So much has happened since I last updated this blog! I have to admit, the last time I wrote, I was not in the best of places. I was really run down, feeling sad and just wanted everything to be over. Over the past 30 or so days things have really started changing for the better.
I'm home- as in my home, the place where my stuff is, for the foreseeable future! I don't have to worry about going in for more chemo, leaving my daughter or have any more scheduled hospital stays! Of course if I got sick that all changes, but its nice to know I don't have any more scheduled treatments and its mostly just recovery from here on out. I still have to travel into the city for my doctor appointments once a week which can be a long commute, but its so worth it.
At my doctor appointments, I get my blood taken every week where they check for various things such as hemoglobin, platelets, white blood cells, electrolytes, my medication levels, and so many other things. There's probably about 8 tubes each time! My doctor also checks for any signs of graft vs. host disease, which I have been mildly experiencing. Since I left the hospital, I had a pretty bad rash all over my face and neck. It is most likely graft vs. host disease, where the donor cells attack your own, but just a mild form. It's been going on for a little over two months now, but its getting better. I have to be very diligent about wearing sunblock as these graft vs. host rashes are light sensitive.
Now that I am approaching 100 days, many of the restrictions I had are slowly starting to be lifted. The first place I went to was the mall to take Emma to see Santa. I had to wear a mask and gloves, which is weird but I didn’t care. I was just so excited to be out in the community again! This week my doctor said I don’t have to wear the mask and gloves anymore, but I cannot be in any large crowds or near sick people. I just try to time my shopping trips when I know the stores won’t be crowded. I am also allowed to go to restaurants now, but have to still be very careful with cleanliness and choose trusted places. I still have to avoid raw vegetables and salads unless I make them myself to ensure everything is washed properly. My next countdown is the next time I can have a drink! I have to wait until I’m off certain medications, probably about three more months.
I still have a PICC line in my arm and have to give myself IV magnesium, probably for a few more months. It’s getting easier, kind of just a way of life now. The last few days I’ve been getting it over with in the morning and it kind of frees up my whole day (it takes 4 hours). Its definitely a challenge because I have to take care of Emma and wheel around a pole that’s connected to my arm, but I’m getting the hang of it.
Last week was Thanksgiving. We had a small but great Thanksgiving with my parents. Thanksgiving has always been my favorite holiday- its about family, being appreciative for what you have and food. I like that there’s no stress of gifts and people can just be happy together. I’m always thankful, but in particular this year I am thankful to be alive. I would say there were probably three solid instances where I came pretty close to dying throughout this process so far; but instead, I’m here and got to celebrate with my wonderful family. I’m so thankful to have the best doctors taking care of me- who have showed such skill, but also compassion for treating our delicate situation. I am thankful for my husband who has never left my side, literally sleeping in a chair for months in the hospital. I am thankful for my daughter, who lights up my life and keeps me going. I am thankful for my brother for donating his stem cells, without them there’s a chance I wouldn’t be here. I am thankful for my mom for putting her life on hold to take care of Emma and I. I’m thankful for family that traveled thousands of miles to come see us. I am thankful for the continued love and support I receive daily from friends, family, and loved ones, it truly makes such a difference. There’s definitely more I’m thankful for, but I’d be here all day.
On that note, I’m definitely looking forward to the holiday season and being together with my family. My life has changed and all for the better. Obviously I wish this never happened, but I have such a deeper appreciation for life and for the love that surrounds me.
As always, thank you for the continued love and support! Have a wonderful holiday season!
Kristin
