When I got the AML diagnosis, my world came to a screeching halt! It's as if I was standing still and everything else around me was racing forward. I had two choices, get angry and blame God or have a teachable heart. I tried very hard to trust and stay positive so God could do His work in me. He was faithful!
At the start of my journey, a peripherally inserted central line or PICC line was put in my right arm. Not painful at all as they numb the area first. Rather hard to get dressed so I stayed in my hospital gown the majority of the time as it had snaps.
I had the best room possible with the most beautiful view of three lakes and the gorgeous sun rises. The little table in front of the window served as a great table for two for meals.
It was my decision to go ahead and cut my hair short before it began falling out. I think I needed to do this for my own mental state. We tried to make it as fun as possible. Rick didn't want to be the one responsible for my new look, but after much prodding, he conceded. My niece who is a cosmetologist guided Rick through the process via Facetime.
Once Rick started cutting, I could see that my short curly hair was not going to look like I had envisioned. I told him to just shave it off! Amanda and he agreed on a number eight clipper instead. He did a great job!
This was the first time outdoors since I entered the hospital. Oh what a great feeling it was to feel and see the sunshine.
As a nurse, I always loved seeing pet therapy dogs in the hospital. I've even seen a pet therapy pony! But to be the patient, what a great comfort!
Oh my goodness, this was the best gift ever! I got a box filled with art work made from the hand prints of my grandchildren in Texas.
Getting some much needed blood. Thank you to everyone who has donated blood. I received many many units over my stays. I'm so grateful for you!
My other two grandsons also made art work for me to enjoy. What a precious gift! All hung in my room.
My brother and sister-in-law gave me beanies. Theses were the best. So soft and not too tight around the head.
As if the nausea wasn't enough! Somehow, I had to get these big pills down the hatch!
I learned from another patient that having my own sheets and pillows would help with being away from home for so long. She was spot on! I ordered several sets.
One evening I was getting my clothes out of the closet to take a shower and my husband said, "Stop, don't move." I immediately froze thinking there was a bug on me. He snapped this picture and said, "Look. This S is proof you are superwoman." Ha, I wish! But that S made me think that God had me set apart for a little teaching and growth.
Once my numbers were high enough, I could leave. Yay! Today I'm out of here! I had my bone marrow biopsy and the intrathecal chemo last night which left me with a bad headache, nausea and vomiting so I'm a little weak and drained looking. But excited to be headed home.
I'm so glad to be leaving the unit. The doctors and the nurses were the best, including my favorite security guard, Mike!
Home and wore out! My head was killing me and the only way to get relief was to lie flat on my back. (This ended up being a spinal headache from my intrathecal chemo which lasted until Friday, a full week!)
Getting some much needed fluids.
I had to wear this bag for five days including the night. Inside was a bag of chemo called HiDAC or high-dose cytarabine. It was changed every morning at the infusion center. Not a huge issue until it was time to go to bed. I was afraid I would twist and somehow pull on my line. Rick was nervous it would break in the bed. But we made it just fine.
This little injector helps to boost immunity and to keep me from having to go back into the hospital with a neutropenic fever. The nurse put it on me, then set it to go off. I kept waiting and waiting and then SNAP! The tiny little needle was injected into my skin. (The waiting was far worse than the snap.) It would then give me the medication over a specific time.
This is what it looks like after it was taken off.
I guess it's obvious my platelets were low. I had to go in for a platelet transfusion that week.
Not just any check up. I have a donor!! Getting all of the information so I'm ready to back into the hospital in less than a month.
Boy was I wiped out! Much needed blood!
How about this wig! Pretty darn close to what my hair was like before, but without the frizz! :)
Wow! I have a donor and a stem cell transplant date. This calendar is filled with tasks I had to do to get ready for my big day.
On November 1, I had the PICC line removed and on November 12, I had the trifusion line placed. This line will be used to give me the stem cell transplant and any other meds needed to go in intravenously.
One last hoorah before I'm back in the hospital. Safe outdoor concerts are the best!
I prayed to the Lord to be on the same side of the hospital I was on my last admission. I get to see the water and the sunrises. This is extremally important to me and I guess God thought so too.
Chemo started the day I was admitted. They don't waste anytime here!
My hair started falling out and then kind of stopped. Weird I know. But then it came out with a vengeance.
November 19, 2021 is now my new birthday! My husband surprised me with balloons, cake and decorated the room and the outside of the door.
In this tiny little bag, which will take approximately thirty minutes to administer, is life. My donor, whoever he is, is saving my life! He underwent injections for the week and then sat in a chair for about 6-8 hours while he donated his stem cells. I don't know him. I have no idea why he is doing this. But, I love him! In my heart, he is now one of my own boys. Please, I encourage anyone reading this, go to Be The Match and consider donating. They need you!
My nurses are carefully checking and rechecking.
I'm finished with the bag of cells. Now we wait to see if they take. This is going to be the critical time. My pastor called earlier and prayed over me and the bag, it's called a Blessing of the Bag. I know God is fulfilling His promise to me from Isaiah 43:4.
This team of nurses was the best. I knew this from my last stay. But I was getting ready to see just how capable they were as I developed some nasty side effects from this round of chemo.
LLS was having the Light the Night event in Orlando. Our floor participated in its own way. First they handed out the white patient/survivor lanterns to hang on our IV poles. Then the nurses were either walking with us, (the nurse with me was the most bubbly and connected to my heart) or stationed all round the floor encouraging us and handing out beads and playing music. We had so much fun walking around. They even let one of my sons come up to walk.
Hahaha Just how many pumps can I push on my walk in the hall! Let's just hope I don't need anymore!
I had to have a little more chemo after the stem cell transplant. this helps to keep side effects down. I'm praying this is the last time I ever need this!
This picture of the IV in my arm means I needed more lines and even more pumps. I developed mucositis and was in extreme pain. I felt as though I had shards of glass in my throat. I couldn't eat, swallow my pills and it hurt to talk. I was nauseated and was vomiting which made things worse. It was during this time that I felt as though I was in a dark hole. I knew God was with me but I couldn't feel His presence. I have never been this low. I felt as if I had no more fight in me.
This bell hangs by the entrance and is on the path of our walks in the halls. Each time I would pass it I would get all giddy inside knowing that one day, my day would come to ring it. What an exciting and emotional day it was!
I am now seeing the doctor twice weekly. Checking my labs and medication level.
This is exactly a month after coming home. I'm feeling so much better and able to do some cooking. (The grapes were not for me.)
In recovery room after my bone marrow biopsy. This is the most important one, in my opinion, because we will find out if the stem cell transplant took and how well it took.
For now, this is where most of my day is spent, on the couch. Rick would hook my IV up to a magnesium drip daily which lasted four hours. He would then unhook me, flush the line then close the lumen with a sterile cap. He became quite the nurse! The magnesium would knock me out!
Wow! The stem cell transplant took! The percentage of donor cells in the marrow came back at 100%! The FLT-3 PCR test came back negative! This is the best news I could've received. This means at this time, I am in complete remission. I am reminded of the verse found in Psalm 118:23-24, "This was the Lord's doing; It is marvelous in our eyes. This is the day the Lord has made; We will be rejoice and be glad in it."
Feb 4th- I don't feel bad until the cramping starts-8/10 for pain. I've had quite a few episodes of diarrhea. Hoping it's nothing to worry about. Staying positive.
Well after a colonoscopy, I was told that I have graft versus host disease or GvHD. This means my new immune system is thinking my own tissue is foreign and is attacking it. I'm on medication and a bland diet to see if this helps.
Well after a few days of the former bland diet, my intestines needed more rest. So for now, I'm on liquids. If this more gentle approach doesn't work, I will be nothing by mouth and fed via the veins.
Unfortunately, the intestines need complete rest. So, I cannot have anything by mouth, not even water! I will be fed through the veins via total parenterel nutrition or TPN. This will be for about four more days.
No chocolates. No fancy dinner. But I love my new mask from the nurse!
I never dreamed of being in the hospital so close to day 100. So I get to have my bone marrow biopsy here and then go home. My intestines responded to the meds and rest. I'm up to eating some solids and it stays in!!
It's February 25th and I get to go home. I've lost quite a bit of weight as a result, but I'm sure I'll gain it back. Will continue with infusions outpatient for the GvHD.
Now that I am done with the infusions for my GvHD of the intestines, I am getting protected from Covid with the Evusheld injections. One injection each side of the bottom!
Enjoying walks in the early evening. My cheeks are getting huge from all of the steroids.
Most get their lines taken out around day 100 or so. But with some issues I've had, I kept it with me a little bit longer. So glad to be able to take showers without having to cling wrap myself!
My eyes began to get extremely dry so I was sent to see an ophthalmologist to rule out GvHD of the eyes. Thank goodness I didn't have it. But I did get these groovy glasses as a parting gift!
As if my face needed more attention drawn to it. Not only do I have big cheeks, but now I have GvHD of the face!
Just before I was diagnosed with AML, we were scheduled to go to the beach for the week. Obviously that little trip didn't happen. So my husband surprised me with a trip this year.
Almost a year to the day later, I got to walk the LLS Light the Night walk downtown Orlando. What a privilege to be alive, to walk with other survivors and to remember those who didn't make it in their battle.
It's been a year since I got my stem cell transplant. A year full of ups and downs. In and out of the hospital. But I made it! I know lots can still go wrong, my head is not in the sand, but I will treasure each day I have. I used to be concerned a bout what I looked like to others. Now I'm just glad to be seen!
At the doctor's office I was given a board to write on answering questions they had given me. They would then use these responses to encourage other patients. What a great idea!
They also gave me some goodies to go home with.
Nov 30, 2022- today is my one year post stem cell transplant biopsy. I feel great and am excited for the results.
I’m happy to say I’m still leukemia free and… I’m 100% donor cells in the bone marrow. So I’m a twenty-five year old male in all blood cells, immune cells and the like. Never have I’ve been so happy to hear, “Debbie we saw none of you on the test!” Also, my FLT-3 genetic component came back undetected, negative! I asked her what was next and she said I want you to have a very Merry Christmas and to go live your life! So that's just what I'm going to do. Merry Christmas!!
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