Month: November 2009

11/27/09

I never thought I’d be on the highway on Black Friday, but there I was.  A was driving, thankfully, and it was POURING.  I had my drain out today.  E and I called B from the road after dropping A off with a friend and we ordered a nice fire and squash soup from the freezer…both to be hot when we finally got home.  Just a quick stop at Dick’s to pick up a new snowboard and it was 4:15 and DARK.  We got home to a warm fire, bubbling soup and B’s delicious nachos.  I delayed the gratification of my first shower in 2 1/2 weeks until my belly was  full and I had time to check in with B.

The visit with our surgeon went well.  She had the drain out before I could finish my salutations.  (I was HOPING beyond HOPE that it would not be as painful as the removal of a running stitch that I had in my back  years ago.)  We reviewed the pathology report from the axillary node disection.  Initially the pathologist only split the nodes in half and concluded that there was not activity in them.  The surgeon requested that he slice them up and look microscopically, and so the addendum to the report indicated that there were 8 nodes, 3 of which had activity, 5 did not.  This was totally enough information to tell me/us that we made the right decision to have them removed.  At this point we are working on a microscopic level rather than a palpable level.  I appreciate our surgeon’s attention to detail.  She is a pony that I am so grateful is in our stampede.  She left me with a bandage about 2″x2″ over the hole where the drain went in just above my last rib and that was it. Follow up visit in 3 weeks just to check on fluid build up.  It felt like I left her office without an appendage.

The unknown now is simply whether 7 out of 12 nodes having some traces of tumor cells is enough to warrant radiation.  I am celebrating that 5 out of 12 had no activity.  That feels like good news to me and I just want to acknowledge that.  We meet with the oncologist on Tuesday morning.

Oh yea, the shower!  Glorious, I must say.  It was my first time since the mastectomy that I could actually see the whole scar.  The only bandage was over the drain hole.  No tubing.  No pads.  Nothing but me.  The warm water and steam felt wonderful.  Between the soup, the fire and the shower, I was sufficiently warmed to do the dozen or so arm exercises recommended after mastectomy.  I was surprised that I COULD do some movements, and more surprised that I could not do others.  Lying on my back in the snow angel position, I cannot pull my left arm up further than shoulder height today.  It gives me something to strive for before there is enough snow to make my first angel of the season.

Giving thanks to the pumpkin pie maker

Thanks to all of you, our friends, our family, katz, angels and ponies.  Thanks to those who have gone before us on this path and those who are dedicating their lives to breast cancer awareness, research and treatment.

Thanks D and W for these contributions.      

pumpkin-pie-maker-150x150Twas the night of Thanksgiving,
But I just couldn’t sleep.
I tried counting backwards,
I tried counting sheep. 

The leftovers beckoned.
The dark meat and white,
But I fought the temptation
with all of my might. 

Tossing and turning with anticipation,
The thought of a snack became infatuation.
So, I raced to the kitchen, flung open the door,
And gazed at the fridge, full of goodies galore.
Gobbled up Turkey and Buttered Potatoes,
Pickles and Carrots, Beans and Tomatoes. 

I felt myself swelling so plump and so round,
‘Til all of a sudden, I rose off the ground.
I crashed through the ceiling, floating into the sky,
With a mouthful of pudding and a handful of pie.
But, I managed to yell as I soared past the trees…
Happy eating to all – pass the cranberries, please.

Eye on The Ball (reprise)

Keeping stride with the whole process from diagnosis of breast cancer to life beyond treatments is a skill we are developing slowly.  We don’t know if it will help anyone to hear our thoughts on this, but wanted to put some together.

B: I think that once they stage the cancer and define the treatment plan it is important, as a participant, to not listen to the results of subsequent tests or pathology reports.  OK, let me explain.  Our Oncologist asked us at our first meeting if we wanted to hear the “worst case scenario”.   P asked for it and so we got it.  Once was sobering, but fine… I think the valuable question to ask when the Dr. has new test results is “Will this change anything in our treatment plan?”  If they answer no, then ask yourself do I really need to know this?  How fragile am I at the moment?  If the answer is “yes”, then either for good or ill you have to go in where angles fear.  The emotional highs and lows make the trip harder.  In order to have the energy and the optimism necessary to stay on track I think it is important to control the information you take in at least while you are in the middle of the treatment.

P: I think I mentioned a few entries ago that I’m learning what to pray/wish for.  ENDURANCE not test results.  When people have seen or heard me post surgery many have been surprised at the fact that I was up and about, or the sound of my voice.  Some actually tried to use the word ‘normal’ in a sentence like “you sound…….normal”.  This I think was the result of experiencing how the chemo affected me, and getting stuck there in sympathy or love.  I had frequent reminders from some that this will pass, you will come out the other end, keep on truckin’.  Do marathon runners hear the fans when they give them encouragement at mile 10…mile 17…mile 20?   Do ironmen and ironwomen hear us when we shout encouragement after the grueling swim and before the cycle ride?  I think they do, they must or else how could they make it to the finish line?  Intrinsic motivation may do it for some, but crap, I could not do this alone.

B: I am not a long distance runner. I’m a sprinter. So these metaphors of endurance are daunting to me. Obviously it is important to play to ones strengths. And so for me, I set my sights much closer in, about 5 days. I can sprint through 5 days. So, when we were dealing with the Chemo, the 2 week cycles, broke down into 5 days of being “ill” and 5 days of feeling progressively better, with 3-4 days of slop. Similarly, I broke surgery up into a set of sprints that I could manage. The metaphors are important so important that you need to pick ones that really work. Too, I haven’t felt the need to argue or philosophize about the difference between our metaphors. Cancer is a big tent, and “Whatever gets you through the night.”

P: At first diagnosis when I was incubating in Tucson, I was so focused on getting the word out to loved ones and learning about the value of second opinions.  It WAS the test result that changed the course of our lives.  It was at that time that we’d heard the word “neoadjuvant” for the first time.

At the first neoadjuvant chemotherapy infusion I was focused on my  reaction and got busy coping with the various and sundry effects on my body, mind, spirit. I tried to protect my loved ones from it to no avail.  WE were in this together, it was not just me.  At subsequent infusions I remained focused on making it through the most challenging first 3, 7, 10 days with something in tact, maybe it was my dignity.  Every once in a while I’d check in with my body and thought I could feel progress on the size and shape of the tumor.  But most of the time I had my head down like a good Taurus and was focused on one thing.  At that time it became difficult to see the ball.

I emerged on day 15, cycle 4 feeling a huge sense of relief, and found myself going under the microscope again for tests, scans and meetings with oncology and surgery.  It was a relief to hear PET scan was negative again, it was a relief to hear that perhaps what remained was scar tissue, it was both exciting and disappointing to hear comparisons between early ultrasound/MRIs and new ones, so much progress and yet concern still remained.  It was both expected and disappointing to hear that mastectomy was the next step on this long and complicated path.  But it was NOT complicated for the providers.  This IS the treatment for this stage and type of cancer.

We thought about second opinions, at what point are they moot?  If things came through negative all the way, I’d want to be really sure. BUT pathologists spending hours looking over microscopic cells, normal ones, chemo affected ones, ones that still were tumor affected…what would another opinion tell us?  How likely was it that a pathologist would mistake a health cell for an unhealthy one?  How long did we want to wait for the next phase of treatment waiting for more results?

After mastectomy we and I felt such relief.  Well, I think B and I did.  The kids only saw a body that was unfamiliar to them, and I wouldn’t call their experience relief.  It was an aggressive way to rid my body of this cancer.  SO was chemo therapy with Adriamycin and Cytoxan, very aggressive drugs.  Why then would we even stutter and not follow through with recommendations for an axillary node dissection when the tumor cells were still floating about?  I think it was during that conversation with Surgeon that I wondered why the hell we would step off the path?  I’m recovering from mastectomy, why not recover from both at the same time?  At this end of surgery, I’m SO glad we made that choice…

Discussion with oncology identified that the only thing in question is whether or not to use radiation in addition to the final chemotherapy.  THIS would be determined by the lymph node involvement.  Chemo therapy is 12 weeks at this point in the treatment regime.  It’s so easy to get caught up in the 12 weeks and lose sight of the ball again.  12 more weeks without hair, 12 more weeks with questionable reactions, 12 more weeks of uncertainty about whether or not I could get back in a routine about living rather than treatment.

B: One of the side effects I’ve noticed for myself, is disrupted sleep, and cancer nightmares. The nightmares are sometimes just a continuation of P’s situation.  Sometimes they are fears for myself or other loved ones. I’ve mused over the years that what I fear isn’t death, but infirmity, incontinence, and incompetence. I think that our cancer fight brings that into stark reality, though, it isn’t as easy to say emphatically that I don’t fear death. Is it that we fear death, or that we fear the unknown, is it that we fear facing it alone? I don’t know, but I do know that I dread a lingering life that perhaps doesn’t even see death’s approach. And I can imagine living this way in perfect physical health. In any case sleeping when one can becomes really important, naps at other times become important when one is awake in the early morning.

P: I am not dreaming much at all.  In fact B is accusing me of taking all the sleep (something I’ve been guilty of in all our 20 years together).  I wear cotton hats at night and they are big enough to migrate over my eyes as I sleep, and every once in a while I am aware of B peeking under the brim to see if my eyes are open or shut…it’s pretty cute actually.  I don’t like that B cannot get all his rest at night…and I am grateful for my sleep and the absence of unpleasant dreams.  When I wake up, every single day, I experience this body, and I say to myself at least once something like “wow, it’s really me”…or “this is my body from now on.”  Denial works its wormy way in and I get caught in thinking that this may be a very long dream.   I am going to live with this body and the reality that cancer can return for the rest of my days.  It’s something I did not think about at all when I did not have cancer.  It’s different for me than thinking “I could get hit by a bus today”.  I have never said that to myself every day I venture out.  I don’t know if I fear death.  Like B, I don’t like the idea of not being able to take care of myself.  I suspect I’ll talk more about mortality in another entry because I could go on here.   I must say though, that my plan is to LIVE cancer free and not be worrying about the intruder each day.  That will take time.  THAT’s the ball.

We’ve mentioned occasionally throughout this blog that we work as a family to not choose suffering.  This has enhanced my awareness of the love that has always been in our lives, in our home, around us in our community and from afar.  I think this experience has sensitized us at a time in this world where it is so easy to be desensitized.  It has awakened me.  Funny, I never even knew I was asleep. It’s so easy to get caught up in the mundane.

B mentioned in an early entry that the time for cancer diagnosis and treatment is something like gestation.  9 months and we come out the other end.  Not with a baby, but with a body that is rid of a significant amount if not all of the cancer.  The baby is the renewed ability to live in the moment.  At least for me it is.  The delicate blalance for me is keeping my eye on the ball while living in the moment.

Pink Glove Dance

You guys, check it out. This was sent to me by an angel.  It was sent to her with this message: 

Our daughter-in-law created, directed and choreographed this in Portland (OR) last week for her Medline glove division as a fundraiser for breast cancer awareness.  This was all her idea to help promote their new pink gloves.  I don’t know how she got so many employees, doctors and patients to participate, but it started to really catch on and they all had a lot of fun doing it.  When the video gets 1 million hits, Medline will be making a huge contribution to the hospital, as well as offering free mammograms for the community.  Please check it out.  It’s an easy and great way to donate to a wonderful cause, and who hasn’t been touched by breast cancer?

Here’s what’s going on

A little update for you all who are curious about making or reading comments on this blog.  Check out the new page at the top ‘stapled’ between the ABOUT and WALK4HOPE pages.  There is instruction about how to post/read comments.  Thank you so much for asking for this, and know that we love hearing from you.  You’ll all be bloggers yet!

As the dust settles from Monday’s little bomb, we are finding balance.  I am reminded every day that it is endurance I must pray/hope for, NOT certain results from the next test or scan.  We are chasing something we have no control over when we wish for the golden ticket.   I have had so many conversations with friends and loved ones recently for which I am very grateful.  We are being shown so much about our spirit with this experience.  You all are feeling every bump and continue to hold portions of this experience that we just cannot manage ourselves.  Your endurance is astounding.

We have agreed to show up at the hospital at noon Friday for a 1:30 surgery appointment.  They will host me for 23 hours if we feel I need to stay.  We also have the option to come home after recovery.  I have had conversations with my PCP, the oncologist and two with the surgeon over the past two days.  Oncologist answered lots of questions and basically said that her treatment recommendations are based on the national protocol for this stage of cancer, which is somewhere between 2b and 3a. 

I told the surgeon that I did not mean to be a pain with my calls, and her response was “you are the most painless patient I’ve ever had”.  How about that one.  She explained that she did not do a frozen section on the two nodes she took out because of their small size and squishiness.  She explained that the pathologist saw fibrosis in the nodes which apparently is the chemo affect on a cancer cell.  There was a lot of this, and that tells us that the chemo drugs used were effective.  Unfortunately there remained some individual cells in each node, and microscopic or not, they could be the host for another attack on my system if we don’t get them out.  It will be helpful to the oncologist in her planning for the next stage of this treatment to know the extent of the involvement of this bunch of nodes.  Surgeon  explained that the surgery room is booked for 2 hours because of the time it takes she and her assistants to identify and avoid the nerves in that area.  She will extract a triangular bunch of tissue in which the nodes are enveloped.  It’s the pathologist’s job to locate the grapes, as it were, in the tissue.  Surgeon will go into the healing incision to access this area, and will most likely take out the breast drain, so I will only have the arm pit drain to contend with for the next week or two.    PCP had not yet received the information from the pathologist, but she was able to understand my report, and was very supportive of the decision we have made. 

I continue to feel good most of the time.  I worked myself away from the pain meds fairly quickly and stopped the advil yesterday.  I’ve been given permission to work up to 30 hours a week at my discression, home or in the office, and am grateful to be able to do that as I feel up to it.  Obviously recovery from this next procedure will take precident.

9 days post mastectomy I am feeling good about the decision not to get reconstruction right away.  The area where my breast was is very numb.  When I put my hand over it, I am feeling my heart very strongly with no interference from the breast tissue, it’s really an interesting sensation for me.  I do not want anything there right now.  I’ve been wearing B’s flannel shirts a lot since last week, and in addition to feeling like lumberjack woman, I am comforted by knowing his shirt is wrapped around me.  (I’m hooked, what can I say?) I do not think I’m feeling self conscious about the shape of my body, but it’s easy in this cooler weather to camouflage that if it were important to me.  It’s sort of like how I feel about having no hair, wearing hats and doo rags works this time of year and I’m nice and warm.   I have started having what I call  rookie warm flashes.  I was told that I may go into menopause, and I may go out of menopause, and no one really knows how to judge what will happen.  SO I’m just prepared by not wearing stuff I cannot shed quickly. My big sisters who are experienced at having power surges think it’s cute when I whip my hat off and shed layers, and are sharing great bits of wisdom about managing such things.  I have not worked up to being hot enough during one of these for people to warm their hands around me like a camp fire, but I’m working on that. 

At this point I’m getting familiar with the surgery procedure and feel fine about the anesthesia tomorrow.  Again, that idea of closing my eyes one minute and opening them the next in the recovery room fascinates me.  I’m sorry people who will be thinking about me during that period of time cannot join me in lala land.  We know the ponies will be swirling all around us.

I know where the pony is.

Oddly the pathology report hit me almost as hard as the original diagnosis.  Only a little of my energy is spent on wondering why that is.  The rest is focused on getting centered again.

“The Pony” is in the people who have circled around us and are supporting us with love, and food.  “The Pony” is employers who are accommodating both of us and our struggle.   “The Pony” is the visiting Nurses Brigade.  “The Pony” is the Surgeon, one of the States best, who seems to almost be taking this cancer as a personal affront.  “The Pony” is the Oncologist, full of piss and vinegar, who believes there is no room for ego in the exam room.  I am humbled by this all.  I am a very private person, perhaps even shy, and so I would not expect this kind of outpouring.  “The Pony” is lifetime partner who sparkles and lights up the room and draws friends and family and love to her and so vicariously I get to learn about these things.

I have struggled with the surgery, rather quietly, because I didn’t want to be the Eeyore to P’s Winne-the-Pooh.  But, I’m not happy with this disease, at times I’m angry, and it is a struggle to point that anger in the right direction.  The disfigurment that the disease has caused my buddy and lover SUCKS.  The amputation of a breast is important to remove the cancerous cells, the Surgeon is a craftswoman, but it is an amputation all the same and it SUCKS.   Watching chemo kick her ass, SUCKED.  Knowing that she will possibly have a couple of numb toes, perhaps fingers, for the rest of her life  as a side effect of the next round of chemo, SUCKS.  Knowing that we likely won’t escape radiation SUCKS.

I’m willing to eat this shit sandwich and ask for seconds, however, if in the end I get to spend more time with this amazing woman.

There’s got to be a pony in here someplace

Those of you in the substance abuse field or in recovery may know Father Martin.  He was a funny man who educated many about alcoholism.   He told a joke in one of his lectures that went something like this:  A man came upon a room that was filled with manure.  A boy was shoveling and shoveling, and the man asked what he was doing.  They boy said “with all this manure, there’s got to be a pony in here someplace!”  Is that G.O. or what?

We heard from the surgeon today.  Cancer was found in the breast tissue, one spot was 1.5 cm and the other smaller one was .7 cm.  These were much smaller than the original scans/MRI showed, and seem to confirm that the chemo certainly did have an effect.  This was also confirmation for us that mastectomy was the right choice and that feels good to me.  There were also cells found in the nodes, unfortunately.  Apparently the two she took were not the only ones, there were two in the breast tissue as well.  All of them had activity that was more than just residue from chemo.  She said she spoke with the pathologist and with our oncologist at length about this.  The pathologist apparently spent a great deal of time going over all the information available.  Surgeon and oncologist concur that removal of the remaining nodes in my armpit is the best course of action to prevent spread. 

This certainly was not the information any of us wanted to hear.  I said “shit” into the phone, and the surgeon told me I didn’t have to whisper.  I asked if a second opinion could be gotten and she said  the  lab that the hospital contracts with could certainly send the tissue on.  She asked about the drain and how the incision looked and suggested that we go up Thursday for a visit to talk more about this news and to look over the incision and drain.  It occurred to me that this would be just another trip to Bangor, and I asked if there was a reason for not moving forward with surgery.  I didn’t know what else there was to talk about.  She felt that if there was room on Friday in her schedule, that it would be a fine idea if we were up to it.  She could possibly take out the breast drain and put in the arm drain after removal of those nodes.  She was going to check on her schedule and call me back.

I know at the beginning of all this I was not using the word fight and preferred to cradle myself and my body.  Some of that, I think, was preservation of energy.  I am learning that cancer treatment takes endurance like nothing I’ve ever had to muster before.  As I see how far this cancer has gotten into my system and how close it seems to have gotten to spread into other parts of my body, my fight energy is materializing.  I’m not trotting down this trail.  I’m galloping when I have the energy, and right now I am aware of a very strong desire to hear that we have found the boundaries of this cancer.  Am I being too hasty in planning have those remaining nodes removed so soon?

In the mean time  I phoned two lifeline nurses.  Both of them responded with information and support.  They said it if there was some question or borderline information or if it came back negative that getting a second opinion at this juncture to inform the next step would be a good idea.  The information given tonight was not borderline at all.  One suggested that we may want to wait to get all this tissue including the remaining nodes in for a second opinion to determine what the next steps should be from an oncology perspective.  I plan to talk with the oncologist tomorrow if possible to hear her side of things and what this will bring to the table with regard to her  treatment recommendations.  I will ask her about the risks of not getting the nodes removed as well.   I am thinking that I’d rather just get it over with if we are  given information to support that decision.  I’m not great at making decisions.  The bedroom is still white because I cannot decide on the color.  B has always said that we won’t notice it after a while and he’s ok with whatever.  This has proven true with say, light fixtures.  I am relying on his collaboration to a great extent with decisions about my health.  I am so grateful to have his help.

There is so much to think about and we certainly don’t want to be hasty.  We can always cancel the surgery.  It could be as soon as Friday at 1:30.  It may be outpatient surgery since we have experience with drains now.  It all depends upon the time she is done and what we feel is best at the time. Recovery will be different since it will be focused in my armpit, and will likely  be more uncomfortable than what I’m experiencing right now.  Talk about an area of the body that I”ve taken for granted…hmmm.   There are possible long term effects and definite things I will need to know about the affected arm as a result of this surgery.

I certainly will be asking the cancer center to access the port on Thursday  or Friday morning so that we don’t have a repeat performance getting the I.V. going as we did last Tuesday.  I didn’t realize they could access it the day before, so I’m definitely going to look into that tomorrow.

Being a G.O., I’m on a march.  I want to know what I think I need to know and I want to move forward.   It’s so natural to take our eyes off the ball at a time like this.  I voiced feeling disappointed by the news to the surgeon and with my family.  We spoke about it at dinner.  Funny, our children have their eyes on the ball.  They reassured us of that.  They acknowledged awareness that I will be out of commission longer, more time with a drain, more recovery, more family out of balance sort of stuff.  But they both were very clear about where their focus was.  We are finding a balancing point each time we have a challenge.

I hate how preoccupied B has become with this.  He was very affected by the news today, probably more than he anticipated.  I don’t know that it is as much putting too many eggs in one basket, as it is the roller coaster ride that is cancer treatment.   He and I will make the ultimate decision together, of course.   This is a long haul loaded with crossroads.  This horse I’m on is one I’ll be on for the rest of my life.  But I cannot wait to get to the end of this particular trail.   I’m going to keep looking for that pony.  Darn it anyway.