After – 3 Years, 8 Months, 29 Days

It’s been a long time since I posted.  There isn’t a lot to report these days.  Which is a good thing.  My mom sold her house and bought a new one in a different state.  I have to admit I was not sad walking out of that house for the last time.  There were no happy memories there.  My dad got cancer 5 months after they moved in and then died there 10 months later.  Her new home is beautiful and just what she wanted.  She will be done with her LDS mission in February and will move right into the new home.

While cleaning out her house I came across many of my dad’s things.  It brought back lots of happy memories.  My mom downsized a lot so we acquired a lot.  My husband still asks why I brought random things home like an ugly 1970’s plastic cup or a container that held bulk laundry detergent. Because they remind me of my dad.  I smile every time I drink out of that stupid glass.

14238331_10211057132769980_6478606833553214460_n(This picture was taken over Labor Day weekend.  My mom just turned 70 and she rocks!  I want to be as cool as she is when I am her age.)

This will be our 4th holiday season without my father.  It does get easier, but I still find myself wanting to call and tell him something and then remembering I can’t.  I don’t imagine that ever goes away.

I think about closing down my blog but my numbers are still so high and I am still getting emails, so I hope it is helping others.  That is the main reason I started writing it.  I have seen a surge in my numbers, especially this last 6 weeks, which doesn’t necessarily make me happy.  That to me means someone new has just gotten the diagnosis and is searching desperately for any answers. It makes my heart hurt.  To you I wish you comfort and peace.  I am sorry you ever had to google the word Glioblastoma.

A New Perspective

Perspective –

a. The relationship of aspects of a subject to each other and to a whole.

b. Subjective evaluation of relative significance; a point of view.

c. The ability to perceive things in their actual interrelations or comparative importance.

I have written this blog from the perspective of a daughter, care giver, and loved one of someone going through the difficult journey of brain cancer.  I have only been able to express my feelings from this side of the experience.  The fear, anger, loss, heartache and loneliness that come from watching your loved one die a rather horrific death that GBM brings with it.  It was horrible. I hated it. I still hate it.  But these past few weeks I’ve gotten a glimpse of perspective of how my dad may have felt those 10 months.

Truthfully it has freaked me out and made my heart hurt even more for my father and his experience.  It has also given me a greater admiration for him. (If possible)

I have struggled with endometriosis and other “women” problems for the last 25 years.  It has been something I have accepted and learned to live with.  I have had 3 major surgeries and 3 c-sections. The last c-section was a scary as hell. We were lucky to have a healthy baby that only had to be in the NICU for 24 hours. I only needed 2 blood transfusions and an extra 2 hours of surgery with no internal damage.

It now has come to the point to where I have to have a hysterectomy.  Neither one of my doctors (one of which was my doctor for 20 years and who is who did 2 of my surgeries and delivered 2 of my babies) refuse to do it.  Her words “I wouldn’t touch that surgery with 10 foot pole.”   (Nothing like that statement to make you have a little anxiety.)   So I met with a specialist, an oncologist gynecologist, last month and scheduled surgery for next week.  She seems confident that she can do it.  She said it will be a difficult surgery and scheduled 5 hours to do it and made sure I was her only big surgery that day.  This is what she does.  Intricate, difficult gynecological surgeries. Mostly cancer patients.  So I know I will be in good hands. But even knowing that I have still been battling major panic attacks since we met with her last month and have wanted to cancel the surgery a million times.

Now to my point of this whole post. (Finally) In the midst of one my crying panic attacks I started thinking about my dad.  I thought about how scared he must have been knowing that his situation didn’t have even that possibility of having a happy ending.  His anxiety wouldn’t go away after his surgery.  He had to live with the fact that in the near future this cancer was going to kill him.

So then I felt like a big whining baby.  No wonder he cried every time he had to leave us or hang up the phone and say goodbye to me.  But what makes me feel like a bigger whanny baby is that my dad never said one negative thing about it the whole time.  He always said “It is what it is.”  He never had a pity party, never said “why me?”  although I’m sure he thought that.  He never showed an outward bit of anxiety to us.  This makes him even more amazing to me. Because I’ve been a big huge complainer, whiner, crier, bitcher, why me-er,  for 5 weeks now.  My husband deserves a medal.

Tony and I had a huge talk on the way home from the pre-op appointment yesterday.  It was THAT talk no one wants to have. I don’t want a funeral, have a party, say nice things about me,  don’t marry a dirty pirate hooker, give my daughter a good mom, don’t love your next wife more than me. I cried the whole time, but if my dad’s cancer taught me one thing was be prepared.  It all gives me a stomach ache though.

Now when I start feeling that anxiety and fear creep up on me I take a deep breath and think of my dad.  He did this.  He faced 2 major brain surgeries with his head held up like a man.  If he can do it, I can too.

Another “First” Overwith….

Facebook post Sunday August 18th,

I usually don’t post my religious views on Facebook as I respect everyone’s beliefs even if they differ from mine, but today I am very thankful for my belief in eternal families. 46 years ago today my parents were married in the Manti LDS temple. I believe families can be together forever. What a great example my parents are to me. Knowing I will be with my dad again and my whole family is comforting.

IMG_0010-3

IMG_0011-5

One of those few “good” things about knowing my dad’s time was short is that we threw my parents a surprise 45th wedding anniversary party last year.  I posted about it here.  I am so glad we did it.  What a great memory for all of us.

IMG_6109

IMG_6187

After A While

I have mentioned once before on this blog that when I was 17 I placed a baby for adoption.  It was a terribly hard experience and comes into almost a tie with my dad’s death as far as grief goes.  I am glad I did it.  It was the right choice.  I wouldn’t change it.  It has taken a long time to get over it though.  This is the first year I haven’t felt really sad on her birthday.  That could be because it was 9 days after dad died and 2 days after his funeral.  Or maybe it just takes 25 years to get over something that difficult.

The reason I even bring it up (because that is not what THIS blog is about)  is because my grandmother (my dad’s mom) sent me this poem in the days after I had the baby.  It has been a favorite of mine over the years, and has taken on different meanings in different situations.  Today as I was making dinner part of the poem popped into my mind and it was comforting to me.  I knew I wanted to post it here on this blog.

After A While

After a while you learn
the subtle difference between
holding a hand and chaining a soul
and you learn
that love doesn’t mean leaning
and company doesn’t always mean security.
And you begin to learn
that kisses aren’t contracts
and presents aren’t promises
and you begin to accept your defeats
with your head up and your eyes ahead
with the grace of woman, not the grief of a child
and you learn
to build all your roads on today
because tomorrow’s ground is
too uncertain for plans
and futures have a way of falling down
in mid-flight.
After a while you learn
that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone
to bring you flowers.
And you learn that you really can endure
you really are strong
you really do have worth
and you learn
and you learn
with every goodbye, you learn…

Veronica A. Shoffstall

A Picture Can Say A Thousand Words…….

I wanted to share an experience I had  by posting an email I sent my mom today.

Today I was looking through all the pictures Steve (my brother) scanned for your anniversary slide show for Aimee and Kimberlee (my cousins).  They mentioned that they didn’t have many pictures of them when they were younger and I said I would look through them and see what we had.  So I went through each picture one by one.  At first it made me really sad to see all the pictures of dad younger and growing up.  Then all of our family pictures of us growing up.  I stopped on this one.  Then I realized wow, we have had such a good life.  We have done so much. Gone so many places.  Done so much together.  It made me sad, but gave me peace.  Dad is amazing.  He has had such a great life.  He has been the best father anyone could ever have.  We are lucky.  He may not have another 5 years but we have had 40+ with him.  We are blessed.  Thank you for my life.  Thank you for the unconditional love.  Thank you for all you have done and still do for us.  I couldn’t imagine a better life.

grand canyon

Peace.  What a wonderful feeling after so much anger.  Don’t get me wrong.  I am still mad.  But have peace that my dad has had an amazing life and in turn has given me one.  I am grateful.

(Yes, we have matching shirts.  I think my mom had one on too.  How awesome is that??)

What A Difference Morning Can Make

The previous post was pretty dark and depressing.  Sorry.  That is just where my mind had been for the past few weeks.

I talked to my dad this morning and he sounded good and we actually had a conversation.  So I guess there is something to the idea he does better in the morning.  He knew it was me and we talked about them spending Christmas with us.  He was still a little slow, but it was night and day difference than when I talked to him the day I started writing the previous post.  (That took about 4 days to write.)

He says he feels great.  No pain.  Hates dragging the oxygen around.  He gets his staples out on Monday.

They always say the first few days after the surgery are the worst.  I think that goes for family members too.

I haven’t cried today.  That is a good start.

36 Week Update

I have been angry today. This is the day I have been dreading. The day my dad didn’t know who I was. Granted we were on the phone so I wasn’t right in front of him.  But even after my mom told him it was me he forgot within a minute.  He was polite and tried to hold up his end of the conversation. But he stumbled over his words and thoughts. I told him I was glad my sister was there to be with him and he asked me “who”. Your other daughter dad. Oh wow.

Lets back up a few days.

Last Thursday I get a call from my mom saying that they may not be able to do surgery due to some of the results they got from my dad’s pre- op EKG.  They were on their way to see a cardiologist.  It turns out my dad has a right bundle branch blockage in his heart. It is an electrical issue that affects the beat of the heart. Since it wasn’t an actual blockage in his main arteries in his heart they felt it was ok to proceed with the surgery.  We drove the 2 hours to my parents and spent a nice evening. He was tired and I could see some of the same confusion as I did before his diagnosis, but not that extreme. He was anxious to get the surgery over with and move on with the next phase of all of this.

Surgery was Friday. The tumor was just to the right of his original tumor so they were able to go in at the same place as before. So less trauma to his brain.  The surgery only took about 2 hours. Last time it was more like 4. The doctor came and talked to us afterwards.

The tumor was about 3 inches long. Serpentine in shape. He said it reminded him of an anchovy. Huh? It was easily removed and he got as much of it out as he could. He also said that there were some main blood vessels in the area he cleaned up. I don’t really know what that means. They were able to put the chemo wafers in that will slowly release into his brain and eventually disintegrate.  He was very optimistic even going as far to say we could have another 2-5 years with him. What? Really? You are really saying that to my mother? There is no way on God’s green earth that is true. I’m not a doctor, but I am not stupid, naive, and gullible. I was mad. Fuming mad he would even give my mom that kind of news. I later talked to a few of the ICU nurses that commented on how they couldn’t believe how fast this tumor grew after comparing his MRI’s.  Then they too couldn’t believe that the doctor gave my mom that prognosis.

My dad went from recovery to the Nuro-ICU within an hour. Later that day when I walked into his room he reached his hand out to me and said “There’s my girl, how are you doing?” He is laying in the ICU with staples in his head after having brain surgery and is asking ME how I’m doing.

That is how amazingly awesome my dad is.  That is why it is so hard to watch him go through this.  I am glad that at least he doesn’t understand most of what is going on and isn’t aware that he has changed and is declining.

The rest of that day he was pretty alert and aware of what was going on. He got up and sat in a chair for while. Saturday he got up and walked and started eating food. But his awareness was declining. When I left to go home he wasn’t able to pay attention long enough to say goodbye.  I attributed it to being more active and the fact that his swelling around his face and head was affecting him.

Late Saturday afternoon they moved him out of the ICU and up to the recovery floor.  My sister said he was doing well and getting up and walking “laps” around the floor.  Same for Sunday and they even talked about letting him go home Monday morning.  I called and talked to him Sunday night and he couldn’t even finish a sentence.  Again he stumbled over his works and stuttered a lot.  My mom said it was because he was tired.  She is still in rainbow and pony land.  In denial.  But hey, if that is what gets her through fine. But I felt that it was something more and just hoped that the doctors would figure it out before they sent him home.

4:40 AM Monday morning my phone rings. Nothing good come from phone calls that early in the morning. In the minute it took to wake up enough to answer the phone I mentally prepared myself for the worst.

It was my sister. Around midnight the nurses noticed he was having problems keeping his oxygen levels up and was very confused. They did an emergency CT scan and found that he had multiple blood clots on his legs and lungs. They called the emergency cardio team and they inserted a blood clot filter in his heart to break up the clots before they got to his heart. It was a relatively easy process. They went in through the vein in his neck.

Monday they wanted him to walk as much as possible. They did another CT scan to see if there were any new clots. It ended up he had a rather large clot on the back of one of his legs.  They put him on a low low dose of blood thinner. They don’t want to give him too much so if won’t cause any brain bleeding.

The doctors felt good enough with his progress to send him home on Tuesday. They sent him home with oxygen.  He forgets why he is wearing it.  He will ask my mom and she will tell him and then 10 minutes later he will ask again.  He tries to take it off and my mom has to explain AGAIN why he has it on.  He is extremely tired and taking even a shower wipes him out.

Both my mom and sister say he does better in the morning and of course I call him at night because I am at work during the day. I don’t spend all day with him so he very well could be doing better.  But having your dad not know who you are is heartbreaking.

Their next appointments aren’t until next week.  I think they need to go in now and see if he needs more steroids.  Maybe that will help with the confusion.  But my mom is content to wait.  I have to respect what she wants to do. I would be going batshit crazy right now scrambling if it were my husband.  But she and I are 2 totally different people.

I have been feeling guilty lately for how angry I have been and how negative this all makes me. I try to stay positive but honestly there is absolutely nothing positive about this damn disease.  My father hasn’t been himself since the beginning of March 2012.  I try and try to remember the last time he and I had a normal conversation void of this underlying beast and when he was in his complete mind frame.  I can’t.  It makes me sad.  Then it makes me mad.

Yes, I know I should cherish the time we have together.  But really, this isn’t my dad.  At least not the father I remember having for 42 years.  I hate how all consuming this is. Honestly I want it all to be over with.  I have been grieving from the day he was diagnosed. Almost 9 months. I love my father.  But I am ready to move on to the next step of grieving.

So now you can tell me how insensitive this is and how horrible a daughter I am for feeling this way.  I can imagine how all this looks from an outsiders point of view.  But if you have/are going through this I am sure you understand and feel the same way, at least to some degree.  I am just stupid enough to vent it all on my blog.

Recurrence

I have been procrastinating writing an update.  I am still having a hard time dealing with the news we received.  I have spent the past 3 days crying and popping Xanax, and yelling at people.  I haven’t been a very good mother, employee or wife.  My boss knows I like chocolate and brought me a big box of chocolate cupcakes yesterday afternoon (after I had yelled at 2 people on the phone.  One being one of my best friends I work with.)  I told him he must have thought I was REALLY grouchy to bring me so many cupcakes.

My dad’s MRI shows a new tumor growing adjacent to the original one.  It is about 3-4 centimeters. ( The original tumor was about 7 centimeters.)  His satellite tumor that is farther back in his brain has grown also.  My husband and I went down to the appointments with them.  First we sat and waited while he had a spectroscopy.  This type of MRI actually looks at the metabolic changes in the brain.  It took almost 2 hours.  After that appointment we went over and met with the oncologist.  He said that yes there was a new tumor, but that he thought it might be operable considering the location. I asked a lot of questions.  Got answers, but not any that I was hoping for.  If my dad ends up not being a candidate for surgery then he may be a candidate for Gamma Knife surgery/radiation.  If he is not a candidate for the Gamma Knife then he will just be given Avastin and see if that works.  I have read a lot about the Avastin.  I don’t like what I have read, but the oncologist says that he has seen in help many patients with minimal side effects.

My dad is on steroids right now.  A very low dose.  They are helping immensely.  They came and visited last Sunday for my daughter’s birthday and my dad slept the whole time they were here on the couch.  When he was awake he was very confused.  When we saw him Wednesday (3 days later) the difference was night and day.  He was alert and back to himself again.  I know the steroids are not a cure.  I know the longer he is on them and the higher the dose gets that it is very bad for him.  But I am happy that he is doing so well right now.

My parents have an appointment with the neurosurgeon on Tuesday.  I have a feeling that since they did not get him in immediately that the chances of surgery are pretty slim.  We are hoping and praying for the best.  I am looking forward to spending Thanksgiving with my family and eating lots of food and making great memories.