I haven’t been writing in a while. I haven’t been feeling for a while. I actually haven’t been “present” for quite a while. Overload doesn’t even begin to cover it.

 
Writing has been my outlet for as long as I can remember being able to write. I used to go crazy if I could not write, could not get my feelings out somehow…I HAD to write. At this point in my life I guess I’ve proven I can go five months without insanity kicking in…wait, maybe I can’t…maybe I AM crazy. Oh, that would explain so much!

 
What’s pushed me over the edge to actually have NO CHOICE but to write?

My mentor, my rock through the evil of new Breast Cancer diagnosis, my “There now, there, there now” Mama Figure is headed back into rough, scary, unknown waters. Maybe it’s the known waters that are actually scarier.
Explaining Debbie is ridiculous, there’s no point really. Nothing I can try to put in words could convey the safety I felt when we would text or chat or talk in the wee hours of Cancer, when the rest of the world is blissfully asleep. No flowery adjectives or impressive metaphors are able to capture the love, empathy and courage she instilled in me as she patiently answered every question I asked, even when the answer was beyond horrific.

Many times I posted links to her blog, her DAILY, WITOUT FAIL, yearlong blog about her personal Breast Cancer journey, (here it is again…www.writergirldreams.com. It is a must read for those of us in the “Pink Club”), a shameless, honest, raw, tear your heart out journey that makes us feel so normal. I wanted to put her in my pocket and pull her out every second I felt scared, to give her as Birthday presents, Christmas presents and Just Because presents. Because I believe EVERY single person I know would gain sooooo much enrichment in their lives just by knowing her.

 
It was only fitting that we were supposed to have surgery on the same day next week…me to fix my ankle, (not even going there), and for her – her new boobs she’s been dreaming about and waiting forever for!! We’d even planned our recuperation in some remote, exotic tropical place, with specially trained RN/island boys to tend to us and tulips everywhere. Thing is… she’s not getting her surgery.

My Debbie has to go for an MRI instead. My Debbie has a very painful “pinched nerve” that they think might be “something” in her spine. My Debbie has to entertain the thought of the unthinkable.

That is what has pushed me over the edge.

 
I have not physically met her yet, but thousands of others have. She’s spoken all over CA at Race for the Cures, Relay for Life, etc…but I will. I will get out there to CA and wrap my arms around her and stroke her beautiful blonde curls and tell her, “There now. There, there now.” Pray for my Debbie.

It seems that I was in hibernation. For quite awhile. I guess my insides told me it was Winter.

Strange that my hibernation would come just as my Chemotherapy was ENDING, I will never understand myself! May 31st was my last chemo treatment and as exciting as that should have been for me, I just didn’t feel like celebrating. No parties, no huge joy or huge relief, just the knowledge that chemotherapy was over.  Propriety or “politically correct” speaking would probably keep people from voicing that…but, not me. I should have been SOOOO grateful, yelling big “WoooHoooo”‘s, but honestly, I just didn’t feel it. Maybe that’s why the hibernation kicked in, I once again, wasn’t feeling what I thought I SHOULD be feeling. Much easier to pull away and hide then be seen as ungrateful or negative.

“Cancer changes you.” “You will never be the same.” “You will learn to appreciate all the little things.” What the heck is wrong with me?! I do not feel any of thes things yet. Is there some magic point along the way when all of a sudden it all falls into focus and I am brought to an entire new plane of existence? If there is, I sure haven’t reached it yet. When I try to cut myself a break I stop and realize that it has only been six months since diagnosis… SIX! That’s not very long, right? As a matter of fact, I wonder if I have even truly grasped the fact that I HAVE Breast Cancer, maybe I am still in denial. That sure would explain a while lot of things.

Regardless of whether or not I grasp it, this “thing” has been happening to me, to my body. My fuzzy hair is growing back, kinda like a “high and tight” right now. I am 19 treatments into Radiation, which is steadily burning my chest, I have about 14 more to go, and today I had my first “Port-flush” to be sure the port stays functional, “just in case”. They won’t remove it until at least after my first “follow-up” scans, in December… sigh. One thing I have total peace about is keeping my breasts. After getting a very renown second opinion, my treatment plan and team of doctors were affirmed, and I was told that with all of the specifics of my cancer, there is no difference in recurrence rate whether I have a mastectomy or lumpectomy & radiation. Keeping my breasts thank you very much, NO MORE SURGERIES…I did NOT want to go through that!

While I’m at it, here’s another taboo in this Fighting world of Pink…I don’t feel done. Honest, not pessimistic or speaking negativity into my life, I just plain ‘ole don’t feel done. That is NEVER heard, and I would LOVE for me to be proved wrong…someday…hhmmm, when would that be exactly?

For obvious reasons I have been thinking about my mother today. There is no way possible that she’s been gone over 14 years already, that’s insane.

Since being diagnosed, I have thought sooo many times, “I am so glad Mommy did not live to see/know this.”  I mean that 100%  on her behalf, because I know that this would have broken her heart, I mean that 0% for myself, having my mommy alive while having to “do this”…I can’t even imagine the difference.

We lived very far away once I got married, well for the first two years, then we lived VERY CLOSE for the next two years, then very far away again for the last 3 years. Even so, whenever I lived “away” and there was ANY trouble, hard times, death, birth…she was on the next plane, seriously! Surprise boxes of goodies showed up in the mail for no good reason at all except that she was a “Clearance Shopper Addict. Whenever she saw anything that made her think of me or the kids, she bought it and sent it. So there is no telling what she would have done with this “reason”. My parents and brother may have finally moved South!

Disease is not an unknown entity with my family, my mother died from Polycystic Kidney Disease, and it was not easy, for any of us. I admire how she “did” her disease though. She fought and researched and went to conferences and read books and was IN the doctors faces… her kidneys didn’t care. Not one freaking bit. When she finally had to go on dialysis she decided on peritoneal, the kind she could do at home…  I remember driving in the car with her, as she “hooked-up” and hung the IV bag on the luggage hook on our way to lunch, or going to the City to visit Gram, or going to a Family Reunion…she was not going to let it slow her down… for as long as she could.

Her road was so bumpy, things were never quite smooth or responded as expected, and she got sad, but what an example. Psalms was the book of the Bible that she read most frequently once she was “slowed down”.  Going upstairs to bring her tea(hot) and a toasted english muffin,(with real butter, but I had to wait to let it cool down some so the english muffin wouldn’t get soggy), I would find her reading Psalms. Sometimes tears would be flowing, sometimes not. Many times she read aloud to me the one she happened to be reading. I am so humbled to remember that, I have not been so…faithful…?  I thought I would be.

Sometimes it feels like it was all some other lifetime, that she wasn’t real and it really was all a dream, but I have this 13 inch scar wrapping from my lower, left abdomen, around my side to my lower, left ribcage that tells me otherwise. She did NOT want to leave us. Oh how she did N O T want to leave us. We did not want to let her go.

At one point during the entire mess of failing kidneys, congestive heart failure and fluid filling lungs, she said to me, “Well, I always prayed that God would not let me get Cancer. Guess I should have  been a little more specific.”  As much as I would love my mommy’s soft hands rubbing my face, or her “Whiskey Tenor” singing hymns to me while I’m recovering from Chemo, I am glad she was spared this one pain.

This was my first-born sons Facebook status today. My heart broke alittle.

How do I put into words the love I have for my oldest son?  Every child has their own unique place in our hearts, the place only they can fill…my son was born 14 months after my first baby died…he had a HUGE place to fill and from minute one, he has done just that. 

He has the most amazing, big, brown eyes. The very first time he looked at me with them, it seemed as though he was already wise beyond his years. So calmly he blinked those eyes, looked into mine and all was right in the world. Today those beautiful eyes were very sad. He knows how to hide it well, but not from his mommy.

Laughter, and I mean HYSTERICAL, non-sensical laughter, has been a huge part of the foundation of our home, and he was and IS renowned for his sense of humor. He and I have cracked each other up at the most inappropriate times and have lived through some ferociously hard times because of it. One slight problem with the gift of  “being funny” is that it also comes at a high price…not quite being sure of what to do with all the other emotions. As much as I have tried to tell my children that “It’s ok to cry” , only the younger two seem to believe me and practice regularly.

Funny is safe. Anger is safe. Even depressed is pretty safe. Fear and sadness…not so much. They leave us vulnerable and exposed and feeling VERY out of control. I see this in him, he learned this from me.

Apparently I am now  providing him the opportunity to have to face those emotions. Oh how I pray that he does! That he faces them straight on, allowing himself feel them, to walk through them and see that he won’t be lost inside of them. It’s taken me almost 40 years to do that, and it is still something I have to work at believing …that I won’t drown in the fear and sadness, that I am not and do not have to be alone in it. For him to learn that now, so young, would be something I would be so much more proud to have taught him.

God, our belief and trust in Jesus Christ has been another HUGE part of the foundation of our home, and again, he was and IS renowned for that. He has struggled and dug deep into the Word, has lived with integrity-in-reality…meaning he is striving to live what he believes, but isn’t perfect, (I just need to make everyone think that bud, I know you really are), and has a real, true, tested faith. Now God is taking him to a whole ‘nother level. This is his Divine Interuption…his place of God saying, “Do you trust me with this one? Do you really know AND believe that I love you?” Oh how I pray he “has it out with God”, knowing that God is big enough to handle his fear and sadness and even anger…that he wrestles it out like Jacob and holds on until the blessing. Again, it’s taken me almost 40 years to get near that place, and obviously am also going to a whole ‘nother level. For him to go there now, at such a young age…another legacy I would be proud to leave.

I’m glad he hates cancer. I’m glad he doesn’t want me to have it. I hate that he has to “do this”. I pray he does.

After reminding and joking with my kids for the past week about my hair coming out, I decided last night that I do NOT want to be bald.

Every night, I go through this ritual, pretending that I will close my eyes and fall asleep.  I turn off my book light, put down my Kindle and take off my glasses. I fluff my big, comfy body pillow and arrange all the other pillows, under the guise of preparing to rest, when in reality I know that as soon as I’m still…the thoughts I’ve been pushing away all day will be  unleashed.

So last night I began my ritual and got as far as arranging the other pillows. Oh, I also have a fan at my bedside…white noise, night sweats, whatever…it’s there…  I always face my fan. I love the air in my face, I NEED the air in my face, but for practicality purposes, if I turn the other way my hair blows in my face. So I rested my head on my pillow, facing my fan and hair tickled my nose. I reached to brush it back, but it wasn’t attached and it wasn’t just one.

I got out of bed. I needed to do something. I needed to be awake. I needed the light. I needed this not to be real. A true sob came out of me, like what I read in all the novels and I covered my mouth just like the heroine would. I walked out to my kitchen and back to my room, then crawled into my bed, cuddled up to my husband and wailed. Grief totally overcame me and I sobbed. He rolled over and held me. I told him, “I don’t want to be bald” and he said he loved me.

Letting myself cry and feel pain is ridiculously difficult for me. Shielding my children from seeing me sad was something sooo important to me, in a warped reasoning sort of way, and last night, my 16 yr old daughter heard me. She not only heard me but shared it with me.  As I lay there curled up and bawling, I heard my sweet, tender-hearted, care-taker girl say, “Mama?” I rolled over and opened my arms as she crawled into bed with us, crying right along with me. I told her, “I’m sorry, I just don’t wanna be bald”, and that precious women-girl told me, “It’s ok mommy, I don’t want you to be bald either” and we cried some more. 

Many women with Breast Cancer decide to shave their heads when their hair starts to come out. I’ve thought all along that I would also, it just seems like that’s the thing I’m supposed to do. Families make it a “big deal”, kids taking turns shaving mom’s head to kinda take the scariness out of it, or something like that.

 My children have no interest in shaving my head and really, would rather I didn’t. Quite frankly, I have no desire to either. I also have no desire to walk around looking like a “Cancer Patient”, with patches of bald head between patches of hair….  Thinking of all the amazing wigs I have just makes me wanna throw up. I do not want to wear wigs, I want my hair. I have no idea what I will do.

I know this is temporary. I know this will not kill me. I know my hair will grow back. I just don’t wanna do this.

Two weeks since first Chemo treatment, I would know this even without a calendar because my hair is starting to fall out.

I’ve really had an “easy” time as far as expected side-effects, no nausea or vomiting and minimal fatigue (nice long naps took care of that). Last Tuesday I had about an hour of intense bone pain. I really couldn’t comprehend what “bone pain” was going to feel like, I still don’t know that I could explain it, but involuntary tears ran down my face as my “labor breathing” did not help one bit. My youngest son was the only one home and took such good care of me. He got me tissues, ibuprofen, an ice-pack sat with me and rubbed my hand.

He said, “I am so sorry mom, I can’t even imagine what you’re feeling right now.”

So simple, so sincere, so amazing. Why is it that adults try so hard to find the right words….and kids just speak what their heart says. 

Maybe it’s because of this next simple, sincere and amazing “for a whole ‘nother reason” statement he made…

Reminding my kids that my hair will be falling out has been very important to me, I just don’t want it to catch them off guard. Today after I picked up my son, we went to get his sister and I was talking about my hair thinning out… oh, I also brought our dog Sadie(who is a Boxer/Shepard mix and shedding), for the ride, which means the back window stayed open.  Anyway, we get my daughter, and start driving home…since he is youngest he sits in the backseat with the dog….and here’s the quote for the day, ready……”Ugh, Sadie!!!! There is so much hair flying around in here!!  Orrrr, is it mmmooommm???”

Gotta love the kids. Xoxo

3/23/11

   Since I was a little girl I HATED going to the dentist! Well, I loved the “Treasure Box” we got to pick a prize from…and the new toothbrushes…and the mini-sized toothpaste…but I swear that’s all.  No matter how much Novocain I was shot up with, I always felt at least one jolt of pain straight through my tooth, no joke…ALWAYS.

   As an adult I found the magic of Nitric Oxide…ahhhh the “laughing gas”…until our insurance changed and it was no longer covered…no gas, no dentist! (Or is that “no shoes, no service”…or “no shirt, no service”…or if you ever went to Glen Rock High School and had Mr.Harry Comiskey…”No Tickey, no Shirley!” Anyway……In preparation for Chemotherapy, one thing I had to get done was Deep-Clean of my teeth. I have avoided doing this for at least two years.

No avoiding it anymore.

Gum and mouth issues are a very common side effect of Chemo., and assuring the cleanest, healthiest mouth beforehand is HIGHLY suggested. The stupidity of not doing something I actually had control over in this crazy mess was not an option.

Yesterday I went to the dentist. Granted, she was amazingly sweet and the staff was equally sweet, but regardless of their sweetness…it was a DENTIST office. I sat in one of the most comfortable chairs I have ever been in, and did my deep breathing.

X-rays…no problems…poking my gums with tiny torture device…not too much problem…coming at me with injections of Novocain…little problem…turning on the “DRILL”…pretty big problem…that is, until she began. 

   Of course the regular dose of Novocain didn’t numb me, so she had to do an extra shot on my left side and two extra on my right,(numb up to my ear thank you!) Trying to fake myself out and doing my best to appear relaxed, I was suddenly aware of my hands that were folded in my lap…my two index fingers were stiff and straight up, pointing at each other as if I was doing, “Here is the church. Here is the steeple…” Ugh…so embarrassing. Consciously I relaxed them as slowly and causally as I could, only to notice it again in about two minutes, dang fingers!

Finally numb, the “drilling began”.

As I sat there convincing myself to continue breathing, (and relaxing those ridiculous fingers), I felt the dreaded, familiar jolt of pain. Immediately my entire body wanted to jump out of the chair, (although it WAS waaayyy comfy), and scream “STOP!” But just as quickly the realization hit me, “This is nothing. This is SO nothing. I have Breast Cancer. I have been through needle biopsies, lymph node biopsies, a lumpectomy, a re-excision… and was going the next day, (today), for the placement of a port for Chemotherapy…not to mention the ACTUAL Chemotherapy…AND not to be left out the future mastectomy & reconstruction! Pssshhhhaaaww…this is nothing.”

My mouth, (and face), was so numb I had to wait several hours to see if the alignment of my “bite” was correct…it was a little off on one side. I went back, sat in that chair, (how much are those anyway?), and she “sanded” my tooth down.

No Novocain.

Perspective.

 (I did get a new toothbrush and toothpaste!) 

5/15/2011

 One thing I have learned…really, really, really ALWAYS bring someone with you to EVERY doctor appointment.

 It has been said on every talk show, written in every book about healthcare and I have even insisted on going with friends to their appointments, yet I ignored the #1 rule of “Informative” doctor appointments… I went alone.

   Retaining large amounts of information has never been my forte, so if emotions and unknowns and medical jargon are in thrown in the mix, I am worthless! Nothing good can come from me being alone in that situation. Notebooks and lists of questions are all fine and good, but if nobody is sitting there with me to remind me to “write that down”, or to ask me, “What’s on your list”, those tools are of little value, trust me.

   Out of five doctor appointments last week, one of them was a last minute, impromptu, “I cannot wait an entire week until you get back from Spring Break” visit. Of course it ended up being one and a half hours long and the one I showed up to by myself.  Sitting in the exam room across from my Oncologist, I SWEAR I was hearing every word she said, AND understanding it. I made appropriate responses and comments, having a grown-up, intelligent conversation. After 90 minutes of this intellectual conversation, I headed out of the office, sat in my car trying to comprehend everything we had spoken about. I had no notes, no questions checked off of a list and all of the clear, concise explanations sounded like Charlie Browns “Blah, Blah, Blah, Blah” teacher in my head.

   Oh how I wish I had taken someone with me! I have FIFTY-THOUSAND people offering to go with me to appointments all the time, yet since this was such short notice, seriously, “Can you head up here now”, I didn’t even consider calling and asking anyone to come with me. It should not be allowed to happen. Nobody should ever be allowed to do that alone. It should simply be illegal. I propose that if a patient shows up at a doctor appointment that is in any way, shape or form life-changing, there needs to be somebody sent in with them. A secretary, a nurse, heck a janitor…anybody that can be another set of ears, asking for clarification when they see the “glazed over stare” beginning and that will be available to repeat everything they heard at least three times.

Unfortunately, I do believe that is one lesson I have now learned well.

3/15/2011 12:48am

Oh God, it all hit me tonight. This is real. I have Breast Cancer. I have an appointment at 2pm with a Plastic Surgeon to discuss my Mastectomy. The surgery date will be set and this will really happen.

Trying to go to sleep tonight, I raised my arm over my head to roll over and felt a small pain from when they biopsied my lymph nodes. The thought crossed my mind, “Oh man, I think that hurts? How much is it going to hurt after the mastectomy?” All of a sudden it was real. I’ve been talking about it so matter-of-factly, explaining details and coasting along, wondering when it was going to FEEL real. Well it does.
   I have always HATED to cause anyone hurt or sadness, HATED to disappoint anyone. I have been so focused on the pain and worry this is causing my friends and family that I have not allowed myself to feel anything about myself.  I reached up to rub the spot in my armpit that hurt and it all crashed in on me. It is too much to process. I really believe my brain was somehow trying to protect itself from taking everything in. Talking to my daddy was the catalyst I think. My big, strong daddy who always fixed my problems is helpless. My heart couldn’t ignore that. My brain couldn’t convince itself to not think about it. I feel like I have just put a HUGE, suffocating cloud into the lives of everyone I love, and the responsibility of so many people’s pain is too much for me. In my head I know I did not “cause” this, I also know it’s “the cancer” that is hurting everyone…but the cancer is in ME, I am the carrier of the cause. Tonight I finally realized that I am also the one who is going to be cut and poisoned and cooked and thrown into menopause to try to get rid of it. All of the facts came pouring in; two weeks after the mastectomy, chemo will be started. Two weeks after that, my hair WILL fall out. I will be in pain, be causing pain, AND I will be bald.
   It is too much. I want to hibernate. I want to go away and deal with this alone, not involve anyone else and come back when it’s “over”. When my scars are healed and my hair is back.
   I am slowly processing the thought that is isn’t so much “being needy”- letting people “do” for me and my family- that bothers me, it is the fact that people are worried about me, scared for me, will see me in pain and will see me sick… and I will be helpless to protect them from it.
I now feel like an actual member of the Cancer Club.

Breast Cancer survivors are a completely unique breed of human beings that I have had the privilege to discover these past two weeks.

 Once my diagnosis was “out”, I began to hear from everyone who has ever known somebody with cancer. Out of complete love and concern I was given names and phone numbers, emails and websites of people who would love to talk to me or answer any questions I had. Dumbfounded at the amount, I was beginning to feel like I wasn’t being gracious, or appreciative by not reaching out to them, but I had no clue what to say. I didn’t think I wanted to hear their stories because I had no clue where mine was headed.

Finding out the process others had to go through, or how their bodies responded to various treatments wasn’t going to give me any answers about what I would have to go through, or how my body would respond to any treatments. I did not want to fill my head with possibilities that might not be anywhere near the path I have to walk.

Usually when something tragic or really big has happened in my life and people find out, I have been hit with, “Oh, I KNOW! When I, (my aunt, neighbor, cousin, teacher) had to deal with that…” blah, blah, blah…sharing every possible horror story without regard of my desire to hear it or not. This has not been true with Breast Cancer.  It has been, “You know I had BC last year (3yrs, 10yrs, 20yrs) ago. If you ever want to talk, or have any questions, I am here.”  And they mean it. I have not been bombarded with useless details or TMI; in fact it has been the exact antithesis. Truly, just knowing they were out there and knowing they have survived was good enough for me.

Or so I thought.

Absolute understanding of the need to process and not be invaded upon, while expressing empathy and willingness to simply be available must be an undocumented side-effect of Breast Cancer. Wisdom coupled with patience created the perfect environment for when I was ready to reach out.

The last three days I have encountered various amounts of “new to me” information. Information about procedures, treatments, recoveries and side-effects, information that I didn’t know I wanted to know. Suddenly I wanted to talk. I wanted reassurance from somebody that had to keep living their daily life, knowing they had cancer inside of them and could do nothing or make any decisions about it until they were given more information that wasn’t really enough information at all! Questions were formed from somewhere deep inside of me; about things I could only ask someone who had lived it. And there they were, at Wal-Mart, in the mail, in a message in my Facebook, on the other end of my phone (when I initiated the call), ready and willing to simply be available to me.

In my life, I have met a vast and varied cast of characters, but none have ever had the grace, compassion and wisdom as Breast Cancer survivors.