O/T--An update: Mom's cancer--and now dad's.

[luvmymom]

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.

[Maia]

holding you, right now, sharing the pain.
(((hug)))

[vilca11]

So very painful and sad... My heart is with you and your mom, asking Universe to have mercy... dear girl...
Hugging you like your mom would... Vilca

[Choijk]

I am so sorry, luvmymom. I have followed your posts from the beginning as I am also the only child and it is my mom who was diagnosed with colon cancer. I am also of similar age - 34, recently married, and was planning to have children when my mom got diagnosed. I can't imagine what you and your parents must be going through, although I lost my father to leukemia. When my mom got diagnosed, I was so angry ; how life is so unfair; how can both parents get cancer; how we already suffered enough; why my life came to a halt when my friends have no care in care in the world , starting a family, and have two healthy parents.

Luvmymom, I will be praying for your father and strength for your mother and also for you, husband, and baby.

Have peace as you receive all of gods goodness.

[skypup]

All best wishes coming your way, for everyone in your family. Love, love, love that baby -- I'll bet that helps your mom. Please let us know how her scan turns out, and if you are up to it, keep us informed about your dad. You are part of this family. Wish I could do more...

[Guinevere]

You & your mom probably do have PTSD! I know I do. No watching medical/surgical scenes for me - even comedies.

My goodness! I'm glad your mom is able to take care of your dad. That will become more and more important to her as time goes on. If you have people saying, "Just let me know if there's anything I can do, this is the perfect time to say, "Please take my mom for her colonoscopy while I help my dad." Or "Please sit with my dad (or my baby, depending on who they are) while I take Mom for her follow-up colonoscopy." You & your mom know how important these follow-ups are but also want to make sure Dad's okay. It's definitely time for all hands on deck. I'm praying that someone steps up to help.

God bless ~
Guinevere

[luvmymom]

Thanks, all. How sweet of you all to take the time out from your own battles to send kind thoughts to me, and mine.

Choijk, yes it is the same; I am 35 and married only 15 months ago. And I feel the same as you do when I look around and see all my friends living normal lives.

The nurses seeing my dad now have have no idea who he was just a few months ago. He wasn't this drugged-up shell with a vacant expression who needs assistance with basic body functions, but whose brain no longer works well enough for him to understand that, let alone the concept of a "call" button. Until late February, he was a kind and vibrant man with a wicked sense of humor, who would send the most beautiful e-mails.

For decades, he worked in a lab that he can see now out his hospital window.

I don't know if he even knows this now, but he was a cancer researcher.

[Choijk]

Luvmymom, im so sorry about your father's decline. Somewhere in his mind and heart, he knows that he is loved. What a difficult time you are facing. Sending you my best and abundance of blessings.

June

[SugarBubbie]

My step dad (who was a wonderful man) died of a glioblastoma (size of an orange) back in 2006. He had surgery to try to remove it in Jan 2005. It was too far gone according to his brain surgeon once he got inside to see. He lasted at home pretty much in a veg state until he passed away in June 2006. My mom had home hospice care to help her at least be able to be home with him instead of a hospital. Maybe you can check into that. It's a horrible cancer because it takes them away from you so quickly. I feel so much sympathy for you and especially your mom. My mom did not get cancer but she had to deal with her oldest daughter (me) getting anal cancer in 2007 and having the radiation and chemo for that. Then in 2011, I had to tell her that I now have breast cancer and would be doing all the treatments for that. I know she still feels the pain of losing my step dad and misses him terribly. I do too. You wonder why these things happen. Please try to remember all the good times with your dad so you can tell your baby later in life all about him. Remember to give your mom more hugs too. She needs them. I really wish you lots of hugs from all us here on the forum.

[luvmymom]

Thanks Sugar. Hugs and best wishes for your own health. I have looked into hospice, but we would have to stop all treatment and we (especially my mom) aren't quite ready to do that yet. It's very important to her that we feel we did everything we could to get my dad back some quality of life, at least. So after four rounds of chemo we will see where things are at, and then go forward from there.

Mom begins her colonoscopy prep today. It is a few months later than scheduled due to all the garbage we have been going through. We are all exhausted.

[luvmymom]

Mom just had her first post-treatment colonoscopy. One sessile polyp removed. Now for the CT scan in a couple of weeks. *gulp*