Day 1136*

Maple leaf

*since diagnosis.
My last appointment at M. D. Anderson was in mid-November.  I got a great report - no sign of cancer for the second year.  And I do not have to be seen again by my oncologist until November of 2014.  The bad news was that my oncologist, Dr. M., was leaving to take a research position in Chicago.  Selfishly, I don't want her to go.  I credit her with saving my life!  I want to keep her around to keep the demons away!  But, she explained that it was a good move for her family and that she originally set out to be in research.  So, we hugged, I thanked her again and Dave and I wished her well.  It won't be the same, you know, going back to MDA for visits now.  But, I guess, all good things must come to an end. 
Since June of this year, I finally starting feeling more like myself.  Two full years from the date of my last chemo, my body shook off the residual effects and I began to recognize the old me.  Sometimes the most mundane things become beautiful - like realizing you just walked every aisle of the grocery store, checked out, loaded and unloaded and put away the groceries AND you're not gasping for breath or anxiously looking for a place to sit before you fall. 
There were days I thought I'd never, ever get over the toxic effects of chemo.  But now, two and a half years later, I am pretty much back to my pre-cancer self.   I suffer from lymphedema in my left arm which is aided by therapy (massage) and a compression sleeve.  I still have neuropathy in all but my big toes on both feet.  The lovely side effects of Tamoxifen are still weight gain, acne, joint pain and hot flashes.  But when I asked Dr. M if we could cut this lovely dance with the estrogen blocker short - say, about NOW - her response was immediate:  "Hell no!"  So, three more years of Tamoxifen before I'm home free. 
Psychologically, the effects of cancer and its treatment have been more substantial than I imagined they might be.  Not only did I suffer the effects of "chemo brain" (loss of concentration, a "dulling" of the senses, the inability to multi-task, and loss of motivation), I can only describe the rest of it as having a broken compass.  I have been completely without direction.  Now, the fog has lifted, I am able to be excited about projects and the future again and I am starting to sense the wind in my sails again. 
I have no idea what the future holds -- but neither does anyone else.  No one is guaranteed tomorrow or next week, even.  The upside to all of this experience is that it's sweetened every good thing in life and reduced the chaff to dust.  My days are numbered but they always have been -- cancer just makes you understand the significance of every good day left.

Molly & Me

Day 1027 ... Keepin' on.

Me & Grand Girl, Molly

Hello campers! It seems I am visiting here now about as often as I do my docs at MDA! Truth is, I'm feeling so much better that, for the most part I consider this whole cancer episode D.O.N.E! The only time I really give it much thought is when I cross the elevator threshold downtown in the Mays building of M. D. Anderson. (OR when I am cursing the effects of my nemesis "savior", Tamoxifen.")

This past summer, my surgery anniversaries came and went: June 28 and July 8. Next month, my third surgery anniversary, Oct. 14, is coming up. Two years and I still have tenderness, soreness sometimes and weird, achy numbness although that is much improved. I need to see the physical therapist soon to be fitted for a lymphedema sleeve. I avoided it early on and since I got conflicting information from my doctors, I chose to believe the one that said it wasn't necessary. Turns out .. it is.

I can honestly say that I didn't feel fully free of the chemo until June of this year. Sure, my hair came back, my toenails stopped turning black and turning loose (only three, not all), my neuropathy improved somewhat, but there was this ongoing feeling of unwellness that stuck much longer than I anticipated. My nurse practictioner said last week that window of time is completely "normal".

Normal - it's all a "new" normal.

It's normal to be anxious prior to any kind of visit now. Now, when all the "bad" stuff is behind me, my heart rate jumps when I'm in a closed room with an exam table, posters of human anatomy and a clean folded gown staring me down. I had my "Well Woman" exam last week at the Cancer Prevention Center at MDA. Because of my required Tamoxifen (which is known to provide an elevated risk of uterine cancer) and my being a DES daughter (a drug given to women in the 50's to prevent miscarriage), my medical team is keeping a close watch on the health of all my girl parts.

Last time, the lining of my uterus was thicker than it should have been, given my new, post-menopausal state. It was apparently cause for alarm and all the bells and whistles went off. Thankfully, all of the other tests came back within normal perameters and the sirens finally stopped blaring. I have every confidence that this test will pass as "healthy" too. I'm not borrowing trouble until it's packed its bag and is knocking on my door.

That doesn't mean I didn't get a little nervous .. and my heart rate was questioned by two nurses and my NP. During the visit it came down from 103 to 92 beats per minute and I explained it away with the long walk in and the Starbucks coffee I downed just before checking in.

So now we wait for the "all clear down below" letter. And we count the days and calculate how many pounds we can legitimately lose (or not gain) until my Oncology visit in November. Bloodwork, bone scan, Mammo and Ultrasound. I'd love to hear my Oncologist say that I can safely stop the Tamoxifen but I doubt she'll cave to my whining about bone aches, ridiculous weight gain (on baked chicken & salad, gimme a break!), cramps all over my body, swelling, pimples, dry skin, (heard enough?). I have three more years to complete the recommended round of five.

Party. November. 2016. Be there.

903 Days since diagnosis

Just one of the wildflowers I've enjoyed this spring

Two years, five months and twenty one days ago I heard, "You have a cancer, honey."  It wasn't a big shock because I'd already heard the word "malignant" from my primary care physician's nurse who got the report before I heard from the doctor who performed my biopsy.

The world "malignant" made me gasp, literally.  I don't know why, my intuition was telling me for months that there was something desperately wrong even though the "wrongness" was subtle and I easily convinced myself that it might just be a) menopause or b) getting older. 

But that's all old news.  Today I have more good days than bad.  Today I have hair that actually gets messy on a windy day.  I can't tell you how much I love having messy hair on a windy day.  But there are reminders that I've had breast cancer, and in an effort to continue to pass on information about this disease and the consequences of treatment, I'll tell you this:

Tamoxifen sucks.

I can't lose weight and it's a victory to just not gain weight.  I have terrible cramps in my feet, legs, hands, armpits (no kidding) and I even had one in my jaw when I yawned recently.  I'm not sure why I'm having so much trouble with this but a quick, disturbing home remedy is yellow mustard.  When the cramps are more than a passing irritation, when they're so bad I can't sleep, I get up and have a big ole heapin' helpin' of yellow mustard.  It's not for the faint of heart but when your feet want to curl up like pringle potato chips, you'll try anything. 

My nails are still brittle and slow growing.  I'm not sure if this is a residual effect of chemo or menopause but I just keep them clipped short and go with the flow. 

My hearing has improved from what it was while on chemo.  But don't get excited, my hearing sucked before chemo!  During chemo, I couldn't tell the shower was running unless I looked.  Now, while showering, it's nice to hear the water.  I still can't function in society without my hearing aids .. but you don't know what you miss till it's gone and having to LOOK at the shower to see if it's on is a little heartbreaking.  

I am experiencing swelling in my left leg.  My oncologist thinks it might be a tamoxifen issue or it could be that I have developed a bit of lymphedema on my left side all the way down my leg.  I've had two ultrasounds in the last six months to eliminate the possibility of blood clots (a prominent side effect of Tamoxifen) and so far, so good.  I also feel swollen and "numb" on my left side from my shoulder blade to my waist from time to time.  Usually it's after I've probably done too much, like lifting 50 lbs. of chicken feed or carrying in too many groceries.  I'm going to check into getting a lymphedema compression sleeve to see if that will relieve the discomfort. There's no way to predict lymphodema or cure it when it does happen but many breast cancer patients experience it due to the removal of lymph glands in the surgical process.  My surgeon removed 26.  I've only met one other breast cancer sister who had more removed and she lost 29.

Fatigue is still my nemesis but every week that goes by I realize I am walking farther, doing more and feeling more like myself before breast cancer.  I still get frustrated because there's so much I want to do, need to do, and I have to "budget" my energy.  For example, if I have appointments or errands to run on Wednesday, I know that on Thursday, I'm going to have to take it easy.  If I clean house in the morning, in the afternoon I might need a nap.  If I do laundry all day on Saturday, on Sunday I'll be watching old westerns on TV most of the day.  I don't like it.  I used to be able to clean my house, do the laundry, wash my truck and mow the yard and still have the energy to cook dinner for friends.  Those days appear to be over.  

But it's not all bad.  I have a deeper appreciation for everything.  Walking outside and hearing the birds is a small thing but it's such a precious thing.  Noticing the sky changes from winter to spring to summer not only marks the passing of time but the progression of sick to well again. 

I asked my Dr. M the day we first talked about my regime of treatment how long I would be sick.  She told me a year.  I know that having the MRSA infection, subsequent surgery and wound vac added months to my recovery, but even so "a year" was an optimistic prediction.  June 1 will mark my two year anniversary of my last FAC chemo.  It's been a long haul.

Now I am much more sensitive to others that are facing this and other cancers in their families and we all know far too many who have this disease.   It's life changing in so many ways that are unpredictable.  Financially, emotionally, certainly physically --- and spiritually.   I never asked "why me" because I'd much rather it be me than one of my children or grand children.  But I can't say I haven't railed against God when I wasn't instantly better.  Patience has never been one of my virtues .. 

So, in a little more than a week I will be up at the crack of dawn and speeding, with Dave, towards Houston and M. D. Anderson.  It's time for semi-annual scans, blood work and a visit with my oncologist.  I don't dread it but it makes me a little nervous.  "Scanxiety" it's called.  And apparently most cancer patients experience it.  Once you've walked through the fire of chemo, surgery and radiation and all the extracurricular activities associated with cancer treatment, you hardly want to repeat that journey.  But, at least, if I do have a recurrence I know that I have God and all of you rooting for me.  And what very good cheerleaders you all are.  Rah! Rah!

Choose to be happy.  That's really all there is to it.

Love, 

Darlene

806 days from my diagnosis ..

My hair!
I think I've had three haircuts at this point,
but I'm trying "grow out".  (The things we
do for our HUSBANDS!)

 Well, hello there!  It's been six months since I've recorded anything here.  Truthfully, I've been so focused on getting my life back that all this cancer business has just been shoved to the back burner!

12.27.12
Ashley's 29th Birthday!

First there were the holidays and then birthdays in December and January with my kids.  I am so grateful to be HERE and able to celebrate all these precious days with them and all my family!

1.5.13
Jared's 30th Birthday!

But, just to catch you up, and for all those breast cancer patients that may have landed here seeking information, here's what's happening lately:

I had checkup appointments in August with my oncologist.  The Femara (estrogen blocker) she put me on in May was causing significant issues.  My bones ached so badly at night I couldn't sleep and I couldn't walk more than 50 yards without tremendous bone pain.  It was just not acceptable.  So, even with the risks of Tamoxifen (blood clots, uterine cancer), at least I can have some quality of life while taking it.  In an effort to alleviate the swelling issues I was having with Tamoxifen before, she also added spirolactone, another diuretic, to my pharmacological soup.

She said my blood work looked good and I was scheduled for a mammogram and breast ultrasound in November.

Then, in September, my plastic surgeon called and asked me to move up my reconstructive surgery (on my healthy breast to reduce and lift).  So, on the 12th of September I had all my pre-op stuff done and had surgery that afternoon.  It was the easiest surgery I have ever had in my life.  I was in pain upon arrival in recovery and that was my only moment of discomfort.  I had one pain pill in the aftermath (for the ride home the next day) .. and that was it.  Easy peasy.  And, if I do say so myself, my newly renovated boobie is pretty damn cute.

Let me address something here that's very personal.  (Geez .. after all I've shared THAT must make you nervous!)  Well, here goes.  I had a real problem accepting the generosity of reconstructive surgery.  After all .. my cancer was gone, and despite my not-so-pretty scarring on the cancer breast, I never, ever expected to have the benefit of making my healthy breast match my now much smaller cancer boobie.  Since I am a medicaid patient (and I still have lots of guilt about that), it seemed like an abuse of the system to just "fix" my healthy breast.  And when I expressed those concerns to Dr. C., here is what she said:

"We are not just here to remove your cancer.  We are here to restore you to a place in time before you knew you had cancer.  Your breasts are significantly different now in size and weight and, as you get older, the weight of the right one will cause posture and spine issues.  It's better to correct that issue now, as well as give you the added benefit of a better appearance .. which will only add to your quality of life in the years to come as a breast cancer survivor."

I almost cried.  I want to add here that if you are a breast cancer patient, do not expect any automatic referrals to reconstructive surgery at any point.  It was only via the care and compassion of my oncologist that I was even informed a reduction and lift to my healthy breast was a option.  You'd have thought this would have come via my surgeon under whose care I remained from 6.28.11 to 12.21.11.  But no.

So if you have a question about possible reconstructive surgery - even on your healthy breast - ASK QUESTIONS of ALL your doctors.  Okay, putting away the soapbox now.

My plastic surgeon released me in early December and we were both very happy with the results of her work!  Later in December I had my mammogram and ultrasound.  It was originally scheduled for November but I wasn't healed enough for all that "attention", so we pushed it back.

Both reports came back clean!  My oncologist was happy with everything but my weight.  I was still carrying around the 11 lbs. I gained on Femara.  And, to be truthful, since my taste buds came back and everything tasted so good, and because I was rewarding myself for being such an awesome survivor, I was eating everything and anything I wanted.  Not good.

January 1st I started low carb dieting and to date, I 've lost 7 lbs.  If I could get myself on the treadmill a little more faithfully, I'd lose more quickly but my energy level remains low.  I have good days and bad days.  On a good day I can do pretty much anything I want to.  On a bad day, it wears me out to make the bed.  I am still short of breath and require lots of breaks in between my chores.  It can be discouraging.

So, that's everything that's happened in the last six months.  I don't have another doctor appointment until May.  Six whole months of NO DOCTORS.  I can't tell you how liberating that is.  Then, in May, I have to repeat all my bloodwork and have a full ct scan to be sure that the "spots" on my lungs, kidneys, liver and thyroid remain stable.

It seems every week I hear of another family that is being touched by cancer.  It's heartbreaking, especially, when the patient is a child.  While I am grateful for all that I learned about myself during treatment and for all the love and concern shown to me while I was sick, cancer is a demon.  It changes you forever.