Life is short –

Life is short.  Oh how unpredictable things can be.  The whole world is going through a pandemic.  Coronavirus aka COVID-19.  The world is at a stand still.  People are required to stay home.  Governors are requesting citizens to shelter in place.  This pandemic has no cure.  No one is immune to it.  I try not to watch too much news…makes me anxious.  This virus attacks the lungs.  People with underlying health issues as well as cancer/ immunodeficient patients have a higher death rate.  I’ve been so scared lately.  So afraid of catching this.  I am not ready to leave this world.  I’m not ready to leave the people I love behind.  I’m definitely not ready to leave Mason behind.  Oh how I love him so.  I still have soooo much love to give this sweet sweet boy of mine.  I’ve barely stepped out of the house.  If people are caught outside in groups of more than 10 people, they may be subject to a misdemeanor.  People are practicing social distancing, staying at least 6 feet away from each other.  Mason has been out of school since mid March.  The school superintendent stated they’d be out of the school for the rest of the year.  And for Virginia, we’re required to shelter in place until June 10th.   Signs posted by the playground as well as soccer fields and basketball courts have signs from the sheriff’s department.  No one is allowed to linger at the parks.  In order to save the world, people just need to stay at home.  Just spend it with the ones you love.  And if you can’t see them….it’s nice to live in a world where we can facetime.

As in the words of Mac Miller ” Ain’t that bad”.   Life ain’t bad at all.  I may be in pain every other day, but thank you for allowing me to be safe at home.

Everyone falls down sometimes.  Feeling blessed that I get to wake up to another beautiful day.   Another day to live.  Another day to breathe.  Another day to spend it with the people I love.

Thank you Lord for giving me another day.

 

Feeling better

I started a new medication about a month ago to help treat my GvHD. I also started going to a chiropractor that uses the activator method. I haven’t felt this good in awhile. I haven’t had any pain in my shoulder blades. I’ve been able to yawn, sneeze, and cough without it hurting my chest or ribs. I’ve been able to walk more without getting short of breath so easily. I was able to run across the street with no problems. It’s so nice to be pain free.

First Secret

Last night Mason shared something with me. “Mommy, do you know who I have a crush on?” 😱 “She’s really nice”

I am so happy that I get to be in on this SWEET secret of his…his first crush. Grateful that I get to be here in this moment with him. ❤️

6 Months Post Transplant

Put on a wig to feel pretty…or maybe to feel a little like my old self.  I still have a hard time looking in the mirror sometimes.   I remember the days of mascara, eyeliner, and blush.  My eyelashes are still growing back…no mascara yet.  I have to wear a mask every time I step out of the house…no blush yet.

6 Months Post Transplant!!  A milestone to be proud of!!  I had my first round of vaccines on 10-17-18, a total of 5 shots (4 of which were muscle shots).  OUCH.  Of course the next day I had a low grade fever.  My arms and legs are feeling much better today.  I woke up in a lot of pain yesterday.  I tried to get Mason up and ready for school, but instead fell to the ground crying in pain.  It hurt to cry, it hurt to breath…

Mason called out “Sunny, mommy needs your help!!”  “Mommy, where do you want me to massage, where does it hurt?”

Telling myself to breath…inhale…exhale…it’s going to be ok…breathe….breathe…don’t cry…

Tears rolling down my cheeks.  Mason rubbing my back.

Sunny scoops me up from the floor and lays me down on the bed.  “Breath hunny, breath in through your nose, breath out with your mouth” “its ok…its ok”  “where’s your pain pills?”

He slowly sits me up against his chest with my medication and water bottle.  He lays me back down while he gets Mason ready for school.   The boys head downstairs to get the day started.

A few hours later I get a call from the orthopedic’s office.  The woman on the phone tells me the fluid they drained from my knee on 10-1-18 is positive for bacteria.  She tells me that I need to come in for surgery.  I told her they’d need to consult with my oncologist because I’m a BMT patient.

I know I’m going through a really hard time, but it must be difficult for my loved ones to see the struggle I go through.  The days can be unpredictable sometimes.

My oncologist started my Prednisone (steroid) taper over a month ago.  About two weeks ago, I was alternating between 0/10mg.  I had a low grade fever that was lingering, muscle pain, and joint pain.  It got to the point where I couldn’t bend my elbows, make a fist, or bend my knees.  On the day of my appointment, I used a walker…before I was called back, I could feel my knees buckle…at this point I knew I wouldn’t be able to walk, I needed a wheelchair.  It was scary.  When they called me back, Sunny was holding one arm and the medical assistant was holding the other, helping me into the wheelchair.  Lab results showed a high CRP (inflammation marker) value.  I was given a high dose of prednisone as well as an oxy in the clinic.  I also need to get magnesium in the infusion clinic, so an IV was started and I was brought downstairs.   Sunny picked me up and put me in the recliner and propped my legs up.  He took my tennis shoes off and adjusted my pillows.  I was still in pain…I hit the call button…”can I get more pain meds please”.  The nurse gave me IV morphine.  The magnesium infusion was about 4 hours…I started to feel better by the end of the infusion. My brother picked me up after work and wheeled me outside. He drove the car up to the front and helped me in. A few nurses walking into the hospital saw us and helped us as well.

I wouldn’t be able to get through all of these rough days without my family.  Everyone has helped me out so much.  I am forever grateful for the wonderful support system I have.  I love each and everyone of them so much.  I had no idea how difficult recovery could be.

I’m happy I have family so close by. Family that checks on me everyday. Checks to see if I need anything, even if it’s rest. Thank you family. I love you. I’ve always had a difficult time putting my feelings into words, even harder now after radiation. My point is, I’m a lucky girl to be surrounded by such wonderful people.

Emotional Well Being

I had no idea how I’d really feel after my transplant.  For some reason I feel emotionally drained.  I guess I just want life to resume what it used to be.  But I can’t keep looking back.   Life is moving forward.  Everything is moving forward.  I am trying my hardest to be me.  Be patient…things will return to normal.

I am forever grateful that I have a second chance.  Being alive.  Being here.

Mason is a reflection of everything I do, everything I am.  I tumbled off the couch from pure clumsiness and froze on the floor for a second.  He ran over to me and told me it was ok and said “don’t cry, don’t cry” in a whisper.   I feel as though he can see and feel my pain sometimes.  He’ll call out mommy just to say I love you.  He’ll remind me that my hair is growing.  He’ll tell my donor cells it’s ok to find their home.  It’s the sweetest.  He’s too young to truly understand everything that’s going on.  All the doctor’s appointments…the medications…my hair loss…the hospital stays.  I hope that he’ll realize how strong I had to be.

Life is beautiful.  Enjoy every second.

Day + 133

I had a few appointments yesterday, one of which I needed to fast for 12 hrs for routine labs.  I had to stop eating at 8:15PM, which is pretty early.  I also needed to fast 4 hours prior to my CT with contrast.  I showed up to that appointment a little earlier hoping they’d take me back sooner so that I could eat….that didn’t happen.   As I was getting instructions from the radiology tech, I thought…I know the drill, I’ve done this plenty of times, “breathe in and hold your breath, now breathe normal”.   She needed to start an IV for the contrast and asked if there was a specific arm that would be easier.  I’ve become a hard stick overtime.  Labs being drawn everyday, to every other, to every week.   Can someone really get used to this?

I have been feeling better.  PROGRESS!  🙂  The next time I’m scheduled to see my primary  oncologist is in 2 weeks!  Baby steps, right?  He also told me that I’d have to do another biopsy in a month or two.  I’d have to do a pulmonary function test in about a month.  I remember taking that test before the transplant, and it was really hard.  I have a month to prep my lungs for this.  Maybe I’ll start going on walks towards the evening or early morning.

It’s hard to believe fall is almost here.  And before we know it, it’s CHRISTMAS!!!!  My favorite time of year.  lol….maybe I’m jumping ahead a little, there’s just something about that Christmas spirit and Christmas music.   It makes me happy.  ❤

8-26-18

Woke up this morning with my chest hurting.  Feeling down today.  Emotional recovery is something I deal with day to day.  I guess its hard to explain sometimes.  I feel like I’ve been fighting this battle for quite sometime and I just want to live normally.  I want to feel free.  I want to walk outside and just soak up the sun.  Feel the breeze against my cheek.  Take a nice walk outside and just enjoy the weather.  I don’t want to feel pain.  I don’t want to be sick.  I just want to be me.  Just Stella.  No mask.  No umbrella.  No hats.  And lastly, no stares.   But then I remind myself….”you have to take it day by day”.  And everyday I wake up, IT is a BLESSING.  I’ve got to stay strong!

Day + 128

It’s been about a month since I’ve been home.  Mason started 1st grade this past Thursday.  I’m so grateful I was able to be a part of his first day.

Recovery the first fews weeks at home were difficult, but I guess there are good and bad days.  I pulled up to Walmart yesterday to pick up my prescription and was not able to make it in the store.  My ankle was swollen and hurting.  I had to send a group text out to my sister, brother in law, and brother that I was in the parking lot, but knew I couldn’t make it in.  I’m still learning that I need to take it easy.  It’s hard because I feel “useless” not being able to do simple tasks.  Still trying to get into a groove with everyone at home. Spending enough time with each other as a family.  Cherishing every moment we get without getting frustrated.  Life is GOOD.  Life is a BLESSING.

Sunny and I enjoyed brunch on Thursday.  It was a nice date with my love.  A little bit of normalcy doesn’t seem so bad.  My hair is growing back, it feels like peach fuzz.  🙂  I haven’t been in the mood to necessarily document my weekly growth this time around.  It’s taken longer this time.  Not sure if its from the radiation or transplant.

Mason has been anxious to leave me alone at home.  He thinks I’ll be at the hospital if he leaves me at home by myself.  He had a dream the other day that zombies were attacking us.  I was the only one without a weapon to protect myself.  And by weapon, he means a nerf gun.  He said he and sunny shot at the blue pregnant zombie.  It’s nice to know that even in his dreams he feels like he needs to protect his mama.  <3.  I can’t imagine how he’s processing everything.  I love him so much.  He’s been so brave and strong through this whole journey.

Labs, Follow Up, and Bone Marrow Biopsy

Before every biopsy, I feel anxious.  Not only is the procedure scary, but waiting on the results…nerve racking.  I’d like to think that I’m strong enough to do this without sedation.  I put on some oldies and laid on my belly while my oncologist prepped the site.  He gave me some lidocaine and after a few minutes…the biopsy begins.  My hip was raised off the bed a few times.  It’s hard to put into words how I felt while the procedure was happening.  I had tears streaming down my face, hoping that I don’t have to do this one day.   I’m tired of being pricked.  No more needles please.  Getting my labs drawn this morning was an ordeal, my veins just weren’t cooperating.

Healing is what I’ve been working on.  Trying to stay positive through this whole process. Mason has been my motivation.  He is my motivation.  I need to recover so I can be reunited with him.   I received a text message from his father today that read “Thanks since you failed to respond to my email.  For your information I have spoken with the court about your time away.  We’ll see the adjustments needed when this is all done.”   How can someone be so heartless?  Asking me for financial assistance during this very difficult time.  I am fighting to live.  I literally have to live day by day, hoping that I stay in remission.  Hoping that my cancer is cured.  Hoping that I can be cancer free for a year, 3 years, 5 years, 10 years and on.  Hoping that I WILL be around for Mason.  His dad has no understanding how difficult it’s been or has been for me.  Has he even thought about how it’s affected Mason?  I was the one that reached out to the school, making sure that he’d be okay during this transition.   But in his eyes, I’m not doing my part as a parent.   I’m doing the best that I can and will continue doing so.

Day + 60

Day + 60 today!  I had a follow up appointment this morning, a little dehydrated, but my labs look good.  I asked the nurse if they considered issues with my knee a set back.  I could see the look in her face that this could be.  At the allogeneic clinic today, I saw the dr in the hallway that was the on-call physician while I was in-patient.  He said he had spoken with my physician, and since the blood cultures showed no growth, I may have to see a rheumatologist.  I have an appointment on Monday, June 25th to get my stitches removed.  I’m really hoping it won’t be too painful.

On a more personal note, while I’ve been battling this awful disease, I want to make a promise that I will live my life to the fullest.  I need to enjoy all of these moments.   Remembering to be grateful that we only have one life to live.  I promise to be more patient.  There’s absolutely no rush in life.  I realized how fast life moves, just by watching how fast Mason has grown.  All of his little cuddles and kisses will fade.