Tuesday, November 27, 2007

Preparing for Chemo 101

So here I am at midnight blogging...my friends and family would say that is the true sign that I am feeling like myself, but I am going to blame my late night energy on the fact that I still need a nap in the afternoon!

The reality is that I have nervous energy. I think this is something like a college freshman has the week before he/she leaves home and has the feeling that they must do everything one last time before they leave the security of the nest and start a new phase of their life. There is a similar syndrome I have noticed in my brothers as they have prepared to leave on missions--the urge to cram everything in one last time before life changes for a specific period of time. Or maybe its that nesting urge that new mothers have--that feeling that you have to get as much done as you can before that bundle of joy arrives that will change your life forever. So chemo isn't exactly something to look forward to like a new baby or that freshman year at college...but it certainly qualifies as something that is going to change my routine for a specific period of time and will probably change the way I look at life for the next 50 years.

So since my last blog--the ONCO Type DX (oops think I called it a DS last blog--too lazy to go back and edit!) it was basically a sophisticated look at the cancer to attempt a risk of recurrence--and mine came back low--which is good--it placed my chance of recurrence at 9% in the next ten years. So now why am I going through with Chemo?? Because, honestly, I'm an overachiever and 10 years just isn't enough!! Since there are no studies that have gone for 40 years and we just don't know what the cancer plans on doing in the long term we are choosing to "spray the yard for weeds"--seems funny that Ken just spent the weekend giving the lawn its last dose of weed and feed to prepare the lawn for a healthy start in the spring just before our first snow arrived today...and I will go through the same process starting Tuesday--to prepare for future years of healthy springs. So bring on the chemo--It may put me into menopause so I figure I have lots of excuses for my mood swings for the next 18 weeks--and possibly the rest of my life. I have a few cute hats in case the hair thins or decides to exit entirely which my personal medical team (that makes me feel like I'm getting special attention if I call all the nurses, secretaries, lab techs, Drs etc etc...my "personal medical team") assures me is only a slight possibility...but most importantly I have a big fan club to cheer me on and help me do the laundry when I'm not feeling up to it....which I'm thinking might last the rest of my life too!!

So until Tuesday--you may not be able to get in touch--I'm out of the house and running like crazy!! So much Christmas Shopping and so little time!! Trying to enjoy the fact that I finally feel like myself again and can drive, cook, clean, hug, do laundry, take a shower without needing a nap and stay up past midnight. Life is good and I'm planning on living it up until the chemo makes me stop. Hug your friends and enjoy the fact that you can stress out about Christmas--Life is a precious gift and hopefully you can enjoy it without needing a crisis in your life to remind you--use my crisis and skip that step entirely!! Love you all--Jenifer

Wednesday, November 21, 2007

Decision Dilemnas

Somehow I haven't had the nerve to blog lately--either that, or I've been trying to live somewhat of a normal life and by the end of the day there is no energy left to do anything but sleep. Okay, the reality is somewhere between the two excuses and four weeks post surgery I am still wondering what the next step is in dealing with my specific cancer perameters.

Originally we talked about the cancer as this tiny "zit" (Ken's beautifully descriptive word not mine) that maybe we were attacking with the bazooka guns, then after much conversation and research with real breast cancer survivors and Dr's and books and educational materials we came to accept that even a small "zit" of cancer is unpredictable enough to treat as a serious illness. Surgery came and went and now as the incisions are healing and energy is returning the long term reality of dealing with my cancer variables has hit. I have variable which seem to place me directly in the middle of not knowing for sure what the best plan of attack is, but here are the details for you to analyze.

So here are the facts as we knew them post biopsy--1.1mm invasive ductal Carcinoma and Ductal Carinoma in Situ with Cancerization of Lobules, Estrogen receptor positive Her2 negative.
In simplified terms...invasive means the cancer has spread into other breast tissue outside of the ducts, Cancer is early-stage 1 because of small size (good news)and only has 10% or less chance of recurrence. Estrogen receptor also indicates less chance of recurrence and the good news is that Tamoxifen can be taken for 5 years after treatment to block estrogen from promoting new cancer growth in the rest of the body. Her2 negative also points toward lower likelihood of recurrence. Recommendations for treatment: mastectomy of left cancerous breast, followed by radiation and tamoxifen. Double mastectomy chosen just to be on the safe side and not have a repeat case in later years (remember I do have lots of those....I AM YOUNG!!)


THe new and more extensive post Mastectomy and node biopsy reveals: all lymph nodes negative (great!)Estrogen receptor positive (tamoxifen treatment available-good) infiltrative ductal carcinoma with lobular features is 1.1cm (not detected on mammogram or MRI--not so good) cells are moderately differentiated( not so good), margins are not clear (radiation necessary on left breast only) Her 2 status is positive (not so good).

Consultations with surgeons and oncologist suggest that the larger tumor and Her2 status plus the moderately differentiated cells plus my young age are tipping the scale toward chemo--and several types of chemo are offered to choose from. Then one more factor puts us back on the fence--Her2 status is tested with a "fish" test (more sophisticated, more detailed) and Her2 status is bumped back to negative. So that makes the chemo my choice--benefits of having chemo are not know for sure--neither are benefits/risks of skipping the chemo.

Is anyone else feeling confused right now??--I sure am!

Ken and I weigh all the offered chemo options: CMF course is once every 3 weeks--6 sessions--pros: hair thinning more likely than total hair loss, less nausea, Cons: menopause, fatigue. AC chemo is once every 3 weeks, only 4 sessions--pros: shorter, reduces risk 1-3% points more than CMF. Cons: total hair loss, small chance of permanent heart damage. After much debate we lean toward CMF course of chemo just as a precaution in case some undetectable cancer lurks somewhere in my body--remember I'm shooting to be a 50 year cancer survivor!

So we meet with surgeons to double check mastectomy healing and with the Oncologist to schedule....Plastic surgeon wants two more weeks to let scabs heal...Oncologist agrees to ten days--December 4th is the scheduled beginning of chemical torture (my description..not the Drs!) and the second round can be bumped by a day or two to let me have the second round the day after Christmas instead of just before. Everyone seems happy with the decision to move forward--the only test that isn't back is the ONCOType DS--some sophisticated way of looking at the cancer cells and predicting what the chances of recurrence will be. Discussion between the Drs at tumor board was that all the Onco Type tests that have come back up to this point always categorize the cancer as mid-grade ( medium risk of recurrence)...so everyone debates the worth of test vs cost ($3200) which is not always considered an eligible insurance cost--we opt to go ahead with the test and we all agree that if test comes back mid-grade on the lower end we can reevaluate chemo efficacy...if on the higher end of "mid-grade" we'll keep the chemo as scheduled.

So I'm busy mentally gearing myself up for the next step--calling fellow cancer warriors to see how their experiences have been...gathering info and processing. And today Ken calls from his in house call duty to say that the ONCO type test is back (30 minutes after the Oncology secretary calls me to say test isn't back...we'll talk on Monday) and for the first time we have a low score to present to the Oncology team--so here we go into the holiday weekend back at the beginning.....recovering from the original surgery--grateful we did both breasts at once (did I mention that the larger tumor increased my risk of recurrence on the other side to 30%?) knowing we need radiation for sure...but back on the fence about chemo. Have I mentioned that I'm happier when there is a plan????

So I'll end my confusion for the night with a list of the things I know I'm grateful for at the moment--inspite of the uncertainty of what to do next: caring, compassionate, knowledgeable healthcare providers that work as a team; warm cinnamon rolls brought by caring neighbors; phone calls of concern; emails and cards that keep proving (as ken says) that I'm the most popular person in the house (we can actually say the we get more personal correspondence than bills these days--silver lining!); Lots of hugs and kisses from my husband and kids; the ability to drive 70 mph on the freeway after 4 weeks of no driving; a walk through the neighborhood with a friend who listens while I talk and talk and talk; friends who get my kids off to school while I head to Dr. appts; friends who pick my kids up from school while I'm still at appointments; warm, yummy dinners that appear in the kitchen just in time for me to feed the family after waking up from my post-appointment naps; laundry that disappears from my laundry hampers and comes back washed, dried, and ready to put back in drawers; neighbors who help pull garbage cans out the curb and back to the house when all my able-bodied family members are at work and school; cute hats just in case I have to go bald; pints of haagen-das icecream to eat straight from the container for an afternoon snack with the kids; beautiful flowers and yummy edible fruit bouquets; lots and lots of chocolate; house elves that show up and put the house back together--or run the house for days without letting me lift a finger. The list could go on forever, but I think we all get the idea!! It's hard to feel sorry for myself for very long when I start counting my blessings and realizing what an amazing outpouring of love and support that our family is experiencing. And most of all thanks for your prayers--from all ages and every denomination your faith and prayers continue to lift and sustain our family. We love you and hope you all have as many blessings to count this Thanksgiving as we do!

Sunday, November 4, 2007

The reality rollercoaster

So I know that you all are thinking that I'm just this incredible hunk of strength and courage--at least all your cards are cheering me on and complimenting me on my ability to keep moving forward, but the real truth is that I have lots of moments where I am scared spit less to think about the reality of Cancer as part of my existence.

Hard to imagine that a mere month ago I was carefree and worry free (well, okay, I was stressing out about how to juggle all my commitments, plant my fall flowers and get dinner made all in one day). I was watching the trees turn fall colors and hoping that I could get myself organized enough to pull off a stamp class, do my volunteer stuff at the school and improve my bowling average only bowling on one league a week. Kids were healthy, Ken was healthy, employment stable, fridge stocked, everyone had clothes and shoes to wear....life seemed pretty good....even better, I was on track for having my own dentist and doctor appointments checked off the list of things to do for the year. I celebrated by 38th birthday on August 9th, I rode a 68 mile bike ride with Cathryn in June and felt great afterward, went to my first rock concert (BON JOVI ROCKS!) teeth are being aligned properly for ache less chewing and smiling and I'm thinking that I'm approaching the big 40 in reasonable physical and mental condition...and I'm sooo looking forward to Andria starting Kindergarten so that I can catch up on some of those projects that have been piling up for the last few years of raising kids.

And then my internist suggested that I get a mammogram just to check things out even though she was sure it would be nothing.

One little statement that gave me a serious paradigm shift. For the first few appointments it was easy to think this was all just a little bump in the road... I did afterall ride in the Josie memorial Ride the day after I had the biopsy done...life was moving forward with just a little nagging thought that something might be wrong. But I'm still not sure that I really considered that I might have Cancer--and I certainly did no research on the possiblities. So when that phone call came that sent me straight to the couch in tears....and then to the office with the door closed to call Ken and MaurLo to start spreading the word--that was the moment I first considered that I wouldn't be around to be old enough to drive my kids crazy at the thought that I might live forever!

Even two weeks later I am not sure that I can think in termsof my own mortality because I want to be around for all the little moments between the bigger events of high school graduations, college graduations, marriages, birth of grandchildren, growing old with Ken.......I can't even bear the sadness when I find a picture drawn by Andria before I leave for the hospital of a mom and a little girl--both with tears dripping off their faces, or the fear in Andria's face when she comes to the hospital thinking that I might not be the same Mom she saw leave for the hospital. Or the cute eyes of Rachel as she gives me a tummy hug and asks if I'm feeling okay and her eyes on my face as I'm blogging to see if the tears are flowing or if I'm handling the emotion okay for the moment. Ryan is constantly hugging me and checking to see if I need help or if I'm doing okay...and Cathryn is the always observant child that I can't hide my sadness or concerns from--so she's always trying to keep everyone comforted and busy when my tears are upsetting the little ones. It's too much for a Mom to watch her kids hurt..especially when you know they know what it feels like to lose someone they love. So because my kids don't deserve to have another heart ache, I will choose the most drastic medical options for improving the odds that I will be around to grow old and drive them crazy.

Even with that resolve--I have moments when I fall apart--like the moment when my doctor mentions the word Chemotherapy and I realize that this Cancer thing is more serious than the 1mm "zit" (Ken's descriptive word) that is putting my life into a tailspin for a season. Or the moment I see new bruising and swelling after my drains come out and I panic and think that my skin is dying or an infection has started (luckily Ken has connections that let me see the doctors after clinic hours). Or the moment I have to tell my kids that the hope we had of avoiding Chemo is no longer a reality....and that yes, there is a possibility that my hair may fall out and that our hope of a "season" with cancer has now turned into more like a yearlong process. Or the moment a friend walks into the room with a bottle of lotion and offers to rub my feet to help me relax and take a nap and I realize how profoundly I miss having my Mom around to take care of me and my family. Dogfood!! This really stinks!

Then I look at my kids and Ken and realize how lucky I am that I had that random Mammogram, that they saw something they were concerned enough with to reqest a biopsy, that those guide wires were in the right spot to catch a 1 mm spot of invasive cancer that suggested I should have a mastectomy, that I had a mastectomy not a lumpectomy and that it turned up another 1.1cm spot of invasive cancer that they couldn't even see on the MRI, that I took off both breasts in one shot because the likelihood of reccurence with the larger cancer jumps to 30% and the aggressive behavior of the cancer is scarier because the mastectomy comes back Her2neu positive insteaad of Her2neu negative like the biopsy. How did I get so lucky as to have an random early detection when so many women out there are finding their own lumps and being diagnosed at a much later and more difficult time to be treated????

So for the moment the tears of fear are being replaced by tears of gratitude and a resolve to make the most of every minute that I have been given--As Dr. Neumayer says I just got a second chance at life! So like that county music song "Live like you Are dying"--I'm not planning on riding any steel bulls or going skydiving, but I do plan on 'loving deeper, speaking sweeter' and enjoying each day just a bit more than I have in the past. Tears and joy all in one bundle--this experience with cancer will be quite the ride--I have always been a fan of big rollercoasters...but the amusement park variety not the emotional variety!!!

First day flying solo

Somehow here we are almost 2 weeks post surgery. Somehow the days fly past even without my normal jam packed schedule to fill the hours. Now the hours fly by as I just try to do the very basics of getting through the day.

Saturday was my first day flying solo as the Mom and general manager of the family. Solo in this context does not mean that I did this without the incredible help of all four children, it simply means that I had no adult supervision (as in they do the work...I rest) to get me through the day. Ken was called in to do a long heart case and I felt good enough to contemplate making breakfast (can't say no to that dark haired girl that carefully cuddles up to me, bats her eyelashes and asks for pancakes).

So the adventure of the day begins when I realize that the pancake batter is in a cupboard that I can't reach as is the griddle...so Ryan is recruited to be my arms...then the gallon of milk must be retrieved from the fridge by Cathryn and once the batter is mixed (I did actually dump the mix in and crack the eggs) the bowl is too heavy so Cathryn is enlisted to pour the pancakes...my job is to hand her the plastic pancake turner. Kids want homemade syrup so Ryan has to reach the corn syrup, maple flavoring, and carry the pan to the stove once it is full of water and sugar etc....but I did turn on the stove! So I guess the question is.....did that really count as me making breakfast???? I did at least have the energy to eat the pancakes served up by Cathryn standing in my usual spot on the inside of the bar as I sat in the "kids" chairs.

After such a nourishing breakfast I did of course manage to muster enough energy to assign chores...a normal part of life that the kids have been happy to miss! Each kid went to clean up their zone ( do I have to mention that the cleaning ladies were here on Wednesday...and Aunt Treasa was here until Yesterday keeping everything together??) and find the floors of their bedrooms, practice the piano and do a job in the yard. Triumphs of the chore time were that we found a shelf in Rachel's closet where Andria could stash her treasures because Rachel found a few treasures from 2nd and 3rd grade that she could finally part with, and Cathryn and Ryan did a fabulous job of cleaning dead plants out of the pots and flower beds in the back yard. I did a fabulous job of supervising and keeping everyone on task...and then declared chores done and friend time, I mean nap time, as the order of the afternoon.

Everyone found some social activity to engage them but poor Andria who elected to keep me company on the premise that I would try again to find her a friend in "half an hour". I vaguely remember her asking me very quietly a few times if it was a "half an hour yet???" but somehow I managed to get just a few more minutes of rest before I was ready to wake up--a full three hours later! Andria kept me company the whole time reading herself stories and writing/drawing on her little portable desk in my room--is she amazing or what! Apparently while I was out for the count the phone rang (next to my head) and a neighbor, Elizabeth, called to see if there was anything we needed from Costco. Luckily the home supervisor for the afternoon, Ryan, remembered that we were really in need of some milk and put the proper order in. So I woke up to the voice of Elizabeth delivering milk and asking if Andria wanted to come over and play (finally...the half an hour is up!!). Whew!! This is quite a job adjusting back to the rigors of everyday life!