Transitioning at work and in all of my life

[Danya (imported)]

I have fond memories of Vera's as well. The barista couldn't believe I wanted five T-shirts. My youngest nephew got in so much trouble for wearing his to school!

Oh? Must have been "provocative" in some way, Paolo.

[kristoff]

Oh? Must have been "provocative" in some way, Paolo.

I don't remember exactly what it said, but remember thinking "I am not wearing that to work." Give my memory a kick Paolo.

[Paolo]

It had a screened image, white on black, of a face sipping a coffee cup with a cream design and said "Strong, Hot, Full of Cream" and "Vera's Cafe" below it.

[Danya (imported)]

June 20, 2022 - So my life with my husband (H) was going along smoothly until . . .

[I'm not certain I have ever referred to my husband much on any thread or what initial I may have used for him. Today I don't have the desire to do a search.]

. . . 2 1/2 weeks ago I insisted H go to urgent care (UC) because of the awful wheezing he was experiencing. I have asthma; his wheezing didn't sound like asthma but was maybe much more localized in one part of one lung. The UC doctor found the wheezing was confined to one part of H's upper left lung. She followed up with an x-ray and CT scan. The tentative conclusion was an upper left lung malignant tumor about the size of H's fist.

Last week he had a PET/CT scan with which the radiologist got a different look at the presumed malignant tumor; the entire lung was examined for lymph node involvement but none was found.

Today, H had a bronchoscopy procedure on his left lung for two purposes:

1. To recover living cells from the presumed tumor for a biopsy: the pathologist determined that the recovered tissue is in fact malignant.

2. Examine nearby lymph nodes to see if any were cancerous: none were, which is very good news.

Tomorrow, H will have an MRI of his brain to determine if lung cancer has spread there. For a reason unknown to pulmonologists, lung cancer has a particular affinity for brain tissue.

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Writing all t

his out somehow distracts me from all that is going on.

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H and I are helping each other (for the most part anyway;)) live in the moment. My thoughts dump of tests and results is a fairly brief exception. Generally, I'm reasonably good at this 'in the moment' thing.

[WheelyCurious]

Very sorry to hear this bad news! I hope they are able to treat you husband successfully to get rid of the cancer!

I really understand what you are going through right now, as I went through (and am still having to deal with the results) something similar. Early in the lockdown, I spotted a lump on my GF's chest that turned out to be nodular melanoma... Much extra headache dealing with this during the first big surge of infections.

After some surgery they put her on "Keytruda" and she had one of the fraction of 1% bad reactions where instead of her jacked up immune system attacking the cancer, it attacked her optic nerves, leaving her legally blind.... It really sucks being part of a MULTI-disability household....

Fortunately they tried a different treatment on her, which so far has worked, she now has had multiple physical checks and a couple of PET scans that have come back clean, hopefully it will continue!

WheelyCurious

[Danya (imported)]

Very sorry to hear this bad news! I hope they are able to treat you husband successfully to get rid of the cancer!

Thanks WheelyCurious

I really understand what you are going through right now, as I went through (and am still having to deal with the results) something similar. Early in the lockdown, I spotted a lump on my GF's chest that turned out to be nodular melanoma... Much extra headache dealing with this during the first big surge of infections.

After some surgery they put her on "Keytruda" and she had one of the fraction of 1% bad reactions where instead of her jacked up immune system attacking the cancer, it attacked her optic nerves, leaving her legally blind.... It really sucks being part of a MULTI-disability household....

How awful for your GF and for you! An oncologist might suggest using Keytruda or another immunotherapy drug on my husband. Doctors always tout a less than 1% side effect rate as being "rare" but it's only rare until it happens to you. I'm sorry to learn both you and your GF are now disabled.

Fortunately they tried a different treatment on her, which so far has worked, she now has had multiple physical checks and a couple of PET scans that have come back clean, hopefully it will continue!

WheelyCurious

Best wishes for continued clean physical checks and PET scans for your GF.

Thanks for posting!

[WheelyCurious]

I don't think there is anything inherently wrong w/ Keytruda or any of the other immunotherapies, and they seem like better options than the older chemotherapy drugs...

In retrospect though, I think they should have been far more aggressive in treating my GF when she first started to lose her sight. When it first happened they just hit her w/ massive doses of steroids (which caused her to lose a lot of mobility as they wiped out a lot of her hip muscles) which seemed to stabilize her for a little while but she got worse again as soon as they started getting her off the steroids. Then they put her through extensive electrophoresis (spell?) to filter the Keytruda out of her system, and her remaining vision has been stable since... So to me it seems like the big lesson is that a bad reaction needs to be jumped on hard and early...

I also got really upset w/ her oncologist as he didn't think it was important to report the adverse reaction 'because it was already described in the literature' - If bad reactions aren't reported how do we know if they are as unusual as claimed... It probably wasn't as useful as if the doctor had reported it, but I did, as the FDA adverse reaction site does allow patients and caregivers to report as well as doctors...

So I'd just urge you to be sure to act quickly if they put your husband on immunotherapy and you spot any signs of bad reactions.

WheelyCurious

[Danya (imported)]

I don't think there is anything inherently wrong w/ Keytruda or any of the other immunotherapies, and they seem like better options than the older chemotherapy drugs...

In retrospect though, I think they should have been far more aggressive in treating my GF when she first started to lose her sight. When it first happened they just hit her w/ massive doses of steroids (which caused her to lose a lot of mobility as they wiped out a lot of her hip muscles) which seemed to stabilize her for a little while but she got worse again as soon as they started getting her off the steroids. Then they put her through extensive electrophoresis (spell?) to filter the Keytruda out of her system, and her remaining vision has been stable since... So to me it seems like the big lesson is that a bad reaction needs to be jumped on hard and early...

I also got really upset w/ her oncologist as he didn't think it was important to report the adverse reaction 'because it was already described in the literature' - If bad reactions aren't reported how do we know if they are as unusual as claimed... It probably wasn't as useful as if the doctor had reported it, but I did, as the FDA adverse reaction site does allow patients and caregivers to report as well as doctors...

So I'd just urge you to be sure to act quickly if they put your husband on immunotherapy and you spot any signs of bad reactions.

WheelyCurious

Hello again, WheelyCurious,

Thanks very much for your additional pointers on immunotherapies and most especially when to go into rapid action mode when there a side effects.

H's ex-wife is prescribed immunotherapy treatment for her bladder cancer and it's worked well for her. I have experience with old-style chemotherapy that left me with high fevers and hemolytic anemia, leaving me barely able to walk.

Danya

[WheelyCurious]

You're welcome, glad to hear the good news about H's ex... Seems to me that when the immunotherapy stuff works it is really effective, and seems like a big improvement over the old style treatments.

The downside is just that it can go wrong in strange ways and cause big issues when it does.

WheelyCurious

[Danya (imported)]

June 24, 2022 - - update on my husband (H)

On Monday, H had a biopsy of the mass in his lung and some lung lymph nodes. The more detailed pathology report on the lung mass, released yesterday, showed that H has the more dangerous type of lung cancer: small cell lung cancer. H’s pulmonologist said you definitely don’t want this type of lung cancer. It’s very, very bad news. Life expectancy for those with small cell lung cancer is, on average, much shorter than for those with the other major form of lung cancer (non-small cell lung cancer) in part because it is so aggressive, grows quickly, is difficult to treat, and metastasizes easily (thank goodness it hasn’t yet done that in H). The biopsies of the lymph nodes were good news, confirming that the cancer had not spread to the lymph nodes.

From what we've heard from the hospital so far, the treatment will be chemotherapy given at the same time as radiation.

[This may have been stated in a previous post: On Tuesday, H had an MRI scan of his brain to look for lung cancer spread there. There was no cancer detected, which was more good news].

On July 1, we will have an initial visit with an oncologist to discuss things like treatment options, quality of life, and life expectancy (government papers indicate that this is at 2 years, on average, about 23% survival for this type of cancer. The survival rate may be higher now with advances in treatment. We hope so!) There are a bunch of other questions we will cover in the one-hour visit).

So we have had some good news and what was likely really bad news.

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I find it a little strange that I feel more alive now that H is in dire straits. There's no way I'd wish this on anyone but we have no choice but to deal with things as they are. I've already been a strong advocate for H several times and I've found that being able to make positive things happen amid the current disaster of our lives is very satisfying.