Day +1

" Happy Birthday ", screamed hospital staff as I rounded out the last few hours of my bone marrow transplant.  My new life had already begun...

Today promises to be an even easier day ( yesterday was no picnic for sure - but hopefully today will be the beginning of an entirely different set of complications...

The next two weeks are critical.  I ill be receiving anti rejection regiments coupled with anti-nausea meds and a series of blood transfusions.  They will be dealing with any complications as well, should they arise.

Just knowing that I'm on this side of It is so reassuring and comforting.  

I found out I am able to meet my donor in a year.  I still drop my jaw when I think how incredibly generous a donor is.  In fact, I found out my donor gave twice as much marrow as needed just in case I had any complications.  I didn't,  Thank God.  But how amazing is that when a stranger goes through all that for someone they have never met.  I feel so incredibly blessed to be alive to type this note to you all.

The love and support from my family and friends has been overwhelming.  Now I get to add one more name to the list - my donor's name as soon as I find out what it is.

I Hope everyone has a blessed day, because I'm looking forward to many, many more of them....

Day 0

Day 0 is upon me.  That means no more chemo and no more radiation.   I'm. Just waiting here for my transplant.  It will be around early morning today...

The weakness, nauseia and vomiting will persist over the next few days. But it will all get easier and easier.  They've been feeding me through the IV .  Hopefully over the next week for so, I will be able to eat with my mouth. 

There are goifng to be ups and Downs, but the Downs are only a pitstop.  It's the ups I'm looking forward to.

For now, just let me say that I'm greatful for Day zeros.  It also means so much to me all the love and support I'm receiving mfom all of you. ...

Day -3

Well, day -3 is almost behind me.  Chemo is over, and I'm on a regiment of total body irradiation.    All of the residual from the chemo are in full force.  I have constant vomiting (even while hanging on the wall receiving radiation).  I don't want to go into all that is happening.  Let's just say it's more than anyone shroud have to deal with, and trust me when I say you don't really Want to know.

I keep telling myself that I have to keep pushing forward.  Going back is no longer an option.  It only means certain death for me.  So I have to just keep pushing up out of this valley and on into my new life.

It's terrible beyond words right now, but they keep promising me it will get better and better.

The one constant that helps me go through his is knowing that the Lord is my shepherd, I shall not want, He makes me to lie down in green pastures, he leads me beside the still waters, he restores my soul, He leads me in the path of righteousness for his mane sake, and though I walk through the valley of the shadow of death, I will fear no evil, for you are with me,  your rod and your staff, they comfort me, you prepare a tabs before me in the presence of my enemies, you anoint my head with oil and my cups runs over, surely goodness and merci will follow me all the days of my life.  And i will dwell in the house of the Lord forever.  Amen!

Day -6

It's 7:00 am and I'm just waking from my first chemo session to kill my bone marrow and begin preparing it for transplant.  I'm getting session two today.  They completely knocked me out for the process.  I'm so grateful for that.  Here at the City of Hope, I have my own room (of course) with a beautiful floor to curling view of the mountains.  The staff is so great here.  Although the process is going to be the most radical yet, I know this isn't just treatment.  It's the cure!  Thank God.  I also don't feel so alone here like I did in the hospital.  Here I'm surrounded by people going through exactly the same thing I am.  And with the physical theorapist, doctors, patients and all the things to do here, I don't feel so alone.  I'm able to setup the two way video conferencing, so I get to kiss my kids goodnight each day.

I get blocked tomorrow in radiation where they make the final measurements and cover me with blue-black ink that looks like tattoos.  They're not, thank goodness (I asked).  They only last a few weeks. 

In any case, I seem to be handling it OK so far.  You can't see it in the picture, but im hooked up to about eight different IV meds.  The main one is the chemo.  The others are all support meds and are coupled with handfulls of oral meds (one of them is a horse pill).

Into the single digit countdown - yay!

Day -10

Well, today is day negative ten.  The countdown clock has officially started.  I didn't realize how freaked out I am about the prospect of going through all of this and about the challenges ahead as I come out the other side. 

It's 4:00 in the morning, and I'm staring at the wall.  I can't sleep.  On this official countdown day of t-10, I have an appointment to get a pick line installed.  I guess past experience tells me that this is the day when I officially become tethered to the hospital.  And I will be until the day they remove it and send me home.  They'll be feeding me through it, administering medications and chemo through it, transfusing blood through it, drawing blood throigh it and anything else that would normally be done through through an IV or needle poke. 

Day -10 means I'm getting admitted in three days.  Getting admitted means I start chemo.  Starting chemo means I Start all over full body radiation.  Starting full body radiation means I'll be hanging from a harness on the wall while they envelope me in radiation from across the room while watching me on closed circuit TV.  For some reason, that is scaring the crap out of me.

Day -10 also means I'll be admitted in a few days.  And being admitted means I'll start isolation.  Being in isolation means I can't see my kids for six weeks.  And I'm already stressing out about that a little bit. 

I found out that I had a one in five thousand chance of finding a donor match, and they actually found one.  And now here I am just a few days away from being admitted for transplant.  It doesn't seem real.  But here I am staring at the wall at 4:00 in the morning while everyone in my house sleeps soundly waiting for the sun to rise to start another new day.  This is about as real as it can get.

I look forward to many many more years of waking up to the sun rising and starting a brand new day...

Transplant is All Set

I had my appointment yesterday at City of Hope. I had another bone marrow biopsy (it was horrendous as usual). But I got a promise from the Dr. that all future bone marrow biopsies will be done under heavy sudation. I will be completely out for the rest of them. YAY! Pray you never need one… I’ve had NINE!

It looks like my transplant is set in stone. I start pre-transplant procedures next week. They’re installing a pick line (an internal catheter that runs from underarm into my body around the general area of my heart). That line will stay in so they can feed everything they need through that line (food, blood, medications, chemotherapy etc…) They are going to start daily injections to build up my mucosa – (the cell lining that makes up the inside of your mouth, stomach and intestines). That way, when chemo and radiation strip away my stomach lining and intestines and the sores in my mouth start forming, the extra layers of mucosa will help buffer the severity of the reactions.

I will be receiving high dose radical chemotherapy and full body radiation for 9 days preceding the transplant.

I’m being admitted on the 19th (that’s next Saturday), and my transplant day (day zero) is on Sunday, the 26th.

This is exciting and scary at the same time. It’s going to be terrible, but I “think” I’m ready. Bring it on. Let’s get this thing over with. Once it’s over, and I’ve recovered, I will be cured. Recovery will take quite some time, but once I’m recovered, I can look forward to celebrating my 90th birthday (or more)…

I'm Ready For My Close-Up

Well, I spent the Memorial Day holiday weekend in the hospital. The last chemo really took a toll. Apparently you can’t live without blood. I went unconscious at home again, and was taken to the ER where they started a 36 hour round the clock series of blood transfusions and medications. I was losing a lot of blood to internal bleeding, and they needed to stabilize me before they could do anything further.

All of my blood counts had gone straight down. My white cell count (immune cells) went down to .06 ( should be 4.3 – 10.8 ) and my red cell count (hemoglobin) went down to 5 or 6 (should be 14 – 17 ).

Once they stabilized my blood counts (white cells at .09 and hemoglobin at 8.9) and temporarily stopped the internal bleeding, they were able to give me an endoscopy and a colonoscopy (camera down the throat and up the … from the rooter to the tooter as they say). They were looking for signs of hemorrhaging in my stomach, upper intestines and lower intestines. They found some, and were able to inject localized medications while inside with the cameras. They also took one biopsy while they were at it. I don’t know the results yet.

I spent the next couple of days under observation hooked up to monitors in isolation. When they were satisfied my numbers weren’t dropping any more, they let me go home.

My white cell count is still only at .08, so I have to wear a mask (even in my own house), and I can’t go out in public yet. Everything has to be so sterile, and I have to eat a specific diet that doesn’t include anything fresh. I still have severe bruising all over my body, but I’m feeling so much better.

My youngest daughter, Naomi, got so upset when I came out of the hospital wearing the mask that a friend of mine suggested we all make a craft project out of the masks. So that’s exactly what we did.

Transplant is just around the corner, so I won’t have to endure any more chemo for the leukemia. No more trips to the ER. No more bleeding. No more bruises. No more masks. No more isolation. No more…..