Thursday July 18, 2013
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.
Wednesday June 19, 2013
I went to visit Mom today at Saint Mary's Rehabilitation Hospital.
I have to say that the second I walked in I could tell things were... different.
Before I get into today, let's see if I can manage some chronological order here:
Friday June 14 was her first day there.
The folks at my work were kind enough to let me work from Dad's house that day so I could do some laundry for them and bring up a fresh suitcase of clean comfies for Mom, as well as do anything around the house that needed to be done in preparation for her return.
Mom was being transported from Novi via ambulance, which is standard procedure for this sort of thing, and I decided I wanted to meet her & Dad at the hospital when they got there. I knew she was scared. I wanted her to see familiar faces when she arrived.
I spoke with her sisters throughout the day and asked them to meet us there as well. I felt that Mom would need all the love and support we could muster when she arrived.
So when she got there, we could tell immediately that she was exhausted, and very hungry. She kept referring to her ride there as one being in a "really big truck". Like, semi truck. We told her it was an ambulance, but she insisted it was a "really big truck". She slept most of the way there, and was probably pretty groggy.
None of us had seen her since she was admitted back into Novi the week before (Read that post), so we were all anxious to speak with her and find out how she was feeling and doing.
She was not allowed to get out of bed without a nurse. Under no circumstances was she allowed to do anything without a nurse present. She is a "fall risk".
We spent most of the late afternoon and evening there with her.
We met her doctor.
We asked a lot of questions.
We got answers to most of our questions.
Basically, she is in rehab for many reasons.
To learn to cope with her health condition, and the realities of her new way of life (mental rehab).
To learn to cope with her deficits from the tumor - surgery, brain trauma, and brain cancer - (physical/speech rehab).
To learn to be independent again, but differently than before.
To learn and understand how to live with this type of cancer, and the treatments that were to follow.
Rehab isn't just for her either. It is for us, her family, as well. We need to learn how to speak with her in a way that she can answer. We need to learn what her deficits are as well. We need to learn how to let her be independent; what she can do, and what she needs assistance to do.
We learned many things that first day.
We learned that her simple math and number knowledge had diminished. For example, her doctor drew a circle on a piece of paper. He then asked Mom, using the numbers 1-12 to draw what she thinks a clock would look like. She did her best, changed some things around a little, and like a school girl, proudly handed the "clock" back to her doctor.
The number 12 was where the number 9 or 10 would go. 1 was at the top where 12 would go, followed by 2, 3, and 4. After number 4 came number 7, and so on.
But man, was she proud of herself!
We learned that tasks, and the different steps we take to complete those tasks, were going to be difficult for her. She needed to remember how to do things, in which order, in order to complete tasks. Taking a shower, for example, and which steps come in which order. Making a sandwich, getting dressed, daily routines. These were all processes that she could see complete in her mind, but could not determine the order in which to take the steps to complete them.
We learned that certain parts of her memory were being challenged. They aren't gone, they just need some prodding to come to the forefront. She gets stuck on words. For example, she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat. (More about this later in the post).
We learned about her cancer. We learned more about the tumor, where it was located (Left Parietal Occipital), and which functions that part of the brain controls.
We learned which medications she's currently on, and which ones they will add or take away in the coming weeks.
It was a very emotional day.
Mom was exhausted and extremely emotional.
Dad was exhausted yet still being the rock that he is for her.
Her sisters and I were emotional (privately) yet optimistic and carried the mood in the room - so Dad didn't have to - and made sure that Mom knew that she was safe and in good hands.
The next time I saw her was Sunday afternoon (Day 2). She had had a full day (3 hour chunks of rehab, twice per day) on Saturday and was pretty tired. I knew her first day would be exhausting, so I stayed away to allow her to rest when she needed to.
She seemed really good. She had come to terms with where she was and why she was there. She seemed in good spirits. Dad seemed rested and much better. We talked for a bit.
I asked her what she did in rehab today. She couldn't remember.
Then, I changed the question. I asked her if she read anything in rehab today. She said yes.
I asked her if she wrote anything in rehab today. She said yes.
Specifics. No open-ended questions. I picked up on that really quickly. She hadn't had her physical therapy yet that day, just speech, so I knew she hadn't done any walking yet.
When I left, I felt good. She was tired, but I knew they would tailor her therapy to her needs for rest. I also knew that they would push her to her limits, just so that she could see how far she is coming, each and every day.
My next visit was today. Oh boy what a difference three days makes.
Like I stated earlier, I knew the second I walked in that things were different today. She was eating her dinner, and I did not receive the warm welcome that I received for my previous visits. She barely smiled. Her answers were short and to the point. The conversation felt forced, completely unlike any previous visit I had had with her, anywhere, ever.
Dad and I talked shop for a bit (we both work in the same industry) while she finished her dinner. Then Dad asked her if she'd like to go for a walk in the garden. A walk for her consists of a wheelchair ride down to the garden. She cannot walk without assistance yet, and we did not have access to a safety belt, so she sat in her wheelchair, in the sun, and we talked.
She started to open up about the last few days. I read her activity log book that they keep. It shows daily activities (rehab) and the accomplishments she's made.
Dad had been there with her for her rehab session for half the day. So, he had many stories of goals she had met that day alone!
For example, there is this board in the rehab room. It's about 4 ft by 4 ft, and it's a touch screen with a backlight. Mom is in front of the board, and lights will appear randomly, in different areas on the board. When she touches the light, it registers her speed and accuracy with which she touched the light. Her first try, she touched 30 lights in 75 seconds. By the second try, she had knocked off 25 seconds from her time, with the same accuracy.
The next exercise was touching the lights, but this time they had letters in them. She was to touch the lights, and say a word that represents that letter. For example, the first light had the letter "A" in it. She said "Apple". Then the letter "D" showed up, she said "Dog". When the letter "C" showed up, Mom said "C3PO". Everyone stopped. Dad busted out laughing. The therapist had a confused look on her face. Mom says, "C3PO. Haven't you ever seen Star Wars? Duh!" And then continued on with the rest of the exercise.
When Dad told me this story, he was still chuckling! What a hoot!
She told the time today! This is huge!
Dad also learned (remember the "stuck on a word-can't remember which word she wants to say, from above?) that she gets frustrated when she can't think of the word she wants to say. Instead of sitting and waiting for her to think of the word, we need to help her think of it, and walk her through the thought process of recognizing words.
Using the example above, "she would say that she wants to eat an... an... ummm... uhhh... and then she gets very frustrated because she can't think of the word that matches the picture in her head of what it is she wants to eat." we will respond with questions. What color is it? What type of food is it? What shape is it? And she would respond with Red, a fruit, round, juicy... APPLE! Instead of being stuck in her frustration, she was able to think of the word she wanted, and move on.
Anyway, we spent some time celebrating her victories from the past few days, and all of the things she has learned. And then she started to loosen up a bit and began talking about how she had been feeling.
She is pretty depressed. She feels safe in the hospital "bubble".
She is scared to go home and leave her "bubble".
She is petrified about Chemotherapy and Radiation treatments. So much so that she won't even broach the subject. She knows that she will address this with her therapist, but nonetheless, she doesn't even want to speak of it.
She is frustrated with what her vision is of what she has become. She feels she's been "reduced" to something much less that what she was before she got sick. There's no amount of encouragement that will change this view I'm afraid. She sees us celebrating her victories, no matter how small or big. She doesn't see them as victories. She sees them as more battles. More shortfalls. More deficits.
She is speaking with a therapist on a regular basis, and she is being treated for this depression. I myself am familiar with depression, and I understand it, so I was not surprised to see this. I actually expected this to happen.
The three of us talked in length, but Dad and I mostly listened, without giving much input, to how she feels right now. We were her sounding boards. I think the things she is feeling are normal for this type of situation. Dad and I also expressed to her that we, as her family and caregivers, are struggling as well. We get upset seeing her sick. We get frustrated like she does. We have a hard time grasping all that has happened. When the lights go out and no one is around, all we're left with are our thoughts. As her family, it's extremely difficult to deal with. But as my dad put it so eloquently (HA!), we just fall asleep, and wake up the next day to do it all over again.
That's all we can do.
Over time, things will continue to change. They will get a little better, then get worse, then better again. It's the roller-coaster ride that we can't predict the next turn.
We will remain strong, and vigilant as we uncover what each twist and turn of this journey has to bring us.
As Mom rides this ride, sometimes so very lonely, we will remind her that she is NOT alone, and we are right here with her through every turn.
Here's the link to her fundraiser page Mom's Fundraiser. As you can imagine, the expense is already enormous given her
initial diagnosis (Never Give Up The Fight - post),
her heart attack (A Bump In The Road - post),
her surgery (Nothing Short of a Miracle - post),
her second admission post-surgery (Closer To Home - post)
and now a lengthy stay in a rehab hospital. If you can give, please do. If you cannot, please help me think of creative ways to raise money to help out - there are a couple of events already in the works. If you know of Foundations or Organizations that help those going through cancer, please send them on.
Thank you for your continued support. The prayers and well wishes do the most work, and are needed to continue.
May The Father place his healing hand on her now, and for the duration of this journey. Whether she needs it on her brain, her heart or her mind... may He heal her and make her whole again.
Friday June 14, 2013
Well this week has been exciting...
Not really. It's been rather difficult.
Dad took Mom to her post-op checkup in Novi on Tuesday. She had been regressing some in the days prior to the appointment, and he was looking forward to getting some answers about what was going on.
A CT scan at the appointment showed swelling on her brain. So much swelling that it had pushed her brain off-center a little. The left side had a hole where the tumor had been. Her brain swelled to fill that hole, and started putting pressure on the right side of her brain.
Post-surgery, she was taken off steroids cold turkey. Some patients can handle that, some need to be weaned. Apparently, Mom is one of the latter.
They promptly admitted her to the Neuro ICU. They immediately placed her back on steriods to try to gain control of the swelling.
Obviously, we weren't prepared for all of this! Dad hadn't packed any clothes or necessities for them to stay. He headed back home that evening to pack some things...
Over the course of the next few days, she began to get better - slowly. She saw Physical Therapists regularly. At this point, she cannot walk without a walker, her speech is ok, but just not what it used to be. Her eyesight has deteriorated - she cannot dial numbers on the phone, or text or type.
It was a waiting game to see if the swelling would begin to subside. And it did.
We had heard little from Dad while he was there with her. It was a whirlwind for him. Yesterday, I finally poked & prodded to get him to give me an update on her condition. Through tired eyes and exhausted fingers, he texted what he could, following up with a phone call.
Basically, this is what I learned:
She is now walking with the assistance of a walker. She needs continual rehab. Today, she is being transported to Mary Free Bed (the best) via ambulance for inpatient rehabilitation for an undetermined amount of time. We are told that chemo and radiation treatments won't start until swelling is down significantly, and rehab has improved her physical limitations.
Her symptoms should improve with time and rehabilitation.
Emotionally, she's on a roller coaster ride.
She is frustrated.
She is petrified.
I could hear the pure exhaustion in his voice. He sounded near defeat. Every now & again, I heard hope. He's still got it. He'll never lose it. One thing about my dad is he is a fighter. He never gives up. Never. And this is the most important, toughest fight he's ever had to endure. That's his best friend, his life companion, lying in a hospital bed. And he is helpless to take her pain away.
Behind her, he stands. Waiting to catch her, to carry her. And down the line, stands us - his family. Waiting to catch him. And even further stands our friends and loved ones, waiting to catch us. And so on... We will endure, we will stand firm with hope for one more day, tomorrow being better than today.
She will be in good hands the whole way. With the move to Mary Free Bed, she will be in the best place to get her well for this leg of the journey.
And she will be one step closer to home.
