Cancer Update 3/16/19

This is an update on my husband’s brain tumor. As a recap, he had a seizure 44 days ago, on January 31st. His first, and only so far. We were taken to two hospitals by the paramedics and after three days of various cat scans, MRIs and finally a brain biopsy it was determined that he has glioblastoma multiform and was given 18-24 months to live with treatment.

We have since found out that it is a wild style tumor which means it’s the most aggressive form of cancer our neurosurgeon has ever seen. It grew from 1.5 inches at the time of his seizure to 2 inches 19 days later when they took another MRI to finish plotting his radiation treatments.

Depending on which of his doctors you talk to the treatments he is having could do anything from nothing at all, to slowing the growth, to shrinking the tumor.

So far he has had 13 of 33 radiation treatments and 18 of 42 chemo pills. Until this past week the only real symptoms of treatment he was experiencing were being tired all the time and being hungry all the time.

This week though we ended up with a more visual reminder of his oncoming death. He began to lose his hair from the radiation. We both took it poorly. Neither of us are attached to his hair, but for me, when he looked normal I could keep the panic at bay and sometimes even forget that he was dying before my eyes for minutes at a time. Now whenever I look at him I’m hit in the face with a reminder that I’m losing my husband and best friend, probably soon. It kills me over and over every day.

Today we’re going to the girl that has cut his hair longer than I’ve known him to let her take his hair off all the way so we don’t have to slowly watch him lose the rest of it all over the house.

We have no idea what size his tumor might be at this point. They will do another MRI in a month or so when his treatments have ended for this session. We just don’t know what to expect next or how much time to really hope for. Right now life is lived minute to minute focusing only on the exact next thing I need to accomplish. I don’t know how to live it any other way.

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Good Bye Birthday Month

This is the last post for birthday month. I somehow managed to keep up with a goal I made before my husband was diagnosed with terminal brain cancer. Because my life was permanently changed just days before this month was due to start a lot of the posts I had planned to write were forgotten about. A lot of things that were important before just aren’t now. Other posts were kept in only because they were fairly simple to write to keep me on target for the 28 days of posting.

I posted 30 times this month. I also posted about more personal things than I have before. That seems to happen when your world crashes down around you over and over again. Sorry book lovers. Back to largely bookish content from here on out. An occasional life update is sure to be included too.

I gained 18 followers. Hello new friends!

I think the most important thing this month gave me though was a small task each day that I could accomplish and keep my mind off of everything else going on in my life for a few moments.

Thanks to everyone here that reads my posts and leaves likes and comments. You’re helping more than you think to keep me going during this horrendous time in my life.

Thank you!

See you on Tuesday, Thursday, and Saturday again from here on out.

My Birthday Interview

It’s almost the end of birthday month and somehow I’ve managed to keep up with a post every day even with the craziness that is my life right now. I’ll be very glad to be back to only three posts a week though.

Today I thought it would be fun to see what my answers are to the birthday interview sheet I had my daughter fill out for her birthday this year. I’ll tell you her answers at the end too if you are interested.

Name: Lori

Age: 32

Favorite food: Pizza

Favorite color: Blue

Favorite show: Golden Girls

When I grow up I want to be: Someone that gets paid to read books and drink coffee.

I like to play: Cards against humanity. We haven’t been able to play since the baby started talking

My favorite book: The Gentleman’s Guide to Vice and Virtue

My favorite restaurant: Red Lobster. I totally copied the kiddo on this one. I don’t have a favorite.

My best friend: My hubby

My favorite cartoon: Sid the Science Kid

My favorite place to go: a book store, but there should also be coffee and an unlimited budget.

 

My four year old’s answers-

Name: Pepper

Age: 4

Favorite food: happy face fries

Favorite color: yellow

Favorite show: My Little Pony

When I grow up I want to be: A doctor

I like to play: Paw Patrol

My favorite book: The Princess in Black

My favorite restaurant: Red Lobster

My best friend: Jayla and Baby Ty Ty

My favorite cartoon: My Little Pony

My favorite place to go: the library

 

Do you have a favorite restaurant? Favorite book? What do you want to be when you grow up? These are a lot harder to answer now then they were when I was a kid.

 

Gratitude When Everything Sucks

Our lives suck right now. My husband is dying. He has stage four glioblastoma multiform. Everything we’ve heard says this is basically the worst possible brain cancer you can have. Also, it’s so deep in the brain that it can’t be operated on. He probably won’t live long enough to see our four year old turn six and we should consider ourselves lucky if he’s still with us for her fifth birthday next February. In the mean time, trying to keep him alive long enough for a miracle cure to be discovered, we’re at a minimum of 6 appointments a week to pump him full of poisons that might make him live a little bit longer. Every day is hard and terrible. There are new challenges being thrown at us at every new appointment. I, in particular am having a really hard time keeping going.

I’ve thrown myself in to making as many memories as we can. One way we’re keeping memories for later is with a family gratitude journal. Each day the three of us each choose one thing we’re grateful for.

This is the journal we’re using, but any notebook would certainly work. I liked this one because it wasn’t too expensive, it was cute, everything was set up for us already, and it wasn’t religious. IMG_20190215_204521

We’re only on day six, but I thought it would be interesting to look at the kinds of things we’re grateful for at this point in our lives.

Our four year old knows daddy is sick, but not that he will be dying soon. We’ll tackle that talk when we get closer. Her birthday was the third day we were participating in the project. The things she has been thankful for so far are:

  • her first grade geography book
  • her lego birthday
  • her computer
  • wonder woman
  • her computer (again)
  • her ball

My husband is 42 and going through chemo and radiation. He was given 18-24 months to live. The things he has listed so far are:

  • waking up
  • sleep
  • all the people that love him
  • food
  • having no staples in his head
  • naps

My list looks like this:

  • No panic attacks on phone calls in almost two weeks
  • phone calls I don’t have to make
  • so many giggles
  • Abbiewritesx (she is amazing)
  • Daddy uppies for Miss Pepper (he wasn’t allowed to pick her up for almost three weeks)
  • Being Pepper’s best friend.

It’s especially hard for me to think of something good sometimes, but we’re encouraging each other to come up with something even if it’s silly. Thinking of something good each day means at least once a day, even if only for a moment, we’re thinking of something that makes us happy and grateful. That’s been a small bright spot amidst the chaos and terrible that we’ve been going through.

What are you grateful for today?

Brain Cancer Update

At the time this blog goes up we should be on the way to my husband’s neurosurgeon, an hour away. He will be removing the staples today from his brain biopsy.

Following this appointment he has an MRI tomorrow. And another appointment the following day for some more blood work. And he should also be starting his chemo pills and radiation treatments on Wednesday.

It has been an unbelievably horrible two and a half weeks for our family. We’re finally getting treatment started to hopefully prolong his life.

The glioblastoma multiform my husband has been diagnosed with has left us with very little hope in general, but he wants to at least try the treatments offered no matter how bad they are. I can’t say that I would do the same, but I’m here to support him in whatever way I can for his decisions.

Every doctor appointment we go to they give me more responsibilities and more to worry about, now and in the future.

We have a minimum of six appointments a week for the next seven weeks of treatment. There will certainly be others thrown in there too. The sheer amount of phone calls and paper work and scheduling is totally overwhelming for me. I feel like I’m hanging on by a thread some days.

I didn’t lose my husband when we were in the hospital and I’m so grateful for that, but I did lose a big part of him and of my life. Currently he can’t do anything. I can’t send the kid to him to change a diaper because he can’t lift over five pounds. I can’t have him take care of dinner like he always did. He can’t even take a shower on his own until the stitches are out. He can’t clean. He can’t drive. I can’t drive either because of my cataracts. To get to an appointment or leave the house at all we need at least one of our parents, sometimes two; one to stay with the baby and one to drive us to whichever doctor we need to see that day. My workload doubled and then some.

My husband is doing well, all things considered. He has his sad moments where it hits him that this might be the last birthday he gets to see for our daughter or when he thinks for too long about not getting to see her wedding or our grandchildren. But he still has some hope. Somehow.

My hope vanished on that third day in the hospital when they told me he had inoperable brain cancer and he would be dying soon. 18-24 months if we’re lucky and he has all the treatments they order for him.

Our four year old knows all of the words. Daddy has brain cancer. He has a tumor in his head. It makes him tired and dizzy. He has to go to a lot of doctors appointments and take lots of different medicines. We’re hoping he won’t have another seizure, but we can’t be sure. The only thing she hasn’t been told is that daddy will be dying soon.  We talk about death. But never in relation to our circle of people we can’t imagine living without. We’ll tackle that bridge when we get closer.

For now we’re making the most of every minute we have. I’m cataloging as many memories as I possibly can. Pictures of them together every day. Videos of him reading to her or of them playing a game together. Family gratitude journals. Rings with his handwriting on them. Creative projects that we complete together. Books of love notes for each of us. I’m trying desperately to capture as much of him to keep with us as I can.

One step at a time is all we can do right now. Whether we have him for another week or another decade or longer I’m helping my little family make as many memories with him as I can.

 

Q & A A Day For Moms

Image from Amazon.

I received this journal for Christmas 2016. It has one question for every day of the year and you answer that same question on that same date each year for five years. I began it on January 1, 2017. The beginning of the book now has three years worth of answers. I wanted to share some of the questions and how the answers have changed over 2017, 2018, and 2019.

The question for January 3rd is a fill in the blank sentence. I love seeing my child____________.

2017: Laugh. Giggle. Be happy. Be sweet. Get excited. Succeed.

2018: Learn

2019: Read. Sleep. Listen. Take care of other children.

January 5th. What’s something you’ve done for your child that you never imagined you’d do?

2017: Get hit when she tantrums and still love her and snuggle her when she is finished.

2018: Make separate dinners.

2019: Spend hours cleaning up the messes she makes.

January 7th. What’s a smell you associate with your child?

2017: Johnsons and Johnsons nighttime bath soap

2018: Salt and Vinegar

2019: Chocolate

January 9th. I was in awe of when my child___________.

2017: Ate lunch out two days in a row with no complaint or drama.

2018: Said her name!

2019: Read The Princess in Black all by herself.

January 12th. I’ll be honest: ___________drives me crazy.

2017: Whining and hitting

2018: Whining and tantrums

2019: Whining and not being listened to.

Clearly whining is still an issue in our house.

January 23rd. Tomorrow I will ________ because I know it will make _________ happy.

2017: color, Pepper

2018: Sing, Pepper

2019: Act silly, Pepper

I love to make that girl happy.

January 31st. What are your three most recent kid-related purchases?

2017: Stickers, waterproof matress pad, toy flowers.

2018: Mommy and me tutus, books, shopkins.

2019: chocolate, Madlibs Junior, burritos.

February 2nd. What’s a favorite book right now?

2017: Daddies do it Different

2018: Feminist Baby

2019: The Princess in Black

February 11th. What makes your kid, your kid?

2017: Her brilliance, her sweetness, and her temper.

2018: Her sass and her kindness.

2019: Her amazing kindness and thoughtfulness.

I am loving reading these questions each day. It gives me a minute to reflect on something about my or my daughter’s life that I might not otherwise have given any thought to. It’s also fun to look back on my answers from previous years. I often think “that was only a year ago” or “I had forgotten about that entirely.”

Do you use any question a day type journals? I’ve had others in the past, but this is the only one I’ve stuck with for this long. Though to be honest I sometimes find myself filling in a couple weeks at a time.

 

Valentine’s Day Traditions

Happy Valentine’s Day! This was always my favorite holiday until I had my daughter. Now my favorite holiday is Christmas. I think Valentine’s Day was my favorite because it falls the day after my birthday and because it is a day to tell everybody how much you love them.

Growing up “I love you” wasn’t a phrase you often heard. With my husband, daughter, and I, we say it spontaneously throughout the day every day and Valentine’s Day is a little less special because of that. Not that I would change anything about how frequently we all profess our love for each other. Knowing there is an immense amount of love in our family is something we will never doubt.

Our first Valentine’s Day together was the only one my husband bought me an expensive gift. He bought me a heart shaped necklace with my birthstone and diamonds. I loved that necklace. The stone fell out sometime during my pregnancy. I was so crushed. Aside from that first Valentine’s Day where my then boyfriend was trying to impress his girlfriend of nine months, our holiday is pretty low key.

We tend to really do Christmas and Birthdays in a big way and everything else is pretty small and just filled with love instead of things.

This year I purchased our gifts. My daughter is getting a rubiks cube like daddy’s. And my husband is getting a 2x2x2 rubiks cube. He has the 3x3x3 figured out. They are also getting thumb chucks. A toy like begleri, which my husband and I both play with and collect. The thumb chucks are bigger and they light up. I am getting a bookmark for my collection. And we’re all getting a doodle book. Like this. I found three different kinds at Dollar Tree. My daughter will get Happy, I’ll get Stressed, and my husband will get Grumpy. Not because he’s grumpy, but because that’s what is left.

Ordinarily we might also have a date night. This year with money so tight we were going to go out for coffee and bagels. However, my husband was diagnosed with brain cancer two weeks ago today and he is no longer working at all so money is even more tight. Also, we can’t drive. I can’t drive because of my cataracts. My husband can’t drive because of the seizure he had that led us to discover his brain cancer. So without transportation from one of the various in laws we’re trapped at home. And the in laws are here to watch the baby or take us to between five and seven appointments a week with various doctors at this point. We won’t be asking for extra transportation for coffee this year.

So this year, Valentine’s Day plans are to have a normal day at home, just the three of us. We’ll open our gifts and cards and love on each other as much as possible. That’s good enough for me.

 

How are you spending your Valentine’s Day?