While I realize it's been a month since I last wrote, a lot has happened. Not only with Mom, but in my own personal life as well. Finding the time to actually sit, much less sit and write has been difficult.
But it's time. It's time to update.
I can't thank you all enough for coming here as often as you do to read the updates. So many of you depend on this blog for updates on your friend, sister, mom, colleague - whomever she is to you, and it means so much to us.
The last update was titled Fear Has Crept In, and it was accompanied by A Lesson On The Brain. At that time, we were still just learning about this monster, and what it was doing to our Mom, sister and wife.
We are still learning.
But boy have we learned a lot.
Mom spent 3 whole weeks at Mary Free Bed Rehabilitation.
In those three weeks, Mom had many triumphs, and some setbacks as well.
And so did Dad.
The first two weeks were pretty "normal" if you can call them that. By normal I just mean routine: wake up, therapy, rest, lunch, therapy, rest, dinner, consult, visitors, etc. Next day: repeat.
She was originally scheduled to come home on Tuesday July 2nd. But on Saturday June 29, Mom had a seizure.
And then she cried, inconsolably, for almost 3 days.
And it was just her & dad.
For three days.
Dad called Mom's sisters to let them know what had happened. But to alert the rest of us would've brought on a "phone storm" i.e. calls, texts, messages, questions - that he just couldn't; physically, mentally, emotionally couldn't handle.
So we found out mid-week what he had just gone through.
He was also protecting us from seeing her in such a state as he himself had never seen before.
Dad had learned in those few days a little more about this monster they call GBM.
He learned she will most likely never be cancer free, and there is no cure for this disease.
He learned that this will most likely kill her. When? They can't say. But we can read statistics. Statistically, every day we have with her now is a blessing.
I say most likely, but they spoke more in absolutes. I hate absolutes. Especially in this case.
He and Mom talked about her options. She wants to try chemo and radiation.
And that's a whole other animal.
Every person is different, but still. It's chemo and radiation.
Mom said that she will decide when she has had enough.
On the side and away from Mom's earshot, Dad asked the question that I'm sure every first-time Stage 4 Cancer family might ask... How will my wife finally pass? Will she be in pain? Will she be suffering? What can I expect?
The answer he received was as gentle, but honest as I'm sure we could expect.
He was told that the brain doesn't feel pain, but it senses pain for the rest of the body. If you were to pinch Mom, she would feel it, but only because her brain told her body to feel it.
As this progresses, her brain will slowly lose the function to sense pain for the rest of her body.
He was told that most patients pass while they're sleeping, or they at least pass quietly, and that it isn't painful.
But what about the weeks and days before that moment?
Well, that is yet to be determined, but again, there are statistics, and every person is different. We will take things one day at a time and give her as much comfort and reassurance as we can.
On Thursday, the Fourth of July, I spent about 3 hours with her & Dad.
I sat through her therapy, in both awe and disbelief at what I was seeing. I was so proud of her, as I would be watching my own children accomplish things they couldn't just a few weeks before. But I was also sad. I was viewing my mom as "childlike". I tried to chalk it up to the cycle of life. Aren't kids supposed to care for their parents in later life? Isn't that the natural cycle of life? But this was different. She's not 90 years old. She's not even 60 yet. This monster has come and stolen my mother's personality and most of any resemblance of the woman I used to know. Sure, we see glimpses now & then, but overall, she's just so different.
We talked about the rough week she had had with her seizure and all the crying she did.
She understood what happened, but it was all a fog for her. She was on so many medications, that trying to remember was near impossible for her.
She kept saying that she felt "foggy" and she didn't want to be so "foggy". She wanted to think clearly, and to be able to enjoy things like she used to. She was looking for a moment of clarity.
So I gave her one.
I recently became engaged, and I hadn't shown her my engagement ring yet. So, I walked up to her and held out my hand to show her.
She gently grabbed my hand, held it to her face, and started crying.
Happy tears.
Finally!
And then she didn't let go.
I sat next to her and her gaze went from my hand to my face, and back. She said she was so happy for me, and it was everything she wanted - just to see me happy.
We held each other for a few minutes, and she wiped her tears. She loved that moment.
And so did I.
Well, the seizure had also postponed her chemo consult with her Oncologist.
And her homecoming.
So we looked for little things coming up that she could be excited for.
The next day, July 5th, she came home.
Home.
For good.
For now.
As she got used to the comforts of home, she also had to learn how to get around, and be more independent than she was used to. She has her best friend there with her every day to assist, but each day she made progress. Big or small, it was all progress.
She made some meals by herself. She carried her coffee through the house, walking unassisted. She gets up and gets what she needs from the kitchen without help. She goes outside to sit on their shade porch for fresh air.
Either her best friend or Dad takes her for walks every day to keep her blood flowing, and to help her get some fresh air. This also helps to keep her somewhat limber and alert. Plus, she loves the outdoors. And she can play frisbee with her dog - a pastime she has always loved.
Last week, she had her chemo consult and they decided to start her chemo on the 23rd of July.
After the consult, Mom said she felt like she has some hope and something to live for. Not just a death sentence.
She also got fitted for her mask for radiation:
As the temperature rises (heat index over 100 degrees) in the heat of summer, Mom and Dad don't have Air Conditioning. Dad also told me that their refrigerator quit working, and they were reduced to using the spare, smaller one in the basement. Dad's lawn needed to be cut (the neighbor had done it for him the week before), and when he went to use the vacuum, he realized it was broken. He had a mountain of bills to scour through - most had been opened, some had not. They come in droves these days; too fast for Dad to keep up with. Here's the link to Mom's Fundraiser, should you feel the desire to help financially.
He was having a very rough week, to put it mildly.
Each day, he goes to work and comes home to the huge stack of bills that keep coming. He assists with Mom to give her best friend a break. There's information overload, appointments to make, and keep, phone calls to make, and return, dinner, laundry, and conversation with Mom that is repetitive and sometimes exhausting... when you're already beyond exhausted.
He does it all with a smile, and wakes up the next morning to do it all again. She is his best friend in this whole world. She is his life partner, his beautiful bride whom he loves and cherishes more than anything. No matter the circumstances, he will love her and care for her until the end.
But Dad needed a break too.
My fiance went to the house on Friday to mow Dad's yard and touch up the landscaping a little. While he was there, Mom's best friend told him that Dad could really use a break and asked if there was anything he and I could do to help out.
So on Saturday my fiance and I took Dad golfing. We didn't give him the option to say no, or to tell us that he had things he needed to get done.
We started with 9 holes. We didn't talk about Mom, or bills, or work. We just laughed. We had a few beers, enjoyed the amazing weather, and let Dad take a load off.
9 holes turned into 18. We had so much fun! It was SO good to see Dad laugh and enjoy himself, and us - something - as we hadn't seen that in a while.
I'll admit I was sad when we dropped him back off at home. I was sad because he had to go right back to his "new" life. I feared he was beginning to resent his situation. We had so much fun, but he had to return to reality. I wanted so badly to take him away longer.
But he was happy as a clam. The reset button had been set, and the next time I spoke with him he had organized the bills, made phone calls and taken care of some things he hadn't the energy to do before.
Someone had anonymously sent them a room air conditioning unit. He said it brought the temperature in their house from the 90's to the low 80's.
He also shared with me that Mom's latest MRI had shown some tumor regrowth already.
So they started chemo and radiation a week early.
Mom is now walking with a cane so that she doesn't have to hold the walls to get around. This is a little more freedom for her.
So she will do 30 days of radiation and chemo. And another "new" routine ensues.
So far, she has not felt any ill effects of the treatments. This is wonderful news!
Her goal is to make it to my wedding... on her birthday - August 1st of this year.
We chose that date for many reasons, but the fact that it's on her birthday and she will be able to come is an extra blessing.
After the wedding, we will have new goals for her. Daily goals, weekly goals, and longer goals.
I have some projects up my sleeve that I'm going to give her this weekend to help keep her busy and involved in the planning of the wedding. I know this will bring great joy to her, and also help her stay task-oriented. It will help prevent her from wallowing or feeling "foggy". It will help to give her some purpose.
Amidst the storm, we have seen the sun. We have been amazingly blessed... and the blessings keep coming. Our family is overcome with emotion and gratitude to the people who have blessed us with a hand (or an air conditioner), time, kind words... everything.
Life is short. Life is precious. We are smelling the roses, although the ride won't stop to let us off. We will continue on as we have been, but please know that we cannot do it without the love, support and prayers of everyone out there who can't be here.
All I can say is "Thank You". From the bottom of my heart.
Thank you.
