Day 14 and 100!

Dexter is stressed out because I am not home. He is obsessively chewing up his feet.

Pathetic, or what?

If I were home and going trick or treating...

Seriously fun.

The staff, me, and one caregiver dressed up. Then sang and danced to "Happy" for us.

Today is day 14 post transplant. This is where I am supposed to be feeling better. Radiation side effects last (or maybe he said show up) 2-3 weeks. It would hold be nice. Started loosing hair again. A visual set back. Oh well.

Hot flashes are back. Ugh. They were subdued for a bit.  I got the perfect fan in the mail. Thanks, MJ and B!

Other good news is my ANC count is coming up. I am at .1 and can get released any time after .5, just don't know when that will happen. It took so long to get to .1 and I want to be sure the days at clinic won't set me back. Hang in there, Dex, I'M COMING!

Mom is coming too. Yay!

 And flat "us" and the group will be home too.

Wow. Big day tomorrow.

Lack of Focus

In general, what I feel is an overall lack of focus. I no longer have a runny nose, and am eating better.

I needed plateletes at 0330 am, and my normal 4 am drug. Then a 6 am drug. So I slept until nature called and then I called for weigh in and got the ball rolling. 

I got up, showered and dressed.  This dress is usually not paired with black, but it works, I think. Thank you, Ed and Marie, for the dresses!  Thanks to Chris and Tamara for the jewelry!

I know I look tired. But my visitor, Darlene, didn't seem to care. She told me to take a cat nap and I did. Thanks for coming up.

These might be your donation!

Hair loss continues. Gross. Welcome to my world. This is why they change pillow cases and sheets daily.

Here was a cured patient on the floor. (In the middle) He brightened everyone's day.

We are in Positano today.

 

And we swam in the Mediterranean Sea.  (I was taking the photo, I'm sure. Two of my favorites: click, splash).

Tomorrow is the last day in Italy.

Happy Halloween (tomorrow)

Someone be sure my porch light is off before 4 pm so we don't get egged.

Who Pooped in the Kitchen?!

Have I told you how sensitive I am to smells? It's amazing, but not in a good way.  The tap water smells strongly of chlorine, food smells awful and that effects everything I eat and drink. I am like a hummingbird and only want sugary tea, fruit or green beans and carrots. But I am choking down half my meals. The staff is happy with that.

I took two walks and forced two bottles of water. Even bottled water tastes weird.

Are these your plateletes? I know they are not Helen's. She just donated today. Thank you!!!

Then we had a nice visit and she brought me cake.  Yummy! Thank you. 

Eyebrows. Now you see them, then you don't. But I hear when all this is over biotin will help them regrow quickly.

I still have a fever of 99.3, and an ANC of 0.0. Doc says Friday will be day 14 and mu numbers should be up by then.

Gray day. But a clear sunset.

All in all, it was a good day.

Last Methotrexate

I love the staff here. Did you know that? My nurse and tech got a case of my WahWahs today. They took it like seasoned champions. But overall I must be ok, since I had 2 little walks today.

As part of each regemen, they give us a day by day list of what is involved. We are on the last day of the piece of paper. My nurse is happy for me too!     😷

Methotrexate.  It's a powerful chemotherapy drug. It is needed to prevent GVHD (Graft Vs Host Disease [like an anti rejection drug for transplants].)

The staff here is fun. I can't wait til Friday, Halloween. I want kent to bring me my princess outfit and Marilyn wig since they are all dressing up!

This was taken by a dear friend on transplant day. I think this says it all. It was not only tiring for us, but for everyone notpictured.  I appreciate you, dear reader, for taking this journey with me.  I hate that I am putting you through this.  The stress and worry is acknowledged, and I hope you have a way of releasing it.

Today is ok. I am sniffly and sneezy. We did a nasal levage. We are waiting on the results.

Here is my wayof reducing stress: traveling Italy with friends,

Our alter egos are having so much fun.  The villa we rented has an amazing garden and the owners gave "us" unlimited access.

They have lemons, grapes, artichokes, tomatoes, and many many more fruits and vegetables that I don't know about. How great for the 2 vegavoires, Kay and Meg.

Sleep

I found it. All day long in between guests. 

Thank you, Joan, for coming for a visit. It just goes to show you are still a neighbor even if you move away. I love the chocolates, but you knew that!

Darlene was donating plateletes and came over. She was sad she only donated one bag. Last time she gave 2. Puh-leeeze, girlfriend! One is the normal amount. And Thank you!

Sorry there is nothing more to report. I think I am getting better, and sleep definately helps.

Here is a view of my day.

Here is a view of my alter ego's day.

Alter ego wins.

Insomnia

For whatever reason, I didn't sleep well last night. Maybe a change in meds or didn't do enough to wear me out, or I am caught up, or the fever staying at 99.6.  Luckily I have friends across the pond I can call. When life gives you lemons....

Pick them and use them! Lemon+caper+white wine+chicken pasta, or lemonade, limoncello, sorbet, etc.

So I put out a sign. It was ignored by many. So frustrating.

I got so many medicines hung today, I can't remember them all. I also got the magnesium dissolved in a saline solution, so no premeds needed. Everyone was dumbfounded that I had a reaction. Yay. I am "special." Let's see.... I had potassium, plateletes, and 2 units of blood. Could this be your donation? I heard that Maj. snuck in and donated 3 bags, my sister gave 2, and Mary gave one.  Darlene is coming tomorrow. Thank you so much. It means the world to me.

My numbers are about the same. I thought they were negative white blood cells, it wasn't. It was less than .1 per million. Now it is .1, but the ANC is still 0.0

So... I have to pull the "chemo brain" card. (I lost my blond card priviledges.)

Today Kent and his parents come for a visit before flying home. I was asking if their dog, Chip, was in the car. They said no.

I was also trying to get some photos downloaded on the iPad from a USB card Gene brought. Tech support (thanks, Aaron!) explained to me why it was not working.

So, I told them they can put the photos on the my computer when they get back to my house.

Trish said they were going straight to the airport.

I said "What about Chip?"

She said he is staying with us.

Doh!  I knew Chip was wintering with us. Just as he has done every November since they adopted him some 4 years ago.

Wow.

That's my Oopsie look.

Well, I hear my neighbor, DonDon is not getting out of the hospital. Maybe another week or two. But we did FaceTime and he looks great. Every day he is shuffling.

Have you ever heard of pumpkin twinkies? Me neither, until today. Bev sent me a whole bunch. So many I had to share with the night shift. Thank you, Bev!! They were delicious!!

I require sleep now. Good night to all.

The Safest Place To Be

If you are reading this and freaking out about me being in the hospital, I'm sorry. There is no need to be freaked. I am in good care and it is the safest place to be while I have no immune system.

The fever and chills are gone, I have no pain, and got a good night's sleep.

I even had a visitor, Mary. She was supposed to be my ride in, but since I was already here, she didn't need to come. She came to keep her appointment to donate plateletes. Thank you!

This is my view from room 465.

As I was doing my walking today, I happened across this.

I doubt this is our neighbor, Don, but wouldn't that be fun? I know he is still in another hospital, but maybe home Monday. That is the last I heard. Hurry home, DonDon!

Still doing better and better. Lots of test are being run, but they suspect some virus. I might not be in for the 7-10 days as first predicted. Dr. Solomon said he was not surprised to see me hospitalized. He also said I was doing better than most.  I think that's all good news.

Bad news is I got kicked out of the investigational study. I had really bad heartburn and nausea, so I was put on metronidazole. That made me ineligible. Dang it! I really wanted to help with the study.

Enjoy your weekend!

4 month mark

It has been 4 months since I first checked in to the hospital.  Let's celebrate the medical accomplishments:

I am in remission

My brother donated, and I received stem cells

All organs functioning normally

Last night was rough sleeping. Today I can't get comfortable in clinic, so no great nap here. I am feeling worn down.

I was wrong about my numbers. Today I am rock bottom at ANC 0.0 and a white blood cell count of <.1 (negative! I didn't even know that was possible!)

Today I needed 1500ml of fluids, whole blood, plateletes, and magnesium. What a long day. They hung  magnesium, plateletes, and blood separately to see if I react to one. These could be my sister's plateletes.  Literally!

So, I was feeling kind of pitiful, and swishing my salt water. The one minute timer sent me a gift.

Can you see the sand piled up in a heart shape?? Cool.

Our alter egos made dinner at the villa. Tomorrow they head for the Amalfi coast.  My favorite part!

And finally, after a harrowing ATL friday Rush hour commute, I spiked 101.5, so it's off to the hospital. As my Mom says: they will make it better.

OK Fine

I am ok fine today. Better than yesterday.

Annie drove me to clinic (without a wrong turn, since I wasn't navigating). Thanks, Annie!! I took a selfie, but am too dumb to get it from my new phone to the iPad. I desperately need tech support (Aaron) but can't concentrate on much right now. I will take you up on your offer soon, though. I hope.

Clinic was good. No reaction to the magnesium today. I got 2 Tylenol and a Benadryl push.  The Benadryl zonked me out, so I slept at clinic. Guess I needed that.

I am rock bottom with an absolute neutrophil count of .1, the same as yesterday. So now we go up.  Until my counts recover, I have to be very careful and watch for a fever of 100.5 or greater. That will land me in the hospital. So will a few other things like uncontrolled chills, rigor, etc.

I had enough energy at home to sit on my couch and catch up on mail. The cd #3 is from David, the honey from RuRu and BD whose momma keeps bees, and the 3 day bone marrow transplant card and sox from J&K.  What sweet and thoughtful gifts. Thank all y'all.

Kent and his parents are headed to open mic night with the neighbors. Then it's a 6 am drive again to clinic with Trish and Gene. I have been getting done about 1:30 pm so it is better than expected. Maybe I need to adjust the sign up sheet for drivers to reflect that.  Maybe.  Later.

Last bit of noteworthy news is nose hair. I am getting some back. It is happy news for me, but I will spare you the photo.

Goodnight!

Now What?

I kinda feel like I am falling apart. The last two days I had a reaction to magnesium. Today one of the side effects of radiation showed up. The salivary glands are swelling aka chipmunk cheeks.

Well, one cheek so far. It doesn't hurt, but I am not happy as you can see in the photo. Pretty pathetic. The doctor says there is nothing to do but suck on lemon candy. Thank you, Barb! It helps to have someone who has been through this as a caregiver and anticipates my need.

My mouth sores are starting to show up. Another radiation side effect. Doing lots of salt water swishing to ward them off. Wish it was ocean water, but this is sterile. They are like canker sores. I have a numbing agent if it gets very bad, but it makes me gag. Literally.

Another thing is I will be premedicating from now on. I will have Tylenol and Benadryl before getting blood or plateletes. I never needed that before.  Things are definately changing.

My numbers are down, as expected. I am rock bottom with no immune system. No visitors, no going out, make my own food. Seriously neutropenic. 

Remember, I can be admitted to the hospital any time. Sure don't want to, but if it's the safest measure, it must be done.

Morning pills.

Kent's parents, Trish and Gene, drove me to clinic. It was not easy. There was a wreck, then I made them take a wrong turn.  Rookie.

I came home from clinic and took a 4 hour nap. Guess it was needed. Sleep at night is interrupted, at best. Every 1.5 hours I am up. Yay.

Dinner was home made no delivered by Bev and Linda. Super awesome yummy ribs, chicken, corn on the cob, bread and Cesar salad. Gingerbread cookies for dessert. Mmmmmm.....

Lastly, our alter egos were at a chocolate festival.

All for now. Tomorrow will be a better day.

Better

Today is better. My numbers are still falling, but I feel better. My nurse said it is not a forgone conclusion that I will end up in the hospital during my low. The most common reasons for admission are fever, mouth sores, diarrhea, and nausea. If anything is going to get me, it's the fever. I know if I spike a fever again, it will be gone by the time I make the hour drive to check in. Little bit frustrating.

Today Melissa got to do a little shopping while I was getting infused. Then she brought me ice cream. Yum. Then sat. Boring.

Even though I feel better, I don't have the energy to do much. Talking is a task. Texting is a task. Surfing is a task. Writing, reading, watching to TV, listening to music all weigh heavy. So I try to nap and stare at the walls. I am good with that. And this, too, shall pass.

I told you there was some new fuzz on my head. The longer strands are the original hair that never left. Weird. So far I have not been completely bald.

I got a full bag of magnesium today, infused over 4 hours to prevent a reaction. I still had a reaction, and had to get Benadryl.  It is probably the sulfur causing the problem.

Must be feeling fine. Thanks, Aunt Pat!

The latest photos are in. Our friends vacationing in Italy and carrying us every step of the way. We should have been there, but can't. I really appreciate being a part of this marvelous vacation.

I even got a new purse!  (You guys crack me up!)

And happy day 4 to me!

Just Tired

As I approach my neutropenic low, I realized we have asked a lot of my body, and it is tired.  I am tired. So I rest.

Clinic today was fine except when it was not. I needed a magnesium boost, so my nurse hung a drip. I have had a few over the past almost 4 months with no problem. Today was a different story. I had a reaction. My head was on fire. No pain, luckily. I was given Benadryl and some time. Then I was given steroids and that did the trick. Note to self... Premed next time, or do a slower drip.

Nice, huh?

On a better note, my sister donated plateletes. 2 bags and did it in such a short time she didn't finsh her movie. Big Wehner veins. Thanks, sis!

Last noteworthy item Kent's parents are in town. Trish and Gene brought our third dog back to us for the winter.  Welcome home, Chip!