Hello all. Some of you may remember my threads from my mom's Stage IIIB rectal cancer last year. I was, at the time pregnant. I don't want to post too much since what I am posting is off-topic, but a few of you have asked how my mom and I are doing, so I wanted to make one post just to update.
My mom has barely recovered from last year's surgery/chemo/radiation. And suddenly, now my dad has a brain tumor. It is a rare form of lymphoma that has set up in his brain. So just when I was hoping to celebrate my mom's recovery and my new baby, instead we are now dealing with my dad, who is getting palliative chemo and appears to be dying a horrible, long, and undignified death. We have no family history whatsoever of cancer, and I never thought one of my parents would get cancer, let alone both.
I won't describe in detail what has happened to my dad, mainly as I can't bring myself to. I will just say that I had a hard time imagining anything more frightening or difficult than the surgery/chemo/radiation my mom went through last year, but that what my dad has been through--both the illness and the (palliative) treatment--is much, much worse. In a matter of weeks, my dad went from normal to requiring 24/7 care--which my mom has been providing, because I have a small infant. My dad has a week of inpatient chemo every other week, and to reduce the swelling in his brain he is on high doses of dexamethasone that have nasty side effects (mom also got dexamethasone with FOLFOX, but not nearly as much as a brain tumor patient would get, and not as regularly). My dad needs someone with him 24/7 because he can no longer speak or care for himself, and the main problem is that he is also a danger to himself as his balance and judgment are simultaneously impaired, so that he thinks he can walk, and tries, but he can't.
My mom is going back and forth with my dad from the hospital to the rehab hospital (he is not in any shape to come home) and has not been home in over a month. I am so worried about her...I had hoped that she would spend her recovery taking care of her diet and relaxing; instead I cannot imagine a worse situation for her to be in while recovering from her own cancer. Due to having a 5 month old infant I am unable to help as much as I would like.
Next week my husband and I have to somehow figure out how to get mom to her colonoscopy and CT scans while dad is getting his inpatient chemo. Ordinarily I would have felt a ton of scanxiety for my mom. That has been blown out of the water. We are stretched thin between my dad and the baby. I have no idea what I am going to do if my mom's cancer recurs, too--but I have decided not to worry about it until and unless it happens.
One of the things I miss most, with my dad's cancer, is community. There isn't a great online forum for rare brain tumors: Not many people have them, their caregivers tend to be busy 24/7 taking care of loved ones who have become cognitively and physically impaired, and since the prognosis for aggressive brain cancers is weeks to months--well, there aren't many patients around who have the ability to type.
Please send us good wishes, and particularly send them to my mom, who is bravely going forward, day by day, through the depths of hell. I hope that my dad's chemo can restore some quality of life for a little time, and reduce the burden on my mom.
The last two years have changed me. I used to be a happy and positive person who thought about the future, and enjoyed making long-term plans. These days (and more after seeing my dad's horrible suffering) I live like someone in a war zone, with the constant feeling that all the people I love most may drop dead any moment, and a feeling that there is no point in making long-term plans, as what happened to both of my parents might happen to me. I wouldn't be surprised if I have PTSD.
I don't know how things are going to play out with my dad. I mean, I do know, because his cancer is not curable--but I don't know how much or how little he is going to suffer before. I just hope that my mom can, one day, have happiness and peace in her life again.
At some point when my dad could still speak, the neurologist asked him what year it was and he said it was 1958. I heard my mom say in a small voice that she wished it *were* 1958, as that was the happiest time of her life. (She was 18, and it was just before she lost her dad, and then her brother, and then a few years later left her whole family behind to move around the world and marry my dad.) If I could give my life to give my parents 1958 again, to have them be young and healthy and carefree, I would do so without thinking. But the universe doesn't work that way; it doesn't accept that kind of sacrifice. Offering my life would be easy. It's going on living, while watching my loved ones suffer--that is hard, and that is what I have to do.
The baby, at least, is doing well.