Pessimist vs Realist

Some may call me a pessimist on certain subjects.  I prefer realist, although I do catch myself from time to time leaning to the pessimist side.  When it came to my Mom’s illness I know that I appeared to be pessimistic and morbid.  However, I didn’t have the luxury of keeping my head in the clouds.  I was being pushed along the conveyer belt of emergencies, doctors and decisions whether I wanted to or not at a pace that didn’t agree with me.  But no matter how many times I screamed for it to slow down the conveyer belt just seemed to move faster.  So many times I wished that I could just pretend that everything was fine.  Bury my head in the sand and make it all go away.  I would have loved to have had the luxury of optimism.  It was not to be.  I had to be realistic and pessimistic at times; even morbid.  During the last few months of her life morbidity and death were a “normal” part of life.  Death was an unwelcome visitor that wasn’t going away without my Mother and a piece of us that were close to her.

Now I do have to say that we, along with my Mom, firmly believed and were thankful that she knew where she was going when death did take her.  We knew she was going to be happier, and better off with God, my Dad and many other family members in heaven.  The after wasn’t the issue, it was the before and during that was a weight on my shoulders that caused me physical pain, and still does.

As I have stated in other blogs my Mom was in survival mode and couldn’t handle the full brunt of what was happening to her.  I did not and do not blame her for not wanting to know all the details of what was happening and until we have been there we cannot judge.  She entrusted the rest of her care group to understand, make decisions, meet and discuss and only tell her what she needed to know when she was ready.  This was no easy task and put a lot more pressure on us to make the right decisions.  I took her trust very seriously and wanted to be sure that whatever decisions we made were what she would do for herself.   She made the big decisions like whether or not to have surgeries, chemo, and procedures.  But it was us, her main caregivers, which dealt with day to day decisions that seemed endless.

To be able to deal with what was happening and what was going to happen I had to build a hard shell.  I had to keep my mind in check at all times.  At times I felt my mind slipping into, “Maybe, just maybe we can pull this off.”  Or, “She can’t die, that just seems too drastic; so final.”  And I would have to move myself back to the real world because there were people depending on us to make the decisions that would determine where she would live out her days in safety, how, where and when she would die.  Mom refused for months to sign or provide any information or wishes if she were to need life saving measures.  We battled, went behind her back, begged, pleaded, brought in reinforcements but she just wouldn’t sign a Do Not Resuscitate or a Health Directive.  And finally when she did she left it blank except to say that my sister and I were in charge.  As hard as I was pushing myself to reality she was pulling away from it.  In her mind, if she signed a Do Not Resuscitate or wrote down wishes it meant that she was giving up.  So we had to hope and pray that nothing drastic happened before we had those papers signed.

There were times where I felt like the grim reaper.  I made almost nightly phone calls to family members during after emergencies, surgeries, etc.  For at least the last 4 months some family and friends were nervous to see my, or my sister’s caller ID pop up on their phones, or to listen to a voice message.  I would cringe when I would call people and before saying hi I would quickly say, “No emergency”.  Just to ease every one’s minds as quickly as possible.  When people would come to her apartment, especially if they hadn’t seen her in a while I would run to meet them at the door to caution and warn them of her condition in the hall so they could prepare themselves before seeing her.  I felt like I was the constant bearer of bad news.  I felt like I was the downer when in groups of people.  I avoided people during the hard times because I didn’t feel like I had anything good to say.  This was the most negative time in my life and I had no control over the circumstances.  “Choose your attitude” takes a real beating when you are facing the suffering of your Mom day in and day out.  My rule for myself was that I saved my smile for my children and Mom.  My husband knew that sometimes I didn’t even have the energy to smile or speak.  And I know that this sounds like depression but it wasn’t.  It was overpowering, overwhelming, exhaustion of the soul, physically, mentally, emotionally and spiritually.  I had to save my energy for my Mom.  No matter what was happening outside when I went in her hospital room or her apartment I had a smile and energy.   Everyone else could wait; she couldn’t.

Finding the Beauty in the Battle

My Mom didn’t die in an accident, of a heart attack, or a stroke the day that she was diagnosed with cancer.  She wasn’t taken from us suddenly.  I realized this shortly after she was admitted to the hospital the first time.  Now this may seem pretty simple.  But it changed everything.

I knew we were all in a battle; with Mom at the centre.  Not only was she battling for her life, we were battling for her and sometimes against her.  And there were times where it would have been much easier and preferable to walk away.  Walk away and say that we weren’t that close anyway.  Why should I stick around?  Or do the bare minimum, or less.  I had to decide early on and at times it was a daily decision to stay and fight.  So many times I had to take deep breaths and talk myself into going into the hospital or to my Mom’s apartment.  I was so tired of the battle.  Some days I just wanted to retreat to my home with my husband and children and hide under the covers until it was all over.  Other days I wanted to run; get on a plane, or just keep driving on the many days and nights that I was going to or from one place or another.

But, one of the major things that kept me going was that she hadn’t died in an accident.  My Mom was still here.  I knew that she was going to die from cancer from the day she was diagnosed.  But she hadn’t yet.  She still had a chance to die with peace.  She was still able to make amends where necessary.  She and I still had a chance.  My children still had their Grandma to make memories with and to learn from.  I didn’t take this lightly.  What my Mom and the rest of the family would have given to have time with my Dad; time to say goodbye, time to share memories and make new ones for those left behind.  I also have friends who have not been so blessed.  Their mothers passed suddenly without the opportunity that I was being given.  If I were to squander or ignore this opportunity I felt that I would be disrespecting what they had gone through; to throw away something so precious that they would have been so thankful for.

So I knew that I was in the battle whether I wanted to be or not and I was going to make the best of it.  I stepped up with doctors, nurses and other professionals when needed not because I wanted to be a hero but because it just needed to be done.  My Mom didn’t fully understand what was happening to her and so didn’t always understand or want to know what the doctors were talking about.  I also knew that she had always struggled with feeling like she had the right to speak up or make a nuisance of herself.  And so I knew that if we didn’t speak for her, she most likely wouldn’t.  I wanted to be sure that she wasn’t letting too much go because she didn’t want to make a fuss.  A great example of this is in her last days one of her last words was “sorry” when we would move her and she would show pain.  She felt guilty for feeling pain.  I also wanted to be sure that the doctors knew that she had advocates on her side.  There were also times where her choosing to not understand her condition became a danger to her.  We had to keep on top of every possibility to be sure that we were ahead of as many disasters as possible.

But her illness wasn’t all battles.   That was the beautiful part and I was determined to see the beauty in the battle.  If I had run away trying to avoid the pain I would have missed out on so much more.  My children would have missed out.  My Mom would have missed out.  Instead I determined to make the most of every minute we had left.  As painful as some of the memories are now I would rather have them mixed with the good ones rather than to be left with only regrets.

Eternal Hope of a Daughter

There are a few posts that I have dreaded and the next few are among them.  I have been thinking about this for at least a month; pondering, writing and rewriting in my mind.  I have been writing about my Mom’s illness this summer and it has been good.  But I came to a sudden stop.  Because I knew that I had to write this.  The last post was supposed to be this one but I avoided it, just one more time.   This time I can’t.

The facts, dates and research are somewhat easy to write.  Even though the memories are very painful, it is much easier to write than the emotions.  I hate crying.  I hate crying in front of people even more.  And writing out the emotions of my Mom’s illness is like crying in public.  I feel so vulnerable, so exposed.  But, it needs to be done for me to move on.

When my Dad was killed just before I was born my Mom wasn’t able to breastfeed.  In the first few days it was discouraged due to hormone issues and medications that she had been given.  But even after those initial frightening, horrible days we weren’t together much.  She had a farm to help run, lawyers, trials, grieving, among a million other things that she hadn’t planned on.  I honestly don’t think she knew what to do with me.  I represented the hopes and dreams of a future that was never to come.  Her parents were there and helped take care of us.  So I bonded with my Grandma and later Auntie D more than I did with my Mom.  My Mom and I never regained that bond.  We both knew that us having very different personalities was not the only issue in our relationship.  We never actually discussed it; we didn’t seem to need to, even on her death bed.  Our lack of bonding had been a necessity of the moment.  And once I was old enough to understand what had happened around my birth I understood that she had no choice.  But her lack of choice didn’t, and doesn’t, take the hurt away.  I didn’t have a choice in any of it.  I was an innocent child who not only would never know my Dad; I would never really know my Mom.  The woman who was to be my Mother was taken from me.  She was changed in such a basic, cellular level; her hormones, brain chemicals, physical appearance and personality changed.

I was and am so thankful to have other Moms to fill in the gap.  I don’t know where I would be without them.  My Mom was sometimes threatened by these other mother figures but I think she was thankful for them as well.  But as thankful as I am to these women, I had always somehow hoped that my Mom and I would magically grow this bond and be as close as other mother/daughters.  There is the “what if”; no matter how many times I told myself how unhealthy it was.  When it comes to our parents it seems that we all become eternal optimists holding out hope.  Would my Mom and I have been close if my Dad had lived?  Or would we have still clashed and this way I got my “other” mothers?  Did I actually gain by losing?  We will never know these answers and I’m working at coming to peace with what I did and do have so I don’t have to ask “What if” as much as I used to.  When she became sick I had every emotion possible swirling around me.  As much as I had known that day was coming it is still painful to be looking at the end.  Not only of my Mom’s life but also at the end of the eternal hope for that magical bond.  Would we come together just in time?   Would we have enough time?  Could we accept each other after all these years?

I knew there was a cost to both scenarios.  If we became close while she was sick it would only be to lose her all over again.  But if I ran away instead and didn’t at least try what regrets would I have?  Could I live with myself?  Could I walk away from a relationship with my Mom even if it was fleeting?  Could I handle the pain of either choice?  Again, this was a choice that wasn’t really a choice.   I had no choice.  I couldn’t walk away.  And I have no regrets.

The 7th Floor

For the next 5 days I tried to relax; tried to enjoy my husband and kids because I had a feeling that this would be our last chance for a while.  But my mind was back in Winnipeg.  I knew that my Mom was now stable but there was a chance of another emergency at any time.  And I felt so guilty about having left when she was in such a bad state; even if there was no way for me to know what was going to happen.   After leaving Minnedosa we went to visit my Dad’s sister in Saskatchewan.  It was comforting to be with family at such a difficult time. Of course cell service was spotty at best so I was thankful for my Aunt’s land line to keep in contact with my sister.

Friday night we stayed in Brandon, 2 hours from home.  When we got up it was pouring rain and I just wanted to get home.  We had to drop our speed and actually come close to a stop on the highway a few times because I could barely see the road.  But all I cared about was getting home to see my Mom.  We drove in the driveway and it was still raining but not as hard.  Pasith took the kids in the house and helped me get the luggage in.  I threw everything in the back door into the kitchen, said bye and left.  I got to the hospital early afternoon and was in a near panic to get up to the 7th floor.  I hadn’t spoken to her yet, only my Aunt A. and my sister.  The rain had finally cleared.

There she was in her bed by the window with a beautiful view of the Red River.  She had the tube out of her nose and they were allowing her broth and light foods.  She was so excited to tell me about how much better she was and wanted to know how our vacation had been.  I told her that I didn’t want to talk about it because I felt guilty for sitting on a beach and visiting family while she had been in such a horrible situation.  She said that she had wanted us to have a good time and had hoped that we wouldn’t come home.  She wanted to know about our vacation to take her mind off what she was going through.  Mom was allowed to go for short walks and wanted to show me how well she was doing.  So we went down to the end of the hall to the visiting area over looking downtown and both rivers.  While we sat there we got caught up on most everything; except her condition.  She didn’t offer up much information on what had happened or was going to happen just what she had to and then asked if I had spoken with my sister or Auntie A.  I knew Mom well enough to leave it alone.  I helped her back to her room and said I had to go to the washroom.  I went down the hall to the nurses desk and asked how she was really doing.  Surgery was still a possibility but it depended on her condition.  They had drained off another liter of fluid from her lungs, so that was 3 ½ litres in 2 ½ months.  They were going to have to “tap” her lungs to get rid of the fluid once she was well enough.

I stayed till about 9:30 that night, went home overwhelmed but relieved to be back.

The Bottom of the Hill

As August approached along with our week of vacation I got nervous.  I was scared to go too far from home.  Mom just seemed on the edge.   But what edge we didn’t know.  Mom had a CT Scan of her abdomen at the end of July “just to be sure”.  Even though the breast tumor had been found the doctor wanted to be sure there wasn’t something else lurking to explain Mom’s quickly failing health.  Pasith and I were leaving on our trip on the Monday but the doctor requested to see Mom that day so we drove south to Steinbach before heading west.  Mom, my sister and I went in to hear what the scan results were.   I had done this enough times that I knew if it was requested that Mom bring her daughters it couldn’t be good.  There were “nodules” found in her abdomen; all over her abdomen.  Not contained in a particular organ but on the outside of them.  When asked if the nodules were cancer the doctor answered with the obligatory response of “we won’t know without a biopsy”.  Well I had my answer.  Mom took it in stride as she had everything else that summer.  It was a combination of not understanding and not wanting to ask to gain understanding.

After the appointment we took Mom back to her apartment and she just looked sick and tired.  She had a hard time walking or talking and requested to just go inside.  Auntie A helped her up the 3 steps and my sister, Pasith and I took a walk.  I was having a terrible feeling about going away but was told to go and have a good time.  Everything would be fine.  My sister and I discussed the “nodules” and what it could mean.  The analogy that came to my mind was one we had used with Pasith’s Dad during his first major emergency.  That first jolt is like you are suddenly rolling down a hill out of control.  You land at the bottom looking up into the faces of doctors and nurses who now control your life.  Your life is no longer your own.  The bottom was coming.

Pasith and I left and I was sick as we drove away not knowing if I was going to regret this decision to go on vacation at this time.  We went to Minnedosa, Manitoba to lie on the beach for a few days and the weather was perfect.  Being in a remote location our cell service was spotty, especially in the hotel.  So on Tuesday morning when I saw that there was a text from my sister saying Mom was in the ambulance on her way to St Boniface Hospital in Winnipeg it was a horrible jolt.  And the text was over an hour old.  I ran around the lobby of the hotel trying to find a signal to call her back.  Mom had gotten up in the middle of the night and started throwing up, really bad ugly stuff.  She woke up Auntie A to take her across the street to the hospital.  By the time she got there she was in very bad condition and they were discussing surgery but the surgeons in Steinbach aren’t trained for specialized intestinal surgery.  So they decided to send her to Winnipeg not knowing if she would survive the ambulance ride.  Auntie went back to my Mom’s and collected a few things and took off behind the ambulance.  My Aunt can describe this scene much better than I can since she was there but I just know that it was a grave situation.  They got Mom settled in with a tube down her nose into her stomach and tubes coming out of just about everywhere.  The doctors decided she wasn’t stable enough for surgery they would have to wait.  She wasn’t allowed any food or drink, just ice chips.  My Mom was at the bottom of the hill looking up.

The Long July

In my memory the month of July, 2009 is thin.  It feels spread out like a dream that seems to last all night.  It was very confusing just feeling like the answer is just around the corner but when you get around the corner it’s all changed on you again.  Stumbling in the dark not knowing where you’re going.  Pasith and I had just moved a few months earlier and had been excited to get started on projects and settling in.  We had to make some tough choices about what was really important to get done and what could be put off.  We had been planning a trip ending in Saskatchewan visiting my Dad’s sister and his best friend.  And we knew that had to stay in the summer agenda.

Mom was struggling and I think feeling more and more afraid.  I would ask her how she was doing and she would say “Ok.”  But I knew there was more to it.  And I finally asked her to be honest with me.  I was asking because I wanted to know and needed to know.  It took her a while to trust my Aunt, sister and I and to see that we were there to help not control her life.  I was watching for any small change that would indicate a huge change or catastrophe.  Pasith’s Dad had cancer and passed away a year before my Mom was diagnosed so Pasith and I had just been through a similar situation.  We understood what could happen with cancer and how quickly it could turn on you.

My Aunt A. came up for a visit a few weeks after the family gathering in Warroad. She was very concerned and wanted to be with Mom for some of her appointments but also just to be with her.  Auntie A is the family caregiver and I don’t know where our family would be without her.  Auntie A. was staying with her and one afternoon Mom suddenly felt strange and tried to reach a chair to sit down in the kitchen.  She missed and fainted on the floor hitting her hip and her forehead on the way down.  Auntie A. panicked, rightfully so, and called 911.  She didn’t know if Mom had a heart attack or a stroke.  Mom lived a half a block from the hospital so the ambulance was there pretty quick.  Auntie had been able to get Mom conscious and Mom crawled to the back steps of her apartment where the EMS tried to help her stand but she couldn’t.  They basically carried her outside and into the ambulance.  She was checked and released in a few hours.  There was no real explanation for her fainting except that her blood pressure and oxygen to her brain had suddenly dropped because she had tried to bend down.  We were definitely a little more concerned about leaving her alone.  Auntie A. decided to stay a few more days just to be sure.  And we insisted on moving things up for her so she didn’t have to bend down.

Mom was stubborn and a little cranky about everyone making a fuss but yet I think she knew that we all just wanted to keep her safe.  Over these weeks she was also complaining about another issue.  To put it as delicately as possible her intestines weren’t working well.  She had talked to her doctor about it but the doctor didn’t seem to be taking her very seriously.  From what happened later we know that she was suffering a lot more than she let on at that time.  So she was getting help from the ER doctor to try to find relief.

I went with her for her mammogram in the middle of July.  She stayed overnight at our house, for the last time, and we spent a large part of the day together.  At the mammogram she had the first pictures taken and was getting dressed when the technician asked her to come back in for a few more pictures.  They had spotted something under her arm.  They had her contort into a nearly impossible position trying to get a better picture.  They found a 2 centimeter tumor under her arm.  It had been too far back for it to be caught on her previous tests.  We thought we had the culprit.  But something was telling me that this wasn’t the whole story.

Never Enough – Part 2

Of course, in the case of my Dad I didn’t get the chance to ask any questions or have a conversation.  I have to say that it is probably the most painful part of not having him here.  I would give anything to ask him a question.  I’ve tried to imagine what that would be like… where would we sit; inside or outside?  Around the kitchen table, or in the living room?   Would there be coffee – did he drink coffee?  What would be my first question?  There are thousands that enter my mind.  Where would I begin?

But instead I rely on other people completely.  Every tiny bit of information that I get my hands on is gold.  I love meeting anyone that had any kind of contact with him.  I love hearing stories and even the simplest things like his favorite… anything.  It’s so exciting for me to explore tiny parts of him.  I was able to ask my Grandma Pearce questions but I was always hesitant and not wanting to hurt her – it never felt enough.  And now she is gone so that avenue has ended.  His brother is also gone so it’s getting more and more difficult to find things out as the people around me get older.  I am beginning to cling to his sisters because they are a close physical part of him.  When I’m around them I feel like my Dad is there with them in a small part.  They are becoming a very important part of my life and I cherish every moment with them that I can.

But, it isn’t only the stories that bring me closer to him, it’s just walking down the street in Moosomin; going into the stores that he would have gone into, smelling the clean air, seeing the other farmers that are about the age that he would be now.  Imagining who he would talk to and where he would go.  As the town progresses and changes it’s not quite the same but I am hanging on for dear life to what is still there.

My life lesson is to cherish every moment, ask questions and tell people how you feel when they are still here but be assured that no matter how much you think you have connected with someone – it is never enough.

If you haven’t connected with a person in a long time, or ever, the longing for more and possibly guilt for not having the relationship will be there and it will cut to your very soul.  I’ve had relationships with people who passed that were from one spectrum to the other and none of them were easy.  They are all difficult and heart wrenching in their own way.  There will always be feelings of wishing you could ask or tell them one more thing.  Life goes on and as life goes on you have more to add to the person’s life that has stopped.

As my life changes I would love to be sharing it with all of the people that have passed on before me no matter how much of a relationship we had and it is difficult each time a milestone comes along.  It doesn’t mean that you have taken a step back in the grief process; it is just a part of life moving on.  A sign that you have moved on is to wish the person was there to see how and what you are doing.

Never Enough – Part 1

Something that I have learned in my journey is that no matter how many questions you ask, no matter how many times you tell someone how you feel, it is never enough.  And this is much stronger now that I have lost my Mother but having had the experience of loss before she got sick helped me immensely because I knew not to squander my time with her, instead take every minute I could get.

Sitting at the kitchen table with the lights on low, the warmth of familiarity, the cuckoo clock reminding us how late it was getting whether we wanted it to or not.  Empty coffee cups sitting in front of us waiting to be refilled.  And the smell, the smell of Grandma’s kitchen; it changed slightly with the seasons – gas stove in the winter and fresh cut flowers in the summer – but it was always sweet and reassuringly constant.

My Grandma T and I used to sit for hours talking into the night.  We talked about everything; her faith, childhood, children, struggles, regrets, loves and experiences.  I learned so much from her.  I knew that whatever I was going through she would have advice or a story that would put things in perspective.  When I was getting married and the plans weren’t coming out just how I thought they should she stopped me and told me very bluntly to stop whining and how she got married in a grey dress in the depression and they barely had enough money to survive.  Well, that puts things into perspective pretty quick.

Those conversations were some of the best moments of my life and I would give anything to have them again.  And even when those conversations were happening I had the presence of mind to know that I would treasure those moments.  I tried to soak in every word and every story because I knew that those moments wouldn’t last forever.  I knew that it would have to come to an end.  I just wanted to hang on as long as I could.  I loved her very much.  I relied on her and trusted her wisdom.

She taught me about regrets and how to avoid them.  Grandma had always wanted to learn to oil paint and write stories.  But developed macular degeneration before she did the things she wanted and was partially blind when she passed away.  With those regrets in her life she told me many times to not put off my dreams because the time will come when you are no longer able to do them.  She was a woman of immense faith that I thought could do no wrong.  Of course, now I know differently but I still like to hold on to that image of her.  She seemed impenetrable.  I had the privilege of sitting next to her at my cousin’s funeral one year before my Grandma passed.  I held her warm hand and I could feel her strength.  At one point I asked her if she was ok.   She said, “This is the 17th funeral I’ve been to in this church, including my husband’s.  I’m ok.”  I knew that she missed her granddaughter very much and never stopped grieving for her.

I can understand why there were times that people didn’t appreciate her bluntness and her honesty.  She always seemed to know the things that you didn’t want her to know.  She seemed to see right through you.  But what she said was always out of love and caring and you could take it as that or leave it.  She loved you either way.

When she passed away I was sure that I had asked and said everything that there could be.  It didn’t take long before I had the urge to call her up and ask her a question or go to her and ask her to tell some of the stories that she had shared, just to hear them one more time.  And now almost 7 years later there are so many things that I would love to talk to her about.  I need her wisdom.  I need her guidance.  I miss her so much.  How wonderful it would be to visit around that table just one more time.

Time Standing Still

After the fluid was drawn off the first time we waited. My sister and I checked on Mom as much as we could. I think she wasn’t sure if she should be annoyed or grateful. My Mom’s sister from Minnesota was also checking in. Mom tried to put on a brave front and we all tried to sound as encouraging as possible but it was a rough few weeks. I had been doing research on my own since the first day and hadn’t really considered cancer. Because of the lung virus she had years ago I automatically went to that thinking that it was back with a vengeance or had morphed into something new. The information that I found on what Sarcoidosis of the Lungs could do after 20 years was not encouraging either. It can cause the lung tissue to harden to the point of preventing proper breathing, Lung Fibrosis and there is no way to reverse the condition. There were also a few heart and lung issues that could cause the fluid. None of the options were good but cancer was still a side note that I hadn’t seriously considered. We had a planned family gathering just across the border in Warroad, Minnesota for July 4th. My family was coming from Colorado and Oregon; I was excited to see my cousins. My Mom had also been excited to go to her 50th school reunion that weekend. She had talked about it for months. Then the doctor called and needed to see Mom right away a few days before we were to go to Warroad. There were cancer cells in the fluid. But where was the cancer? Breast cancer is a typical answer but Mom had regular mammograms her last one almost a year before. The doctor scheduled another mammogram and a few other tests. And told Mom she couldn’t travel to the States. It was too dangerous. She tried to hide it but she was heartbroken. And so were we. That trip to Warroad was different. We had gone to Warroad without my Mom before but this time I knew without question that she would never go back. We went out to my Uncle’s (her brother’s) house and answered questions; very difficult questions. Everyone was concerned. Trying to understand what was happening and why. As we sat around the table I listened to my Aunts and Uncles tell childhood stories and I slowly looked around the table feeling time slow and my thoughts took over. I was incredibly sad as I realized that this was our new reality. Mom wasn’t coming back home. I went off on my own a few times to think and cry. I walked over to my Grandparents old farmhouse and sat in the yard trying to hear wisdom in the wind. I felt incredibly alone and desperately wished that my Grandma was there to give us some advice or just to talk to. I cried for all of us as a family and the changes we were all about to go through. I cried for my Mom and the sadness she must have been feeling at being left behind and unable to see her family when she needed them most. I cried for myself because I knew that nothing would ever be the same again. This was it. We were embarking on something huge and scary. I talked to my Uncle and Aunt from Colorado. With them living so far away I wanted to be sure that he understood more than anyone else how serious I felt this was. That my gut was telling me it was much worse than we knew at that time. That weekend was so very painful but it was also one of those moments in time where time seems to stop for you to soak up whatever you can get before it all falls apart. And thankfully I was aware of the moment – they are so easy to miss if you aren’t watching for them.

Mom’s Breathing

The weekend before her EKG appointment I decided to go and pick her up and bring her to our place for the night.  She’d only been to our new house once and that was when we moving in a few months earlier so I wanted her to come see it unpacked.  I hadn’t seen her in a few weeks but we talked on the phone at least once a week.

My Mom lived on the upper floor of a four-plex. There was an outside door with a small entry and then 3 steps up to her apartment door.  I opened the door to the entry and Mom was at the top of the stairs putting on her shoes.  Her breathing was different.  I had never heard her like this before.  She had never had asthma or any breathing issues that I knew of.  I asked her if she was okay.  She said yes but she could hardly get the word out.  I said, “I don’t think you’re okay.  Is there something I can do?  Do you need to go to the ER?”  She insisted that she was fine.  That this had started happening when she bent down to pick something up or put on her shoes.  Meanwhile I was looking across the street at the hospital and back at her in a panic.  Wondering what I should do.  Do I take her to my house or to the hospital?   Again she insisted that she was fine.  So I took her to our house.  I felt sick with panic.  My mind was racing trying to figure out what was wrong.  That evening I took her out shopping and she seemed okay but walked at such a slow pace I got even more concerned.   She didn’t have another episode at our house but I knew something was wrong.  I started doing research online that night.  I don’t believe everything I read but I like to use it as a starting point for questions.  I felt so helpless and I needed to feel like I was doing something.  Mom had Sarcoidosis of the lung, a nasty virus that can cause hardening of the lung over a long period of time, about 20 years before and it caused her lung infections every once in a while so I thought it might have something to do with that.  I saw the word cancer in my early research but ignored it because that just didn’t seem possible.  There was a very low instance of cancer in my Mom’s family so genetically speaking it wasn’t top of my mind.  And she was going for regular mammograms etc.

I talked to my Mom before her appointment and she said she wasn’t going to mention her breathing issue. I knew it was out of fear of what would be found and I didn’t blame her for being scared.  But I begged her to tell the doctor.  I knew something was wrong.  I also knew that she thought I was being pushy and controlling but I didn’t care.   This was too important.

My sister went with my Mom and she did tell her doctor about her breathing on that Wednesday and a chest x-ray was ordered for that Friday.  I took the day off from work to go with her.  I just had no idea what to expect.  Right after the x-ray the doctor requested to see her.  That couldn’t be good.  He kindly explained why she was unable to breath.  She had a litre and a half of fluid around her lungs.  And that it would have to be drawn off that day.  Well, the thought of having a giant needle put in through your back to drain fluid off your lungs had me feeling dizzy.  Mom just said, “I’ll be fine.  Wait for me in the waiting room.  The doctor knows what he’s doing.”  This fluid had been building up for at least a month; the fact that she had hid this from my sister and I really scared me.  What else was she hiding?  I took Mom home and hated to leave her.  They were going to be testing the fluid that they had taken.  The roller coaster had begun.