I’ve gotten tons of messages and well wishes from people and many are wondering how I’m doing. Someone told me they thought I should have a Caringbridge account so I can let everyone know. NOPE. I have the blog here and far prefer that mode…so how am doing? Here goes…
In one word…Tough.
I expected to have snapped back but that really hasn’t happened. I’m tired.
Kalissa and Kelli have assured me that it is because my thyroid numbers, TSH, are trying to balance themselves out again. All of those get totally manipulated when I am treated and it does take a bit to level off. I didn’t get any of my thyroid meds in the hospital so it’s taking even longer to catch up. I am still quite hypothyroid.
They are also reminding me that “you just had oral chemo”. Yes, I think some of this “meh” feeling is partly that. I was told to expect to have side effects from that for up to 6 weeks after I stopped taking oral chemo and the last time I had that was Friday the 7th. So I have a bit longer to go before I can expect to feel great.
Because of the oral chemo and the terrible face rash I had, they put me on steroids for the whole month. Those were messing with me making it hard to sleep and keeping me pretty wired yet I was tired which is a bad combo. On top of that, the steroids put my blood sugar into wack and I didn’t get any of my diabetes meds in the hospital so that’s taking a bit to figure itself out too. I ended up weaning myself off the steroids early. The side effects were too much and my facial rash is under control.
But…worst of it all is my mouth. I’m having trouble with my salivary glands. This is a common side effect for people who are treated with Radioactive Iodine. For some reason, the radioactive iodine moves to the salivary glands and creates havoc. My mouth is like one GIANT canker sore…it feels like I burned the entire inside of my mouth. I can’t taste food (No I don’t have Covid). I can taste but it’s all metallic tasting and doesn’t taste normal at all. My mouth is painful even when I don’t eat. My tongue is swollen and super sore.
On top of that, my jaw bone joint on my right side is a mess. At the joint near my right ear, it’s painful to the touch and is swollen. My jaw now pops out of place. It hurts to eat and to be honest, it’s easier not to. (I know, I’ll eat.)
I talked to the doctor. Here’s what I can do about it. Ice my jaw…I do it like this so I can still cross stitch. I am dedicated to cross-stitch.
massage my jaw
suck on sour candy
drink water by the gallons
It’s hard to drink when it tastes like metal. It’s hard to suck on candy when your mouth HURTS.
It should resolve itself in two weeks. In the meantime, it’s super annoying.
Another problem I’m dealing with is not having the best sense of touch in my fingers. It makes cross stitching hard but do-able. I’m just slower.
See what I did to my thumb? I cut it first with a kitchen knife when I was chopping veggies for a stir fry….then cut it two days later with a kitchen scissor. I just don’t have the feeling in the tips of my fingers to pull back or judge where a knife is going to hit. WEIRD. I know.
This has been super sore. One might think I can’t feel it …but now I can feel it.
Everything on me is dry…dry lips, dry eyes, dry skin…DRY.
Brain fog. I feel a little off and not as sharp. That’s the thyroid levels and the oral chemo.
I am super cold much of the time. Again, that is related to thyroid levels. Until your thyroid isn’t working or you’re dependent on thyroid meds, you really don’t realize everything a thyroid does. They are amazing little guys that are HIGHLY underrated. Right now I am still hypothyroid.
I know that sounds like a lot of complaining but you all have been asking and I want to be honest.
BUT…more than all of that. I am THANKFUL. I am so thankful my cancer was treatable. I am so thankful I was able to be treated. All of this stuff that you just read is a bump in the road. I am on the mend it is just going to take longer than I expected. All of these are manageable side effects that will go away. I just need to be patient. I am super thankful I’m still off work and can take it easy.
Another reason I’m thankful. There is now a shortage of Radioactive Iodine. I belong to a Facebook group for people dealing with the low iodine diet I was on. Many of us are on the diet with the intent of getting Radioactive Iodine treatment.
After I got home from the hospital last week, I started seeing a few posts like, “I’ve been on the diet for two weeks. The hospital just called and canceled everything because they can’t get the radioactive iodine in.”
Then towards the end of the week, there was this…
Ah…that freaked me out a bit. I was SO THANKFUL I got my dose.
You might remember that when I went in I had to swallow EIGHTEEN pills to get my tracer dose because they couldn’t get the liquid form in?? The normal liquid form would have been like a shot’s worth.
Um…WOW. I can’t imagine if I had gone through the oral chemo and the diet just to be told that they couldn’t get the meds. I would have been heartbroken.
Worst is this…This message came through the Facebook group on Friday…
“Well just got a call from my nurse at Mayo Clinic in Rochester Minnesota. She informed me that there is a supply shortage of IRP. Was scheduled to go in the first of the week to get the shots of thyrogen and then the iodine radiation pill but no guarantees that the pill will be available. So it looks like I’m going to be rescheduling. I would advise anybody that is scheduled for next week for the iodine radiation pill wherever they’re at is to call to find out if it’s going to be available. Bummer”
I went to Rochester Mayo Clinic. This really could have been me. She is only being treated two weeks after I was. WOW.
This was pretty much all it took for me to REALLY embrace the side effects I am having. I am so thankful for them because if I didn’t have them, it likely would mean one of two things…I was dead or I wasn’t able to be treated because of the shortage. I could have been one of the unlucky people who are now having to postpone their treatment because of shortages. I can’t imagine the head game that could play in people.
So…bottom line. I’m not doing great. I’m not doing terrible. I’m hanging in there. Most of all, I’m thankful…because I was able to get the medicine I needed and I’m moving forward.
You are so loved and cared about, Jo. Don’t ever lose your faith and positivity (I know you won’t)!!
Try using plastic silverware. That worked for me while doing treatments for breast cancer.
I’ve been battling breast cancer for 13 years. Some days are way better, some days are way worse. I now have severe radiation burns on my calf from skin cancer treatment. Also recovering from a broken hip.
Sewing , knitting wool applique and other crafts get my mind off my troubles. I’m so thankful to be alive. I’m so thankful I have good and cancer aging doctors. I just know tomorrow will be better.
I just know you will get thru this and tomorrow will be better.
Thank you for the update I’ve been wondering how you were. You’re in recovery mode please relax and take the time to heal. I think we are alike in that both of us push to be independent no matter what. Once your blood sugar and thyroid levels normalize and you are off the steroids you will be as good as new.
oh sweetie, hugs and more hugs that sounds perfectly miserable. Remember you must be the nurse of yourself – and that includes just laying yourself down and being still, both physically and mentally.
Imagine all of us forming a big tent over you – you are safe, and you are healing… and we will keep the rain off you while you rest.
Thinking of you. Glad you had the radioactive iodine before shortage set in. Hang in there with there with the side effects. Doesn’t sound like a picnic.
Jo, I’m so sorry you’re feeling so bad. I wish I could be there to help. I wish there was something I could do.
WOW! SO glad you were treated 2 weeks ago – what a nightmare for those who are “stuck”!
Prayers and hugs that the rest of your experience improves quickly…
I wonder if your dentist might have some sort of mouthwash you could use to get some relief from the mouth pain. It would be worth asking. Bless you Jo.
Thank you Jo for letting us know exactly how you are doing and what you have been going through. Who would have thought there would be a shortage of the radioactive iodine! Thanks be to God you had your treatment when you did! Prayers and blessings to you always.
I really like your head wrap to hold on the ice pack. You seem to always find a way to get done whatever you need to. Your patience and perseverance are so good to have at this time. I’m sorry to read of the shortages of the Radioactive Iodine. That would be hard to deal with for those affected.
Wow – glad you were treated – sorry to hear of the side affects but your attitude is great. Pray the mouth sores go away soon!
Your optimism is amazing. You have many people rooting for you! Get the rest you need, hope you feel better soon!
Hi Jo… Thank you for the update. I am so impressed with the positive and grateful attitude you have. Will keep praying that you come thru the remainder of your treatment quickly. Enjoy the opportunity to rest while you can…you will be very busy with life as usual soon! How is the weather treating you?
Please take good care of yourself. Blessings
Jo thanks so much for being honest and sharing! That’s what I have always appreciated about you – being upfront and telling it like it is! I can’t imagine dealing wit rose specific side effects but I am SO thankful you got your dose! Hang in there and know that lots of us are praying for you! Sending hugs your way!
Glad to see a post from you but so sorry that you are still feeling under the weather. Grateful to the Lord that you were able to be treated even with all the side effects. You are closer to healing. I get sores on my fingers. And have been using Bag Balm. It helps a lot. And it’s an old Farmers remedy. I had to buy mine on Amazon as it’s hard to find in most stores.
Still praying- still believing that soon you’ll be doing all the things you love with your family and you’ll be 100 percent healthy.
I’ve used Bag Balm for years, also great for the feet.
So glad everything is working out for you.
Thanks for keeping us in the loop for how you’re feeling. We all care so much and want you to do well. I’m sorry we can’t help your side effects or take some of them away . It’s hard watching anyone you care for suffer! You continue to be in our prayers and I’m sure you will do well once you are all back in balance again.
So glad you got your treatment but dang, all the crap that goes with it!! I’m super cold all the time and on thyroid meds but can’t imagine having to ice the jaw when I’m freezing! And I feel your pain with the dry eyes and lips and then to have sore mouth along with it. Glad to know you are seeing the light at the end of the tunnel and hope it comes real soon for you. My DH was on oral chemo and steroids and it really beat the heck outta him.
Jo did the doctors ever suggest getting a massage after you treatments. Might be worth asking.
You have such a positive attitude about everyone even though you hurt. It puts it in perspective the small aches and pains that I have on occasion.
Did you get your snow removed after the storm. We got between 5-6 inches. I got out and did the sidewalk while hubby did the drive. They it was off to quilting.
Stay safe and still.
I’m sorry you are having a difficult time getting back to normal. I admire your positivity on seeing all the things to be thankful for. You got this and you are correct it will get better. Thank you for telling us how it really is.
Jo, I am so glad that you had the oral chemo. Modern medicine has come a long way and you are on your way to recovery. It is just going to take time. It is the pits that there has to be side effects. My thoughts and prayers are with you. I too am interested in the cross stitching class. I cross stitched way back in the1980’s with aida cloth. I also made a Paula Vaughn picture with a quilt in it. Also one with an antique sewing machine . I still have them. Can email pictures when we get back to SD. I looked back at one of your emails from Jan. 9, 2021 at the end of your Jan. 15, 2022 email. You talked about things to know and buy for cross stitching. You have said a few times you like your Morgan hoop. What size would you recommend to purchase in getting started? Think I would like to try the linen. Any recommendations on that? Take care now
Hi Glenda. I have the 7″ and the 9″. I think I use the 7″ most.
You are a very special lady, Jo, — to your family and to all of us out here in blogger land. This will all pass soon and in no time you will be back to your old self. I know that you have the fortitude to fight your way back. Everyone is rooting for you. Keep up the good spirits,
Hi…sorry to hear your feeling like u do. I had mouth and throat cancer. I had 28 radiation treatments. Yes it works havoc on the mouth and jaw and saliva glands. I was taking Magic mouthwash. Rinse your mouth 4 or more tunes a day 15ml each time. Gargle a bit swish it in your mouth.. it kills the ulcers and mushrooms in your mouth. I use to love eating cold. Warm cucumber soup.. its creamy… drinking ensure as well ti get all the nutrients… im still seeing my oncologist every 3 months. It’s been 10 years. Last year they took out one of my saliva glands. So I have pills to increase saliva…and sucking on sour non sugar candies. I’m diabetes as well. I can relate to you. When they had done a radiation mri… I was suppose ti drink alot of water… next day we were leaving Québec Canada we passed customs they seen me coming. We had to get out of the car… they searched car… went into building and I had to pass thru a scan. Talk about scary. They had guns… Anytime u want to talk please write to me… I might be able to give u some tricks. ginette lefebvre
Jo, glad you are in the recovery phase and not freaking out about not having the treatment available. Hot tea (with milk in my case), and sauerkraut juice are two things that helped my canker sores; maybe they would help sooth your mouth.
Another thing to be thankful for – you’re a quilter! Have chills – grab another quilt. Need a face ice wrap – grab a piece of fabric. Feel frustrated – go vent in your blog or sew or cross stitch. You’ve got this Jo!
So glad you are on the mend! You have such a positive outlook and that will get you through…so glad you have the cross stitch to distract you when you feel up to it! So many of us have you in our prayers…I know you know that! Hope you feel better soon! Just wanted to let you know that I’ve been told that Dentiva lozenges are very good for dry mouth…here is a link if you want to try it! https://www.amazon.com/Dentiva-Complete-Oral-Hygiene-Pack/dp/B00JQM3QJK/ref=sr_1_2?crid=1JU381X289YHI&keywords=dentiva+complete+oral+hygiene+-+6+pack&qid=1642296920&sprefix=dentiva+%2Caps%2C139&sr=8-2
I know how it feels to have severe hypothyroidism. I had no idea what was wrong with me— I truly felt I was dying. The thing I was being seen for was the awful snoring. I was getting ready to have a sleep study done, and the doctor had a flash of insight and asked if I’d had my thyroid checked. Sure enough, it had died. I remember the dry skin, the frazzled hair, and the sensation that I’d pulled a muscle just reaching for a light switch. Luckily the treatment is the synthroid. You are such a trooper to have the attitude you have through all this. I hope these horrible times pass quickly and you can get back to normal.
Just sending you lots of love. Hang in there!
Gentle virtual hugs and thanks So much for the update. So very glad you got in & got your treatment before the shortage. I feel so badly for those folks who are now in limbo regarding their treatment.
Thanks for your honest and heartfelt post, Jo. Your body has been through so much! Prayers as you slowly heal… one day at a time.
So grateful you were able to get your treatments, Jo! These annoyance and bumps in the road will pass. I pray for you while I’m cross-stitching. May the Lord continue to hold you safely in the palm of His hand.
Your are neither complaining or whining. You are teaching people what it is to walk in your shoes (not that we can possibly relate or understand).
Can you down protein shakes? The thick liquid could be a coating in your mouth for a moment and perhaps provide a momentary relief. I like the Premier Chocolate (can’t stand any others).
I’ve been severely hypothyroid-it stinks.
Praying that the next 4 weeks brings your some relief and closer back to your normal energy levels and physical well-being.
Continued prayers for you Jo. You are a trooper
Oh Jo, I’m sorry you’re going through so many side effects. I’ll pray for them to ease up. You’ve gone through so much already. You have a very good attitude though, and really supportive family members, so hopefully, you’ll be in a better place in a few days. Take care, Jackie
Thank you for all the details. I like that you tell honestly what’s going on. You are very loved. Sending lots of hugs & prayers your way. God has you in the palm of His hand. He will heal you & you will feel amazing very soon. Take care & take it easy.
thanks for the update. you are dealing with at least three issues at the same time. The endocrinologist said there will even be times symptoms will be blamed on getting older but most times it will come down to that little old thyroid. then you have glucose challenges. Chemo amounts to taking poison and what about those steroids ??
For the dry skin my son in law used Eucerin. His oncologist had baskets of sample sized bottles in the office with a sign inviting patients to please take some. It only takes small amounts and does a fantastic job.
still praying for you
So glad you got your treatment in and prayers for a quicker healing! Hard to hear that others are left with more unknowns waiting for treatment.
Hang in there !!! Can you have pickles? I remember that was one of the only things an uncle I had could taste and enjoy. Praying for you to get things balanced and feel a bit better.
I agree, thyroids are underappreciated. My sister had hers removed as a child in the late 60s. She took synthroid for most of her life. My dad developed hyperthyroidism as an older adult. He was dosed with a radioactive pill twice accidentally instead of just once and it’s a continuing battle to keep him sorted. It can be 80 degrees out and my dad will cover up. Meanwhile my mom, who had a full hysterectomy back in the day when that was the treatment for fibroid tumors, is always too warm. Mom has always kept an eagle eye on not only me, but on all her grandsons as well. So far none of us have any of the thyroid issues that run in dad’s side of the family. Keep looking ahead and stay focused on Jesus. Some of the blog friends had what sounds like good suggestions for you. Blessings
Jo, When I was doing chemo I always had 2-3 day where everything tasted tinny. The only thing I could have was a chocolate malt or a root beer float. And I’m normally not a big ice cream lover! Good luck and I’ll keep you in my prayers
You are doing great. You are loved and we are praying for you. Soon you will feel better and you will beat this.
Someday some of us may face what you’re going through. Being honest about the slow recovery and how miserable you’re feeling may make it easier for someone else in the same situation to not feel frightened or depressed when they have to go through it.
So glad that you were able to get your treatments before the shortages happened. I understand about the fingers not feeling well enough. I’ve been trying to start cross stitching again and I keep dropping my needle because of neuropathy in my fingers. Especially on my right hand. And, of course, I’m right handed. But slow going is better than no going. Take care of yourself. I’ll keep praying for you. Lots of virtual hugs coming your way.
So glad, too, that you were able to get your treatment. Trust that everything will work out for you.
Hang in there. Just know that there are many of us following you that you may never meet. But we love you. Thank you for sharing your life with us.
The pharmacist should be able to mix up a mouth prep to help you. Talk to them. Use plastic silverware that might help. Rinsing your mouth with Pepto Bismo also might help neutralize some of the pain. That metallic taste is the worst. Prayers for you.
So sorry that you have to experience all these miserable side effects. You are such a fighter and I know you will come through this. Be brave and keep up the good fight. God be with you!
Thanks for letting us know how you’re doing, Jo. So glad you were able to have the treatment; I can only imagine how devastating it must be for the people who’ve been told there’s none available. There seems to be lots of ideas here of things which might help you, hope you find one that works for you.
I’m just so glad you are on the OTHER SIDE of the chemo. When I was first diagnosed as Hypothyroid it took a long time to get mine regulated….I just remembered sleeping, and still being tired!
Recently someone suggested a hand lotion called CerVe. it’s expensive, but I love it. DH has very rough hands and arms,(weathered) I’ve been using it on him at night too. It’s least expensive at Walmart than another place. I’ve not found it many places.
I get those cuts and cracks on my fingers in the winter. NEW SKIN will seal them off it’s basically superglue. the CerVe will also help them heal.
Dearest Jo – so many have said what I would have said so I will just say you are loved with an everlasting love and that we continue to pray for you.
Love and prayers
Jo, regarding your sore mouth. I often suffer from this due to a medical condition and have found relief by using Magic Mouthwash. That’s the real name. It’s a mixture made by prescription. Mine has lidocaine, nystatin, and Benadryl. The lidocaine numbs things up quite nicely and gives relief for some time. As they say on TV, ask your doctor if this is a medicine for you! Best of luck until the side effects subside.
Carol Hartman
OH My Jo, thanks for sharing. We are so grateful that you were able to receive treatment and didn’t have to reschedule. What an awful thing, The supply chain crisis is affecting everyone. Not just shelves in grocery stores. I had mouth sores when I was in college back in the 60’s. My parents thought it was scurvy due to lack of fruits but who knows. At that time, I gargled with Listerine. It hurt like heck but it helped to heal the pain. I take a low dose of synthroid to help with clinical depression. I agree. we need it. Take care and relax. There is a reason why you are quarantined for 6 weeks, to get better.
You got this! Your face wrap was a brilliant idea. Glad you have your cross stitch to keep your mind off your side effects. Shortage on medicine, what next. Glad you got your procedure done before this happened.
Biotene mouthwash and toothpaste should help with the saliva problem. Godspeed.
Jo. Thank you so much for the update I think about you every day praying for you. You got this! I just received a shirt I purchased from your daughter for my mom for her birthday and she is beyond thrilled sending lots of love your way Denise in Florida
I was hoping that you had some good news of feeling better but I’m sorry things haven’t turned around for you yet. Thanks for keeping your journey real for us. I pray you get relief soon.
You give the best updates. It’s not complaining, just the facts. I appreciate that. It helps me know how to pray for you. I love your outlook and how optimistic and grateful you are. It’s so refreshing compared to what we normally see in the world today. I really feel for those people who are experiencing medical issues combines with supply issues. You are loved, Jo. Keep being you!
HI Jo prayers for you to heal quickly. You are so amazing in your life. Dealing with your health issues and staying so upbeat is a lesson in itself. Thank you for sharing your blog we care. Mom aways told us children sleep is a good medicine. We all care for you.
Thank you for keeping it real and being honest about the misery this round is dealing out. It will help someone in the future. Keeping you in prayer! It is quite the helpless feeling to want to help someone and knowing there is nothing I can do from across the country. Your positivity in the face of everything is a shining light for the rest of us to emulate. Just so glad you had your treatment before the shortage…that would really mess with your head!
Jo, we always use, for your thumb, what’s called ‘New Skin’. Reapply every day but initially, it’ll burn on a new wound, but after the first application, it will not hurt anymore. Good luck!
That is not complaining , it is sharing and educating. Life is so hard sometimes….We keep on keeping on. Love and hugs to you xoox
Jo there is a compounded mouthwash called “Magic Mouth wash” made just for your mouth problem . See if your primary Provider will order it for you .
Read your blog daily and think of you often ! Loretta
So glad you are this far in your recovery journey. Your attitude and outlook are so amazing. You r in my prayers and May each day be a step closer to feeling like yourself!
Thank you for the update. You’re not complaining, just explaining. Now we know more specific what to pray for. I’m thankful that you we’re able to be treated two weeks ago, and I’m praying for the supply of IRP to return to normal.
Prayers for you as you get through this.
I must admit I don’t follow your blog on a regular basis, but I sure did today. My thoughts and prayers are with you during this difficult time. I also have hypothroidism, on low dose synthroid. I had no idea the throid could create such problems. Thanks for the update. Keep on keeping on.. Judy in Virginia
Jo, you aren’t complaining, just explaining. I’ve been thinking of you so much. I will keep you in my thoughts and prayers. Your strength is inspiring.
Thanks Jo for telling your story/history re your thyroid cancer. Mine was and remains quite a different story. It was 1963, i was 19 years old, married and had 3 children already. On a routine visit to the Dr. he felt my neck for the first time and then asked “how long have you had this lump?” I asked “what lump?” It was so long ago i don’t remember if there were any xrays, scans or anything, all i know is that i was in the hospital very quickly and the right side of the thyroid was removed and i had a very ugly jagged scar of about 6″ long on my neck. Much to my dismay President Kennedy was killed on that day and he had been my hero but i wasn’t able to see any of it on tv. Upon a future visit to the Dr. i mentioned that i check the opposite side regularly and i was admonished to not do that; he said “that’s my job; i’ll do that!” However, whenever i saw him he did not feel my neck at all and so i kept checking it and sure enough i found another lump on the opposite side so i was soon back in the hospital. This time the scar on my throat was pretty much from ear to ear. I became so embarrassed to go out in public as people stared and probably thought i had been attacked or someone had tried to kill me or something. For years afterwards when i had to go out i always wore turtle neck sweaters which were not becoming on me as my neck is quite short. Friends and relatives told me to be proud of my scar and eventually i got over it. Its been 59 years and i’m now going on 78. My 3 kids have blessed me with 7 grandkids and a 5th great grandchild is now on the way. I got over the neck scar issue and it’s dropped down onto my collar bone now which seems bizarre but i guess everything drops as one ages. Reading of your experience Jo made me realize just how very lucky i was as medicine has grown in leaps and bounds and has improved so much over the years. I still wonder why this happened to me as nobody else in my family had cancer but i did and at such a young age but living my life has been a pleasure. Still married to the man i wed in 1959 when i was 15; he was 19. He is now going on 82 and still happy and spry. He fought a battle with lymphoma cancer last year but he is cured and well now. Wishing you all the very best Jo, hang in there girl and i pray that life will become like roses again for you.
I’ve sent you an email and a box of lotions and products for skin from Melaleuca. I use the lotion daily and my skin is smooth and supple. Enjoy the pampering. You deserve it.
I’m not sure you will see this post as I’m answering on an older blog. There were suggestions from some about the prescription magic mouthwash and I suggested Listerine that I used when I had mouth sores. Today I found this article
“The study in the journal Pathogens finds that, in a laboratory setting, Listerine and the prescription mouthwash Chlorhexidine disrupted the virus within seconds after researchers diluted it to concentrations that would mimic actual use.” These two mouthwashes were found to kill the virus in your mouth! And Listerine might be less expensive that the prescription. Who knew>?
My mouth is really weird. I don’t believe this is a virus in my mouth. These are either radiation burns or burns from oral chemo. My mouth is so painful. It feels like 3rd degree sunburn with raging blisters. I did go to the doctor yesterday and got a compound mixture that numbs my entire mouth. That’s been helpful but I end up with that awful taste but it’s worth it to not feel the sunburn type pain.
Hi jo… the other day I mentioned magic mouth wash… helps with your ulcers and mushrooms… from radiation. Brom my oncologist I also got lidocaine which numbs your mouth. Ginette. P.s. take care
Know that you are in my prayers. Know you are loved