Transitioning at work and in all of my life

[Danya (imported)]

I just noticed two typos in my previous just posted post. I will proofread more completely next time. At least that's my hope.

[Paolo]

When in doubt, just quote Paul Simon's song: I can call you Betty, and Betty, when you call me, you can call me Al.

[Valery_V (imported)]

When in doubt, just quote Paul Simon's song: I can call you Betty, and Betty, when you call me, you can call me Al.

Paul Simon - You Can Call Me Al (from The Concert in Hyde Park)

https://www.youtube.com/watch?v=PS-sE9x ... lSimonVEVO

[Danya (imported)]

When in doubt, just quote Paul Simon's song: I can call you Betty, and Betty, when you

call me, you can call me Al.

Paul Simon - You Can Call Me Al (from The Concert in Hyde Park)

https://www.youtube.com/wa

tch?v=PS-sE9xCb-g&ab_channel=PaulSimonVEVO

This (transgender) woman is ignorant of a large body of pop, rock, country, etc. music. So I will humbly admit that I never heard of "You can call me AL... ." But I found myself really enjoying Paul Simon's Hyde Park performance of the song. Way cool for this 70-year-old! I have always liked the music of Simon & Garfunkel and much of Simon's solo works.

I'm heavily into classical music, jazz, 20th-century music, and contemporary chamber and orchestral works. More on that in a later post.

[quote="Danya (imported)" time=163[quote="Danya (imported)" time=

1655756520]
2170640]
[quote="Danya (i

mported)" time=146
[/quote]
2804800]

[quote="Danya (i

mported)" tim

e=1275015480]
________________________
[/quote]
__________________________ __________________________________________________
[/quote]
__________________

My husband (H) finished his initial chemo and radiation therapy treatments several weeks ago. He's slowly regaining his strength. In another three weeks, he'll have a CT scan of his upper left lung to determine how effective his treatment was at destroying the large tumor there. Assuming the treatments eradicated the tumor, it will be time for radiation therapy of his brain. Lung cancer has an affinity for brain cells.

The clinic is also talking about doing a clinical trial of an immunotherapy agent.

[WheelyCurious]

Hopefully your husband's results will be good ones!

I have to admit to very mixed feelings about immunotherapies - my GF got nodular melanoma, and the first immunotherapy they put her on (Keytruda (SP?)) caused her immune system to attack her optic nerves, not the cancer. As a result she is now legally blind... However they then put her on a different immunotherapy that was based on injecting a modified herpes virus directly into the tumors, and that worked wonderfully, she's going on a year w/o the cancer coming back...

There is also an Israeli outfit called Novocure, that has developed some new technology that uses 'electrical fields' on certain cancer types, including at least one sort of brain cancer. The description sounds a little hokey, but they've gotten some FDA approvals and are in various stages of testing for more different cancers... Might be worth looking into. (Full disclosure, I own a little of the stock in my IRA, which is how I know of it...)

WheelyCurious

[Danya (imported)]

Hopefully your husband's results will be good ones!

I have to admit to very mixed feelings about immunotherapies - my GF got nodular melanoma, and the first immunotherapy they put her on (Keytruda (SP?)) caused her immune system to attack her optic nerves, not the cancer. As a result she is now legally blind... However they then put her on a different immunotherapy that was based on injecting a modified herpes virus directly into the tumors, and that worked wonderfully, she's going on a year w/o the cancer coming back...

There is also an Israeli outfit called Novocure, that has developed some new technology that uses 'electrical fields' on certain cancer types, including at least one sort of brain cancer. The description sounds a little hokey, but they've gotten some FDA approvals and are in various stages of testing for more different cancers... Might be worth looking into. (Full disclosure, I own a little of the stock in my IRA, which is how I know of it...)

WheelyCurious

Thanks, WheelyCurious for your helpful post. I knew from an earlier post of yours, your GF had an extremely bad initial experience with immunotherapy. But I don't think you mentioned the later treatment with the modified herpes simplex virus. These latest developments in treating cancer amaze this old-timer.

I appreciate the information on the work coming out of Israel. I don't at all mind that you have an investment there.

[Danya (imported)]

Within the last week, I've been given the diagnosis of nonmelanoma skin cancer on the very top of my left ear. This means it's likely easily treatable, although it may involve removing only a small (I hope) part of my ear.

I'm not at all happy that the soonest dermatologist appointment I could get in my usual clinic is four months from now. Over the years I've learned that rather than sitting around and getting depressed about something the best solution is to take action.

I will go to a rival clinic's (the one that's treated my husband's cancer) Urgent Care to 'get a second opinion.' They will be able to refer me to the same cancer clinic that treated my husband or, at the very least, another dermatologist. My hope is that the rival clinic or dermatologist will be able to see me in less than four months.

[WheelyCurious]

Within the last week, I've been given the diagnosis of nonmelanoma skin cancer on the very top of my left ear. This means it's likely easily treatable, although it may involve removing only a small (I hope) part of my ear.

I'm not at all happy that the soonest dermatologist appointment I could get in my usual clinic is four months from now. Over the years I've learned that rather than sitting around and getting depressed about something the best solution is to take action.

I will go to a rival clinic's (the one that's treated my husband's cancer) Urgent Care to 'get a second opinion.' They will be able to refer me to the same cancer clinic that treated my husband or, at the very least, another dermatologist. My hope is that the rival clinic or dermatologist will be able to see me in less than four months.

If it's 'Basal Cell' skin cancer, which is what it sounds like from your description and the location (it usually shows up in places w/ higher than usual skin exposure, ears and nose are particularly common) it is not a big panic issue... Basal Cell is very slow growing and generally not very dangerous. I know a lot of folks that have had it, gotten treated and all said it wasn't a big deal... It is worth noting that normally it is something dealt with by a dermatologist, it isn't bad enough to 'rate' an oncologist.

Often they don't even do surgery to remove it, instead they freeze it with liquid nitrogen. My GF had a small patch of it in addition to her other cancer, and I was there when they treated it - several months after they first spotted it! The doctor had a sort of 'spray gun' gizmo that he spritzed the cancer with for a few seconds, waited a couple of minutes, and repeated... Time with the doc was maybe 20 minutes, most of which was explaining the procedure and doing the consent paperwork. Afterwards the cancer area just kind of dried up into a scab that fell off in a couple of weeks. The GF said it was uncomfortable but not particularly painful...

While it never hurts to get a second opinion, I'd suggest that if the faster clinic would cost you more out of pocket, that it probably isn't worth it....

WheelyCurious

[Danya (imported)]

If it's 'Basal Cell' skin cancer, which is what it sounds like from your description and the location (it usually shows up in places w/ higher than usual skin exposure, ears and nose are particularly common) it is not a big panic issue... Basal Cell is very slow growing and generally not very dangerous. I know a lot of folks that have had it, gotten treated and all said it wasn't a big deal... It is worth noting that normally it is something dealt with by a dermatologist, it isn't bad enough to 'rate' an oncologist.

Hi WheelyCurious,

It's the "

If it's 'Basal Cell' skin cancer

" that bothers me. Not that you wrote it, of course, but the Mayo Clinic website page on squamous cell cancer (url: https://www.mayoclinic.org/diseases-con ... c-20352480) states that this potentially more dangerous carcinoma frequently occurs on the ears and lips.

Often they don't even do surgery to remove it, instead they freeze it with liquid nitrogen. My GF had a small patch of it in addition to her other cancer, and I was there when they treated it - several months after they first spotted it! The doctor had a sort of 'spray gun' gizmo that he spritzed the cancer with for a few seconds, waited a couple of minutes, and repeated... Time with the doc was maybe 20 minutes, most of which was explaining the procedure and doing the consent paperwork. Afterwards the cancer area just kind of dried up into a scab that fell off in a couple of weeks. The GF said it was uncomfortable but not particularly painful...

This treatment sounds terrific and much better than cutting out the skin cancer.

While it never hurts to get a second opinion, I'd suggest that if the faster clinic would cost you more out of pocket, that it probably isn't worth it. .

. WheelyCurious

If both clinics determine that my skin cancer is basal cell, I agree. If the 'second opinion' clinic determines squamous cell I would go with them if they'd get me to see a dermatologist much sooner.

Thanks for your thoughts!

[WheelyCurious]

Sounds like a reasonable plan... Given that the first clinic didn't seem terribly worried, I'd be inclined to think basal cell, but that''s just guessing on my part... (and I don't even play at being a Dr. on TV... )

As an intermediate thing, would it make any sense to call the first clinic and ask if they can be any more specific about their diagnosis than 'non-melanoma'. Perhaps ask specifically if they think it's basal cell, and if there is any chance of it being squamous instead?

WheelyCurious

[Danya (imported)]

My husband (H) had scans today (10/24/22) to determine how well the treatments went for his lung cancer. This included scans of his left lung for any remaining tumor and a brain MRI for any macroscopic lung cancer that may now have appeared in that location.

We are excited to discover tomorrow how well he did and what the next steps in his treatment will be. At the same time, we enjoyed the last six weeks with no cancer treatment[q

[quote="Danya (imported)" t

ime=1656104760]
uote="Danya (im

ported)" time=1632170640]
s[

quote="Da

nya (imported)" time=1461099600]
.

__________________________

________________________
[/quote]
__________________

H and I s

topped at a good yet inexpensive Italian restaurant a

fter his tests this morning. They had rock music from [quot

e="Danya (imported)" time=1656104760]
the 60's and 70's playing. I was surprised when I kn

ew band names before my husband recognized them. Turn

s out I know a bit more about rock music than I suspe

cted. Especially a lot of Beatle

s songs. Who knew?

[quote="Danya

(imported)" time=1275

015480]
______________________________

____________________

________________

As I drove
[/quote]
to the pharmacy this afternoon there was a Hay

dn symphony playing on the local public radio station.

I have never been a fan of most of Hadyn's music a

nd, although it is wonderfully crafted, it's seldom s

poken to my musical spirit. Being forced to learn a H

aydn piano sonata when I was in college did not make

me like his music more. Anyway, I went into the pharm

acy and purchased what I needed, paid for it, and went back out to m

y car. The Haydn symphony was over.

__________________________________________________

_______________

In its place, the public radio station was pla

ying Brahms' "Academic Festival Overture." Although I am a huge fan o

f Brahms I have never been particularly fond of this piece. I always thought it cool that

it is based on German student drinking songs. But the orche

stral versions I have heard before all seemed to have a too-staid tempo. It is almost like the stude

nts were too drunk to sing more.

The version I h

eard today on the radio really picked up the tempo, and it made a big difference in bringing out the joyfu

l exuberance of the music.

The overture had just

finished as I was pulling into our garage at home. As I got out of the car I found myself whistling again

as I had on hearing the overture by Brahms. It remind

ed me of the time when I had changed my name legally at the County Courthouse and I had come out of the bu

ilding whistling and wondering if whistling was appropriate for women

to do. Now I decided I didn't care if it was appropriate or not, I was going to do it.

__________________________________________________

________________

A week or two ago, I spent several hours playing the piano. That kind of time of intent investment in music-making usually gets my own creative juices flowing.

As I undressed so I could take a shower, I took a moment to admire my female form in the mirror. [This is not something I do often enough.] Somehow, this further enhanced the creativity I was feeling.

I started whistling some random symphonic pieces by different composers. I felt elated.

I got into the shower and then something happened that has not happened to me since college. I started to hear musical instruments but not as one might imagine hearing them. Rather, I heard them with me as if they were in the room. Sometimes they played bits of music I knew; at other times it seemed that I was developing the start of my own compositions.

This latest experience reminded me that I want to try my hand at music composition. With the proper intense musical stimulation first, I may be able to write down the notes of my ideas and work them into more complete compositions at a later day.

[Danya (imported)]

Song from the winner (I almost have an orgasm from it

Bee Gees - Massachusetts (1967)

https://www.youtube.com/watch?v=knFS8reh5oY

I love many of the Bee Gees' songs, including Massachusetts!

[quote="Danya (impor[quote="Danya (imported)" post_id=79201 time=1666669080 user_id=3086]
ted)" time=1664670360]
[quote="Dany
[/quote]
a (imported)" time=1656903900]
[quote="
[/quote]
Danya (imported)" time=1656104760]

[Danya (imported)]

There are times when I wonder if, just maybe, I've been living in La-La Land regarding my husband's (H's) cancer from its initial diagnosis 5 months ago and continuing with his ongoing chemo brain.

Don't get me wrong, I know I'm resilient. After all, I have been told so by three psychologists and one psychiatrist. The fact that I pay these people does not make their opinions suspect.

Both H and I are now ready to be done with the whole cancer thing. We hope we will be after H's medical oncologist, on 1/6/23, tells us the result of his 1/3/23 PET scan. The PET scan will be done to determine if the remaining mass in his lung is scar tissue (the expected outcome) or if there is still an active lung tumor.

There was a time, early on our shared cancer journey, when I thought PET scans were "cool," because what is detected is the annihilation event of an electron and its antimatter equivalent, the positron. Now all I care about is what the scan will show.

[quote="Danya (impor

ted)" time=1664670360]

[quote="Danya (imported)"

time=1656104760]
[quote="Danya (imported)"

time=163[quote="Danya (imported)" time=

1655756520]
2170640]
[quote="Danya (i
[/quote]
mported)" time=146
[/quote]
2804800]

________________

__________________________________ _________________

_________________________________
[/quote]
_________

I will have other things to report in another post including:

Was I given permission to practice my church's new, supposedly world-class (maybe second-tier) pipe organ?

What did I say to a non-trans woman friend at church about her outfit and how did she respond?

What's going on with my cute Physical Therapist?

Etc.

My post will be, for the most part, more light-hearted than this but not as frivolous as the list might suggest.

[Danya (imported)]

We learned in mid-January that my husband's cancer is considered "cured," as stated by his medical oncologist. Maybe this is a new designation for "in remission" because H must go for periodic testing to see if the cancer is still undetectable. We are thrilled with this "cured" designation, nonetheless.

The downside is that H is still experiencing symptoms of "chemo brain" or "cognitive dysfunction.

We are hopeful that his cognitive dysfunction will abate within the next year or less.

[quote="Danya (impor

ted)" time=1664670360]

mported)" time=163[quote="Danya (imported)" tim

e=1655756520]
2170640]
[quote="Danya (i

mported)" time=146

2804800]

________________

__________________________________ ____________

_______________________

_______________

____

Back when I didn't wa

nt to leave H

alone when he was undergoing both chemo and radiation therapy [quote="Danya (imported)" ti
[/quote]
me=1666669080]
for cancer, two women friends

volunteered t

o stay with him for several hours while

I went shoppi

ng for some new winter clothes. I'll adm

it that I lov

e clothes shopping but I actually needed some new tops because I had, ahem,

gained some weig[quote="Danya (imported)" t

ime=1632170640]
ht. I found about six gorgeous new tops that I've been

enjoyin

g wearing this winter. And it turned out tha

t H enjoy

ed chatting with both women while I was gone.

___________

_______________________________________ __________________________________________________
[/quote]
_____

This coming Monday, March 13, I'll have the opportunity to practice on my church's new pipe organ for the first time. I can't wait.

[Paolo]

This is great news!

Thanks for updating us.

[WheelyCurious]

FANTASTIC NEWS!!! I'm really glad to hear th

at things are going so well for you.

I know about the ongoing check drama as my GF and I go through the same thing in regards to her melanoma, with the last 3 PET scans being clean, as well as the periodic 'skin checks' by her dermatologist.

Unfortunately her vision is not expected to improve. She had her first visit with a new neuro-opthamologist the other day and says that according to him her existing vision is so bad that she is to close to the bottom of the scale for him to be able to tell if it is getting worse... On the good side, she is showing slight improvement with her physical therapy, to the point where she keeps getting more appointments.

WheelyCurious

[Danya (imported)]

This is great news!

Thanks for updating us.

FANTASTIC NEWS!!! I'm really glad to h

ear th

at things are going so well for you.

I know about the ongoing check drama as my GF and I go through the same thing in regards to her melanoma, with the last 3 PET scans being clean, as well as the periodic 'skin checks' by her dermatologist.

Unfortunately her vision is not expected to improve. She had her first visit with a new neuro-opthamologist the other day and says that according to him her existing vision is so bad that she is to close to the bottom of the scale for him to be able to tell if it is getting worse... On the good side, she is showing slight improvement wi

th her physical therapy, to the point where she keeps getting more appointments.

WheelyCurious

Paolo and WheelyCurious, It is indeed terrific news. The thing that surprises us is that H has not been offered the chance to join an immunotherapy clinical trial.

WheelyCurious, I remember that your girlfriend's vision problem began as a result of an immunotherapy clinical trial. I'm sorry to hear there's no chance of her vision improving and that it is so poor.

I'm doing physical therapy for three body areas. PT often, but not always, works for me. Now when I practice floor exercises and have a little trouble getting up, the therapist is able to lift me back to a standing position.

[WheelyCurious]

Her vision loss wasn't a clinical trial - it was from Ketruda, (sp?) which is a 'mainstream', FDA approved drug that is even heavily advertised.... Arguably that should have raised a red flag for us, given that "As Seen on TV" usually translates to "doesn't work right"....

Her oncologist didn't want to file an "adverse drug reaction report" with the FDA, as he claimed her problem was "already described in the literature" as a fraction of 1% bad outcome risk... I couldn't get an answer out of him about how they knew it was that rare of a reaction if the doctors like him weren't reporting it.... However the adverse report system is 'voluntary' so no way of telling that I can see. (For whatever it was worth, I DID file a report...)

WheelyCurious

[Danya (imported)]

As I looked over a few early pages of this thread I realized something major is missing. Namely any talk about struggles I had in arriving at my decision to transition.

I remember writing about how in the world I went from identifying as a gay male to the happy place I was in when I started "Transitioning at work and in all of my life." I have no idea what happened to those posts.

As I continue this thread I will recreate some of those early trials.

[quote="Danya

(impor[quote="Danya (imported)" time=

1666669080]
ted)" time=1664670360]

[Losethem (imported)]

I'm sorry to hear you're having these challenges. I hope you're able to stay as active as you wish to be for some time to come, and able to do those things you wish to do.

[WheelyCurious]

I am very sorry to hear this, I hope you continue to do as well as possible.

That said, I do suggest to anyone having to deal with progressive illnesses that you think long term when planning any purchases of adaptive equipment or making home / vehicle modifications, and so forth. Some things like mobility devices pretty much have to be obtained repeatedly to match your condition as it changes, but at least those are often covered by insurance.

Other things, it can be best to think about what the long term prognosis is and planning around that. The basic idea is that by doing things like home modifications so that they meet projected needs rather than your current situation often will cost little more, and saves the expense and hassle of needing to do them multiple times...

This is practical experience based advice from other users on disability related forums I'm on.

If you would like me to try answering any questions about mobility stuff, feel free to ask either in this thread or PM, I'd be happy to help as much as I can.

WheelyCurious

[Danya (imported)]

I'm sorry to hear you're having these challenges. I hope you're able to stay as active as you wish to be for some time to come, and able to do those things you wish to do.


[/q

uote]
Thanks, Losethem. I appreciate your good wishes.

I am very sorry to hear t

his, I hope you conti

nue to do as well as possible.

Thank you, WheelyCurious.

That said, I do suggest to anyone having to deal with progressive illnesses that you think long term when planning any purchases of adaptive equipment or making home / vehicle modifications, and so forth. Some things like mobility devices pretty much have to be obtained repeatedly to match your condition as it changes, but at least those are often covered by insurance.

Other things, it can be best to think about what the long term prognosis is and planning around that. The basic idea is that by doing things like home modifications so that they meet projected needs rather than your current situation often will cost little more, and saves the expense and hassle of needing to do them multiple times...

This is practical experience based advice from other users on disability related forums I'm on.

If you would like me to try answering any questions about mobility stuff, feel free to ask either in this thread or P

M, I'd be happy to help as much as I can.

WheelyCurious

Your advice is sensible and practical for those with progressive diseases. Mine might not be truly Parkinson's and even if it is the future course varies among folks. At this point, it's too soon to say what my prognosis is.

[kristoff]

As I looked over a few early pages of this thread I realized something major is missing. Namely any talk about struggles I had in arriving at my decision to transition.

I remember writing about how in the world I went from identifying as a gay male to the happy place I was in when I started "Transitioning at work and in all of my life." I have no idea what happened to those posts.

As I continue this thread I will recreate some of those early trials.

(impor[quote="Danya (imported)" time=

1666669080]
ted)" time=1664670360]

[Danya (imported)]

For what it is worth, I now use a walker as well, though at times I get along OK with a cane. My doctor was also hinting at Parkinsons, but hasn't drawn any conclusions. It sux getting old - BTW, I am 69 today - but it is better than inhabiting another place. Best wishes to you!

K

Kristoff, I will have a DATscan in August, the definitive test for "somewhat" progressed Parkinson's. At the end of June, I will be 71 1/2. Yes, growing old sux. Thanks for the good wishes.

[WheelyCurious]

Glad to hear you are getting the testing needed for a more definite diagnosis... Hopefully it will turn out that you have something not as bad...

I'm not an expert on Parkinson's, but I know that the progression of it varies a lot between patients. However most of us don't have crystal balls in perfect working order, and there isn't any good way to tell how things will end up going. OTOH, one of the realities of doing adaptive mods is that the cost of doing a partial modification is going to be about the same as a 'worst case' one. But if you do a partial mod, and then need a more severe one, you will have about the same costs as if you hadn't done anything - in other words what you spent on the partial modification will be wasted... So it makes the most sense to keep that worst modification in mind, and either go there, or choose a path that minimizes the number of added steps...

WheelyCurious