Category: Events

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.

Today I went for a Post Op Camisole fitting…it’s a sexy garment that I get to wear after surgery until the drain comes out.  Talking with others who have been through surgery, the improvements over the years caused a bit of camisole envy I think.  There’s even a pocket for the drain.  The “fitta” was really swell.  With 25 years of experience, I felt in good hands.  It was a 20 minute ordeal, covered by insurance…and I learned that new undergarments, if I need / want them, will be reimbursable as well by insurance.  Well worth the almost 3 hours of travel.  I felt like a big girl.  I actually went to this appointment on my own.

I have the fortune to have wonderful women who are nurses in my support group.  Some of them have lined up for the first 5 or so days post op to pay me a home visit, check me out in my new lingerie, and make sure everything is doing what it is supposed to be doing.  This gives B some professional lenses to look through, and I think he is relieved about this.  That’s so important to me.   They didn’t even blink (well I didn’t see them actually) at my request.

Speaking of B.  This time of year, especially hunting season, is a time of rejuvination for him (my words).  Something happens when he is out in the woods that nourishes him.  He takes a lot of time off from work and goes out just before first light.  He comes home tired, smelly and content…usually with some stories to tell.

I have been excited because it is his time to get away and not be thinking about breast cancer.  SO hunting season started Saturday.  He left the house at 6 AM or so.  At 9:00 he called me to tell me he filled his tag.  I asked why he did it so soon.  He said he had “to focus on breast cancer”.  I said “you better get your arse out in the woods this month or I’ll lock you out of the house”.  What do I do with this guy??

Phase 2:  As chemo ended and talk of surgery begins, I have found myself contacting other women who have been through this.  The 5 I have spoken with thus far have been more than eager to share their stories, and listen to the choices we have made.  I’ve been eager to hear about what they were thinking and feeling during the whole process, and how they feel now about their choices.  When they have said that they think we are making the right choice, I cannot tell you what a relief it has been.  When I talk with these women and they nod their heads, I KNOW they KNOW what I’m trying to say.  This type of support when I’m feeling like I’m in a sea of my own is so grounding for me.  Because of their journey, my journey has been made easier.  They did the clinical trials upon which my providers are drawing to help us make the best decision.  In speaking with one of my nurse friends, she said “if you didn’t make that choice, I would have been bouncing up and down inside and would have figured a way to tell you my concerns…”.

I am having a hard time finding the words to express what it’s like to have people care about me and us so fiercely.

Today I have felt as close to normal as I have in a long time.  I’m still tired after about 3pm.  I am still taking time to rest.  I’m choosing to work from home instead of in the office most of this week, and not working more than 20 hours.  My throat does not hurt any more.  I have patches of dry itchy skin that are eased with skin cream.  THIS I can manage….and we don’t meet with oncology again until the 24th.  If every day I feel better, maybe I’ll have the stamina to hear about the next phase when it’s time.  My eye is on the ball.

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.