Bone Pain

Wow. Last night sucked. Bad. It wasn't a 10, but this was the only photo I had. ( I stole from Linda. )

So, my body went from not making any new blood cells in my marrow to building new blood quickly. Like "drag race smoking tires" fast, thanks to Neupogen. A side effect is bone pain and I got it in both knees and hips. We knew this was coming, and I have a prescription for tramadol 1-2 pills 4-6 hours apart. The first time I got the pills in the hospital they gave me 2 at one time. I felt no pain, but was dizzy, disoriented, and was afraid of falling. So I took only one last night at 4 hour intervals. I don't think it was enough. When I finally got to sleep, I was wakened by a hot flash and had to start over. That occurred. Over and over throughout the night.

Hot flashes. That's right. Another fun side effect of chemo. The nurse yesterday was telling me she has a 32 year old woman having them. How fun. Now I understand what my girlfriends are experiencing. 

I wish I had the energy to write more. But I don't. Today was spent in bed napping. Tomorrow is clinic with Buffy. Probably no more Neupogen shots since my numbers are up. That's good. Now.. When is this pain going to subside?

Thanks for the cheer up gift from BRU, Dave! Pierre is the best beer guru ev-aaaaarrrrrrrrgggggghhh!

Merci, Pierre!

Up Swing

Yesterday my white blood cell count count was .1 and I thought I was just about at 0.0 meaning the chemo killed off everything. Well... Today it is .4 so we are on the upswing. That means I have healthy marrow making blood as expected. I am doing daily Neupogen injections will helps build up marrow. The side effect will be bone pain. I have experienced it the first time in the hospital. And it was bad. I took 2 pain pills and had to redose after that to be comfortable. The next time I was at home. I took one at the first sign of pain and was nearly pain free. Once and done. Whew! That's the plan for this time. I will NOT get behind the power curve on this one. Just took one at 8 pm. Crap. Here it comes.

Plateletes are continuing to fall, so I got a bag today and get tomorrow off. My potassium is up, magnesium up, and protein holding.  I tell you what, it's a lot of work to think about the chemistry of eating to be sure I have good numbers. This is the last day of steroids, yay. They spike my blood sugar, so I have been careful what sugars I eat. I forgot to watch the carbs. The hamburger bun I used for my egg sandwich made it jump from 95 to 165. Oops.

Last night was the first time I had to take a Tums for indigestion. Chemo is expected to tear up the gastrointestinal tract, and I have been lucky so far. They have "Pepcid as neded" on my medicines list, but haven't needed it so far. More monitoring.

On the way home from clinic I got to sit in the car at Lowe's. Whoo. Hoo.

And in case you were wondering what color my toes are... They are Gill Grape. Thanks, Kim!

Tomorrow is a day off. Ahhh..... I will sleep in and rest. This low period kinds makes me tired. My energy is a 6 out of 10. I have felt so much worse after flying a red eye.

I got this.

Steroid Farts

It's not me. It's the dog. I mean it! 

Dexter has a foot problem that flairs up once a year. He is on prednisone (steroid) and an antibiotic and it is clearing up nicely.  It think it's something in the yard, but we have been wiping his feet every time he comes back in the house, so I don't know what's up. We do not feed him anything but his regular dog food, since we know he is allergic to corn, wheat and soy. Maybe I need to be giving his a warm foot soak each day. Can you say spoiled? He's worth it! 

But the smell! Dexter! No more steroid farts!!

Mary brought me to clinic today. (Thank you!) We arrived early, and I only needed two units of blood.  We were done in record time (2 hrs), but had to be seen by the weekend physician's assistant who went to the hospital. Then came back and had others to see. I heard them talking about me, and my nurse was trying very hard to divert the PA to me, but you can't push a rope. (Unless you wet it and freeze it!) 

Patience is a virtue. I am learning. So when the PA and Dr. Hollnd did rounds, and I was released with instructions to return tomorrow for a PICC line bandage change and platelets. They were at 28, just above the threshold of 20. They were considering waiting until Tuesday, but Monday works for me. I can ride in with Buffy Monday and Wednesday if we do every other day.

My blood chemistry is being closely monitored. Areas I need to work on are protein intake, magnesium, and potassium.  They gave me a sheet with food suggestions and this is the meal I came up with. Tastes good, high in potassium: artichokes (425mg) beans and spinach (838 mg) over brown rice. I don't think Kent would appreciate it, but hopefully my body does. If I don't get enough potassium. I will have to have a two hour drip to boost it. Bananas and oranges in the morning will help, but I have to watch my glucose since I am on steroids. It's a fine line, for sure.

Last bit of thought.  My nurses gave me the advice not to overthink from day one in the hospital.  I have certainly taken it to heart and hope you do too!

This came in a gift and is so timely! (Thanks, Martins!)

Home Alone

Mom flew home today (first class in a Boeing 757!) and Kent went to work. Gives me no excuse. The house is in order and I have an early clinic. Considering I missed out on 3 hours of sleep last night, I could use some rest. But thanks to the steroids, I might have a repeat tonight. Steroids are on the schedule for Sunday and Monday, then done.

We had a great morning just chilling on the deck with breakfast until it got warm, then I got out. With my hair.  Mom drove me to publix, and I waited in the car. Who-hoo.

Kent found my hair. Not a bad look, but he chickened out and didn't wear it to work.

Nice little bit of rain this evening after a stunning perfect day. Good sleeping weather.  Except Annie doesn't like thunder. Hope there won't be much.

I am still in good spirits, eating and drinking well, plenty of energy, not nauseated at all. Lucky girl.

Tomorrow will probably be a dose of blood and platelets, since I am sure I am at absolute zero. (Neutropenic, no immune system, vulnerable.)

As always, we hope for a short visit. Don't get me wrong, the staff is wonderful. But it is not home.

Transplant Process

With every chemo, there is a time when I am neutropenic. Today is that day. It's like being a newborn baby with no immune system. None. 

It will be the same during the days around the transplant.  Also we will also have to be aware of the side effects of the transplant/graft itself. The transplant cells may march into my body and say "hey! This isn't home! Attack!" Not cool. But there are drugs to help them get along. The best case would be they come in and say "Nice place. We will live here. Hey, look! Leukemia! Attack!" That will be the time when we say I am cured and my body once again takes care of mutated cells.

The details about the transplant will be given to me soon, but here is what I understand to be correct. 

I will complete my next round of chemo (cycle 2B) on or near September 2 which will require about 4 days in the hospital. (Yes.. 2 more lumbar punctures...) Then within 60 days of that chemo, we will need to do the prep work for the transplant. I have a feeling it will begin within 2 weeks.

The prep work has multiple steps.  One is testing at the clinic: bone marrow biopsy, pulmonary function test, ct scan, etc. Another day I will be meeting with scores of people for talks: the doctor, hospital finance, the transplant coordinator, etc.

Then we start the curative therapy, aka transplant.  When it's time for the transplant, I will be in the hospital 8-10 days prior getting very strong chemo and radiation to get my white blood cell counts to absolute zero again.  That will probably coincide with other medications to prevent bacterial, fungal, or microbial infections.

As we approach the day of transplant, Ed will come down for some testing: ct scan, echocardiogram and bloodwork, and an informational meeting.  Then he will take Neupogen for 5 days prior to the transplant to boost his cells and prep for donation. Hey... If I can shoot myself with an injection, anyone can.  (FYI Ed's birthday is Sept 24th {and CJF too!} some references call transplant day my new birthday. What if they are the same day? Weird...)

There was a lot of information thrown out, but I found this chart online. Transplant day is day zero. The 8-10 days prior are called negative days. The day after transplant is day 1. As far as I can tell, after the transplant there will be no more chemo or radiation, but fighting the side effects and hoping the transplant takes easily and quickly.

From day 1-30 I will have daily trips to the clinic for fluids and labs. This will be 8 hour days, 7 days a week. (Help! We will publish a sign up schedule for drivers.) After that, it will taper off to 4 times a week for up to day 100, then decrease to 1-2 times a week for a while after that, then... I don't know.

Day 0 is when I receive the stem cells.  I am told I will feel lousy for 14 days.

Day 30 tests to see how we are doing.

Day 60 tests

Day 100 redo the prescreen testing, then a meeting will be scheduled to see how if the graft has taken. I strive for perfection and will hope for nothing short of that.

Day 180 redo the prescreen testing.

After that, we have check ups at 1 yr, 18 months, and the 2 year mark.  Then follow ups every year for up to 5 years.

When can I go back to work? Don't know.

When can I socialize? Don't know. Have to be strong and healthy first. Not immuno suppressed.

When can I drive? Don't know. Not rushing this one since it will be a while until I feel "good". Feeling good is relative, and I am always seeing the glass half full. ALWAYS.

And of course one last question: When can I drink? I see you posting your martini or daiquiri or PBR.  My doc said I can have a glass of wine a week. Well..  It's the thought that counts.  I had a couple of sips once, but it didn't taste all that good. I guess my tastes have changed. 

But... Tonight I had 3 sips of beer. THAT was worth it! And tasted delicious!

Ok. So this is day 2 of a lot of information. 

Sit back and have a half full glass for me.  Don't forget to toast Maj. Happy birthday!

Go Fight Win

I have acute lymphoblastic leukemia (T-cell ALL). It is actually not rare, but definately not common. I have some abnormal chromosomes in my genetics, and my kidneys were effected in the beginning which is also not usual for leukemia.  All this means I do not fit the standard mold. Huh. Go figure.

I am in remission.  The last bone marrow biopsy showed no cancer cells. (Or if there were any, there were too few to count.)  In remission, we want the best long term course of treatment to prevent a relapse of cancer. The chance of getting into a second remission after a relapse are uncommon, so we want to continue treatment quickly and aggressively.

We had our talk with Dr. Morris about long term treatment plans. The two choices are chemo only, or chemo and radiation with transplant. It's a big choice. They have a team of 4 doctors and I don't know how many physicians assistants, nurses, and transplant coordinators who have been studying the case.

There is a 10% better chance of cure with transplant.  The doctor recommended transplant, so we will do the transplant. My brother, Ed, is a full match and will donate via a simple blood draw from a vein.  Then they do whatever they do to process out the stem cells and I receive it as an infusion.

My recovery, however, will be a bit tougher. The chemo and radiation are stronger and has a higher risk of side effects: nausea, vomiting, diarrhea, lethargy, rashes, mouth sores, etc. 

In addition, the transplant itself has a risk of graft vs host disease (GVHD).  This can be just a rash, or progress to liver, stomach or intestinal disorders. There are drugs to mitigate the effects. They suppress the immune system, so once again I will be susceptible to infection. 

The time frame for being on the drugs for GVHD could be 8 months or up to 2 years for a chronic case. The drugs used also can cause emotional side effects. Cool. <<sarcasm. But it will help to know the side effects are temporary.

I was warned that I will get stir crazy: no crowds, no shopping, limited visitors, etc.  I am already experiencing it, but it's something I have to endure as long as I am on the GVHD drugs, but as a minimum through Christmas. The last thing I need is to be hospitalized for an infection. Maybe I will just become Bubble Girl. There. That's safe.

As far as a timeline, I will get another round of chemo (2B) on or about September 2nd.  This may begin the process.  I am not sure. 

But I am getting ahead of myself. This is a big matzo ball. The easiest thing to do is take this one day at a time, all the while accepting nothing short of beating the odds and being cured expeditiously.

Have I told you how lucky I am? First of all, I had a choice. Second of all, I have an immediate donor. Not everyone gets one. Thanks, bro! (As if "thanks" is enough!)

I have to acknowledge you, my faithful supporters, for allowing me to share this with you. It's not a fun journey, but it's ... ummm  .... interesting. 

Lastly, I leave you with a song in your heart, and a couple of funny photos.

"Stop and smell the roses as you're walking by."    http://youtu.be/JuqR6tAfa2M

Kent has the gift of being able to sleep anytime, anywhere.

Guess who donated platelets! 

Mom had never even donated blood before.

What if...?

What if .... . Fill in the blank however you like. There are a million things to think about or stress about, but I remain focused.  Tomorrow we will be presented treatment options, and will make an informed decision.

But that's tomorrow.  Today I am focus on relaxing.  Although the lumbar puncture went well, I have that old familiar pain in my neck and shoulders. Last time I got it after the LP it lasted a week. I sure don't want that, but there is nothing I can do about it except lie down. Or take drugs. So far I don't need them.  Caffeine will help, they say. I will have some in the morning.