Our accessible vehicle has been in the shop for a week now. So three doctors appts I have taken and put together the manual wheelchair...we've gotten spoiled to say the least!!
There are some people that experience the fatigue that Zine is experiencing with this chemo. The dr said it could last three to six months. They feel fine as long as they are quiet and not doing anything. But when they try to go somewhere or do something they are just exhausted. So this is definitely something he has seen before.
In the next few days, Zine should experience nadir. Which means the lowest his blood counts will go. We have a nurse coming to our house on Monday to do more bloodwork and monitor things closely. But even after this season, for months Zine will be susceptible to infection. And Dr. L has lost a couple of patients in the past few months and each one of them has been due to infection complications. So we just continue to pray that God would give us wisdom on when to get out more, how to protect and not overprotect in the months to come! The nurse was super proud of all we had done to protect Zine during this time. I always worry are we going overboard or are we on target. And she assured us today we had not gone overboard and had been very wise.
We have seen no benefits of the chemo working yet. But the doctor was very encouraging that it could take up to six months. I don't know that either of us bought his encouragement but he definitely offered it! He did tell us of a drug that is designed for primary progressive MS. The results of its study will be released in April. But everytime we go, it feels like...well this might happen or this might happen or we can try this or we can try that. We are both very exhausted of this possibility or this trial. We did communicate how our stress level was extremely high and taking its toll on him and me! And even our kids! He could see it without us telling him. He is very compassionate.
Zine has come home on disability and today we were to decide if he would go back to work or continue on disability. The decision is that for now Zine is going to be staying home on disability. Please pray for us as we make this transition. Pray that we would trust God with our finances. That we would find "new normal" yet again. Pray that our hearts would be encouraged and not discouraged. Pray that we would see the joys of Zine being home! Pray for Zine's self image as this is totally rocking his world. Pray for our children as they adjust as well! We have never had dad or hubby home all the time. So it is definitely an adjustment for us all. His and my hearts are definitely concerned, sad, depressed, uncertain, etc.
Someone asked me earlier what we needed....my response was we simply were craving people's tenderness, attention, love, and care. We are tender! And our hearts just need to be loved and cared for tenderly right now. So if we respond to anyone in a short or frustrated manner, please do not take offense. Please just understand that our hearts are tender!
I have a friend that gave me this card months ago. It hangs on my refrigerator for me to see all the time! I also keep it in on my phone in my photos. I think I have looked at this picture a thousand times today!
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