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Apr 28-May 04

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First off, I want to say THANK YOU. I have so many amazing people in my life. I have so many amazing people that I don’t even know praying for me, cheering me on, thinking of me. This means the world to me, especially when I can barely find the energy to be there for myself. I’ve had Facebook comments and messages, texts, calls, Snapchat pics, Instagram comments, on prayer lists at several churches. In one form or another, people have been thinking of me. Thank you, and please don’t stop. 🧡 

Second, cancer has been kicking my ass lately. Until I receive the transplant, there isn’t much I can do. I still take a low dose of chemo daily. I can’t take anything stronger - my body is way to sensitive. Until I’m in the hospital and can have care 24/7 and access to blood, platelets, fluids and medicines at my disposal, I can not start any stronger chemotherapy. I will be extremely dependent on all of those for several days, weeks and possibly months. My care team is doing everything in their power that they can. I have some amazing doctors, coordinators, nurses and social workers. Transplant patients get a HUGE team. 🧡

Third... my cancer is progressing and not in a good way. With a transplant so close, I wish I could find comfort. A transplant is my only chance to be cured. But I’m scared. I’m terrified. I have had my transplant date juggled around several times and not knowing for sure when it will be at the moment does not bring me peace. 

I’m not terrified of the transplant itself, I’m terrified of the cancer. I’m terrified of what this cancer is doing while I’m stuck waiting for the transplant. What it’s doing to my body, my mind and my spirit. I’m terrified of losing who I am. I’ve spent years learning how to love myself. I’ve manifested this amazing person - and if you know me, you know I’m amazing 😉. I am huge on putting positive vibes into the universe, believing in the Holy Spirit, karma, smiling through everything, I believe pain is only temporary. 

Example: when I was having my port placed and my most recent biopsy - how I got through them, I cracked jokes and I smiled. I laughed with my doctors and nurses. I felt pain but I also kept telling myself it’s temporary, this will be over in a few minutes. And it was, it was over in a few minutes. Yes there was pain after, but it was temporary and eventually went away. My port that was so painful for several days, now barely bothers me. PAIN IS TEMPORARY. 

Finally, I’m just ready for this chapter of my life to be done with. I’m drained on every level possible; physically, mentally, emotionally DRAINED. I struggle every day, sometimes hourly, to push myself. I don’t want to leave my bed, I need help taking a shower, I can barely walk a few blocks with out being out of breath. Being stuck in this sick body is crushing me. This is not supposed to be my story. I’ve already overcome so many obstacles and statistics in my life, that this is NOT how my story is supposed to end. I’m not saying my story is ending now, but somedays it’s hard to see the next chapter when there have been so many setbacks. 

And to add a little more: 

Today, especially, has just been a hard day. Tomorrow will be better. Or, it could honestly be worse. But my mind set tomorrow will be better and I’ll be able to handle whatever comes my way with a little more grace. I post a lot of positive things and the good news, etc... but there are rough times too.

I have CML, which is a blood cancer - Leukemia. It is caused my a translocation of chromosomes 9 and 22. They switch places and it really screws with the way my bone marrow produces cells. Instead of producing healthy cells, the translocation tells my body to produce unhealthy, cancerous cells. 

I now have an additional chromosome abnormality called Monosomy 7. Monosomy 7 is ANOTHER genetic mutation that causes my body to create cancer cells. In Monosomy 7, there is actually a missing piece of the chromosome. This is more common in AML and MDS. (I am bordering the line of AML, and if/when I reach that point, it becomes very aggressive. Having monosomy 7 is unfavorable and has very poor outcomes.) It’s extremely rare for someone with the 9/22 chromosome to have the abnormality on 7. It’s believed to be cause by other chemos and medications used to treat other cancers.

It’s heartbreaking to be going through so much. (Especially during covid. It just complicates things so much more.) I’m sure I will end up in a blood 🩸 journal somewhere that will help future doctors. I really hope that someone, somewhere sees everything I’ve gone through and can use it to save someone else’s life. I truly believe that is my purpose in life. To change someone’s life, to save someone’s life. 

I really hope everyone is having a good time during these crazy times. Hang in there, I’ve been hanging in there for a year and a half. 

🧡 Sarah.

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