9-1-09 ChemoEd

Going to a cancer center exposes one to a lot of people, with cancer – imagine that.  Sitting in the waiting room is eye opening — sort of.  People seem to be optimists or pessimists, and a few Buddhists.  The disease perhaps has the potential to transform a person, but, more frequently it seems to just pull into relief a person’s pre-disposition — bitter and disillusioned people simply become more so.

I’m reminded of the story of a person, who knew themselves to be impatient to a fault.  But, who spent their entire life acting, pretending to be patient.  Patient with family members, and strangers alike everyone received the same count to 10, a deep breath,  a smile, and start again from the top.  And at that person’s funeral that person was eulogized, celebrated for their patience – which was all an act, a façade.  And so were they a fake, a fraud, or a patient person?

What I learned at ChemoEd:  we have to keep the bathrooms and kitchen even cleaner than we do.  That I will buy soft bristle toothbrushes and hydrogen peroxide for P to gargle with.  Probably I will add Cranberry juice to the shopping lists, just, because it is tough on infections.  Our diet is good and so we just need to keep it up.  Drink a gallon of water a day.  Don’t let the nausea and diarrhea get started.   And that we can’t really predict how P will react to the drugs – just more walking in the dark – but, hair loss and GI distress are fairly routine side effects.  This stuff is just plain toxic, it kills everything and we just hope it kills the bad more than the good.

Telling the kids

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 A-150x150excited 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 E-150x150things 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 EastWest-150x150thought 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.

 

Quiet-and-Sad-150x150When 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.

9.1.09 Chemo Education

We attended an hour of education today at the Cancer Center.  It consisted mostly of info about the specific chemo meds that are going to be used (Adriamycin and Cytoxan) and all the possible side effects.   I don’t know, but I would imagine listening to all the possible bodily functions that could misfire, might cause your run-o-the-mill Joe/Jane to hurl right there in the conference.  But being of sound gut and fairly sound minds, B and I held our breakfast quite well. (B  cooked this morning, so there was NO way I was going to give that one up without a fight.)  I pinch myself when I think about whether it is really me getting nuclear dyes and sugars injected into my rather virgin system.  There are meds for the side effects of the chemo and probably meds for the side effects of the side effects.  When I heard that one of the chemo drugs burns if it seeps out of the vein, and that it will make me pee red for 48 hours, I was immediately lifted to the land of Shangri La and attended to internal stimulation for a long slow motion second or two.

Actually our nurse was very knowledgeable about chemo therapy an about my case, which, as you will find out in another entry, was a huge relief to B and I, and actually the norm for this establishment.  This image is a purge of all the colors and stuff that might slough from my body in this process.

ChemoEd-150x150

I don’t know what to be scared of.  This will be my/our experience and unique to us.  I plan to draw during the infusion, and have been calling the port-a-cath a port-o-love.  The port was inserted about two weeks ago, it’s the round grey thing at the top right of the image below.

PortOLove-150x150

I had visions if small colorful hearts going into my body through the port to round up the disorganized cancer cells.  The chemo drugs are agents to help corral the cancer and evict it.  The first chemo date is 9/9, Wednesday at 10:30.

Off to Tucson

I found out the biopsy results while B was on a week long trip to Alaska.  My surgeon called Friday at 7pm telling me it was breast cancer.  I went to A’s softball tourney the next day and flew out to a pleasure/business trip in Arizona at 6:50 am on Sunday.  No one but my surgeon and I knew.

The day before I left for Tucson, I decided to write B a letter in spite of the fact that news like this in a letter is pretty lame.   He knew I went for a biopsy.  His trip home from AK and my travels to AZ had us in a million different time zones…well, ok, not a million but it felt like it because we were in the air at the same time flying to opposite sides of the country.  SO I wrote a “here’s what happened while you were gone”  letter, with only a paragraph about my health out of 4 juicy pages.  Other stuff included the condition of the house, what I was and was not able to keep up with in his absence, what the kids were up to,  stuff like that.  All I wanted was to hear about his trip with our friends in AK, and now breast cancer was inserted into what we would be talking about when we finally spoke.  CRAP.

I left the note on the table with the biggest bag of peanut M & M’s that I could find.  I think it was, like, 2 pounds.  I was grateful that I was going to Tucson to be with S,  but I was going so far away from the people who I wanted to tell the most.

Back from Alaska

Off to AK on a business trip.  16 years since my last visit.  This is a really cool trip.  I get to mix business with some pleasure and see some college buddies.

haines

 

I knew something was up, but, not really the degree of seriousness.  “P” and I had back to back business trips, I got home the day she left to a hand written letter:  “So my biopsy showed cancer in one area & suspicion — about another — lymph nodes were hard to poke and results were inconclusive.  I like this doc a lot.  She said, ‘We’ll take care of this’ — and ordered tests (CAT, MRI, Xrays).  Once they ‘stage it’ we will meet and talk about treatment.”

sitka

 

So, imagine the hardest kick in the crotch you’ve ever recieved and that is about how the news settles.  I’m completly exhausted from my trip and I’ve got this bomb.  And I’m single parenting — do I tell the kids?  How?  When?

Bob's King Salmon

Early thoughts

When breast cancer was confirmed after a biopsy, I immediately thought of a series of mandalas that I drew after I left Alaska.  This was 20 years ago at a time when I obviously needed self nurturance.

11-1-1988-150x150The writing below image 1 suggests that I was feeling pretty vulnerable and needed to take better care of my emotions.

Image 2 was about getting closer to the ground and absorbing earth energy.11-13-1988-150x150

 

I am struck by the parallels and differences between then and now.  Images 3 and 4 are ones I have reflected on often in the past 20 years, the ‘Me Tree’ (image 4) reflects the strength I feel when I connect to earth and acknowledge spirit.

11-13-1988b-150x150                        5-13-89-150x150

Now, 20 years later these 2 images are still so important to me, not because I need to work on patience or self love, but because they capture what I believe are my strengths.   Each step I take is deliberate and I have my family by my side.  Breast cancer is not just my diagnosis.  I have learned in the past month that my family, and those who love me all carry part of this with me.  That makes me feel so much less vulnerable than I was 20 years ago in a new state, not knowing anyone.   The Me Tree roots have established themselves well.