I Can See The Top Of The Mountain

Gosh.  I have so much to say today!!  It has been just shy of a month since I received my transplant, and I have been home a little over two weeks now, and things are still progressing!  I am still feeling good.  I have been getting out more, doing more things around the house.  I even cooked dinner the last two nights (I did burn the potatoes, but that's not the point).  The biggest issues I have are with fatigue and that darn nausea.  The phenergan takes care of the nausea, but makes me tired so I have been trying to avoid taking that.  I've been eating more, and food tastes about 90% normal.  The fatigue is there basically all the time.  I have found that forcing myself to get up of the couch and do things helps a lot. 

 

I had an appointment with Dr. Stephens today.  All my levels are in normal range!!!!  ALL OF THEM!!!  White count is still rising, hemoglobin and platelets are normal.  I can't explain how happy it made me to hear that news.  When I sit back and think about everything that my body has been through over the last nine months, I'm so grateful that I have been recovering so quickly after such an aggressive treatment.  Dr. Stephens told me that I am doing "phenomenal" and progressing faster than most.  Considering that just three weeks ago I honestly felt like I was dying (or at least thought that what I was feeling was what it probably felt like to die), this is music to my ears!!! 

 

Dr. Stephens examined me, feeling around on my neck and underarms.  He didn't feel anything weird or abnormal for once.  There is one spot on my neck that we can't tell if it's scar tissue from the biopsy surgery or if it is still a swollen lymph node.  However, he finds it hard to believe that it could still be a lymph node after just having such high doses of chemo.  But, we won't know for sure until my next PET scan, which was scheduled for November 7.  I also had my port flushed today.  We discovered that my port is not flipped as the nurses at IU thought, so that's good.  We are going to leave the port in until after my next scan, just in case.  And, unless I have an issue, I don't have to see Dr. Stephens again until November!! 

This was hanging in Dr. Stephens office today. 

 I've been thinking a lot lately about all of this and just cancer in general.  All of my thoughts come to this:  Cancer is some scary, scary stuff.  Cancer can kill you.  When I was first told I had cancer, it didn't really sink in...I didn't really process what that meant.  Initially, I just went through the motions.  The severity of it all never really sunk in until May when my scan didn't come back clear after having just completed six months and twelve treatments of chemo.  That's when I realized how serious this cancer stuff was.  I mean, after all, I have the "good cancer," and if I have that and the chemo didn't get rid of it what was going to happen to me?  And now, after having completed the stem cell transplant and enduring all that it has to offer, I'm thankful and scared at the same time. Thankful that the treatment exists, that the research and science was there when I needed it.  Scared that it didn't work.  I will be scared probably for the rest of my life, even if it did work. 

 

One thing that helps me stay focused and positive even on the hardest days is my family.  Especially my children.  While I was in Indy, my mom had them make me a memory jar.  The jar contains memories that they have of me, and they created them all on their own.  They gave it to me when I got home, and let me be honest.  I cried like a baby!  I have never received such a meaningful gift.  So when I am having a bad day, I get the memories out of that jar and read them again.  And every time my heart just fills with joy.  I never knew how much of an impact I had on my girls.  I definitely didn't know what activities or things that we have done have meant the most.  But now I do.  And I will do everything I can to make sure they have more memories for that jar. 

Emily made this for the front of the jar.  Words she came up with on her own :)

 

 

 

 

 



Maybe I Really Do Have Superhero Powers...

 

OK.  I just read my last post, and I had to chuckle.  I explained how it would be a few weeks before my white count was in normal range, and how recovery was going to be a long process.  I didn't just make this stuff up.  This is what I was told by every nurse and every doctor I encountered during my transplant.  I was told that upon release I would need to have labs done twice a week, and as my numbers climbed that would be lowered to once per week until eventually I wouldn't have to do it anymore.  I was told recovery would take 2-3 months, and that it would take a number of weeks for the side effects of the chemo to subside.  My first follow-up appointment with Dr. Stephens was scheduled for this past Monday. 

 

So, Monday we went to see Dr. Stephens.  I wore my mask as instructed.  I was told I would need to wear that awful thing anytime I was out in public for about two weeks or so, until my white count went up a bit.  Honestly, I expected my labs to be better, but nothing significant.  After all, it was just Friday that my white count was 1.7 and had been going up about .4 every day prior.  Before the transplant my white count was 10.  Normal range is 4-10.  So, I was expecting a 2.5 result.  Uh.  I was off.  Way off.  Dr. Stephens left the room to go check on my labs.  He comes back in sometime later and says, "Give me that mask."  So I did.  And he threw it in the trash.  He had a huge smile on his face and was kind of at a loss for words.  He looked at us and told us that the reason he was gone so long was because he had the lady in the lab run my results twice, because he couldn't believe what he saw.  When the second run said the same thing as the first, he was shocked.  My white count was 6.0!!!!!  Already in normal range!!  All my other counts were either normal or very close to normal!!  Dr. Stephens told me I didn't need to come back for two weeks.  He told me that given my counts were so good, I should notice a big change in how I was feeling by this weekend, and said my appetite should be back and that I should also expect to be able to taste food normally again within a week.  He said he expected me to still experience fatigue, and to expect periods of energy bursts followed by fatigue.  OK!!  I'll take it!

 

Fast forward to today.  One week at home, four days since I saw Dr. Stephens.  What a difference a week makes!!  Last week I was hallucinating and wondered if how I was feeling was what dying felt like.  Today, I honestly feel really good.  The chemo side effects (mucousitis) are subsiding.  I haven't taken phenegren in two days.  Wednesday I was able to eat lunch for the first time in three weeks.  I actually want to talk to people.  I'm sleeping great at night.  I've been able to get up with the girls and get them ready for school everyday.   I've done dishes the last two nights, and some laundry.  Progress, progress, progress!!!!!   Jeremy told me that he can tell a difference in my skin color, and he says I seem to have more energy than before the transplant.  We are kind of in shock over all this progress.  We were prepared for months of downtime for me. 

 

I really think that I may be back to work part-time within three more weeks.  Seems crazy, and maybe it is, but if I keep getting better at this pace it will happen.  And I couldn't be happier about this progress!!  I told Reagan that they had to collect my cells so they could put Superhero powers in them before they gave them back to me.  Little did I know when I said that that it might just be true!!

 

 

 



Stem Cell Transplant Day 19: I'm Home!!!!!!!!!!!!

 

I'm home!  I was discharged from the hospital yesterday about noon!!  Was I shocked when the Dr. told me Thursday afternoon that I could go home Friday?  Heck yes I was!!  When I asked when he was going to let me go home, I honestly expected him to say Monday.  So, when he said "tomorrow" I was shocked.  My sister-in-law was sitting with me when he told me, and I think she may have been even more excited than I was!!  I am so glad to be home.  Eighteen days in the hospital is a long, long time. 

  

I feel that I need to enlighten everyone on what happened during my last few days in the hospital.  It was not smooth sailing.  Not even close.  Last Saturday our good friends came up to visit, and when they were there, I was good.  But later in the evening, things went south pretty fast.  Saturday was day +5 (meaning five days post transplant), and 11 days after starting six strait days of high dose chemotherapy, so the crappiness that ensued was to be expected.  That evening I started getting sick, and so did the beginning of extreme abdominal pain.  Sunday was more of the same, only worse.  The mucousitis caused by the chemo was the culprit for all of this sickness and pain.  

Seriously.  This was my television.  And it didn't work half the time. 
 

I can't remember if it was Saturday evening or Sunday morning when they started the pain medication.  In any event, they were giving me dilaudid every four hours and it was helping.  Eventually I was needing it every three hours, so the decision was made to give me a pain pump so I could control the medication.  This was the beginning of craziness that I never, ever, ever, ever, ever want to experience again.  I will spare the details of the dosage amounts, but I am certain I was receiving way more than I should have been.  Then, at some point Monday or Tuesday the decision was made to switch to Fentanyl and to also give me Ativan.  Now, this was a problem for me because I had adamantly requested to not have Ativan.  I don't like the way it makes me feel and I just didn't want to deal with that.  But, the nurse insisted that it would help, and that she would give me half a normal dose and that if it didn't work to my liking I wouldn't have to do it again.  So, I caved.  Boy oh boy do I regret that decision.

What started happening was so scary.  I started hallucinating.  I was talking to people who weren't there.  I was seeing people who weren't there.  I was sending Jeremy strange text messages about our "new friends".  He tells me that at one point I told him to get the nurse and that she was in my bathroom.  He told me she wasn't, and even opened the door to prove it to me, but I insisted I saw here walk in there.  I would close my eyes for a few minutes and then sit up and start making incoherent statements.  I couldn't sleep at all Tuesday night because of the vivid images I was seeing and experiencing when I closed my eyes.  I was terrified.  Wednesday I told them to take me off all the pain meds.  They did and gradually things improved.  Wednesday night I was still seeing vivid images, but not as often.  Thursday was much better.  It was an awful, terrifying experience.  Jeremy tells me after seeing how I reacted that I would never make a good heroin addict.  At least I know that in advance.

 

They determine when to discharge based on a lot of factors, but the main factor is your blood counts, specifically focusing on the white count.  Mine had been gradually going up for a few days after completely bottoming out, exactly as it was supposed too.  My neutrophil count was a few hundred lower than they wanted it to be, but the doctor decided to let me come home anyway.  Thank goodness!! 

Me with my blood board.  Most exciting thing that happened every day was
seeing what numbers would be written on this board!

So, now I just have to be super careful to not get sick.  It will still be a few weeks before my white count is in a good range, so until then there will be lots and lots of handwashing taking place around here.  How do I feel?  Very, very fatigued.  I still have no appetite and food and drinks taste gross.  I still have digestive issues.  I have to be very careful to not get dehydrated, but this is proving tricky since I don't want to drink anything because it tastes so awful.  However, last night is the first solid food I have eaten in almost two weeks.  I didn't eat a lot but I did eat so that was a plus.  I had a shake this morning, couldn't do lunch, but did eat a little dinner tonight.  Every day is going to be a little bit better than the day before.  Hopefully soon I can eat and drink normal.  Until then I will just do what I can, sleep when I need too.  I will do my best to keep you all posted.   

 

Oh.  One more thing.  Just so you know, when they remove your central line, they don't numb it or anything.  They just pull it out.  Yikes!

 

Bald again.  This time, I don't care.  It started coming out in clumps and was everywhere. 
When I woke up and there was  hair all over my pillow, in piles, I was done.  The tech
shaved my head that morning.  It's just hair.  I know first hand it will grow back. 



Stem Cell Transplant Day 13

Or day +6 as they call it in here


I have been here 13 days so far.  I'm six days out from the transplant.  I really don't know what to say about what this has been like, other than awful.  I told Jeremy the other night that I sure am glad I got the "good cancer."  Can not even imagine what having the "bad cancer" is like.  I've learned that just because a cancer is curable doesn't mean the road to a cure is easy.  At all.  This is by far the hardest thing I have ever done, both physically and mentally. 

As the days go on, the worse I feel.  The more nausea and vomiting I have.  The more stomach cramps that don't ever stop.  The mucositis (yeah, it's terrible) gets worse.  Last night I just couldn't deal anymore so I finally got some dilaudid.  Hallelujah for pain meds!!  It knocks the throat and stomach pain out completely, making this a little more tolerable.  I sleep a lot.  I have never been this fatigued in my life.  It's crazy how just walking to the bathroom leaves me weak.  This will improve as my counts go up, but geez.  My appetite is pretty much non-existent.  I still drink my shake in the morning but that's about all I can manage to get down.  This morning I got sick after I drank it and the nurse said that chemo can cause lactose intolerance so I should probably stop the shake.  They don't have almond or soy milk here so I guess I will have to not drink it.  Jeremy went to the grocery store and bought me some peaches.  Hopefully those work.    

My white count has completely bottomed out, just as it is supposed too.  Today, my hemoglobin is 9.6 and my platelets are 24.  The doctor says he expects that if I will need a blood transfusion that will happen tomorrow or Tuesday as my counts continue to drop.  He told me that the misery that I feel is normal misery and is to be expected.  He said it's good that I feel as bad as I do because that means the chemo is doing its job. 

And my hair.  Today it has decided to fall out.  I already talked to the nurse about shaving it later.  It's coming out in handfuls so I might as well get rid of it.  The first time my hair fell out, I was really freaked out and emotional.  This time I really don't care.  It is what it is.  And I know it will grow back. 

One reason it has taken me so long to update this blog is because I have nothing positive to say.  But, I have been getting a lot of messages asking how its going so I figured I would just put it on here.  Hopefully in the next two to three days things will start getting better.  At least that's what they tell me.