Well, it's been a long time since I've done an update. Life has been crazy! We have settled in Utah and I've just finished my third consolodation. I had a doctors appointment today and they told me that they have found a perfect match for my bone marrow transplant! apparently it's really hard to find a perfect match. I am very blessed to have one. A transplant is my best chance for long term survival. Transplant requires a 30 day hospital stay, then I have to be within 30 min of The Huntsman Institute for 70 days in case I get an infection. I will be on immuno suppresants to help my body accept my new immune system, so if I get an infection it can become life threatening within just 2 hours. Full recovery takes about 1 year. I am very scared about going through all this, and I don't know how I will be away from my family for 30 days, but I know I have to do it. I heard a quote that said "you don't know how strong you are until you don't have a choice". That is very accurate!
So, it takes about 5-6 weeks to prepare for a transplant. In the mean time, my doctor thinks I might have a blood clot in my right shoulder where my central line is. So I will be going in to get my line pulled in the next day or two then I will probably have to have blood thinning shots every day for a while. The worst part is that they will have to put a new line in my left shoulder for transplant. I remember getting my first line in, it hurt for about 4 weeks! I am not looking forward to the new line! My doctor also might want to do another round of chemo next week just to make sure I don't come out of remission before transplant. When he told me this, despite my best efforts, I broke into tears! I really don't know if I can handle more chemo! My body and my phyche have had enough!! It's such a hard decision though. If I don't do it and I come out of remission then they might not be able to get me back into remission. Is it worth the risk to not do it? I really hate these decisions. I really wish someone would trade me places for just a few weeks and make all the hard decisions for me!
On a positive note, my amazing friends and family are putting on a fundraiser for me on May 4th. We are having a carnival for the kids, and entertainment and a silent auction for the adults. I'm very excited to go with my family and see everyone there. I really hope I'm not in the hospital on that day. All this talk of more chemo really throws a wrench in my planning!
Marc is staying stong, but stressed! He is getting ready to graduate from pharmacy school, take the exams, and find a job. He is such a support to me though. He is always there by my side telling me how much he loves me. Sometimes I'm afraid he wishes he would have married someone who could be healthy for him and his kids. I feel like such a burden. But I think he read my thoughts! He let me know that he would support me even if it meant getting chemo for the rest of my life, and he wouldn't want to be with anyone else. He's so intuitive ;)
My boys are handling everything pretty good. Conner is really frustrated that the doctors don't know what caused my cancer. He is all set to go to medical school and figure it out himself! Both boys keep telling me they don't want me to go to the hospital anymore. It breaks my heart because I know what is in store. I wish they could understand that I'm doing this for them, and that being away from them breaks my heart every second that I'm away from them. One day I hope they'll know just how much I love them.
You know, I've been sitting here trying to think of something wise and uplifting to say... and all that really comes to mind clearly is that I just want to let you know that you are loved. Thank you for sharing this journey with us and not shutting down in the face of such incredible hardships. I pray you will feel His arms around you when you most need it. God Bless!
ReplyDeleteHi Janette, you don't know me and I don't know you, but I saw this link on a friend's facebook page and read your first few posts. I just want you to know that my heart goes out to you. I'm also a mother of 2 young boys and I can only imagine how difficult it would be to face leukemia while trying to raise them. But, just by reading a couple of paragraphs on your blog, I can tell that you are strong and optimistic, and that your family loves you! And when you worry that you're a burden to your husband, just imagine how you would feel if the tables were turned... if he was sick and you were caring for him. Heavenly Father gives us strength to persevere, whether we're suffering from an illness or we're supporting and caring for someone who is suffering. It's so wonderful that he is intuitive and lets you know that he wouldn't want to be with anyone else. Even through such a difficult trial, what an awesome feeling to know that he loves you so much:) You are a beautiful woman, and I will keep you and your sweet boys in my prayers.
ReplyDeleteJanette! I don't know you, but stumbled upon your blog through facebook! Your story has touched my heart, and hit close to home for me. My sister had a bone marrow transplant almost 7 years ago! She is one of the only people they have EVER had that did not get a life threatening infection because of what my Mom did! They lived in a camp trailer in the Huntsman parking lot for 70 days to be close to the hospital, because they felt it would be more sanitary to not have other people have been there, etc.. Despite what they said my sister has been able to get pregnant and have a baby and everything! It was truly a miracle! I am so greatful that miracles happen still today! If you want to talk to my mom about the transplant and what she did to keep my little sis safe, feel free to call her at 435-257-7658, her name is Elisabeth. I will be praying hard for you and your sweet family! (Do the last round of Chemo... my sis didn't and it came back so she had to start all over!!)
ReplyDeleteThank you for the story about your sister. I am TERRIFIED of transplant, but I know I have to do it. It's so good to hear that your sister is still doing good. I can't believe she came out of remission right before transplant!! That is like my biggest fear! We are hoping to be in transplant in 2-3 weeks so I won't have to make that decision, but if it gets delayed more, you just made my choice much easier! It's also wonderful to hear she was able to get pregnant. I hope to have more children one day. Thank you for your prayers and I will pray that your sister stays healthy!
DeleteI feel so much of what you are going through. Feeling like a burden to your family, thinking your hubby would be better with a healthy wife for him and his kids. But their is a reason the two of you are together. I don't know anyone who could go through this by them selves. I also know how hard it is to go through treatment, and thinking "isn't this supposed to make me better, how come i feel worse" It really takes a toll on your body and your spirit. I had a really hard time excepting everything, especially being so young, with such young kids. Just know that you have a huge support group surrounding you. And a lot of people who love and care about you. I hope all the best for you. If you would ever like to go to lunch or anything, Please let me, I would LOVE to talk with you. My cousin once told me, " God won't give you anything you can't handle, You must be an amazingly strong person". hang in their girl, and take it one day at a times. my thoughts and prayers are with you.
ReplyDelete-Rachael
I don't know you, but I pray you get well. God bless.
ReplyDeleteJanette, I don't personally know you and your family however your story has moved me. I linked to your blog from Tom Peterson's facebook posting. It is difficult to understand why you have been chosen to cope with these medical challenges. I am a believer that things happen for a reason however it is difficult to understand and see the bigger picture of what is in store for you and your family due to the challenges you are experiencing. One could be, your beautiful little boy contributing to a cure so other families don't have to endure what you are experiencing. I don't know what is in store for you and your family however I am confident it will have a positive effect although it is impossible to understand at this time. Try to keep your spirits up and know you are blessed to have your husband and children with you.
ReplyDeleteJanette, you are one amazing woman, wife and mommy! Undoubtedly, your boys already know that, and will
ReplyDeletecome to appreciate anew your resilience as you fight and overcome this, when they grow old enough to understand. You are so loved by so many! We know you can do this, and are praying for you!!