Category: Memory

Understanding what we were contending with took some time.  The short story is that our surgeon pegged it right from the start and this was seconded by the surgeon in NYC from whom we sought a second opinion.  The longer story is that I underwent an MRI, a CT scan and a bone scan in one day, and metastatic disease could not be completely ruled out because of some spots that showed up on a rib, my kidney and adrenal gland.  This lead to a PET/CT scan.

MRI/BONE/CT scan day:

MRI  At the first hospital I had an IV port put in my right arm.  The MRI machine has a special table for breast shots.  Basically there are two cups at the head of the bed.  One simply just hovers over and aims for the cups.  “Put all your weight on your sternum.”  Wow, what a concept.  Arms were over my head with the contrast IV easily accessible.  It was actually not too uncomfortable.  I was warned that it would be loud.  As each different sound came I had different visions.  I focused on the whoosh at first and imagined great waves washing away the cancerous cells and taking them way out to the cleansing sea.  The clanging reminded me of a rain dance where all my supporters were stomping their feet, pounding their fists on the ground.  The last sound that I cannot really describe had me thinking of pac-man eating up disease, an image shared with me by a sister in remission.  The contrast was put in about half way through the procedure.  I was told that the speed at which the contrast shows up in each area is indicative of how much cancer there is…or something like that.

Bone Scan injection  After B had lunch (I had water) we went to the Nuclear medicine area at the other hospital and another IV port was inserted.  The tech was extremely pleasant.  He used my other arm, noticing that I’d “already been abused” today.  He injected one syringe of clear liquid, and of course like most others I asked if I was going to glow in the dark.  I was to come back 3 hours later for the scan and was told to drink a lot.  The CT scan was going to require drinking of a special concoction, and he said that would suffice for the required liquids for the bone scan.

CT Scan We went downstairs and I was promptly given a choice between the flavors of lemon aid, strawberry kiwi or fruit punch for the CT scan.  The lemon aid was tart and sweet and B chided me to chug the thing rather than torture myself.  An attendant came out 45 minutes later with another tall drink and said I had 45 more minutes to let this all get into my system.  I chugged this one too.  It gave me the willies.  I was so done with drinking by the end of the day!!  When I was called in for the CT scan, B had to stay in the waiting room.  The scan took like 5 minutes.  It was interesting to see the machine, and to hear this English male voice tell me to hold my breath and release as the scanner moved me through.  They scanned my whole trunk from shoulders to pelvis.

We had about 1 hour to wait before the bone scan was scheduled, so we took a nice walk around the grounds.  A wonderful golden retriever (I think his name was Frasier) was outside and I got to mush him a bit and talk to his human grand-father.  The day enabled B and I to have conversations that we never seem to get to in our everyday life, and this was a good break for us.

Bone Scan We were accepted 5 minutes early for the bone scan.  It was so well choreographed.  The tech was waiting at the elevator for us and took us into the scanning room where there was a table with a scanning device hanging over it.  I lay down and it basically took me under the scanner very slowly. There were computer monitors all over for us to be able to see the image.  Tech told us that it would look like sparkling stars, with dense areas like my bladder and maybe my toes.  When I started I was completely under the scanner.  It moved down to within a couple inches of my face and the machine slowly moved me out as my entire skeleton was scanned.  I didn’t know what to look for, so I just enjoyed seeing my skeleton.  B was able to stay with me for this one which I appreciated.  He was marveling at the constellation that was me on the screen.  She also took images of the side of my head.  We got to leave 10 minutes later after the radiologist determined that she got good shots.  I must admit that I looked at her to try to get a glimpse of what she may have seen in the images.  She is not a diagnostician, I know that, but I can’t help but wonder what she was thinking.

I guess I’d describe the day as surreal.  B and I both seemed calm and present all day.  I recall saying that I felt and looked healthy.  I cannot imagine cancer spread throughout my body.  I scanned my body several times for the areas which may be affected by abnormal cells.  As hard as I tried, I kept seeing healthy cells in my organs; in my bones…my visualizations were as calming as my breathing.  I am very aware of how focused in the moment I am.  As we drove home, B asked what news I hoped to hear on Monday.  My first answer was that it has not spread.  My second answer was that it was already gone.  He said “that would be magic” and I said “I believe in miracles”.

For the first few days in Tucson, the only people who knew about my diagnosis were my surgeon, my primary care doc, B, S (the friend I was visiting in AZ) and I.  After the visit, I attended a work related summit at a very luxurious resort.  It was from that spot that I called all 4 brothers.  It was time for me to put the word out and they were the first ones I needed to talk with.  I was lifted after talking with them all in spite of the tears their love brought on. To some, my family’s support is amazing.  To me it is what I wrap myself in whenever I am in need.   I am so grateful for the love I share with my family.

After those conversations, I went out to dinner with some colleagues that I’ve known for many years. We had a delicious dinner where I exclaimed that the roasted beet and goat cheese salad I was eating was making me feel something inappropriate.  We all laughed.  The next night, I recommended that salad to others and I totally got into imagining them all in their own sensual bliss.  It made me laugh out loud.  It reminded me of a part in the book Like Water for Chocolate where our main character makes a sensual quail with rose petal dish which affects those eating so much that her sister runs out to the outside shower, stripping along the run as she tries to cool herself off, only to set the shower on fire.  She runs out and gets picked up by a Mexican on horseback and rides off all naked into the sunset.  It struck me as so funny.  Everyone was practically licking their plates. Good medicine.

Once we had all the scans done (that’s ANOTHER story), I decided to take a trip to NY to talk with Mom.  I hadn’t told any of my NY people because I did not want it getting back to Mom through the love mill.   I knew that this news would be better understood if she could see me.  Both of my kids had stuff they had to do at home, and honestly, I think they both needed a break from me.  This dose of mortality is too close for comfort no matter how you slice it. 

The ride down was beautiful.  There are not many cars on the highway at 6am on a Saturday.  I put in JT’s greatest hits and did one of my favorite things.  I sang at the top of my lungs practically all the way south.   Thanks to the luxury of long legs, I was able to get in the groove, especially at times when my knees could navigate the straight-a-ways.  “Fire and Rain” and  “How sweet it is to be loved by you” had me just rockin’ out.  The performer in me especially loved it when a car would go by.  The rest of the ride was rather boring.

 When I finally got to Mom here’s how it went:

 Mom: Sweetheart, it’s been such a long time since I have seen your hair that short! It must be easy to take care of.

Me: Yea it really is, I love it.  Mom, I have something I came down to talk with you about, it has to do with my health.

Mom: What is it sweetie?

Me: I was diagnosed with breast cancer this summer.

She looked at me with eyes losing their sight to macular degeneration, and a mind that goes into stall sometimes.  It looked like the information was filtering in slowly.  I reached for her hand, her skin was smooth as silky tissue paper.  She squeezed.

Mom: breast cancer?

Me: yea, thankfully it has not spread to other parts of my body. 

Mom: well that’s a relief, so it’s just in your breast?

Me: And probably in some lymph nodes. Remember when Pop got his nodes out after that melanoma?

Mom:  Yes.  So can they take it out?

Me: I’m going to have chemotherapy first to shrink it down so the surgeon can get it all.  Do you remember when P had breast cancer 9 years ago?

Mom: I do remember that. 

Me: You know she would be happy to talk about it if you ever want to learn more about how hers went.  I feel so healthy, isn’t that ironic? That’s why I cut my hair so short.  If it falls out because if the chemo I didn’t want to deal with big clumps.

Mom: That was a smart idea. You have beautiful hair.

 So that was that.  My mother is an angel.  She always has been.  Now she is a cute angel.  Her hair is always flyaway.  She has an innocence in her eyes that I’ve come to just adore.  The fact that her mind is blank some of the time, makes me sad, but she is not in pain. I asked her what she thinks about when she is quiet, and she said ‘nothing at all’.  She describes it as just disengaging for a time.  She completely responds to my affection when I visit.  I crawl in bed with her in the mornings, we laugh and snuggle.  We hold hands all the time.  She laughs at herself, and at stories we remember together.  She loves her family more than herself.  Being her only daughter is an honor.  She is such a beautiful person.

 Now that Mom knows, the world can know about my diagnosis for all I care.

The doc said I’d hear the results of the biopsy Friday, two days before I left for Tucson.  She called me at the end of A’s softball practice.  I think it may have been more difficult for her to tell me than it was for me to hear.  I don’t know when it happened, but I think somewhere in my grey matter, this idea had been brewing for some time.

Without being able to talk with B immediately, I thought and thought about whether to call him in AK, with no guarantee that his phone was on or able to get a signal. What time was it there anyway?   I did NOT want to tell E before the birthday sleepover at his friend’s house, nor was I going to tell A before the big 18U tournament.   I ended up leaving a voicemail for a colleague/friend who is a breast cancer survivor.  She left me a voice mail saying how sorry she was and that she absolutely wanted to support me.  She ended the vm with “love you” which is not a phrase I speak much with colleagues, but it did give me the first suggestion of grief.

I spent the next two days mulling this breast cancer diagnosis in my head.  I wasn’t exactly fixed on it, but definitely distracted by it.  At the tournament on Saturday I tried to say focused on the games and the girls as much as I could.  I found myself saying “I have breast cancer.”  “I can’t believe I have breast cancer.”  It is so strange to wrap my brain around this.  Who should I tell at what point?  I wanted B.  I wanted this to go away.  I didn’t want my kids to be living in fear.  I needed to start processing it out loud at some point, but our situation was such that it was not the time.  The universe had other plans and at the time and I was ok with that.  Didn’t like it, but I was ok.

For a short while our children were on the east coast and their parents were in the air going in opposite directions.  While up in the air between Portland and Chicago, I saw a plane and imagined it was B’s plane.  I had not seen him for probably 2 ½ weeks and wouldn’t see him until I returned a week later.  It didn’t seem like a long time for people married 19 years, but under the circumstances it felt like a year.  I missed the comfort I felt around him.  Our bed, usually a place where we find comfort together, became a lonely place, even with my warm son sleeping so soundly next to me.

Loving someone like your own child is such a complex and beautiful thing.  I do not want my children to hurt but pain is part of life.  When they were younger, it used to be very easy to comfort them.  Yet, this is not something a hug, a band-aid or a piece of ice will comfort.  I was fairly preoccupied.  I missed B a lot and he was basically not reachable in Alaska doing exciting things, and learning about how life has treated our friends for the past 20 years.  Come to find out everyone’s life was complicated by something…and so it was with us now.

I have no lingering thoughts about my own death except that it will happen.  I know, brilliant, eh?  Well, it helps me to think that way because my ongoing conversations with A, E and B will have to acknowledge this at some point in our lives. It seems more like a conversation over a life time rather than an event.  And so it goes.  As with most any child, it is such an uncomfortable and daunting topic for them, and for us at times too, I’m sure.

So B and I had a decision to make.  How and when should our children hear the news?  B called me during the conference and we spoke about the fact that he was going to tell the kids he wasn’t going to the mountain that weekend, so we could be together, and that perhaps we should tell them that night.  I’d be home in two days.  “I think it might help them both to let it perculate before you get home.  Then our time can be in support and not devastation.”  There was so much wisdom in that, so we planned to have a call when the kids could both get on an extension.  No one was home at first, so I called A’s cell phone: “What is it Mom, are you ok?”  I just said I wondered where everyone was, and she explained that she would be home later.  She asked me after the initial mammogram if I had breast cancer.  “Mamograms are routine at my age sweet heart…” was my only response. She suspected from that point, more than a month before the diagnosis confirmed her fears.

SO I called late on Thursday night.  A answered:  “What’s up mom?  Is that really you?”  I asked her to get E so I could talk with them both.  When I suggested that they each get on an extension she said “oh yea, I forgot we could do that!”  I chose my words carefully.  I didn’t feel the need to fill the dead silence, but I did feel like I had to install some hopeful thoughts, sort of like blowing an annoying fly away each time it starts to hover around your face.  “I’m still me you guys.  I wanted to be there so you could see that, but right now you have to draw on all the love we have stored in our hearts to feel and trust that.  There’s nothing I want more than to be holding you both right now.”  I heard some thing on the other end, sniffling, clearing throats.  “Would it be better if I spoke with each of you alone now or together?”  Someone said “alone” which was barely audible.  E hung up.

Time with A:

“A is that you?”  I acknowledged how intuitive she was and that I suspected she has known this since my call to go back for the second mammo.  “Yea, but I didn’t want to think it was real.”   “I appreciate that sweet one and it was a real good way to protect yourself from thinking the worst.  Now we have the job to understand what exactly is real and move ahead with definite steps together. We will have to support each other when we are bummed about it, and continue to make opportunities to laugh and live.” She is so mature and deep.  She will internalize this to some degree. I hope she decides to play soccer.  The varsity coach is really excited to have her play for him.  She’s an aggressive defensive player and I really think it will help her to stabilize the energy.  I think her strength lies in her ability to think.   Unlike some thinkers, she has shown us that she can process feelings over time.  She’s so creative, and I believe this will really be helpful to her process.        This is what she drew.

Time with E:

“Hey Buddy how are you doing?”

“Mom, thank you for telling me. I love you so much.”  He was thanking me, can you believe that??

We spoke about how to manage the myriad of feelings and how important our optimism is.  He’s certainly a ‘G.O.’.  “I wish I could be with you right now Mom” he was trying not to cry.  “Go ahead and cry, baby.  We all need to let it come when it does.  Don’t forget that we are always with each other.”  “Yea, Mom, my trap door is open, is yours?”  (Trap doors are things we imagine in our heart and when we are together we open them up and hold our hearts together to fill them so that when we are apart we have all that lovey juice to run on until we are together again.)  “Mine is too, baby.”  “Thank you for telling me this.” he said again.   He drew a two sided image of a tree loosing its leaves like it was crying.  The other side was dark and confusing.

 

I urged both kids to move through whatever they were feeling and not let it get stuck.  To talk with anyone they felt comfortable with, us, their uncles/aunts, their friends, their friend’s parents, our family friends, coaches, teachers, each other.  To draw or write, or anything that will allow a flow of the energy.  I told them that a lot of people will help us learn what we need to know and make decisions. None of us is alone in this.  They were crying and I was on the other side of the country.  Suddenly Arizona and Maine were at the same time so far apart and so connected.

 

B got on the line after that and said they both went upstairs.  The next morning he told me they were making art in A’s room, and that they were hugging each other when he came in the room.  They watched some movie that night and slept on the futon downstairs close to B.  He said that E decided not to go to the mountain that weekend as well.

At that point I was just applying everything I had to not get caught in the undertow.  I didn’t know how else to be.  Well, truthfully, I guess I did know how else to be. When others were around it seemed easy.  When I was alone I didn’t fight it.  Part of riding the horse is feeling.  I have thought more about dying ever since Pop died two years ago.  It’s like I’m just awake to our mortality more than I was.  I want to know other’s thoughts about it, I want to talk with dying people (I’d hoped S’s husband would still be around when I got to AZ, though the odds were extremely slim), I was a facilitator of support group for the providers of hospice services for a reason.  Hearing stories of people’s transitions fascinates and comforts me.

 

When I’m sad I think briefly about the possibility that I may not get to see our kids move on to their independent lives.  Now this is something that I would feel sad about whether or not I had cancer.  The idea of growing older with our children is something most parents take for granted.  I want to know the partners they choose.  I want to be there as their constant unconditional support and their guide when my experiences may help them navigate their own lives or just to be silent on the phone when they call me with a heartache.  I want them to be able to call me, like I did Mom when I had no idea how easy it was to roast a chicken.  I want to send them care packages. I realize that our lives can be over at any time, so this is not necessarily a new thought, but one that returns when sadness hits.  Our midwife for A’s birth said something to me that has stayed with me all this time.  We asked something about what to do if she didn’t get there in time.  “If I do my job right, you won’t need me.”  I feel like B and I have given our children some important things.  Some of the things, like structure or saying no to a request, they don’t always like.  What kid doesn’t complain about chores?  We’ve encouraged them to have a process before making decisions, weighing the risks and benefits.  We’ve encouraged the development of pragmatism, if that is possible.  We’ve done feelings, and were together with our family for Pop’s amazing transition with 13 other family members all laughing and crying together.  Not many people want to get into conversations about death or mortality.  Seeing Scott and Pop dying, going through the deaths of our animals together, talking with whomever will engage, all helps me to just embrace it as part of the circle of life.  How do others balance the tension that must exist to some degree or another in all of us??

I have often wondered what I’d do if this happened (cancer).  I have no question in my mind that I will do treatment because my children need me as long as I can be here.  If I were 70 or 80 I may have a different outlook.  I want to join the crowds of women and men who call themselves survivors.  There is such happiness on their faces as they march forward.  When I see myself getting through the treatments and in remission I feel happy and want constant observation.

TEXT: Me to A the morning after the phone call: I love u sweet p.  I hope u r doing ok, and that telling you last nite was the rite thing for all of us.  Ur in my thoughts w/oodles of love. Mamabia

A:  I’m glad you told me momma, I love you too J can’t wait to see you

I lay in bed visualizing light around my body.  I cradled my breasts in my hand infiltrating love.  I am very aware of the biopsy area, occasional twinkles coming from the left side.  I envision my body containing the cancerous cells and holding them until they can be evicted.  I visualize holding my children close so that our trap doors bang into one another and flood each other with love.