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!