Month: October 2009

The Conundrum

B: We’ve gotten happy news lately, and we’ve completed the neo-adjuvant chemo.  Ironically this hasn’t been just butterflies and light.  From what I’ve seen,  P has been so focused on getting done with Chemo, that she kinda lost sight of the ball.  We’ve had to deal with a lot more, and different, side effects this round than any previous — even the first round.  It didn’t help that the doctors scheduled tests immediately after the treatment.  So, days that should have been spent in bed were spent fasting and traveling to and waiting for tests, some more than an hour drive from home.  Sure, the Oncologist dropped the happy bomb, that the cancer appears to be dead, but, she really didn’t help us understand what that means. I think that created a bit of false hope for P.  Similarly, the alternative health care providers were too quick to jump on the good news and encourage us to question everything, all of which distracted us from the path we knew we were on.  Point in fact Oncologists and Surgeons speak different languages.  Many Medical doctors are not holistic in their treatments and it is unreasonable to expect them to be. Alternative health care has its contribution to make, but perhaps should remember that Surgeons and Oncologists are professionals too.

I think we are settling down and getting back on track but the past week hasn’t been easy.

P: Reference has been made to my being something like Winnie the Pooh… so when I see a hive dripping with golden honey, I’m there.  Shiny things do that for me too.  Brother #3  has consistently told me to keep my eye on the ball since I was diagnosed.  He and our sister in law went through this about 9 years ago… B was right.  I stopped looking at the ball and was distracted by the glitter.  Almost like I was ignoring what I could see and feel.

We now have a bit of understanding that the PET scan (oncology ordered) looked at whether we eradicated the cancer.  It looked at my whole head and trunk to see that nothing responded to the radioactive dyes they injected an hour before the “shoot”.  The oncology ‘sight’ is set on this target.  Did she prescribe the right ‘treatment’ for this intruder?  Her exam confirmed the PET results.  What she was feeling must have been scar tissue.  From what we now understand, the PET results give no information to the surgeon except that progress has indeed happened.

A side note:  Did you ever have a really weird day or a headache and think  ‘I swear I must have a tumor the size of Chicago in my brain’ or something like that?  Well I have no excuse now for those moments.  We know that there is nothing growing in my brain (including new brain cells from what I can tell today).  I’m grateful to know that I apparently don’t have a brain tumor.  I doubt that PET scans will ever be routine as sonograms now are for pregnancy (don’t get me started on that one), but some people might like to know.  OR perhaps not knowing is better.

We know that the surgeon ordered the MRI to see what exactly she was now dealing with.  It is her job to get whatever we don’t want in there out.  Her exam had a very different flavor than the oncology exam.  Her feeling something still there and seeing the shape still somewhat distorted, though much more normal, gave her the first inkling that she still had a job to do.  As we looked at the ultrasound pictures from before and after, and at the radiologist comparison of the two MRIs, we came to understand more.  They were so specific to this breast cancer.   Is what is left benign or malignant?  How much lymph node involvement is there?  We don’t know from the slices of images that the miracle of MRI gives us.  We DO know that the radiologist saw a 4.2 centimeter mass in August, and now sees a 7 millimeter thing that may be the shrunken mass, or may have been obscured by the original very concerning mass.  We do know that chemo eats away (in a swiss cheese sort of way) at the cancer, and this has happened successfully.   The mass is more hole than cheese, so to speak.

One other thing that has became clearer is that the lymph nodes are a significant factor in the future of treatment.  A biopsy occurs during surgery.  The nodes get sent to the lab like a hot potato and analyzed to inform how many she should remove while I’m still on the table.  She may get all the information she needs at that moment, or it may have to be sent for analysis, results in 3 days.  Then she may have to go back in.  SO reconstruction at the time of surgery would not be the best choice, because once a beautiful job is done, it would have to be cut open again.  Once this analysis is done, we will know whether radiation is necessary after surgery.

I am writing all this down to hear myself think, and to give you some idea of how much we know and don’t know still.  Each case is so unique.  Kudos to all the patients in these waters and all of the people supporting them.  Kudos to oncologists, surgeons and alternative practitioners.  And kudos to whomever can help all of us navigate the seas between.

Surgery is scheduled for Nov 10.  This gives my body time to settle down from the chemicals.  I am grateful to think that I’ll be more than 14 days away from the last infusion a week from today.  It’s been 8 weeks since I’ve had a day 15, if you know what I mean.

We feel you

I’m having a tea this morning before we leave for the appointment with our surgeon.

I was reminded yesterday, and have been quite regularly, that amidst all the food, rides, chores, surprises arriving every day on our doorstep, we are significantly blessed with love and support from afar.

Late last night I awoke and could not get comfortable enough to get back to sleep so I went to the couch for a while.  In spite of my attempts to do whatever it took not to wake B, I failed.  After I changed into a cooler shirt, got back up to get some water, got up again to put food in the katz dishes so they’d stop acting like kangaroos (at 3am), I went back to bed since B was awake anyway.  I nestled in to his warmth and he put one warm hand on my head and an arm around me.  This was the grounding I needed to settle down.   I immediately thought of those of you reading this blog who either live far away or are just not in our immediate support group.  Just the fact that you are interested enough to keep up with this, you are like a cloak of reassurance supporting me and us along the trail.  Whether it is late at night when I cannot seem to get back to sleep, or while I’m out on a beautiful hike, or when the sad just has to release itself, if I remind myself that you are there, I am held by warmth and compassion.  That goes a long way for me.

You are all over the map, and I hope you know that we feel the thoughts, well wishes, prayers, light and positive energy that you are sending to us each day.  You contribute to an orb of light formed around our everyday comings and goings, and around our home as we regain our energy in slumber.

I believe that you wouldn’t have it any other way, that we are on your radar, in your prayers and thoughts, on your minds.  I know that you care about/love us.  I am not quite sure how to express my and our gratitude for that.  It is truly a bright blessing.

Good news & the more information we get, the more questions we have

Friday was a busy day.  We met with the oncologist and to our surprise didn’t talk about the PET results until just before we concluded the meeting.  She did an exam and believes all that she felt was scar tissue from the chemo.  The PET didn’t “light up” anywhere.  This is good.  Like so good that we shook the marbles in our heads for a second after she said it.  She seems to think that the chemo ate up the cancer like the orcas ate up that baby blue whale (thanks R for making that connection!!).  It seems that the cancer is gone.  While psyched out of our minds we found ourselves on the road to Bangor for the MRI, heads down as we met the next task.  Like there was not the time or space to celebrate appropriately.  Also, celebration feels a bit premature as we still have more before us.  We ARE grateful for this, mind you.

So then we went up to Bangor for the MRI.  The surgeon wanted it done at the same machine as the original. Wisdom there.  We arrived early and went out for lunch.  I couldn’t get enough hot and sour soup.  MMMMM.  The MRI went off without a hitch.  On the walk back to the dressing room I asked the tech what she thought all the clanging was about in the MRI and she said something about my molecules flipping back and forth.  B and I have a joke that it is just noise to remind the patient that s/he is in a tube.  

Back down for acupuncture, and thankfully he could see me early before A’s soccer scrimmage.  He did some energy work/massage.  The scrimmage was fun and I was disappointed that neither B nor I could muster an ounce of energy, except to get home.  The last football game would have to go down without us, to A and E’s disappointment.  They cooperated well enough with that decision and we made it home.

We have questions.  Lots of questions.  From the oncologist’s point of view, it goes surgery then follow up chemo/radiation depending on what the surgeon says.  From the acupuncturist’s point of view, if the cancer is gone, how much more has to be done?  From the surgeon’s point of view…we will find out Monday morning.  There is wisdom in the amazing strides medicine has made in the treatment of breast cancer.  There is not as much study on the neoadjuvent chemo approach, and this is what we will learn more about tomorrow.

Cycle 4, day almost 2

CIMG9232-150x150So here’s what I did all day yesterday:  I went to the infusion, rides by angels both ways.  S#1 arrived at my house right on time, all cheery and lovely.  She drove me in and stayed with me till I was all snug in my chemo chair with the best view of the beautiful gardens and fields outside the Center.  I drew my final infusion of the “red lady”, it became the roots digging in to find the rest of the disorganized cells.    I found myself visualizing this red agent of healing reaching far, searching, thinking that I really wanted more of it to go down into the disorganized cells, of course, less into the cells I want and need.  I would not say I dreaded this treatment, I just tried to stay on the trail. When S#2 arrived (the return taxi and companion) she made an entry into the blog for me…which you’ll see below!  A guest speaker.

I think B took on the anticipatory anxiety for me (what a guy).  I just took one moment at a time, enjoying the company of S and S the angels of the day who brought me to and fro.  There have also been many others providing food, calls, chores…and of course A and E rubbing my stubbly head and snuggling with me.

When I got home B was there for the hand off (he left work early…more Chemo Covad as he puts it), and I went to bed.CIMG9231-150x150 When I woke I had a headache and was completely warmed by the feline blob you can see next to me.  I was sleeping on my side, and they were in my lap, per se, and purring up a storm.  Chang Tzu (the siamese ‘head’ closest to me) was under my chin most of the time.  They know.

I had to remember that I’m also on a PET scan diet (only protein and fats) as the scan was the next day, today.  SO water was it for drinking, and I made some bland tofu and broth and a spinach salad with tomatoes and almonds to get me through the day.  I certainly didn’t feel like having many fats…bleeechh.

I was in bed watching an ocean documentary for probably an hour after dinner, and started dozing off right as the blue whale calf got attacked by the orchas…the most exciting part, of course… and I slept and slept.  I took some advil and that was it for the night.  This morning I can not eat anything, only water, as the PET scan is at 9 and the CT scan at 10 (for which I get to drink some lovely overly sweet drinks masquerading as lemonaide).  After that the shot of neulasta to enhance white blood cell growth, and I can be a normal consumer of whatever my heart desires!  But acupuncture is at 2, and he doesn’t really want a full belly…so I’ll have to restrain myself!

Geez, for day 2, I know it’s only 5:30am, but I am feeling guardedly well.  Mild headache.  Not bad.  Not much to ruminate about today, just riding the trail of appointments.  Thankfully I’m ending with acupuncture.  AHHHHHH.

last day of the infusion!!!

Written by our sweet friend S:

well this is my second attempt at using the laptop! somehow i erased my first draft but i’ll give it another try.  it is a most lovely day as i sit with sweet P for her last infusion.  it is the universe’s way of saying that she is in synch with P and the only way she can show her light, blessing and support.  good omens are angels, too 🙂  i’m happy that i will be P’s chauffer home today ~ yippie! i told P i would fly her home on silver wings. i wish i really could. P is drawing up a storm as i type.  i can’t wait to see what she creates.  time is moving on but sometimes it doesn’t go as quickly as we would wish.  pretty soon we will see the evidence of the “red lady’s” mission of peace into P’s strong being and body.  with all of the love, light and support sourrounding P and B and A and E-L, how could it not be right? signing off ~ time to fly sweet P home on those silver wings of mine.

Cycle 3, Day 14

Welp, here we are at the end of the feel good part of cycle 3.  This past week I have truly felt well and as normal as a bald woman can feel.  I went to work for a couple hours both yesterday and today, and it was truly great to see my colleagues who have been pulling for us all along the trail.  I even got a few work related things done!  It felt good to know my brain could still function in that capacity.

A loving friend came today to help me put the garden to bed, and another has been helping us stack the wood that we just have not gotten to.  The angels continue to fly around us.  I am in the midst of my intentional rest time right now.  Even if I cannot nap, if I am reclining, the katz make sure that I do not move for a good long time by either sitting on my legs, or wedging themselves on either side of me.

I just want to get through this last cycle of this phase so we can get on with things.  It feels like it’s been a long haul, and I’m ready to take the next steps on the trail.  We will keep you posted.

Walk4Hope

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You guys, check this pic out.  We had a gorgeous day for the walk!  Here is the team Patty’s People that you ‘ve been hearing about.  So many of us were like sausages with our tie dyed tees OUTSIDE our jackets and sweatshirts!  It was fairly chilly at the start but the love and walking warmed us up quickly!  The walk took in over $91,000 as of this morning, with $$ still trickling in.  Thanks so much for your support and to all of you who donated and walked beside my family and I.  It was wonderful to see colleagues and friends.

I’m feeling really good today and will be going to work for a couple hours on Monday and Tuesday this week, and on the days I feel up to it thereafter.   Fortunately I can do some of my administrative tasks from home between naps.  With infusion #4 coming up on Wed, I’m certain I won’t be back in the office for several days, but I have so much support at work and can take my time getting back in the swing.  I suspect that surgery will not happen until I’m well over the chemo, so I may have several days in a row that I’m feeling good once the initial fog lifts after day 7.  I’m hopeful that my response this cycle follows the pattern of the last 3 where I feel good after a week.

I’ll keep you posted on the next steps.  All the scans will take place the two days AFTER chemo, and the surgery meeting happens on the 26th.  We moved all the dates up, which I’m happy about.

Here is a pic of my sweet family.

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Waiting: a memory

As time moves closer to the end of chemo, we move closer to more scans.  B and I experienced some massive anxiety junk waiting for the ultimate scan that told us that this was not metastatic disease.  Our oncologist is very straight with us, which we appreciate.  When she first met with us in mid August  she asked if we wanted to hear all potential outcomes of the eventual PET scan.  We asked her to sock it to us.  As she was talking about the metastatic side of things she mentioned that we’d be looking at “quality of life issues rather than longevity”.  It was basically in our face that this could be or could have progressed eventually into something we did not really want to have to deal with at this time in our lives.

My Winnie ther Pooh tendency was seriously challenged between that conversation , the PET scan and the results conversation.  In fact right after the scan, I left the building and the skies opened up.  The walkway had a long roof over it, but I could feel the mist from the down pour.  At that time, I was so instantly carried to visualization that I saw in my mind’s eye the rain washing my body inside and out.  I was walking with my face to the sky, probably smiling like I do when I’m oblivious to others, and a man came from behind and said something like “perfect timing” with a disgruntled Calvin (& Hobbs) look, as he ran to his car.  Our different response to the rain was intriguing and made me smile.  I held my arms out to my sides, palms to the sky and the rain as the man pulled out of his parking space and took off.

When I get blasts of the fact that cancer can be a life threatening disease, I feel a small charge, I acknowledge the fear.  Life can be life threatening, so this is not a new thought, just an in your face kind of thing, but anxiety is NOT something I think about much in my personal life, or live with often, thankfully.   It’s an awful thing that takes over one’s every thought, cell, dream, heartbeat…it is a full body experience in the negative zone.

The PET scan was on a Monday afternoon, late August.  B and I both thought we heard the secretary tell us the appointment to review the results was Friday at 9.  That’s basically 4 days to wait for results.  Have you ever waited for significant results?  I remember asking someone who was once waiting for HIV test results if she even considered that she might not be HIV positive.  She said that she never considered it once the blood was drawn.  She had herself in the grave until the results told her that her death would not be from HIV/AIDS…at least not this time.

Here’s my journal entry 2 days post PET scan:

“UUUUUUUUUUUUUUUUUUGGGGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHHHHH!

I received a call at 9:50 this morning from the cancer center telling me that I missed a 9:00 appointment with the oncologist.  CRRRAAAPPPPP.   I swore that the secretary said Friday.  I immediately called her to ask for a reschedule and she said there were no other times this week, and that the doc was off Thursday… but she’d try to get me in Friday AFTERNOON.  I called B and the sound coming from his end was eerily similar to the one I made when I got the original call. Sort of like the sound you’d make if you were climbing a mountain and slid back down to the bottom one step from the top.   GEEEZ.  I feel so frustrated because we just want to know and get on the trail, so close yet so far.  Now we must wait for a call with a different appointment.”

“Acknowledging the negative energy from stuff like this and moving on is a delicate art.  There is lingering disappointment, a heaviness in my heart.  At the same time, it is what it is, just like this cancer.  Moving on to other things will bring more fluid energy into my mind, heart and body, but boy, I could hunch over that misery and roast myself in self deprecation and regret like a marshmallow over a campfire.  I don’t have room for that right now.”

The new appointment was on Friday at 3:45 (couldn’t they make it any later??).  I went to work and planned to meet B at the Center.   I was working to get the necessary tasks of my job farmed out, I was waiting for the appointment, people were asking how we were doing.  I received a call from a loving colleague and it just sent me over the edge.  I started crying, shut my door, called my boss and between sobs told her that I was going home.  I took out my pastels and could not even find the right colors, but blasted out the energy as my tears dripped on the paper.   Good thing I was using oil pastels.

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In the midst of the drawing, a call came to my cell phone.  It was B.  He caught on pretty quick that I was melted down.  (wicked smart fella he is)  It was just what I needed to calm, and ultimately I finished expressing, and left.  When I got home, I sat on the deck in the sun until B came home and we left for the appointment.

Waiting for pathology reports ROTS.

The short story as you probaly know is that the PET was negative.  YYYYYYYYYAAAAAAAAHHHHHHHHOOOOOOOOOOOOOOO!

If you want to read the longer story, here it is.

The nurse came out to get us, and was either struck by our incredible charisma and beauty, intimidated by B’s long hair, having a hot flash or SOMETHING. (Well, we probably did look like we had those slinky eyes or something after all the anxiety junk…)  She said that someone went over my labs with us Wed (wrong) and that we probably didn’t need this appointment (WRONG).  I said something like “We’re meeting with Dr. L to talk about PET results.” and she looked at me like I was speaking MARTIAN or something.  This was very unusual in our experience thus far at the “center of excellence”.  (Truly it is an amazing place.)

SO, nurse X met with us and assumed out loud that we were post surgery. (WRONG) We corrected that, and they she reviewed meds, took my blood pressure (150/70…WOW, for someone who is usually dead under the cuff …102/62 is a norm for me…) and other vitals, and just randomly asked questions.  I got her updated about the port installation and then she asked if I knew how that was going to work.  Bob and I kept glancing at each other like OK, this is either a result of her putting her panties on backwards or she’s nervous about the information in the chart.  I full heartedly believed it was her bad hair day.  I think she felt good that she could educate us about the use of the port.  She left and we shook our heads and made sounds like Buggs Bunny did after getting hit in the noggin.

Dr. L was a welcome smile as she came through the door.  “I’m glad you insisted on this appointment.  I knew my patient cancelled and had no idea you were here.”  (another jolt on the weirdness meter) She said a few other things and I don’t know about B, but I went into Charlie Brown teacher mode “Wa waaaaa, wa wa wa waaaaaaaaa until I heard…PET scan was NEGATIVE.”  She kept talking but B and I went into slow motion looking at each other, high fiving, and I immediately felt my blood pressure drop back to the dead zone.  You know I use that dead term jokingly, right?  (When I was 9 months pregnant and had a 110/60 blood pressure B shook his head and asked if I was dead.)  Anyway, meeting again with Dr. L confirmed our belief that she will be a cool and intelligent partner on the trail.

It’s so interesting how eerily easy it is to feel grateful about the news that this cancer is local and systemic instead of metastatic.  As soon as we got in the car we called the kids and we all celebrated in gratitude and relief.

So here we are.  Mid cycle 3, one more infusion next week, and we just received dates and times for a PET scan ordered by our oncologist and an MRI ordered by our surgeon.  I wonder what it will be like waiting.  They made the appointment to review PET results the DAY AFTER the scan.  I hope we remember to go.

10/13 Simplicity on a better day

A rainy day, a kat on my lap, a big fire in the fireplace.  A good cry this morning.  A visit from my loving twin brother who arrived with a new, sure to be famous (at least in our house) chili for dinner.  Acupuncture relief.  A wonderful nap with my furry companions.  Laughter.  Several supportive conversations, one from a sister survivor.

Talking with others who have gone through chemo certainly puts things into perspective for me, and that’s what I really needed this week.  I’m not the only one who has had to deal with this, brilliant, I know.  It definitely will pass.  Brain fog happens, low energy, not knowing what one wants or does not want, not being able to tune into one’s body messages.  There’s an end to this.  Hope.  Thank you, L,  for telling me more of your story that I may understand my own better, and see the forest through the trees.

SO, writing this blog is not exactly like journaling, but there is an element of exposure when I think of others, unknown but known, reading our story.  All I ask is that if you get the sense that I’m slipping into brain mush and writing Dear Diary material, please exit and “Don’t pay  attention to the (wo)man behind the curtain!”

Today is a better day.