The Mohs Nose

After I posted Just Nosing Around, I joined a Facebook group for Skin Cancer Warriors. I was amazed how supportive they are. I never had any support with Cushing’s or Kidney Cancer pre-op, so it was really nice to be on the receiving end for once.

From that FB group, I learned that May is Skin Cancer Awareness Month and there is a fundraising page (of course) so I actually decided to give it a try. I figure at least it will be another tshirt. LOL This is my page, if anyone is interested: Skin Cancer: Take a Hike!

Sunday, April 25, 2021. I’ve been reading that handout I posted (below) and it’s made me start looking around for shirts that button, rather than pull over the head. I mostly have tshirts and some of those necks are pretty tight. I think I’m ok for at least tomorrow and the next few days.

Also, in preparation, I downloaded some books for my Kindle and started a few coloring images in Happy Color so that I wouldn’t have to use WiFi to download there.

Also, I remembered that I should stress dose tomorrow! I started packing my bag to include Tylenol and I’ll add extra cortisol, a bottle of ice water and my iPad tomorrow.


So, Monday, April 26, 2021 I had my Mohs Surgery.

I remembered to take my extra cortisone! We got there 30 minutes early, which worked in our favor – for once.

Tom could go in with me while I had my surgery and I stayed in room the whole time. The nurse came in and we went over basic questions. The surgeon came in and recognized where the location was – he could see it over the top of my mask. He explained what he’d do and asked if there were any questions, then used a marker to make a circle around the cancer.

He injected the pain killer. I started when it first went in but then it was ok. He asked if I could feel anything. I said no so he continued.

They bandaged everything, cauterized the blood vessels and took the cancer off to the lab.

When they came back, the surgeon said that the cancer was gone. He used dissolvable stitches and a skin graft. I could see quite a bit of blood during this. He did more cautery and the nurse put on lots of bandages which I had to keep on for 24 hours. Because of the skin graft, he called in antibiotics.

Tom drove home – it was hard for me to see over bandages. About 1 pm I took 3 Tylenol. I took first antibiotic about 2 pm – Doxycycline Hyclate 100 mg. I take those twice a day for 10 days because of the skin graft.

Then, I fell asleep and woke up about 8:30PM and had some dinner. 3 more Tylenol and another antibiotic.

I slept ok overnight and woke up about 5:30 am with pressure from the bandages on my face. I tried to sleep for about another hour, then just got up. No real pain just a dull ache. If I touch my nose, it does hurt…so – don’t touch!

Tuesday, April 27, 2021, I kept my video off for my work Zoom meeting so no one would see all those bandages. I skipped an in-person afternoon meeting but about 4:00 pm I got to change the bandages so I could see what I’m dealing with:

Right at the bridge of my nose it’s a little bit swollen and it’s uncomfortable to wear my glasses. I had a handbell rehearsal Tuesday night that I also skipped.

Wednesday is normally one of the three days a week I do water exercise but I can’t get this thing wet so I stayed home and did a little work. I didn’t take the antibiotics with food, just with coffee, and that really upset my stomach. I ended up cancelling my piano students for the afternoon. They had all asked last week about the biopsy bandage – I wasn’t sure how I would explain this one to a first grader. My stomach was still upset from the antibiotic anyway.

I had bought new bandages on amazon that were supposed to be latex-free. I think they skirted around that claim somehow because as soon as I tried them, my nose was itchy. At first, I thought maybe my nose was healing but I ripped off the bandage and went back to the old plastic ones that made my nose red. The itching stopped but after that, I had a lot of trouble sleeping and finally just got up about 3:00 am.

Other healing pictures:

April 30, 2021:

May 2, 2021

Update May 7, 2021. Big Day – I finally went back to water exercise after nearly 2 weeks off and it felt so good to be back, to be normal. Besides that, I ran into my son’s elementary school music teacher (I had also been her piano accompanist) and we chatted about how things were going.

I also went (nervously!) to my main dermatologist for a full body scan and no other skin cancer was found.

May 8, 2021, Healing better than I thought it would.

May 24, I go back to my surgeon where I will (I hope!) get more good news. Assuming it’s good news, this post is done.

If not, there will be yet another update.


I wrote this April 24, 2021:

It seems like my nose is always at the forefront of my medical issues. Cushing’s disease? Let’s do a whole surgery through her nose.

Allergies? Let’s clog up her nose so she can’t breathe.

Kidney cancer? Let’s stick tubes up her nose so she can breathe.

None of that stuff did her in, so let’s try playing with the outside this time.

I hadn’t thought much about my nose lately unless I was adjusting a mask over it for COVID. Luckily, I was never tested for COVID because that would have been a swab…up my nose.

In January 2021, I was just keeping my nose out of other people’s business when I noticed weird stuff on my nose. I made the obligatory doctor appointment. He thought that part of my issue was allergies to paper masks and gave me cream – guess what!?!? – Kenalog, a steroid cream form of the stuff they inject into my knee. Part of the description for that reads “Do not use it on the face, groin, or underarms unless directed to do so by your doctor.” I was directed by my doctor so I guess it was ok but I sure hate using additional steroids.

In the middle of the nose-redness to be fixed by Kenalog was a really weird thing. The doctor thought it would be useful to use liquid nitrogen on it and I figured that was relatively easy so I went for it.

The morning before the liquid nitrogen

So, he sprayed the nitrogen on and said to use the Kenalog twice a day – the thing should fall off in a couple weeks. A couple weeks spread out to about 5 and it fell into my mask a day or so after I had a dream about it falling into the swimming pool and infecting everyone there. Fortunately, my dream didn’t come true!

Unfortunately, when it fell off, it left a hard red bump which stuck around and started looking weird again.

So, February 22, I called the doctor again and made an appointment for March 10. He said he could do the nitrogen thing again and go a bit deeper. I thought, maybe no. Let’s move on to the professionals. So, I got a referral to a dermatologist on April 16.

Even with my mask on, the dermatologist could see the top peeking out of my mask and proclaimed Squamous Cell Carcinoma! She did do a biopsy, so I had a few days of hope. I thought the biopsy would be a smaller amount, though.

So, I put Aquaphor and a bandage on my nose twice a day…and my nose got red under the bandaid. Allergy to the adhesive? I know I’m allergic to latex, so we have plastic bandaids. Whatever.

April 21 I got the official results. The dermatologist was right the first time. Monday, April 26 I will have Mohs surgery.

Of course, I set out to watch this surgery on YouTube.


I downloaded the handbook mentioned at the above video. Find it at https://www.dartmouth-hitchcock.org/sites/default/files/2020-12/mohs-handbook.pdf.


Because I always “own” all my diseases, I bought a t-shirt which I will wear proudly. Of course, it has a butterfly and the words: “They whispered to her – you cannot withstand the storm. She whispered back – I am the storm.” and Squamous Cell Carcinoma Awareness.

I have so many t-shirts – not just for places but for causes, diseases, work, piano teaching… I hope this is the last non-fun one I get!

I am not anticipating any changes in this over the weekend so the next post will be sometime next week, after the surgery.

Thanks for any prayers, good wishes, whatever!

Just Nosing Around

It seems like my nose is always at the forefront of my medical issues. Cushing’s disease? Let’s do a whole surgery through her nose.

Allergies? Let’s clog up her nose so she can’t breathe.

Kidney cancer? Let’s stick tubes up her nose so she can breathe.

None of that stuff did her in, so let’s try playing with the outside this time.

I hadn’t thought much about my nose lately unless I was adjusting a mask over it for COVID. Luckily, I was never tested for COVID because that would have been a swab…up my nose.

In January 2021, I was just keeping my nose out of other people’s business when I noticed weird stuff on my nose. I made the obligatory doctor appointment. He thought that part of my issue was allergies to paper masks and gave me cream – guess what!?!? – Kenalog, a steroid cream form of the stuff they inject into my knee. Part of the description for that reads “Do not use it on the face, groin, or underarms unless directed to do so by your doctor.” I was directed by my doctor so I guess it was ok but I sure hate using additional steroids.

In the middle of the nose-redness to be fixed by Kenalog was a really weird thing. The doctor thought it would be useful to use liquid nitrogen on it and I figured that was relatively easy so I went for it.

The morning before the liquid nitrogen

So, he sprayed the nitrogen on and said to use the Kenalog twice a day – the thing should fall off in a couple weeks. A couple weeks spread out to about 5 and it fell into my mask a day or so after I had a dream about it falling into the swimming pool and infecting everyone there. Fortunately, my dream didn’t come true!

Unfortunately, when it fell off, it left a hard red bump which stuck around and started looking weird again.

So, February 22, I called the doctor again and made an appointment for March 10. He said he could do the nitrogen thing again and go a bit deeper. I thought, maybe no. Let’s move on to the professionals. So, I got a referral to a dermatologist on April 16.

Even with my mask on, the dermatologist could see the top peeking out of my mask and proclaimed Squamous Cell Carcinoma! She did do a biopsy, so I had a few days of hope. I thought the biopsy would be a smaller amount, though.

So, I put Aquaphor and a bandage on my nose twice a day…and my nose got red under the bandaid. Allergy to the adhesive? I know I’m allergic to latex, so we have plastic bandaids. Whatever.

April 21 I got the official results. The dermatologist was right the first time. Monday, April 26 I will have Mohs surgery.

Of course, I set out to watch this surgery on YouTube.


I downloaded the handbook mentioned at the above video. Find it at https://www.dartmouth-hitchcock.org/sites/default/files/2020-12/mohs-handbook.pdf.


Because I always “own” all my diseases, I bought a t-shirt which I will wear proudly. Of course, it has a butterfly and the words: “They whispered to her – you cannot withstand the storm. She whispered back – I am the storm.” and Squamous Cell Carcinoma Awareness.

I have so many t-shirts – not just for places but for causes, diseases, work, piano teaching… I hope this is the last non-fun one I get!

I am not anticipating any changes in this over the weekend so the next post will be sometime next week, after the surgery.

Thanks for any prayers, good wishes, whatever!

Covid Vaccine 2

 

Quick takeaway: I have adrenal insufficiency (one adrenal was removed with my kidney due to cancer, steroid-dependent (post-Cushing’s Disease), growth hormone insufficiency, panhypopituitary.  I had some issues after my first COVID-19 injection (Moderna) but not too bad.  My second injection was March 15, 2021.  This time I was smart and updosed on my Cortef (hydrocortisone) right after the shot.  My main side effects this time were chills, extreme thirst, fatigue…and a craving for salad(!)


Earlier in March, CVS sent out an email with a few questions to answer before confirming my March 15 appointment.  On March 14, they sent me a text and when I clicked on the link, it said I had answered all the questions already.  YAY

I got this information again from CVS:

On the day of your appointment:

•Please arrive early enough to check in before your scheduled appointment. Arriving late for your appointment may result in an extended wait time.

•Bring your ID and insurance card, voucher or other coverage

•Don’t forget a face covering—wearing it throughout your visit is required

•When you arrive, please check in at the pharmacy area inside the store or follow the signs for the COVID-19 vaccine

CVS tips for vaccine shots:

•Wearing short sleeves makes getting a shot easier and faster

•If you must wear long sleeves, dress in layers with the short sleeves underneath

Review the patient fact sheet about the specific vaccine you are receiving

What to do if you feel sick or have COVID-19 symptoms:

•Contact your health care provider immediately

•If your provider recommends it, get tested for COVID-19

Cancel your appointment

•Don’t come to the pharmacy

•Schedule a new appointment when you’re well

After your vaccine:

•Be prepared to stay for 15 to 30 minutes after the COVID-19 vaccination so you can be observed for side effects.

•If you experience side effects from your COVID-19 vaccine dose, you may find some guidance at Coronavirus: Vaccine, Prevention Tips & FAQs

•The CDC has created a way for you to report how you feel after the COVID-19 vaccination through a smartphone-based tool that uses text messaging and web surveys to check in with you. Learn about v-safe and sign up today.

 

Monday, March 15, 2021: When I got to CVS, I found that everything was very well run like before.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

This time I wasn’t met by anyone  at door but I knew from before where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 2 people ahead of me that I could see.  It went very fast.  I was in the little partitioned off area within less than 10 minutes.

The nurse asked if left arm was ok to use.

The shot was not quite as fast – I felt it a little but I am used to giving myself daily injections so this was no biggie..

The nurse said if I get a headache, take Tylenol only.  She also said to stay hydrated.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

This time I was smart – right after leaving the CVS I took a stress dose of Cortef (hydrocortisone).

Around 7 pm i noticed I had what I used to call a “lightning bolt headache”. There is pain in one spot of my head and it moves quickly down, through my brain and out.  I used to get these long ago and I didn’t even know they were a thing until I just looked them andy they are called “Thunderclap Headaches”:

Severe headaches that appear suddenly like a lightning bolt are a cause for concern. This isn’t a sharp pain that goes away as suddenly as it began, but a pain that comes on like a light switch or feels as if someone has hit you in the head with a hammer. 

Who knew – I thought I’d made them up.  I hope this was the only one.

I could not believe how thirsty I was for the first couple days.  My mouth felt like a desert so I drank lots of ice water which meant I needed to run to the bathroom a lot.  Sometimes, I didn’t quite make it.

I was so tired, I skipped my growth hormone injection.

About 10 pm I started being very cold.  I don’t know if that’s a symptom but I noted that on February 17, also.

My arm seems like it is more sore than last time.

About 3 am, I got up needing to get a drink of water and I was still so cold.  I was under 3 blankets, wearing a hoodie and a very warm knit cap.  I didn’t have the death dreams like last time but some that were work-related and all jumbled up.  This has to get done before that can, but then, this other thing happens, type thing.  I just got up, got a little hydrated and checked my emails.

As soon as I typed this sentence, I put my mittens back on.

Tuesday, March 16, 2021:  My arm was sorer than Monday and I was still feeling cold, sleeping off and on.  Still very thirsty.

I skipped my growth hormone injection again.

I had trouble sleeping, especially if I tried to roll over.

Wednesday, March 17, 2021:  We didn’t go to water exercise. I planned that this time, based on my reaction to the first shot.

I had a little headache, dizzy, congested, very tired, lots of brain fog, thirsty. I slept more until about 1 pm and I cancelled piano lessons for the day.  

After cancelling lessons, I went back to sleep. I was feeling cold but I don’t know if it was chills or really a cold. 

At that point, I realized I hadn’t eaten for 2 days or had any coffee!. 

For reasons that are very strange to me, I started craving tossed salad, specifically one from a certain local restaurant.  I have never in my life craved salad.  

I had some dinner (I was surprised that I could eat any) at 9:25 and did my growth hormone injection.  

I went to bed at 11 pm.  Tossed and turned all night.

Thursday, March 18, 2021: I’m a little more tired than usual but ok.  I spent time napping and working alternated through the day. My boss called and he’d just had his Johnson and Johnson shot on Tuesday.  The call was pretty funny because we both were brain foggy and trying to think of words.  His vaccine is the one-dose type – he was glad to get it but found it weird that he could actually feel the medicine going in.  That sounds to me more like it was injected into a vein than a muscle.

My DH went out to Domino’s and got some dinner – and finally, I got that salad!

Friday, March 19, 2021: Just the normal tiredness.  Hooray!  We went back to water exercise.  I took off my bandage for the first time and noticed that the site had bled a little. Oh well. While I was in the pool, I had another of those lightning headaches but didn’t get out of the pool for Tylenol because I knew it was quick.

Saturday, March 20, 2021: DH gets his second shot!

In 14 days, I’ll  be considered to be vaccinated.  April 8, we will go visit our new grandson in NYC without quarantining or testing.  


Info below from https://medshadow.org/covid19-vaccine-side-effects/  I’ve had the bold ones so far after the second injection.

Moderna

Moderna started Phase III clinical trials for its vaccine candidate in July. In earlier trials, nearly half of patients experienced common adverse effects like injection site pain, rash, headaches, muscle soreness, nausea and fevers after the second injection. These effects generally subsided within two days. CNBC spoke to a few individuals, some participating in Moderna’s trial and some in Pfizer’s trial who said much the same thing: the side effects were intense and included a high fever, body aches, bad headaches and exhaustion, but were worth it for protection from Covid-19.

In the FDA report published in December, the most common side effects were pain at injection site (91.6% of patients), fatigue (68.5%), headache (63.0%), muscle pain (59.6%), joint pain (44.8%), and chills (43.4%). Three patients experienced Bell’s Palsy, a sudden, and usually temporary, weakening or paralysis of the facial muscles.

A few patients with facial fillers experienced swelling after receiving the vaccine. They were treated with antihistamines and steroids. In California, officials halted the use of one particular batch of Moderna vaccines (lot 41L20A) after a small cluster (fewer than 10) of patients at one particular site experienced allergic reactions that required medical attention.

Out of the first 7.5 million doses administered from Dec 14- Jan 18, 19 cases of anaphylaxis were reported to VAERS after the Moderna vaccine. No patients have died from anaphylaxis. Patients are now being monitored for 15-30 minutes after receiving the vaccine to watch for signs of anaphylaxis.

Many patients are reporting injection site reactions that show up shortly after the injection or up to a week later. These reactions — which are characterized by swelling, redness, itching, rashes, heat and pain — are expected to last a day to a week. Physicians emphasize that while these effects can be scary, they are not dangerous and should not prevent someone from getting the second shot. So far, doctors do not report seeing these reactions after the second shot, however so few have been given so far that scientists are not sure how common it will be on round two.

The CDC reports that 11% of patients experienced swollen lymph nodes after the first shot. That raised to 16% after the second shot.

A study posted on Feb 1 showed that patients who received the vaccine after having been previously infected with COVID-19 showed greater immune response to the first shot and more intense side effects that are associated with strong immune responses like fever and muscle aches. The study included patients who received either the Moderna or Pfizer vaccine. Some scientists believe these patients may only need a single shot to provide sufficient immunity, but more research is needed.

Moderna has announced that it will begin testing its vaccine in children and adolescents, who they believe may have stronger immune responses, leading to more intense side effects.

This page has information about the other brands of vaccine: https://fairfaxcountyemergency.wpcomstaging.com/2021/02/16/what-you-need-to-know-when-you-get-vaccinated-and-after-you-get-vaccinated/

A really good article – Coronavirus Life: What To Expect When You Get Vaccinated Against COVID-19

Covid Vaccine 1 – DH

So I decided to write about my DH’s experiences with the COVID-19 vaccine.  Quick takeaway:  He has had a couple TIAs, a “roto-rooter” surgery on each carotid artery, heart attack, prostate cancer…

He had been waffling back and forth about even getting the vaccine.  Finally, a young woman from church signed him up, so he decided to follow through.  She is signing up all the eligible people she knows from our church.

He had the Pfizer vaccine on Saturday, February 27, 2021 at a different location than mine – I was actually surprised how much more efficient mine was than his.  I had assumed that they would be about the same. 

My CVS experience:

When I got to CVS, I found that everything was very well run.

I got a text from CVS asking me to click a link when I arrived at 3:30 and it gave me directions on where to go.

I was met by someone at door who checked my name – I showed him my phone screen – he showed me where to walk following arrows on floor.  Then I was met by so someone who checked my name and he asked if I had done the texting thing (yes!).

There were 4 people ahead of me that I could see.  It went very fast.  I was in the little room within less than 10 minutes.

The nurse asked if left arm was ok to use.

She told me to treat the little quarantine form like gold.  Take a picture on my phone, just in case.  Maybe laminate after second shot.  Keep it with passport.

She said that old folks (like me!) didn’t have as many issues after second shot.

The shot was very fast – I never felt it.

The nurse said if I get a headache, take Tylenol only.  I said that was all I could take anyway because I have only one kidney.

I sat in the waiting area for 15 minutes to be sure there were no problems  There were about 10 or so people sitting around the store that I could see at various stages of their 15 minutes.

We arrived for DH’s shot about 5 minutes early – There was no indication outside the store, or on any of the doors, that even said that this place offered injections.  When we got inside, nothing.  We guessed that it would be at the pharmacy, in the back.  Next to the pharmacy was a Quest, like Quest Diagnostics, I thought.  DH went in there and was told to check in at the pharmacy.  He waited behind people filling prescriptions and asking questions about them.  Finally, they took his check-in form and they gave him a ticket for the shot.  Then, back in the Quest room.

While he was waiting, I talked to a woman who had just gotten her vaccine. She had no idea how long to wait – unlike CVS where all the chairs had attached timers and someone checking on you and telling when you could leave.

When DH came out (he didn’t wait at all!), he didn’t have a second appointment.  The CVS version, I signed up for both before the first injection.  We were walking up the aisle and he’d lost his card already.  We went back to Quest and he found it.  It’s not in a special pocket of his wallet.

As a special treat, we ate out at an old favorite restaurant of ours, where we hadn’t been in nearly a year.  We used to eat there almost every Friday night – and they remembered us!

Later that night he was thinking about it – and got a little headache.  Meanwhile, our young friend secured his second appointment.

Like me, he was fine the next day but the third day (today) fatigue set in.