Children

I have thought a lot lately about children and how they deal with cancer of a loved one or their own cancer and treatments.  A and E, our sweet children, have been troopers.  Being 15 and 13, they are appropriately self focused.  They are willing participants when we need to talk about decisions regarding my treatments or their care when we are not available.  We are giving them as many choices as possible so they can feel somewhat in control.  I’ve been feeling pretty good of late, and it all seems like normal life here at home for now.  With regard to the medical side of things, they want information and will tell us when they have enough.  They do not like to talk about it, of course.  And as E so eloquently posted back during the 2nd round of chemo, dwelling on it does no one good. 

I’m grateful to have some understanding of the developmental needs of a teenager.  As such, I am not always happy about it, but I’m thrilled at the same time that our kids are wrapped up in their lives.  They check in enough, are affectionate enough, and I/we even get double plus good time with them enough.   They could do more dishes, I suppose.  They are each coping in their own ways and they are keeping up with excellent grades, sports, activities and friends.  I know they take the lead from B and I, and we are doing well through this together.  We have gratitude that A and E have come to live with us for a time.

I don’t remember if I shared a story from Tucson about a young girl “T”.  I’ve looked back, but cannot seem to find it.   So I’m sharing some of the story from my journal.  I was with my redwood sister S and we were indulging in all of the water activities at the fancy resort where I was staying.  (We call ourselves the redwood sisters because over20 years ago a mutual friend/colleague said we had to meet mostly because we were both tall with red hair.  It was love at first sight.) We had just left the “lazy river” and went into the hot tub, around 8 pm under the stars.  This was right after I was given my diagnosis, before any treatments.

We were joined by a family of 4.  A boy of probably 4 with a blue bathing suit with red lobsters all over it came in right next to me.  I flirted with him about the lobsters.  His older sister and mom came in next.  Sister could not have been older than 10.  I had seen her shaking her skinny booty with Sponge Bob at the event at the lazy river, and said as much.   Dad joined as well.  Serendipity is a wondrous thing.  This family was from Arizona.  They had been granted a weekend here by the make a wish foundation.   T had some kind of cancer and had finished the treatments probably a few months ago. (her hair was very short, it looked like a really cute pixie cut).  She was proudly wearing an employee name tag from the resort, with her name on it.  Her brother had a cup of cold water and poured it in the hot tub and we pretended it felt cold.  He started pouring hot tub water over our heads when his dad discouraged further activity.  He was really cute.  We told them about us.  The boy thought it was cool that a boy from AZ with lobsters on his bathing suit was in a hot tub with someone from ME. 

We also found out that the big wish was for a white horse.  Apparently T was asked to make another wish and her persistence on the equine (ok, how about a pony?  Ok, how about a foal?) paid off.  She was about to get her horse for one year.  So, how about this? My friend S is a cancer survivor who is really into horses.  She told them as much and that the cancer has not returned for 12 years.  Dad spoke briefly about the process of treatments and how brave his girl was through it all.  Mom and S talked about horses and stuff they would need.  It was delightful.  The girl just mentioned slight reference to her treatments, but was so focused on the fact that the horse was coming in October.

T had her family supporting her all the way.  She was so cavalier and made reference to ‘the time when (she) still had (her) port’ just as a reference as she was going on and on about her wish for a horse and other interesting things. 

As I think about my reaction to chemo, I wonder how the heck children, (and elders or those whose bodies are compromised for other reasons), COPE with the negative side of the chemo drugs.  How do children make sense in their child minds of what cancer means to them?  Do they even try?  It does not even have to be cancer.  I learn so much from our kids, from their friends, our nieces and nephews and from the children I am fortunate enough to encounter in my life.  They certainly have a lot to teach me.  I think from birth children are “G.O’s” until something changes that.

A friend send the following link to me a couple weeks ago.  Everyone I’ve showed it to had a reaction to it, and B suggested I include it, so here it is.   Thanks so much M for sharing it with me.

11/7/09

Hey you guys.  Well, the snow did amount to something after all.  We woke on Friday morning to a beautiful white canopy at our house.  I know some were cursing the heavens, but “G.O.’s” love the first snows.  I do.

Last night I received a bunch of calls from the anesthesia department at the hospital just checking in with stuff to prepare for Tuesday.  I had just visited with my herbalist the day before, and received some presurgery herbal support.  The nurse said that she is supposed to tell me to stop all herbs and when I explained that I doubted my herbalist would knowingly give me anything that would get in the way with my blood clotting, she suggested I speak with the surgeon.  Surgeon was in surgery and would not be able to talk with me until Monday.  I asked to speak with a nurse in the surgery department, she appropriately informed me that she did not know enough about herbs to advise.  SO, I emailed my herbalist and we worked out a compromise.

After the calls I observed my first twinge of fear.  The port-a-cath surgery was the first surgery I’ve ever had, and the anesthesia is being kicked up a notch for the mastectomy.  It’s bizarre thinking that I’ll be checking out for a couple hours while so much is going on.  B plans to be there, of course, with a book, his lap top and all his thoughts.  While the nodes are being detected with a geiger counter of sorts and then run to pathology, while the pathologist calls the surgeon who is working her magic and is up to her elbows in me, while the anesthesiologist makes sure I’m not feeling anything, while the assistants do their thing, B will be sitting in the waiting room hearing each second tick by.  I know that some of you will also be marking time in your own worlds.  I know B will be fine, but I think he has one of the hardest jobs.  I have the easiest job once the anesthesia is administered.  Never having gone through that before, I was amazed that it felt like I was being prepped one second and told that it was over the next.   I am fully aware that so many of you will be holding me up during that time when I’m beamed up to the mother ship.  Gratitude abounds.

Between now and that time when I go into lala land, I must remain awake to my thoughts.  I have enough energy to do the things I want to do this weekend.  On Monday I’ll be working a bit in the morning.  My toughest job, I think, is just observing my thoughts and not getting stuck in them, especially if they are anxious in nature.

As far as surgery updates go, I have no idea when we will be able to post anything here.  I hope you can assume that things went well.  Our surgeon has over 20 years experience, and we have a lot of confidence in her skills.  This is  becoming a fairly routine surgery, unfortunately.  We know that the PET picked up no activity.  We don’t know the node involvement and will know more after Tuesday.   If there is limited node involvement seen, then I may not have to have radiation.  If a lot of nodes are involved, then radiation it is.  Others have had to do this and got through it just like getting through chemo.  If many nodes have to be removed, then I may have to deal with arm swelling, and there is a bunch of stuff to be done about that, and that would be rather permanent if I understand it correctly.  I will have my life and at this point that is the ball my eye is on.

11/5/09 Day 16

This morning I’m watching the first snowfall from our dining room window.  It’s not amounting to much, which is good because I have some appointments this afternoon, but it still gets me in the mood.  I love the change of seasons, whatever time of year it is.  I feel really close to normal today.  I just cleaned the house before the woman who comes to clean arrives.  Ya know?  Never having had a cleaning person in my house, it’s something to get used to.  It’s the first Thursday that I’ll be home when she gets here, and not on my way to get a neulasta shot, or some other treatment…in 8 weeks. It’s funny to tell the kids to clean their rooms on cleaning lady weeks.   If she cannot find the floor to vacuum, there’s a problem.  This cleaning lady is and angel sent by an angel.

I went to work a couple of days this week, but truthfully I am getting more work done from home than from work because much of my time is spent entertaining loving hugs, questions, and visitors when I am at work. (Not that I mind this one bit…)  I’m working about 20 hours this week, and feel good about this.

A friend left a message for me at 3 pm yesterday that went something like this:  “I ‘m sorry I didn’t reach you, I wanted to wish you a Happy Day 15!  Hopefully you’re napping and NOT working…”  I was so happy to call her back first to thank her for the Day 15 wish, and to say that I was neither napping nor working.  I was with A and some friends at the Eastern Maine Soccer finals.  I actually felt like I was playing hookie from work for the first time!  We left the game and I was reminded that the sports recognition night at the high school was at 6pm.  We had no time to get home and back to school.  Alas.  I went to bed at 8:30, as soon as I could say hi to B and E, stare at the beautiful fire in the fireplace for a minute and pet the katz.  Boy didn’t the felines have a lot to say.  I think I left the house at 9:30 am…ooops.

Thank you all for continuing to read this and for sending all the love and hope that keeps us buoyant.  Some of you have asked about the surgery, which tells me that I/we did not exactly include specifics.   I’m getting a mastectomy without reconstruction.  Both B and I thought that waiting to see if I want reconstruction after living without it for a while, was the best thing to do for many reasons.  The first reason is just that, I don’t know if I’ll want reconstruction.  Another is that I am thinking that removal of one breast is enough for now.  I don’ t know if I want a foreign object to deal with too.  I am told by some women who went this route that they are glad they did.  They felt ready to make decisions about whether or not to do reconstruction, and what type of reconstruction, after they were 6-12 months out, a bit clearer headed, and less emotional about the whole ordeal.  I have been told by several who had reconstruction at the same time as the mastectomy that they wish they waited.  That was enough for me to feel good about the choice.

I think I may have said this before, “never have my breasts caused such a sensation”.  I have been struck by the willingness of women to talk openly about their bodies.  I mean all women, not just those who have dealt with cancer.  I am also struck by the men who are interested to get in the conversation too.  Not as many men have asked about the nitty gritty, my brothers maybe, but not many others.  It’s got to be an interesting thing to contend with.  I don’t want to get started on the breasts and society thing.   But truthfully, I have found myself wondering how much do we share?  Who cares what goes on underneath my shirt?  Here I am, essentially in a public forum, sharing my thoughts, decisions and feelings about my own breasts.  It’s not all about that in my opinion.  This is about my health.  People keep on reading.  I love that.  I appreciate the people who are asking “so what exactly are you having done in surgery?”   If you want to know, just ask.  Obviously we are interested in getting the word out, and helping someone who may come across this blog some day.  I have to say, the idea of people thinking about my breasts makes me smile.  It’s about time!

I asked the surgeon to draw a picture to show us what exactly gets done during a mastectomy.  She did so in a way that gave us a good image of the process.  I never thought about the fact that mastectomy crosses no other barriers, if you will.  The tissue is scooped away from the skin, and the muscles that used to be removed during the days of the radical mastectomy are left in tact, unless the cancer cells have attached to the muscle.  Even in that case, apparently, only partial removal is necessary.  I don’t know if radicals are performed any more, but believe me, I’m so grateful that medical advances have taken place.  Our surgeon said the physical recovery from this is fairly simple, and is easier than dealing with chemo for most.  This was confirmed over and over by others who have had mastectomies.  She was sensitive to the emotional material that is attached to this whole experience.

I have emotional material, but at this moment, not as much as one might think when the idea of losing a breast is posed.  You know there are some things that define us as men or women to others.  There are some of us who don’t care whether someone can tell if we are male/female.  Losing my hair and now the prospect of losing a breast has me thinking about this.  At this moment I do not feel that it is a loss of identity.  My hair may be a bigger loss for me than my breast, truthfully.  BUT I’ll keep you posted when the hair grows back and the breast doesn’t.

I was quite a diary queen when my kids were born.  In fact I remember that I was nursing my kids at my parents house one day.   E was brand new and had finished and A came by for a sip, and Pop looked over and said “that’s my girl”.  I could not get over the fact that he looked like a proud peacock about something like this.  I also had the honor of donating milk to a friend who adopted a new baby when I had more milk than we had freezer space for.  She was trying to stimulate her own production.  This was incredible for me.  The best part of that was the day she showed up at our house for the next cooler full, and when B opened the door, she said “look!” and lifted her shirt and squeezed her nipple and milk was coming out.  (B’s expression was priceless, by the way.)

I asked the women I will call my mentors what they were thinking/feeling before, during and after.  As expected I got a myriad of responses.  The consensus was that they were really ok about it.  Many said that they were reassured by their partners that they were loved for who they were.  Some said that the emotional processing went right along with the events at hand, some noticed that processing happened months/years after the surgery.  The extent of grief in these women was variable.  All said that dealing with the drain was a pain, but generally it was because after the first 2 or 3 days, they were ready to get up and go, and the drain flopping around was annoying.  Well now with the spiffy new and improved drain pocket that can be velcroed anywhere around my ribcage, I feel like I’m going to be the happy patient, frolicking about with no cares in the world!  Yea, ok, maybe not exactly, but you know what I mean.

There is a practical side that B and I spoke about regarding the fact that my clothes fit me right now, and it would be nice if I could wear the same clothes after this is done.  There is a balance thing, but after looking at me, the “fitta” told me (with tact) that I shouldn’t have as much of a balance issue as, say, someone who is a 44 J cup.  🙂  I’ll keep you posted on that one.

11/3/09

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.

11/1/09

I’ve heard from several people that they were chomping at the bit waiting for the surgery news.  Several loved ones told me/us that they were checking the site throughout the day on Monday to get the skinny.   The analytics site told B that the viewing of the site peaked incredibly that day.

We were intentional in our writing of “the conundrum”.  Intentional in the time we took to let it all sink in.  Intentional in waiting to write until we had some of our thoughts and facts in order.  We wrote separately and looked over each other’s entries until we felt it expressed what we wanted to communicate.  Sometimes I sit at this computer and just write.  I call that journaling.  I may have referenced that before somewhere.  I just close my eyes and let my fingers communicate to the document what is going through my brain.  This I do when I feel overwhelmed, cannot think straight, cannot sleep, or when I just have to get something out of the circuitry.  This information is too raw for me to have floating in cyberspace.  It’s also information I may never want to read again.

I understand now after a long conversation with R, Brother #1, (and D in the background) the other day that they were very interested in what I/we put in the blog, but were unaware of the extent of the discomfort I was going through.  Do you know the feeling of loving someone so much that you want to know about all the gritty details?   You wouldn’t believe how many times I edit and edit some of the entries before publishing.  When I am feeling on the low end I have no desire to do intentional writing or draw or anything that would suggest being in the moment.  I’d rather chop wood and carry water to get the circulation going.  But I’ve had a few people help me get to the nitty gritty, the depth of the sad or discomfort, and this has been necessary to help me move on at times.  It’s a delicate balance at times, to honor what I’m feeling/thinking, and not get caught in suffering.

So what’s the point in what I’m writing today?  If this information is going to inform and educate loved ones and others who may be going through this, it’s important to include some of the nitty gritty, I think.   Somewhere I or we mentioned that this last treatment knocked me for a loop.  I want to try to describe that just so you understand that I’m not just marching through this unbruised.  I and we are getting through it the way we know how.  I don’t think it is necessarily either honorable or brave.  It just is.

I’m still in the 14 day window of the chemo cycle that I’ve been in for 8 weeks.  I was told by others who went through the AC (Adriamycin and Cytoxan) chemo regime that there was some cumulative effects as treatment went on.  Each woman had different things to say about how she was effected.  Let’s see, I’m on day 12 today.  I am still dealing with a ‘not quite up to par’ feeling.  Every day seems better from the previous, but it is not as predictable a climb out of the hole, and sometimes out of the blue I feel crappy.  I am trapped in this body that I think is anticipating another infusion in 2 days.  I have times when I think I’m nauseous and if I eat something I feel better.  Sometimes that does not help.  I have times when I just need to close my eyes.  Sometimes I nap and sometimes I just do the sensory deprivation thing.

I have been fortunate that I have not had significant mouth problems.  Some women I’ve spoken to have gotten terrible sores and infections in their mouths and throats, yeast infections and other painful stuff.  I was fortunate that my dentist office had a cancellation like 2 days before the first infusion.  My 6 month cleaning was scheduled in the middle of the chemo schedule and I was told not to have cleaning during the treatment.  It was not safe for me, nor would it be safe for my dentist or hygenist because that stuff stays in my system and is just not something that should be aggrivated (my interpretation).  Fortunately I got the call to come in just in time, and check it out, my insurance company PAID for the cleaning and it wasn’t 6 months from the last…almost, but not exactly.  Usually they will not fork over a dime for an early cleaning.  My mouth feels weird.  I cannot taste well.  I am really sensitive to extremes in temperature or even the slightest hint of spicey (darn it anyway), and it lingers.  It hurts the skin in my mouth.  When I yawn it feels as tight as a drumhead along the skin between my jaws behind my molars.  My gums right along the tooth line feel shriveled up, sort of.  I was told not to use any harsh mouthwash at all.  Just salt or baking soda and water.  I have to use as soft a toothbrush as I can find, and have to be vigilant about flossing to keep my gums as healthy as possible.

My skin is very itchy in patches.  It’s typical for me to have banged up hands because of the shinanigans I get into in this fixer-upper of a house.  The bangs don’t heal in time for the next bang, so my hands have a lot of character these days.  I have to be careful not to get an infection.

The G.I. thing is annoying. Nausea sucks.  8 weeks of intermittent nausea makes me so self absorbed at times I can’t stand it.  If I take the anti-nausea meds it’s pretty guaranteed that constipation is next.  Which would you rather be on any given day, nauseous or constipated ?  Anyone?  Anyone?  Fortunately the only day I had diarrhea was day one cycle one.   Hot, cold or spicey is not good for my mouth OR my intestines.   There are times now in the cycle when I don’t notice anything.  There are times when I notice everything and if I’m not hearing good digestion sounds coming from my abdomen, I do some massages recommended by my acupuncturist which can really help sometimes.  I want so badly to be back to normal that I may order stuff I should not in the mexican restaurant.  Thankfully my family likes my choices and will help me clean my plate!  I should just eat apple sauce every day, probably.  I get excited when I have a good bowel movement. (God, I cannot believe I’m writing this!)  One of my brothers was visiting and I came out of the loo cheering.  He looked at me with that “I don’t know if I want to ask what that was about.” face. (You know, I can think of quite a few people in my life…including this brother…who would be eager to brag about such an extraordinary “event”.)

The fatigue is annoying.  It is what it is.  On most days, I get myself to bed by early afternoon, but stuff happens.  Like our refrigerator decided not to cool the other day, so I called the appliance guy.  He instructed me how to diagnose the problem, so instead of napping, I’m trying to save the refrigerator, unscrewing things to check out the compressor, pulling the guts out to see why the cooling that works in the freezer is not working in the fridge.  Put the darn thing back together, food in coolers and hit the bed at  3:30.  I don’t do well with later afternoon naps.  Let’s just leave it at that. 

Emotionally, I have found myself short tempered or overly sensitive at times and I just don’t like being that way.  I’m ok with it because it just is what it is.   I observe myself saying/doing things that I don’t like.  I am truthful when someone asks how I’m doing.  It’s such a loaded question these days, can you imagine?  IF it’s a good day, I say “today I’m doing ok”, because today is all I’ve got.  It’s all I’ve ever had, but it was easier to overlook the junk when most days were OK.  I’m not as sad at this point as I have been.  A, (15), asked me the other day when she was home sick from school, why I have been so sad.  She was wondering if there was information we have not given her.  I assured her she knew everything we knew.  The sad is not about a bad outcome, at least I don’t think it is. 

My hair loss has really been an issue to contend with.  I think gradual hair loss must be hard…sudden hair loss is quite a whallop, at least for me.  I don’t like not having hair.  I’m dealing with it.  I’m into the comfort-over-fashion thing (which is consistent with how I’ve been for a long time), and wear cotton hats most of the time.  When I go to work I feel like I have to wrap my head so I take out the scarves.   Seeing it flowing in the breeze the other day gave me a sense of something like my hair blowing, and that felt pleasant.  It’s annoying to have something on my head all the time, especially because ALL of my hair did not fall out.  I have the 6 o’clock shadow on about 60% of my head.  It acts as velcro to keep the hats and scarves in place, which I have learned is a blessing.  I walk around at home without anything covering my head when I get hot or sick of having something on.  If I am outside, in the car, or out in public, baring my head feels cold and vulnerable.  If it were summer I may have dealt with the vulnerability by now, but since I like being warm, I don’t really have to deal with it.  Plus there are cool winter hats that I can wear now.  When I had hair there was so much of it that serious hat head was a deterrant to wearing hats for too long. 

The only other thing I can think of that is in that loop that I get knocked into, is my chemo brain.  Yesterday I was at work and found myself talking with 3 other women.  3 out of 4 of us have had to deal with breast cancer.  I think the odds are 1 in 8, so this was really a remarkable ratio.  All of us were in our 40’s and 50’s.  Is it premenopause, menopause, genetics or chemo that we are describing?  Who knows, but geez, chemo sure exacerbates things.  I was told it would put me into menopause, which I have not noticed yet. (What an entry THAT will be, I’m sure!!) It’s like I just cannot focus at all at times.  It’s like it enhances my natural attention deficits.  I really appreciate this.  And I’ll have to give you a warning.  It seems to be contagious!

SO as I re-read this, I am aware that I feel like I’m whining, but really I’m just telling it like it is.  Truly, I’m not judging myself.  I received a card (with sound)  the other day that was PERFECT.   It pretty much sums it all up.  For those of you who grew up with Gilda Radner on Saturday Night Live, this will bring back a smile.   We found the card/recording on YouTube, but could not find her live, so you’ll be looking at the front of the card.  Thanks Roseanne Roseannadanna.

So that’s the skinny on what I deal with on a day to day level.  I don’t blog when this is going on usually.  It also MAY be that I’m having such a great normal day that I don’t think of blogging.  Going to soccer, taking our son to a party, raking leaves, going to work, going out to dinner with my family, hosting six 15 year old girls for a halloween overnight… you know, stuff like that.  I can understand from a concerned person’s perspective that silence can be interpreted that things are not going well.  (Is the glass half empty or half full??)  Please be assured, that if you are getting anxious, that you are WELCOMED to call us.  If we are out having fun we won’t pick up.  If  “I’m depressed, I gained weight, my face broke out, I’m nauseous, I’m constipated, my feel swelled, my gums are bleeding, my sinuses are clogged, I’ve got heartburn, I’m cranky and I have gas”  you probably DON’T want me to pick up!  We both DO check email almost daily, so if you are curious, please just comment on the blog.  It goes right to us and we will get back to you.  You being in the know is important to us. 

Today I am only tired and itchy.  I feel on my way out of the hole.  I have some energy, some appetite and am in a good mood.  Thanks for sticking with me and us through it all!

The Conundrum

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

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

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

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

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

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

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

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

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

We feel you

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

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

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

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

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

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

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

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

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

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