I apologize for not keeping this blog current or updating in a few months. Since we came home life has been trying to get back to normal and I have sort of stepped away from all things "cancer" or "leukemia" related and sadly that has included blogging. I have started a new post so many times but not finished or published them. It seemed overwhelming to write, which was something new for me, as I do love blogging and it brought me a lot of clarity and sanity on this journey.
I am doing well, I am 7 months post transplant and doing better each day. My energy level is higher, I still fatigue quickly but I can tell the difference from a few months ago. I am no where near my pre transplant or chemo self but I am getting there. Overall since we came home I have been healthy with exception of some minor things. I have had to have my ear drained two times, each time I get a cold it sticks around and eventually I could not hear out of my right ear. I visited an ENT and they drained it both times. They hesitate to put in tubes, which is how to keep it open permanently due to risk of infection and I agree, I don't want them unless this persists. I also had a clogged saliva gland recently. I had never hear of such a thing and thought for sure I my ear was filled up again, but I went and it was my saliva gland. It was extremely painful and my face was completely swollen on the right side, but mostly it was painful. It was about a week before it got better and I hope to never experience that again. I am still on a lot of medicines, the doses change depending on my blood levels at my check ups, but this will continue for a long time. Some days go well and others are very hard to get them all down, but I do the best that I can with it.I am not happy about having to take them, but I try to remember they are keeping me healthy and I need to take them.
We found out one drug that I was taking was making me very ill. I could not eat and it got so bad that I was not eating at all, since my transplant in November I have lost 55 lbs, and I was experiencing vomiting, diarrhea and low white blood counts. It got really bad and something had to change as I was not able to eat at all. We stopped the medicine known to cause this and I immediately stopped vomiting and diarrhea. The eating has been a slow process, a month later I am able to eat now, but limited things, but I can eat and am sure to eat three meals a day. For weeks I lived on smoothies from Jamba Juice and Tropical Smoothie, some days this was all I could get down and I would have two. It is a terrible feeling to have all foods taste so bad you don't want to put them in your mouth and cant bring yourself to do it. Now that I am eating, my weight is stable again.
I have been back to Tampa two times for check ups and both times gotten great results. My bone marrow biopsy shows that I am 100% engrafted with my donors cells. Who could ask for any more than that. I return again at end of August for my 9 month check up.
My family is doing well and keeping me very busy. The kids are out of school for the summer now and having a lot of fun. Christian and Sofia attend summer camp and Olivia is home with me. She needed to get potty trained before she could go to camp. I am proud to say she is now trained and doing great. She attends a class at YMCA two days a week and we do small things to keep busy and she seems very happy. I know that she will enjoy going back in Fall to preschool, she does miss her friends. Life after a transplant is not easy. Not just after a transplant, but cancer I guess. Because my energy level is not where it would normally be, I have a hard time keeping up with them. I still need more rest than I normally would and when I reach a level where I have done to much, I am exhausted till I can catch up. I am an inpatient person, and I like to believe I should be myself, but every day I am reminded daily that I have a new normal and I am going to need to be patient with me and let myself heal. Easier said than done for me.
We moved back home in April and are enjoying living in our house again. After working with a mold expert my pediatrician recommended, we had the house retested and it came back mold free. We did have air duct cleanings and some cleaning things done before we came back home. The reason it tested for mold after all the work we had done last summer they think is because there was residuals in the air conditioning vents and it was blowing around. We had it tested two times and it is clean, so we feel confident that we are OK to move back home. In 9 months we moved our things nine times, that is a lot of moving for one family. It is a great feeling to be living back in our home, with our things and know we are not having to move again. We are grateful we were together over this past year, whether it be in a house, apartment, etc. but we all feel much more at peace being back home, there is no place like it, especially when you do not feel well.
I have had so many supporters of our family throughout this journey over the past year and for that I am very grateful. Thank you for your continued support and prayers. I hope to update more often and not neglect this blog like I have. I feel that I am coming around now and am more ready to talk about what I went through and even reach out to others to help them on their journey. This week I met with two oncology nurse students from a local university, they contacted me through Leukemia and Lymphoma Society, and they wanted to hear my story, my experience. They told me hearing me talk about it, describing what I been through was so helpful to them, they learned more than 10 patients in a hospital setting could tell them. It felt good to help them and realize how blessed I am to be here after all that I have been through.
If you are local sign up and join us for the Light The Night Walk on November 6th. I am the honored patient for the Boca Raton walk and am hoping to get many walkers there for Team Russo and raise a lot of funds for LLS. There is a link on the right side of the blog to click on for registration. It is a nice family centered night and a great way to help others going through cancer.