Sunday, September 8, 2013

It's been quite a while since I've felt like writing. I don't think I'd have been very nice.  I was covered in a rash that itched insanely.  After a skin biopsy it was found to be an allergy to one of my meds, one that protects me from getting a type of pneumonia.  I am allergic to all the meds for it, so now I have to go to pulmonary function to breathe in this foul tasting antibiotic that coats my lungs and protects me for a month at a time.  After the rash went away I still itch and my entire body is pealing off.  The bottoms of my feet are nice and soft, but my hands and a few other places are still pealing.  For a while I looked like I had the mange.  On a good note, my hair is coming back in.  It's about a quarter inch long in some places and stands straight up. I'm a little prickly.Otherwise I'm exhausted most days, I shake like crazy and I freeze all the time.  Apparently my system is changing.

I haven't been able to get passionate about anything I did before.  I'm going to try to get interested in my genealogy again. I can hardly remember how to do that.

I am 76 days old now.  On my 100th day I should hit a mile-stone.  I hope I am fully grafted.  I also hope I no longer have to wear the mask when outside.  Looking forward to that!

It's embarrassing but I am very forgetful so I hope this posting is not to bad.  I can check spelling but not grammar or readability. I will apologize now.

Friday, July 26, 2013

I am at day +32. I am feeling much better, though I am still weak. I'm not good at this weak stuff, but everyone keeps saying that it takes time. I got to leave the hospital July 10. I've done really well, but it is now a waiting game. My numbers were really great last Monday.

Whites: 3.8
Hemoglobin:  9.2
Platelets:  107

I haven't seen those kinds of numbers for at least 8 months.  It makes me smile when I look at them.  I have lost a bit since the hospital.  Let's see, a little weight, my strength, my color, my mind and my hair.  I'm just not so worried about my hair as it is the loss of strength and my mind that worries me daily.  After all there are wigs that could replace my hair, or hats.  How do you replace a mind?

My brother is my hero.  He doesn't like to hear himself referred to in that way.  He laid very still for hours while they removed his blood from one arm, run it through a machine to take out what I needed, then put it back in his other arm.  They did all his blood several times until they had enough of what I needed.  He had to take shots before hand that made his bones hurt terribly.  He went back to his work, which is running a local food pantry, in just a couple of days from the time of the transplant.  Our coordinator said she had not seen someone so eager and joyful about giving. Turned out we were a perfect match which made the whole thing easier for me. Oh yes, he was going to have his poor knees replaced but will have to wait a year now because, he was my donor.  He knew that but I just learned about it lately.

Thursday, June 20, 2013

Home Away From Home

My home away from home for a while.

Hope more later.  Feeling better today.  It was a good day.

Wednesday, June 19, 2013

Day-3 and Counting

So, third day into the chemo process. Not feeling so good and very tired. The nausea gets worse each day. I am on day-5 so I still have a long way to go.

This is not my favorite thing to do. My limit is 2 days in hospital then I lose my mind and they let me out. I have to be calm. I also hate to take meds. That seems to be all I do now.

Nice people working here. Everyone is clear about what is going on and I appreciate that a great deal.

Saturday, June 15, 2013


Well, I got the news Thursday that it is a go! All my paperwork is done. I am mentally ready for this. I know it is going to be horrible. I do have a problem with how long this process of healing will really take. But they are very clear how it goes each step of the way. The weeks in hospital, the months of trying to get stronger and the long time of watching for rejection.

They call your day of transplant Day 0 and the will be your new birthday. My Day 0, new birthday, is on the 24th of June which is my donors actual birthday. How much more poetic could that be?

Monday, June 10, 2013

Ready, Set, Go?

I know, it's been a while.  There has been a lot happening here and my energy level is just 0. I won't go over my numbers since mid-May, mostly because it is the same old thing.  I was transfused on Sunday but do not feel better, stronger or refreshed. Just exhausted.  I will be getting a CBC in the morning.  I know I will need platelets as I am becoming covered in ugly petechiae (tiny purple/red pinpoint bruises).  I won't stay to see what the numbers are as I won't have time. so they will have to let me know by phone. I have another appointment in Indy.

My sister was tested to be my donor but was not a match. My brother was then tested and matched!  What is even better he wanted to be the one to match so bad. I worry about if he will be ok.  I have been assured he will but you never know what is just around the corner.  He is worrying about me. He says are you sure you're ready to do this? They are very honest about everything from the beginning so he knows all the risks.

Today I only had 4 appointments. Last week I had 7 tests in one day. Today it was easy and tomorrow there is only one, a class.  I will be getting a POA and a living will done, too. After tomorrow I will not have to go back until admission, unless something crops up to reschedule it. So far my brother and myself have passed all the tests.  Everything is ready.  If there is a reschedule, it will be only days or a week.

I am ready.

Friday, May 17, 2013

Speeding Up........

Well, yesterday was blood day.  So was Monday but I had the test in Indy at the Bone Marrow Transplant doctor.  I had gotten 2 units of blood and 1 unit of platelets on Saturday so I knew I would be ok on Monday.  It was, hemoglobin: 8.3 and platelets: 22 (that is kind of high for me).  Both of those numbers were good for me!  Yesterday the numbers were, hemoglobin: 7.8 and platelets: 20!  So I may have made it one week without getting infused!  Very exciting for me.  It has been a while since that has happened.  But, I am at the end of the cycle.  The chemo will start again late next week.

So the whole transplant thing really scares me.  Not sure why, I just have a fluttery stomach when thinking about it.  Of course they were clear about all that will happen and all that can happen.  I'm not sure which of those scare me more!  There is a 50% survival rate for a bone marrow transplant. The process of the transplant itself is going to be unpleasant.

There is a lot to do to prepare for the transplant. Lots of tests to get.  They tested my sister while we were there, and have sent a test kit to my brother. If one of them is a match, it will go very quickly, so they say.  If not, I will be entered into the National Database of donors.  I don't seem to be able to think about it in any constructive way just yet.  It is just so hard to wrap my head around any of this.    

Thursday, May 9, 2013

Full Calendar for the Weekend

So, report for today?  Blood is 7.7 and platelets 6.  My entire weekend became planned in just a few minutes.   When my blood and platelets are in, most likely Saturday,  they will call me.  On Sunday, I will have to go back to the hospital for another blood test.

I have the appointment on Monday to the transplant doctor so they are filling me up. I need to walk upright into his office.

I have to admit that I am getting depressed over the constant need for transfusing.  I know that the chemo works for the 3 weeks off so that is probably keeping the platelets low.  But I am still not making my own blood.  I try to stay positive but I'm afraid it is getting harder and harder everytime.

Monday, May 6, 2013

Everything Is In Color!

On Saturday I had to go to a room at the hospital to get the blood.  I would rather go to the infusion center, but you do what you must. It wasn't terribly long or bad.  I took the laptop and was actually busy the whole time.  I also had a really nice nurse.

So.  Today was 'blood day'.  I told them if I needed anything it would be platelets.  I have ugly, little red spots and bruises breaking out all over me.  When the results came back, she said, "You were right about the platelets, they're 5."  Hemoglobin was 8.5 so that is good.  Guess what I will be doing later today?  Give up?  The infusion center will call when my platelets get here......

It has rained for days.  Today is the same, dreary.  I am suffering from allergies in a big way.  All the color outside is worth it.  Everything is in bloom and green.  Beautiful.

Thursday, May 2, 2013

Last Day of Cycle 4

Today was blood day.  Blood 7.0 and platelets 18.  So I have an appointment on Saturday to get 2 units of packed cells, or better known as blood.  I was so tired today I knew something was off.  I knew it was the blood count.  I am very nauseous  but it was also the last day of chemo this cycle.  I always get very ill the last few days of the meds and the first couple of weeks off.  At least I have the med part done for this cycle.

Ready for the rest.  It feels like I recover during these 3 weeks.  I am going to try to sleep in tomorrow.

Tuesday, April 30, 2013

Cycle 4/Day 5

On Monday, chemo day 4, test showed my hemaglobin was 8.3, which is good.  I had the 2 units blood and 1 unit of platelets on Friday and actually hung on to some of the blood.  Unfortunately my platelets were 6.  So today I took my chemo early, then went to the infusion center and got 2 units of platelets.  For some mysterious reason sitting for hours tires me out.  How does that work?  My backside falls asleep making me wonder why at least a part of me isn't refreshed when it's over.

When I get chemo daily I stay accessed.  You can close your eyes if you want, but here is my port accessed.

They just plug me in.  Simple and no needles, blood or bruises......:)

While I was gone today a packet came with papers to fill out, instructions, directions and the appointment to the bone marrow transplant doctor.  Whoa.  Nerves and chemo do not mix!  After everything I've had to do, I did not think I would be so nervous when I had to "go there".  I have less than 2 weeks to deal with the nerves.  I'll deal with it. I hope......

Thursday, April 25, 2013

Here We Go Again - Cycle 4

My 'week off' was over as of yesterday. I started my 4th cycle. On the 18th my numbers were: hemoglobin 7.9 and platelets 11.  No infusion.  On Monday they were: hemoglobin 7.6 platelets 11.  Again no infusion.   I did not think that was so bad but I really wanted them to be good.  Yesterday they were: hemoglobin 7.2 and platelets 9.  White cells stay between .09 and 1.5.  They were 1.3 yesterday. No improvement in the numbers.  Dr. O said that I would be doing at least 2 more cycles to see if they improved.  She is pleased with the bone marrow.  So I have day 1 of 7 down.

I am just about ready to go and get day 2 of 7 over with.  After a while without Zofran, I am back on.  I was actually very sick last night.    I should be used to it. On Friday, day 3 of 7,  I will get chemo and then spend the rest of the day in the Infusion Center.  It will be 2 units of blood and 1 unit of platelets.

On Saturday my eldest daughter will turn 40!  Does that make her old or me old?  What a conundrum!

Thursday, April 18, 2013

By the Numbers

I'm on my 'week off' chemo.  I get a week off to see if my numbers will improve.  Monday (the 15th) the numbers were the same old thing.  Hemoglobin 6.9 and platelets were 14.  So Wednesday I spent the day in infusion getting 2 units.  Today, it was again test time.  After spending Wednesday getting 2 units of blood, my count this morning was: hemoglobin  7.9 and platelets 11.  Only get infused when hemoglobin is 7.5 or below and platelets are 10 or under.   So the next test is Monday.  It takes 2 days to get blood for me because of my  weird antibodies.  By then, if I don't build up anything, I will be so tired.

 My life seems to revolve around numbers.  A frustrating way to live, that's for sure, but it could be so much worse.  So I will just be grateful for the good things happening.

Monday, April 15, 2013

The Unexpected

On Tuesday I got 2 units of blood.  I was in the infusion center so it went smoothly.  

On Wednesday I had the appointment with Dr. Cripe.  First order of business for the appointment was, of course, a blood draw.  The results were hemoglobin  8.1, platelets: 23 and white cells: 1.6. Not a great reading, for sure. We talked after the results and he said there had been no change in my blood so continuing the Vidaza was a waste of time.  I was concerned that I had fallen into the AML (Acute Myeloid Leukemia) and asked if he would be able to see that in my blood tests.  He commented that he would and when I asked if he thought I had he said no.  Relief there.  But, he said since the Vidaza was not working the option left for me was a hospitalization with chemo, I believe for 30 days.  I know the odds of that being a good thing, so I was scared, but I knew I had to do it.   He then did the bone marrow biopsy, which was as horrible as I remembered, and let me go home to wait for his Friday call telling me the results of the biopsy and when the new treatment would start.  My 'blasts' were 14% in December.  That figure put me in the 3rd stage of the disease, High Risk MDS. AML is 20% blasts.  Normal is 0 - 3% blasts.

I spent Thursday getting mentally prepared for his call. I was also thinking about what I needed to get done before the treatment , prepare for the worst perhaps.

Friday morning was my 'blood day' at the center.  Hemoglobin: 7.9; Platelets: 20.  I know where that is going, DOWN.  Same old thing............  There was nothing to do but wait for 'the call' for the rest of the day.  Long day it was!  No call.  In my mind the dialog went like this: He had a busier day that he planned.  He got called away.  He was unable to get me a room in IU just yet.   It was so bad he didn't want to ruin my weekend.  He was abducted by aliens. . .   Ok, that was a stretch.  I knew he wasn't in on Saturday, so I relaxed and decided I was lucky to have the weekend.

Saturday morning I was relaxed when the phone rang.  It was him!  He quietly told me he had the results and they were surprising.  My blasts were 3%!  That is in the normal range!!  He said even though my blood work did not reflect any change, the treatment had worked beneath the surface.  My bone marrow had responded.  He told me a Dr. Nelsons office would be calling, setting up an appointment to get ready for the bone marrow transplant.

So quick and unexpected!  I will be talking to Dr. O on Wednesday and I hope my brain kicks in so I can ask intelligent questions!

Sunday, April 7, 2013

It's Almost Time

I love a rainy night.  The air feels all springy and soft, and the rain is banging against the patio.  'Good sleeping weather' everyone always says.  I'm afraid I took my nap this afternoon and spent too long at it.  I'm going to pay for that now.

Took a zofran a short while ago hoping to at least make a dent in the nausea.  I've lost too much weight in the last 10 days.  Once you've stopped eating it's very hard to start again. Big surprise to me!  I couldn't tell you one thing that I want to eat.  I can get it in my mouth but swallowing it is another matter.  I stopped watching the Food Network because my stomach would just clench at the sight of food.  I love Food Network normally.

Today was the special "blood day".  I had to go into the infusion center for a CBC.  Blood count was 6.7, which explains the deadly tiredness that holds me in it's grip.  Platelets were 27.  On Thursday they were 19, and that means that I actually made platelets myself!  On Thursday my hemoglobin was 7.6, which means I didn't make any blood.  I have an appointment for 2 units of packed cells on Tuesday.  It takes that long to get blood for me because I have so many antibodies.  I have a hard to match blood, and end up with 'least likely to cause a reaction'.  That means a dose of Benedryl through the port, which is a mind-blowing experience and Tylenol.  Keeps me groggy for a while.

Well, anyway, I should feel stronger for the trip to Indy on Wednesday for the dreaded bone marrow biopsy.  This thing scares me on 2 levels.  The first is the painful procedure itself.  The second is that it will say if 3 cycles of chemo/Vidaza have made any changes at all.

My laptop came.  Just mine, no sharing.  I haven't felt like doing much on it, but I am doing this blog post on it.  The first one.  This thing has Windows 8, which is not so bad when you figure it out.  They should all come with a small how-to.  Just one instruction on it.  How to find "Start".  Once you've figured out where everything is, you are ok.  My problem now is how to transfer my huge files from the desktop to this one.  The DVD burner refuses to work, just quitting in the middle of the burn.  The old thing has Vista with 1 1/2 GB memory.  A problem to solve when I am feeling better.

Tuesday, April 2, 2013

Platelets and More

Well, Monday was blood day yet again.  The center was busy, as was the lab.  It took awhile to get the results.  I knew my blood count was getting low but thought the platelets were fine.  The result: blood was 7.8 (they only transfuse at 7.5 or below) and platelets were: 4.  Again with the 4!  So my Monday night was spent at the hospital, I lucked out and was put on a different floor, getting yet another bag of platelets.  It wasn't a bad experience this time but, I had stayed accessed after the labs at the Center.  So no one had to do anything except plug me in.  I am tired of it, though.  There is a bruise over my port from Fridays adventure in platelet getting.  I did not bleed very much when they pulled out the access needle, which is a good sign!  Now I hope they stick around this time!

The port is a wonderful thing.  It's called a Power Injectable Port.  It's implanted below my left shoulder.  It's accessed by a needle system that can be left in for a few days or taken out each time.  When I'm getting chemo each day I leave it in.  Between the blood tests I have it out each time unless I have to be transfused.  I seldom even feel the needle going in.  Love it.  No digging around for veins.  The lower your blood count, the smaller your veins are.  Not a pleasant way to pass time.  My lowest hemoglobin count was 4.6 and I fainted in the ER.  (A normal level  for an adult female is 12.0 - 16.5)  Anyway it was very embarrassing!

After a weekend with a killer headache I feel pretty good today.  A little tired.  It's sunny and looks like spring out there.  My first sight at the window this morning was a rabbit out in the grass.  Not a bad beginning to a day.

Saturday, March 30, 2013

One Bad Night

On Friday my blood count was 8.0 and platelet level was 4.  I was covered with petechiae, tiny pin point bruises, so I knew it was low, I just had no idea how low.  Since the Infusion Center is not staffed after 6, and to transfuse you must have 2 RNs present, I had to go to the hospital, and upstairs to a room to get the platelets.  I did not get home until after 11 p.m.  I was stressed and had a monster headache.  I will not write the horrible experience I had, only that I do not want to ever go to that floor again.  Not that anyone will ever listen and let me go elsewhere if it happens on the late or over the weekend again.

There was a bright spot in the evening though.  I met an old friend from high school.  I had not seen her since then.  That part was great.  We graduated the same year.  (1972)

On Monday it is back to normal.  Monday is blood day.  We'll see if this one 'took' and if the pounding in my ears is left over stress or that my blood level is now very low.  I've forgotten what life was like before.

One great thing. I ordered a laptop.  How do you sit and wait patiently for it to come in?  I am not a patient person.  I am very excited about it!

Monday, March 25, 2013

Cycle 3/Day 6

Today was day 6 of chemo.  It was also "blood day", better known as CBC day.  I knew that I still felt like my count was low, but I was surprised since I got 2 units of blood and 1 unit of platelets on Friday.  The test today said my blood count was 7.1 and my platelet count was 6.  Less than a week ago my platelet count was 12, then with the infused platelets it should have been good.  So, I got the talk, no sharp playthings, no shaving and no bruising.  Right.  Life is full of all of them.  I have to admit that I am shaken.  This time it lasted only 2 days.  No change in my numbers and more need for blood doesn't seem like things are looking up.  Now I am very worried about the next bone marrow biopsy.

Another 6 hour day in the infusion center.  I'm very tired.

Saturday, March 23, 2013

Another Long Day

Yesterday, Friday, I started out with my chemo (Vidaza).  Then off to the infusion center for 2 units of blood and one of platelets.  I have to admit I was quite happy to get there as I was slightly dizzy and so tired.  It was a long day though.  I got there around 10:00 a.m. and left about 4:00 or 4:30.  I have many antibodies so the blood seldom matches exactly but, the first unit did.  Surprised the nurses too!  Unfortunately the second unit was the "least likely to cause a reaction" which meant Tylenol and intravenous Benedryl.  I wanted to go to bed the minute I got home.  I tried to stay up but fell asleep despite my intent.  It was a 10 hour night for me.  Very stiff sore morning...  I never feel great right after I get blood, but the dizziness was gone.  This afternoon I will notice a difference.   The nurses in the Infusion Center are wonderful.  I also give thanks for the people that donate blood.  

On a lighter note, my sister is on vacation.  She sent me photos of where she was  earlier this week.  Noccalula Falls in Alabama.  It was my favorite place when I was a child.  We could not go down to visit family without stopping there, mostly just to make me happy.  Loved the photos!  Lots of text messages from her too.


Monday, March 18, 2013

Cycle 3/Day One

Last Monday, the 11th, my count was 7.6, but my platelets had risen on
their own from 16 to 32!  Count was below comfortable so blood was
ordered and on Wednesday, the 13th, 2 more units over another 5 hour
stay in the infusion center.  It had been 15 days since the last transfusion and I
was so hopeful that my own marrow was finally kicking in making my very own

Today was my appointment to find out if my numbers are improving.  Started out with labs, then a talk with Dr. O.  The count was first, and not a good reading.  Hemoglobin was 7.5, and it has gone that low after getting 2 units just 5 days before.  Platelets are at 18, that is down 14 points.  Then the discussion of numbers with Dr. O.  My numbers have not improved.  I don't know what to feel.  Just kind of numb with a little bit of brain drain.  I'll think about it later.  At any rate, another count on Wednesday, then a trip to the infusion center, probably Friday, and 2 more units.  I am so tired that I am almost looking forward to it.   But it is always a very long 5 hours.....

So, it was my first chemo day of cycle 3.  Just 6 more days to go.
After this cycle I will be going back to Indy for another bone marrow
biopsy.  I even have my appointment set up.  I've had 2 biopsys already and they hurt.  I am not looking  forward to it.

Thursday, March 7, 2013

Cycle 2; Week 2

Last Thursday my count had my hemoglobin at 9.0 and my platelets at .9, so it was transfuse platelets again.  I'm still fighting the cold, though it is better, so I expected this to be another bad week for the numbers.  Monday my hemoglobin was 8.5, platelets were 16.  I don't have to transfuse platelets if they reach over 10, so I was happy.  After a week of such exhaustion I was sure the tests today would be low.  I had already gave a weekend day over to transfusing.
Today's numbers were great!  Hemoglobin was 8.1 and platelets are 26!  My white  cell count stays pretty much around 1 so I don't look at it anymore.  I have increased my platelets without being transfused and the blood drop was minimal! I hope this is good news and I'm on the way up!
Another good thing is being upright more now.  I have not napped as much, though laying down is not napping.... just a 'rest yourself for a minute' kind of thing.  I've made it to the nightly news for a few nights too!  Just no energy to spare.
The wild, colorful dreams continue.  I don't know what that is about or what is causing them.  Perhaps a side-effect?  A very strange one.

Monday, February 25, 2013

A Journey Into Life?

I am usually trying hard to blog without getting personally involved.  I suppose you could call it hiding.  I have felt the need to step out for a long time.  Now I have been given a little push, and I hope I get better at it as I go along.

I have been ill, perhaps I should say feeling terrible for a long time.  Very exhausted, unable to get over anything I caught, bruising without any injury, and a general feeling of not being well. Then after a CBC was taken my blood count was
5.7  Needless to say I was admitted and given blood.  Many tests, including a bone marrow biopsy were done and the word was, "we don't know what it is, but it is some kind of cancer".

I was sent to a Dr. Cripe in Indy who is a Hematologist/Oncologist at the Simon Cancer Center.  How did I get so lucky to end up with the best?  He is wonderful and I am not the only one that thinks so.  His reviews are great.  Anyway, he did another bone marrow biopsy and diagnosed me a few days before Christmas.  It was High Risk MDS or High Risk Myelodysplastic Syndrome. (For anyone reading this that has the disease, my blasts were 14.  I would love to hear from you!) There are a lot of articles on what High Risk MDS is online so I won't bore you.  I'll talk more about it as I go along.

Last week I was in hospital with a cough and fever.  My platelets were 10 so I was transfused with platelets.  I spent my Sunday getting 2 units of blood.  I no longer make blood.  My body doesn't make mature cells anymore so I am alive only because of blood donors.  If you don't think donating blood saves lives I am here to tell you that you are wrong.  Sunday I had my 18th and 19th units.  If it were not for you I would not be alive now.  You have given me time to get treatment. I do appreciate all of you so much. Thank you.

I have just finished my 2nd cycle of the chemo meds, called Vidaza, and now have 3 weeks off to try to talk myself into eating, getting out of bed, and in general living.  We are lucky in our little town to have Schneck Cancer Center.  Otherwise
I would have to go daily to Indy for treatment.  I think we are also lucky to have such wonderful nurses there and my local Oncologist, Dr. Olivarez, is so wonderful.  

At the end of this journey I will have to have a bone marrow transplant.  I could find very little about that, so I asked my favorite nurse at the cancer center about it.  With my permission she talked to someone that had already gone through it and asked them to call me.  He called me today.  He was so nice.  I am still scared, but scared with knowledge, not that it means anything....:)  One of the things he said was that he didn't feel so alone and depressed when he started talking about his
journey.  So here I am.