Cancer Update

I thought I would give you a little update on how I’m doing. I am now 27 days post-treatment. I started in February with a month of oral chemo. Mid February I went on the diet. Then March 1st I had radioactive iodine.

When I gave you an update last week, we were waiting for a number and I promised to tell you about it. Well, this is the non-update update.

One would think I should be great and “over it” by this point but, things are lingering. Everything is going WAY better than the last treatment in 2022 so I feel like I can’t complain…but there are still some things that are hanging on.

I told you that I’m itchy. When I say itchy, it’s not a mosquito bite itchy. It’s not a my wound is healing kind of itchy. It’s a “I wish I could take a knife and peel off the very top layer of skin because it would stop the itchiness” kind of itchy.

I believe it’s from the oral chemo. It started before I got radioactive iodine. It started on the back on my hands and on my buttocks. Then to my elbows and shoulders. My back and then my lower legs. This is my lower left leg. UGH.

My hands, elbows and butt are way better…slightly itchy occasionally. My shoulders and back and medium itchy…enough that good self discipline, allergy meds, antibiotic and prescription lotion are managing it for the most part…but my legs are not fun. I feel like they get just a notch better every day though.

People see me and say, “Wow. I didn’t expect you to look so good.” Hmmm. I’m hiding the brunt of the “good” under my clothing. Again…all of this is nothing compared to the fatigue and problems of regular chemo or radiation…still not fun.

My mouth is still a problem. The tastes of things are off. Bananas ready to eat taste bitter like green bananas. Anything with carbonation hurts to drink it. If you remember Pop Rocks. It feels like those in my mouth only burning. My mouth feels like I took a huge swig of HOT coffee and burned the inside of it. Oddly, coffee drinks don’t bother it a bit and that is a flavor that tastes pretty normal. Chicken is good for me eat by not spicy in any way.

The other day coming home from work I decided I would have ice cream when I got home. I was sure that would feel good in my mouth. The flavor I had featured streaks of chocolate in it. The chocolate burned my mouth.

Worse of all…the taste issues change frequently. Grapes started out being good. Now they bother me. They have the tannon flavor that not so good wine has.

Pretty standard all along, my go to has been toast, sandwiches, pretty much any bread product (THANKS Ila for sending some!!!) Fruit has been hit and miss now. Yogurt and any dairy product has been good.

The back of my mouth is not problematic anymore…it’s mostly mid tongue and forward.

My lips had been very dry and uncomfortable…now they are okay…

Mostly…I’m getting better. Every four days or so, things migrate to a little better.

I was supposed to see my doctor Tuesday morning. I requested it be a telehealth appointment. There were no tests so why drive to Rochester again. I asked when they were doing a “check in” with me on the phone. They said sure but it says here you need a blood test. You can do that locally. WHAT? They’ve never let me do that before. So last week on Thursday I went in and had my blood drawn. I told about all of that in last week’s blog post.

I told you some numbers had come in but the Tumor Marker telling me how much cancer had been killed in the process of my treatment was not in. That test number didn’t come in on Thursday, not Friday…and on Saturday morning Kalissa, my daughter, and I were sick of waiting. We called and inquired about it. They said it was still pending.

On Monday afternoon, I still had not heard. There was no need for me to have my appointment on Tuesday with no Tumor Marker test results. So I called the lab. Oh, that test gets sent to Utah. WHAT? I live in Iowa. Mayo clinic is two hours north of me. To top it off, the test result wouldn’t be in until FRIDAY THE 29th. (People, I cannot make this stuff up!!)

So I was on the phone Monday afternoon asking that my Tuesday telehealth appointment be changed because of all of this. I explained that I had the test done locally and they shipped my blood to UTAH! I said the test result wouldn’t be in until Friday so I needed an appointment update. Tuesday wouldn’t work.

The gal explained that she was a secretary and couldn’t make the appointment change. She would ask the schedulers to do that.

I didn’t hear from them later that afternoon or the morning so I figured I was having the telehealth appointment on Tuesday. Kalissa drove to my work place because she wanted to sit in on the appointment. She took my phone and started to connect only to find they moved the appointment to Friday morning (NO NOTICE to me!!)

Kalissa went home. I sent a message on the portal that the 8am in person appointment (why they didn’t make it a telehealth appointment I don’t know) wouldn’t work because the result from Utah would be coming in on Friday and likely wouldn’t be in by 8am when the appointment was. Maybe they could do it later in the day.

I ended up getting a message back. They moved the appointment to April 5th. It’s a telehealth appointment.

Oh my word. What a run around. What a run around.

Lesson learned. All bloodwork gets done at Mayo Clinic the day before my doctor appointment. Driving the two hours up there and the two hours home for a single stick in the arm is preferrable to all of this…and likely was about similar in time that I spent on hold while I made four phone calls to figure this all out.

So…I’ll find out the tumor marker on the 29th…but won’t meet with my doctor until April 5th. UGH. That will be a long wait but I guess I’ll have plenty of time to google my answers. HA!!

Patience is something I was terrible about when this all started. I am getting better at it but man, I wish didn’t get so much practice.

Over all…I’m doing okay. Nothing is really cramping my style minus some food issues and the itching…always the itching. I’ll have more news to share when it comes my way. For now, no need to worry about me.

P.S. Mary at Chicken Scrath Country Threads blog put out a message to send me cards to cheer me up. I got flooded…it was so fun. I’ll tell you about that in another post. THANKS Mary!!

27 thoughts on “Cancer Update”

  1. Oh, how annoying that they sent the sample to UTAH! You’re right – the drive time is more than compensated for by the fact that you won’t have to deal with the telephone run-arounds. I do hope that the itchiness isn’t keeping you awake all night, and that you get rid of it soon. Sending positive vibes for you!

  2. Jo, I know your doctors are probably on top of this, but ask them if they have checked your liver function in the blood tests. My daughter’s intense itching turned out to be a bile duct blockage that in turn was causing her liver to shut down. It took them months to figure it out. After finally doing an X-ray/scan she had emergency surgery the day after they found it. They had just been writing it off as allergies. It wouldn’t hurt to ask. I’m very happy that other than your itching you seem to be doing so well under the circumstances.

    1. Another cancer patient with what got lumped into a ” chemo itch” by oncologist was investigated by family doctor for the liver issue and similar issue to your daughter ‘s results.

  3. Cynthia from Nebraska

    Oh, Jo…just because it’s “better than last time” doesn’t mean it still sucks this time! Such a frustrating run-around. Hope you can find a few more things that both taste good and feel good in your mouth. Thank you for educating us on this – I have a friend whose son has thyroid cancer and I can understand a lot of what she’s talking about!

  4. I have a thyroid issue too – mine is graves disease. Not like yours at all except for the itch…….it drives me wild sometimes!! I discovered that witch hazel really helps it. For hard to reach places – like the middle of my back – I use a long skinny rag and get it wet with witch hazel and then using both hands I can get where I need it. I hope you get some relief for it soon!! I really enjoy reading your blog!

    1. wow. who would have thought that i would receive a suggestion for my Graves disease itch. ????? I have tried so many things but witch hazel never occurred to me. thank you.

  5. I know not everyone has the same itch. I had a bumpy red itchy rash on the front of my leg, below the knee got prescription that didn’t work, a friend said white vinegar 3 times or more a day. I did that a lot, rash was gone in less than a week. Your’s is different but what’cha got to lose.
    Oh, don’t drink the vinegar, apply it on the skin.
    Prayers

  6. Martha W in WY

    I feel for you. I’m sure it is frustrating for you when you really want to eat something and then can’t. It sounds like your symptoms locale change almost daily. Do you have any idea how much longer until the symptoms start decrease in severity?

  7. You must feel like screaming some days with all the messing around with the medical system. How frustrating!!
    Hopefully you get the numbers through today.

  8. For your mouth, try OraNurse from Amazon. It is a unflavored, no foaming toothpaste that has done wonders for me. Use a tube before you decide if it is working or not. Use Vaseline as your lip balm for one tube of toothpaste paste to see if that helps your mouth as well. Unflavored is the key to burning mouth. For the skin, try Aspercreme lidocaine cream. It helps with the itching by numbing the skin.

  9. Oh incessant itching is no fun! Due to a lot of misdiagnoses and numerous tablets for stomach illness, I eventually went like an Oompa Loompa, so finally I had my gallbladder out as the orangey yellow gave the game away! But that itching that followed – oh so horrible! I hope yours eases off soon. The doc suggested bathing with baking soda in the water when my son had Chicken Pox, it seemed to help. Great that some people’s comments have solutions to help others too.
    Annoying that you were given the runaround though. Hope all goes well for the next appointment!

  10. I read Mary’s blog. How did I miss that post?
    Frustrating that the health system is so complicated-technology can help and hinder.
    I’m celebrating your progress,

  11. Utah of all places? I wonder why.
    Anyway, keeping you in my prayers – thankful your dd can help you out with this – and that you are slowly getting better with the itchiness and soreness.
    Thank you for taking the time to let us know.
    Much love and prayers

  12. Jo, I am so sorry you are having an itching problem after treatments. I use Zarna. It works great on my Eczema. I have you on my prayer list everyday. My husband has cancer too. We know what you are going through with all of the appointments, etc. It is a nightmare. You have such a positive outlook. I admire you so much.

  13. I am so thankful you are the trooper that you are. I cannot imagine what it has to be like to be so itchy. I am hopeful that one of the suggestions others gave will help you. It is such a bummer that you have to deal with such run arounds. My prayers continue for your healing and reduced side effects.

  14. Oh, Jo, what you have been through! But you are still standing, Praise God! Prayers for you will continue throughout this whole ordeal. When my son faced with terrible itching, regular oatmeal in a sock soaking in a warm tub helped. I am glad things are not as bad as last time. Your words will help someone else.

  15. Pediatric Oncology nurse here…just want you to know that you’ve been on my daily prayer list for a looooong time! Prayers and a positive attitude are some of the best medicine. I believe in miracles because I’ve been blessed enough to witness a few! ❤️❤️

  16. Jo, have you tried all the different suggestions for relieving the itching? Actually, I want to write them all down in case I ever develop an itchy rash. Lots of things to try that I would never think of! I hope you got good numbers today! I have been dealing with a hospital bill from February 2023 that has been disputed (they didn’t file it correctly). They discounted it rather than refile with correct code. After being on hold for a long time today, I finally just paid it. It wasn’t worth all the hours I had spent on it. Now it’s over.

  17. I know you’re not making all that up about the run around and all the idiocy that comes from trying to deal with the healthcare system. Same thing happens here in Australia. Hope the suggestions from some of the others may help you, anything’s worth a try, right? Praying for you

  18. My husband takes a chemo pill everyday along with immunotherapy every two weeks. He had the same feeling that he had burnt the inside of his mouth. The Dr told him to take over the counter zinc. It was much better in a couple of days. He continues to take it and has no issues anymore!

  19. What a mess you have had to deal with, and why would your blood be sent to Utah? wouldn’t you like to know who did what to make that happen. When one is sick the last thing they need to spend time on is medical missteps. I sure hope you get the itchy problem worked out, lots of ideas from readers. I have used the Zinc over the counter for a itchy mouth and it did work wonders. Prayers for a good medical update on the 5th.

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