War of my life

I was walking by myself the other morning listening to music.  The song below came on and resonated, hence today’s thoughts.  (Not the best video, but I like what he says at the beginning and how intimate the venue was for the performance.)

I just went to the mail box and there was one letter in it.  It was from my PCP, the form letter that starts with “I’m pleased to inform you…”  Pap was negative.  And so we are off to a good start on the observation of endometrial tissue.   I was trying to come up with a good analogy here, and reconnaissance came to mind (thanks to B‘s infinite supply of words).  Reconnaissance is a mission to obtain information by visual observation or other detection methods, about the activities and resources of an enemy or potential enemy. The song is called War of My Life.

I would imagine it is interesting hearing a G.O. say that she feels like she is in the war of her life.  I’ve been asked by several people over the past few weeks what’s changed for me because of all of this (diagnosis of and treatment for breast cancer).  I’ve noticed that I spend a lot of time just blank, probably looking like I’m formulating some profound answer.  Nothing very profound comes out in my opinion.  I am still going through life fairly happy.  Whenever I do something that is not in the ‘how to prevent cancer’ literature, I pause and sometimes feel like a weak mortal who can’t even save her own life.  Whenever I do something that IS in the ‘how to preven cancer’ literature, I wonder if I can get extra credit if I do a little more.  You know, if you eat a big mac with a diet soda, can’ t the diet soda cancel out the fat in the big mac?  If you say no to ice cream cake at the office, can’t your body “roll back” that many calories for the day??

I do feel like there’s been an intrusion.  The cellular integrity within my system has been breached.  A  foreign army has come to the rescue to kill the damn soldiers that brought dis-ease to the bod.  Now I’m trying to evict the foreign army because IT doesn’t belong in here either.

What is left?  What residue from the chemistry?  What will my body do with the radiation?  What will the radiation do to my body?  Are there any enemy cells hiding out somewhere?  Am I the same person I was?

Well the only question I can answer from that bunch is the last one, with a resounding YES AND NO.  Many have said that cancer has a way of coralling the spirit that was already present.  I’m still me.  I know the glass is half full.  I don’t give up easy.  I suspect having crossed the cancer barrier I am different.  The cancer didn’t hurt and through the point of diagnosis I was not feeling sick from it.  The treatment we chose for this was harsh and made me sick.  That was a battle I and we chose to fight.

Before this I was doing things fairly intentionally, but did get carried away when a shiny object sparkled in the distance.  Now I am doing things fairly intentionally and really enjoying the sparkly diversions.  Someone I have not spoken to in a long time called today and APOLOGIZED for not knowing what I was going through.  She and I made a date for lunch and she asked if my full time job could allow such a thing.  My response was that it will allow for such a thing because I’m not going to miss out on shiny opportunities.    I remain grateful for the job I have which can afford such an arrogant posture.  Really.

I do feel like my body is now on hyperalert for UFOs.     I’ve got the Angel Brigade and there is a new addition to the parade of ghosts that marches in my wake.  For me the ghosts have to do with the compromises I and we’ve made in order to evict the cancer.  The ghosts know how sick I got from AC.  They know what people who love me had to witness.  They remember what it was like to get a breast amputated and to hear that nodes were positive.    The ghosts know how hard it was to confront hair loss and live without it for over 6 months.

I’ve said it before.  It is what it is.  I’ve got no choice but to fight and I’m not going to roll over and play dead.  The Angel Brigade (that includes any readers of this blog) was and is my army.  I am permanently enlisted in your army as well if you’ll have me.  We all have something to fight for.  Here is a quote from a magnet that my kat loving friend D sent me during the battle:

I do not think we know our own strength

until we have seen how strong love makes us.

Come out angels, come out ghosts
Come out darkness, bring everyone you know
I’m not running and I’m not scared
I am waiting and well-prepared

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run

I’ve got a hammer and a heart of glass
I gotta know right now which walls to smash
I got a pocket, got no pills
If fear hasn’t killed me yet, then nothing will

All the suffering and all the pain
Never left a name

I’m in the war of my life, at the door of my life
Out of time and there’s nowhere to run
I’m in the war of my life, at the core of my life
Got no choice but to fight ’til it’s done

No more suffering, no more pain
Never again

I’m in the war of my life, at the door of my life
Out of time and there’s no where to run

So fight on, fight on everyone

So fight on, got no choice but to fight ’til it’s done
So fight on, fight on everyone
Got no choice, got no choice but to fight ’til it’s done
Fight on everyone
So  fight on

No news IS good news

Before I knew it, it was almost 2 weeks since the last entry. I saw a dear, fellow snow-loving friend at work who said that she checks the blog every Tuesday and Thursday and was so excited that there were no entries because it must mean all is well.  (There’s a G.O. if I ever met one.)  Indeed.  Thank you all who are still faithfully checking. My plan is to keep this blog going at least through my meeting with the surgeon at which time we will review the mammogram I am to have this month. I have had more thoughts and believe this is still the forum for them.

Well a quick update is in order.  I had follow ups with both oncology and radiation oncology last week AND my annual PCP visit.   Bone density is NORMAL.  Liver funcitons are NORMAL.  Blood counts are NORMAL.  I have not heard about my Pap results, but they said I’d get a call if there was a problem and a letter if there was not, and I have not had a call…yet.  Oncology wants to order a CT scan of my torso and pelvis before my next follow up in 3 months,  just to monitor activity on my liver where something showed up in the early CT.  The follow up PET showed nothing.   

When I spoke with the radiation oncology PA, I learned that the radiated skin now has something I will call cellular memory.  If I go out in the sun without SPF 50,000 on 🙂 the pink rectangle of radiated skin will emerge, even if that particular part of my anatomy is not directly exposed. When she spoke about the next radiation oncology follow up, I asked how many different providers I would need to continue to see. Who’s the boss, sort of. I asked the same question to Dr. Oncology. It seems to me that this is another issue that does not necessarily have one path to follow. Basically here’s what I’m taking from this: having 3 or 4 eyes and hands on the issue (or the TISSUE to be exact), is not a bad thing. I can spread out the visits so if I have them every quarter, a different provider is providing input. Not a bad thing, but it opens me up for confusion and differing points of view.   I NEED A GURU!   Ok, maybe not, but I do have to think about what I want to do with all of this. For the next 6 months, I’m just going to follow the path. Surgeon in July, Oncologist in September, Radiation Oncologist in December. All info will go to my PCP.

5 weeks into Tamoxifen, I’m feeling mostly well.  I have a really annoying rash that is not going away along the radiated skin and on my lower left ribs and up my neck.  At the follow ups we thought it might be just the pathway out of radiation, but I’m reading that it can also be a reaction to tamoxifen.  Because it’s so localized, I’m not so sure it’s from Tamoxifen, but if it’s still driving me batty on Monday, I’ll give Dr. Oncologist a call.  I was offered steroids for it, but you know me, GEEZ.  I’d rather have needles stuck in me…in fact I have an acupuncture appointment this week.  For now silvadene at night and cortaid during the day seem to work fine.

On the subject of the PORT-A-CATH.  I left the oncology follow up without remembering to ask, so I called and left a message, simply wondering what is to become of the thing that has been so incredibly helpful through all of this.  The perdiem nurse who was in that day called back and said ‘if you want it out, Dr. Oncology said it would be fine to get it out now.’  Since then, I’ve thought about it with the 3 month CT scan in the future and wondered if I should at least wait until that point.   Two days later I received a call from Dr. Oncology’s regular nurse who said that some people leave them in for years and years.  She recommended waiting at least one year before considering removal.  I assured her that it is not causing me problems.  Going to have it flushed (every 4-6 weeks) is not a problem either, just remembering to schedule it might be challenging, not impossible.  The thing that is most on my mind is that it is and has always been a bit troubling to A and E.  Neither of them have liked the bump in my skin from the day it was put in.  A reminder of the need for pretty serious medical intervention.   This will be something I talk about both with Dr. Surgeon and Dr. Oncology, inviting myself into the known potential conundrum.  I’ll keep you posted on that.  For now, the port-a-cath will just continue as part of my anatomy.

I am still showered with complements on my hair.  This is from people who know me and are fierce cheerleaders AND from people I’ve never seen before.  A cannot stop herself from just constantly running her fingers through it.  She thinks it feels really cool, which it does, I have to admit, from the inside AND on the outside.  But after one of her indulgent head massages, I feel like I should look like the guy on Eraserhead.  IF you have not seen that movie, DON’T bother.  You can just imagine what the main character looked like with a name like Eraserhead.  The hair growth itself continues to thrill me to no end, and it is really amazing hair. Dense, thick, curly, all different colors.  Because of whatever is happening with my estrogen, I’m kind of fuzzy on my jaw bones too, which is just another thing to marvel at in the marvelous petri dish that is my life.   I’m not the bearded lady, mind you, but it’s there.

Art work?  Not much.  I am active.  I’m walking, gardening and doing stuff outside.  Taking time for art is just not what my body wants or needs at the moment.  Our garden looks beautiful thanks to the perfect conditions we are experiencing this spring.  In fact if I don’t pick some of the lettuce today, we might miss out on some delectable leafy greens.   

I have a mammogram on the 22nd.  I will write between now and then, I promise.  B is wondering if we should start a new blog for the purpose of keeping in touch with those of you who have been so faithful on this site.  Neither of us are interested in social networking in the big picture.  I’m not so sure how I feel about it.  Email works for me.  This whole experience of sharing my/our thoughts has done more than serve the purpose for which we created it, and I’m really happy about that.  Obviously I have no idea where it will go from here.  Comments about that would be really helpful.

Two entries in as many days.  Wow, I better not strain myself!

For the love of Nancy

You may recall that I had been visiting my 84 year old friend during all of this.  Well, Nancy’s life ended last night and it was on her terms.  If we all could be as ready as she was and have our wishes known and followed as hers were, I, for one, would be very grateful.   

I visited Nancy after shaving my head.  We were having tea and she looked at me after a steaming sip and reached out to touch my head.  “You have a perfect skull, you know, not everyone could pull this off.”  Some days when I came to visit she was still in bed, and one time in particular I leaned over her and said “Good morning Nancy!” and after she opened her eyes and realized who had the nerve to interrupt her slumber, she smiled as I took off my hat.  She raised her hands to rub the stubble, eyes closed, and said “my friend with the perfect skull”.   

Our visits were not particularly long nor were they as numerous as I would have liked them to be, but they certainly were intentional.  Every gesture and word was intentional.  Nancy sometimes struggled to get her brilliant thoughts from her brain to her mouth and sometimes it just took time to accomplish the task.  There was no haste to make waste.  I found myself listening intently almost so hard that I got caught up in the visual of her mouth trying to form the words and would miss the point.  She was very forgiving anyway, so when I said something in return that was totally out of the ball park, she moved right along with me.  Bless her heart.  She was incredibly thoughtful and supportive of my ups and downs during my own treatments, and certainly saw me at vulnerable moments.

Nancy lived with her daughter, my dear friend S, since well before I was diagnosed last summer.  I had been granted cart blanche with regard to visits.  This was such a gift to me.  S was very generous in sharing her mom.  In addition to what I’ve already shared, there are three specific memories from those visits that I want to write about.  I had the priviledge of not only visiting, but taking care of Nancy for a couple hours one day.  We took care of her needs, had our tea and conversation, and decided to get outside.  It was a beautiful day.  We wheeled her chair out the long dirt driveway and one of the cats jumped right up on Nancy’s lap, muddy paws and all.  She loved it.  When we got back to the house, she said that she needed exercise, so we took the walker out and made a lap around a small area in the driveway.  At this point in Nancy’s life, walking was a chore as she could only really move her feet maybe 4 inches with each deliberate step.  She made fun of herself as she walked along because she had to concentrate so hard that she lost track of the position of her body, and would find herself bent at a 90 degree angle before too long.  Well, we were walking up the ramp, Nancy was at about  a 98 degree angle and stopped for a very long pause.  She finally said “what on earth is that?”   I got on my hands and knees, trying to judge the path of her sight to find whatever it was that caught her eye.  I could not believe it when I saw it.  In the crack of the deck board, there was a tail of a mouse, something one of the cats apparently had left as a gift.  We laughed and Nancy said “OK, now, look at me.  I have completely forgotten how to straighten up.”

On another occasion, I dropped by unannounced.  Nancy was sitting in front of her beautiful old wooden blanket chest and was polishing it.   S was guiding her hand along and they were talking and laughing.  I loved seeing this because it epitomized their relationship from my perspective.  S was a fierce advocate for her mom, and seemed to provide as many opportunities for her as were possible, even something that seems so simple like polishing a cherished piece of furniture.  That visit Nancy was working to say something as we had tea.  She was pointing to her neck and finally grabbed a gold necklace that she had on.  She communicated to S  that she wanted S‘s older sister to have that particular necklace.  S always took note of these things, and reassured Nancy that she would be sure that her sister got the necklace.

On one of my last visits to the house, Nancy was sitting in her recliner by the window.  When I pulled a chair up snuggly close and leaned over to give her a big smooch on the cheek, she said “you know you are ‘myfriendpatty’, it’s all one word and I want to be sure you know that”. 

Last Sunday, S and I visited Nancy at a nursing home she was admitted to about 4 days earlier.  She was sleeping when we arrived and when I greeted her I said “hey Nancy, it’s yourfriendpatty”.  We had a great visit.  We got her ready for the day and had breakfast.  Working with S to get her ready was amazing.  She knows her mom so well.  She put the T in TLC. Nancy was contemplating reality and asked on several occasions if something that just happened in her mind was our experience as well.  I knew from conversations with S that Nancy was ready to exit the body that was just not working any more.  She’s been ready for quite some time, actually.  Sitting here today, I feel very fortunate to have had that particular visit with her, only 6 days ago.

The next day S called me and told me Nancy was on her way to a Hospice house.  Something had happened, and Nancy was able to give full consent for NO medical intervention.  S said she was very clear with the doc that she knew that it would lead to her death. 

I visited Nancy the next day at a beautiful Hospice house where the doors are wide enough to wheel hospital beds out into the gardens.  Nancy was in bed, fairly sedated.  When I bent over and gave her a smooch and told her that herfriendpatty was here for a visit, she opened her eyes and her breathing haulted for a moment, it seemed that she recognized that it was me.  S‘s family was very kind and welcoming, even in their private grief, to make room for so many who were able to come to say goodbye.  While I was there S took Nancy’s necklace out of her pocket and gave it to her sister, just like she’d promised.

The last time I saw Nancy, she was resting fairly peacefully.  A friend was playing the harp for her.  I held her very warm hand, stroked her hair and told her a few things I wanted her to know.  Less than 24 hours later, S communicated that Nancy was finally able to make it out of the body that could no longer house her vital spirit, with her grandson reading poetry (Yeats) to her as she left.  S  just emailed the end of the poem:

For he comes, the human child,
To the waters and the wild
With a faery, hand in hand,
From a world more full of weeping than he can understand.

Memorial Day

A long weekend.   A long afternoon in my garden.  A quick visit from M, my life long friend.  We ate wonderful food at the Post Office Cafe and sat by the fire pit at twilight.  After she left, I attended a Memorial Day celebration at our old town hall and local cemetary.  I stood there listening to the bagpipes, the boy and girl scouts reading the names of our town’s fallen soldiers.  I remembered the eulogy that we wrote for Pop and started thinking about the things we share after someone goes out.  I think of Mom, all that she is to all of us, and just can’t seem to believe that she totally gets how much she has given us.  I thought about how important it is to me to tell people, somehow, that they enhance my life.  I thought about how I would like to be remembered.  Then I thought that was presumptuous. 

M and I were at the greenhouse yesterday.  Something really funny happened and we laughed so hard we could hardly control our bladders.  You know how that happens.  You laugh until you can’t breathe, your eyes tear and every time you think of what happens, regardless of where you are, the fit starts again.  Every time we tried to tell the story we just started cracking up.  My eyes are tearing just writing about it.  It’s sort of like trying to tell a dream that you might have thought was really funny.  B tells me I laugh in my sleep, and never seems to get it when I try to explain what was going on in dreamland.  M and I tried to tell the story when we got home, but the audience shook his head and looked at us like we had too much iced tea or something. (It wasn’t even Long Island iced tea that we were drinking…)  My point here is that remembering time with M, even though it was just a blink of time, fulls me with whatever laughter and love are made of.  

At the ceremony today I had the good fortune to see many people whose families have grown up with ours.  People touched my hair, commented on the texture and color, asked where the scarves had gone.  The treatment journey all complete and life on life’s terms, back into normal.  When I spoke with brother M today he said “considering everything, normal is excellent”. 

The radiated area is much cooler now.  No more breaking down skin.  A little rashy, but nothing like it was.  I have some appointments this week: a bone scan tomorrow to get a baseline to monitor as I continue to take Tamoxifen.  My annual exam Thursday, again baseline for monitoring endometrial tissue changes if there are any.  Mamogram later in the month.  I notice that I blog less and less about breast cancer and more and more about life now.  I notice that conversations now are about life as well.  It’s really nice to be back.

My friend was recently diagnosed with breast cancer, both breasts, double mastectomy is scheduled for tomorrow.  When I found out I called her immediately and insisted that she put my cell phone number where she could find it whenever she needed anything.  I visited her and brought her a few things that were shared with me, but most of all I brought my experience.  This is not a baton I want to pass to anyone.  You have all taught me how to support someone going through this.  That is the baton that I will take from you as I run next to my friend B.

Alive

It has been such a terrific weekend.  I don’t think the weather could have been more perfect for B and E camping or for the prom that A attended with her friend.  (She looked beautiful and had a great time, by the way.  We have a funny story about hair that one of us will write about soon.)  I had the place to myself last night until A came home, and decided to watch a movie that was sitting on our computer.  It was a fun movie.  It wasn’t about the matriarch’s breast cancer, but at the very end she informed her kids that this time it was it, and it was apparent in the last scene that she’d died.  My first thought was to protect my kids from this.  My second thought was not to. 

The  reality that the cancer could come back (or perhaps not have left completely) is something that comes to me from time to time.  But a true G.O. doesn’t hold on to this for long.  When I see people I have not seen in a while they ask if the cancer is gone.  My answer is simple.  My surgeon said it was gone when she visited me the day after surgery.  My oncologist suggested it was gone as well.  When I think about the fact that a rogue cell could be hiding in my tissue it lasts for a second or two, and then I think that I never wondered when the bus would hit me before all this began.  When I get asked ‘what’s the prognosis?’ I just have to tell it like it is.  I don’t really know, but I do know a lot of people go on to live long lives and some die too early.  We don’t spend much time talking about this at home.  I think I can speak for all when I say that we are just happy to get back in gear together.  At this point I am encountering people who never knew that I had cancer, and they are none the wiser.  This to me is a good sign that I’m moving beyond it all to the degree that I can.

After a weekend like this (minus the hot flashes), I could almost convince myself that the past 9 months didn’t exist.  Really.  I feel very good.  My scar is healing very nicely.  My range of motion is almost back to normal.  When I got out of the shower E was happy to comb my hair, like he did before I shaved my head.  He even messed around parting it in different places.  I was in the garden today, harvesting lettuce and spinach, planting some perennials, watering the cabbage and broccoli.  I primed the floor boards for the bathroom.  See?  It’s life with spring breezes, projects, katz finding sun spots beneath the sky lights.

Since this blog is about ‘a family’s life with breast cancer’, I will keep you informed.  My next appointment is in a couple weeks.  The tamoxifen update is thus:  I don’t feel any different.  I’m active, I’m eating well and sleeping well.   I did have a couple people ask about the detox.  It was a week long, and was based around a cabbage soup.   You eat a combination of the soup with veggies, fruit, bananas, skim milk and protein on different days.   I don’t know if it has anything to do with my overall feeling of well being, but I felt good following the recommendations through to the end.  I’m not going to publish it though.  I think that if people are interested in doing a detox, they ought to have someone advise them.  I really trust my herbalist and she was my guide.  When we agreed to follow the recommendations from the medical model, we also agreed to balance it with other advice.  This particular advice came from someone I trust, in whose hands I feel very supported.

Sitting here on my deck, with the late afternoon shadows in the forest that surrounds our house, glints of sunlight on the spring green leaves, with the birds and tree frogs chirping away, I am awake to the fact that I like being alive right now.  I am going to do what I can so that it lasts a good long time.

Life after radiation

So here I am walking around in my life, doing what I consider to be absolutely normal things.  (Success in the prom dress catagory, by the way.) Minding my own business…oh and that of my children, and maybe B too.  Since I’m at work most of the day many days of the week, I am around people who have known me for a really long time.  Virtually everywhere I go, I am greeted by people who are just smiling from ear to ear at me.  I have NEVER had so many complements on my hair.  Now, truly, ANY hair is better than NO hair for me, so I can understand all the fuss.  My head is finaly not cold (most of the time) and hair this long (or short depending on your perspective) is unbelievably easy to care for.  I started putting conditioner on it this week and the curls may be small, but they are more defined.  It’s actually a really fun length.  I just love reaching up and messing around with it now.  All I’ve felt for months and months is stubble, so this feels quite luxurious.

I went to the Survivorship clinic at the cancer center this week.  I was expecting just to talk with someone about volunteer opportunities, and ended up having an appointment with a nurse who said the clinic was a new thing.  They are trying to help survivors manage all the follow up appointments, diet, exercise and stuff.  It was ok to talk to someone about this, but I really feel (and so did she) like I have all of that in order right now.  I did come out of it with a bone scan appointment.  They just want to be sure no osteopenia or osteoperosis exists as I head further and further into a chemical induced menopause.   She did ask if I wanted a blood test to see what my hormone levels are.  Something about seeing if I’m in a true menopause.  I asked what we would do with this information and she said it was just for knowledge.  I declined.  It sort of reminded me of our decision not to do any prenatal testing or sonograms.  If the results were not going to affect my actions, why do an unnecessary test? (even if it is just a blood test) I’ve set up a pap next month to get a baseline before the Tamoxifen is too established in my system.  They want to monitor my endometiral tissue right from the start.  I have a mammo in late June and a follow up with my surgeon (who will be following my mammos from now on) in July.  Follow up oncology and radiation oncology appointments too, in June.  I guess there is something to say about not going in every day, but again, GEEZ.  So many appointments.  I said earlier in this blog that I wanted to be sure to keep up with monitoring.  So here I go.

During one of my last visits to the center, a young woman in silent tears was pushing a wheel chair.  The elder woman in the chair had a blue hat on and she was crying too.  She looked exhausted.  Someone once told me that it would be important to not focus too much on what/who I saw at the center.  We have overheard conversations of people with a terminal diagnosis saying they are just going to live fully.  We have seen people whose skin was gray, who looked like they had nothing else to give.  We have seen people who are too young, and elders who have lived long lives.  The woman in the wheelchair and her caring young woman escort were sharing something together that is sacred in my opinion.  Whatever it was, it just touched my heart.

This may sound ridiculous, but when I think about cancer, I don’t associate it with myself.  With all that this body has been through, I’m amazed that I feel this way.  The battleground that is my body doesn’t feel like it’s war torn. I mean there is obvious deformity, but I guess the way I think about it is that the cancer is missing now.  The effects of radiation are fading slowly, still some tenderness, but definitely cooling off.  I am shocked at my energy level.  Now mind you, I’m sleepy usually around 8:30 or 9, but that’s not too much different from my norm.  This week especially, I’ve been on a nutritional detox, and I am really surprised at how energized I feel.  I know detoxing is supposed to make me feel good.  But I’m still intrigued.  My body is recovering.  I’m getting more exercise.   I feel pretty healthy for someone who apparently had cancer.  This whole paragraph is so G.O., isn’t it?

So here are the pictures of my scar, for anyone who wants to see.  In the 3rd and 4th pics you can clearly see the effects of the breast booster radiation along the scar.  I feel somewhat like an exhibitionist, but here they are.

Radiation day #1:

Radiation-day-1-150x150

Radiation day #33:

Radiation-Day-33-150x150

9 days post radiation:

9-days-Post-radiation--150x150

12 days post radiation:

12-days-post-radiation-150x150

I’m no longer putting my hand tenderly under my arm to ease the burning pain.  I’m using less silvadene.  I’m grateful that the soreness is fading.  I’m on the last day of my detox, and really, I feel quite good.  Thanks for keeping up with me.

Tamox and Detox

Well, almost a week on Tamoxifen and I’m doing well.  I really have not noticed any side effects yet.  I have a long way to go in that department, but so far, so good.  What more could I ask?  As far as my skin goes, if you picture a rectangular patch from sternum to side ribs, clavicle to just below where a breast used to be, much of the redness is fading and the sloughing skin is smoothing out.  There is about a 3 inch patch over the scar that is pretty hot and breaking down.  The most sensitive areas are at the ends of the scar.  I have to be careful when I dry off from a shower not to rub that area.  The skin could just fall right off and that causes really raw areas.  Dead skin is not pleasant to look at, but at least I can see that some healing is going on beneath it.  Don’t know if there are any morbidly curious people out there, but I will publish some scar pics from before, during and after radiation.  Probably once I see that the scar is in healing mode rather than breaking down mode.  I’m totally morbidly curious.  I love to talk about body fluids and would be very curious myself.

I visited my herbalist last week and she gives acupuncture some of the credit for my not experiencing neuropathy with all the chemotherapy I had.  I give acupuncture credit for a lot.  I still do not believe that I have any signs of neuropathy.  I’m so grateful for this.  She also gave me a menu to cleanse my liver.  I want to do this to mark the end of chemicals and treatments (other than Tamoxifen, of course.).  A has decided she would do it with me.  It’s so nice to have a partner in this.  We are on day 3 of 7 today.  All is going well.  My acupuncturist treated me this week, using points related to my breast area.  I am still intrigued by acupuncture.  I strongly recommend it (not just for breast cancer treatment, by the way).

I’m back to work full time with the exception of the few interspersed appointments that I have.  It feels good to feel good.  I’m not as fatigued this week as I thought I’d be.  D and I have made it out for our golf course walks 3 times this week.  In fact we are due in 5 minutes to go this morning so I’d best be off.  I pick up E from a friend’s house after that, and then head out prom dress shopping with A in our favorite local city.  Life is normal.  That is good.

Odds and Ends

Today was our first follow up with Dr. Oncologist.  I am a candidate for Tomaxifen because of the type of cancer and that I can metabolize this particular drug.  I am also a candidate because I am not prone to blood clots, I don’t smoke, I don’t take birth control.  In addition to blood clots some other side effects include endometiral cancer (prevents one cancer and can cause another).  Weight gain is also a side effect which thrills me to no end.  Tomaxifen should start within 30 days of radiation ending.  Some choose to regain some strength, others start right away.  Tomaxifen is recommended for me because I’m considered premenopausal even though chemo put me into a menopause-like state.  It will keep my ovaries in check.  It could happen that once the 5 years is up, I might return to having periods again and go through ‘natural’ menopause at some other time.   We were told today that if I only did surgery that there would be a 50% chance that I would remain disease free.  Since we did chemo – surgery – chemo – radiation, there is an 80% chance that I will remain disease free.  Well, actually she said a 20 % chance that it would reoccur.  B and I both like to look at the 80% better than the 20%.    She said people who are active do better in all regards most of the time. 

The plan is

  • Start the Tomaxifen this week and take for 5 years.
  • Meet with Dr. Oncologist in one month (or sooner if I feel lousy).  We can stop the med and wait a couple weeks if needed.  We can also stop it all together and choose another drug if needed. Lab work at this visit to monitor liver functions and other things.
  • Meet with Dr. Radiation Oncologist in a month.
  • Have yearly paps to monitor for abnormal endometrial tissue.
  • Have a mamogram every 6 months.
  • Have a breast and chest wall exam every 6 months.
  • The first scan will be at 6 months to check on my liver, since there was initial observation of something there which was not thought to be cancer.  She said that a lot of people at this stage ask why they are not getting more scans to see if there is any cancer.  Here was her response:  “We are not going to go looking for this.  We do not want to expose you to any more radiation than you’ve had if there is nothing telling us that there is a reason to look for something. ”  It has been said to us by Dr. Oncologist and Dr. Surgeon that the cancer was gone after surgery. 

When I think of that last statement, my mind wanders.  A part of me wants to say “how do you know?”  I’m not much of a skeptic, and yet of course I want proof there is no evidence of cancer in my body.  This is something no one can say.  I don’t know.  There was activity in some of the lymph nodes.  This puts me in a different catagory than someone with no lymph involvement.  The nodes are supposed to drain the system and yet they can also be the gateway into the rest of the body.  It is my understanding that we don’t know if the cells that were found in the nodes were being drained out after chemo, or on their way to greener pastures.  We do know that the pathology report said that at least some of the cells found were ‘chemo affected’ which seems to indicate that they were on their way out.

Meeting with Dr. O was a mixed blessing for me.  It marked the end of aggressive treatments.  It was yet another meeting where I’m in the petri dish with others and am part of the stats which mark the survival of the human with invasive breast cancer.  I’ll keep you posted on the Tomaxifen effect.

Birthing Day

I have always taken my children’s birthdays off.  They have the choice whether they want to take the day with me or not.  In elementary and jr high school hanging with me was the choice.  What we did was entirely up to them.  This year on E ‘s birthday he and B went camping.  Looking back, I’m happy to see that I blogged a bit on that day.  At some point on birthing days, we all get together and talk about the birth of the celebrant.  It’s so much fun to hear A talk about E‘s birth.  (She was 2 1/2 and when she saw E hanging out in the pool of water, she was so excited and said  “He’s got a ‘penus’ just like Daddy!” and  B said, “Now everyone knows my secret!”)  It’s so much fun to hear E tell the story of A‘s birth, even though he wasn’t even a blip on the radar.  (She pooped great gobs of green meconium all over me minutes after she was born.)

A appropriately wanted to be with friends today, but we got to go together to the motor vehicle bureau to get her picture license.   It was a cool rite of passage.  Afterwards I picked up her car from school and took it away for a couple hours and put a few surprises in it, which she will be experiencing just about now.  I’ve spent the rest of the day preparing her chosen meal and thinking about her. 

This is one of those times when it seems that all the constillations have lined up in the right order.  Radiation ended yesterday.  A‘s birthday today, mine tomorrow, mother’s day on Sunday.  Whether it rains, shines or blizzards, I’m happy.  I met with my herbalist yesterday and am now on new herbs for boosting my immune system, detoxifying and energizing my body and mind.  I will be doing a nutritional detox in a week or so as well.   It’s spring, there is new growth as we come out of the time of rest and darkness.

I have thought a lot about our children, our nieces and nephews, the children of our friends and our children’s friends.  I tend to get along with kids, and have loved watching all these young people growing up.  Many of these people have known me for a long time, so I would imagine hearing of my diagnosis and seeing me change before their eyes might have been challenging to some degree or another.  Seeing me vulnerable has made some others feel vulnerable, if that makes sense.   In spite of learning that someone they love had  a life threatening illness, in spite of my ups and downs, being tired, losing my hair, not being able to participate to the extent I usually do, they found strength to greet me with smiles, hugs, cheers, chats.  Some broached the subject by asking to feel my head, or how I was feeling, or what it was like to have cancer.  Some treated me like nothing was going on and this was wonderful.  I want to thank all the young people in my life and in my children’s lives for keeping things moving along when our family was in a sort of limbo.  This has been a long 9 months.

B had mentioned in an entry long ago that the timing of diagnosis and treatment was similar to that of our pregnancies.  Childbirth for us was an amazing and energizing affair.  Bringing these lives into our lives and learning together has been such a treat for us.  Breast cancer diagnosis, treatment and now recovery is and will be a learning together.  All of our supports are learning with us as well, still checking in, letting go of committments they took on to help us through with tenderness.  We all have changed because of this.   Birthing day, indeed.

30 seconds left

I went to book club last night with women who have been among those at the head of the stampede and who have been flying with the angels.  My intention was just to say a quick hello, I hadn’t finished the book, and I’m kinda tired.  I left after an hour and a half. (a quick hello)  As I left there was cheering and chanting  (Ok, maybe not chanting but at least ONE was saying “30 seconds left…30 seconds left…”)  This group has held me and carried so much of this with and for me.

When someone says “You have done so well through this…” I look back and would agree.  I must say, however, that we had a matrix of support.  I’d just change that sentence to say “We have done so well through this…”  There will be plenty of time for me to reflect.  If you’re still reading along, there will be more soon.  As for this weekend, I’m going to enjoy A‘s birthday tomorrow, my twin brother’s birthday Saturday (OK, it’s my birthday too!) and Mother’s Day on Sunday.  There’s nothing like the feeling that this part of treatments will be over today and I have a weekend of celebrations.  Even if I just sit in the peace of my home.

If you want to count down with us, I go in for my last booster at 1:00 EST.  We’ll start at 30…29…28…27…