2 years later

As the day comes to a close I have resigned myself to the sense that this day means nothing to most people.  As I was going about my day I remember thinking to myself that today was a monumental day for me and no one around me knew it.  It’s funny how good we are at keeping in the grief so that others don’t see that it is two years later and we are still grieving… it is two years later and I am still grieving.

I started feeling a little off right around April and it just continued to worsen with each day that May drew closer.  I found myself holding back tears in the shower, struggling to drive without crying, trying to mention my Mom without crying and really trying not to lose myself in the memories of those 2 years and especially those last 24 hours.  The thought often crossed my mind that I needed to suck it up because no one wants to see me crying.  Get it together right?  So April and most of May I held off the tears and I turned off my feelings the best that I could and then I went on vacation for a week and a half.  And I was happy… and relieved. Relieved because I got to go on vacation during the month that brought back so much pain for me.  I use vacation as a crutch you see.  I went on vacation last May as well and I had the same experience.  Underneath the joy of experiencing new places I also was experiencing a nice and steady flow of sadness.  A sadness that you only know when you have lost someone near and dear to you.  A sadness that if you stop and focus on it it creates a hole that goes from your throat to the pit of your stomach like a tunnel that is going to suck you down and never let you go.  And finally I had to give into this sadness and so two years after I spent a night of restlessness listening to my mom struggling to breathe and knowing that whatever was happening was not good I broke down.  I wrote everything that I was feeling in my journal and I cried harder than I have cried this whole past year.  That night must be my trigger because it is harder for me to get through that night than it is the anniversary day of my Mother’s death. After I was done crying I felt a calmness come over me.  I just needed to process all of the grief that I had been bottling up inside of me.

The insomnia is also back.  I had trouble sleeping for months after my Mom passed away and so far the insomnia comes back each year around this time.  I wonder if it will go away.  Do I want it to go away?  I do my best thinking and processing of feelings and writing when I stay up late.  Who knows.  For now I’ll keep making my annual blog post and give an update I suppose.

So to recap the past year let’s see…

Somehow I deleted the voicemail that I had saved from when my Mom was sick.  It was a funny voicemail because Mom was laughing about something that she had to tell me but yet it was sad because it showed how much her memory and brain were affected from the cancer and treatments.  I cried when I realized that I had lost that voicemail.

My dad is dating again and in the process has put a great distance between himself and my sister and I.  It’s unfortunate but it is not an unforeseen event.  I am dealing with it the best that I can… and I talk about it in therapy ALOT.

Gavin continues to be the apple of everyone’s eye.  He still does some gestures that remind us of Mom and I am no longer focusing on how much it hurts that Mom isn’t here to see and know him.  Beth and I often talk about how much Mom would have loved to see Gavin do each milestone and how she would have babysat him and doted on him.

We still have not gone through any of Mom’s things.  I know- it’s not helping with the grieving process.  I’m not pushing to go through her things because I honestly can’t bear to do it.  I know it’s going to hurt and I am okay with avoiding that right now but I know the time is coming when we will need to do this.

Dad did put a chair back at the table where we had the space for Mom’s wheelchair. The first time I noticed that I just stopped and stared because the chair looked so out of place.  It made me very sad and I cried in the car when I went home that day.

One of my best friends from high school lost her mother to ovarian cancer this past year.  It happened very quickly and boy did it bring up a lot of old feelings for me.  I try to offer advice and insight since I went through this first but damned if I know what to say.

The parent’s of my other best friend from high school both have/had colon cancer which was diagnosed when my Mom was still alive.  I used both have/had because her Dad doesn’t need any more treatments but her Mom continues to have treatments.  Either way I don’t feel that I do enough for them.  I need to do better there.

For awhile I was pretty focused on how the devil it was possible that all three of us had to experience cancer affecting our families.  How is that even fair right?  I harped on the not so fairness of life for awhile but then I recognized that this was a harmful thought process and so I try not to focus on that anymore.  I should also mention that my friend had cancer herself prior to my Mom being diagnosed and then her parent’s being diagnosed. She is in remission and kicking ass at life.  Seriously she is the strongest person I know.  I just wanted to give her a shoutout here because she definitely deserves it.

I have also read quite a few books written by people who have lost loved ones.  I find that I relate to things here and there in each of the books but there is always at least one thing that turns me off throughout the book.  I continue to read these books because something in me is craving to understand how others have dealt and are still dealing with their grief.

I end this post with not as quite an optimistic point of view as I did in my post from last year but I will say this, when life serves you lemons you make lemonade.

June 2, 2015 – A Year Has Passed

Today marks the one year anniversary of my Mom’s passing.  Today marks the end of the first year of living without my Mom.  Today was a tough day… but it wasn’t as tough as I thought it would be.

Leading up to this day I struggled with figuring out what, if anything, I should do.   Should I go home to PA and visit my Mom’s grave?  Should I take the day off and do something that my Mom would have liked?  Should I sit on my couch and look at old pictures and re-read my blog posts?  Should I work from home, go to a client site or go into the office?  In the end I chose to go into the office and then go to therapy in the afternoon.  I decided that I could be sad at therapy but until then I had to try to keep it together.  For the most part I was successful at keeping the sadness just out of reach and I was able to focus at work but once it was time to go to therapy the sadness settled over me.  I didn’t realize just how much today was affecting me until I was getting ready to leave work and I couldn’t avoid my thoughts and feelings anymore.  It’s funny how that works… you don’t realize how much something is affecting you until you take the time to feel it. I know this and yet it still happened to me today.  I thought I was handling things well until I pulled up my blog to print the post that I did two days after my Mom had passed away.   As soon as I saw my Mom’s face staring back at me I just started crying.  What I wouldn’t give to see that face in person again

Today is coming to a close and I made it through the day without any mishaps.  As today comes to an end I feel like I did it… I made it through the first year without my Mom.  I made it through all the year of “firsts” without my Mom and it has been the toughest year of my life.  But I did it and that’s what counts.  Tomorrow starts the beginning of the second year without my Mom.  Will it be easier than this past year?  I hope so but I know that I will still have tough days ahead and holidays will still be hard as my family continues to adjust to a life without my Mom.   However I am confident that everything I have learned in this past year has given me tools to get through the inevitable hard days that will arise.

And so I end this post with a new found feeling of strength as I start to look forward to the future again.  If you have recently lost a loved one trust that life does go on and you will learn to look at the past and be grateful for the time that you had with your loved one rather than being bitter for all that you have lost.  It takes time and it takes work but eventually you will get there.

Almost a year…

Today is April 9, 2015.  Today was a good day… my best friend from college came to visit me.  I should be happy but it is 11:30 p.m. and I am sad.  Sad that my friend lives on the west coast and I don’t get to see her very often.  Sad really that my Mom is dead… sad you see because it is just past the 10 month mark that my Mom has passed away.  I have been sad since 4/1 to be exact.  Why?  I am not sure… I am assuming it is because this 10 month mark is so close to a holiday.  Maybe I am sad because the one year anniversary is quickly approaching or maybe I am just sad because I miss my Mom.  10 months feels like a long time when you miss someone that’s for sure.  In one sense it feels like forever… but on the other hand it feels so short really.  I still miss my Mom every single day.  Seriously… there is not one day that goes by that I do not think about her.  I wonder if she would be proud of me for the decisions I have made and what advice she would give me if she was still here.  I think she would be proud of me based on what my family and friends have had to say but there is no way of knowing for sure.  I try to think that the decisions I have made of late have been the last “gift” that my Mom gave to me because she gave me the strength and courage to make the decisions that needed to be made.  But then I wonder did I make these decisions in exchange for my Mom’s life?  Really?  If so, that’s pretty f’d up. There was no other ending to my story based on the facts that I now know.  I guess I am just trying to find a reason behind the thing that is “CNS Lymphoma” because without a reason then why does anyone suffer from cancer?  But that’s a much more in depth question than my brain can handle at 11:30 at night.

Anyways, I recently had an exchange with my ex husband in which he stated that clearly I was unhappy with my life and I wanted to scream “F you – who would be happy when your mother is dead you f’n dbag?!?!”.  But seriously though I bring this up not because I am unhappy but because this just shows how much people and society in general today do not understand grief.  Do you really think that someone can truly be happy when their mother has passed away less than a year ago?  I certainly can’t imagine that being the case.  How is that even possible?  I don’t know.  I seriously don’t know.  I am learning to be happy again… I am learning to be happy while having a huge “pit’ of sadness inside of me.  It’s something that is hard to explain… it’s like learning to be happy and sad at the same time, to laugh and cry simultaneously, to love life and be bitter at the unfairness of it all at the same time.  To learn to be happy is hard… it’s very hard but it’s doable.  It just takes time.  It takes more time that people realize.  It takes more time that even I have realized.  For example, last month I thought I was ready to be done with therapy.  I thought I was “good to go”… and then I took in my photo album of my Mom that showed her progression through her illness and I lost my shit.  I mean I was babbling like a baby. I have no idea what I was saying to my therapist but I was explaining the last 48 hours of my Mom’s life and I have no idea what I was saying.  I just let down the walls that I had built around those last few days and I left it all out there and when I was done I felt horrible.  I seriously had the migraine from hell BUT when I woke up the next day I felt the best that I had felt in a long time.  It was like I had released a huge weight that I had carried that I didn’t even realize I was carrying.  And that was 10 months after the death of my mother which others would think was a long time while to me it felt like just yesterday.

The point of this post isn’t to be a negative nelly but simply to show others that it’s okay to still be sad months after the death of a loved one.  Bad days still come and go and anniversaries and holidays may affect you more that you might realize.  Recognize the bad days and own them because without them the good days wouldn’t be quite as good in comparison.


CNS Lymphoma – you will not break me

I can’t believe it is December and that it has been a little over six months since my Mom passed away.  So many things have changed since my Mother’s death on 6/2/14 and yet so many things are still the same.

One of the biggest changes is that my nephew made his debut in September.  Baby Gavin has brought a lot of joy to my family but I must say he has also brought some sadness for me in particular.  What you say?  How can a new baby make you sad?  Well here’s the thing… I cannot stop thinking how much my Mom would have enjoyed doing x, y and z with Gavin and it makes me so sad to think that way.  Beth and I have talked about this and how we believe Mom is watching him from heaven.  Beth thinks that Grammy Snyder is talking to Gavin when he is smiling in his sleep.  There is probably some truth to that.  I bet she comes to see him as much as she can because I know she would be seeing him as much as possible if she was still here today.  I was also very sad when I had to make the drive to the hospital when Beth went into labor.  You see Baby Gavin was born in the same hospital that my Mom was in when her splenic artery ruptured so I had to do the same drive at about the same time (around 3 am) as I did back when my Mom was being life flighted there and it brought back so many memories.  And oh how I wished my Mom was on her way to the hospital to be there for Baby Gavin’s birth.

Another big change is that my divorce has now been finalized.  I really don’t advise losing your mom and going through a divorce at the same time.  It’s quite difficult.  If you do go down this path, get a therapist early on.  I didn’t do that and I should have.

We also got through Mom’s birthday and our first holiday without her.  I couldn’t bear going into work on Mom’s birthday and seeing people in general so I stayed at home that day.  I wasn’t quite as sad as I thought I would be but that was because I had a special experience earlier in the week which I will go into more detail shortly.  I have to say that there are certain days when things happen, when something reminds me of my mom or of the pain that was the two years of treatments and doctor visits etc. and I just break down and cry.  I still have days when I spend hours crying at my desk and in those hours I search the web for other people’s cancer stories or research brain cancer non-profits.  These types of meltdowns are okay and expected and normal.  NORMAL… so don’t let anyone tell you any differently.

Now back to my experience that I had previously mentioned – there was one week in particular when I was feeling so depressed and sad.  I just kept thinking to myself how much my life had changed and it wasn’t at all how I had planned for it to be and blah blah woes me right.  So I’m feeling pretty low and down on myself and I had a session with my therapist who mentioned that it’s okay to ask to talk to my Mom.  Don’t get me wrong, I had asked to talk to my Mom shortly after she had passed.  In fact I had it in my head the whole time that when my Mom died that it would be at night and she would come to me in my dreams and we would have that last final conversation that I yearned for.  I mean I would give anything to have one final conversation with my Mom prior to her becoming sick – if you remember the cancer took much of my Mom’s memories and mind within days of being diagnosed.  Anyways, I went to bed that night really thinking about how I felt and how I would like to talk to my Mom again.  I woke up around 5 am for some unknown reason and before I fell back asleep I asked Mom to come and talk to me.  A little while later I was awakened by someone calling my name over and over and then I felt someone squeeze my hand twice.   It was my Mom.  I said “Mom is that you?  I can’t see you.”  And just like that an image of my Mom before she was sick came into my mind.  We talked and I don’t remember what we talked about but the overall feeling of that conversation was that she wanted me to “be happy”.  I think she even said “be happy” but the more I think about it the more I’m not entirely sure that she said those exact words.   And then I woke up for real and it was like de ja vu.  Everything was exactly the same as when I had woken up in my “dream”.   I went about my morning in a sort of daze.  I couldn’t believe what had happened.  I noticed that as the day went by that I was beginning to feel differently.  The terrible sadness that had hung over me since my Mother’s death was lifting.  Mom knew I needed help… I just had to ask for it.  Lesson learned.

With Christmas just around the corner I know that the sadness is not over yet.  My therapist has already told me that while I “feel better” now that I will experience lows again although they shouldn’t be as long as this last low was.  I still have a difficulty with daily activities and it’s tough to make plans and stick to them.   I set reminders in outlook and make to do lists nonstop to help me remember things that I would otherwise forget.  Slowly but surely I am returning more to my old self…. my old but yet new self, really, because I will never again know the carefree days that were my life before cancer came and changed everything.

As for things that have stayed the same, well, my Dad has yet to change most of my Mom’s things in their house.  Her deodorant and face lotion etc. are still in the bathroom and probably haven’t been used by her since before she was diagnosed.  Her wheelchair still sits in their bedroom along with all of the daily medical supplies that we used for her port etc.   Actually everything in my parent’s bedroom looks like it is just waiting for Mom to come home to.  Dad didn’t even want to move back into his old bedroom.  He prefers the room that we turned into a bedroom when Mom got sick and wasn’t able to go up and down stairs.  We still leave the space open at the table for Mom and her wheelchair.  No one has even tried to put a chair back in that spot and I don’t think any of us want to either.  Dad mentioned that he just can’t bear to change things yet and I’m okay with that.  The one thing that I did do was I did go through and try to clean up things in the kitchen that reminded me of Mom’s sickness.  For example, I put away the pill crusher.   I just couldn’t bear to look at these things every time I was there because we used them so much throughout the 2 years that they were just too painful to look at.

And so we continue on through the grief process.  It’s tough and it’s painful but what really can you do?  Just keep going…

Doing My Best to Get By

It has been 2 1/2 months since my Mom passed away and I miss her more and more each day. I am told that things will get easier. I actually am a little tired of hearing that. I’m tired of hearing how my Mom is no longer in pain and in a better place. I’m tired of people expecting me to go back to “normal” because I had time to prepare and we all knew this was coming. Yes I know my Mom is no longer in pain. Yes we knew for 6 months that my mother was dying and you know what? That doesn’t make it any easier. You cannot really prepare to never see your loved one again. She may not have been herself for the past 2 years, especially those months leading up to her death, but I was still able to hug her and talk to her and hold her hand and now I can’t do that. It’s so final… and so unfair.

I have been getting through these past 2 1/2 months by staying busy and not letting myself think too much. I don’t even keep up with emails to my personal account right now… it takes too much energy and time to do that. Staying busy doesn’t always work… the sadness sneaks up on you in strange moments. I can be walking through the grocery store and something reminds me of my Mom and I have to blink back the tears. In fact the first weekend that I went home after Mom’s death I couldn’t even go into the local grocery store even though my Dad asked me to pick something up. You see that was my routine every weekend – run to the grocery store and pick up whatever my parents needed around the house. I could not bring myself to go in. It’s hard to go on with your life when the routine that you knew for the past 2 years is now over. You can’t go back to your old routine even if you can even remember what life was like beforehand. It’s hard to understand how people can still go on with their lives when your life has been upturned and your mom is no longer here. I have heard this from a few people and I agree with it – I wish time would just stop for awhile so I could just have some time to grieve and regroup.  The first few weekends after my Mom’s passing I thought it was best for me to stay in the DC area and get caught up on everything that I had put off for 2 years but after a month or so I realized that that wasn’t best for me.  I need to go to PA and be close to my family and the places where I feel my Mom the most. Some people say that they start talking to their loved one right away.  I am not one of those people.  I can only talk to my Mom when I am in PA or when I am writing in my journal (yep- I write in a journal to talk to Mom when I’m in DC).  I am hopeful that eventually I will be able to talk to Mom any time but for now I can’t.

My sister’s baby shower was last weekend and it was a wonderful time. However, planning for the baby shower was tough. It was so hard to stay happy because it continually reminded me of how much my Mom would have loved planning for the shower and buying her future grandson gifts. Beth and I added a red rose to each of the flower arrangements in honor of Mom. Beth also brought a picture of Mom and Dad and set it up on a table along with an arrangement of flowers which we later took to Mom’s grave. Just a few touches to included Mom in the shower. I suspect that I will be adding red roses to quite a few things for the rest of my life.

I started writing a blog post the day after my Mom’s funeral and I never went back to finish it or post it. The only explanation for this is that I just couldn’t bring myself to finish it… or blog in general. But I want to add some of that draft now so that I don’t forget that week.  So I end my blog with a recap of the week following my Mom’s death.

We made it through the week. I do not know how we did it. I must thank everyone who sent food and cards and flowers, who called and stopped by the house. The texts, emails and facebook messages were also much appreciated. Each and every act of kindness has helped my entire family to get through each day. We will never forget those who helped us so much throughout the past two years. I can say that I would not have made it through the past two years, but especially the past six months, without my support system – my family and my friends. I have heard repeatedly this week how strong we were for Mom and how we took good care of her but in all honesty it wouldn’t have been possible without our friends and family who supported us.

To recap the start of the week – Monday was a blur. Shortly after I had made phone calls to family and close friends, people started arriving at the house. The nurse arrived and did her thing and then it was a matter of gathering all of Mom’s medicine and emptying them into solo cups. I personally cut open a box and a half of powdered potassium packets and dumped them into a solo cup just to help out. The medicine was then flushed down the toilet and Beth had to sign as the witness for that. We even had to take some of the medicine out in the driveway and light it on fire. I seriously had no idea that this was something that happened when someone passes away. Anyways the funeral director sat with us and went over the obituary information. My aunt and gram went to the store to buy things to make sandwiches for lunch. I will say I ate a sandwich and it tasted like dirt. I thought I was going to choke on the bun but I ate it because I knew I needed to eat something. The rest of the day was just sitting around and talking to family and friends.

The following two days for me was just making it to point A and point B and doing what needed to be done. Tuesday was centered on meeting with the funeral director to finalize the services. It was easy to pick out the details, in fact it took longer for the funeral director to show us all of the options than for us to pick what we wanted. Roses and oak – those were my Mom’s favorite flowers and wood and that were what we picked. We ordered a huge spray of 100 red roses for the casket and they were beautiful. My Mom would have loved them. Wednesday we met with the preacher and finalized that part of the service. This was the hardest meeting of the week – we told stories of Mom and while it felt good to remember her before the cancer it was a tear jerker. Afterwards Michelle, Beth and I worked on putting together a memory board for the services. Going through pictures of Mom was tough. Often over the course of these two days Beth and I talked about how it felt like Mom was just at the hospital getting chemo and we were going to go pick her up at the end of the week. It just didn’t feel real.

And then it was Thursday… I did not want Thursday to come. I knew Thursday was the day when things started to become real. We went to the family viewing in the morning and then Beth, Dad and I took the long way home to see the countryside. We stopped and picked up the dogs and then we went for a ride up to my parent’s camper on the Farm. My Mom loved going up to the camper and taking walks through the woods. For the first year or so of Mom’s sickness, Dad would put her in the car and take her for rides up to the camper but then it became too much for her. I asked Dad a lot of questions during the ride to distract myself but eventually I just leaned out the window and cried. We got back to the house and it was almost time to get ready for the viewing. My family had decided to wear some form of red. It was fitting – it was my Mom’s favorite color. The viewing wasn’t nearly as bad as I thought it would be. I almost lost it when I had to walk into the funeral home. Boy that was a tough moment but I sucked it up and just held my head up and put one foot in front of the other. It was good to see so how many people came out to pay their respects to Mom.

The next day was the funeral and it was tough. It was just as awful as I thought it would be. We said our final goodbyes and that was that. Back to the house we went. We sat outside with friends and family and talked. After everyone left we did something that we had been planning on doing since the night before. You see Michelle had grabbed the rose from Hospice from the funeral home on the way out the door earlier that day so we lit that baby up with gasoline right there in the driveway. Was that a tad immature? Maybe but boy did it feel good. One last private FU to Hospice.



Two years and one day…

On Monday, June 2, 2014 Brenda Eileen Snyder lost her fight against CNS Lymphoma.  Brenda passed away at home in the arms of her loving husband, Dave.  Brenda will be greatly missed by her friends and family but she will not be forgotten.  Her story lives on in our hearts.  She will forever be remembered in each red rose that blooms, with each hummingbird that comes to our feeder, in each cup of red rose tea that we drink, in the scent of the perfume she wore… the list goes on and on. 

A lot has happened since my last blog post.  I write this post in a state of numbness and sadness.  My Mom passed away exactly two years and one day from the date that she was first diagnosed with brain cancer.  We knew the time was near but it was still a shock.  You can never fully prepare yourself for death.  To fully tell the last of my Mom’s story I must start from where my previous post left off so let me go back a few days and start from Saturday.

Saturday started like any normal day.  I had stayed at Beth’s house the night before so I got up and headed to my parent’s house around 8 or so.  When I arrived Dad was sitting beside Mom on the couch.  I asked how Mom did last night and he said she didn’t sleep.  Mom turned her head towards me and my heart about leaped out of chest.  She just looked so pale and sick.  Dad and I traded places so I could sit and hold Mom for a bit.  Dad went outside and I decided now was the time for “the talk”.  You see – I was afraid to cry in front of my Mom and tell her goodbye.  I had been avoiding this conversation for a while now.   Before I had left Beth’s house I read a message from a girl that my sister and I knew from high school who had also lost her Mother to cancer a few years ago.  Her message prompted me to talk to my Mom because I knew if I didn’t do it that I would regret it for the rest of my life.  So I hugged my Mom and I kissed her on her forehead and I  told her how much I loved her, how much I would miss her, how sorry I was for not being there more prior to her illness and how she was my best friend but that I would be okay.  I told her that I would take good care of my little nephew and I would tell him all about her.  I believe that Mom understood me because when I was done she turned her head and looked me in the eyes and gave me a big blink.  Then Dad came in and we laid Mom down on the couch.  Mom laid on the couch most of the day.  We did sit her up and try to feed her but she was unable to eat or drink.  My friend Blaire had suggested trying to feed Mom watermelon so I had bought one that morning on my way to Mom and Dads.  I mushed up the watermelon into the consistency of applesauce but Mom definitely did not like that.  Mom continued to be restless.  She kept moving her left foot off the couch, then on the couch, then off the couch etc.  Michelle rubbed her legs and feet and that seemed to comfort her some but she never settled down enough to sleep.  At this point we were all thinking that the timeline was in the two week range.  Once the nurse came out on Monday and switched us to liquid meds Mom would settle down and everything would be “okay”.  

 I went back to Beth’s house Saturday night to do some work since we have no internet at my parent’s house.  Sunday morning I got up and was on my way to my parent’s house when Beth called me to say that she had just talked to Dad and he wanted us to call hospice and get a nurse out there because Mom’s breathing was becoming labored.  I panicked.  I pulled off to the side of the road in Port Royal and waited for my sister to drive by.  I called my friend Amanda and told her what was going on and she helped calm me down.  I just could not bring myself to go to my parent’s house without Beth.  I was not used to this situation because when I would get these calls in the past I would have a 3 hour drive to get home so I missed the “holy shit” window when Beth and Dad dealt with the emergency on hand.   I waited and followed Beth up the road.  When we arrived Mom was breathing much harder.  Dad said neither he nor Mom had slept (this was the third night in a row that Dad had barely slept).  Michelle arrived shortly after us and we all waited for the on call hospice nurse to arrive. 

The on call hospice nurse that came out did not know what she was walking into.  When she walked in we explained what was going on and she took Mom’s vitals.  While it was difficult to get the oxygen reading because Mom’s hands were cold, the number came up at 98%.  I thought this was a joke because I had taken her oxygen level twice the day before and it gave me a reading in the 70% and 80% range.  I couldn’t even get a reading the morning the hospice nurse came out.  But what do I know, I don’t have any medical training.  Anyways the nurse finished up the vitals and said that everything was still pretty good.  Mom had a low grade fever and her heart rate was a bit off but that was probably due to dehydration.  The nurse was going to call the hospice Dr. to get us liquid morphine and anxiety medicine if she could but because it was Sunday it wasn’t likely that we were going to get the meds that we needed.  That’s when tempers were lost and we went off about how this wouldn’t be happening on a Sunday if our nurse hadn’t blown us off on Friday.  I have never seen Beth lose her temper on any nurse or doctor.  She is always the “good cop” and I am the “bad cop” but this baby must be making her more vocal because she went off and said all the right things to the nurse and then again to the hospice coordinator when she talked to that person as well.  Our aunt, who came up as soon as she heard we were calling the nurse, got to work calling different pharmacies to help locate the medicine that we needed.  Thank goodness she did because it was very difficult to find a pharmacy that had morphine on hand was able to dispense it to us that day. 

I’d also like to point out that I specifically asked the hospice nurse what I should do.  I said I live 3 hours away and I wanted her opinion as to if I should leave Monday or if I should stay up through the week.  The nurse said that it was a very difficult question and she didn’t really have an answer but that Mom’s vitals were still good and she seemed to be doing okay so there were no signs as to how long she had left.  She said that things could go quickly or they could go slowly and there was no way to know how it was going to go.

By 1:00 Michelle and I were on our way out to Selinsgrove to pick up the meds.  Of course it wasn’t as easy as that, the hospice Dr. was sending the prescriptions to some other pharmacy so 3 hours later we had the meds and were on our way back to Mom and Dad’s.  I seriously almost lost my shit in the pharmacy.  If it wasn’t for Michelle I probably would have gone over that counter and shaken the crap out of the pharmacist and then I would have driven right on out to the hospice office and had some choice words with whoever happened to be there.  

When we got back to Mom and Dad’s, Mom was the same as when we had left although she had wet herself 3 times that afternoon which was odd because she had only being urinating twice a day for the past few weeks.   Anyways Beth administered the medicine to Mom at 5:30 and we all just waited to see if she would calm down and sleep.  By 7:20 Mom still hadn’t settled down so we gave her some more anxiety medicine.  By 9 she still wasn’t settling so we gave her a little more morphine.  Beth, Michelle and both of our aunts stayed late that night.  Everyone asked me if I would be okay to stay and I said oh yeah.  I even said it’s not like Mom is going to die tonight since the nurse was out and her vitals were fine etc.  At 11:00 Mom had an accident so Dad and I cleaned her up.  It was then that I noticed that her legs and feet were red and blotchy and it continued up the back of her legs to her butt.  I asked Dad if he had noticed that before and he said no.  I ran out and grabbed the little hospice book and showed Dad the page where it listed that as a symptom of 1-2 days to hours prior to death.  We discussed calling hospice but we decided to wait because our nurse was coming out in the morning and the nurse had just been out earlier that day. We figured Mom just need some time for the medicine to kick in. I took Mom’s temperature and her low grade fever had come down so I called Beth and updated her.  She didn’t get worked up so I figured I was just being paranoid as usual.  I texted Michelle to let her know and then I went to bed.  I fell asleep listening to my Mom’s deep breathing. 

Around 2:30 I woke up and I checked in on Mom and Dad.  Dad was sleeping and Mom was still breathing heavy but I didn’t turn on the light so I couldn’t tell if she was sleeping or not.  I went back to bed.  Dad got up at 6 and woke me up.  I administered Mom her medicine and Dad had me get a wet wash cloth and wet her lips which I did and she seemed to like.  Dad ran out to do feed/water the animals and I threw on my clothes, brushed my teeth etc. and then I was going to go lay down with Mom for a bit.  Dad came in and I was in the midst of brushing my hair and pulling it into a ponytail.  I heard Dad yell for me and I ran back to the room… Dad had set Mom up on the side of the bed and he was holding her and he said she just did a big breath and there was a release.  He called for me and by the time I got back there he had laid her down on the bed.  I held her hand and she did two small breaths and that was it.  She had passed away in my Dad’s arms.  The time was approximately 6:20 – I called Beth at 6:23.

Dad and I were in shock.  I called Beth and then I called hospice.  I identified my Mom as the patient to the lady who answered the phone and then I said “I think my Mom just died”.   My Dad laughed at me later for this because I refused to say “My Mom died”.  I continued to say “I think my Mom died” because I wasn’t about to “call it”.  I wanted someone with a medical background to confirm it before I stated it as such.  So anyways I called Michelle and the rest of our family and close friends and let everyone know.  Dad and I just sort of walked around the house and talked a little bit about how Mom was in peace now.  My sisters arrived and said goodbye to Mom and then our close family and friends came and helped us get through the day. 

The past few days have been the longest days ever.  I am not crying as much as I thought I would be but my brain just feels so tired.  I go to my room and just listen to music for an hour or so each afternoon to get a break from everything.   I think we are all getting by through distraction.  We keep saying that this feels surreal.  We knew this was coming but we had no idea it would happen so quickly.  We find ourselves looking in Mom’s room for her throughout the day. We sit outside and feel like we need to come in and check on her.  Mom’s dog, Maddie, is attached to my Dad’s leg and wants to be held constantly.   I dread going back to DC where I will have fewer distractions and more time to think about my Mom.  I am dreading the upcoming viewing and funeral.  I don’t know how I will handle it.  Only time will tell…

The service will be held on Friday, June 6 at 10:30 am.  The viewing will be Thursday night from 7-9 at Rex Funeral Home in Port Royal.  Donations may be made to the National Brain Tumor Society. 




Today we got shafted… but it was partly our fault too.  You see we were counting down the minutes for the hospice nurse to call and let us know what time she would be out.  Her call came and this is basically how it went down.  The nurse asked how things were going.  Beth said not so good.  It’s actually pretty bad.  Mom isn’t eating and we are having a tough time getting her medicine into her. The nurse goes on to say oh I see well we are really busy here today and I was hoping I could just come out on Monday.  Beth said uh well things aren’t going well. Dad asks what is going on and Beth tells him the nurse is busy and wants to come out on Monday. Dad says ok then as long as it’s the actual hospice nurse and not a fill in which Beth relays to the nurse.  The nurse neither confirms or denies that she will be the one to come out on Monday and proceeds to tell Beth that if we think we need someone to come out over the weekend that we can call and have someone come out.  That was that…  our one chance to get the nurse out there gone in the blink of an eye.  Beth hung up the phone, we all looked at each other like did that really happen and then Beth said I shouldn’t have done that.  I should have said we need you to come out now.  We all agreed but we were so flabbergasted that she would push to come out on Monday after Beth told her how bad things were that we didn’t push for the nurse to come out.  I know I myself didn’t utter one word during the whole conversation because at first i didn’t even realize it was the nurse and when I did I couldn’t believe she was asking to come out on Monday because she was too busy.  The conversation was over so quickly that we didn’t even know what had happened until after Beth hung up the phone.  Beth was going to call back and request that the nurse come out but Dad said not too. You see Mom’s color was a bit better today and she had been able to eat enough applesauce to get her anxiety medicine in the morning so Dad thought she was doing better.  He still believes this is all allergy related…

And so we  are left not knowing anything about where we stand.  We are hoping that we make it through the weekend without any emergencies.  We are in a constant state of stress because we expect the worst to happen at any moment.  We are just praying that Mom takes enough bites of applesauce to get the three main medicines down – zoloft, zanax and tylenol.  We are constantly checking Mom to make sure she is breathing and that she isn’t in pain.  Mom did leave out the weirdest yell this morning that scared the shit out of Beth and me but Dad missed hearing it because he was outside.  I think if he would have heard that he might have changed his mind and let us call hospice to come out.  We even called our aunt to see if Dad would talk to her and reconsider calling the nurse but that didn’t work either.  We are just going to have to wait and see how the weekend goes and make sure the nurse comes out on Monday.  Dad doesn’t get a choice on Monday – that nurse better be there or I will be calling them whether he likes it or not.  

Beth and I agree that through this whole ordeal we have just been shafted one time after the other.  Just completely shafted. Hershey shafted us and now hospice is shafting us. There must be something about us that screams “Please shaft us!”  Where is the hospice system that is supposed to be there and help out families who are caring for dying loved ones?  I have heard stories of wonderful hospice nurses who actually care and are kind and help make this process easier. This is so different from our nurse who can’t even call in a damn prescription, who argues with my sister over the process of requesting an antibiotic from the doctor, who just shows up for 10 minutes and says ok vitals are good see ya next time.  It’s not just my opinion that our hospice nurse stinks – our friends and family all say the same thing.  But again we are in a rock and a hard place – Dad is too afraid to change because he thinks that new hospice care would come in and say we have to change everything that he is doing and he doesn’t want that.

Helpless – that’s how I feel right now.  I walk around my parents house with a constant weight in the pit of stomach that just makes me feel like I want to vomit.  At one point I just started crying because I don’t know what is the right thing to do is anymore.  I made an excuse to run to town today just to get some time alone in my car.  Did I rush home and panic over nothing?  I don’t know.  I guess I won’t know until after the “FD’s” have happened.  I don’t expect anyone to be able to tell me the exact day that my Mom will pass away but I would like an educated estimate…. like with these symptoms you have 2-4 weeks or 1 week or some general guideline.  It’s all just so frustrating… 

Dreadful Day

Today has been the day that I have been dreading… Today is the day that I got a call to come home.  I knew it was coming.  I had a feeling yesterday when I talked to Dad and he said that Mom was doing “bad” that I would be getting this call.  Dad even said that she was the worst she has ever been.  My Dad would never say those things if he wasn’t really worried because he has always tried to downplay declines in Mom’s health.  Even last weekend when we noticed some slight changes, Dad said it was just Mom’s allergies.  

So what are the changes that caused my sister to call me?  Well, Mom is refusing to eat and drink so she is not getting her medicine.   Mom will allow you to pour water into her mouth and then she holds it in there for a bit before she opens and lets it all run out. With the applesauce, she won’t swallow that much either.  Sometimes she will clench her teeth so you can’t even get the applesauce into her mouth.  She seems to be more restless then whether from pain or what we have no idea.  Mom has also lost a lot of weight from last weekend too.  All of these things are nothing new, it’s just that now everything is just more pronounced.  Beth also said that Mom really looks “sick” today with dark circles under her eyes and she has discharge from the left eye that has the lymphoma in it. Again nothing new, she has had days with dark circles here and there but again now it is more pronounced.  Oh and she has increased mucus in her throat/sinuses.  Dad has been putting Vick’s on her non stop to help her breathe but he says she sounds really bad now.  In fact I could hear her breathing in the background when I called Dad and he didn’t even have to put the phone near her for me to hear it.

Now to be fair the hospice nurse hasn’t been out since Tuesday and even then it was a fill in nurse as the usual nurse was off so again my family is just going by their gut feelings.  We have not had anyone say okay your 72 hour countdown begins now.  Maybe we have weeks left yet but then again maybe we don’t.  One of these days is going to be “THE DAY” and we have no way of knowing when that will be so we have to take everything seriously each and every time.  Hence why in the past I have rushed to the ER room as much as 3 times in one week.  Now it’s just rushing home when changes develop because treatment is done and this stage is about comfort and quality of life.  

What are we worried about?  Well, Dad is worried that the nurse will change the medicine and put Mom on morphine which will hasten her death.  I think I talked about this in a previous post so I won’t go into detail on this now.  We are all worried that Mom is in pain and we don’t know it.  Dad feels certain that if she was in a lot of pain he would be able to tell but I’m not 100% certain on that.  I guess we’ll just have to wait to see what happens tomorrow when the nurse comes out.

So how am I taking this?  Well I can tell you that I have been taking this pretty hard.  Last night I finally started to pack my suitcase for the final days (“FD’s”).  I have been thinking about this for awhile now and trying to prepare myself.  I have made lists and asked people what I should be sure to pack because I don’t really know what the FD’s are going to entail.  However I could not make myself actually start the process of packing that suitcase.  One time I did lay out some clothes but then I let them sit there for 2 weeks before I just put them away again.  Yeah packing that suitcase was a goddamn nightmare.  I felt like I was in a daze.  I have no idea if I packed the right stuff.  I couldn’t even find the lists I had made.  I just grabbed this and that and put it in… and I cried the whole time. Then when I was about 80% packed I stopped and decided I would finish packing when I did get “the call”.  So I decided I had better get to sleep… but I couldn’t.  I tossed and turned for about an hour, fell asleep for maybe 2 hours and was back up at 1:30 wide awake.  I gave up trying to sleep so I cleaned a bit and then watched a chick flick.  This is the worst that I have had stress affecting my sleep.  I will say that for the past few months my sleep pattern has been way off.  I will sleep little one night (about 4 1/2 hours) and then I’ll be exhausted so I’ll sleep well the next night and so on and so on in that pattern.  I even take Melatonin to help me sleep but I don’t think it’s working very well!    

This brings us to tomorrow which could go either way on the scale of shittiness but one thing I know is that it will certainly be exhausting.  I am not looking forward to the nurse’s visit and everything that it entails.  The end grows near and it scares the shit out of me.


Mom in May

Today a text came up on my phone from Beth… “Hey did you call mom and dad this AM?”. Oh shit – my heart skipped a beat.  I just knew something was up and I should have called home.  I gave Dad a call b/c Beth wasn’t texting me back fast enough (everyone should just answer my texts as soon as I send them you know).  Anyways Dad filled me in on the news.  The hospice nurse came out this week and said that Mom is getting worse and that she would be increasing her visits to twice a week in order to monitor Mom’s pain level.  When Mom is showing signs of pain the nurse will order morphine which could take a few days to order.  Hence the need to increase the visits.

My first thought was what did the nurse see that we weren’t seeing?  Not to sound crazy but my Mom has been on the same plateau since the last time I posted.  In fact she has been drinking and eating a little better than she was… not great but not choking as much as before.  I thought that Mom was holding her own.  If the nurse didn’t think 5 weeks ago that she needed to come out two times a week then why would she think she needed to do so now?  I asked Dad this question and he said that Mom’s weight loss was the reason because her vitals are all still good.  Really? I don’t get it.  Mom has slowly been losing weight the past few months as she has been eating less and less so of course she is going to look thinner now.  She is still heavy through her belly so it’s not like she’s a twig but she does look very thin through her face and shoulders.  So now I wonder if the nurse saw something that she didn’t tell Dad or is Dad just not telling me something because he doesn’t want to upset me?

I guess I don’t know how to really take this new development.  Does it mean Mom is getting worse and may need to go on morphine soon or does it mean that we have another 4-5 weeks on this plateau and the nurse finally took notice of something other than vitals?   I don’t know… I have given up trying to figure anything out.  I am just making sure everyone knows that I may have to go home at any time.  Not that this is any different than before but I will admit that I am a little scared because this nurse means business now.

So I will continue to wait and evaluate the situation each weekend.  Until then I am going to be sad and process this the best I can.  As it is I have a hard time seeing Mom in this state.  I try to stay busy and not have too much downtime with Mom b/c it’s in these moments that I am most sad.  It is really hard for me to hold it together when I have quiet moments with Mom because that’s when reality sets in and the whole f’n mess that is all of this just stares me in my face.  If I stay busy I can avoid these moments… for now. There will probably come a time when I will have to face everything I am trying my best to avoid.  I dread when that day will arrive…

I just want to say that we got through Easter and Mother’s Day.  They didn’t even feel like holidays to me.  They were just two more days in the life of CNS Lymphoma that happened to have a little better food and dessert.  They certainly weren’t happy days… how can you have a happy Mother’s day when your Mom is dying right in front of you?  Yay – can’t wait for Mother’s Day next year and every year after that when I get to be reminded that my Mom is gone.  Oh what’s that Hallmark?  How many advertisements can you show for Mother’s day cards to rub it in my face that I will never buy another Mother’s Day card for my Mom again?  Is it normal that I think this?  Does everyone who loses a parent think this way?  Maybe I would feel differently if I had children of my own?  I don’t know… I am probably just thinking this way because the pain of everything is so raw right now.  Maybe by this time next year I will feel differently.  I guess I’ll have to wait to find out.

Also the Race for Hope-DC was held on May 4, 2014 and I had a wonderful turnout for my team… 25 people!  Thanks to everyone who came out to walk with me and those of you who donated online.  The Band Together for Brenda T-shirts were a big hit!  The weather was perfect, my team was awesome and I didn’t even have time to be sad.  This day makes me feel like I am finally able to do something towards finding a cure for brain cancer.  I may be one of thousands of people walking and my $40 entry fee may be lost in the millions that were raised for this walk and I may not know what that money is specifically going towards but it made me feel like I was doing something to prevent brain cancer.

Race for Hope-DC 2014

Race for Hope-DC 2014

T for Tumor

Well… I don’t know how to write this post.  I had so many thoughts on the car ride home for this post and now that I am in front of the computer I simply cannot remember how or what I wanted to say.  I am just overwhelmed by how quickly my mom’s health has changed.  It was shocking to go home this weekend and see her.  I talked to Dad throughout the week and he said Mom wasn’t responding to him, she was sleeping a lot and she was not able to support herself at all when Dad moved her- all things that I thought she wasn’t doing the last time I saw her.  Dad mentioned that Mom had a head cold and he was giving her Mucinex D again. Then the hospice nurse came on Friday and said the vitals were all good and to just keep giving the Mucinex D. I took that to mean that Mom was the same as before except that she was sleeping a bit more and her head was congested etc..  I didn’t take the time to really listen and understand just how much her health was declining.

I went home Saturday morning and it was like walking in to find someone else in my Mom’s wheelchair.  Where did my Mom go?  Where was my mom who could still respond a bit and make eye contact and eat small amounts of food and drink water?  Who was this lady whose head was “stuck” looking to the left side with the eyes that just stared downward towards her elbow.  This lady who didn’t respond one bit when spoken too… who didn’t make eye contact not once during the day. Who was this lady who moaned for minutes after she was transferred from her chair to her bed/couch?  This lady who could barely drink or eat applesauce and yogurt, who could no longer eat solid foods, who drooled and had mucus running out of her mouth, whose whole face was swollen, whose lips were three times their normal size, this lady could not be my Mom.  I was blown away.  Now I understood why my Dad was so concerned when I spoke to him on the phone all week.  This was a whole different ball game now.

Today we called the hospice nurse to update her on Mom’s condition because we just had no idea if what was going on was “okay”.  The nurse assured us that we were doing everything we could do and that the swelling was a normal side effect of the brain tumor. Today the swelling has gone down and Mom made a little bit of eye contact and moved her head a bit so she did improve some. Overall the consensus is that these are the signs that the hospice nurse has been warning us of since day one. What a kick in the stomach.  This is what it all comes down too… this sucks.  It just sucks.  How do I help take care of my Mom when looking at her just makes me so sad? When all I do is walk around the house and do easy math in my head to prevent myself from crying? When I clean to distract myself from reality?  I mean are these even sentences that I’m typing now?  I have no idea.  I could not sleep last night- I was up tossing and turning.  I cried the whole way back to DC.   This has just been such an emotional roller coaster.  Up and down, up and down… hope and hope and hope and then hospice.  Hospice where the end is the same… where the end is just so FINAL.  And I know I’m being selfish.  I had 30 good years and that is more than some people BUT it’s not as much as other people and that is what really bites.

And now… now I pack a bag to wait for the hospice nurse to come say you have 72 hours left.  72 hours before I say goodbye forever. Why do they have to wait for the 72 hour countdown?  I don’t know- I would prefer an estimate as of today.  I would take just one damn estimate.  But apparently that is not how our hospice works… you get the 72 hour countdown.  But I have to remind myself that this is why I took a lot of time off from work in November and December and spent it with Mom and Dad.

Boy, that felt good to get all of that out.  I don’t know when I will do another post.  I may just do a few status updates on facebook.  I guess it just depends on how this all goes. Maybe we will get another month or two but it is not looking like that.  Although we have thought that before many times and we have had to eat our words each time.  But I think this time is different. I don’t know that for sure because you know… no one can tell us anything until it’s 72 hours out.  Who knows.  That has been my Mom’s story in one big nutshell… who knows. We just don’t know.

So to end this post on a positive note, the Race for Hope-DC is happening on May 4, 2014.  I am sponsoring a team again called “Band Together for Brenda”.  Please feel free to join my team and come walk with me.  If you need help signing up please contact me and I’ll get you the website or just google “Race for Hope -DC”, click on register and look up me or my team name.  If you want to give a donation you can do so as well.  Just go to the same site and click on donate and then look me up by name or by team name.  I am also planning to have t-shirts made. I will post more on facebook about the t-shirts once I have the details finalized.

Until next time…