there and they'd hold it until the order for Ca got faxed over - saving me a return trip.  I thanked them, left my blood with the vampire lady and went off to the clinic.
I explained at the clinic that the hospital never got the order for the Calcium..."but we are looking at your Calcium results right here" was the reply.  I asked them to check the date.  "Oh, I didn't look at the date.  You are right, there's nothing from January 29th.  I'll fax the order right now."  I thanked them and left.
Now, my phone buzzes - I have an app on the phone that routes home voice mail to my cell.  I check it - it's a fax.  I open the fax - there's the order for the lab to test PTH and Ca - and they FAXED IT TO MY HOME PHONE!!!!!  Not to the hospital lab.  I downloaded it to my cell, called the hospital, asked for the nice folks in the lab...they shared their e-mail with me, I sent the order over and they acknowledged getting it.  By Monday, God-willing, I'll have PTH and Ca results.
So the clinic errors:  Drew blood left it sit 4 days.  Didn't order the right tests.  Looked at test results with the wrong date.  Faxed order to my home phone and not to the lab.  Geesh.
Now for the pharmacist rant...
950 mg of Ca times six tablets a day = 5700 mg.  The bottle they dispensed to me (Walgreens I might add) were tablets that contained 630 mg of Ca per dosage - two tablets in a dose.  So...my rudimentary math skills say that's 315 per tablet or needing to take 18 pills per day.  But alas no, the pharmacist tells the pharmacy tech to tell me (he would not talk to me, not even look at me) that I need to take 9 a day.  "You are off by half" was my reply.  Her reply back to me, holding up the prescription from Mayo "That's how your prescription was written."  OK, so by now I'm starting to get real Jersey if you know what I mean...forget Iowa nice or Southern charm..."Oh, I know exactly how it's written.  There's 315 milligrams of Calcium in each pill.  I need 5700 milligrams per day.  That's 18 pills.  You are off by half."  I said all this with my calculator app open on my phone, doing the math as I spoke.  She went back to the pharmacist who would not look at me, went to the shelf, grabbed another bottle and dispensed the calcium citrate.
I feel like I'm in some medical Twilight Zone where nothing happens properly.  I can't really get too mad at the pharmacist since I made the same error myself when looking at the Caltrate Petites and looked at dosage and not per pill.  However, I did that the day I got released from Mayo while still quite groggy - AND I'M NOT A PHARMACIST!!!  My math had me taking 15 petites a day and I should have been taking 30...it didn't seem possible.  But no excuses, I screwed up.  So did the pharmacist.  So did the clinic.
I guess I'm just happy the surgeon and the anesthesiologist did so great!!!
Enough ranting...count my blessings - offering it up for a brother named Steve in NJ who is dealing with some pain.

Calcium is too low!

The tell-tale signs of low calcium - tingles in the fingers and around the mouth.  I've had that for several days so I went to the local doctor for a blood draw.  My calcium had dipped to 8.4 (normal at the local lab here is 8.8 - 10.5).  So I called Mayo Clinic and they said it's low, not dangerously low, but must be addressed.  They asked if I was taking calcium.  Yes!  Lots of it!  But the source is calcium carbonate and they prefer I switch to calcium citrate which absorbs better.  The issue with the calcium citrate is I can't swallow the pills...even the "petites."  My neck is swollen from surgery and I got one of the pills stuck in my throat and had to hack it back up (sorry for the visual).  Mayo said I could grind them up.  So, I need to take just shy of 6000 milligrams of calcium a day - split up into three doses.  That translates into 15 Citrical Petites a day.  I ground up 5 of them and mixed it with applesauce and that was my appetizer before dinner.  I'll keep pushing the calcium.  If no change in symptoms, I'm to have the local doctor draw calcium and parathyroid hormone on Monday.  In the meantime, I'm feeling pretty well (except for the tingles).

Road map

The surgeon uses the ultrasound and sestamibi scan to make the surgery minimally invasive. Here's my road map images:

Details...

Wow! Mayo Clinic is a well run facility!

We reported for surgery at 7:30 a.m. Wednesday. Once in the pre-op room they had me put on a Bair Paw gown. We determined where 1960 hairdryer technology went! It gets hooked up to a vent system in the Bair Paw gown so you can keep cool or stay warm. It puffs up and I resembled Bebendum...the Michelin Man. I turned it off and opted for room temperature.

Next two IVs were started...flawlessly executed. We waited. The people in the room next to us were debating on Democrats for presidential nominee. We had our own debate on Republicans. Finally I was taken to another pre-operative area where I was on my own. Everyone I encountered was fantastic. I did my usual pass time of praying for the other patients around me...figuring my woes were minor compared to theirs.

My surgeon popped in and we chatted. The anesthesiologist came in and we reviewed his game plan. He had me swallow pain meds right then...never took them pre-op before.

Then it was off to the ER. There was an entourage of people. I met everyone. Next thing I knew I was drifting off to sleep.

I don't recall my time in the recovery room, nor my trip to my hospital room, nor my first nurse...whom Bob said was excellent. The surgery lasted about an hour. The diseased parathyroid was removed and a sliver of it auto-transplanted into my chest...an insurance policy if my healthy remaining parathyroids don't kick in. I had zero nausea...a first...the other 8 surgeries I was pretty sick. 

The second shift nurse was an amazing guy. I got to snack, then eat a light dinner, and the drug cocktails kept showing up...lots of Tylenol, Tramadol, Calcium, Vitamin D and some Oxycodne.  Bob left around 8pm. I rested and was up from 11-5...watched Wall-E on the Mayo movies on demand channel.

I checked my blood work results:

You can see that during surgery my PTH dropped from 78.8 to 19.6.  It fell further Thursday morning to 8.4. Cure is determined by normal calcium at 6 months...but it's normal now and I have a detectable PTH! The doctor was thrilled and she released me to go home Thursday.

We stopped for lunch on the way to dear Deere friends in Cedar Falls, Iowa where we spent the night...after a nutritious and delicious bowl of chicken soup!

We finished the drive home Friday... I slept a couple of hours in the vehicle, listened to David Bowie music, listened to post-debate coverage on the Sirius news channels, made a few phone calls, checked a few emails and chatted with Bob.

How do I feel? Pretty good, considering! My voice tires easily. My neck has some swelling and pain. My ears are ringing from the supplemental Calcium. I seem to have less muscle aches and little to no back pain...but that could be from the pain meds.

The window to rebuild my bone mass is the coming year...up to six years. I plan to reverse the osteopenia and fend off the osteoporosis. My pre-op visit also showed borderline pre-diabetes...so back to the Mayo Clinic Diet! I also need to supplement Calcium for a month then switch to dietary Calcium as I see fit...so long as I get 1500/day.

I saw the photo of my adenoma (the diseased parathyroid) while I was still at Mayo. It was 1 cm across. I'll post the photo when I see it appear in my patient portal.

Now a few days of rest and recovery. Life is good!! Thanks for the prayers!

Doing well!

Surgery was a success! I feel well and I'll post details later this week/weekend.

The night before...

Today was a busy day...the scariest part was the vocal cord exam. I started by doing blood work in the "sub-way" level of Hilton, where the tech told me that there's a tube that carries blood into "central processing" from both hospitals.  BOTH hospitals - remember that the Methodist Hospital is connected to the Mayo Clinic by the sub-way system (no trains for you Easterners - just an underground level you walk through to protect you from the cold).  But, St. Mary's Hospital is across town over a mile away!!  You could hear the tubes arriving - sounded a bit like the bowling alley when the system resets the pins.  My blood (and they took enough for several hungry Vampires) traveled via conveyor belt to central processing - the whole clinic is a smooth operating model (not operating as in operating room, but as in Operations Management 101).
Next was the pre-operative clearance where an EKG strip of the heart is needed.  Flat T-Waves - I knew that and my heart has always had flat T-Waves.  The doctors were not at all concerned since we chased that anomaly down a rat-hole years ago.
By this time I was starving, so I bought a fruit cup which I did not eat and went to the Vocal Cord exam on the 12th floor of Gonda.  I asked there if I could eat it and they advised not to, since I would be "scoped."  I was nervous about this scope - up the nose and down the throat - to look at my vocal cords.  Why look?  Because I'm a "re-operative" case - I've had prior neck surgery which can damage the nerves to the vocal cords.  The surgeon wants a baseline on how much damage I have - if any.  I told the doctor (she was lovely) that I was likely unnecessarily nervous - she said the entire procedure takes under one minute and that calmed me right down!  Plus they numb your nose and throat - the worst part is the stuff tastes awful!  Very bitter.  So they squirted the stuff in and I also said "by the way, I have a tendency to get nose bleeds."  Remember this magical statement should you ever need this done because she turned to her nurse and said "go get the pediatric scope."  YAY - the kiddo scope!!  Much thinner than the adult version.  She showed it to me and said "see it's like a strand of spaghetti."  Spaghetti MY ASS!  I'm Italian - there is no Spaghetti on the planet that is that thick!!  Bucatini maybe - but that was no Spaghetti.  She carefully inserted it up the nose - that part I could feel, but it was not painful in any way - just odd.  I could not feel it at all in the throat.  She had me make a high pitched "EEEEEE" sound and then "breath in slowly through your nose as if you are smelling flowers."  She said everything was working normally and looked good.  I'd say it took 45 seconds, if that!!  She recommended a few brand name items for nasal dryness:  Ponaris - Nasal moisturizer, natural decongestant and XLEAR - nasal cleanser that is moisturizing.  She prefers both to Saline and said the Ponaris has a pleasant Vicks-like smell.  I bought both at the Mayo Store after lunch.
I ate my fruit cup at 10 a.m. as I basked in the sun by the window - very warm, given it was about 2 degrees F outside (that's -17 degrees C for the Celsius crowd).  Off to the Endocrinologists office.  He reviewed everything and answered all my questions about the diseased parathyroid and talked glowingly about the surgeon.
After a walk through the sub-way and the sky-way system in search of lunch, it was time to meet the surgeon - she entered with her entourage.  My Endo arrived to introduce her, along with her resident, her visiting surgeon from Massachusetts and her nurse.  The room was crowded!!
Here's the game plan:

• Call the "hot-line" after 8:15 tonight (but before Midnight) to find out when surgery is tomorrow - yup - I have no idea when it will be until I call the "automated line to receive instructions." (Update: I called and have to report at 7:30 a.m.)
• Anesthesia will be general (yay!!)
• Surgical approach will be minimally invasive
• Location of incisions (two) will be just above my thyroidectomy scar and to the left, and on my upper chest (more on that later)
• No other glands will be observed (we have 4 parathyroids, she will enter, remove the diseased one and sew me up - no hunting around due to significant scar tissue in my neck - my case is known as a "reoperative" case)
• She'll provide a photo of the adenoma (YAY for the U.K. crowd)
• She uses a vocal cord nerve monitor during surgery (cool!)
• She will remove any reactive lymph nodes she observes due to my history with thyroid cancer

She will take a piece of the diseased parathyroid and auto-transplant it into my chest, near the surface of my body - the reason is fascinating:
There are two worst case scenarios - the first is that she can't find the adenoma at all and sews me back up and sends me home.  This is unlikely since we have it on a sestamibi scan and an ultrasound - so we have a "road map."
The second is that she removes my diseased parathyroid and we discover that it was the only working parathyroid I had...so, as an insurance policy she puts a small portion of it into my chest which will start to work in 4 weeks.  The other parathyroids should start working again sooner than that...hopefully right away...but just in case I'll have the one in my chest as insurance.  If that one, since it's diseased, continues to cause issues in the future, it can be removed in a clinic visit, right in the office.  Brilliant!
All in all I was super impressed with the surgeon and her game plan.  She answered my laundry list of questions before I even had a chance to ask them!!  She does thousands of these operations and is an expert in reoperative cases.
So the schedule:

• Wednesday - Surgery - time TBD later (7:30 a.m. check in)
• Wednesday night - stay in Methodist Hospital
• Thursday morning - monitor blood calcium and PTH hormone (which will also be monitored intra-operatively or ioPTH) - if both look good, I will be discharged to go home.  If I have any symptoms of low calcium, I am to stay in the area one more night and go home Friday.

I'll need to supplement with Vitamin D and Calcium to rebuild bone mass - the goal of this surgery is to reverse the incipient osteoporosis (as well as get rid of the bone pain and the ringing in my hears, etc.)
I'm ready!!

Rochester...it's cold here!!!!!!

Tomorrow:

Blood work at 7:30

EKG at 8:40

Vocal cord exam (dreading this) at 9:30

See endocrinologist at 10:30

Meet surgeon at 2:30...

Paratrooper

All of us who deal with parathyroid issues are paratroopers in the war on parathyroid related diseases. In preparation for surgery at Mayo Clinic next week, I've had to give up my Aleve...I take it twice daily and occasionally another one mid-day if the pain is really bad. Oh how I miss it!! It's hard to type - hand pain - like my hands are 80 years old. Other bone pain that's awful is leg, hip, rib cage, shoulders and upper arms. What's left? I guess I can honestly say that my right big toe does not hurt. :-)
THANKFULLY I have work to keep me busy. I can honestly say that when I'm working, I don't feel any pain. I'm not sure how that works - but the distraction of thinking about what I'm focused on (people on the team, spreadsheets, PowerPoints, the meetings I'm in, etc.) seems to block the pain rather well. It's an interesting phenomenon and one that I should learn more about. Nothing else really blocks the pain other than doing some small crafts. I did lots of painted snowmen and Santas for Christmas - made them out of clothespins. As I sat and painted, I really found that the focusing on the details of the artwork made me not feel the pain. The pain is still there - it's just muted.
The downside is the rest of the time...ugh. I'm thinking that many people who deal with chronic pain such as fibromyalgia, should get checked for hyperparathyroidism and elevated calcium levels. I also think anyone with chronic ear ringing (tinnitus) should get checked for elevated calcium levels. The more I learn about this illness the more I start connecting the dots to what lots of people are going through.
Changing subjects, my Endocrinologist called me personally today from Mayo Clinic to tell me that my insurance will no longer pay for my Tirosint. Boo insurance company! Tirosint competes with Synthroid and contains just four ingredients: T4, glycerin, gelatin and water.  Synthroid contains T4, acacia (a gum that emulsifies), confectioner's sugar (??), FD&C Color Number (varies with pill), lactose (milk sugar), magnesium stearate, povidone (synthetic polymer that's used for dispersing and suspending drugs), and talc (as in powder). I like Tirosint - it helped me lower my dosage and I am able to see the scale budge when I diet - never see that with Synthroid. So...I'm switching back to Synthroid and my Endocrinologist will go to bat for me if necessary - but I'm going to try with Synthroid again...it served me well for many years so I really can't complain too much.
I'll update as the date gets closer - likely after I've seen the Endo and surgeon the day before surgery...

Mayo Clinic Countdown

I've never liked having surgery. However, this time around I am really looking forward to my parathyroidectomy.  You can read more about HyperPARAthyroidism at http://hyperparathyroidukactionforchange.blogspot.com/.  I have 20 of the symptoms listed on the right hand side, with 7 of them being life altering.  I hope to reverse this disease progression with surgery - thus the anticipation!

I don't feel that I'm in the best of shape for surgery.  I'd like to be 30 pounds lighter and in better shape.  Exercise has been a challenge when it's painful to just walk.  But the weight part of it can be addressed.  I've been making my regular donation to Weight Watchers for years and I call it my "weight maintenance plan."  The scale does not budge on WW and it was time to switch things up.  So, for the first time in years I actually stopped making my monthly payment to WW, removed the app from my phone and I've lost 6 pounds!  I switched to the Mayo Clinic Diet.  I figured they have not failed me yet - so why not give their system a try?  I'm not wasting away - trust me - but at least the scale is going in the right direction...and in the weeks between Thanksgiving and Christmas - that's an accomplishment if I do say so myself ;-)

The HyperPARAthyroid UK Action for Change support group has been just that - SUPPORTIVE. I'm lucky to have found them and it's been very reinforcing and very inspiring.  The reinforcement is that so much of what I experience (especially the bone pain) is real and very much a symptom of this disease.  It's nice just to not feel alone in the process.  The inspiring part is reading the stories of others who had the surgery and their wonderful outcomes.  I can only hope and pray that I do as well.

Merry Christmas to all!!

Disease progression - headed to Mayo Clinic

Well, the symptoms of the hyperparathyroidism are worsening. Spending two days a couple of weekends ago not able to work or move without being in extreme agony really made me question Mayo's idea to "watch and wait." When I sent the list of worsening symptoms to the doctor (listed below), I had a reply within 6 hours with surgery scheduled for January. FINALLY! God willing it will be a quick surgery (should last about 30 minutes) with a quick recovery (should be about two weeks).
Symptoms:
· Fatigue
· Generalized muscle aches that sometimes are quite bad – I call those time periods “flares” for lack of a better term
· Bone pain – especially in the hips, rib cage, arms, shoulders
· Right side flank pain (kidney pain)
· Sudden development of micro-cavities in my teeth (I never get cavities!!)
· General weakness
· Slightly worsening mood – mostly because I’m in so much pain and can’t do the things I would like to do - most of the time I remain upbeat and positive...but it's frustrating
· Constipation (I know, too much information - but it's a reality for us with Hyperpara)
· Osteopenia (pre-curser to Osteoporosis - significant bone loss)
· Tinnitus - I just learned that elevated blood calcium causes ear ringing - and mine is severe and sometimes impacts my ability to hear and sleep (just ask Bob).


If the surgery is successful, it literally reverses the bone loss! I'm on a Facebook support group for Hyperpara out of the U.K. and so many have said they wake up from surgery with no bone pain. WOW. I've been living with thyroid cancer for nearly 20 years and the pain of hyperparathyroidism is 100 times worse than anything I have had from thyroid cancer.


For those of you wondering, the parathyroids and the thyroid are not at all the same thing - they just hang out in the same neighborhood - the neck. In my case, when my thyroid was removed, one parathyroid was removed also - the surgeon found it and reinstalled it into the muscle wall of my neck. So technically I still have all four parathyroids. One of them has grown an adenoma or a tumor on it which is pumping out excessive parathyroid hormone. My theory is that this is due to significant neck radiation so I do blame the thyroid cancer for this part of my life's journey.  Parathyroid hormone controls blood calcium levels - mine are elevated thanks to the little adenoma. Since a "bad signal" is being sent out into my body that I need more blood calcium, it's leeching calcium out of my bones and teeth to satisfy this need. Dietary calcium adds to the bone pain.

As with every medical adventure, this allows me to give back!  I'm getting more involved with the hyperpara group out of the U.K. (they are far ahead of us with this disease in the U.K. vs. the U.S.A.) and I hope to bring more awareness to it around the world!

For a great (one hour) seminar on hyperpara - click here: http://endocrinesurgery.ucla.edu/webcast.html 

There's much to be THANKFUL for - Happy Thanksgiving everyone - gobble gobble.