SO MUCH HAS CHANGED

So much has changed since I last wrote. Unfortunately, mostly downhill with some ups and downs. As the weather grew colder, I started to have muscle and joint pain. It's pretty much everywhere. I also have had ongoing issues with my posture. I signed up for physical therapy through Hinge Health and it's helpful, but not enough. I've also had fatigue.

For the fatigue, I went to my PCP and she did blood work. Based on the results, she recommended stopping my Pravastatin (for cholesterol) since my blood work looked so good in that arena. She thought the statin might be causing the fatigue. I stopped late November. My late December I was a mess. Pain e-v-e-r-y-w-h-e-r-e. Rolling over in bed is painful. Walking hurts. Standing hurts. Muscles hurt. Joints ache. It turns out that Pravastatin offers some whole-body anti-inflammatory properties. So my inflammation levels rose. Blood work also showed elevated ANA, RF and Sjorgen's anti-SS-B. None are high enough to point to a diagnosis, but all are elevated enough to indicate wide spread inflammation.

My new Rheumatologist (in Wichita - I like him) suggested Tylenol around the clock, not exceeding 3000 mg. It's helping. Eating clean helps. Movement helps (and hurts - double edged sword). Getting adequate rest is key, but over-resting leads to aches. 8 hours of sleep is just right - and hard to get many days. Heat helps. Cold helps. Everything that helps takes time and commitment.

A repeat cholesterol test showed I needed to get back on the Pravastatin, so I'm back on at a half dose. Hopefully that will help with inflammation. I see the Rheumatologist again in 3 months.

In the meantime, I had a chest CT (routine follow up for Mayo Clinic from the open thoracotomy). I had that appointment with Mayo today - virtually. It's 90% good and 10% "need to be watched." There are lung nodules on the right. Probably benign. But (there's always a but) they need to be watched. So, six months another CT. Since I have to have a follow up for my bone health and hyperPARAthyroidism history this coming Summer at Mayo, I'll likely do that CT up there. It's so funny (not funny) the difference between locally and Mayo. Locally they looked at the same exact images from the CT and they reported one small nodule. Mayo sees three. Of course, the radiologists at Mayo are better...so I'm trusting them. One nodule was seen previously and is stable (good thing). The other two nodules were not seen before and could have been hidden by the large mass that was removed in June. So, I'm thinking good thoughts and praying this is all stable.

In the meantime, I'm hoping my school is able to find a new Principal so I can shift from Interim Principal to volunteer mode next school year (and have more hours at home to work on my health). We'll see how that goes. Please pray the right people apply - the job is posted. The school deserves a credentialed Principal.

I remain very active, in spite of the pain and discomfort. I tend to muscle through. My pain and health issues are NOTHING in comparison to what others are facing. I offer up my pain for them. On a personal note, we lost our Tazzy (Norwegian Elkhound) in December. We're still recovering from that loss - he was a special boy. Mystique (Shiba Inu) is 13 now and slowing down a little. A bouncy flouncy 4 year old Norwegian Elkhound joins us here in a few weeks. I'm looking forward to the activity he'll bring to our lives. Prayers for all of you who read this.

A Sense of Normalcy

This post is rather specific. It has a specific "audience" - they know who they are.... Yesterday (Friday, August 1st) brought a sense of normalcy to my summer. I was surrounded by wonderful colleagues (where I'm so humbled...). By the hand of God, I found myself helping a small Catholic school and it's been a joy to immerse myself with others who share the same faith tradition. Attending the Pastor Principal Summit brought a sense of normalcy yesterday. It's funny, because last year at this event, I was mostly terrified...out of my element, not knowing many, asking lots of questions. Now, gathering with this group is something I look forward to, and I had to miss a meeting earlier in the summer due to surgery/scheduling/travel, etc. I honestly didn't think I'd go yesterday. I kept thinking I wasn't strong enough (and I wasn't). But last week, something shifted in my healing journey (thank you Jesus) and I thought "I can do this" with some accommodations. A shorter day and riding with my Pastor allowed for me to attend. Just not having to hold a steering wheel for 4+ hours yesterday was a gift. Father is likely still recovering from all the jabbering I did on the ride home. ;-)

I'm writing this specific post to say THANK YOU. Thank you for the prayers. Believe me, I felt them. There were many moments of warmth, love and support that I literally could feel. The power of prayer is amazing, and real. I could write a book about all the healing we've experienced, just in our family, from the power of prayer. As documented in a book by Dr. Larry Dossey (Healing Words: The Power of Prayer and the Practice of Medicine), prayer is amazingly important in our medical journeys...even the ones where some don't survive and transition to our time with the Lord. For the many folks who sent cards - THANK YOU. Bob would go get the mail, and often a card from one of you beautiful people was mixed in. It brightened many of my days. THANK YOU for the warm welcome yesterday. It felt so normal to sit among you (until Janet put my photo up on the big screen LOL) and take notes, learn about the upcoming year, hear testimonials from many of you and so on. I had a bunch of one or two word triggers on my paper that were discussion points for our ride home. Yesterday was productive and NORMAL! Thank you for the hugs, the hand shakes, the smiles and again, your prayers.

In my own prayer life, I do try to focus on praying for those who are praying for me! I will offer up prayers for all of you specifically today at the 4:30 Mass. I will continue to pray for all of you...administrators, superintendents, support staff, clergy and all of you who focus on educating our youth! What a joy to be a part of this. Love you all. dj

Mayo Follow-Up Was Today

Well, today was an important milestone in this journey. It's my six-week follow up. The news is good! My x-ray shows I am healing well. I'm released for most things...I'm to listen to my body and not do anything that hurts...so still no heavy lifting. And still no swimming because of a small scab that is yet to fall off.

Pain: I'm supposed to start to wean myself off of Tylenol. I'm to go from three times a day to two. Ice packs are recommended. It's normal to feel all sorts of weird pain and numbness, pressure and tingling, stabbing and weirdness - because of the intercostal nerves that were cut. She mentioned rest and fuel - getting good rest and eating right.

As for the biopsy and the follow up...the darn tumor was huge and classified as high risk due to size, my age, the necrosis and whatnot. But, the verdict from the expert, now that it's outa me and has been reviewed in the lab, is that this is a benign tumor. HOORAY. Now, before we all get too excited, these solitary fibrous tumors of the pleura are their own category of tumor and they can recur. However, that's not anticipated...yet it requires surveillance. So, into the CT machine I will go in six months. I'm glad I'm not claustrophobic. I just lay in there, say my prayers and we're done! The good news is that I can do that locally and send it to Mayo and meet virtually. This will establish a new baseline of what my lungs look like and we'll go from there. This is good because six months from now is January...and Rochester, Minnesota (MinneSNOWta) is not fun in the winter.

Funny things hurt or feel weird. Writing in cursive (signing my name) hurts. Go figure. Slicing food with a knife can hurt if I don't press my arm against my side. I do have pain in my throat which is scar tissue from being intubated and that should improve, but it takes a long time. Reaching is an issue, but it's improving day by day!

Now it's time to work on emotional healing too. It's daunting to think about being sliced open, ribs broken, someone (multiple someones because I know at least one medical resident was working on me) reaching in there, removing the resident alien (good TV show) and putting Humpty Dumpty back together again. Sometimes I think about generational medical trauma. Mom's side: My great grandmother was a diabetic and had medical issues. My great grandfather had a ruptured appendix that took him early. My grandmother had her gallbladder removed and apparently suffered greatly around that time of her life. My mother had her appendix and one ovary removed at 16, a major fatal car accident (I was in that one too) when I was 7, a cerebral aneurism and metastatic breast cancer. Dad's side: My grandmother had skin and stomach cancer. My grandfather had Alzheimer's. My Dad, who is living, survived prostate cancer and melanoma skin cancer.

My Mom, who lived to 80 in spite of it all, always told me "we are great at healing." True statement. But, admittedly I'm tired of this healing business (although it beats the alternative) because this is surgery number 11 for me. It's a lucky thing I don't drink very much and don't do drugs because I can't imagine how many brain cells have been sacrificed via anesthesia 11 times!! I fired my local PCP and switched providers. I showed up with my list of surgeries, along with the reasons why, and she looked at me and said "you've been through the ringer." Yup. The only problem with that statement is that if I truly were put through a ringer, I should be a lot thinner (LOL LOL). I thought for sure I'd lose at least two pounds when the resident alien got evicted...but I've gained that back...so the universe is still in balance. Ha!

Speaking of food...it's time to go feed the dogs. I'm able to walk both of them, together, like I used to do before surgery! They are old dogs...12 and 15...so they don't pull much. Then it's time to feed us...I'm making a pasta salad chuck full of the garden cherry tomatoes that Bob grew! Light on the pasta, heavy on the veg! Plus, I boiled the pasta and cooled it, making it a resistant starch. Tomorrow lunch with dear friends and life goes forward!

God bless you all.

Random Update

Can you believe that today it's 5 weeks since surgery?? I can't. In some ways it still feels like it was yesterday. In other ways it seems like many weeks ago.

I still tire very easily. Rest is key to healing. For pain, I only use Tylenol. I was on Celebrex anyway, and that continues. I occasionally use Lidocaine cream to numb the incision. Pain hovers around 2/10 when just doing nothing and rises quickly up to 4/10 if I do something that my body doesn't like. Reaching down to pick something up off the floor = 5/10. Shopping at Wal-Mart - bad idea! I did a short shopping run (about 5 items). Pushing a cart, reaching up to a shelf, putting things in the cart, up onto the belt, and then moving light weight shopping bags into the car...not a good idea. That activity was around 4/10 and wiped me out. Riding in the car, with Bob driving, is okay for short distances. We went to the Peach Barn in Porter, OK (great peaches!!!) for a day trip and it was rough. The action of holding myself up in the passenger seat and bracing for potholes, road debris, etc. - that was challenging. So short trips for me for a while. Going to Independence (25 minutes away) is about my max right now.

I've started a weekly process of Mass on Thursday mornings then going to the school. Smaller daily Mass means less risk of catching an upper respiratory infection. Two Thursdays ago I went to the school for a couple hours, went home and went straight to bed. Last Thursday I went to the school for a couple hours, came home, made lunch, did a few things, chatted on the phone but then needed a nap. This week I'm switching to Friday and we'll see how it goes.

I'm able to walk both dogs now. The bigger one (45 lbs) is 15 years old and doesn't pull much anymore. If he does, I'll just step on the retractable leash and tell him to sit. So far, that's not been necessary. I've been walking the little one (21 lbs) since getting home from Mayo. 

The biggest news is the increased lung capacity. Before surgery on the incentive spirometer, I was at 1500ml and worked my way up to 2000ml...but it was work. Now, I pick it up and immediately am at 2750ml. My left rear kidney area no long aches (I think that was the tumor pressing on things). Of course, that ache got traded for the pain of two broken ribs and incision pain...but the tumor is gone so it's a good tradeoff!!

I fired my PCP and found a new one! I see her next week. I also see Mayo next week (virtual) and hope to get cleared to swim. So far, they've said no. I emailed them photos of my incision and they said "not yet." It must be completely scab free, and I'm not there yet. But it does look amazingly well.

Resting has allowed me to get caught up on The Chosen, Resident Alien and Transplant - three series that I really enjoy. I still can't read anything lengthy - emails are fine, but books are not. And we watched the movie about the Nonnas and their restaurant on Long Island. Cute.

The joys of kinesiology tape - helpful. I tried wrapping my ribs and it felt really good in the front, but irritating in the back. Yes, I had permission first from Mayo. So I tried KT Tape just in the front and it helped with some of the ache. It's hard on the skin...so I don't use it daily...just now and then when I think I need it. Wal-Mart delivery is a life saver. Groceries show up at the front door - even in little ole SE Kansas.

This week is busy with an activity each day. Building stamina is key. Rest is key. Eating protein is key. I'll update more next week after chatting with Mayo. I'd like to more fully understand the genetic testing done on the tumor and the "high risk" nature of it - what does that mean for follow up? What does that mean for recurrence risk? I did join a Solitary Fibrous Tumor support group and learned how blessed I am. Several others with my same diagnosis have had complications because the darn thing burst before it could be removed intact. When I say "complications" - I mean having to do chemo and radiation. So far, I've been blessed with this pomelo sized thing "popping out" intact and a clean 1.3 cm margin. Thank you Jesus! But I still have questions for Mayo - mostly about surveillance and what the plan is for that. I'll keep y'all posted.

Please pray for a smooth start to the school year. I've got several nasal sprays that are supposed to help ward off germs. I've got a pure copper "swab" for the nose that kills germs on contact. I hope to use these daily to help stay healthy. I will mask up now and then, but masks a. are warm and uncomfortable and b. not ideal for interacting with other humans - especially the kids. Facial expressions are so important - especially smiling!! This last school year I had four major respiratory infections (one was COVID). I'm hoping I built up some immunities and this year will be better. And yes, I'll get a flu shot (assuming Mayo says I can).

Love you all.

I drove today!

Mayo said if I'm off narcotics (check) and if I can safely turn my neck to look at traffic (check) and if my pain is managed (mostly check - later in the day it hurts), then I can do some local driving. I drove to my Dad's place and helped him with some financial tasks. I for sure wanted to go slowly...so apologies to anyone behind me. It was very "freeing" to drive.

Baby steps. Tomorrow I'll go to morning Mass. :-)

John 15: 1-2

“I am the true vine,

and my Father is the vinegrower.

He removes every branch

that does not bear fruit,

and every branch that does

he prunes to make it bear even more."

I was watching Season 5 of The Chosen and Christ's words from John 15 really hit me hard...in a good way. The now evicted tumor was not bearing fruit. It was a branch that needed to be removed. How blessed am I that the Great Physician was able to work on my mortal body through the hands of the doctors at Mayo? I am blessed. Yet, I keep thinking about what got us to this place...certainly it was the Holy Spirit. 

Why did I come out of retirement to serve Holy Name Catholic School? It was the nudge of the Holy Spirit. Why did being surrounded by kids lead to so many upper respiratory infections? That wasn't the Holy Spirit (it was germs), but the Spirit kept nudging me to ask "why am I getting so sick?" Even an X-Ray (which clearly shows the tumor in November 2024) being mis-read didn't stop me from continuing to ask "what's going on with my lungs?" That nagging push was certainly the Holy Spirit. The suspicion of a thyroid cancer recurrence was also a gift from God. It took me to Mayo for testing and treatment (we canceled the treatment since I didn't have a recurrence) where the solitary fibrous tumor of the pleura was discovered and properly diagnosed. All this was at the hand of God...the vinegrower. 

Today marks 3 weeks from surgery. I was able to put away laundry today (slowly, one item at a time). I dusted our bedroom furniture (nothing up high), slowly. Those basic chores took a few hours and wiped me out. So, there is much healing yet to do and stamina to build. I'm able to sleep on the incision...it hurts, but it's counterbalanced by the fact that I sleep better on that side.

This week I may try to leave the house...maybe go see my Dad at his place, maybe attend a daily Mass, we'll see. I can't drive...so it's not entirely up to me. 

God is good!

Done with narcotics

I stopped using the Oxy two days ago. I was only using half of the 5mg tablet, twice daily. It was easy enough to stop. I'm also no longer using the muscle relaxer at night. The reason being I was tried of feeling like I was down 20 points on my I.Q. during the day. Getting off the Oxy and the muscle relaxer makes me feel so much more alert. The downside - it hurts some. To be fair, it hurt before too...just duller. Pain is pain...and it's annoying.

The biggest downside to the pain is that it robs me of concentration, making it harder to pray and nearly impossible to read anything at length. I can read emails, articles, etc. I can't read a book. TV is my friend - I'm enjoying catching up on a few shows. It's relaxing and doesn't require concentration. For prayer, relying on the formula prayers is helpful...but not my preferred method of prayer. But it works! Turning the pain into a prayer (trick I learned from a friend years ago - thank you Doris in Heaven) is also helpful.

The pain seems concentrated to two areas - the incision on my back and the rib that raps around to the front from the incision area. Lidocaine patches help some. Ice helps some. Pain worsens as the day wears on...so evenings are difficult. The pain also affects my appetite (takes it away), so I have to remind myself to eat. I'm rarely hungry, thanks to the pain. Eating protein is essential for healing.

Healing is slow...day by day. Then I remind myself "hey, surgery was literally two weeks and two days ago - cut yourself a break." Sigh. I'm not a patient patient. ;-)  The search for a new PCP is helping pass some time. I have calls to make, etc. My follow up with Mayo is set for July 24 via Zoom. I have to do a chest X-Ray a week prior - I have an order for that from Mayo since I won't use my soon-to-be-fired PCP. I hope to have a new PCP by the time I meet with Mayo - that's my goal.

I'm able to walk my smaller dog. She doesn't pull and she's small. The bigger guy is a different story...I can't handle him yet - it will be a while before I can try that. Weeks for sure. 

I'm humbled by the prayers, cards, support, food, deliveries and such that have been part of my journey. Love to all of you! I'm grateful to Mayo for their holistic approach. My biopsy results are actually final and shows a high risk spindle type tumor for the solitary fibrous tumor of the pleura with good margins (yay). The nodules on my diaphragm were an inflammatory response to having the stupid tumor sitting on top of it - but it hadn't invaded (yay). The dumb tumor was necrotic (dying) in parts - so I'm just so happy it was evicted! My breathing capacity is back to where it was before surgery, so that's good. Now I need to build up a bit more capacity since I got some volume back with the tumor being evicted. That will take time. I wish I could swim...I'm sure it would help...but no submerging of the wound for 6 weeks...so that means four more weeks at least.

I'm doing some work to keep my mind sharp, but just a little. Most of the day is dedicated to healing. I'll update the blog again when there's something to write about. :-) 

P.S. I sneezed a couple of times and it didn't hurt like that other time. It hurt, but manageable...so things are definitely improving.

Setback

My surgeon's nurse reminded me yesterday that healing is not linear. I reached out to her yesterday after an unexpected sneeze wrecked my day. I've never felt pain like that...easily 7/10 on the pain scale. After wailing, crying and trying to catch my breath, I took an Oxy a few hours earlier than I'd hoped. 

The pain took away my appetite (I ate because it was a good idea to eat). It took away my focus. It caused me to be guarded, so as to not feel anything unnecessary. It moved my resting pain up from 1-2 to 3-4. One stupid sneeze. Ouch. A reminder that two of my ribs are broken. A tumor 4.5 inches across was recently removed. A wedge of my lung was taken. Numerous biopsies were performed on my diaphragm. I have a 12 inch incision. I'm human.

The nurse suggested bracing myself with a pillow before sneezing...great idea if I was sitting near a pillow...but I was at the kitchen counter, cleaning strawberries. 

Today I'm moving slowly. I'm still down to two Oxys a day, but added the muscle relaxer for nighttime sleep. As a result, my IQ feels about 20 points down. 🤔 I'm groggy.

Today is a new day...

Healing

Each day I rise, shower and feed the dogs (I can't walk them). I'm also tapering down the Oxy...I am tired of feeling sweaty and mentally slow (😉 slower than usual). My collection of bruises from IVs and Heparin shots are slowly healing. Here's the biggest one (see photo). 

A dear friend visited yesterday, others brought dinner (yummy!!!) and the kids were at the table for dessert. Our son goes home today. Yesterday I was wiped out. Two steps forward...one step back...yesterday was a step back in terms of fatigue and overall pain. Today's focus will be prayer, walking, PT and pain management (and Star Trek).

The Going Under & Waking Up

Let me start with this: I'm home!!!

This part of surgery often represents the most frightening part for new patients. Having just completed surgery number eleven, I thought I'd write it all out as a help to someone else in the future...and for anyone who is curious. 

The night before surgery I showered with Hibiclens. I slept in clean sheets and clean PJs. I washed my hair really well, twice. I wear my hair very short but had the undercut even shorter, knowing this would help me later in the week. I drank Gatorade and water for as long as I was able per the schedule provided, then gave up all liquids as instructed.

We reported to the hospital as told (6 a.m.) and were taken back to the prep area. I changed into my warming gown and hospital socks. I didn't put the hair net on until the last minute (itchy). Warm blankets were just a request away, so I never felt chilled. I met with lots of folks...my pre-surgical prep nurse was amazing. He had me laughing, a lot! A surgeon from my surgeon's team. An anesthesiology nurse. The lead anesthesiologist. I was able to voice my concerns about nausea and vomiting after surgery. They worked their magic and I had none!! In the midst of all this, an IV was started and blood was drawn for a study I agreed to be a part of.

After a while it was time to go to the OR. Bob went to a waiting area, but didn't need to stay there since he was signed up for automatic texts. He was able to get breakfast, take a nap, walk, get lunch and make it to my room before I got there after surgery.

As for me, I headed off to the OR, now donning the hair net. Operating Rooms are cold. Those warm blankets came in handy again. The switch from the gurney to the operating table was interesting. A hoist lifted me with some webbing that was underneath me and deposited me onto the operating table. OR tables are narrow. I met lots of people and they assured me they were smiling behind their masks. They said I would see my surgeon after surgery so I asked them to deliver messages:

Ask him to look for my metabolism while he's in there...mine's been lost for years. [That got a few laughs].

If he wants to remove extra fat, feel free! [I suspect they hear that one a lot.]

About now they let me know I would feel a little loopy. After that things are fuzzy. I recall them having me roll onto my left side. I remember them starting the epidural and it hurt quite a bit. After that I was under the effects of the anesthesia and I don't recall anything!

Next I was in recovery. I recall a lot of pain but it's a fuzzy memory. The anesthesiologist said something about the epidural not working and he wanted to re-do it. I recall an uncomfortable feeling but not as much as before surgery. Shortly after that the pain was gone.

I have snippets of conversation that I recall, but it's not even accurate information. I vaguely remember being wheeled into my hospital room, but it's more sounds than images. Bob says he greeted me and was asked to step outside while they got me situated. 

Getting situated is not easy. Out of my right side was a chest tube, hooked up to a box with light suction. I named the box Kirby (a brand of vacuums). Center was the urine catheter (I named the bag Orville...which was inspired by urine translated to Spanish) which was placed to my left since Kirby was on the right. Then there was the IV in my right wrist. On my left wrist were two other IVs. One took blood pressure readings during surgery. The other was there for reasons unknown. Additionally, there was the epidural onto my thoracic spine, taped into place securely, but represented yet another "line" that needed to be navigated around. Add to this the pulse oximeter on my finger that measured oxygen saturation levels and pulse rate. But wait! There's more! The oxygen cannula in my nose. Oh, did I mention the pumpy things on my legs to prevent blood clots? Moving was a big deal. Getting from the bed to the chair meant everything had to move with me. It was quite the site! 

After getting me situated with all this, Bob came back into the room. I don't recall a ton of information from that first afternoon. I do know I stood up and moved to the chair, with help. I know Bob ordered me dinner (no idea what) and I know I ate while seated in the chair.

I started to become more alert and I had my pain mostly managed by the epidural. Sleep was elusive because every hour or so someone comes in to check on things. I slept when I could.

So that about summarizes the going under and waking up part of surgery. 

Pain Management, and more...

I was released from Mayo today, mid-afternoon. I made a chart of when to take Tylenol and when to take Oxycodone. The Oxy is a low dose...5 mg. I was given enough for one week. 

People manifest and process pain differently. My pain arrises mostly from soreness from the chest tube placement and removal and from the two ribs that were broken to access the surgical site. It's manageable.

Finally getting out...breathing fresh air (even if low quality due to Canadian wild fires), eating normal foods, wearing normal clothes. These are such little things, yet I thank God Almighty for them.

I read my pathology report. I don't fully understand it, but the tumor was classified as high risk. Parts of it were necrotic. I believe that I am followed with chest CTs and chest x-rays. Time will tell. In the meantime, the tumor at its largest dimension was 12 cm (4.7 inches). There was no invasion of the diaphragm. 

The incision looks great! The hole for the chest tube has closed. I have a very large collection of black and blue marks...from heparin shots and from multiple attempts to start an IV. I also have bruising from the successful IVs that were removed. 

They did a nighttime oxygen study last night and I need oxygen added to my CPAP at night while I'm healing. Small issue!!

I was blessed to receive Eucharistic three times in the hospital. I was also visited by Fr. Ben and got a post-surgical anointing of the sick. I watched a movie about Mayo and its history while in the hospital. Mayo wouldn't have gotten off the ground if it weren't for the Catholic nuns.

The nursing team and their interns and aides were top notch. The team of doctors that visited daily were outstanding. The PT and RT folks were excellent. Honestly, everyone was excellent!! One exception might be for whomever placed my first epidural. It had to be redone in recovery. After that, it was smooth sailing. I was sad to see the epidural go...but it did its job and it was time to move on to oral pain meds.

We start the drive home tomorrow. Prayers for all of you!!!

Small Victories

I don't need Oxygen at home. A nebulizer with just saline is amazing for loosening up phlegm. Physical therapy went well. Even got to take a shower! Had a nice visit with Irene. Hopefully releasing tomorrow and starting the ride home on Saturday...God is good!!

Warning: PHOTOS

 

Quick Update

Epidural pain block has been removed. The challenge is to not let the pain creep up on you. The team is amazing and so far, so good.

Foley catheter is out! Can you say it with me? "YAY UNDERPANTS." It's the little things in life that bring great joy. 

The chest drainage tube came out early this morning! It was about a foot long inside me and  the source of a lot of pain. 

I did PT today and ongoing RT. The nursing team are the best ever! 

Might get released tomorrow but I hope it's not until later on.

How the surgery was nearly postponed!!

Warning: I'm a bit loopy as I type this (surgery was yesterday).

Mayo requested a pre-surgical chest X-ray and an EKG. They asked if I needed orders for them or would my PCP order them...my PCP ordered them [lesson learned...get the orders from Mayo].

I went into the PCP's office for the EKG, next thing I know nurses are getting paperwork for a pre-surgical consult...which I never requested!! After the EKG, my PCP pops into the room and says "you need to postpone your surgery. I won't clear you for surgery. You have inverted T-waves that we also saw months ago [why wasn't it important then?] You need a stress test...it would be unfortunate if you had a heart attack on the table." [Bedside manner????]

So my head starts spinning and I said "Please send my EKG to Mayo and they will decide if I need a stress test, or not." My PCP responded with "oh, they won't."

I insisted that my EKG be sent via fax. My PCP asked if his nurse had the phone number. She did. I called the nurse an hour later only to discover that she didn't send the EKG. When I asked why not: "Your PCP said to hold it until after results of the stress test. I drove to the office and got a copy of my EKG directly in my hands, and I sent it along with my Echocardiogram report from three weeks ago, and my chest X-ray, to Mayo.

The next steps, per Mayo, was to meet with their anesthesiology/admission team to see if they want additional testing done before surgery. Mildly inverted T waves (on my EKG) can mean many things. What I am most curious about is that my PCP mentioned that my EKG is unchanged from 6 months ago. Why was I not told then that I had inverted T waves? I also had all historical EKGs sent. Mayo reviewed everything, including a pre-surgical EKG they did in 2016 at Mayo. I had inverted T-waves back then too. A normal abnormality for me. Plus my Echocardiogram was perfect!.

Mayo concluded that I was cleared for surgery. 

The hospital CEO is well aware of some quality improvements that the hospital needs to work on and these contribute to me not being willing to do anything major at the hospital:

• Mis-reading my Nov 2024 chest x-ray...both an outsource group in Wichita and a local ARNP missed a huge tumor, plainly visible. 

• Ordering a neck MRA when I requested a head MRA after my ocular migraine to follow up on my mother's history of cerebral aneurysms. I had to do two tests to get one done.

• Confusing me with another patient and violating my HIPPA rights in the process.

Of course Mayo cleared me for surgery! It was yesterday. 

Thank God for Mayo 

Surgery Went Well!

Surgery went well! No diaphragm involvement. Pain is being managed. Some lymph nodes were tested and were fine.

Prayer was, and is, a huge part of my pre-surgery, surgery and recovery. I requested, through prayer, two angels to stand watch over me. I also requested, through prayer, an angel to watch over Bob.

I could feel all the prayers flooding my way, and I'm grateful. Thank you prayer warriors!!

I have milestones ahead...removing the epidural nerve block, switching to oral meds, lots of walking (already did that today), using the incentive spirometer 10x/hour. I even ate a light dinner!

More when I have something to report. 

Gratitude

O Lord, who hears the prayers of the faithful, bless those who lift my name to You in prayer. May they receive in abundance the peace and strength they have sought for me. Amen.

Met with the surgeon!

Bob and I met with the surgeon today. Another milestone in this journey. We learned a lot...some of which I wish I didn't know. Sigh.

He's wonderful. Kind. Knowledgeable. Seasoned (good thing). Nothing is on the calendar yet and I won't be publishing the surgery date here...but it will be in the next few months. The surgery date will become apparent after the fact...this is for privacy reasons, since I will not want visitors in the hospital. Close friends and family can reach out and I'll share details when I know them.

I have a "long oncologic runway" so that means I have time to remove this pomelo sized tumor. While it is a solitary fibrous tumor of the pleura and apparently localized, I did learn that it is in fact a cancer of the lung. It's just a really slow growing cancer that is often cured surgically. This news was an emotional blow, even though it doesn't really change anything. It just hit me psychologically.

The surgery itself - at least the surgeon's time - will be up to 3 hours. It could be shorter, but he has to account for the fact that this bugger might be attached to my diaphragm. There's a long surface area of where it sits on the diaphragm and we don't really know where it originates or if it's invaded any of the diaphragm. So, it might mean that my diaphragm needs to be resected and repaired. I shouldn't lose any of the lung...perhaps a small wedge resection if it's invaded lung tissue. Total surgeon time will depend on what he finds when he gets in there. If it's a clean removal (emanating from a defined "stalk" such that it pops right out) then the time to open and close is more time consuming than removal. But if it's attached and invaded local structures, that's another story. With prep time and recovery time, it's probably 5-6 hours from the perspective of Bob waiting in the hospital to hear anything.

The incision will be between the 8th and 9th rib. Lower than I thought and not anchoring up to the shoulder blade...so that's good. The incision will be below the area of a bra strap, so that's good too. They will use a rib spreader and suture the ribs back together without drilling any holes. Sutures will dissolve over the course of a year. I'll likely be in the hospital for 5-6 days (not the three days originally thought). The longer time period is because the surgeon reviewed my CT in detail and knows more about his surgical approach, etc. Feeling more "normal" takes 4-6 weeks - that's when most people can come off the narcotics and switch to regular pain medication. The healing process is more like 8-12 weeks. I'll need respiratory therapy, and using stairs at home will be okay.

There will be an epidural pain catheter inserted into my back before surgery while I'm awake. This helps control pain for the first few days. I'll wake up with one or more drainage tubes to ensure proper lung inflation, removal of fluids and to help reduce the risk of infection. Infection is more complicated to tackle if an infection around the lungs takes hold.

Riding home will need to be done in short hops with lots of breaks for walking. The incision will be closed with sutures that dissolve...no staples (yay) and not removable stitches (yay). 

The risks of this surgery are similar to that of any other major surgery while going under anesthesia - stroke, heart attack, infection, etc. Oh yay. I've had 10 surgeries where I had to go under. But this one will be a doozy because it's much more painful when an operation takes place near the lungs. It's not the incision that hurts. It's not the breathing itself that hurts. It's the breathing causing movement of other structures - like ribs that have been spread apart. Ouch.

Afterwards there will of course be biopsies done of the tumor. The mitotic features of the tumor will tell us more about the odds of it recurring/returning and if more treatment will be needed. Based on the PET scan, odds are this is curative with surgery. But several answers today were "I won't know until I get in there." Or "I won't know until we get biopsy results."

Other misc. info: I should stay on my Celebrex. I should bring my CPAP with me. 

Tomorrow I have an MRA to check the blood vessels of my head and neck. This is because I had an ocular migraine a couple weeks ago and I need follow up. So the medical gifts just keep on giving. I also have an upcoming (yet to be scheduled) echocardiogram to check an incidental finding from the same CT that found the pomelo...a slightly enlarged pulmonary artery. 

I'm admittedly tired. I could use a vacation but that's not really happening any time soon thanks to all this medical "stuff." Work keeps me distracted and the kids keep me smiling! Being surrounded by prayer, a Catholic environment, good people and friends helps too. So, while I'm annoyed and tired and wish this would all just go away, it is a cross to bear and crosses are good for us.

If the MRA and the Echo show nothing, I won't bother writing anything up here. Let's hope so and I'll update you after surgery.

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...