Relief

First day of clinic. Got 2 bags of fluid to help the new cells. Unfortunately it really takes 6 hours to infuse, plus some time to wait and draw blood. So, for the next 28 days it will be a 7-8 hour clinic every single day.

But we will handle this one day at a time.  Sometimes just one minute at a time. Kent got to sit and stare at me today. Relief is on the way. My Sister, Melissa, is on her way right now. She will return home Wednesday.

I was told to expect to feel icky for about 2 weeks. So 2 down, 12 to go.

Dexter is concerned.

Don't worry, Dex, momma is in good hands.

1 Down, 99 To Go

I got released from the hospital today. It's a good thing and I will get a good night's rest.

Until 5 am. That's when I get up to go to the clinic for a 7 am appointment. We have at least 30 days of daily visits, and it could be as much as 100 days. I know as I get better and stronger I won't have to go as often. Looking on the bright side!

But, my release comes with a string attached. I have brought home with me a portable pump that infuses a medicine called ProGraf into my central catheter line to assist with the stem cell transplant I received yesterday. (Thanks, Bro!) This pump rums 24/7 delighting me with its soft pump sounds. <<sarcasm.

My dogs were glad to see me. We had a little frisbee time, but it got chilly.

Today I had to say goodbye to my visitors. Mom and Dad left about 11 am and headed home. Ed and Marie visited for a while, too, then headed out. They will probably drive home early tomorrow. (But if Ed is anything like his Dad, he may try to leave today and drive all night!)

Our alter egos are in Tuscany having a great time.

Last bit of news is I think my hair is starting to grow back. There is a bit of a 5 o'clock shadow going on up there. Yes... Dark shadow.

Transplant Day

This is called Day 0. The medical staff bases the timeline on this. Day 14 I should feel a LOT better. Today? Not so much. I am constantly nauseated. We are changing my medications to cover the gaps. Let me tell you, the gaps suck.  I can't wait to crave food again. But that is not the case right now. I am trying really hard to eat. Luckily I have eaten really well at home before the radiation and have a nice fat reserve.

Marie went to donate plateletes. They couldn't take hers. Thank you for trying! (Even her sad face is cute!)

Ed is getting his port removed. I am waiting for stem cells. 

Gross alert

Dr. Morris saw me and asked if I wanted to be discharged today. The way I feel right now, no. Let's get the nausea under control. Maybe tomorrow. He even said I could stay here until my low in 5-7 days. Nah, I do want a break at home.  So, at my low, they expect me to come in again so they can closely monitor progress.

At 1030 I got premedicated with Tylenol, and Ativan which will make me sleepy. I am on a heart monitor, and blood pressure cuff. My vitals will be checked every 15 minutes.

First visitor today. All is well.

There's always room for cake.

We all had to have some to celebrate.

At 1115 the stem cells are hung and infusing. Thanks nurse Karoline.

The infusion took a long time.  I fell asleep. After a good nap, I ate my lunch. Now I am thinking of another nap. We will call this energy conservation. The family has spread out and will come back later for a visit.

Since Kent and I were supposed to be vacationing in Italy, our friends made little figures so we are always with them. Here we are at the Vatican.

So at 2 pm I woke and felt much better. At 4pm I got out for an hour walk. That'll do ya good. 

Now I actually am looking forward to another anti nausea medicine and dinner. Doin' good.

Everyone had a big day, but it went really well.

Thank you for all your support!

Hail! Hail! The Gang's All Here!

Well... Not everyone is here. That would be crazy crowded. But everyone is here in spirit.

Today is Ed's stem cell retrieval day. It's a big day. He had a catheter placement this morning, just like mine, and now 4 hours of fun and he can't move. At least he can move his arms with a catheter in his chest. He has been having bone pain the last 2 days. I hate that. So they are giving him a Percocet. Hope it works quickly. He started watching a movie and got a headache and agitated.

His blood pressure dropped quickly for some reason. From 140/79 to 89/37. So they pushed fluids, gave him hot packs and cold packs and now he is eating and drinking. The pain is lessened, but not gone not fast enough. Got a second Percocet.

My hero. Hang in there, bro. This pain is temporary. This treatment will cure me for a lifetime. How can I say thank you enough?!

 He is much better now. I think this one was fake.  I have that face.

Last TBI for me. All went well but I could have effects 2-6 weeks from now. I only needed 2 lying down but they marked my up for that.

You don't get to see the front. They said I have big lungs. Yah. I yell a lot.

By 2 pm he was disconnected and off to eat. And relax.

I am done with radiation.

Ed got a dose of plasma at 3 pm. He was much better by then and released for the day. They take his catheter out tomorrow.

The actual collection went well. Dr. Morris called him a show off. They wanted 8.5 million stem cells. Ed gave 17.27 million. Wow. Rock Star.

So, I started my ProGraf. It is to prevent graft vs host disease. You can kind of think of it as anti rejection drugs. I will have a portable pump 24/7 for bout a month. Wow.

Tomorrow between 9 and noon I will get my donor cells. It will about a one hour infusion. Pretty anticlimactic, I am told.  Let's hope they are right.

That's it for the night. Hang it up and get some rest. We will convene again tomorrow.

Thanks for all the good thoughts. We are getting this done one day at a time.

Staying Put

The first double dose of radiation kicked my butt. That and the high dose chemo. I got sick, went home and slept. When I woke from my nap, I had a fever, called the doc on call and was told to be admitted. So I checked into the hospital late on Monday the 13th. They quelled the nausea and helped me sleep. I was able to do my two radiation therapies yesterday, but mostly slept the day away. I did my two total body irradiation sessions today, but was a bit more active.

I am getting out and moving, but am slow. No pain. Just tired and woozie. I am on scheduled anti nausea injections and they are working. I still don't have an appetite, but am trying. Cheese grits and cheese eggs for breakfast, turkey dinner.  I am in good care. Plenty of fluids.

I can't imagine trying to do this outpatient. The anti nausea drugs are given interveniously. In addition, I have many drugs to manage. Some are once a day, some are twice a day, some 3, some 4. It is very complicated. I am glad I can not worry about it for a little bit.

I do miss home, but it's just one more day of radiation, then I would get checked in here anyway. Might as well stay and be strong for Friday's transplant. Mom, Dad, Ed and Marie are on their way down. Tomorrow is donor day.

October 15, 2014 – Wednesday       Ed drives to Atlanta with Marie from STL     (Mom and Dad are driving separately)       ​

7:00 AM ​Morning Neupogen Injection​At home/As directed

7:00 PM ​Evening Neupogen Injection​At home/As directed

NOTHING TO EAT OR DRINK AFTER MIDNIGHT IN PREPARATION FOR YOUR CENTRAL LINE IN THE AM.

 

October 16, 2014 – Thursday                   YOU WILL NEED A DRIVER!

 

5:00 AM ​Morning Neupogen Injection​At home/As directed

6:00 AM​Register for catheter placement​​Northside Hospital Main Admissions

8:00 AM​Catheter Placement​Interventional Radiology

Please be sure to come to BMT Clinic immediately following your catheter placement to begin stem cell collections

To Follow​Begin Stem Cell Collections​The Tower, Suite 1000  

Hopefully they will feel up to visiting me in my room. Doubt it. That's  a long day.

My alter ego made it to Italy. Also tired.

Oh So Tired

Last night as Bev was driving me home I got sick. All I had the energy for was to go to bed. During my nap, I spiked a fever. When I woke and checked it was 102 so I grabbed my phone. And had trouble calling. So when I got the landline and got the physician on call back on the line it was 101.7. Trending down I was told to go to the hospital and we will test for infection.

So we drove to the hospital and I was admitted. A few more sick sessions, and thy gave me injectable Ativan that settled me, and made me sleep. I still got my two radiation therapies today and more Ativan, which made me sleep all day. The doctor said I might get released tomorrow. Then it's another outpatient total body irradiation and check back in on Friday for transplant.

I was able to eat oatmeal and my whole lunch. Dinner is still sitting there: just soup and a sandwich.

I had visitors. Tony was the designated driver in the morning rain. Janna was trying to donate, but joined the rank of unable due to low iron. So Shannon gave an extra bag and Glenda her faithful one.  Thanks for donating!

This was me most of the day.

This was where I had planned to be.

Kent and I headed to Rome, Italy for a 2 week vacation through Tuscany and the Amalfi Coast with 4 other couples. Luckily Kay made "flat Stanleys" so we won't miss a thing. Thanks, you guys! I can't wait to see the updates! Have extra fun for us!

I am getting the greatest care possible, so don't worry about me!

Last Big Push

I

It wasn't so bad getting up this morning. We sailed through traffic, thanks to he HOV lane (and maybe Columbus Day).

This is day one of radiation, and my only day of chemotherapy. 4 days of radiation, then Friday is the transplant. After that there is no more chemo or radiation acheduled. That means my hair can come back! But most importantly, all I have to do is heal and wait for the transplant to do its job.

It's one more hill to climb, but with all the love and support behind us, we are not so much climbing it as being propelled forward. Thank you!

Tired. Goodnight