I am happy to say that the GVHD is under control! My liver test came back normal . I am having problems with an infection but that’s nothing new. I have to go off antibiotics so we can confirm it which means I probably won’t be feeling fabulous but it’s a small price to pay for accuracy. I am happy with the way things are going and still take it one day at a time.
I am able to start weaning off the prednisone . It’s a very slow wean but it’s a start. The stuff makes me feel like I have adrenaline running through me non stop. I can’t wait to be done with it.
Next week I get another set of immunizations as well as IVIG and if the flu shot is available, I will be getting that as well.
In the meantime I have been enjoying watching the boys play hockey, soccer and volleyball. It’s a treat to be able to cheer them on. Molly is keeping me on my toes but I’m loving every minute of it. I am organizing while I have energy and just enjoying life where I can. Tomorrow is Mom’s 60th birthday! Happy birthday Mom! Thank you for being such a big support to me and to our family. We love you !
Enjoy your week everyone!
Whether your fighting cancer or been through another sort of trauma I feel like we are all survivors. Some of us have something public to show for it some of us not. However I choose to celebrate being a cancer survivor because I am so grateful and feel so incredibly happy for the journey and who I have become from it. Cancer fixed me. Cancer brought me to where God wanted me to be. It taught me about love and life and value and Gods power.
We had family pictures done last week Friday and I had some fun with this sign . I’m excited to see the final outcome. The kids were amazing and cooperated too. We were a little nervous about the rain but I wanted them done no matter what . I’ve been put back on steroids and the one physical symptom of being on them is chipmunk cheeks. Remember this ….
I’m ok with the physical appearance of it because it has made me able to feel somewhat normal. All my GVHD symptoms like fatigue and nausea are gone. I’m an energizer bunny right now. It feels good to know that I’m not a lazy bum and it’s actually just due to transplant. I am soaking it in while I can. Enjoying my friends and family and church. I joined a book club . I was actually in it 6 years ago before I started working and I’m excited to go back. This has been the first glimpse of what life used to be like and I can’t take it for granted. I have been trying to organize while I have the energy. Once I’m off the steroids I could likely get many of the same symptoms back. The main reason for being on it is the GVHD in my liver. I still have GVHD in my mouth which is bothersome at times but not the end of the world. I also was diagnosed with arthritis in many of my joints. Steroids and cyclosporine have taken the inflammation away and it has been a nice break to not feel pain. Downside is I get very little sleep. Steroids will keep me up. My immunity is extremely low as well. So soon I will probably have to stay away from crowds again as flu season is beginning. I’m getting ivig every 4 weeks which helps a bit as well as immunizations. I am at risk for the measles and other stuff going around and am not able to be immunized because it’s a live vaccine and I am not allowed it for another 2 years.
I have a couple prayer requests. A few people I know are starting or continuing their fight with the beast we know as cancer. My roomie Colette has relapsed and a friend and great support Candy is about to embark in a fight with breast cancer. She previously fought Colon cancer so it’s not her first time but this time will be hard . Aaron’s cousin also is fighting breast cancer and could use prayers. A young boy Jacob is fighting the same cancer as Terry Fox and will be having amputation soon. Another friends Dad has lymphoma and is going through radiation and another’s friends Dad had a stem cell transplant recently for myeloma. Our pastors father is also fighting cancer . There are people grieving the loss of loved ones. Particularly the Santema family as they recently lost Hester. Hester fought so hard and unfortunately lost her fight . She was such an inspiration to me.
I know there are more but these people have been on my heart and I’m sorry if I have forgotten someone.
Here’s me with my Molly girl on my 1 year post transplant cancer free. I love this pup so much already. She has brought so much joy in our home and is really great to have around while everyone is out.
The Keg gave me a 1st birthday cake . It fed 14 of us . Lol
Some special peeps joined us for dinner . It was a wonderful day.
We are starting the crazy season over here with sports. All 3 boys started hockey. Dylan is playing volleyball, Gavin soccer and Madison basketball. Our schedule is rather nuts but it sure felt great to be back at the rink after not going at all last year.
Much love ,
Yes you read that right! On Thursday it will be 1 year since my stem cell transplant. Another year that God saw fit to preserve my life. The road has been far from easy and still has its daily struggles, sometimes debilitating but what an absolute incredible blessing to be here today.
September 13th we will be going for a yummy Keg dinner with some friends. I asked for a unicorn and rainbow party but the Keg seemed more appropriate. 🤪 Since my appetite is much better it should be very enjoyable.
I had my 1 year follow up appt last Tuesday as well as my first of 6 ivig infusions. The infusion didn’t go fantastic as I had a reaction within minutes. Beat red face, throwing up, dizziness. It was actually really scary. So after I calmed down from that they started again at a much slower rate. Took all day but it got in me. After I had my follow up appointment. My lung function test came back great. There is GVHD in my liver, possibly joints ( I see a rheumatologist on Tuesday) , my mouth and GI track. However the prednisone is working and most of the symptoms are better.
Thursday I had my next set of immunizations. 4 of them. The same day Aaron and I celebrated 15 years of marriage. I think our marriage has stood the test of adversity and pain as well as joy and happiness and I’m thankful everyday that I can call him my husband. I’m a blessed woman. We didn’t do a whole lot. We went for some appetizers and finished at Costco. 😂
I’m still taking my days one at a time but trying to get out more before flu season and all the nasty bugs are out. Still no immunity so I have to be careful. Ivig does help a bit. I’m happy for routine with school being back in and hoping to get back into bible study with my church. School sports starts right away assuming my kids make teams and hockey starts too.
So there’s an update. I’m still loving my little Molly. She follows me around everywhere and I love it. She’s so sweet.