Saturday, December 28, 2013

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

Monday, September 9, 2013

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.

Thursday, May 9, 2013

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

Friday, February 1, 2013

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.

Sunday, August 5, 2012

I can't think of a snappy title .. so .. HERE:


Wow.  I can't believe it's been more than two months since I've visited  you here.  I have to admit that I drag my feet about coming back to the Herschel page because it's an admission that I've been sick.  And frankly, I just want to put it all behind me.

My daughter argues that I am so much more than a cancer survivor.  That I shouldn't let that experience or label define me.  To some degree she is right.  But I also know that cancer has also been another harsh life experience that reshapes your perspective, your hopes and all that you hold dear.

As for the biologic responses to it at this stage, there's not a lot going on.  My incision continues to heal and, in the process, more and more tension is created pulling me to the left.  It's neither pretty or comfortable, but it is what it is.  I sometimes wish I'd just cut the damn thing off.

My doctor thought my swelling issues in April and May were due to Tamoxifen, so she changed me to another estrogen blocker, Femara.  I also take Lasix every day.  If I skip a day, my left leg swells significantly.  Who knows why?  The removal of 26 lymph nodes surely affects SOMETHING, but I would have thought the swelling response would have been in my left ARM, not my leg.

The Femara has caused me to have joint pain, muscle cramps and hot flashes.  But it supposedly doesn't have the threat of blood clot or uterine cancer like Tamoxifen.  And, speaking of that, I'm having another uterine biopsy tomorrow.  I'd rather take a whipping.

Friends who have had them thought them to be no big deal.  For me, it's right up there with the most unpleasant things they've done to me in the last two years.  I'm not sure why it hurts so badly, but I plan to take a Vicodin prior to my appointment tomorrow morning so, hopefully, it's not quite as bad as last time.

The rebel side of me thought about cancelling the appointment.  After all, there's no symptoms or evidence of uterine cancer.  The lining of my uterus was slightly thicker than it should be and, because I am a DES daughter and my chances of gynocological cancers significantly higher than the general population, my medical team is covering all bases.   Mostly I am grateful.  Some days I wish they would pick on someone else!

My energy level is almost back-to-normal.  When I complain of being inadequate and unable to complete everything on my "to do list", Dave reminds me that I am fifty five .. and not everything is the fault of cancer. He also suggests that my "to do list" could do with some reduction. Eh. Whatever.

When I do something like walk all the way through Sam's, help Dave through check out, help load the car and unload it when we're home, put away the groceries and fix dinner, I silently applaud myself remembering last year when I couldn't even make my own sandwich without a chair in the kitchen to catch me when I was about to fall.  I feel like a superhero.

I'm not eating as well as I should.  Well.  Let me rephrase that:  I am eating FABULOUSLY.  Everything tastes so good and I am so hungry (Damn you, Femara) and, I have to admit, I am rewarding myself for being such an awesome cancer warrior.  At some point, like last week, I need to get a grip, lighten up, eat more responsibly and get my large butt back on the treadmill.

My hair is growing like a weed.  It's thicker and less gray than before.  I still have curls but they are fading.  As much as I love me in short hair, I am surrounded by people who love me with long hair.  Oh, why do I have to be such a people pleaser??? So I am trying to grow out.  It's one awkward stage after another!  But I am not complaining.  I'm so grateful for hair, eyebrows and eyelashes that I will never ever complain about bad hair days, waxing ouches or crappy mascara EVER again.

So let's address the vanity issue.  You might recall that my mother pointed out (at a REALLY bad time) last summer that she didn't raise me to be vain.  It's true.  All my life I've been told how pretty I was, how outstanding my eyes were.  My inner response to this was a) I didn't do anything to look like this, it was just God's grace and good genes.  And besides, mama always said, "pretty is as pretty does" so the outward thing was just discounted in my mind. And b) my eyes didn't look any different to me than anyone elses!

I've always wanted to age gracefully.  Oh sure, if I had tons of money, I might do some tweaking and fine tuning.  But I think some women become a characture of themselves.  Some of the "anti-aging" camoflauge isn't really all that effective.  So I intend to go with the flow.  The thing is .. the past couple of years have turned that flow into class five rapids!  My mirror tells me it's been a rough patch, as if I didn't know.  So instead of looking for beauty in my mirror, I look for it in the eyes of husband, my children and my grandbabies who love me regardless of the wrinkles, sagging everything and weight gain.

In September I am scheduled for reconstructive surgery.  It's a decision that I have wrestled with for months.  First, I had to give myself permission to WANT boobs that were the same size and latitude.  Truth be told, I'm still working on that.  But my oncologist and the plastic surgeon both say it's something I should do both for cosmetic reasons and for the health of my spine and posture.  Peach versus grapefruit, in other analogies.  As I get older, apparently the disparity between Fred and Ethel could be problematic.  So.  I get a new, redesigned and realigned right boob in September.

There is some fear which is new to me.  For some odd reason, I am never nervous when I have surgery.  Never.  I doubt it's bravery as much as some sick sense of adventure.  I'm fascinated by the whole experience.  I wanted to be awake for my second c-section AND I wanted to watch.  When I woke up in recovery after the second breast surgery last summer I was saying, "Oh man! I missed the party.  I wanted to watch."  Yes, weird, I know.

But this time .. not so tickled about those shiny lights and that fun injection into my IV.  Having had the MRSA experience, and knowing how rampant it seems to be in hospitals today, it is my chief, primary and biggest concern.  I am no longer a "carrier" meaning my last MRSA swab came back clear.  It's no longer a part of the flora and fauna that lives in or on me.  I'm clean.  I want to stay that way.  All I can do is pray that this surgical experience doesn't require an additional six months of treatment.

So.  That's it.  That's what's going on with me.  Meanwhile, I have a dear friend battling long and hard with skin cancer.  I have another who has been diagnosed with throat cancer and a childhood girlfriend is exactly where I was last summer with breast cancer.  A cousin's husband just had surgery for thyroid cancer.  One friend's husband, who was diagnosed with liver cancer just prior to my own diagnosis with breast cancer, continues to have chemo treatments but is doing well.  These days, it's almost miraculous NOT to have cancer.  The good news is that today's treatments are effective but I also put a big premium on prayer.  Cancer isn't Charlie Sheen.  It's not winning.  God is.  Woot!

Eat your veggies, take your vitamins and feel your boobies.

Love,

Me
(And even though Google thinks David posted this - you and I know it was DARLENE.) 
[Smile.}

Saturday, June 2, 2012

Just checking in ..



Yesterday was an important anniversary for me.  It was one year ago yesterday that I had my final FAC treatment at MDA and rang the chemo bell!  It's hard to believe it's only been a year, and yet, the remainder of the year following chemo seemed to crawl by.  Though I was finished with six months of chemo, I still had three surgeries and six weeks of radiation therapy ahead of me.  Still, I knew that getting the yucky chemo behind me was a major accomplishment and I was a very happy girl.

So, here I am almost eight months past my last (and most extensive surgery) and my incision is still healing and changing. Due to the significant loss of tissue, it's not healing comfortably and there is a lot of "draw" and tension.  The plastic surgeon told me that there's nothing she can do for me regarding that at this point as I am too "healed".  I'm not concerned about the cosmetic issue, frankly, it looks better than I thought it would.  But it's uncomfortable and I have pain everyday.  It's not unbearable, just there.  My arm is still stiff and sore and I have numbness and pain (yes, together) in my armpit and behind my breast in my shoulder blade area.  Please note that I am not complaining about ANY of these issues.  I'm grateful to be here and be cancer-free, but I am noting all this for any of you who might be facing your own journey with breast cancer.  

Investigate "Sentinel Node Dissection" versus Axillary.  And ask LOTS of questions PRIOR to surgery about the route to take AFTER surgery.  Don't expect your surgeon to automatically offer you any options. My surgeon never indicated that I should see plastics after my third surgery.  In fact, it was my oncologist who suggested it to reduce the size and volume of my healthy breast to match my previously cancerous one.  I hadn't even considered it was an option.  I thought I would just be lop-sided the rest of my life.

Turns out that plastics not only reconstructs breasts after mastectomies or lumpectomies, they also provide surgery to give symmetry and balance to what's left.  Hm. How about that?  So now I am considering a possible breast reduction on "Ethel" in the fall.  I have never been afraid to have surgery .. but I can tell you that after my experience with MRSA, it's something I am giving great thought to.  And I go back and forth on the issue.  Is it silly and vain to want my breasts to be of relatively equal size and latitudes?  Poor Ethel is hovering down around the equator while chipper (though scarred) Fred is perky and firm.  Yes, I said "firm".  Seems that is a side effect of radiation. At first I thought it was cool to have at least one seventeen year old breast (at 54!) but as time has passed I realize that the firmness is tight and lumpy.  Sometimes my ribs are so sore they feel bruised.  Everything seems to have all grown together on that side. 

Okay, now I sound like I am whining.  Maybe I am.  While it's true that I am "cancer free" (and in the back of my mind I think "but for how long?") and have achieved a great deal of my stamina back, there are still days when I am so weak and tired it feels like I'm still a chemo head.  And speaking of chemo head - I still am one.  It surprises me still that my brain just doesn't "fire" like it used to.  In my pre-cancer days I could multi-task like a ninja.  Now I have trouble focusing on just ONE task and my ability to follow thru to completion has been woefully diminished.  In other words, some days .. I suck.  I get names wrong and can't remember things, lose things .. and it's not just 'aging'.  It's more DEVIOUS than just aging.

I continue to have at LEAST one doctor's appointment a month.  After having as many as six or ten in a month I shouldn't be too unhappy about that, right?  Well, here's the deal:  I consider myself "well" .. and apart from going to MDA to see my friends, I could really just leave it all behind. It's just a reminder that my life is not the same and will never be the same.  That's not to say it can't be GOOD .. it's just .. NOT THE SAME.

Tonight at midnight I'm on a moratorium of eating solids.  Only clear broth, Sprite and green or yellow Jello.  (WHO EATS GREEN OR YELLOW JELLO?)  Plus that huge jug of "pipe cleaner" that I have to drink.  We're headed to Houston tomorrow for an overnight and a lovely inspection of my intestines on Monday.  After that, I can't imagine what they will scan, x-ray, probe or investigate.  My intestines are about the last unexplored region of Planet Darlene.

And, if it was up to me, I'd just as soon they stayed that way ... 

Friday, May 4, 2012

Good news and ...

Good news, so far anyway! My semi-annual date with the CT scan machine went swimmingly. Except for the HUGE needle and the BURNING contrast (did they pumped too fast?) it was the usual piece of cake.

The day after my scan my oncologist told me it was all clear but that, due to the spots on my lungs, they would continue to check me for two years. Since I didn't have barium, I guess I can't complain too much about that needle issue ...

I did get a bit of a butt chewing though. Dr. M. was not at all pleased that my left leg has been swollen for two weeks and I didn't call. I told her I was too busy being well to be sick .. she wasn't amused. "You do realize that Tamoxifen can cause blood clots, right?" Hm. Well. I didn't really think of that, doc.

After she examined me and teased me about being concerned about my chin hair when my leg is twice the size it should be ... (Hey. It's all about priorities!), she took me off Tamoxifen. Now I am taking Femara. I haven't even bothered to look up THOSE side effects. Just surprise me.

She also gave me a diuretic for the swelling and marched me off to imaging for an ultrasound on both legs. Both are swollen, but the left is significantly bigger. Still waiting on those results but meanwhile I checked my MDA appointment schedule yesterday and they have me down for another ultrasound on MONDAY. Is that duplicate appointment? An error? Or do I really have to go back get gelled and mushed again? Until I get a return phone call it's anybody's guess.

If I have a blood clot, I'm gonna be so pissed! I don't have time to be SICK!!!

On a lighter note, I did enjoy a new experience at MDA this week. I had a consult with plastics to discuss possible reconstructive surgery. Actually, a reduction in my healthy breast to make it "match" my tiny, tanned and scarred one. One is a DD .. the other, after three surgeries is about a C. I call them Fred and Ethel. Ethel needs a lift.

It wasn't even something that was on my radar until both my oncologist and surgeon mentioned it to me. And after my MRSA experience, I am not at all sure that it's something I want to do. But I was willing to hear them out. The nurse did all the usual checking in procedures and then offered me something called "photo panties". Uhm. What?

You can imagine the fun Dave and I had with that line. Anyway, they're hideous, these "photo panties". It seems that prior to any reconstructive surgical procedures you have a photo session (oh joy) so that the docs can determine where to take fat (back, belly or butt. Seriously.) to reconstruct breasts from you own tissue. Thankfully, since I was taking away and not adding .. I skipped the photo session.

What a waste of good photo panties!

Next up (unless we do a redo on the ultrasound) is my appointment for a colonoscopy on June 4. Man, the fun never stops! (Maybe I'll wear my photo panties and surprise the doctor) ...


Monday, April 30, 2012

It's that time again ..



So, tomorrow I have my routine CT scan prior to my routine oncology checkup and routine blood work.  Here's hoping it's all ROUTINE.  Every time I have a scan or a test or a biopsy, I worry about what they will find.   And now I know that is pretty much SOP for any cancer survivor.

The trick is not to get it get the best of you.

Some rather strange things have been happening.  Last week I lost two toenails.  They were the ones that were ugly gray a while back.  I guess it's death by chemo but it's 11 months since my last treatment so you'd think they could have hung on.  (At least through sandal season .. right?)  There is nothing uglier than a toe without a nail.  

The other thing is that my left leg has been swollen for two weeks.  Putting my feet up doesn't relieve it and it's been almost painful at times.  Not sure what's causing it but I hope it's not the first sign of lymphedema.  Wouldn't that start in my surgical arm anyway?  More questions for the oncologist.  I have a fistful.

I'm gaining weight like a sumo wrestler despite my increased activity level ... and I swear I am NOT eating junk food!  No sodas, no ice cream, no pie, no cookies.  It's very discouraging but I suspect it's the Tamoxiphen.  And I've got to have that for at least seven more months before I switch to a different estrogen blocker. 

And for those of you who are interested in my awesome experience at the Casting For Recovery retreat, you can check out my blog entry here.  I've pretty much switched my attention away from AWH and back to DRH.  I'll still come here to report anything newsworthy (like my suicidal toe nails) but mostly I am too busy being in love with my piece of heaven here on The Dirt Road.

I hope all of you are well and finding joy in your piece of outside.

Love from the woods,

Darlene

Monday, April 9, 2012

Resurrection



It's Easter Sunday.  I don't even remember what we did last Easter.  Probably, I was on the couch and Dave watched me sleep and Mom tried to find something I would eat.   I had my second FAC chemo cocktail on April 20th, so by the 24th I was probably laying pretty low.

This year I am celebrating my own resurrection of sorts.  Every day I am working in the yard a little trying to build up my strength and regain territory lost to weeds and high grass and a year of neglect.  

This morning I started our Easter dinner early and then went out to mow a little, pick up a few limbs, start a burn pile and rest a lot in between.

Three things gave me so much joy - well, more than that, but these were the TOP three:  A wren is building a nest in one of my bird houses.  This makes me especially happy after losing a pair of chickadees and their eggs to a raccoon last week.

Some salvia that I planted two years ago survived neglect, gophers and the drought and are growing (with all the grass and weeds!) in one of my flower beds.

And in another, some tiny mouse ear hostas also are making a comeback despite being completely overgrown with weeds and having no TLC since I planted them two summers ago.

Like my salvias and my hostas and the wrens .. I'm coming back.

My last appointment at MDA was a two day affair.  On March 27th I had my first post surgical mammogram.  I wasn't thrilled about the idea of smashing my still healing tiny boob in the boobie blaster but it had to be done.  Thankfully, I had a gentle tech who understood my anxiety and, together, we got it done.  It was only slightly more uncomfortable than every other mammo I've had.

The following day my breast surgeon, Dr. B., released me from her care.  Part of me was sad about that.  I've enjoyed having her (and PA Erin, and Nurse Kelly) as part of my medical team.  But she assured me that it was a graduation of sorts and that (God forbid) if I ever needed her again, I knew where to find her.

My mammogram showed all the expected things, changes due to radiation and surgery, but no evidence of cancer.  I am NED - No Evidence of Cancer.   That's a pretty big deal!  Especially since the day after I was scheduled for a uterine biopsy which had me mildly rattled.  That, too, came back as no cause for concern but, due to not enough tissue for a proper evaluation, we're repeating it again in August.

Skin lesions that were tested early in March also came back as benign.

NED.

"No cause for concern."

Benign.

I think I will stop worrying now and get on with my life, my mowing, my raising of a few vegetables, my bird love, caterpillar adoration and life. 

Life as I knew it before.

Life as it was before Herschel.

I had to explain to some folks that being released from one doctor does not emancipate me from MDA entirely.  I still have regular appointments with my oncologist, my dermatologist and my nurse practitioner at the Cancer Prevention Center. 

I will still have regular CT scans and blood work and bone density scans and well woman exams, all in the name of keeping me healthy and free of cancer.

But the hard part is over.  

I will continue to update the AWH blog as appointments occur or symptoms arise but for the most part, I am returning to DRH for good.  It's where I belong .. and as you know .. no shoes are required.  Thanks for always being on this journey with me.

God bless!

All text & photographs on Dirt Road Heaven © by Darlene Meader Riggs, 2010

Tuesday, March 6, 2012

The Community

"The only good thing about having this disease is that it links us all together. Complete strangers will weep while reading your words (I know, because I did) and then pray for someone they have never met. It doesn’t matter that we don't know each other. I know the fear, the frustration and weariness you both feel.

My husband so surpassed my expectations, wishes and hopes in supporting me during my treatment. It made me sad to think that he had watched his own mother survive breast cancer for twenty years before she lost HER battle, and now he was having to watch me endure its costs. I imagine some of your wife's anger is because YOU are collateral damage in her fight with this demon. It’s bad enough to watch someone you love have cancer. It’s a whole other ballgame to have cancer and watch the person you love watch back. We can’t live without your love and support and we’d give anything – ANYTHING - to make it all go away.

Keep the faith. And above all else, for what it’s worth, ... you’re not alone."

These were the words I left as a comment on the blog of husband who is watching his wife battle with stage four breast cancer.  Blog For A Cure  is a forum of cancer patients and cancer survivors.  I've been lurking in the wings on this one since I found it almost a year ago.  The level of emotional support offered between strangers who have been diagnosed with the plethora of cancers is miraculous.  

In real life, not many can hear the dirty details of what cancer does to a body, or often what can be worse, what cancer TREATMENT does to a body.  But in this forum virtually anything goes.  No one judges, everyone understands, encourages and prays.  

I confessed to Dave that I had been going there frequently in the past few weeks to look up my two potential cancer addendums.  I wanted to see what experiences others had with diagnosis, treatment and recovery.  Thankfully, now my role can be that of support, prayer and encouragement because yesterday nearly all of my fears were dispelled.

My skin biopsy came back as a benign wart.  As gross as having a wart (or two) is .. it's a far more attractive diagnosis that I imagined I might get!  I'll have a date with the dermatologist soon to have them frozen off.   Mmmm. That might be a strange sensation, given their location!
  
The endometrial biopsy was postponed by my nurse practitioner, A, due to the two days of fever I had last week.  She didn't want to risk my having an infection of some kind or a possible kidney stone, so she postponed the procedure for later this month.  She was also able to alleviate most of my concern about the reason she feels it is necessary.  Though some of my test results are cause for concern, the ultrasound I had last week did not reveal any masses so the chances of uterine cancer, right now, are much lower.  But it's necessary to rule it out, given the abnormal cells seen by the pathologist.

I'm being treated with the utmost care.  And I am in awe of my good fortune every time I go to M. D. Anderson that I have been blessed with a really amazing team of medical professionals who continue to flush all possible demons from every corner. 

So, I came home and opened my own account at Blog For A Cure.  It's time to start giving back and the least I can do with my growing strength and increased stamina is encourage others.  It only takes a few minutes on the site to realize how many people are having a really, really hard time.   Reading the words of stage four cancer warriors is the quickest way I know to be humbled. 

I've learned that it's almost a given to be afraid every time a CT scan is scheduled or any new diagnostic test is suggested.  Like me, my new friends at BFAC realize the possibility for recurrence is a reality but, also like me, they don't want to give the "C" word any more power over our lives than it's already managed to scarf up.

Like I told Dave on the way home, "I'm WELL, so tell the voices in my head to SHUT UP!"  Then it occurred to me that it's MY hand on the volume control. I think I'll drown them out with some ZZ Top.  [SMILE]  Thanks for listening.  Talk amongst yourselves ...  



Wednesday, February 22, 2012

Random craziness.

I watched a movie the other night when I couldn't sleep. I couldn't tell you the name of the movie or who was in it or what it was about. (So, then, why did I bring it up, you might ask.) There was one line in this movie that whopped me up beside the head: "There's no time to be chicken." (Celestial choir.) It was as if God Himself had spoken to me. THERE'S NO TIME TO BE CHICKEN.

There is .. NO TIME .. to be CHICKEN.

Man, I needed that. I have been spending way too much time lately being chicken. Here's the thing .. between the time you find there is something to be concerned about and the actual time you are told that a) there is a bonafide problem or b) everything is a-okay, there is this land of limbo. Your choices are to either rise above the fear, continue living as though as all is well OR allowing yourself to be swallowed up by the "what ifs" and becoming paralyzed by fear. I have been somewhere in between, dipping my big toe in the deep end of the "paralyzed with fear pool" from time to time.

The internet is a wonderful place. Many of my friends live inside my computer, I can "big brother" my kids on facebook and be sure they are happy, well and safe at home. I can follow my treatment at MDA by reading all my reports filed by my various docs, pathologists, radiologists and all the "ologists" who have their finger in the Darlene Pie. It's pretty amazing. Then, I can take that information and google anything I don't understand and feel almost like third year medical student. Almost.

The downside of researching all that stuff on the internet is that you can often scare the living crap out of yourself.  And armed with only the vaguest of pathology reports .. one has to question the wisdom of late night googling sessions.  In the dark.  With only you, your flimsy pretend medical degree and the  world-wide-worry-web. 

A week from today I will be at MDA enjoying the attention of a variety of skilled professionals  working with amazing technology to be sure that I am cancer free EVERYWHERE even in places I wish they wouldn't really look!  I'm sure everything will be fine.  There is no cause for alarm .. and there sure as heck isn't any TIME TO BE CHICKEN! 


Because .. it's time to go FISHIN'!

On a lighter, happier, less psychotic note I found out yesterday that I have been one of the lucky ladies selected to attend this spring's "Casting For Recovery" at Joshua Creek Ranch in Boerne.  I was an alternate and now I am GOING!  Since I have never fly fished and it's something I've always wanted to try, I am so excited.  I'll be learning to tie flies and practice casting with 13 other breast cancer survivors before we spend a day with guides learning the "Tao" of fly fishing and practicing catch & release.  It's such a great opportunity and I'm so grateful to all the sponsors that make this retreat possible! It's scheduled for April 13 - 15, right before my birthday! WOOHOO!

(I like fish way better than chicken, any way!)

Saturday, February 11, 2012

Meanwhile, while waiting for the other shoe to drop


Breast Cancer Cell

Well I guess I've put this off as long as I can. I've had no interest in posting to the Herschel blog lately because I am just too danged busy being well. I went from December 27 to February 1 without any doctor or nurses appointments and the freedom of no impending doc visits made the idea of blood tests, miscellaneous scans and other diagnostic tools in the cancer doctor's magic bag of tricks just something I would rather not think about. For as long as it lasted, anyway.

I started walking again, first outside but then inside on the treadmill as the weather got more unpredictable and winter-like. At first I could walk only five or ten minutes at a pretty good clip. I have worked myself up to two or three fifteen minute sessions at least five days a week. More proof that I am well. (Yes, I'm still trying to convince myself. If I say it enough it's bound to be true, right?)

The truth is the pyschology of having had cancer has messed with my equilibrium lately more than the toxic cocktail of chemo meds ever did. Only now I wobble on the inside of my head going back and forth between the happy thoughts of being cancer free and the darker abyss of all the dreaded "what if's". What they say about ignorance being bliss is true. Now that I know what having cancer treatment feels like, and for the all the gratitude I feel to my family, legions of prayer warriors and medical team at MDA, I have NO desire to ever, ever go there again.

Still, I refuse to live in fear. I try not to let those ugly little scary thoughts take up too much of my time. But, at the same time, I want to be prepared ... just in case I ever have to hear those words again. "Honey, you have a cancer .."

But there is some valid cause for concern. In the forties, and up until the seventies in some countries, doctors were giving pregnant women who were at risk for miscarriage a drug called Diethylstilbestrol. My mother took this drug while pregnant with me. In the early seventies it was discovered that adolescent and young adult DES daughters were at risk for a specific and unusual type of vaginal and cervical cancer. Now they're learning that older DES daughters host a variety of reproductive issues and elevated cancer risks than in the general population. So on my first visit to the Cancer Prevention Building when I saw my new NP (nurse practitioner who has both a MS in nursing and a specialty) on 2/1, she was very thorough in her exam once she learned I was a DES daughter.

The good news is that two screening tests they performed came back normal. The probably-still-good-but-nerve-wracking news is that they want to perform a biopsy on my uterine tissue on 2/20 3/5*. I have an appointment three hours later to get the results so, at least, Hopefully, the worrisome, waiting part will be over quick. I'm forcing myself to be pleased that my medical team is being so thorough instead of allowing myself go into total freak out mode. (Well, at least I am trying ...)

*MDA changed my appointment for the uterine biopsy from 2/20 to 3/5 but there is no "after party" review scheduled so I guess I have to wait for results. No bueno.

Additionally, on 2/29 I am scheduled to have an ultrasound specific to my "girl parts" and another biopsy on some questionable tissue that has made itself evident in the last few months, also in the "girl" neighborhood. Look, I'm not embarrassed about this (okay, that's a lie, it is humiliating) but since I've drug you all on this cancer journey so far, you're not gonna abandon me NOW, just when it gets interesting, ARE YOU?

It's okay .. all you guys I used to drag around the playground (I'm so sorry for that!), rode bikes and played baseball with are excused. You don't have to go there. But for those of you who read this, whatEVER it is, to educate yourself and to keep up with my me, me, ME obsession, you'll be the almost-first-to-know if my girl parts continue to pass inspection.


God grant me the courage
to continue to flash my aging, naked bits and pieces
to complete strangers in white lab coats
all while hiding my big-assed fear behind
whatever funny remark I can rake up.
Please, God.