In order to keep everyone up to date without having to respond to a whole slew of emails that neither Bill or I have the energy to do, we're now updating the website on a weekly basis.  If there is no update in a given week, don't worry, there's just nothing new to report.  We appreciate everyone's emails, thoughts and prayers. 

 

Animal bucket list pictures are in the archives, starting 7/2013. One archive back ending 6/2013 are puppy pages, including Kaylie, my Yorkie.

 

 

Funeral Arrangements:

 

Visitation

• Tuesday, November 14, 2017

• 10:00 am - 11:00 am

• Wells Memorial Funeral Home
  1903 West Reynolds Street
  Plant City, FL 33563
  (813) 752-1111

Funeral Service

• Tuesday, November 14, 2017

• 11:00 am - 12:00 pm

• Wells Memorial Funeral Home
  1903 West Reynolds Street
  Plant City, FL 33563
  (813) 752-1111

Committal Service

• Tuesday, November 14, 2017

• 1:00 pm - 1:30 pm

• Sunset Memory Gardens

• 11005 N US Hwy 301

• Thonotosassa, FL 33592

 

November 7, 2017

 

Terri's story has touched a lot of people.  Obviously, some are family and friends.  Some are close and treasured friends that are like family, and some are just complete strangers that happened across this web page in passing or by word of mouth.  As many of you know, neither Terri nor I were big Facebook users.  This was our primary medium for providing updates to a lot of people without repeating the same thing over and over.

 

Terri's battle with cancer has come to an end.  She passed away early this morning.  I am comforted by the knowledge that she's no longer suffering.  She'll forever be with me and I know that she left everyone she touched with long lasting memories.

 

If you're getting this news here, rather than a call or email, please understand that this is not meant as a slight or any kind of preference. Terri and I appreciated everyone's support, good thoughts and prayers.  Thank you all!

 

October 27, 2017

 

Terri saw the doctor on Tuesday.  Our biggest questions were whether anything could be done about her voice and what are the next steps in oxygen and pain meds.  He couldn't really pin the voice on anything specific, but he did prescribe a course of steroids to see if that would help.  If there's inflammation causing it, then the steroids may help.  Today is day 2 on the steroids and no real change.

 

We asked about next steps on the O2 and pain meds so that we'd be prepared to ask for the right things when we get there.  We moved Terri to a portable O2 concentrator, but it only goes to 3 Liters.  There are still some times where she gets short of breath at that setting.  We still have the larger one, which does go higher, and he said there are other options for higher O2 needs.  Her pain is still well controlled with the dosage she's been on for a long time, but again, we wanted to be prepared if/when she's at the maximum dosage and still hurting.  Thankfully, still not there.

 

That's it for this week.

 

October 20, 2017

 

Things are about the same around here.  Terri has just about completely lost her voice.  She barely can speak above a whisper.  She can't get enough air in to project.  She's down to mostly soft foods or shakes and she's down to taking 1 pill at a time to get them down.  She does better with ice chips than drinks.  Thank goodness for our slushy machine!  Her pain is still well managed, but she does need help more often than not.  So, I've started my FMLA leave of absence so that I can care for her without unneeded distractions.  In the meantime, Terri sends this family memory about her father and his hobby:

 

Some family members asked for some stories about family members. Here is one about my dad.

MY DAD AND HAM RADIOS

OK, if you don’t know what a HAM Radio (aka Amateur Radio) is (short wave radio) check it out online (WIKIPEDIA) and do a search for photos on Google. It was my father’s hobby. It was like men texting in olden days! Before there were cell phones.  It’s been around since the pyramids were built!  OK, not really, but it has been around since the late 19th century.

This was NOT your average CB radio. You needed an FCC License for HAM Radio operators.
Usually it works as a hobby, meeting people from the ends of the earth and learning customs. Friends chatting to friends from far and wide.  From Perth Amboy, NJ, up and down the east coast, coast to coast, Mexico, Argentina, Cuba, Puerto Rico, Europe, Russia/China/Japan-which were in and out of wartime thru the years. Discussing politics, religion, languages-because you can’t learn about a country without discussing their backgrounds. Everyone was respectful-at least by the end of the call!
The most important thing it was used for was emergency efforts.

 

My dad used it get headline news for hurricane, earthquakes, fires.  There was a lot of work to it. Say sick feeble grandma and her 30+ family members are getting hit by a hurricane in Mexico - they really don’t know who’s hurt, or is the town still standing. Because my dad didn’t speak Spanish he would contact one of his HAM buddies who did speak Spanish locally, maybe Woodbridge or Perth Amboy, NJ. These 3 would find where they were on a map in Mexico. They had books of HAM Radio operators split up like telephone directories, but without those wasted ads, Northeastern United States, Mexico and they would send a message to the closest HAM in Mexico. By now there might be 20 people talking by HAM and phone. Our basement wasn’t that huge but these HAM radios looked like something from a Frankenstein movie with Jacob’s ladders and lights.

 

 

Now, 35-40 people were involved and in 12-24 hrs someone would be talking to granny and her family knowing that except for a few bumps and scrapes, they were fed by the Salvation Army a few hours before, but they were already planning the rebuild.

 

It sounded like a lot of calls, but when phone lines are down, it helps.

We both appreciate everyone's positive thoughts, encouragement, prayers and support!!  From the bottom of our hearts, THANK YOU ONE AND ALL!

 

October 11, 2017

 

Finally, a week with news. If this is the news you want, I’d rather skip any news.
 

Today, Kaylie is trying to get me to play with her.  She's started to line up toys next to the bed...

 

 

You pick the toy when you're ready Mom!

I fell on my butt the other night. I was moving from bed to wheelchair (electric).  I was trying to move a towel, the towel got wrapped around joystick, wheelchair was on, it moved backwards-I didn’t.  I was unbalanced (let the unbalanced remark alone) and I fell. I luckily landed on my ass. If I landed on my stump I’d be in really bad shape-but my butt did what it’s there for and cushioned my fall.

I hit back of my head on the wooden bed-did not blackout! I also hit-follow along here now, from top to bottom-back of shoulder, scraped and bruised my right abdomen, my butt, my stump and right hip. That took the worst. Although I landed on my butt, my stump has been burning for a few days. I lay with an ice pack on it. It’s a few days later and I’m feeling better. Lots of activity but nothing but a see and wait for other symptoms in case anything else developed. Oh, increased pain meds, but back to somewhat normal pain and pain pills were reduced to regular pain med doses.

Oh, and Kaylie got a hold of Bill’s reading glasses. Ate the wrapping around the wiring and chewed enough on the lens to chip them up in spots.

Kaylie and Bill were terribly upset but they are both ok now too.

Alright, it’s coming up on 1 am. Let’s see if I can sleep now.
Hugs and kisses
Love Terri, Bill and Kaylie
 

 

October 1, 2017

 

Hi everyone!  Sorry it has been a while since the last update, but there really hasn't been much change.  Terri is sleeping a lot.  While she does have pain, it is mostly controlled.  To everyone that has emailed her, but hasn't gotten a response, she's checking her email every few days, but her shoulders, hands and fingers hurt from holding her tablet to long.  That makes it difficult to type long, sometimes even short emails.  She tries to respond the best she can these days.

 

I'll try to update the site as frequently as I can, but just know that if it hasn't been updated, there's nothing new to report.

 

Terri and I both appreciate everyone's thoughts, prayers and positive energy very much!

 

September 18, 2017

 

To everyone that wished Terri a Happy Birthday, she says Thank You!  The day was uneventful, she mostly slept, still recovering from the stress of the power outage after Irma. 

 

September 14, 2017 @ 3:00 pm

 

For those of you that were not in the notifications that we sent out, we lost power at 8pm on Sunday night.  Statewide, 6.3 million homes were without power across the various power companies.  Our entire neighborhood was without power until just before 3pm today.  We don't have a generator, but Bill's definitely planning on getting one.  Fortunately, we suffered no damage except for the power outage and the food spoiling in the fridge and 2 freezers.  This was a very long week. 

 

A special thanks to Lynn for checking on us and running to the store and to Ellen and Ricardo for literally throwing us a life line.  They returned home on Wednesday and fired up their generator.  They promptly asked if we needed an extension cord so that we could plug in the fridge.  What we really needed was the oxygen concentrator, so we gladly accepted.  Hospice was making daily O₂ deliveries, but there was always the nagging fear of running out.  Especially when we found 1 bad tank.  They made an urgent delivery.

 

This was our first direct hit since moving to Florida in 2007.  We definitely got lucky.  Things could have been much worse. 

 

September 10, 2017 @ 4:00 pm

 

Not much change in the last 4 hours.  Seeing rain bands a little more frequently and the breeze is kicking up a little.  We'll probably see more change in the next 4 hours.

 

September 10, 2017 @ 12:00 pm

 

As of the 12:00 pm update, the storm track continues to move toward Tampa.  At this point, Irma just left the Keys.

 

Overnight it was extremely quiet. Dogs, birds, animals, cars, people are all really quiet. Mostly drizzle and little to now wind until about 11:30 am when we got our first heavy rain. If the maps can pick a day, time, wind strength and stick with it we’d be doing ok. Now they predict something should start around 2 pm, with the really heavy rain and wind overnight into tomorrow morning.

 

Most of our neighbors, from what I can tell, are staying home. One family did decide to leave town yesterday morning.
 

September 9, 2017

 

As of the 1:00 pm update, the storm track continues to move toward Tampa.  We're expecting to start seeing the effects Sunday morning, with the worst of it being overnight Sunday into Monday morning.  Our plans remain the same.  We're not in a flood or evacuation zone, so we should be OK from that perspective.  The power is always a concern, but we can go to our friend's house since she has a generator.

 

September 8, 2017

 

It’s Friday at 8:00 pm. 

 

Irma is Southeast of Miami.  The whole state of Florida is under a Hurricane Watch.  We got our first taste of things to come as we had a heavy thunder storm at about 2:30 pm.  It lasted about 30 to 40 minutes, then the sun was out again.  We plan on sleeping/ eating/ reading as long as we have light and power. 

 

We think we’re good as long as we have power.  We can go to a special needs shelter (has oxygen available), a regular shelter or our neighbor that has a generator etc.  The dog shelters are full and she’s not being left alone.

 

We’re high and dry!  Feeling OK!  Check back for updates.

 

Love

Bill, Terri and Kaylie

 

The Friday, 8 PM storm track from www.myfoxhurricane.com.

 

September 6, 2017

We have plenty of water, meds are filled. Checking on what we can do to help others. Also checking on any options if our power goes out. That means no oxygen generator. Bill talked to the Hospice nurse and they do have a special needs shelter if it becomes necessary.  She's also going to order a couple of the large oxygen tanks instead of the smaller portable ones. I used one a couple of weeks ago and it only lasted about 3 hours.

We were nervous until her last turn and it’s better now.  With each update, it seems that the models show it going more to the East, which is better for us.  Still a strong storm, but the Western side is usually a little weaker.

We never bought a generator, having been lulled into a false sense of security...  Bill will be buying one soon though.

For all our friends her in FL and along whatever path Irma takes, please keep safe where you are. I doubt we need to worry about flooding by us, but still for others in FL, flooding is the worst enemy.

I fought cancer too long for a hurricane to wipe me out now!

Hugs and kisses.

FYI - On oxygen pretty much all the time. Wheezing and coughing are pretty consistent. Talking on phone is impossible now, but I’m reading all emails.. Eventually...  J

ttyl

August 27, 2017

To everyone that sends me emails, I’m sorry that I'm really slow in responding but I’m having a terrible time writing back to everyone because of pain and fatigue. When I do respond, I’ll be keeping my responses short. I love to read and respond about everyone and everything - old neighborhood, friends, family, pets, plans, what you’re doing, where you're going.  My issue is I have arthritis between my neck, shoulders, elbows to the tips of my fingers. To make matters much worse-and this is the killer, I have extensive muscle wasting. Talk about crêpe skin! I have no strength to hold my tablet up. It’s usually propped with pillows to get support to hold it.

I've also been  using oxygen 24/7 because I cough too much. Talking on the phone is out of question. It’s either I choose between breathing or talking, but I can’t manage both.

I’d still love to hear from you, but I have to keep the messages short.

Love and thanks for understanding!
Terri
 

August 8, 2017

A few weeks back we went to bed one night and when we woke up the next day, we had Tropical Storm Emily over our heads. It was all of Hillsborough, Manatee, Clearwater and Pinellas counties were all effected. Lots of strong winds, some thunder, and plenty of water ran thru us, then onto Orlando. They were monitoring if she would hit the Atlantic, strengthen again and move up the east coast. Maybe hitting the Carolinas or mid-Atlantic states.

This storm brought a cough, and strong post nasal drip to me. For about 2 weeks I couldn’t talk without using oxygen and laying down on my side. That kept everything quiet for the most part. It got better for a bit, but now it’s worse. I see my doctor this week. Go over my medication, check me out and see if there is any progression. A few weeks ago I had difficulty getting from bed to bath to chair without Bill’s help. Now I need the electric wheelchair, on loan from Lynn and Moy while Mama Dora isn’t using it at present. I don’t sleep with oxygen much of the time at night, but wear it most of the day.

We’re looking for a hospital bed. We just have to call the day we want it to be delivered. A full size bed has to broken down and moved to garage! A chair might be moved and the corner fireplace in the bedroom will give us more room. We hope everything fits perfectly in our bedroom so Bill is in the same room to monitor me all night. The guest bedroom will work if that’s not an option. We empty the spot, call them and it comes before bedtime.

So I think things are moving along. I’m in the bathtub, but the water isn’t in the tub or circling the drain… yet! I’m still making lists. Lynn is in Hawaii for a week. Long story. I hope she’s home. I’d also like to see the eclipse on 8/22 is it? Bill has to find those safety glasses. As soon as we know more, we’ll pass it along.

Bill’s hanging in. He's applied for intermittent FMLA, so we'll see how that goes.

Kaylie is still trying to feel ok. Her vet recommended its not her fault making in. she knows something is wrong and she can’t fix it give her some time after I pass, then take it slow and steady. Maybe bring her trainer when he can show Bill some tricks and help her with depression

That’s it for now! Stay cool! It’s brutal down here.

 

July 23, 2017

 

Allergies are acting up so I’m getting a lot of congestion, runny eyes etc. I’ve also been wheezing more and have been needing more oxygen. Otherwise everything is the same. This week I slept thru Monday, Tuesday, Thursday and Saturday.

 

Hot with thunderstorms starting around noon most days. Add to that horny gators and sinkholes and then you have the joys of summer in Florida!

 

In Land o’ Lakes (about 30-45 minutes away) Florida had another sinkhole-this time swallowing 2 houses-but no one was hurt. We tend to have more down here because of the sandy soil we have. It doesn’t pack well and when it rains it washes out sand below until it just webbed grass above looking like it’s solid. When the sand drops out, the grass sort of dimples until something hits it, then it just falls thru. When they look to see if the hole will spread, they push in thin steel poles-if it slides into the ground quickly, it’s unstable! Oh, the stuff you learn living in Florida.

 

Happy to report we haven’t seen any more gators in the area and we hope to never see one again. They captured a small black baby bear in downtown Tampa this week. The bear gave them a run around for a bit, but it was too damn hot and he laid down under some shady trees and they just sedated him and carried him off.

 

I think that covers me and nature in the area this week!

 

Stay cool and steer clear of nature in your neck of the woods! Thanks for checking in!

 

July 3, 2017

 

Things were going well until last Friday. I was reading a magazine before bed and I got a “kink” along the right side of my chest from my shoulder down to the bottom of my ribs, both front and in my back. Usually it lasts 2-3 minutes, maybe 15 minutes and then recedes. Instead of easing up it just rose for hours. My pain on Thursday evening and overnight was horrible. On a scale of 1-10 it was an 8. By morning it was 7 by Friday and 6 on Saturday. I just slept 24/7 just waiting for my next pain pill. I think I told you they added another ½ tablet of my regular med from 1 ½ tabs to 2 tabs. Did nothing. Became worse. Tried Tylenol, ice packs, heat packs etc. called hospice again. They added another, 2nd pain pill. Still pain, but not as bad. Before I had trouble breathing with it. Breathing and pain is better. Pain scale now is about 4-5 as long as I sit still-well, keeping my chest area still. I guess this is my new normal for a while-until the next pain session that I can’t fix myself that gets past the pain medications' control. At it’s worse on Thursday into Friday, it hurt to move anywhere. Bill needs to wheelchair me everywhere and help me in and out of bed. Couldn’t move my arm- anything that would cause movement in ribs. Coughing, breathing, moving is just terrible when it makes me short of breath. In the past it’s usually been a little pain, fix it, it feels better, go on. More trouble taking deep breaths. I might have reached the point of a downward roll. I’m not circling the drain, but I’m in the tub and the water is running!
 

I will be slowing down on my emails and postings or Bill will help me with it. With the extra meds it’s really hard for me to stay up and focus. Talking on the phone makes it hard to breathe. It’s more like a whisper and I need to speak louder, which hurts.

 

Hugs and kisses!

Have a Safe and Happy 4th!

 

 

We see fireworks outside our backdoor or front door! I’m more concerned about celebratory shooting since its popular down here! Keep your guns in your holsters cowboys!

Love and kisses!!!!
 

June 23, 2017

 

I came across this while surfing the net...

 

Click here - Amputees With An Awesome Sense of Humor or paste this in your browser:

http://www.ranker.com/list/funny-amputee-pictures/nathandavidson?var=2&utm_expid=16418821-310.smDnXTH_QT6V93qtvQFoXw.1

Although I love them all (sharks are getting old).  My fav is flamingo (of course) and dolphin!

 

June 20, 2017

 

Same old stuff! Nothing has really changed. The heat has made me a little congested - maybe a sinus infection. The wind has picked up too - not that I’m outside a lot. I got an antibiotic but just as I was going to start it, I started to feel better. I’m holding off for another day or two until I see my nurse again or I feel worse.

 

OK, so I’m running out of stuff to type. So I’m going to type about some of my fondest memories!

Boring…

My First Memory

I think it was my first memory because my dad recorded it on film. Not video! Film (amber Kodak stuff) that you threaded thru reels. There is no talking. Just movement - but at least it was in color!

 

My dad loved to garden and he started off with flowers. His tulips won a local award that year. They were a bright crayon yellow and red. I was in a pale yellow and white dress with my blonde hair in ringlets curls. My dad is filming me going up to the flowers and mom and dad are saying to smell them, etc. Don’t pull them! Just as I yanked 2-3 right out of the ground! Dad learned early that I have a strong will! My mom would tell that story to anyone who would listen!
 

So that’s it for now!

 

Hugs and kisses! Stay cool!

June 13, 2017

 

Nothing much new! I sleep a lot and eat when I can. We just ordered Carnation Instant Breakfast because I can no longer get Boost down. I eat a lot of yogurt. If I ever lose the taste for yogurt I’ll just be drinking water, but for right now, I’m good.

 

I don’t know if I mentioned it before, but about 9 months ago I was given Marinol. The marijuana pill without the good stuff in it. It’s used to increase appetite and to help with nausea. I was afraid to touch it. I get a lot of reactions/side effects to medications. The weirder the drug, the crazier the reaction. I finally reached a point when I was nauseous and wasn’t getting relief from the usual stuff. It was time to try the Marinol. A few hours later, my nausea resolved, but for the next 8-10 hours I had what we called brain zaps. It felt like an electrical pulse would make my brain tingle. I tried another pill the following day. I didn’t appreciate the side effects, so they were all thrown out. I was hoping it would improve my appetite and I’m used to side effects. So goes that idea!

 

Otherwise it’s hot and muggy in Florida. We also had an unwanted visitor in our neighborhood last week. We had a 6-7 Ft alligator roaming the community. A wanted poster was hung, but to my knowledge, he/she was not found, so we’re on the lookout. Not that I get outside these days, but I’d leave scooter tracks on his hide!

 

Well, stay cool and enjoy the summer!

 

May 24, 2017

 

Doing OK. Sleep 1 day, up the next. Much of my pain is controlled, except when it’s not, then the pain meds don’t work fast enough. Kaylie knows I need distraction, so she’ll flip her ball into my chest or head and I get to throw the ball until the pain subsides!

 

The good news is this past week as long as it’s an awake day, I’m not nauseous and seem to be eating more. Hopefully that makes up for the sleeping days when I don’t eat much. Doubtful. They weigh me about once a month and for the past 3 months I lost about 9 lbs each time. Good thing I have more where that came from. If someone told me someday I wouldn’t have the urge or desire to eat, I would have said they were crazy. Now I just can’t explain it. Garlic will drive me out of the house! Cakes, cookies I can still get down if my dry mouth allows. Plenty of water keeps me hydrated, which is hard getting down, but I’m able to think and talk clearer.
 

Hey, we’re getting some much needed rain in this tinderbox called Florida! Rain today and tomorrow too!

 

OK, I’m on an awake day, but I’m hurting some, so I’m going to lay down for a bit.

 

Hugs and Kisses

Terri

 

May 9, 2017

 

Tomorrow is a Special Day! Tomorrow is our wedding anniversary! It’s a big deal for us because it’s our 36^th! This is a special number in Judaism and our family has always used that number as a special celebration! It was one of my favorite traditions I loved when I joined Bill’s family. Everyone always got a check for $36.00 lol! I’m also thankful that Bill and I have gone along this long, bumpy road! Some days we thought we couldn’t go on. Births, deaths, accidents, illnesses - all make for a roller coaster life, but after the dust settles, it is a life worth living! Thank you for making my life beautiful and special! I Love You Bill - ∞

 

May 4, 2017

 

The five days of radiation seemed to be ok, other than make me sleep 24/7. Late last week I started with a thrush infection in my mouth and throat, which ruined any appetite I had. It took a while before I realized what it was, then asked for a prescription.

 

Then I developed the dreaded UTI. I started that antifungal on Tuesday. That one I’m concerned about because the bacteria that I usually get with a UTI is what my body is repelling against. I only have a few, if that, treatments before the med no longer works for me. There are other medications, like sulfa, but I’m deathly allergic! Isn’t that a kick in the ass? lol!

 

Now I remember more about radiation. A few days of treatment but symptoms hang around for weeks and it get’s worse before it’s better. It hits your digestive and other symptoms that aren’t even sick from cancer. My lymphedema also got ticked and under my arm it’s all black and blue and painful to touch. But, it’s improving!

 

Thanks for checking in with me!

Hugs and Kisses
 

May 1, 2017

 

Terri finished radiation last Monday, 4/24.  She's been sleeping a lot and still has the fevers.  Here she is on graduation day...

 

April 21, 2017

 

4 down and 1 to go… Terri’s had radiation treatments since Tuesday and she’s tolerating them.  She’s also been dealing with another round of fevers that started on Monday, so between the fevers and the radiation, I bring her home and she crawls into bed and sleeps through until morning, except for food and pills, and gets to do it all over again. Her last treatment in this series will be on Monday. 

On the plus side, she does think that it has eased her breathing some since she hasn’t has as much shortness of breath.

That’s it for now.


April 12, 2017

 

My stomach is much better. By past experience I should have 2 more days of fever before that resolves. I went yesterday for my CT simulation. They were very kind and worked very quickly because they knew I was uncomfortable. I felt a little sore when I left, but by bedtime I was hurting really bad. I upped my pain pill, which I’m allowed to do, but even then I had a terrible night. I’m feeling a little better.

Now when I get the actual treatment, I’ll only need to sit still for a minute. They put pillows on the table for me where I need them-like under my stump and under my other knee. Then they line me up to the markers on my chest, I hold still, they hit a button and I’m done. I think the extreme pain comes not from sitting still, but getting up and getting me down off the table. The techs are trained in how to help you. Where to put their arms to offer you support, etc. The best news is I didn’t have to lay there much. It’s usually 30-45 minutes because they have to tattoo spots on you so they can aim the radiation correctly. My old spots were great so they didn’t have to tattoo me. They did mark me by writing “old” on my chest (these wash off). I didn’t realize until I looked in the mirror when I got home. The tech’s name is Andrew and we were joking around a lot. I’m going to have to tease him that he could write the work “prior” near the mark and not hurt my feelings lol!

I guess that’s it. Oh, I go for my first radiation on Tuesday and finish up the following Tuesday. Unfortunately, all except one at 6 pm visits. They are very booked after a holiday. Don’t look for me much on emails for a few weeks. I’ll be reading them but once I’m in more pain, I plan on just spending my time in bed sleeping if off under the influence of meds lol. For several weeks later I’ll again/still have a lot of fatigue and my skin on my chest will be very tender (and look like raw meat) and have a sunburned experience.

Will keep you posted!
 

March 30, 2017

 

OK, so I went to Moffitt to the radiation doctor to see when we can move forward with radiation for palliative care (for my comfort from pain, not to cure anything).  In the past he explained it would be two weeks of radiation on the side that’s most severe/painful. We discussed that since I saw him last, I’ve now developed pain. He saw on my last CT that both sides are equally the same, so he’d like to do five days on one side, then after I heal, he would like to do the other side for 5 days, which sounds much better to me. It’s shorter durations, even though it will take a longer time, my recovery from each should be faster. It’s tough to go 5 days in a row, 10 days is worse. Way back in 2010, it was 30 days in a row and you’re tired and every day is tougher and tougher. You can’t cancel or skip a day. If you cancel in the morning, they call you a few hours later and get you in there later that day!

 

So first I have to get a CT scan and I get tattooed on the site the radiation beam has to go. They call that simulation.  I’m waiting for someone to call to set up this appointment. They’ll call next week sometime. Then they will schedule my week of radiation. I’m hoping to time it between my fever weeks. I think I’ve got it narrowed down to every 31 days. At least the last 2 times I counted they were 31 days apart.

 

I’ll keep everyone updated once I know when my tattoo and CT scans are.
 

March 14, 2017

 

Sorry ​ I haven’t responded to anyone’s emails since my temp is up again. ​ It started late Wed night. ​ I took it a little while ago and it was 98.6 for the first time since. ​ I just hope it is done now and it’s not back by bedtime when the Tylenol wears off. ​ This was-after all this time- that we have started monitoring how often the fever start/lasts. ​ It seems to happen every 30 to 40 days and lasts a good week.

 

Francine was here until Sunday morning. ​ She was supposed to stay until Tuesday, but the weather up north was scaring her. ​We offered for her to stay longer, but she has a cat to get back to and didn’t bring enough meds to stay any longer. ​We had a nice visit though. ​ I did sleep a lot, but Fran enjoyed herself by the pool. ​ One problem was we went to turn on the spa-but the heater died. ​ The pool water was 72-a little cool to swim in.

 

Just be patient until I get thru my fever and I’ll catch up on my emails!
 

 

February 27, 2017

 

Karen made this lovely quilt for Bill from old t-shirts of mine! Most are t-shirts I got from The Green Boutique, a little gift and jewelry shop in Valrico, FL. I've make 250-300 pink earrings the past several Octobers for their Pink Ribbon Walk and Fundraiser. They have shopping bags that they fill with little gifts, a t-shirt, candles maybe, and coupons and that’s where the earrings go. This year will be little angels instead of earrings!

 

 

I’m not sure how long it took Karen to make the quilt, but she did a terrific job on it! The colors are just fantastic and the blocks all blend so well. That’s one thing I never mastered - sewing!

 

As far as how I’m doing, I started using oxygen now. Not all the time, but whenever I get of breath. I've been using the nebulizer before bed which seems to help my sleeping.  As far as pain, it’s manageable so no complaints yet. I see my doctor every few weeks, but my nurse I see once a week unless I have a problem, then they’ll come right out.

 

This update was actually from back around Valentine’s Day, but Bill didn't get around to posting it until today - J.  It was very nice. Bill, me and Kaylie had a nice day. We don’t go out much, but we enjoyed ourselves just being home and chilling. We didn’t even eat anything special.

 

Hugs and Kisses!

 

 

February 8, 2017

 

I’ve been feeling from eh to miserable since Sunday. ​ Sunday my temp went over 103° and I’ve been pretty miserable. ​ My nurses have stopped by twice in three days. ​ There doesn’t seem to be any infection and it just seems to be my usual sarcoma temp, although it’s running a little higher than usual. ​ I also have been having more pain here and there. ​ Mostly in my rib cage and chest area, although my stump is also another country heard from and does not want to be forgotten. ​ They have been suggesting I increase my pain medication so I do up it by ½ tablet when I need to.

 

And last but not least, I’ve been battling nausea. ​ It’s not that bad, but it’s several times a day.

 

My temp has been hovering around 99°-102° and if things go normally it should stop completely in another week or so.
 

February 3, 2017

 

Not much new going on here since I started hospice. I love my nurse Michele. She takes plenty of time with Bill and me and understands us and our plans.

 

If you haven’t heard yet, Bill was in the hospital for a few days! It was pretty scary there. He had what we thought was a urinary tract infection. He saw a doctor, who gave him an antibiotic. Several days later Bill was still running a 103 temp! Lynn took him to the ER, where they decided to keep him for a few days. After all the tests came back, he was diagnosed with prostatitis and he needed IV antibiotics, which was also followed up by 21 days of oral antibiotics to finish at home!

 

Meanwhile, we are so grateful to Lynn for not only running back and forth and bringing Bill's clothes back and forth, checking up on me, taking Kaylie to her house so I could move around better and not have to worry about her care, stopping at the store for me, and picking up Bill and bringing him home when he was released! Thank you Lynn!

 

We had a visit from Carol at the beginning of the week, and a quick drive thru visit from Karen and Jim later this past week!! Thanks for stopping by!
 

 

January 20, 2017

 

I did see the radiologist yesterday. This was to discuss radiation to my bronchial tubes to open them up before they impede my breathing. The good news is he doesn't see the need to do it now. I will go back in March and see how much it progressed and decide then. I'll have to go once or twice for set up and for them to mold something to keep my chest still. Then I'll have to go every day M-F for two weeks. Side effects, trouble swallowing (will bother esophagus), more fatigue, red burning skin-like a really bad sunburn, but it comes from within. Not looking forward to it, but it's doable.

 

January 5, 2017

 

OK, so late week I went for a CT scan to see how the Keytruda is working. I saw the doctor yesterday and we found out that the Keytruda wasn’t working at all. In fact, the transparent or opaque areas that I had back on the last CT scan are now solid tumors. They offered more chemo, but all of the chemo choices offered come with severe side effects including more nausea and vomiting, neutropenia (low blood counts that require hospital admission) and sleeping thru all the fatigue. I turned it down. I’m tired. I’m even more tired with chemo. Dr visits, emergency visits in the middle of the night etc. I’m not really gaining anything. I might live a few more days or maybe a month, but I’ll be sleeping and/or in pain for those days. They do feel that the tumors are growing at a fast pace.

 

I will be seeing a radiation oncologist later this month to discuss undergoing a couple of radiation procedures to reduce the tumor size near my airways to make it easier for me to breath, later when the cancer progresses.

 

So what does this mean? I was told that I have another six months or so. I guess this time they are serious because I’m going on hospice care at home! It’s early, but they recommend it now so I can meet my hospice doctor, nurses etc. to become familiar with them and build a rapport with them. Right now, I’ll be seen once a week until I feel worse. I did not request a home health aide a few times a week (to help me shower and dress) because right now I’m pretty much self sufficient. I can request an aide when I need one. They delivered oxygen to the house in case I need it.  No need right now, but better to have it here than having to call an ambulance or go to the ER.

 

I guess that’s about it for now. I’ve come to terms with the fact that I’m dying a long time ago. I’m a little anxious about how things will progress, such as having difficulty breathing, coughing up blood, but nobody gets to pick how they die.

 

Should another treatment come along that I would like to participate in, they can take me off hospice so I can try that treatment.

 

I think that covers it. Bill is trying to deal with all of this. He’s been my knight in shining armor since our first date in March 1980 when Bill took me to see Star Trek: The Motion Picture, the original! I’m sorry he has to go thru this, but thankful that he’ll be by my side. I’ve had a wonderful life, wonderful family and terrific friends! I’ve got nothing to complain about!

 

At this time, Bill and I are still processing this and ask that you give us some time before reaching out.  Feel free to email either of us, but be aware that we may not respond right away.

 

Thank you to everyone for your well wishes, positive thoughts and prayers!