Room 1009

Yesterday afternoon at about 2:00 Bev Lindholm passed away.  I don’t want to say that she lost her battle with brain cancer because she gave it one helluva fight.  In the end she knew that all of us were taken care of and that she didn’t need to worry.  She died peacefully with her husband and daughter at her side.  We had hoped that she would survive until Wayne (my BIL) and Diana (her sister) arrived, but we spoke to both of them and they were at peace that they weren’t there.  Dad told Mom not to worry about us and that it was OK to go.  With that she took two long last breaths and made her way home.  She joins of myriad of family who welcome her with open arms.

Bev was a woman who was larger than life.  In the car on the way to Olympia yesterday I asked my friend, Kerstin, “how does Bev Lindholm die?”  She was one of those people that you thought would live forever.  She was the person you called when you needed help with something.  She was the person you called when the world had beaten you down and you needed to be lifted back up.  She was the person that told you you can do anything you want.  She was your strongest cheerleader.  She was a wife, mother, daughter, aunt, sister, grandmother and friend.  She was a mentor, music director, teacher, spiritual advisor, comedian and pro extension chord destroyer.  Most importantly she taught me how precious life truly is and to not take it for granted.  She left behind her partner of 53 years, 3 strong children who grew up to be amazing adults, 2 children-in-law that she was so kind to allow to marry her children and 2 beautiful grandchildren who will always know how amazing their Grammy was.

I am going to miss her deeply, but I am happy that she is at peace.  So we close the door on room 1009.

Mom is home resting comfortably surrounded by her family.  Liese (my sister-in-law) and Bethany (my neice) arrived Thursday.  Uncle Tom & Aunt Jan (Mom’s brother and sister-in-law) arrived last night.  Wayne (BIL) comes Sunday morning and Aunt Diana (mom’s sister) arrives Monday.  We are hoping that she will survive until everyone is able to come.

She is in the final stages of life and while it is difficult to think about we are at peace.  We are doing what Mom would want.  Remembering, preparing and laughing.  Last night the children played and the adults took time to discuss final preparations, all the while mom snored loudly from her bed.

The hospice care providers have been fantastic and very comforting to everyone at the house.  I’ve spent most of my time this week with the distraction of work, but the boys allowed me to leave a little early last night to go be with my family. I am so thankful they did that.

I appreciate the words of support.  Thank you to those who have stopped by the store to give a hug or called to check in.  We feel so blessed to have such a large network of friends.  Mom would like that too.

Yesterday Derek and I went to the hospital to see Mom and to visit with Gretchen and Dad.  Mom was scheduled for a stress test to check on her heart function so she would be gone most of the afternoon.  While she was out we grabbed some lunch and waited at the house instead of the tiny hospital room.  When we returned to the hospital Mom was just coming back from her test and Dad said she was alert and talking.  We (the kids) had been waiting in the consultation room while they got Mom moved back to her bed and such.  As the nurse was getting her situated and hooked back up to her monitors a doctor came in.  We weren’t expecting a doctor since the nurse didn’t mention it, she said that there were no more tests scheduled and that we wouldn’t know the results of the stress test until tomorrow (today).  The doctor that came in was a neurologist.  Ok, we were on the cardiology floor, but if this doctor might give us answers (and while most of us were there) then exam away doc!

He asked us a bunch of questions about Mom’s condition and the changes we’d seen over the past year and especially since surgery and post-radiation*.  We answered his questions to the best of our abilities.  The doctor then proceeded with a neurological exam.  When he asked her how old she was you could see the wheels turning in her head.  I could hear that she was trying to do the math to figure it out… “nineteen… (in a muffled voice).”  She couldn’t come up with it.  He asked how long she’d been in the hospital… nothing.  Tell me about your trip to California…nothing.  Dad asked, “who lives in California?”… nothing.  He asked her to repeat some words.  She couldn’t.  He asked her to raise her arms.  She couldn’t.  He asked her to lift her feet.  She couldn’t.  He asked her to smile.  She DID… begrudgingly.  She could grasp his hand with her left hand and push on his hands with her left foot.  She could feel and express pain when he scratched her hand with the end of  swab stick.  She could not identify the color of the comb.  She could not tell him if she could feel the tuning fork on her legs or head.  She will only answer questions from family members and completely ignores nurses and doctors.

After the doctor finished the exam he showed us the MRI images.  Derek, Gretechen or I hadn’t seen the images.  Dad had, but when he saw them the doctors were focusing on the tumor.  All this time the focus has been on the tumor.  The size of the tumor, what was removed, how much it had shrunk, what was dead… all about the tumor.  Never-mind that all around the tumor the radiation had caused gliosis.  Gliosis, put simply, is scar tissue around the nerves in the brain.  In an MRI it shows up as a light grey area.  It is pretty pronounced in Mom’s images.  The gliosis is advanced.  There is no treatment or cure for gliosis.

The doctor said a lot of words.  He wasn’t beating around the bush, but he wasn’t getting to the point either.  Finally I got tired of that and ask him to put it simply.  Mom’s condition is because of this gliosis.  The gliosis is a result of the radiation.  There is no treatment or cure.  The state she is currently in is irreversible.

 

 

That is not what we were expecting to hear yesterday.  For the past week we’ve been worrying about a possible heart infection or some other cause to this.  Nope, it is all the cancer and its after effects.  In a way this is a bit of good news.  I’m not sure about Dad and Gretchen, but Derek and I are relieved to know that it wasn’t something that we could have caught sooner.  It wasn’t an infection that could have caused this.

But it’s irreversible.

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*a little bit about the post-radiation effects can be found here, but there is much more to the story.  Since the end of January Mom has continually declined.  Her appetite has gotten worse, her cognitive ability has declined and her mobility is nearly non-existent.  Last Tuesday she could raise her arms to scratch her nose, yesterday she could barely do that.

It has been an overly trying weekend around Room 1009 (which was room 3-something and is now 9-something).  So much has happened since last Tuesday that I’m going to totally reference emails my sister-in-law has sent out.

Here is what we know.  They performed another MRI on Thursday to make sure that there was no change with the tumor.  The good news is there has been no change.  That is about the extent of the good news.  The doctor also ordered a spinal tap to rule out encephalitis and meningitis.  She does not have bacterial meningitis.  However, they did find protein from the lumbar puncture indicating an infection, but they don’t know where yet.  Saturday she was moved to the cardiology floor because of some concerning heart issues.  She had elevated blood pressure and heart rate along with elevated enzyme levels.  Over the weekend they were finding blood in her stools and gave her some medicine to help calm her stomach and it appears as if the bleeding has stopped for the time being.  Saturday night she all but stopped swallowing.  She couldn’t swallow pills or water so they are having a feeding tube put in today.  She has also stopped talking beyond yes or no.

The radiation oncologist came in to see her and she believes that all of this could just be a result of the rebound that she’s been going through.  She said that some people come out of it and some don’t.  The “some don’t” is what’s concerning all of us.

Derek and I are (hopefully) headed to the hospital today.  Derek has been called for jury duty and his group was to report this morning.  He was going to talk to the jury administration people to see if they will excuse him for the duration of his two weeks.  This poor man cannot honestly concentrate on a jury case while his mother is in the hospital with complications from cancer.

The three of us are trying to be strong for the family and each other, but it is starting to take its toll.  My anger with God is welling up again.  That may not be the healthiest reaction, but right now it’s all I’ve got.  One of my best friends has been laying in a hospital bed for the past week with no sign of improvement and all signs are pointed the other way.  I’m angry, sad and feel helpless.

I certainly have a list of things to not be thankful for this year.  Big fat CANCER being one of them.  Cancer sucks and there are no two ways about it.  However, cancer has done one big giant thing for me.  It has made me stop and re-evaluate life.  I’ve said it before and I’m sure I’ll say it again, I look at each day as the here and now and I am thankful for the one small thing that is good each and every day.  There are 365 days in a year (sometimes 366) so that is a lot of things to be thankful for.  Here are a few.

1) We will be sending at least 72 separate orders of candy to people all over the United States.  This doesn’t take into account the lives that will be touched by the gifts of candy you give to others.

2) We reached our $4680 sales goal and blew past it.

3) We currently have over $6100 in sales.  There are still 2 more days to order.

4) I get to spend my Thanksgiving with my whole family.  Lee, Wayne and Bethany were able to come for Thanksgiving.

5) I get to celebrate Thanksgiving with my Mother-in-law (and the rest of the family too).

6) Today is her birthday.

7) Her treatment has not made her sick or tired yet.  The only thing she’s sick and tired of is having no hair and being cooped up in her house.

8) I have a job with the most wonderful bosses in the world.

9) I have a husband who is so loving and supportive of all the crazy stuff I do.

10) I have a son who makes every day worth it.

Happy Thanksgiving to all of you.  Thank you for your support of Sweet Hope.  There are a whole bunch of children on the other side of the world that thank you too.

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I did not intend for that sunglasses smily to show up on #8 but it seems so fitting now.

I want to take a moment to address some feelings.  I guess over the years this (and former) website has become a sort of therapy.  A place where I can get things off of my chest.  I’m married to a Swedish man and they aren’t exactly known for being touchy feely and talkie about things.

While my mother-in-law is still alive I still am mourning a loss.  My sister-in-law said it best.  “I cried, mourning the loss of that mom but treasuring (every moment) of the mom we still have.”

You have to know Bev Lindholm to truly grasp what that means.

She has been my mother-in-law for over 14 years.  She has been like a mom for nearly 20.  This is never to diminish my own mom, but Bev was there when my immediate family was going through hell.  Bev became the person I called for help.  If I was sick she was the one I called.  If I was having problems with Oleg, she was the one I called.  She was my pinch-hitter babysitter.  She helped me make decorating choices.  She went shopping with me.  She was truly one of my best friends.

I say all of that with a past tense.  Like I said, she IS still alive.  She just isn’t quite the same.  I can’t call her to ask for help, I can’t trust that she’ll remember a conversation we had 15 minutes prior.  I can’t trust she’ll remember an event that happened 3 years ago.  While the memory loss has been occurring over a span of 6 months it was like a switch was flipped and the mom we knew was gone.  Her memories may never return.  Her beautiful handwriting that addressed my wedding invitations may never return, she may never be able to play Christmas carols on the piano while the kids sing, she may never be able to do the things that she wished for in her retirement.

I know that I still have the here and now with her.  I am thankful for that.  But I won’t pretend that I don’t mourn the loss of the mom I once knew.  My confidant, my friend, my mom.

It makes me angry and bitter.

I thought I’d take a moment and update the happenings in the Room 1009 set.  Obviously we are no longer physically in Room 1009, but for the sake of this website that’s where I wish all of this would stay.

Mom was able to go home on October 28th.  While we wish that life would be peaceful and quiet for her in her own home, that isn’t always the case.  Mom was quite the active woman and very involved in just about everything.  There have been so many people who want to stop by to visit with her and she is not usually one to turn people down.  Mom and Dad are both thankful for the love and support they have received from everyone in their community.  We are also thankful for their help since none of the kids actually live in the same town as they do.  Derek and I are the closest, but even still we are 30 minutes away.  This has been difficult on Liese since she is the furthest away, in California.  Luckily her whole family will be able to be here for Thanksgiving and Christmas so we can celebrate all of the holidays as a family.

So how is Mom doing?  Given the circumstances quite well.  Some days are better than others.  She feels perfectly fine with the exception of the incision site gives her a little bit of pain and her head itches like crazy.  The thing she struggles with the most is communication.  Conversations with her are either really good or downright exhausting.  The tumor is situated on the language and memory centers of her brain.  She has very little short term memory and her ability to recall her long term memory is hit and miss.  She says if she takes the time to really think about something it might come to her.  But that could take upwards of 20 minutes or never.   She has difficulty forming real sentences and often cannot get words to come out correctly.  That all is depending on how tired she is.  Last Saturday we held a very in-depth conversation about her treatment.  Sure some things were repeated, but I didn’t walk away from it exhausted.  However, Tuesday she got stuck on a question someone had asked her in which she should know the answer, but couldn’t even remember the word drum.  She kept calling it an instrument or “thing you make music with.”  She says that is the most frustrating part of all of this.  Not being able to access information she should know the answer to.

She will also repeat the same question multiple times in a short time span.  Dad was gone for about 45 minutes and she asked me about 7 times where he was.  This is part of our life now.  Her ability to hold onto that type of short term memory is not likely to come back so we will go on repeating as many times as she needs us to.

I mentioned treatment.  Treatment starts today.  Today will shape the next 42 days for her.  It will also give us a clue as what to expect for the next year.

Mom has Stage 4 Glioblastoma Brain Cancer.  There is good news and bad news with this kind of cancer.  The bad news is that it is a fairly aggressive form of cancer.  It likely grew rather rapidly over the past 6 months which is why her symptoms progressed so rapidly.  The good news is that this type of cancer does not spread to other parts of the body.  It is also a highly researched form of cancer with specific treatment protocols.

Today (11/11) Mom will go in at 11:00 a.m. for her first round of radiation.  She also starts chemotherapy today.  She will be taking Temodar at home.  The radiation is 5 days a week for 30 treatments.  She will go with that until the 22nd or 23rd of December (depending on if she has treatment on Thanksgiving or not).  She will take the Temodar 7 days a week for the 42 days.  Once that is finished she will have yet another MRI on February 16th.  They will then double the dose of Temodar (assuming she is reacting well to it) and take that for another 2-3 months one week a month.  After that, they will up the dose again and she’ll take that one week a month either until next November or for a year.  I’m not sure which it is.  In either case, it is a long road ahead of us.

With any luck she will have minimal side effects.  However, we are preparing for the worst.  She has no expectations going into this so that is a good thing.  She won’t be disappointed if she reacts badly, but she’ll be pleasantly surprised if she does well.  The big thing is that she really isn’t terribly afraid of any of this.

We have a prognosis from the radiation oncologist, but I’m not sure I want to share.  I don’t want to think in terms of timelines or what’s left.  I have today with Mom and that is what matters.  She and I take the time to laugh and enjoy the moments we have here and now.  I look for the one good thing each day and that is all that matters to me.

So send some good thoughts to her today at 11:00 (pdt).