Family news ..

[scooperhsd]

1. MIL (the one with moderate dementia) has been saying to her ex husband (that she usually has 2 meals per day with) that she is thinking it's time for a long-term care facility so she won't be a burden on anyone (except the staff - she is really an independent minded woman). There is an appointment scheduled with her geriatric dr on Sept 7 and we (or just the wife, who holds financial and medical POA's) will be asking about what we should do. Have started researching facilities (memory care), but not making any commitments yet. MIL hasn't said anything to us about it yet.

2. Wife - (I've told a couple of you most of this) -
at the beginning of the summer, Gwen started having pain in her abdomen, especially when eating. Saw Primary care, who sent her for ultrasound, and also to Ob/ Gyn Dr. Big mass in uterous area. Gyn Dr did a D & C, found lots of white tissue inside  - enough to make uterous twice normal size. D & C took care of almost all of the pain, but there was a 50 / 50 chance of cancer being there  - samples sent to one pathologist and then a second for confirmation - they found some cancer. Seems to be slow growing, as her appointment with the oncologist is Sept 14. The Ob/ GYN said they will probably do a hysterctomy, with a pathologist in the OR, and it will probably be laproscopic. If it hasn't gone more than half through the uterine wall, it likely hasn't spread and this will be end of it.

If you want to send Gwen something email is pengwenhsd at gmail.com

[Rams]

Keeping Gwen and MIL in my hopes and prayers.

Rams

[Jess from VA]

Sorry for your troubles Scott.

Hope things go well for everyone.

[Bret SD]

Best to you and your loved ones Scott

[Valkorado]

Prayers out from Western Colorado for the best possible outcome for both.  Stay strong.

[cookiedough]

MIL - asst. living facilities are not covered thru insurance unless having outside insurance that help offset the monthly fee.  My moms asst living is 3800 mth and most are pushing that 5K range per month, not cheap at all.    They do make cheaper assisted living homes  (like a hotel) if she can function mostly while they  cook and clean and do all the normal stuff though but knowing my mom's condition, we choose places that can do end of life care like feeding, laundry, meals, bathing, bathroom,  etc.    I did not want to take her out of the place we visited 1st knowing they could not care for her needs a few years later like she is in now and then move her again, although at this time she does not know nor care where she is at.  I did 2 years ago move her from the one asst. living home to another thinking my mom would be upset or get confused, but at her mindset with altzheimers it was a non issue she just does what someone tells her to go or do without questioning anyone.

As far as wife, lets hope and pray all the cancer gets taken care of and gone forever.   My wife had a pretty big scare around age 26 when we first met and got married  They found a growth inside her uterus area and had to have it removed leaving a 4 inch scar in the far middle lower section of her tummy down pretty low.  I never will forget she came into my work and was crying immensely and I thought someone had just passed on close to her.   It turned out well got it all and been free ever since.

[scooperhsd]

MIL has THAT kind of long term care insurance - so we are safe financially. For the most part, except for her mental condition she could physically take care of herself -  but mentally - she has what I call "3-minute memory" - she can remember 20 years ago, but if she puts something down - 3 minutes later she won't know what she did with it. Operating a phone , cell phone or TV is totally beyond her comprehension. We can't even get her to regularly take what few prescriptions she has (mostly for her mental condition). We are hoping to move her once and done. Driving is something the state has revoked her priviledge on  - and I'm not too sure she could pass the written exam to get it back. Selling her car is something we will have to do eventually.

Gwen - we won't know until after her appointment / surgery. Here's hoping for the best.

[The emperor has no clothes]

MIL has THAT kind of long term care insurance - so we are safe financially. For the most part, except for her mental condition she could physically take care of herself -  but mentally - she has what I call "3-minute memory" - she can remember 20 years ago, but if she puts something down - 3 minutes later she won't know what she did with it. Operating a phone , cell phone or TV is totally beyond her comprehension. We can't even get her to regularly take what few prescriptions she has (mostly for her mental condition). We are hoping to move her once and done. Driving is something the state has revoked her priviledge on  - and I'm not too sure she could pass the written exam to get it back. Selling her car is something we will have to do eventually.

Gwen - we won't know until after her appointment / surgery. Here's hoping for the best.

I’m hoping for the best also. Did something happen for the State to take her license ? I fear we will be there soon with my MIL.

[Jersey mike]

MIL has THAT kind of long term care insurance - so we are safe financially. For the most part, except for her mental condition she could physically take care of herself -  but mentally - she has what I call "3-minute memory" - she can remember 20 years ago, but if she puts something down - 3 minutes later she won't know what she did with it. Operating a phone , cell phone or TV is totally beyond her comprehension. We can't even get her to regularly take what few prescriptions she has (mostly for her mental condition). We are hoping to move her once and done. Driving is something the state has revoked her priviledge on  - and I'm not too sure she could pass the written exam to get it back. Selling her car is something we will have to do eventually.

Gwen - we won't know until after her appointment / surgery. Here's hoping for the best.

I’m hoping for the best also. Did something happen for the State to take her license ? I fear we will be there soon with my MIL.

M/H…

Hope you don’t mind a little experience here.

Barbara’s father developed slowly, we missed certain signs early on.

2 of the biggest factors of his driving were;

1) one day there was a large yellow scrape down the right side of his pickup. He claimed no idea how it happened.

2) He was driving Barbara one day. They stopped at a red light. After waiting a few seconds he proceeded to move as if driving through the light before green. Barbara stopped him. He insisted it was legal to make a left on red.

And a 3rd…the check out girl at the supermarket told Barbara that he would come in multiple times a day (some days) and buy ice cream sandwiches just a little while after having been there already.

Take the cars ASAP.

[scooperhsd]

It was more like - I put a GPS tracker in her car. A couple different times I saw her attempt to go to her credit union (a place she has been going for 20+ years) and not make it, then took "the long way home " - driving in circles. The clincher was when I was making a police report, and I was talking with the officer about her afterwards - he said do it for everybody's safety. The GPS tracker was to prevent her from being the next "Silver Alert". I had the Letter of Concern into the DMV that week. After exams by eye doctor (still OK) and her geriatric doctor (dementia diagnoses), the state revoked, saying she would need to pass a full drivers license exam (written and driving). The fact that she has had multiple duplicate DL's and bank cards since we got here didn't help. I'm not sure if we can find a DL for her right now.

My sister ( a State of Kansas Driver's License Examiner) went through this with our mom.

[cookiedough]

at least I never had to worry about my mom loosing her driver's license since she never had one in her life ever.  Biggest few issues I had was my neighbor noticed her walking outside say midnight on the sidewalk then back home for some reason in the BITTER cold wintertime as well.  Plus,  she never answered the phone I think she was scared of it or forgot how it works or what it was so that made it hard 15 miles away to find out if she was o.k.

Pays to have good neighbors who kept me informed of her for the most part luckily nothing bad happened too much living alone a few years probably too long.  Meals on wheels was delivered 3x's week and I noticed her loosing like 40lbs. and found about 30 meals on wheels frozen in the freezer NOT eaten either.  However, I brought over every few weeks about 15 bananas and somehow all were gone in ONE WEEK often since she am sure forgot she just had a banana so she ate another and another same day. 

It did not take too long for my mom once in assisted living to forget our names or anyone else's names for that matter nor have any memories of recent or 30-40 year old events in her life.   

[scooperhsd]

Status Update - Wife's oncolgy appointment got moved up on account of someone canceling. SO we, saw her yesterday. This morning for CAT scan.

Edit -
And now - results from the CT scan -
In a short phrase - not what we wanted to hear.
Mass in wall of uterus.
Lymph Nodes enlarged => likely means cancer has spread and will probably need treatment after surgery.

Good ( ? ) news - surgery plan (laproscopic) is still on. No date, should hear from scheduler tomorrow - monday.

[scooperhsd]

Date for surgery - Oct 4. Even though both of us ARE vaccinated, they want a Covid test the saturday before. I hope it isn't a PCR test - as inaccurate as they are (both true and false).

[The emperor has no clothes]

I’m sorry for the not so good news. Hang in there. These doctors today are getting pretty good at this stuff.

[Rams]

Good ( ? ) news - surgery plan (laproscopic) is still on. No date, should hear from scheduler tomorrow - monday.

I prefer to quote the good news.   She will be in my thoughts and prayers.   

Rams 

[scooperhsd]

I feel just totally drained, deep down tired.  I don't know what from.  I'm getting 5-7 hours of sleep most nights, eat reasonably well. I'm just down deep TIRED.

[John Schmidt]

I feel just totally drained, deep down tired.  I don't know what from.  I'm getting 5-7 hours of sleep most nights, eat reasonably well. I'm just down deep TIRED.

Stress! Both physical and mental/emotional.

[Jess from VA]

What works for me Scott, is getting out and walking about 50-60 minutes.  And at a good pace; no speed walking, but not an amble either.  And early (cooler) is better.

I keep trying to do it religiously (3-4 days a week), but am a backsliding sinner.  I went hard yesterday, and how have a sore ankle, which will pass.

There's always plenty of house and yard work, but none of that really gives a decent aerobic exercise (except maybe mowing the lawn, which doesn't need it 3-4 days a week LOL).

It's not just good for the body, it's good for the mind/attitude too.  I seem to need both.

[scooperhsd]

You guys are probably correct. I've been meaning to start walking again - just got back from a 30 minute / 1.5 mile walk.

Edit - God knows I've got enough stress in my life to spread around right now....
Music playing and listening helps me quite a bit as well. Piano Lessons, and playing bass in the community orchestra.

[f6gal]

Date for surgery - Oct 4. Even though both of us ARE vaccinated, they want a Covid test the saturday before. I hope it isn't a PCR test - as inaccurate as they are (both true and false).

The PCR test is not as inaccurate as you've heard.  Our staff gets them routinely, never had a false positive.  Also, they will probably let you get the saliva test; it's not as traumatic as the swab.

[Bret SD]

What works for me Scott, is getting out and walking about 50-60 minutes.  And at a good pace; no speed walking, but not an amble either.  And early (cooler) is better.

I keep trying to do it religiously (3-4 days a week), but am a backsliding sinner.  I went hard yesterday, and how have a sore ankle, which will pass.

There's always plenty of house and yard work, but none of that really gives a decent aerobic exercise (except maybe mowing the lawn, which doesn't need it 3-4 days a week LOL).

It's not just good for the body, it's good for the mind/attitude too.  I seem to need both.

Excellent Jess!
Personally I think walking is the best overall exercise we can do at any age for both physical and mental health. Between walking and running I'm getting in well over 100 miles a month, 2 1/2 miles in the am and 1 1/4 miles every evening. The dog loves it too

[Jess from VA]

2 1/2 miles in the am and 1 1/4 miles every evening.

OK, now I need a nap after just reading that.   

No walk today, but 3.5 hours of blowing (roof, gutters, walks and yard) and raking, bending, stooping and filling cans for trash pickup, wiping off the cars and a little watering.

Still 90s here, please bring Fall. (but hold the leaves)

[scooperhsd]

This morning is surgery day.

[carolinarider09]

 

[f6john]

This morning is surgery day.

I’ll say a prayer for you, your wife, and the surgeons. Sometimes the unknown is more stressful than the actual surgery. I always just lay it at the Masters feet. He has never let me down.

[scooperhsd]

Update -

About 1330 CDT, I got to talk to her surgeon/ doctor. Surgery was abit more complicated, due to extra large uterus - had to be put into a bag and come out via an additional opening. Also needed to work close around the tubes that pass urine, but - no complications. Visual confirmation that tumor had penetrated wall. I will be back at 1730 , about an hour before she should be transfered to her room for the night. Followup appt Nov 9, where additional treatments will be considered.

My overall summation - things went about as expected. I can come down off the cliff for now.

[carolinarider09]

Update -

About 1330 CDT, I got to talk to her surgeon/ doctor. Surgery was abit more complicated, due to extra large uterus - had to be put into a bag and come out via an additional opening. Also needed to work close around the tubes that pass urine, but - no complications. Visual confirmation that tumor had penetrated wall. I will be back at 1730 , about an hour before she should be transfered to her room for the night. Followup appt Nov 9, where additional treatments will be considered.

My overall summation - things went about as expected. I can come down off the cliff for now.

Good News! 
 

[Valkorado]

   Glad to hear things went well.  Prayers out for your wife's full recovery.

[scooperhsd]

Home !

Now to get her moving so she can start doing normal life 15 pound weight limit for 4-6 weeks.

[carolinarider09]

 

[scooperhsd]

We just received call from surgeon.

Stage 4 on Gwen's cancer. We will be receiving referals to Drs who use chemo and radiation treatments.

On the flip side - currently she is feeling better right now than she has felt since January.

Booster shot for Pfizer approved, she will be getting this afternoon with any luck.

[f6john]

Words just don’t come to me now but know that Gwen will be in our prayers along with you and your family. Glad she is feeling better, 9-10 months is a long time to be in pain.

[Jess from VA]

I'm pulling for you guys Scott.  And glad she is feeling better. 

[scooperhsd]

Nov 16 - latest update.

Last week, when Gwen was getting her port "installed" (this is a device so they don't have to use regular IV's for various things, both input and testing output), the guide wire they used touched her heart and sent her into AFIB, which she recovered from on her own. FIrst incident of any kind on her heart. Our Primary care was notified, and when she went in last thursday  (for other things as well), she wanted to send her to cardiology just to make sure nothing wrong is going on . As a result of THAT appointment today, she is on a 30 day monitoring. Our other reasons for seeing pri care - the steroids they use in CHemo (to minimize nausea) send blood glucose skyrocketing - we are both Type 2 Diabetics. So we inquired about fast acting insulin to keep this under control along with her regular meds. And she has a sample of a Freestyle Libre 2  - hopefully with the insulin script, insurance will OK this - it is VERY educational on how what you eat impacts your blood sugar.

Speaking of treatments - tomorrow is day 1 of light chemo / radiation. 30 days of external radiation, 5 days / week, then 3 days of internal spot radiation treatment  - "brachy" is what I think they called it. January sometime will be the start of full on chemo (where the insulin might be needed).

The diet they want her to follow on radiation (and maybe chemo as well) is about 180 degrees opposite of what we are used to for  diabetics - low fiber, easy to eat, etc. We will see how this is going to impact her appetite.

Thanksgiving is going to be interesting - we will probably  be having Thanksgiving in KC with friends that we have bee seeing weekly since the start of Covid, plus maybe some others. I'm deep frying a turkey, and we are making a cherry pies  / some sides. For my family, saturday we are going to Topeka to my youngest brother's and maybe some  / all of his kids , and my sister / her finace is coming up from Hutchinson with a Traeger smoked turkey ( maybe some of our turkey leftovers as well). Again, we are supplying a cherry pie. Everybody at all these events is Covid vaccinated . We didn't want to host because we don't know how she will be feeling for doing cooking.

So, our initial blizzard of Dr. appointments is over, and she is moving into the treatment phase.

[Oss]

god bless and will be praying for your wife.

She sounds like a real fighter and that is needed when dealing with what she has to fight

Know that you will be there for her in her corner all the way

[scooperhsd]

"Behind every cancer patient - is the nag" - and that is ME  right now - keeping the Doctors honest, voicing our concerns, etc.

While we were waiting for her to go in, a couple a bit older than us came in for his treatment. The gentleman was the patient, and the radiation treatment had made his tongue and neck "burned",  - too painful for him to eat, or even drink the things like Boost, Ensure, etc. The wife said the cancer won't get him, but malnutrition might. I wished them the best of luck. It made me feel lucky that we were not in that place yet.

[scooperhsd]

Latest updates (Dec 5)

Tomorrow, Gwen goes for her 2nd "Radiation enhancing" chemo treatment. Boy - did we learn things from the first !!
The Primary anti-naseau drug is a steroid that  - "affects blood glucose" - that is a serious understatement ! Our pri care Nurse practitioner has been great - Gwen now has an insulin prescription, and is now wearing a Freestyle Libre 2 (a CGM - Continous Glucose Monitor). That first chemo drove her level to 380 - something we have NEVER seen in ourselves. It certainly increased the urgency for getting these. She is just over 1/3 through the radiation treatments, and so far, side effects are minimal. Tomorrow is the 2nd Chemo, and now we are ready. Talking with the chemo Dr Friday afternoon, we will be reducing the amount of the anti n drug to try to minimize effects. I get the feeling that in some way, we are on an unfamiliar path for the Dr - dealing with a Type 2 diabetic on chemo.

Word of advice for any other diabetics who will be taking chemo - try to do what we have done. The last thing I want to deal with is her in a diabetic coma for either too high or too low blood sugar levels. Too low we could deal with by using glucose tablets / cookies, but we had no real way to deal with high without insulin. I hope we don't have to use it, but we have it now and are as prepared as we can be.

MIL - dealing with her is becoming a real problem. We will be trying to to step up looking for a long term care for her and taking care of other details related - it's just too much dealing with both of these issues at the same time. Sometimes I just want to breakdown and cry.

[f6john]

When you reach the end of your rope, tie a knot in it and hold on! Wish I had better advise but know I’ll keep you in our prayers. Hang on brother.

[scooperhsd]

December 23 -

Latest on Gwen -
Last week (Dec 13-17) was a bad week. She couldn't keep very much if anything down (Dec 13 was another light chemo day). Friday night and into the weekend, her appetite gradually came back and she is now back to eating normally. She gets Christmas Eve and New Year's eve off from radiation. Full on chemo (the kind that you lose your hair) will be starting Jan 17 (assuming no radiation appointments get postponed for bad weather). Pepcid seems to help ( I take 20 mg every night for MY stomach acid problems , so she is using mine). Family and friends have been supporting us with being there and sending care packages with things to help her cope with it. They mean alot. Ginger chews also seem to help with her indigestion issues.

[scooperhsd]

Jan 4 - 
Good News - Gwen is now finished with Radiation ! (YEA !!!!). Her Radiation Dr determined that the 3 Brachy treatments wouldn't really add much, so now she is finished . Should have been last night, but apparently the hospital was having network problems, and they got hopelessly behind, and eventually just rescheduled for tonight. 13 days of rest / recuperation, and then she starts chemo (full bore - hair falling out type). 4 treatments, 3 weeks between each other.

Now - I just need to figure out how to get MIL to the DMV for a state ID card so we ca start making progress on that front (sigh).