Day + 25   The Least Fun Roller Coaster Ride EVER! 

Hi Y’all! 

It’s day +25 and my counts are looking good!  My energy level seemed to be improving day by day last week,  but this week…. Its staying flat at 90 year old lady level.

I have gotten out much more.  I didn’t really “get out” of the car much,  but went for rides a lot and that was nice.   It helped with the cabin fever.  Rosie left for Arizonia with Fran and Dan today.  She is the flower girl in our friend Heather and Scott’s wedding.  My parents and I were so disappointed we couldn’t go,  but I need to heal and it is still way too unsafe. I am going to miss my baby.  I just got her back!   

  

I also started getting some deliveries of things I bought while in the hospital.  It’s always fun to get packages I have no recollection of buying…. Ahhhhhh……… Hospital pain killers….

 

The last few days I’ve been having issues with my legs.  It is very hard to explain the feeling. It’s as if I can feel my legs all the time, yet not in a pleasant way.  It is worse when I’m still  and even worse when I try to sleep.  Apparently,  this is not uncommon.  It is just very difficult to sleep or relax.  Baths help,  but there are only so many you can take.  I had 4 between 10PM and 5AM today. I have a large staircase I have to go up to get to my bedroom and I fear that may be part of the issue. I’m overdoing it.  But like every other weird thing that comes my way, I’m sure this will pass.   My consistent shaking has let up some.  

I find he worst part of this HSCT recovery for me is that my mind wants to do things and my body is completely unable to.  It is beyond frustrating…. But I am trying to be patient and heal… It’s not easy feeling useless and watching others around me go on as normal.   I want to help!!!

Xoxo

Colleen

PS – miss her already

  

Day Plus 21 – 3 Weeks Down

Well, it has officially been 3 weeks since my transplant and I am slowly getting stronger.  I now have the energy of a 90 year old as opposed to the 105 year old of last week.   Today,  was a big day for me.  We had to run a bunch of errands before the doctors. My mother wanted to do a dry run to the place Rosie’s class is going on a field trip (she is chaperoning… ) Then we went to put a deposit down for Rosie’s birthday party in June (I chose to go today because  Monday in April… No one would be in there… I was right). We then went to my hematologist.  We decided in Chicago that it was best for me to make an appointment in case I needed a transfusion.  As exhausted as I have been I expected to need one today,  but I didn’t!  

  

My numbers still look good:  

WBC – 8.73

Hemoglobin 10.6

Platelets – 679 (I have high platelets normally,  but this is high.  My Hematologist said we will just watch it every week.)

Way too much excitement for me.  I could go right to sleep.   Other then that I feel like I am boring everyone.  I spend most of the time in the house to avoid anyone who is sick.  So there is usually nothing to talk about.  But when I do…. I will be sure to blog it.
Xoxo

Colleen 

Day 19 – Well This is Harder Then I Thought

Hi Everyone,

I’ve taken a few blogging days off, but I figured I would fill everyone in on my week home.  First, I am so so so glad to  be home. Even if I only left my house for doctors appointments and one trip to an empty Talbots to celebrate my good blood work. 

I pride myself in being prepared.  I don’t think anything really can prepare you for the feeling of total helplessness you have when recovering from a major body overhaul like HSCT.  I’m exhausted… All the time, but barely sleep.  It’s not your run of the mill exhaustion.  It’s the  I walk up a flight of stairs and my heart rate rises over 140 bpm exhaustion.  I am literally tired from pumping blood.  I am in much less pain and with the exception of today, my stomach hasn’t given me any issues.  I still wouldn’t take it back.  Small price to pay.

Monday, my dad and I headed over for my first blood tests.  I can’t walk far, so I needed the wheelchair.  I felt bad for my dad.  He shouldn’t have to push me in a wheelchair.  It went relavily quickly and I even got my dad to pose for a selfie (what waste makeup)

  
Man, it was a long 3 days waiting for results, but they came and were pretty good for 1 week out :

WBC: 9.9 (back to normal range!!)  So don’t be afraid going out in public.  Just wash your hands a lot and try to avoid “rush hour” people traffic.


Hgb: 10.0 (little low but that’s ok for now….it should get better with time….this could be why you’re tired too)


Plt: 412 (you’re above normal again….this level can bounce around at the beginning)

 

Electrolytes/magnesium/phosphorus all look good

 

Your liver enzymes were MILDLY elevated.  This is not uncommon with all the medications you were on in the hospital and continue to be on at home. We will just monitor this for now.  AST was 34 (normal is 10-30); ALT was 54 (normal is 6-29)


Yesterday, I went and saw my neurologist.  Love her.  Love that whole office,  it is my hope to help others choose this path.  It’s a few months of bad compared to a lifetime of uncertainty and pain. After remission, that is what I want most from this journey.

Today I woke up with a swollen gland on my left side.  Immediately, I said every foul word I know. (it’s ok, I made up for it by practicing prayers with Rosie). No fever, but I know what a compromised state I am in.  My body can’t fight right now.  It’s exhausted from pumping what little blood I have around my body.  I know this gland.  It’s the drip gland.  The one that turns into a cough that will never leave.  I can’t get this.  I’m too tire to cough. I immediately email Kaitlyn who tells me to get to a doc and ask for a rapid strep test.  So,  I get dressed which not only exhausts me, but causes one of the lovely post HSCT hot flashes.  Of course, I don’t leave the house without makeup so….
  
My mom and I get  to urgent care and it’s a San Antonio holiday, so you know it will be packed.  I kid you not.  I go in gloves, mask and an economy size bottle of Lysol stuck in my purse…. Which I could barely carry.  Go in, fill out the ppw, see the doc and get a diagnosis of… Throat looks good, ears look good.  Try benedryl with the Claritin.  Oh. And no strep.  Mind you, this entire time I am a walking sauna oh mash, head scarf and plastic gloves.  Good times.  I took my benedryl and my gland is still swollen. Ugh.

 So only time will tell if I get sick…. In the meantime, maybe this benedryl will make me sleep.

Xoxo

Miss you HSCT buddies’

Day +14 – First Blood Work at Home!

   

Hi everyone! 

It’s Day + 14,  I’m home, I’m happy and everyday I  get a little bit stronger.  The exhaustion continues to surprise me.  I am not used to sitting around.  I like to be in the action.  But once I try,  the need to sit down wins.  I have not left the house since coming home.  Mixup with my stomach meds had me in a lot of pain late last week,  but that too seems to be better and little by little I am eating more flavorful foods.  

Funny,  I didn’t need a wheelchair before HSCT (although I did cave and use one at the museum) but I got an inexpensive travel wheelchair for the next couple of weeks.  It is a far walk to have blood taken or to get up to the doctors office. So I plan on retiring that once I can walk a neighborhood lap.  I personally blame a lot of this on my steroid heart.  My resting heart beat was so fast that the smallest action made it just race on.  Now that I am quickly approaching a week off of them, it is calming down.  

So all good news to report.  I plan on staying isolated for a while longer.  Hopefully these blood results will be good.  We should know in a few days!

Xoxo

Colleen

Day + 10   Sleep and Bliss

Hello Everyone,

It’s Thursday!  Day +10 and this whole journey it was the day I thought would be the earliest I could be released.  But here I am, sitting on my couch, cuddling with my little one.

Yesterday was hard.   I have no energy and to do the simplest task is pure exhaustion.  I was in so much stomach pain and my heart was still racing.  After all the excitement, I crawled in my bed, toasting Vonna with a dose of Maalox and slept.  Now, I may have gotten up and used the bathroom in the middle of the night, I don’t remember.  What I do remember is waking up and realizing I got 14 hours of sleep.  Unbelievable!  I feel better.  I was sleep deprived and running on pure adrenaline these past few days.  

Today, Operation Hibernation starts.  I plan on staying in as much as possible until my counts rise.  So I will post less frequently.  Then I can go out when there is low crowd and less people.  I am excited to start eating some fresh veggies and fruit tomorrow.  My neutorpenic diet is much less severe then it has been.  I still am sporting my low gerd diet and God Willing even that will go back to normal now that I am off the roids.  The hardest thing to get used to is the energy level.  Simple tasks exhaust me and I can’t help around the house like I want to. I’m can barely get myself a water. Anything I do requires a rest afterwards.  I feel very helpless.  But, as I feel better, we will start to walk and start to gain strength.  Then before you know it, I will be running around.  Day by day…

That’s all for now!  Thanks again everyone!

Xoxo

Colleen

Day + 9 – Long Overdue! 

What a day… I’m so thankful to be home. However….  Last night,  an old enemy returned;

 Now,  I ate very little all day,  so I know it is not all food related,  we are pretty sure it is all from the steroids.  Today,  it has gotten much worse and I spent the majority of the day in pretty severe pain. I spoke to my PA and we think the decrease in stomach meds once I left the hospital is the reason it got so bad so fast. She called me in a script, increased nexium and hopefully this will fix soon.

In the meantime,  not even stomach pains could keep me from Operation Rosie!  We pulled up to the neighborhood and I started to cry as I saw Fran, Vonna, Krista (and beautiful kids)  with our neighbor Shirley standing outside my orange bow and balloon decorated house welcoming me home. Complete with kid made signs.   It was more then I ever imagined and put me over the edge with emotion.  I went inside and sat for a while as I have very little energy.  Walking 20 feet is pure exhaustion.  Then Vonna presented me with the best gift ever…. 2 bottles of Maalox.  Krista and Vonna had gone all over looking for it.  Apparently there is a recall on packaging.  Vonna was able to find a generic brand at her pharmacy.  I downed a shot like it was a special reserve whiskey, got in the car and we all met Brooke at the school.  Melissa was ready to go.  Operation Rosie was underway!  

I have the best friends and family!

image image Iimage image

We came home and I took a bath.  I’m not going to lie.  It was amazing.  I finally felt clean.. Until I got out of the bath and broke into a sweat from the exhaustion of actually bathing.  It’s a viscous circle.  Then I laid in my bed and slept.  Today, I slept about 3 times for an hour each… Waking up from steroid hot flashes, headaches and stomach pain.  But I finally slept… In my own bed and I am so, so thankful. 

For dinner, my mother made me pastina.  After forcing the first bite, I was able to eat.  Afterwards for an hour or so, I felt good.  Then I noticed my steroid induced high heart rate seemed better.  It was down about 20 beats.  Maybe, just maybe…. the steroid hell is almost over and can actually focus on recovering from the chemo. I have a good feeling.

Xoxo

Colleen

PS – for those Non-Italian… Basically my Texan friends.  This is pastina. It’s a tiny pasta that she cooks with an egg and bit of parm cheese.

 

Day + 8 – FREEDOM

  

Well,  I write this from the comfort of my hotel room.   I’m still in awe of today.  

Last night,  I was in pretty bad bone pain.  I took Tylenol at 9:00 and at 1:00 was ready for a Norco.   Neither touched it.  It was an on and off night as I tried to sleep happily in pain…. as I knew that was a good sign.  My nurse walked in at 6:00 that morning and I said… Nancy,  let me hear a .1…. She said… What about a .6?  I screamed…  .6? That is .4 away from a release!  I woke my mother up who was in a blur and we all cheered as we thought about what was to happen.  My Doctor came in at 9:00 with a huge smile.  He said,  were going to retest you this afternoon.  I have a feeling you are leaving today!   I hugged everyone… I know.  I’m not supposed to hug! As we waited I checked flights and booked one for the morning (knowing we could easily change it to the evening). My mom packed my room and my dad went to Apple to fix my iPad that , like my stem cells,  went nuts the night before.  As I waited,  I tried to keep my adrenalin down so my heart wouldn’t race.  It was hard.  I got a text from my Stemmie buddie Don saying that we were all going to meet for a group picture at noon.  Then the phone rang.  It was the worlds best PA. She needed some info from me and then said,  Colleen… We looked at your numbers and while your WBC is .6,  your AN is only .2 (I pretend I understand) that makes us think that the .6 may be a false number.  It may still get to 1,  but you may be spending another night.   I joking told her that she needed to check the negativity at the door and I chose to believe that the AN # was false.   We laughed and knew only time would tell.   Either way,  I knew I was less then 48 hours from my Rosie.  She was going to lunch and would stop by after to go over the discharge instructions with me.  This way tonight or tomorrow,  I could leave as soon as I got good numbers!

At noon,  I met my stem cell buddies (except Mike who couldn’t get over – we missed you Mike) and we talked and took pictures. Oh, someone send me one.  Lol then I went back to the room,  sat for a while and before you knew it 2:00 rolled around.  Kaitlyn came in and started going over all the discharge instructions with me.  While tris happened,  the nurse came in to give me my shots and take my blood.  I made Katilyn stop so we could send good thoughts to the blood and the nurse said,  don’t worry.. I’ll pray over it.  We finished the discharge ppw and hugged goodbyes in case I got released.  My dad went off to the pharmacy to get the prescription and my mom came up.  We started taking photos down and next thing I know my nurse,  Kaitlyn,  Amy and Allison come walking in with their thumbs held high!  You are outta here!   I could barely contain myself. I said… I hit 1…. She said no,  2.6 and your platelets were 49.  You were working some overtime last night!  I sure was!  Within the hour I was in a cab on the way to the hotel.  I’m exhausted and completely and utterly overwhelmed.  I will post more tomorrow is I can.  My wonderful friends Brooke and Melissa are on hand for Operation Surprise Rosie!  We should have some video of that.  Thank you  all again for your prayers.  Please keep me in them a while longer as well as the most wonderful 5 people I could have ever shared this experience with and their amazing families and friends.   It was truly amazing. 

Xoxo

Colleen

PS. The nurse took the picc line out.  I didn’t feel it at all.  Honestly.  I didn’t even know she started to pull.

PSS.  Judy and Don just sent me this.  I guess it didn’t take long!  Lol

  

Day + 7…  Watching the Labs

Hi everyone!  

Let’s see… Today I have felt good.  I’m fatigued,  have some bone pains and am shaky,  but that’s all part of the plan.  I can take it. The most exciting thing that happened was when my dad lost a hearing aid and we tore the room apart for a good 35 minutes looking for it. I mean,  no wonder I am fatigued!   My WBC has still stayed put.  I can’t wait to see even the slightest of movement.  A +.1will have me jumping for joy, bone pain or now  My hemo went up a bit and my platelets went down to 25 after my 35 count after transfusion yesterday.   The good news is,  when they checked it again at noon… It was 29 and I didn’t need more platelets. I hope that is a good sign…. Honestly… You never know.  Oh.  It was on his shirt by the way… His hearing aid I mean.  Lol

  

My mornings tend to be the same.  Wake up, get counts, eat,  rest until Drs come.  Yell at my mother to leave and go back to the hotel, walk a mile (yes, you heard me) shower and sit in the chair.  I try to avoid the bed, but you never know when there will be a hearing aid emergency to throw ones schedule off kilter.   My hips and legs have been hurting.  I’m trying not to get my hopes up that that means engraftment soon, but I am regardless.  I keep planning out my return home and surprising Rosie.   I can’t wait to see her face. Dr Burt was so optimistic today. He kept saying how good my counts were… Which he knows….they look low to me.  Lol.  He told me that he is going to get me back to my little girl very soon.  I trust him with my life, so I trust him with this.  Home soon is important,  but healthy is more important.  I even dared myself to look up flights today.  There are 2 direct flights a day Thursday through Sunday and as of today,  they all have availability.  

On the home front, Fran is doing amazing. What mother can leave her child for 6 weeks and not even have her shed a tear. I am so blessed.  I could not have picked a better mother in law if I chose myself.  Thankfully,  I got one of the best.   Between her and my parents, I Am never going to be able to repay all they have done for me.  Everyone really… Rosie’s AMAZING teacher (and my fast friend) ,  my brother, brother in law and sister in law… all my friends who text me, answer my pharm questions, go to walgreens, get my daughter ready for her 1st communion,  send me cards and funny packages to keep my spirits high or just make me laugh with obscene texts all day long and even oversee housekeeping for when I get home.  I am so blown away and hope to God I am an ounce of the person to deserve it! I can honestly say… Out of this whole process, that is what I will remember.  The love and laughs! 

Xoxo

Colleen


PS – that obscene text thing was not directed at any one person. It was directed at the dozen of you who fit that category!   I love that!

PSS – since I have had myself on this strict diet for my gerd,  I have been so good.  Last night my mom came back to the hospital,  forced me to live stream the Kardashians and ate apple pie in front of me.  The audacity of it all…. In shock,  I took a picture for Amy.   I promised her I wouldn’t put it on Facebook… Technically,  this isn’t Facebook!  

  

Day + 6 – Farewell Amy… Please Don’t Leave Me

Hi Everyone,

It’s Sunday… Day +6!  Woot, woot.   Well.  This AM I needed platelets again, but other then that all is the same.  In fact,  Dr. Burt ordered another blood test this afternoon to check them.  If they are still low I’ll get s bag tonight.  He seemed really happy with where my counts were which was good since they look the same to me.  Lol.  He kept saying it was really good.  I asked him if pulling a good harvest meant I would get some good numbers in.  He said… It’s hard to say.  When I said that is too bad since I harvested 43MM he was impressed   I have mad harvesting skills!   Lol. I do have some slight hip aches which is usually a good sign that I am starting to graft.  I talked to my nurse because I think it is too  soon to be the Neutropen… He said it really wasn’t.  So who knows. I just want to leave healthy,  even if that means I don’t make my goal of being home this weekend , I’m ok with that.  Wouldn’t it be nice though!!

Now today was a weird day.  I slept off all night.  Not horrible, just not great.  Woke up and had a cup of oatmeal with a banana smashed in it, yogurt and cup of cantelope.  GERD diet working (with IV meds).  Then I got benedryl for my platelets, tried to sleep a little.  I do it think I did. Watched Amy try and take a shower 5 times, but the room was taken.  Thankfully she got in there.  Lol then I decided to write thank you cards and wrap some gifts for the nurses and staff who have taken good care of me.  They work long shifts so there is a chance I won’t see some if them again.  After that, I had my picc line dressing changed…. So clean.    The dreaded time approached.  My Amy was leaving me. NOOOOOOOOOOOOO

  

 

While she packed up, I walked a mile in the halls.  Met a very nice woman who is also in for an AI disorder, (different doctor – different regiment). Who was beginning her journey.  Gave her my tips and tricks. Took a shower, ate and now I wait for another pill to try and slay this headache.   What am I going to do without Amy?  Who is going to laugh with me when my mom (with the history of GERD and esphogeal cancer) suggests really bad GERD foods for me to eat..  Minestrone soup?  Who is going to watch romantic comedies with me at night?  Well, I guess my parents are up.   I have to say, she planned her visit perfectly.  It made the last few days, even the bad one, fly by.  I’m going to miss her terribly.  (Sweating emoji)!

Well,  I am in a bit of pain today, so I am going to end this post early.   I hope everyone had a great weekend!

Xoxo

Colleen

AMY COME BACK,   DONT LEAVE ME…COME BACK,

Day + 5 – Spaghetti Pomadoro, A Survival Story

Hi Everyone,

It’s Day + 5!!  2nd day on Neutropen shots, so not much longer before we start seeing TLTC start to go up.  Dr. Burt said anywhere from Day +8 to Day + 12.  So I AM READY.  I CAN BE HOME SOON. I am just visualizing sitting in my driveway watching the kids play.  I don’t care if I have to wear a mask and gloves. YEAH.  Needed a bag of platelets today.  That was no big deal at all and I enjoyed the benedryl sleep I got from it.

Before I start my saga…. I have to say that today, the best thing happened.  My dear friend (and coworker) C took Rosie to our company picnic.  I facetimed her when she got home and it was pure joy on her face.  Pure joy on her unicorn painted face.   I wish I grabbed s picture.  She had the best time with C’s kids and even planned a little part-tay playdate for tomorrow.  That alone made my past 24 hours deal-able.

Where do I begin.   Well. When I left you last, I was here

  

This got progressively worse until it hit it’s worse at about 10:00 PM.  Then, like an angel sent from heaven above, I get a text from a dear friend (and Leukemia nurse) M.  We start talking about it and she forced told me to ping my nurse and have her call the doctor for some Malox.  I finally agreed thinking I either need to have my gastro track  removed or call the doctor.   The nurse comes in and said, she would authorize the Malox.  Praise God! Now I have never had Malox before, but I am now going to see if I can petition the great state of Texas to allow me to marry it.  Honestly.  This is the picture I text to M. at 11:00 at night.  (I am truely horrified that I am posting it, but I no longer have pride of apperance.  Lol).

  

I will not allow anyone to throw that cup away.  It is my beacon of hope for the rest of my journey.  Which is sadly true. Lol

Within 15 minutes, my pain reduced 80%.  This was just unreal for me.   I quickly layed down and got about 2 hours of sleep until it was vitals time.  After vitals,  I got another 3 hours so I was feeling pretty good with my 5-6 hour night and only slightly fiery GI track.   

This morning, I wake up and anxiously await Dr. Burt.  I mean, I had 3 hours to obsess so I wrote a list (which in my mind was board of directors presentable case) of why probiotics was not helping this woman and I needed Previcid or Nexium ASAP.   I was ready,  I ate some food that Amy and I researched was low acid producing.  Rice crispies, banana, yogurt.  I went to only water today.  I sat on that bed and waited for him.  I will woo my way into a previcid. Well,  my day nurse came in, took one look at me and said.  You need new meds.  By the time he came to see me, the plan was already in play.   They switched me to an IV probiotic, Malox every 4 hours and a different pink drink 4x a day.   I was fine with that plan now that a golf all sat in my GI and not 100 dancing monsters, but I was left feeling empty  that I didn’t get to plead my case so I told it to him anyway.   He was like. Um, ok… You can have Nexium if you want, try this first. Apparently, it is the only GI medicine approved for use by the hospital pharm boardand Nexium brought in would require additional approval.  He didn’t mind getting it, but thought the IV would be good for me.   Whatever… Golf ball?    Then,  he asked the best question ( it really should be the title of today’s blog, but I don’t want to take away from the horror of yesterday, so I didn’t).  He said,  “Is this the room with the orange balls?”   For a moment, I didn’t know what he meant.    Then I realized he meant my snack cheese balls.   Ladies and gentlemen,  I am now going to be remembered by Dr Burt for my love of cheeseballs.  My life goal is fulfilled.  Seriously.  I mean I am unbelievably obsessed with HEB (TX grocer) brand Xtreme cheeseballs.  So much so that I didn’t even touch the ones we had.  No other brand will do.  He wanted to know what I used them for.  I use them when getting steroids.  The steroids leave me with an unbelievable since of metallic taste in my mouth and if I eat the “orange balls”, it covers it up. Best question ever!  He also said he thought the steroids were making me manic.  Um YES, YES THEY ARE!!  Lol

After he left,  I got my platelets and another 4 hours of sleep.  Priceless.  I woke up to my parents and Amy coming to the room with lunch for me…. And I wanted it!   I had a baked potato, green beans, soy chicken and noodles cooked in veggie broth.  All low-acid and GERD approved.  Very good and I over indulged, but the effect wasn’t horrific.   My regime was doing its thing.  Then,  Amy and I walked a mile in the halls and WAIT FOR IT!!!!!  I rode the bike for 1/4 mile.  Watch out fellow HSCTer Michael.  You may have to wait all of 30 seconds for me on that machine next time you are in there.  Lol. Took a shower and here I am.   All and all a good day.


Xoxo,

Colleen

PS- Amy’s last night 😓😓😓😓