First of all, I really am so grateful for where we are and where John is. We have been blessed in so so many ways. He is 8 months post Allo transplant and everything is going better than expected.
In October 2012 when we knew something was going on, but didn't know what, I told John, "I think you have leukemia and it is going to be a really hard year, but we will be ok". I was right. But, I had no idea what hard was, and had no idea how hard things would be post transplants. and no idea that a "really hard year" would last more that one year. No one can prepare you for how life will change.
After John's Allo transplant we came home with a packet of do's and dont's. A BIG packet. At that point I was grateful that I have always kept a clean house and been a neat freak - maybe even OCD. I could not believe how much more I would need to do though, and how much John would not be allowed to do. I would have to do ALL the yard work (and I hate yard work). I love how the lawn looks right after being mowed and hate that 3 days later in needs it again. I hate weeding too. But John can not be around dirt or dust even with his mask on. John can not vacuum or dust the house or even be in the same room while it is being done (yep - all me, the kids do help though). All ceiling fans have to be cleaned every week (we have 7) and the one in our room twice a week. The whole house has to be dusted (I use lysol wipes) every week. Kitchen cupboards handles sanitized every other day. Our bed sheets washed twice a week, our bedroom vacuumed twice a week, our bedroom sanitized twice a week. All door handles and light switches sanitized every week. Honestly, I am SO tired of sanitizing all the time. It doesn't take long and I have a system for it, it is just a tedious chore and I am tired of it.
Like I said in an earlier post, John is feeling pretty good. And in a weird way, that is really hard. Because he wants to do normal things, he wants something to do. But, he still has a very weak immune system and can't go any where. We have one car and no money to do anything any ways :) Also since it is Winter and cold and flu season, John has to be very careful of where he goes. He can't even pick up car pools because of the confinement of a car and kids carrying who knows what from school. John's last day of work was Valentines Day last year - almost one year ago. He probably can not go back into a normal work setting for about one more year. It is HARD. He really wants to work. His appointments have been cut back a lot too, he does not go to occupational or physical therapy any more. He has a clinic appt once every 2 weeks and a lab appt (10 min away) on the off week. He still goes to his therapist once a week though. And that is it for appointments. At one point he pretty much had one appointment every day.
I have been feeling judged lately be some people for choices John and I make. One of the things I have really learned this past year is to really think twice before judging others. My eyes have really been opened up to what might be going on in someones life. And I am not perfect, but I really really try to never judge. I have learned that everyone goes through HARD things and those hard things are different. There are lots and lots of things we do not do as a family. For months I tried to do everything I could and keep things normalish for the kids. But, that meant, being a single mom. I would take the kids everywhere by myself and it sucked. One day I was thinking of the "Good, Better, Best" and although it is definitely "good" to take my kids to a ward christmas party, it might not be "best". It is best to be home as a family and not leave John home by him self all the time. So, I have stopped doing a lot of things and prefer to stay home with John and be a family. No one knows what HELL we have been through these past 15 months. No one knows what it is like to be us. We have made many friends this past year and some even similar situations to us (family with 4 kids and Dad has cancer). And we can talk and have a lot in common but we do not know what it is like for the other family. No one knows what it is like to be me, to try and keep my kids happy and take care of a husband whose body is shutting down, to miss her parents every day and never in her life wishing for them to be here more than now, to have in laws 2 states away who haven't been able to help much. To want to do normal things, to tell kids "no, we don't have money for that" way too many times, to not be able to vacation or even go camping. To want to have a somewhat normal life and be no where near that, and feeling judged by others who do not even know what we have been through.
I am so grateful for the family I have. They have done what they can. 3 of my sisters have left their jobs and families to come take care of mine for a week, my mother in law came for a week and my Aunt came for a week. I do not know what I would do with out that support. Yes, we have great neighbors and friends who have helped the other 30 ish days John spent in a hospital when I did not have family here to help. But, I am really missing having a normalcy to life. Right when John was diagnosed my sisters and I were planning a sisters weekend to Palm Springs. I don't get breaks from my kids very often so I love our sisters weekends. Obviously I couldn't go any more and my sisters did go. That was really hard. And now my sisters are planning a camping trip to Yosemite for this summer and we can't go - I really hate it. It is just hard.
My Dad passed away from cancer when I was 16 (over 20 years ago) and my Mom passed away from ALS when I was 11 (over 25 years ago). There have been several times in my life when I have really missed them and wished they were still here (obvious things like, prom, first dates, leaving for college, getting married, giving birth, having a miscarriage, adopting . .) But, this past year has been the worst. I have wanted to call them so so many times and wished they were here every day. It has been hard.
On a lighter note :) Yes, I am excited for a family trip to Disneyland in a month. Yes, it is a "trip", not a "vacation" and I could really use a vacation. But, this has been the kids reward trip. We have told them for the past year that as soon as the Doctors say Dad can go to Disneyland, we will go. Good thing for our tax return, because that is paying for this trip. But, I am already missing knowing this will not be a typical trip. I will have to go into the timeshare room and sanitize EVERYTHING before John can even go in, John will have to put sunscreen on every hour (sunburns can bring on GVH), we will have to take hand sanitizer to Disneyland, John will have to wear his mask, and John will not have all the energy he would like. Our plan is 3 days Disneyland and John is only going 2 days, so I will have a day by myself with the kids. Good thing for a responsible 13 year old or no way I could do it :) And, although Disneyland is a fun and exciting thing, we have 4 kids who have issues with any change. So, every time we have taken a trip, attitudes, back talking and tantrums are way way worse. They do not understand it and it isn't fair to anyone, it just happens every time something changes (breaks from school, having friends or family visit us, going on trips/vacations, a change in church time, any thing that is different).
Honestly I do not know if life will ever be somewhat normal. No matter what happens, this has changed us and I will always think about and worry about certain things. In 3 years the Doctors may tell John he is "cured", but I am sure I will always think about it and worry and tell him to sanitize and wear his mask :) I long for the day when John will get up and eat and go to work and I will get kids to school and pick them up and help with homework and fix dinner and then John come home. I can't wait to not worry about having kids friends over. I am trying to make the best of every day and I am truly grateful for every day, but some days are hard.
