Moving On

It has now been over 2 months since coming out of the hospital from the transplant, and I'm doing well!  I feel very grateful to have made it this far without any major setbacks and feeling as well as I do.  For a few weeks there (mostly the two weeks pre-transplant to about two weeks post) I was pretty down about the whole thing.  Of course, part of the problem was feeling poorly quite often, but the other part was having read the transplant handbook!  It really had me freaked out!  The book had a lot of personal accounts and some horror stories probably meant to prepare me for the worst.  What it ended up doing was making me feel like I would never feel better!  How depressing!

My hair is coming back!

I am happy to say that I am feeling MUCH better.  My life is resuming, though there are some differences I imagine will be permanent.  Physically I still tire very easily, which can be difficult to "plan for" like the handbook says... I didn't know that a trip to Philadelphia would wipe me out for three full days when I came back!  I wish I could have planned for that!  Another not-so-fun difference: premature menopause.  Yeah, gotta love the hot flashes!  I still have a hard time thinking clearly or holding thoughts for long- it's hard to explain.  For example:  I used to be able to think of things through the day that I need on my shopping list and then when I finally got around to writing them down, they'd all come back to me.  I can't do it anymore!  If I don't immediately write it down it's gone.  And that sort of thing happens in all sorts of situations; teaching preschool, speaking in front of people, trying to think of words  in everyday conversation, etc.  I guess I lose my train of thought easily.  I'm still hoping my mind will come back- and there's still time, it's only been a short while after chemo.

Yesterday I went to have my "3 month" PET/CT scans (officially the 3 month mark is May 7- three months since the last day of chemo on Feb. 7).  I will be going in next week to see the result of those scans.  This close to the transplant they should be clear.  I'm not worried.  It's the future scans I worry about, and I do worry.  It's not something I ever really thought about before this second go round, or if I did, it passed quickly.  Must have been the perceived invincibility of youth.  Now, it's always there, and when I think about the possibility of cancer coming back it scares me, but I let it motivate me to push harder in everyday life.  So what if I'm tired?  I still have two children and a husband that won't ever get back this time in their lives.  And my life, probably being shorter after cancer and chemo twice, needs to be as full as I can possibly make it.  I am trying to enjoy my family as much as I can and trying not to sweat the small stuff.   I read the following quote on Facebook and it struck me:

Always we hope someone else has the answer. Some other place will be better, some other time it will all turn out well. This is it. No one else has the answer. No other place will be better, and it has already turned out. At the centre of your being you have the answer; you know who you are and you know what you want.
~ Lao Tzu


This is it, it has already turned out.  One can choose to interpret the quote with optimism or pessimism, I choose optimism.  Life is good now, and it has already turned out well.  I look forward to the future, but want to pay more attention to today. After all, it's the choices we make today that make tomorrow.

I am grateful to everyone that has followed my journey and kept up with my blog.  Your comments have lifted my spirits when I've needed it most.  I made it through this cancer journey only with the help of family, friends, and faith.      


I wanted to write one last post to let everyone know that I am "moving on."  I may not be done with cancer and its lasting effects, but I am done focusing on it, and therefore done with this blog.  I have started a new one that will be my family blog and will be where I record my progress with future scans and doctor visits, along with the other events of my life.  If you'd like to follow, please come along!  The address is WingerLife.blogspot.com.

4 Weeks Home!

    I've been four weeks home now after the transplant and things are going very well!  My recovery is  better than expected so far.  I'm steadily regaining my energy and I feel like my body function is almost normal.  It's hard to explain how it's felt a little off since coming home.  I've had a great appetite but I occasionally feel queasy.  My mind is still fuzzy sometimes, but improving.  Of course I am tired, and that comes and goes.  I have started doing the grocery shopping again and even did some couponing this week!   By the way, I LOVE couponing and I have missed it!  My family is rolling their eyes at me right now... :)  Overall, things are really looking up.  The fact that Spring is here already (yet another perk to living on the east coast), has helped me too!  It feels like my body is coming out of a harsh winter at the same time as flowers are blooming and trees are leafing out. 

   

    I have a little story that goes along with this pic but first, I have to let everyone know, I love my husband, and he has been so good to me on my cancer journey (should I be calling it a "recovery" journey now??).  He has always made me feel loved and beautiful, even when I had no makeup on, my face was puffy from chemo, and I had a gross tube hanging out of my chest!  And it's a good thing I love him and I don't get my feelings hurt easily... The other day we were having a nice conversation sitting on the couch and I was without a hat or scarf (as I often am around the house) when Adam said to me, "You know what I want to call you?  Pharaoh, because of your bald head and your painted on eyes."  At first I feigned offended, but couldn't help laughing!  I guess it's just another one of his many affectionate nicknames for me!  Though I am a little concerned about the masculinity of this nickname...

    Happily, I will not be able to keep the name Pharaoh much longer- my hair is starting to grow!!  I have little tiny white hairs growing out of my eyelids and my head is starting to feel fuzzy!  I had to shave off the little hairs on my head, and now it's coming in dark!  So excited.  I keep thinking back to how long it took to grow it out at age 16- it took 3 years until it was past my shoulders again, and that was letting it grow without any haircuts (yeah, I looked REALLY bad for the first few months... my nickname then was "Helmet-head").   The timing is perfect though, the weather is just starting to get warm (forecast to be 69 degrees tomorrow) and I am having a hard time wearing tight beanies and scarves in the heat.  I can't wait until I have just enough hair that I can wear a baseball cap and have people think I meant to have such short hair (I get some weird looks when I go out).  

    

Made it Through! Transplant Recap and What's Ahead

   
    I have been home for two weeks and two days and I'm feeling great!  It's so nice to be home and with my family again, after 16 days away.  It feels like I missed the whole month of February!  I haven't wanted to post though, mostly because I haven't wanted to go back and relive the transplant while I'm trying to go back to a 'normal' life.  Not that it was too terrible, because it wasn't, but I am SO READY to put it all behind me and move on!  But first, the update...

   The hospital stay and actual chemo part of the transplant lasted 6 days and 5 nights.  I received a treatment called BEAM, it's four different types of drugs and is commonly used before a transplant to kill off all bone marrow and (hopefully) any remaining cancer cells in the body.  The last drug I was given was over 1/2 hour and was the one that causes the major side-effects.  I had to chew on ice from a 1/2 hour before administration of the chemo to 1 hour after.  The thinking behind this is that the ice constricts the blood vessels in the mouth so that less chemo goes through that area which would keep the mouth sores to a minimum.  I ate a full bin of ice- one of those nice pink puke-buckets full :)!!   I am SO glad I did, because I only ended up getting one mouth sore, and it was painful enough!  But more on that later...  

   The actual hospital stay was not bad.  I didn't get too sick, I was able to read a book, paint my toes,  talk on the phone, watch lots of TV (American Idol and the Superbowl were my faves), and ride the stationary bicycle every day.  It was still completely boring, but hey, I wasn't bored AND feeling crappy, so I say it wasn't too bad!  After chewing the bucket full of ice I was discharged from the hospital to head over to the new Cancer Center a block away.  

   The nurses discharging me were really funny- they acted overly concerned for my safety (I'm sure it was more a liability thing)- they wanted to wheel me out, have me wait for transportation, and be dropped off at the Center's doors to be wheeled up to the Day Room where I'd be staying for the final 10 or so days of the transplant.  I told them I'd just walk, with Adam by my side, and they were horrified- what if I tripped?!!  I ended up agreeing to have Adam pull the car up to the hospital if I could be allowed to walk myself to the front doors... but, since Adam had parked at the Center, we just walked over anyway.  I think the nurses knew what I was going to do, but they kindly looked the other way!  

    Once I made it to the Day Room I was put into a secluded room of my own where I'd be staying from about 8:30-5:00 each day for the following ten days.  The Day Room is a huge room where there are about 15 nurses working with anywhere from 1 to 40 patients sitting in chairs around the room to receive treatments; chemo, blood, platelets, shots, etc.  I was in one of 5 rooms off to the side, specifically reserved for transplant patients to keep us away from the "outsiders."  Adam and I were given a key to an apartment owned by the hospital that we'd stay in at night and we were instructed on what would happen over the next ten days.  It took forever to go over everything, though we'd heard it all before in the required transplant class we had to take.  

   We went to the apartment that night and got settled in.  It was a large one bedroom place very simply furnished with two TVs and cable.  And for my first meal outside the hospital: Dominos pizza!  It was heavenly!  There wasn't much to do in the evenings after spending the day at the Center.  Adam and I watched TV (Adam usually worked on his computer), ate dinner, talked to the kids on the phone, and went to bed.  Bed was the worst part... They had two tiny twin beds that were hard as rocks and not long enough for Adam.  Because of pain caused by my port on my right chest I could only sleep on my left side and after two nights of sleeping on a rock in one position... I wasn't getting much sleep.  I ended up sleeping on the couch the rest of my stay because it was more comfortable than those horrible beds!   By the end of our stay we were ready to say goodbye to the place!

  The 2nd day in the Day Room was called day Zero- the day of the actual stem-cell transplant.  I'd already had the chemo to kill everything off (it would have killed ME, without the stem-cells- pretty amazing stuff) and now I'd be getting my own stem cells back.  For something that was technically saving my life, it was pretty uneventful.  I sat there with the tubes hooked into my port, and the doctor came in three different times to hang three bags of cells to drip into my body.  It took about 40 minutes and I felt a slight tickle in my throat (the preservative in the cells), I got flushed for a couple minutes, and I ate mints to keep from tasting the bitterness of the preservative, all while reading a book.  Then it was over!  After that it was just a matter of days until the cells started reproducing and my blood counts went up.   The rest of the 10 day stay would be sitting in that tiny little room receiving fluids and being observed by the nurses.  

   My little room was pretty boring- it had a chair, a small TV, and a sink.  That's about it.  Ten LONG days in there... Oh yeah, it also had a clock- I will remember that clock forever!  I don't know how many times I stared at that thing thinking to myself, "I should get up," and I'd look again at the clock and notice thirty minutes had passed and I was still staring and thinking the same thing...  I had about three days where all that I did was sleep and stare off into space, periodically checking the clock to see how much time had passed.  And the craziest part about it is that it felt like it was passing quickly!  My mind just wouldn't work for those three days- I was in a haze that's indescribable.  I got to the point where I thought if it was worse the next day I'd have to be in a wheelchair and Adam would have to help me get dressed!  But the next day was better, and I started being a person again after that.  

   Along with those three bad days I also had the one mouth sore I had mentioned.  It's true what I'd been told- they were the worst part!  The sore popped up about day 3 (after day Zero) and it was in the back of my throat where all that ice I'd chewed hadn't reached!  By the next day I could not swallow without wincing.  I was prescribed pain killers and started planning my meals around those pills- I had to take one before meal time just to be able to swallow my soup!  And that's all I ate for a few days- soup.   The sore was painful for the following 6 days, until about day 9- the day before I went home.  My mouth is still not back to normal, my gums feel rough and the top of my tongue doesn't have much taste ability, but it's all supposed to go back to normal eventually.  Maybe when my hair starts growing again my mouth will also renew those damaged parts?  

    I did end up spiking a fever on day 7.  It seems pretty commonplace that patients do, though the guy who left right before me didn't get a fever or any mouth sores so I'd had my hopes up.  It wasn't a big deal though- my temp went up to 101.5 and because the nurses can't know for sure what caused it they started heavy duty IV antibiotics.  I had to be on antibiotics around the clock so I was hooked up to a cute little fanny pack I had to wear at night- that was fun!  The antibiotic cleared out my system so I also came down with some crappy diarrhea... ha ha!  The doc would have sent me home on day 9 had I not had this secondary complication.  He ended up taking me off the antibiotic and giving me a nice little immodium pill that worked wonders.  And on day 10, I was outta there!

   According to the nurses my stay there was pretty smooth.  They chalked a lot of it up to my youth and my general good health.  I have to also chalk equal parts up to faith, attitude, and the support of friends and family.  Though it wasn't fun, there were bright spots during those 16 days.  I had friends come visit me, made new friends in the nurses and two other transplant patients there at the same time, and was able to spend every night with my husband.  

    I was finally discharged to head home around 5PM on the last day of my stay- I had expected to be out earlier and had told Mykee that I'd be home when she woke up from her afternoon nap, but now that wasn't going to happen.  When I walked in the door I was so excited to see my kids I couldn't decide which one to go to first- Evan was sitting at the table eating and Mykelle was in the bedroom.  Since Evan could see me I went directly to him- he acted semi-excited and said, "Hi Mom, I lub you," then went back to eating.  What a cute little 2-year-old!  So I went to find Mykelle and she came running out of her room crying hysterically.  It was incredibly heartbreaking- she latched onto me and cried uncontrollably for about five minutes saying, "I miss my Mommy, I want my Mommy."  I just kept telling her I was home and so happy to see her and that I loved her.  As quickly as the hysteria came, it was gone!   She started smiling and laughing and telling me stories.  Her and Evan wanted to sit right on top of me the first couple of days I was home, and hated it when I went anywhere without them (like the bedroom or bathroom).  It was so good to be home!

    Of course, it turned out the kids had the beginnings of a cold, and I promptly caught it!  Lucky for me it was not very strong, but the doctors were still angry with me for not taking more precautions- though how I was supposed to keep from getting a cold that I didn't even know the kids had until the next day is beyond me!  It did make those first few days at home a little difficult, but hey, I was home!  And I had my Mother-in-Law there to help me!  

    Adam's mom, Anne, had been at the house watching the kids while Adam was with me every day.  She was so nice to come out and help, and the kids loved spending time with Nanna.  She stayed another  week after I came home, which was wonderful!  She helped me around the house with laundry and cleaning, let me sleep in while she got the kids up, entertained the kids when I was too tired, did the grocery shopping and most of the cooking, and kept me company.  I'm so lucky to have such a great MIL!  I did feel bad though when Mykelle said to her, "I'm ready for you to go home now and my Mommy to stay here."  Fortunately Anne was very understanding and didn't get her feelings hurt!  

   It's now been about a week since Anne left, and things are going well!  I went to the doctor on Friday- my blood levels are looking good and I don't have to go back for 2 MONTHS!  Yay!  In two months I'll have my scans done again and assuming they're clear I'll be going back every 3 months for the first year, then 6 months, then yearly.  Sounds good huh?  


  I am still on a restricted diet (low microbial) and the docs want me to be careful about being around too many people.  I am not allowed to clean the house for the first 3 months (lucky me!).  I have to take pills every day for about 6 months to help my immune system.  Supposedly I'm not to swim in any lakes, oceans, or pools this summer, but the docs said I could probably bend that rule a little, but others they weren't so nice about.  Flu season is of course a big worry, so I've been told I need to wear a mask when I'm in busy public places and to stay away from places like church for a while longer.  I should be back to normal blood levels by six months post-transplant, though I've been told some of the cognitive problems and fatigue can last much longer and sometimes be permanent.  I still have to call the hospital with any temperature over 100.5 and I could easily be readmitted to the hospital (especially during the first three months). It sounds intimidating when I put it all down in one paragraph like this, but it really isn't too bad right now.  I have energy, I just have to pace myself and take a nap here and there.  And of course I have Adam to help.  I'm grateful he has such an awesome job that allows him to be home at a great time (4:30) and gives him a flexible schedule.  

Day 2, of 16-20...

    So I know I went a month without writing, and now we get two posts in two days.  There are a couple of reasons for that, the first, I would like to write about more of what I'm going through for those that have asked for more detail.  Second, I actually have energy today and haven't yet felt sick from the chemo- I worry that once that starts I'll rather lay in bed or my posts would probably be depressing!  Though I have felt dizzy, it could be from the chemo, the antiemetics (anti-nausea drip),  or one of the 10 pills I took today!  Probably a combination huh?  


    I inserted a picture of my bald head, I don't think I've put one up yet on the blog?  I know there will be a lot of kind thoughts and comments from you good people out there, but let's be honest.  My head is creepily white, and HUGE!  Not to mention the "hair line" I have.  My giant head "looks like an orange on a toothpick!" :)  It definitely helps to wear scarves and hats!  I have been asked if it's hard to shave my own head.  Truth is, no!  Just a little shaving cream while I'm in the shower and take the razor and go for it- with the grain of course.  Then I use my hands to feel where I miss.  Best part is, I only have to do it once every couple of weeks or  so.  Only 3-6 months until it starts growing back...

    Yes, the next picture is odd, but I want to show you what's going on up close!  My eyebrows are almost completely penciled in (on the bright side, I can get any shape I want!) and my eyelashes are just about gone... on the left eye I have three bottom lashes left!  It's to the point where I wonder what's better, 3, or none??  I can't bring myself to pull them though... They'll fall out soon enough!  

    One goal I've had through this all has been to do my makeup every day, no matter how crappy I may feel.  So far, I've kept the goal!  True, it's usually just a quick job, but I really feel better afterward.  I look pretty washed out (and sicker) without makeup on.  One picture you will never see on the blog is me with zero makeup and no hat... I look way too much like my brothers!!   Though they are very good-looking men, I would rather not be one!  

Jake, Zack, Mike, Jesse
The Bassett Boys

    The above picture is of my brothers and my dad after they all shaved their hair short to show their love and support for me!  Told you they were handsome right?  I didn't know they were doing this until I received a text with the picture attached- cool huh?  I thought it was great!  I just hope their wives (and Zack's girlfriend) didn't mind too much- after all, their women have to look at them every day!  


   About my hospital stay so far:  It hasn't been too bad!  I have been getting chemo for a few hours (since last night) and I haven't felt too many side-effects.  Right now I feel pretty good- which makes me dread the side effects I know are coming...  I've had a few people ask what those side effects are, and I usually try to stay away from the real down and dirty part of the chemo experience- it just seems like most of you wouldn't want to hear all that, and it can be a downer.  So if anyone wants to avoid it, just skip over this last part of my post!


    I should start to experience over the next few days nausea, vomiting, and diarrhea, though the vomiting is usually controlled well with the antiemetics.  I'm not too concerned about this part, it's been part of the treatment already and hasn't gone too far out of control.  So far with the help of these drugs I have only vomited once!  I think that's pretty good for the amount of chemo I've been given.  


    From what I've heard and been warned about, the most painful part is the mouth and throat sores that come up four to eight days after the last day of high-dose chemo.  They can be so painful that patients stop eating and can need feeding tubes!  The sores are caused by the chemo attacking all fast growing cells (hair, skin, mouth throat and gut lining).  Not only are they painful, they can cause infection, which I have to be EXTREMELY careful about after the transplant.  My immune system will be gone, and I will have no white blood cells to fight off any bugs.   I have been taught good oral care is essential to help prevent mouth sores and control them once I get them.  Even though I don't have them yet, I rinse with a special rinse four times a day, brush with an extra-soft toothbrush, and use a mild toothpaste (children's strawberry, yum!).


    Other fun things that happen occasionally, but not often, are bladder irritation, liver, lung, and heart damage (most of which is mild and reversible).  Another occasional side effect is confusion- which I have already experienced with previous chemos, but hope it doesn't get too bad this time (also reversible).  


    The biggest worry and most common event are the infections.  I will be taking an anti-viral, antibiotic, and anti-fungal to help prevent them all, but it sounds like it's pretty much accepted that all patients will get some form of infection during their stay or especially during the first 3-6 months post-transplant.  I am told to watch for any fever of 100.5 or greater and call immediately if it happens.  Odds are high that I will be readmitted to the hospital at some point over the next year- I think I read 50% of patients will have a return trip.  I'm sure that would be depressing, after going home to have to come right back!  We can hope and pray that I will be in the 50% of patients who don't have return visits!  


    There are of course a lot more potential side effects, and more long-term side effects, but they aren't as common as the ones I listed above, so let's not look at those!  If you want to know more it's easy enough to Google it!  I think I'll always have a worry about getting one of these side effects or the possibility of relapse but I know that life is still beautiful, and it needs to be enjoyed.  

Remission is the Word!

   It's true!  The doctors have told me my scans came back clear and I am officially in remission!   What a blessing and a relief.   Cancer has been defeated... again!  I know that many prayers and fasts have been answered, and I am grateful to all of you who've helped me reach this point in the fight.  There is still a long road ahead, but I see the light at the end of the tunnel, and am so thankful to have the chance to LIVE.

Happy Family!

Mykee and Evan couldn't wait to show off their room and stuff to the grandparents!

   It has been a long time since I last wrote- I apologize to those who check the blog regularly!  I never said I was a blogger!  I have continued to have an average of four appointments a week, not all in Hackensack but all of them cancer related.  I had the last 3 day chemo session(ICE #3) and made it through without any big problems.  The day after I got out of the hospital my parents came into town!  We had a ton of fun- we ate REALLY well (too well, I think I gained ten pounds), went to a museum, saw a lot of movies, went shopping, the kids and the men went swimming, and we all had a good time hanging out together.  Mom and Dad also helped with watching the kids during all of the crazy appointments that week.  It was so nice to have them both here, but after they left it made me miss them even more!

Swimming at the hotel pool

Grandma and Grandpa playing around

   The next and last big step in the road to cancer recovery is the stem-cell transplant.  I am at this moment sitting in my lovely hospital room awaiting the high-dose chemo scheduled to start at 8.  It will be six days of intense chemo followed by about 1 hour of the actual transplant- when they give me back my stem-cells through my port.  Then I'll be discharged to the hospital apartments just down the road.  I will be coming back to the hospital daily for 8 hours or so each day for observation, blood, platelets, and fluids.  Adam will have to stay with me every night to take care of me and drive me to and from the hospital.  The side-effects of the chemo should be rough, so it will be nice to have Adam's love and care.  As soon as my white blood cells reach high enough levels I should be given the go-ahead to return home.

Showing off my Double-Lumen Large Bore Catheter.
It's how I'm given chemo and how the stem cells will be given back to me.  

I have to have the catheter flushed every 5-6 days and have the dressing changed.
It's a pain because I have to go in to the clinic every time, and the wait time is always over an hour!
Plus a have a GIGANTIC tube hanging out of my chest, so that part isn't too fun either :)

   We are fortunate to have Adam's mother, Anne, coming to stay with Mykelle and Evan while I am in the hospital.  It's going to feel long, being away from home and my kids for nearly three weeks, but I'm happy to have Anne's help so I don't have to worry as much.  

Scary Face!

  

Stem Cell Removal 1/4-5

    It's Wednesday and I've been to the hospital every day this week, with plans to go again tomorrow.  I look forward to the day I see that place in the rearview mirror for good!

   

    Monday was a CBC- after packing a backpack full of things to do (just in case there was a repeat of the monster day of the last transfusion), I found out my hemoglobin was at 7.7 (not critical, I guess) and my white cells were up very high.  So I was clear to go home!  It was really nice to have a short appointment.   It was kind of funny though that all the nurses and doctors knew about my terrible experience on Thursday with the blood transfusion.  They were all apologetic and overly kind.  

   Tuesday was the scheduled stem-cell removal.  I had plans to be driven by Adam at 12:30, until I received a phone call asking me to go in as soon as possible for a chest x-ray to determine the placement of the catheter.  These appointments and last-minute changes are making it hard on my babysitters!  I made it in early for the x-ray, which made me late for the stem cell appointment.  It worked out though, I had to wait there for about 2 hours anyway!  The most frustrating part of this was that the nurse never even looked at the x-ray! I was 1/2 way through the collection when the nurse asked me why I needed the x-ray.  She said I didn't need it because she could look at the surgical notes to see the catheter was in the right place.  I guess the x-ray was just to throw in an extra expense for my insurance to cover. 

    The actual extraction of stem-cells is amazing.  Over the course of 4 hours the machine (in the pic) runs my entire body's volume of blood through it 3 times!  The blood goes out of one tube of the catheter, into the machine where it is "washed," the stem cells are extracted (by weight), and sent into a little collection bag hanging above me.  The rest of the blood is turned to my body through the second tube in my chest.  By the end I was a little tired and bored after sitting in a chair for a few hours, but that's about it!  

    I was told to come back in the morning to see if I needed blood (sometimes the machine lowers hemoglobin counts) and if I didn't then I could go directly on the machine again.   I would find out then if I had reached the collection goal of 5 million cells.  Either way, I'd have to do day 2 of potential 5 just to make sure there was a back-up bag. 

   This morning I arrived and waited only 20 minutes before finding out my hemoglobin was fine (7.9) and not only had I reached my goal of 5, but had doubled it with 10 million cells!  Yay!  I was so excited not to have to come in for 5 days in a row!  I was also told my white blood cells were up to 100, 000- nurses kept asking me if I was in pain!  The Neupogen shots do cause a lot of bone pain but it's been gone for me during the past two days.  Maybe my body gets used to it after a while?  I still had to be hooked up for collection today for the back-up, but it wasn't too bad.   

   I go in again in the morning to see if my hemoglobin is high enough not to get blood (it dropped again by the end of collection to 6.3).  Afterward, I am hoping to be free of doctor's visits until Monday morning when I go in for another CBC and to find out when I have the next chemo session, which will likely start next Wednesday.  If all goes well I could be out on the 14th to recoup for 2 weeks with bi-weekly appointments for blood counts.  During the second week I'll be scheduled another PET/CT scan for re-staging of the disease.  Assuming the tests show I'm in remission, I'll go in for the long stem cell transplant around the 28-31st of January.  Best case scenario: over with treatment around Valentine's Day!  Then of course I have to deal with recovery... but I can DO that!  I just want to hear the word "Remission!"  

This pic's just for the fun of it! :)

Blood Transfusion 12/30

Christmas Day at the church house

     I did make it out of the hospital on Christmas day, a little after noon.  We had skipped the Christmas activities, due to my being in the hospital, but still wanted to do something nice on Christmas day.  We decided to attend a dinner that our Bishop and his wife put on every year at the church house for families away from "home."  I was a little worried about how I'd be feeling but Adam told me just to sit at a table and let him take care of feeding me and keeping an eye on Mykelle and Evan.  I do like being taken care of, so we went!  It turned out to be a very nice time; lots of great company and the food was wonderful, and there was plenty of it.  After three days of eating nothing but hospital protein shakes, I was able to pig out on turkey, mashed potatoes and gravy, and delicious homemade wheat rolls (thanks Hazel!).   I'm sure I wasn't the life of the party, but it was nice to be with friends on such a special day.  The kids had a great time running around the gym with all of the other kids, and eating off of random plates found lying around.

    We ended up doing the Christmas Eve/morning routine on Monday night and Tuesday morning.  The kids had no idea we had postponed it.  We had an enjoyable Christmas Eve filled with gingerbread cookies, eggnog, and stories of our Savior's birth.  Tuesday morning was a little crazier as we opened presents and the kids wanted to play with the already opened toys instead of opening the rest of their presents.  We finally finished after a couple hours and several breaks.  It was nice to feel well for the day and enjoy the kid's excitement. 

     Since last I wrote, I've had a couple updates on the cancer front.  I had two appointments this week, Monday the 27th and Thursday the 29th.  On Monday I went in for a CBC and as a follow up after the chemo.  It was mostly uneventful except that I found out for sure that I'll be getting another session of ICE after the stem-cell removal (which is this week Tuesday-Friday.  It was expected, since the cancer is not yet in full remission.  The best part of this news to me, meant that my parents could come out to visit before the stem-cell transplant!  They had been planning on coming near the end of the transplant, but the docs recommended people who've recently flown to stay away from me at that point- since my immune system will be at its lowest.  They will be out here on the 14th, and will stay until the 22nd.  We are so excited!  Mykelle prays every night (and nap time too!) that her Grandma Roxie and Papa Mike be blessed to make it to her house.  So sweet!

    Thursday's appointment was scheduled for 10:40 in the new John Theurer Cancer Center- it's separate from the hospital now, but just across the street.  Because they are in the new building everything was very chaotic.  I did finally get in to see the doctor after 1 1/2 hours wait just for him to say, "You need a transfusion.  See you next week."  Yeah... not a big fan of how little time, effort, or care these doctors present their patients.  So I was sent to the treatment room to get a blood transfusion.  I'd never had one before, so I asked a lot of questions.  The nurse told me I needed two units of blood because my hemoglobin was at a critically low level of 6.4 (normal is 12-16).  She said she was surprised I was doing so well, that it's low enough to make one dizzy and pass out.  I told her I did have a throbbing headache, and she said it was because of the low levels of oxygen I was getting to my brain.  The heart starts pumping harder to make up for it, hence the throbbing headache!  

  Up to this point I had been content with the explanation, and was ready to stay for a couple of hours.  I was told the blood would be ready at 2, and finished by 6.   Well, that was a problem.  Mykelle's Joy School Christmas Pageant was scheduled to begin at 6:30!  And I still had to pick up a couple things at the store and then pick up my family before heading over.  When I said I couldn't stay for two units, the nurse got the doctor's ok to only give me one, but on the condition that I swear to go to the ER if I feel like fainting over the holiday weekend.  I was pacified.  

    UNTIL... 3 o'clock rolls around, and there's still no blood... 4 o'clock rolls around- no blood... At 4:25 I packed my bag and told the nurse I'd be leaving unless the blood could be started in the next five minutes (getting me out of there at 6).  Since that wasn't possible, I asked what they recommend I do after Mykelle's pageant.  I was told not to leave, by several nurses and two doctors, but if I DID leave, I'd have to come back to the ER to get the transfusion either in the middle of the night or in the morning.  I think I must have panicked the nurses because they were suddenly on the phone yelling at the blood bank (apparently there were *several* mixups with my order).  One nurse jumped up and asked me if she ran to pick it up and had it here within 10 minutes, would I stay.   I was surprised at her willingness to put herself out like that!  Of course I said I'd stay, and she was back, sweating like crazy, in about 15 minutes and I had the blood started a little after 5.  Really late, but thankfully the Joy School group had agreed to postpone until 7 so that I could be there.    The nurses kept telling me that I was too nice, that if they'd been in my position they'd be angry!  But  I had to remind them- they were not the ones at fault!  Had they been, I might not have been showing such a pleasant side :)

    I felt surprisingly well after the one unit of blood and am looking forward to the two I should receive tomorrow.  Just not looking forward to the long waits!