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.

11/15/09

Some of you may be happy to hear that I engaged a driver yesterday.  I woke A from a sound slumber around 8:30 (on a Saturday morning, mind you) to take E and I on some errands.  She was very willing, I’m grateful to say, but asked today that we consider waiting to go upstairs until she is awake!  She scored a new winter coat in the deal.  She also had a thrill of a life time when Uncle M came to visit from NY yesterday and let her drive his fancy shmancy BMW black convertible sports car.  All is well in the life of the 15 year old today.

I continue to get visits from our angel nurses, every day.  In fact a friend was over last night who is a student in a nursing program and I gave her a run for her money as we examined the incision and I showed her how the drain works.  I’m finding these nurses among the most willing to talk about body fluids with me!  Those of you who know me well, might know that I love talking about that stuff, so you can imagine what a thrill this is.  You are off the hook for now!

I am sponge bathing because of the drain.  Not as relaxing nor steamy as a hot shower, but I am finding it a time to spend time with my body, which may seem like a statement of the obvious.  It’s so easy to ignore things in the shower, ya know?  So as I take care of my daily needs I feel like I’m growing into this body on many levels.  So far so good.  I almost get too excited, but what is a G.O. to do??  It’s getting to the point that I get so excited to show the nurse-o-the-day the incision, that I’m afraid I’ll be asking anyone who comes through the door to check it out.  Imagine me, an exhibitionist.  So if you come for a visit I’ll do my best to restrain myself.

I went for a walk on the golf course today,  avoiding the biggest hills for now, and feel really good.  My plan is to nap and then do some quiet stuff at home for the rest of the day.  Your energy is felt, your calls, cards, food and visits are appreciated more than you can possibly know.

11/13/09

It was nice to be home with B today.  We took a nap, had lunch with a friend, and chilled for most of the day.  I did some work from home.   I made the mistake of going to pick up the kids from school and doing a couple small errands.  While I loved doing something normal and giving B time to himself, I had no business being on the road.  My range of motion is not good enough for driving, nor is my ability to drive a standard transmission with one arm in partial functioning mode.  With A driving on a permit, she is observing everything about our driving, and I was not setting a good example for her.  It WAS good to get out, but even better to get home.  I’ll let others drive for a while, no problem.  I also felt very vulnerable without a big pillow draped over me.  Just the idea of stopping short or something made me twinge.  Alas.

The stampede continues.  The food is coming in as though we were having a drive for hunger.  Those of  you from afar can rest assured, that we are WELL taken care of here.  Wanna come to Maine for dinner sometime SOON??  The love has flooded our lives and we are buoyant in the sea of support.  Another angel friend nurse visit today, and the incision looks beautiful.  It is draining less than yesterday which is good.  The surgeon called tonight with no pathology report.  She told me that they are being extra attentive to the chemo affects on the cells and reported that the huge effect seen on the MRI is being confirmed.  They want to be very thorough and we are ok with this.  We will learn about it either Monday or Tuesday.  Angel nurse recommended that we find out if they sent this out for analysis or not.  If not, we should request a second opinion.  I assumed from what the surgeon said that they were sending it out to an independent lab, but I did not ask specifically.  Together we can do what we cannot do alone.  Thanks S for that advice.

There are times when I STILL think that this is surreal.  Is this really happening?  I never imagined being the one going through this.  How could I or anyone else?  These thoughts are not sad at this point, but observations at a point in time.  I feel so connected today, and so when I remember to empty the drain, or when I look down at my new body, I am reminded that life goes on, and I can feel ok in spite of what we’ve been through.  My energy is ok.  I tire at the end of the day, imagine that.  I am laughing, and cracking jokes in very poor taste with some.  I am feeling like the glass is neither half full nor half empty.  It’s actually very full.  Please understand that I don’t like this.  I still don’t like not having hair and having a cold neck.  I don’t like the fact that my left breast is now smooshed on a bunch of slides in a lab.  I don’t like the idea of waiting with baited breath after every scan from now on.  I do like the idea of putting most of this behind us.  What I will keep in the fore is the community that has come to life before my very eyes.  The expressions of love and affection.  The random acts of kindness.  The living in the moment.  What more do any of us have?

The Stampede of the G.O.’s

Holy moly.

As I was going under on Tuesday in the operating room, I felt the stampede.  It was still going yesterday (Wed) as we returned home, and long into the night…in fact I think it’s still happening.  Thanks so much, all of you, for carrying me/us.  Whether it was in the form of a thought, prayer, energy, light, a candle,  a comment, an email, a card,  a visit, some nourishment, reassurance, concern, or just pure G.O. energy, thank you.

Tuesday started out with a bit of a bump as they tried to access the port for the IV.  I don’t want to go into too much detail, but after 3 attempts at the port and 2 attempts in my arm and my hand, we went up to nuclear medicine without an IV.  I felt a twinge of sympathy for the nurse who was the primary.  I’m sure she felt bad about it all.  Anyway, they did not need the IV in nuclear medicine, so it was ok.  I know both B and I were holding back on thinking that this was not a good way to start the day.  G.O.’s don’t think that way.

ANYWAY, the first proceedure to take place was to shoot small amounts of a  substance around the biopsy site.  As I was getting these shots B was on the cell calling the Cancer Center where I received chemo to ask them what size needles they used to access my port.  The first 3 injections stung a bit, the last one a lot more, but we got through it.  I was glad B was otherwise occupied on the phone, I’m sure it would not have been a joy to witness.  Basically the substance would show the path of drainage for this tumor and would lead the surgeon to the sentinel node.  This node is the gateway into the lymphatic system under my arm.  I had to massage the area and then they had me lie on my side and back in 3 different positions.  They took two 5 minute pictures and one 2 minute picture.  In the middle of the 2nd picture, I heard the tech say something like “there’s that node”.  This was wonderful to hear as they warned us that it could take 45 minutes or longer, or they might not even find it, which they said wouldn’t be a bad sign.  The camera they use is a flat screen that comes down over me on a table similar to a CT set up.  I sort of imagined that I was the batter and it was the waffle iron.  Fortunately I didn’t get squished or eaten.

Then we went to preop again, and a different nurse came and accessed a vein on her first try.  I was told I had to lose my favorite flannel life-is-good snowman pants, which was very disappointing.  Then I was swooped away to the OR.  B was sent to sit vigil for eternity in the waiting room that had no plugs for the laptop with a tired battery.  I have no idea how he managed during that time.

I barely remember hearing people and asking to see B once I was in recovery.  I clearly remember it taking a looooooooooooooooooooong time for me to focus and get the cotton out of my mouth.  Having B there was just what I needed.  I had an ace bandage with a lot of padding wrapped around my chest.  It felt very secure and comforting to me.  The drain was pinned to my johnny.

The room I was given in the hospital was on the river side and I had the bed by the window.  It was perfect as far as hospital beds go.  I asked to leave the curtains open so I could see the sunrise, and not only did I have that, but someone was in a kayak coming down the middle of the river as the dawn broke.  I imagined it was me and I had a delightful ride.  The night was not too bad.  B left just as friend D arrived, and her company totally made up for the unidentifiable object on my dinner plate that was masquerading as a veggie burger.  Fortunately the broth in the vegetable soup was tastey, and I had apple sauce to keep me quiet.  I really was not that hungry.  I slept shallowly but well I think, and the care was excellent during my stay.  I was warned that I’d pee green from the nuclear substance and the blue dye that was used during surgery…it was actually a very deep blue green.  Kinda neat as far as colored pee goes.  I was happy to see it coming out of my body.

The surgeon showed up early in the morning.  I was so happy to see her.  The day before surgery she called me to go over questions and all, and as we hung up she said “I’ll take care of you, I promise.”  That was a jewel that I carried with me into this phase, along with all of you.  SO she immediately wanted to check out the incision.  I sat up and before I knew it she had unwrapped me and was checking things out.  I decided to just go with the energy, and my first glance at the site where a breast used to be was not as devastating as I thought it might be.  I think I have been processing this since the first mention of mastectomy in July, and I’m sure I’ll be processing it for a long time.  I am feeling some relief today.

The surgeon told me that she felt very good about what she saw/didn’t see.  She took 2 nodes out for analysis, the sentinel node and the next one.  She said they were small and squishy which is what she hoped to find.  If there were obvious hard places in the nodes, it might mean that the tumor was growing in there.  There may be ‘trace’ cells of the cancer that the chemo evicted, but that would be expected.  SO those nodes are on their slimy way way to the lab for microscopic analysis.  We should hear that news either Friday or Monday.  (The mid week holiday may have slowed things down).   If there is positive activity, then she will likely have to go in and take more out.  If not, that would be the end of being cut open as far as I can tell.  I feel very hopeful.  This surgeon is wonderful.  She sat with me for long enough, answered every question I had, offered more info and gave me a hug before she left.  I will see her next when we go in to get the drain removed, probably early next week.

The hospital offers a free Reiki service, so I called for it and someone came up just before we left.  It was so good to leave.  I slept the whole ride home.

S is a friend, has a lot of experience as a breast care nurse, and is my daughter’s friend’s mom.   Her experience has been so valuable to us.  Basically everything she said about mastectomy has been my experience:

1. doctors and nurses love to look at incisions.  You HAVE to tell them if you   are not ready to look  yourself.    2. you are going to feel better than you expect to.   3. the drain will do its job if you do your job (like don’t pull it out or render it useless by not ‘priming’ it after emptying it)

She came to see me/us yesterday just after I woke from my nap.  It was reassuring to hear her complement the incision and to get her assessment of things.  She even brought me a better chart than the hospital gave me to record the drainage.  What a blessing.  While she was visiting two friends stopped in and of course we hugged.  S made no bones about me hugging all these people the day after surgery, and told me she would not hug me for at least 2 more days.

Another nurse friend came by later and said with the most sincere and loving look “I’m so glad it’s gone”, as she looked over the beautiful work of our surgeon.  When I went to bed, I made sure extra pillows were over my incision incase the rhino-katz decided to pounce.  I slept very soundly.

I am truly amazed that I feel so good today.  The pain is more of a muscle ache than anything and is not constant.  I have occasional twinges along the incision line, but not much.  It is easy to just stoop over away from a stretch, but it feels much better to bring my shoulder back and extend my arm to the side just a bit.  I am being careful.  The doc wanted me to do an exercise where I walk my arm up the wall with my fingers as far as I can without straining.  There will be more once the drain comes out and this will be important because as the incision heals it will want to pull everything tight and I don’t want that.

I have some appetite.  I made myself lie down before my ride to acupuncture.  Another nurse visit and peek at the incision which looked healthy.  My spirits are good.  B has been amazing through this.  A and E are mostly focused on their lives, and I want it that way, most of the time.  This has to be weird for them.  Our angels are swarming and the endurance is amazing.  I’ll keep giving updates as I can.  So far so good.