Friday, November 29, 2013

Thanks Obama!

Just thought I'd throw my two cents in ...

For the past 7 years, my health insurance has been through the Texas Insurance Risk Pool.  It's insurance for people with pre-existing conditions who are unable to obtain an individual health insurance policy through regular avenues.  Since we have our own business, and it's a small business, we are ineligible for a group policy.  So the pool has been a godsend!  The premiums are about double what a healthy person would pay, but thankfully we have been able to afford it.  Well, let's say we have made it a priority in our lives because we can't afford the alternative of having cancer and no insurance.  We have always "played by the rules" in that we have never been without health insurance, always doing what we had to do to have it for our family.

Thanks to the Affordable Care Act, the Texas Insurance Risk Pool will no longer exist as of 1/1/14.  It makes sense.  Now that insurance companies can no longer exclude people with pre-existing conditions, there is no need for the Risk Pool to exist.  We can get insurance elsewhere.  I've been very happy with my policy, but I can't keep it.  However, now I have lots of options and my premiums should be much lower than they are currently.  I think I am in the small minority of people who will be helped by Obamacare!

Aside from the inconvenience of having to go find another policy, I thought all would be good.  I decided to stick with the same insurance company who handles the Insurance Risk Pool.  I've been a satisfied customer, and they have a large network of providers.  But, recently I received a letter from MD Anderson (my primary and only healthcare provider) stating that although they accept this company's insurance now, because of the instability of the health care market, they cannot guarantee that they will continue to do so!  WHAT???!!!

Sooooo, even though I thought that the ACA wasn't going to negatively affect my healthcare issues, but in fact help me out financially, now it appears that my doctor and healthcare facility MAY OR MAY NOT be "in-network."  The creation of the Affordable Care Act has caused my insurance program to be cancelled, and may even cause me to have to leave MD Anderson and be treated elsewhere for my Stage IV breast cancer!  Talk about my life being turned upside down!

I credit MD Anderson for keeping me alive.  I would not be alive today if I had not decided to seek my medical care there 7 years ago.  I can't stand the thought of going anywhere else!!


Monday, November 4, 2013

Test results and chemo holiday!!!

I consulted with Dr. Moulder, another breast cancer oncologist at MD Anderson who is working on the "Clearinghouse" research study.  This, as I mentioned earlier, is a database of patients' tumor tissues/cells that are tested for genetic mutations or irregularities (totally different than BRCA gene testing.)  The findings help determine which drugs or kind of drugs the cancer cells would be most sensitive to, and will be available in my medical record for all time, much like tumor characteristics such as hormone sensitivity (ER/PR positive/negative) and Her2Neu status.  It's very personalized medicine -- the future of cancer research.  And the future is NOW at MD Anderson Cancer Center.  So happy to get my tumors in the study!  Also glad that all it takes for me, now, is another blood draw and signing papers authorizing them to use the tumor tissue they already have from my previous biopsies and mastectomy.  Easy peasy, but such valuable information!  Amazing what they are doing nowadays in cancer research.

Thankfully, the direction of my CURRENT treatment does NOT depend on the results of this genetic testing.  According to my latest CT scans and bone scan, overall my cancer is STABLE!  Yayyyy!  The bone metastases has all been stable (not growing yet not going away) for some time now.  This is where the majority of my metastases are --fairly widespread in the spine, ribs, femurs, etc. They are closely monitoring metastases in my lungs and liver, and they see very slight growth on those small tumors.  I am told that the minimal growth noted on the scans could be related to the way the tumors were "sliced" during the imaging process.  I trust that this is all it is, and not some really slow-growing tumors that are difficult to treat.  Regardless, even if it IS ever-so-slight tumor growth in the lungs and liver, the changes are not significant enough to warrant changing my treatment plan.  And, none of the metastatic lesions are affecting my level of health (from the medical personnel's point of view, that is.  I can feel that my lungs are not operating at 100%.)  My move to Abraxane over a year ago was prompted by slight tumor growth AND a pleural effusion.  I have no pleural effusion (fluid around the lungs) at present.

Soooo, great news, right?  Even BETTER is that Dr. Coscio is allowing me to have a "chemo holiday" over the holidays!  The plan is that I will finish out the 4-week cycle that I'm on now (last infusion on 11/20,) and then instead of taking only a week off and starting up again, I will have 6 WEEKS OFF!  Honestly I don't really know anymore how it feels to not be on chemo.  Surely I will feel better!  I think I have adjusted to this "new normal," so I am hoping to feel different/improved not having poison infused into my body on a weekly basis.  The holiday season is usually packed with family activities, and this year we are planning to squeeze in a visit to our family in Louisiana as well.  Should be FUN!!!!!

Thanks for reading!

Friday, October 25, 2013

October Craziness is Settling Down

October craziness is settling down here at The Pink Ribbon Shop.  Our little league football season is almost over, as is high school marching band season.  That means more family time for us, at least for the next few weeks!  Yay!  We enjoy being active and busy, but it's good to have some down time, too.

This week, I am scheduled to have my every-3-month scans and tests.  Whole body bone scan, CT scan of the chest, abdomen & pelvis, and labwork including tumor marker studies.  I have some anxiety, as usual!  I know that God is in control (of everything!) but being human, it is difficult for me to not worry about what the results might be.  Not sure if I've mentioned it here before, but for the last 4-week cycle of Abraxane, Dr. Coscio reduced my dose by 10%.  This will be a permanent change ... well, for as long as the Abraxane is working I guess.  The peripheral neuropathy symptoms were getting more severe, and I was just plain tired of being without energy.  And also the chemobrain ... I can't remember anything!  It is frustrating to be a (relatively) young woman and to have such a bad memory. It's like I have this cloud of fogginess in my brain.  I feel like I can never be totally sure of whatever facts I'm trying to communicate.  It's a very bad feeling.  And I feel sorry for my family who has to deal with my fogginess!

Next week, I am scheduled to see a new doctor.  Dr. Moulder is a breast cancer oncologist who works at the main campus at MD Anderson.  She is one of the investigators on a research study being conducted that Dr. Coscio wants to get me signed on to.  Although the Abraxane is working for me now, she wants me to get set up to participate in the study, so that when I need to, I will be good to go. I don't know all the details, but the way I understand it, they will run some additional genetic testing (I've already had BRCA-1 & 2) on my tumor cells.  They will then use information gleaned from that testing to determine which treatments I would most likely benefit from and which ones I would not.  High tech, cutting edge stuff!  I am SO, SO thankful that I'm being treated at the #1 cancer treatment center in the world!

Tuesday, October 1, 2013

Pink Ribbon King Cake

It's breast cancer awareness month!  Time for all the pink ribbons to come out, time for the NFL to turn pink, and time for pink ribbon king cakes!  What's a pink ribbon king cake?  I'm glad you asked!

Simply put, a king cake is a New Orleans-style pastry that's popular during the Mardi Gras season.  A melt-in-your-mouth Danish dough, braided with cinnamon and sugar, is baked to perfection and topped with fondant icing adorned with colorful sugars.  But unlike traditional New Orleans king cakes, the pink ribbon king cake is breast cancer awareness ribbon-shaped!  And unlike the traditional purple, green & gold coloration of Mardi Gras king cakes, the pink ribbon king cake is topped with pink sugar and sprinkles.

I am excited to announce that for the second consecutive year, world-famous Haydel's Bakery in New Orleans is offering their pink ribbon king cakes in support of breast cancer research.  For every pink ribbon king cake sold during October, Haydel's will donate $5.00 to The Pink Ribbon Shop Fund for Breast Cancer Research.  Woohoooo!  Thank you, Haydel's Bakery!!  (As I write this, I am watching my New Orleans Saints take a big lead in Monday Night Football ... WhoDat!)

This partnership is a huge honor for us.  Growing up in the New Orleans area, Haydel's was our go-to bakery for the best king cakes, chocolate doberge cakes (my personal favorite birthday cake,) and other sweet goodies such as petit fours and eclairs.  So to have the Haydel's family create the pink ribbon king cake and have its proceeds benefit our research fund, well ... it's just plain wonderful.

And I'm not done yet.  This is my blog and if I want to talk more about the pink ribbon king cake, I will, LOL.  I personally think that it is one beautiful cake!  However, last year, a Facebook fan of The Pink Ribbon Shop commented that it wasn't a very pretty cake.  I was highly offended!  Who, in New Orleans, would EVER think that a king cake was unattractive?  I get it, though.  If you're not FROM New Orleans, you may think that the only cakes that are pretty are tailored and fondant-rich.  You just don't understand.  Pretty cakes (on the world's standards anyway) don't have the back history of the Mardi Gras culture.  There's nothing tying their flavor to a lifestyle, to a particular time of year, to the sights & smells of Mardi Gras.  If you don't know about king cakes, if you haven't experienced Mardi Gras as a New Orleans native, you don't GET it.  And that's OK ... just don't talk bad about my king cake, before you try one!

And now that there are pink ribbon king cakes in honor of breast cancer awareness month, it's the perfect time to try one.  Not only are Haydel's king cakes the BEST, but you don't even have to live in NOLA to get one.  They ship!  Geaux get you one before October is over.

Lastly, Haydelicious (Haydel's Bakery blog) posted a very nice feature last week on the pink ribbon king cake and ME.  Check out the favorable press from our home town!

Friday, August 30, 2013

Our New Office -- Coming Soon

Quick little update of what's going on here at The Pink Ribbon Shop...

For the past several months, Danny and his Dad have been working on renovating a "shack" on our property that is to become our new office.  By renovating, I mean even replacing all of the studs, windows, doors, and making everything new except for the truss-style ceiling/roof structure.  I wish I had taken photos that accurately capture the dilapidated condition this building was in!  Termite damage, wood rot, mold & mildew, critter infestation ... it was quite a sight.  Not to mention it was filled with its previous tenant's moisture-soaked furniture and interesting "collection" of 80's headbanger records, memorabilia, and beer steins.  Aside from all that, it's been an exciting time for me, planning the space and all the details, even with our barebones budget.  Finally we can see the light at the end of the tunnel and it is all coming together nicely.  We hope to be moving in in the next couple of months, which means "Bye bye, mobile rental office trailer!"  Our 12x60 rental trailer was to be a temporary fix until our new warehouse/office could be built.  That was over 4 years ago!  As many of you know, stuff happens, and things don't always work out like WE have planned.  It's all in God's hands, and His timing, too!  Our new warehouse was not meant to be, at least not yet, and we settled into our small warehouse and made do with that and the "temporary" office trailer arrangement.  Once the new office is completed, we will no longer be paying rent, and our property will look SO much cuter without the big honkin' trailer on it.  Can't wait!!!

I will definitely post pictures of our new digs once it's completed and we are moved in.  :)

Tuesday, August 13, 2013

Fundraising Milestone and Great News!

Well, first things first ... Scans showed mostly "stable" findings.  There was slight increase in size of 2 nodules in the lung, but the increase was only about 2mm, which was considered insignificant.  All of the bone metastases, widespread though they are, appear to be just hanging out -- not going away, but not getting any worse/larger either.  The pleural effusion has not returned, and no enlarged lymph nodes are visible in my chest or other places.  Tumor marker (CA15-3) is holding steady at 12.something, well within the "normal" range of 0-25.  YAY ME!!!

I am approaching one year of being on Abraxane, and I guess you could say that it's been a huge success overall.  It's certainly not fun being on chemotherapy, and it has its ups and down, but knowing that it's working to keep me alive, makes it worthwhile!  The plan is for me to remain on Abraxane for as long as it's doing its job.  In the short term, that's at least another 3-4 months, after which I will have my scans and tumor markers repeated.

Speaking of being on Abraxane for the long haul, here's a funny story ... NOT!  A couple months ago, the receptionist at my doctor's office asked "You should be just about finished now, right?"  She was referring to my chemo course.  Most cancer patients go on chemo for a prescribed, set number of treatments or rounds, then they're done.  They "ring the bell" and celebrate being done with chemo!  Not the case with me, since I have stage IV cancer.  I answered something like "Actually, no, I'll be on this chemo until it stops working."  Then, with a big smile, SHE said, "Well I hope that happens real soon."  WHAT!?  That's got to be tops among stupid things to say to a cancer patient!!!  There is so much I could have said, but I just stood there, speechless, with my mouth open and my brow furled.  I very quickly determined that it would be futile to respond anyway to someone like this.  Danny and I got a big laugh out of that one.  Only it's actually kind of sad that someone could be that ignorant.  Especially someone who works at the patient reception desk at a cancer center!

More BIG NEWS  If you've been a regular reader here, you may know or remember that at the end of 2011, we established The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center.  We are still working to find just the right breast cancer research study to fund, but until then, the Fund continues to grow.  We are VERY, VERY excited to announce that the Fund's balance is nearing $50,000!  We are simply amazed and awed at how God has worked through our little family-run business to make this happen!  We are so thankful to all of our customers who have helped us get this far!  Being so close to the $50K mark, we thought it wouldn't hurt to celebrate a little early and ask everyone to chip in and help us reach this milestone in a BIG way!  There are several ways you can help:
  • Purchase our Funding the Cure with The Pink Ribbon Roundup bracelet bands.  Wear one, and give some to spread the word!  100% of your purchase goes to the Fund.
  • Make a donation at The Pink Ribbon Shop's Pink Ribbon Roundup Donation Page.  It's an easy way to donate $1.00, $5.00, or $10.00, without feeling obligated to make a purchase.  Of course, 100% of your donation made here will benefit the Fund.
  • Make a generous, tax-deductible donation of $25.00 or more at our MD Anderson MyGiving Page.  The money will go straight to our Fund, and you'll receive a nice thank you from MD Anderson.  (Note:  The MyGiving Page shows only the total amount donated via the the MyGiving page, and does not accurately reflect the Fund's actual balance.  At this time, the actual balance is approximately $10,000 more than shown.)
  • Shop at The Pink Ribbon Shop and make a $1.00 donation using the "Donation Opportunity" checkbox @ checkout.  These $1.00 donations really add up!
THANK YOU, THANK YOU in advance for helping us reach the $50,000 mark!  We couldn't have done it without you.

And thanks for reading!

Monday, July 29, 2013

Awaiting scan results, and other happenings

Today, I anxiously await a call from my doctor regarding last week's bone scan and CT scans.  Usually I would have a follow-up appointment with the doctor to get the results of these tests that I have done approximately every 3-4 months.  Since my doctor is out of the office this week (stay-cation, per our conversation last week,) she said she would contact me with the results either Friday (3 days ago) or Monday (today.)  Danny asked how I felt about that -- getting results by phone or email (actually MDA's messaging service.)  I feel fine about it as long as it's good results!  It's a time that all cancer patients stress over.  Waiting for test results.  No matter where you are in your cancer journey, it's normal to worry.  I know this from LOTS of experience, and also from relating to other cancer patients and survivors.  Of course my mind tends to dwell on the possible negatives.  Is she not calling me because she's contemplating how to break the bad news to me?  If so, is she now regretting that she agreed to contact me without a face-to-face appointment?  Has she forgotten to look up my results in the first place?  Oh, the power of negative thinking!  I am busying myself with setting up The Pink Ribbon Shop's Summer Sale, working on sports pictures for my son's youth football team, and making sure the girls' paperwork and supplies are in order for band camp which started today.  I went to the grocery.  We have family coming for dinner tonight (fried shrimp, YAY!)  But I know, that today is the day that I'm supposed to find out, and I am making sure my phone is with me, on my person, at all times.  It's just a layer of stress, or a cloud of stress, hanging over me.

I am feeling pretty good today.  My pinkie nail that was previously infected and had fallen off is coming back nicely... woohoo!  And I am healing up from my pass-out that occurred a few weeks ago.  Shortly before that, I had started doing some exercising.  Around the house, with weights.  Squats, lifts, etc.  Taking it real, real slow.  Went bike riding a couple times, me and David (my 10-year-old.)  I was feeling SO good!  On our way to bring the girls to Camp Lone Star (a Lutheran church camp a couple hours away,) I was telling Danny just how good I felt to be exercising again.  Love the feeling of getting stronger.  The endorphins were flowing, and I even thought that I already was looking better.  (probably not the case, as it hadn't been that long, but still, exercise will make you feel that good!)

I kid you not, later on THAT SAME DAY, I developed a fever and started having diarrhea again.  And I had no appetite whatsoever.  The fever got up to 101.8, late in the evening, and I just went to bed.  I couldn't bear the thought of making another trip to the emergency room.  Well the next morning, the fever was gone!  And never came back!  Thank goodness I decided not to rush to the ER since it was over 100.5 as the clinic advises.  However, the diarrhea continued, and I worried that the C. diff was back.  I had read that it has a high risk of recurrence, and since I am still on chemo, I was still at risk.  I laid around the house all weekend, not eating or drinking much, but feeling so-so.  I'm pretty sure I've covered this before, but maybe it's been a while.  I am a huge snowball fan.  Not snow cones, but snowballs.  Chocolate with cream, oh yeah!  Anyway ... I try to limit myself to snowballs only on the weekend, because if I don't, then sadly I am weak-willed and will get several a week.  Well, it was the weekend, and I figured what better time to get a large chocolate snowball when I am fighting against dehydration caused by diarrhea.  Right?  So I drive my weak & sick self and my 16-year-old daughter Christa to the snowball stand not far from the house.  It's about 100 degrees outside, give or take a few degrees.  There is no line, so thankfully there won't be a long wait.  We place our order.  I started to not feel well, so I sat down on the bench.  Then it was about our turn to pick up our snowballs, so we proceed to the pick-up window and stand in front, waiting.  I started to feel a little weak, then blackness came over my vision.  I remember saying "I don't feel good."

The next thing I remember, I open my eyes and say "I'm on the ground??"  I did not know why I was on the ground, or how I got to the ground, but I was on my back and there were several people standing over me.  Christa was on the phone with 9-1-1, clearly very shaken and worried.  My hat was gone and so were my sunglasses.  (Ahhh!  I'm in public, bald!)   According to Christa who witnessed the incident, I didn't respond when she was saying "Mom!  Mom!" and then I shook, then did some sort of weird and grotesque backwards lean over the railing of the snowball stand.  Luckily I did not continue over the rail backwards and head first, but went forward again and landed on the stand's porch, clunk-clunk-clunking my way to the porch floor.  It was only later that we pieced together all the clunking noises into a sequence of my injuries.

I awoke but still didn't feel up to getting up.  Sorry, Tropical SnowBalls, for passing out on your front porch then staying there for a while!  Surely that couldn't be good for business!  I did have the wherewithal to tell Christa to cancel the 9-1-1 call and just call her Dad to come get us.  Everyone around, which included the employees and customers of the snowball stand, was great -- very helpful and caring.  They applied cool wet rags to my neck and face and talked to me the whole time we waited for Danny to get there.  He got there real quick, helped me up and we headed to his truck to go home ... but I did make sure that one of us had my chocolate snowball in hand.  You know ... for later!

We went home and I went straight to bed.  I didn't know the extent of my injuries, or else they probably wouldn't have let me get in bed.  I started having pain in various places and we discovered that on the way down to the ground, I had hit my lower back, head, shoulder, and tailbone.  I had bruising and brushburn on my lower back (thank you railing.)  I had a bruise on my right shoulder, and a large red and sore area on the right side of my head.  The tailbone pain would "rear" its ugly head (I'm so punny) later.  I seemed to be fine, neurologically, and I recovered at home and took it easy the next few days.  The tailbone proved be the longest-lasting of all the injury's effects, and still today, about 5 weeks later, it is still bothersome.  But it IS improving, so I am happy for that, especially after reading that some tailbone injuries take weeks or months to heal, and some turn into lifelong pain issues!

Since all seemed to be healing up, and the diarrhea went away on its own (must not have been another bout of C. diff,) my chemo treatments continued as scheduled.  Didn't miss a one!  (Um, yay?)  At my next follow-up visit with the nurse practitioner, I detailed what had happened.  She was unmoved, and in her notes, proceeded to document the event with several inaccuracies such as  "Last week, she passed out during exercise." and "She did not hit her head."  Clearly we are not communicating well!!  At least she didn't say I had a "flat affect" like a previous note.

On another, yet bizarre note ...  one of my MD Anderson physicians was placed on administrative leave after allegedly POISONING HER LOVER with antifreeze!  I had only seen Dr. Gonzalez a couple of times, as she was my replacement main-campus doctor after Dr. Green left.  Danny forwarded me the Houston Chronicle article with the subject line "You've got to be kidding me!"  His dad had asked him if he heard of the MDA doctor who was arrested for allegedly poisoning her boyfriend.  Danny replied that no, he hadn't, but there are 100's if not 1000's of doctors at MDA.  A quick look-up and there she was, Dr. Gonzalez's mug shot and the story of how her physician boyfriend (with whom she had a "casual sexual relationship") had nearly died of kidney failure after she served him two strangely sweet tasting cups of coffee, even though he liked his coffee black!  His medical and lab findings were consistent with ethylene glycol poisoning.  Wow.  Just wow.

Needless to say, she is no longer one of my doctors, nor any other MDA patient's.  It's OK, because really, I didn't need two doctors.  Dr. Green, on the main campus, had been my primary oncologist for several years.  Dr. Coscio is my doctor at the Woodland's satellite location, and she mainly had been following my chemo schedules and infusions.  When Dr. Green left, she handed me to Dr. Gonzalez.  Since starting chemo last Summer, I was only seeing a doc downtown to get test/scan results.  All other times, usually about every 3-4 weeks, I was seeing Dr. Coscio.  And I really like her and am happy with her.  The decision to switch all of my care over to Dr. Coscio was now an easy one!   Honestly it was a bit awkward seeing her so often and developing a rapport with her, yet seeing a doctor I hardly knew (Dr. Gonzalez) for my test results every 3 months. Additionally, although Dr. Coscio is practicing as a general oncologist as one of just a handful of doctors at the MDA satellite campus @ the Woodlands, she explained that she is mostly seeing breast cancer patients and that breast cancer is her main specialty and interest.  She attends the weekly roundtable of breast cancer specialists where they meet at the main campus to discuss patients course of treatment and care.  So I feel a lot more comfortable knowing all of that about her, even though she is a relatively young doctor.  This little change uncomplicates my healthcare somewhat, which is always good!

Well, still waiting on results.  My only little worry is that I'm feeling a little discomfort just next to the sternum, on the right side.  This is how it felt when I had the enlarged lymph nodes adjacent to the sternum on the left side.  Hoping & praying for the best!  Want to stay on Abraxane for a long, long time!  I recently posted on the forum for advanced breast cancer patients, asking how long others were on Abraxane.  The record:  8 YEARS!  Hope I can beat that!

Thanks for reading.  Be back soon.

Tuesday, July 2, 2013

And it continues...the snowballing of side effects

Sighhhhh.  You know how sometimes, it's just one thing after another?  That's how I'm feeling now.  When will it end?!  I don't even have time to write, in one post, all that's been going on.  I'm having to keep notes on what's happening, so I can blog about it later.  Guess I'll just keep plugging away and eventually I'll be caught up...

Upon discharge from the ER after the pinkie fiasco, I was given prescriptions for two antibiotics.  One to take by mouth for 10 days and one to take for 20 days.  After the mangling and abuse my pinkie had endured, I certainly needed to be on antibiotics!  I faithfully took them until gone.  The pinkie v-e-r-y s-l-o-w-l-y improved, yet had a long way to go, even after the antibiotic course.  But I was moving on and getting better.  Yay.

A few, maybe 2-3 weeks after finishing the antibiotics, I started having diarrhea.  I really didn't think much of it, just oh great, now I've got some sort of stomach bug.  No fever, just watery diarrhea.  I told my doctor, who prescribed Lomotil.  But after a whole week of it, my temperature did start to rise, and the diarrhea was getting more and more severe.  Every time I sat on the toilet, there it was.  Not wanting to go to the ER again, especially not prematurely and not just for nothing, I waited until the fever persisted for over 24 hours.  So by the time I arrived at the MDA ER, I was really sick.  Lifeless, dehydrated, not eating, weight loss, febrile, and having 8-10 watery stools per day.  This time, we drove to the MDA main campus, intentionally avoiding the hospital's ER at MDA's satellite campus.  I was taken in fairly quickly.

After obtaining my history (including that of my extended course of antibiotics a few weeks prior,) the ER doc thought I probably had an infection called C. diff.  I remember this from nursing school:  a nasty bacterial infection in the bowels by an organism called Clostridium difficile.  The doc ordered lots of stuff.  IV fluids, labs, abdominal x-rays, urine culture, blood cultures, and stool culture (stool culture being the only way to definitively diagnosis C. diff.)  I received potassium and magnesium since I was low on those, as a result of the prolonged diarrhea.  I received Flagyl, the treatment of choice for C. diff infection.  Since cultures take a few days, I was told that they were treating me with the assumption that that's what I had.  After reading more about C. diff, it all made perfect sense to me.

C. diff is sometimes referred to as a "superbug."  This means it's super nasty, spreading through hospitals, and difficult to get rid of.  It commonly occurs after prolonged broad-spectrum antibiotic use, and it especially likes people who are immunocompromised, such as chemo patients, and the elderly.  So there were my 2 risk factors:  recent antibiotic use, plus I'm on chemo.  Yep.

I was actually happy that it seemed to be such a clear cut diagnosis.  There was a known treatment for it:  Flagyl.  Ironically, the treatment is yet another antibiotic!  I went home to recover after a night in the ER.  The diarrhea eventually stopped (it took weeks to transition into a sort of normalcy of BMs.)  For a couple of weeks, my abdomen actually ached, and it was tender to the touch.  I was told this was from inflammation of the colon, as a result of the C. diff infection.  Wow!  This was some serious stuff.  Never had THAT before.

At my follow-up with my oncologist (well, her nurse practitioner,) I asked if the stool culture had come back.  She said, "It doesn't look like one was done."  I was like, "WHAT?!"  Nope, not done.  Trust me, I DID provide one.  Passed the ER nurse in the hall after doing so, and held it up.  Told her there it was, on the counter, once back in my room.  And again, pointed it out to her, on the counter, as I was being discharged from the ER.  Evidently, she never submitted it to the lab!  Why can't people do their jobs??  THE MOST important and conclusive test to diagnose C. diff, and I provided the sample and it didn't get sent.  UGGHH!  So frustrating.

Cancer > chemo > nails separating from nailbeds > pinkie infection > antibiotics > C. diff infection from antibiotic course.  Side effects from treatment, then side effects from treatment of those side effects.  Help me!

It's times like these that I find it really hard to accept that God is in control.  Of course I know this is truth, but we as humans don't always understand His ways, and we never will.  I also know that things could be much worse.  We never have to look far to see those less fortunate than ourselves.  I need to pray for more understanding and patience.

Sunday, June 23, 2013

Pinkie Woes

Here's me, rocking the bald look on a recent happy day on my back deck ... one of my favorite places.

Got a lot to catch up on here!  Sorry for taking so long since my last post.  Some crazy things have been going on lately, and they've taken up both my time and energy.

Overall, chemo is going good, at least as it directly relates to Abraxane's side effects.  Yes, I am low on energy.  Yes, my toenails and fingernails are quite ugly.  Yes, I am still bald (for the most part.)  But I am not having peripheral neuropathy (pain/discomfort caused by nerve damage) in my hands and feet.  Yay.  Sounds like this is a very common side effect of Abraxane that I have somehow, by the grace of God, escaped.  Every now and then I feel a tinge of burning, but I think that hardly constitutes discomfort.  My power port is still intact, patent and working great.  No problems there.  However, part of the reason my nails are ugly is that they are separating from the nailbeds -- from the fingertips, downward.  This creates a great place for foodstuff, juices, dishwater and germs to collect, therefore putting me at risk for getting an infection, since I am already intermittently immunosuppressed from chemotherapy.  I make every effort to use utensils with all foods, and not eat with my hands/fingers.  Especially now that I've experienced the joy of paronychia, an infection of the hand or foot where the nail and skin meet at the side or the base of a fingernail or toenail.

It began innocently enough ... I noticed a scant amount of greenish-tan goo just under the nailtip of my right pinkie.  I "cleaned it out" myself with fingernail clippers and washed vigorously with soap and water.  Over the course of several days, I noticed that the last segment, from the last bend to the tip (medical term:  distal phalange,) of said pinkie was reddening.  And it was becoming sore.  It slowly progressed to deep red and very swollen, 2-3 times its normal size.  It was quite a sight!  I have pics, but I will spare you all!  (I shared the gruesome pics with my mom and sister who live a state away.)  I decided that it surely needed medical attention, so I messaged my nurse and told her I was coming in to be seen.  I was seen by Dr. Coscio's nurse practitioner, who said it was definitely infected, which was fairly obvious.  She sent me for an x-ray to rule out a bone infection (which turned out negative for that, thank goodness.)  After the x-ray, I returned to the clinic and sat in the waiting room, and I noticed a red streak starting at my pinkie and heading up my hand, toward my wrist.  I knew that this was not a good sign.  I showed the nurse, and she was concerned also.  She warned me that if I didn't get antibiotic therapy, pronto, that I could lose my finger!  She said that they were planning to ADMIT ME through the ER for "immediate" IV antibiotics.  I was instructed to proceed to the emergency room, as that would be the fastest way for me to get the immediate antibiotics that I needed.

I called Danny and told him of the plans to admit me, possibly for 2-3 days is what I was told.  I walked on over and checked in at the ER (which is not an MD Anderson ER, but the hospital's, where MDA's satellite clinic where I get my weekly chemo, resides.)   I saw a triage nurse.  Told her of my finger issues, etc.  She had received, via fax, some of my medical record from the day's clinic visit.  A couple of pages, which she handed me and told me to give to the ER nurse once I was taken in.  I took a seat in the waiting room.  And there I sat, for about 3-4 HOURS!!!

A little background info:  I was alone.  I'm hardly ever alone at MD Anderson!  Danny almost always goes with me, but this day, since I was just going to have my pinkie looked at, I decided to go by myself.  With my treatments being once a week, and sometimes having extra testing or seeing other doctors about various other issues, we (Danny & I) miss at least one day of work a week.  This really adds up since we own our own small business.  We don't have many employees -- just 1-4 depending on the time of year.  So if we are busy at work or working on a project and it looks like I may have more than one day's appointment at MDA in a week, I do sometimes "allow" Danny to stay at work instead of having to go with me.  Allow is really not the appropriate word here.  It's complicated.  He wants to go with me.  I want him to go with me.  I am able to drive myself, and I don't get sick with my treatments.  He keeps me company during all the waiting and infusions.  It's actually kinda sorta in a really weird way like a date -- we go to lunch, or breakfast, and we are alone, for the most part.  We get a lot of talking done on the drive.  But sometimes it just doesn't make sense for him to miss even more work.  Sooooo, since it was "just a pinkie," I went alone.  And then had to call him, upset, that I was going to have to miss some of the kids' weekend activities, including an end-of-year band concert of my star percussionist daughter!  And that he needed to pack me a bag because I was being admitted.  Not only that, but when you have 3 busy kids at home, the parents can't just go to the hospital without working out who's going to keep the kids.  And how are they going to get to all their things?  Thankfully we have Danny's parents who live nearby and help us out tremendously whenever we have a need, especially when it's related to my medical appointments.  So not only did he need to pack me a bag, but also make the kid arrangements.

I'm in the ER waiting room, and the hours start to tick by.  I am getting aggravated (understatement.)  At the time of my arrival, there were only two other patients in the waiting room.  One is puking, continuously ... loudly ... into a bag.  I am thinking that this is not a good place for a chemo patient to be for long.  Soon the waiting room is full.  Many patients who arrived after me are being taken in ahead of me.  I go to the desk and ask how much longer before I am seen.  It shouldn't be much longer, they say.  I tell them that I was told that I needed antibiotics right away, that I could lose my finger.  The red streak is growing more prominent on my hand and wrist, leading from my pinkie and heading upward.  But clearly there is no urgency here.  The urgency that was communicated to me at the clinic when they sent me to the ER was clearly not communicated to the ER.  I'm a former nurse ... I definitely understand that if a patient is triaged with a red pinkie problem, that it's going to be fairly low priority.  Not life or death.  Can-wait-in-waiting-room-for-several-hours low priority.  However, I was told at the clinic that I needed immediate antibiotic therapy, first dose.  That I needed to be admitted for subsequent IV dosesThat I could lose my finger.  I thought that being a cancer patient, on chemo, with an infection issue going on, being sent to the ER from elsewhere in the same building, sent from the MD Anderson clinic, that all these things would mean something to the ER and I would be seen and given the immediate antibiotics that was being recommended by my oncologist.  I thought wrong!

After the first hour in the waiting room with the puky patient, I'm not happy, and I'm still alone ... but I have my smart phone.  So I message my doctor's nurse.  Something like this:  "Suggestion -- direct admit instead of admit through ER."  In the medical world a direct admit is when a physician writes orders for a patient to be admitted and whatever else they want the patient to have done once they are admitted.  The admission takes place through the hospital's admit department, not the ER.  I am still thinking that I'm going to be seen in the ER, then be admitted.  But I'm thinking that clearly MDA has not worked this partnership out well, at least as it relates to sending cancer patients to the non-MDA hospital's ER.  Time is ticking by.  I get a response from the clinic nurse that they really feel like the ER is the way to go for me to get the immediate antibiotics that I need.  To that, I respond that I guess my idea of immediate and their idea of immediate are two different things.  Then the nurse calls me on my cell, to say that the nurse practitioner just spoke to the ER and was told that it wouldn't be too much longer.  Time is still ticking.  Danny was finally able to join me, and I of course filled him in on all the happenings (I am pretty upset.)  Another phone call from the clinic nurse who asks me "you have STILL not been seen?" and I say "No."  I may not have the exact order and timing of all this down, writing so long after the fact, but I ended up sitting in the waiting room for about 3 hours.

When I finally got to see the ER doc ... he knew NOTHING about me!  I felt like I had basically been dumped to the ER.  I had to explain my whole finger/medical issue to the emergency room physician.  There were no orders coming from my oncologist regarding antibiotics.  When I told him the plans that were communicated to me ... well,  the ER doc didn't even agree with me needing IV antibiotics, and he didn't think I needed to be admitted either.  He called my onc and she OK'd his plans.  He cut open my pinkie to try and squeeze the pus out (but there was no "pocket of pus" to squeeze, it was just all in the tissues not like an abcess, so hardly anything came out) but that turned out to be an unproductive and painful mangling of my finger with a scalpel.  Uggghhh!  What a day.  Last thing, I did receive antibiotics, but in 2 separate IM injections -- one in each thigh.  Honest to God the most painful injections I have ever ever had (don't ever get Cleocin IM, just saying.)  Which then made me nauseated, sweaty and weak and just like that they discharged me and said ba-bye.  Could hardly walk out of that ER my legs hurt so bad.

Gets me so worked up, just thinking about it all again!!  If the oncologist had a plan, that plan should have been communicated to the ER, and not just to the patient!  If you're going to be sent to the ER, to be evaluated by the ER doc, then tell the patient that!  Not handled well.  :((

Update:  finger is better now, after a long course of oral antibiotics, many dressing changes and the disgusting loss of my pinkie nail.  And I'm in a better mental state now.  :))  Have lotsa other topics to cover, but will have to wait til next post.  This bitchy one came out longer than I expected, sorry.

Monday, April 8, 2013


Well I was pretty low when I wrote my last post.  I've had a lot of ups and downs with dealing with my appearance and limitations.  Sundays are especially hard, as I try to get ready for church and find an outfit and headwear that doesn't feel like I'm an old lady, gypsy, or both.  But yesterday, something happened that lifted my spirits.  After church, my family and I went to a local restaurant for lunch.  When we were finished, the waiter brought us our bill and said "You might want to look inside before you take out your credit card."  So we did.  Handwritten on the back of the receipt was a handwritten note that said "Your bill was paid by the table who sat behind you."  We were the recipients of an act of random kindness!  How awesome is that?  All I remember about them was that it was a family with a young son, and, judging by their clothing, they were Houston Texans fans!  We relished the moment, all the way home.

Interestingly, our discussion during lunch was how God's answers to our prayers is sometimes "Yes," sometimes "No," and sometimes "Not now."  My 16-year-old daughter was turned down for a summer camp position because there were too many applicants who had applied ahead of her.  She really has a heart for the Lord, and has been looking forward to junior staffing for a long time.  She just didn't understand why, with such a strong desire to serve and many years of experience attending the camp, she didn't get the position.  She was tearful about it.  What it came down to was that we don't always know why God gives us the answers he does.  His answers and His plan for us isn't always what our plans are! 

After finding out about our bill being paid, the kids wanted to know why a stranger would do that.  We just said we didn't know, that it seemed just a random act of kindness, and that whatever the reason, it did lift us up.  We wondered, "Was part of our conversation overheard by the kind strangers?"  Perhaps God knew we needed some lifting right then and there.  Perhaps He used these strangers for just that purpose.  God at work, for sure!  It was agreed that we should pay it forward one day SOON by doing something similar to a person or family in need.  Because you never know what someone else is going through.

Tuesday, March 19, 2013

Feeling blahhhh

I know it's normal to feel blah sometimes -- for cancer patients and non-cancer-patients alike!  Just venting here...

I am sick sick sick of having to live within arm's reach of a tissue box.  [OK I just checked and I see that I haven't before mentioned this issue on my blog -- here goes]  My nose runs CONSTANTLY since I've been on Abraxane.  Clear water (with the occasional blood-tinge.)  It literally DRIPS out without my consent and at times, without my knowledge!  Everywhere I go, I have to make sure I have tissues on my person, always.  I have to be well-stocked on Kleenex or Puffs at my desk, in my kitchen, in my car, in my purse, and in my pocket.  When it first started, I thought it was allergies, so I tried all the OTC allergy meds.  Nothing.  Zero improvement.  My face and eyes seem a little puffy, as well, as evidenced by the fact that all of my previously wearable sunglasses make creases in my cheeks.  Although this could be because I've gained weight, which is another animal altogether.  :(((  I mentioned the nose running to my doctor, long ago, and she said "I know it seems counter-intuitive, but it's caused by dryness in the nasal membranes."  Seeming counter-intuitive just might qualify as the understatement of the year!  She suggested that I try saline nasal spray.  I said "ewwwwkayyyy" and later told Danny that that was the most absurd thing I had ever heard.  I've got nothing BUT moisture in there.  An over-abundance.

Well, after several months of embarrassing, public, nasal drip-outs, I finally decided to try a saline nasal spray.  Guess what happened.  It just simply ran out of my nose.  Instantly.  Gahhhhh!  Here is yet another symptom, of which I've had several over the years, that I tell the doctor and it's like she's never ever had any other patient with that same complaint.  And yet I hear other patients speak of the same problem.  Case in point:  during a recent waiting room wait, I heard another patient complain of her nose dripping/running.  I felt so redeemed!  See!  I'm not crazy!  There is an online "advanced breast cancer" community where we stage IV fighters can converse on our shared problems.  Maybe the doctors need to read those sometimes.

And the other thing that's got me down, is that I still can't seem to come to terms with how I look.  Bald, with no eyebrows or eyelashes.  A woman is not supposed  to look like this.  Even with hats, it looks abnormal.  I never feel like I look good.  And even when I think I do, I later see photos of myself and am shocked to see how awful I look.  Also, I feel like I am aging at an extremely accelerated pace.  I look like a little old lady.  More and more wrinkles, by the day!  Hate it!!!  All my life, I've been blessed with good skin, and always looking younger than my age.  Now I look older than my forty-something years.  Very depressing.  The baldness, the oldness, PLUS the 10-15 pounds weight gain = I am quite a sight!

Although I am still able to care for my family, and I do try to focus on the positives and the things I CAN do, sometimes I wallow and can only think of the bad.  Guess I'm only human.  There are so many LITTLE things though.  My nails are coming off my fingers and toes.  The constant nose running.  The weight gain, which my doctor says is a result of the chemo slowing my metabolism.  The leg pain which still exists when I'm the least bit active (although it has improved.)  The eye irritation/dryness and sometimes over-watering.  The mouth sores (I have 2 large ones, right now.)  The constipation.  The neuropathy symptoms, which come and go (I can't even bring myself to mention here the latest on that front.)

Now that I've gotten all this out, I am able to think of many, many side effects that I'm glad I DON'T have -- which is helping to lift me out of this funk.  I'm not puking.  I'm not bedridden.  I don't have brain mets.  I can still walk and visit family and see my kids' activities.  God is with me and clearly is not finished with me yet.

Tuesday, March 5, 2013

The latest ... I'm doing OK!

A few weeks ago, I had my usual round of every-three-month scans & tests.  And also a bone scan.  The CT scan of the chest & abdomen showed NO pleural effusion, NO enlarged lymph nodes, STABLE lung & liver mets and STABLE skeletal mets.  I'll take it!  Although I was hoping for more improvement, stability is better than progression.  The bone scan was done because I hadn't had one in almost 3 years.  My ortho doc thought it was a good idea to look at bones elsewhere in the body because for quite some time they've only been seeing the bones visible on my chest/abd CT scans, AND because the report of the MRI of the lumbar and sacral spine was so dismal.  The bone scan showed "Multiple active osseous metastases, new/progressive compared to 04/2010 bone scan."  Ewww.  Horrible sounding, yes.  But, to keep things in perspective, this is compared to a 2010 bone scan.  Between 2010 and now, I've been through multiple treatment changes because of progression of the cancer in many areas of the body.  We KNOW it's been progressing.  We just haven't been closely monitoring the progression in the bones as in other places.  So it's more specific information about the bones, it's not necessarily all brand new metastases and cause to panic and change treatment when clearly the current chemo is doing some good things.

Also based on the MRI findings, my ortho doc recommended radiation to the spine to try and alleviate the leg pain I've been having.  That really threw me for a loop!  And honestly, it disturbed me.  I'm no doctor, but I have been around cancer for a very long time and I was a registered nurse for 10+ years.  While I don't understand everything that radiologists put in scan reports, I do get a lot of it.  And from what I was reading in my MRI report, although there was heavy cancer involvement  in the spine, it was not impinging on the neural pathways leading away from the spine and into the leg.  It wasn't clear to me that the spine mets was the cause of my leg pain.  I didn't have any back pain.  The pain didn't come from the back and radiate down the leg.  In fact the pain was pretty far from my back.  Perhaps it wasn't even related to my cancer, even though that is what I always want to rule out when I have any new symptom.

Let me say here that I DO NOT have time for radiation.  The last thing I need is to have to go somewhere EVERY DAY for weeks.  The last time I had radiation was 13 years ago after my mastectomy & chemo.  Five days a week for 5 weeks.  Easy peasy on the body, but highly inconvenient!  I had a 13-year-old, a 3-year-old, and an infant.  With a lot of family help, I got to those radiation appointments just fine.  But now, with a 15-, 13- and 10-year-old at home and involved in all kinds of different activities and in 3 different schools, plus our own business to run, it wouldn't be as easy!  Plus, it just seemed unnecessary to me.  That's right, even though ortho doc is recommending radiation, Dr. Kim doesn't think she needs it.  :)

I quietly took in all the information that I was given.  After leaving the office, Danny and I talked and we both agreed that radiation seemed rather extreme at this time.  Something else was also eating at me:  the radiation that I had to the chest 13 years ago wasn't even successful at keeping the cancer at bay locally!  At the time the cancer came back as stage IV, it also appeared as a local lesion right on the mastectomy scar!  How could I be sure that radiation to the spine would alleviate the leg pain?  Or even rid the spine of cancer?  We both felt that the doctor wanted to find a cause and provide a treatment for my leg pain.  I had an appointment scheduled with my breast cancer oncologist, Dr. Coscio, in the following couple weeks, and we decided to discuss the issue with her.

We explained the whole situation to Dr. Coscio, and she went along with our NOT wanting to have radiation.  She wasn't convinced, either, that radiation was an appropriate treatment for me at this time.  Instead, she referred me to a pain specialist to try and get to the bottom of my leg pain.  I was able to see Dr. Chai that same day.  He reviewed my scans and agreed that it didn't appear the spine issues were causing the leg pain.  Since they did show some inflammation in the knee, I asked if I could take regular doses of some kind of anti-inflammatory.  He prescribed one, to take daily, and also a pain med to take as needed.

Amazingly, the anti-inflammatory med has helped!  It hasn't completely taken away the discomfort, but I am able to do a lot more than before, and I've even started walking a couple times a week.  Like I always say, YOU HAVE TO STAY ON TOP OF YOUR HEALTHCARE!  Were it not for us diligently questioning my treatment plan and the reasoning behind it, I would be getting radiation to the spine right now.  Unnecessary, expensive, and inconvenient.

Now that I'm looking and feeling like a know-it-all, I want to clarify that if more than one of my doctors would have recommended radiation, I would have done it, absolutely.  Sure, I would have complained, (most likely, a lot!) but I would never decline doctor-recommended treatment on the basis of inconvenience.  In this case there was much more to consider.  And 2 out of 3 of my doctors didn't think it was a good option.

So, so thankful that I'm still able to do all that I do!  Blessed!

Thanks for reading.

Wednesday, January 23, 2013

FUNDING THE CURE - Recap & Update!

How about a little good news!?

If you're a regular follower of my blog or shop, you may remember that a little over a year ago, The Pink Ribbon Shop established The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center as a commitment to help FUND THE CURE for breast cancer.   To establish the Fund and keep it going, we were required to commit to donating a minimum of $20,000 to the Fund in any four-year period.  In the past, The Pink Ribbon Shop regularly donated to various organizations.  But this was an official commitment!  Could we do it?

We never imagined how successful this initiative would be!  Within the first few months, we were able to donate $10,000 to the Fund, and we were ecstatic that in such a short time, we were already halfway to our $20,000 four-year commitment.  This just ignited our passion to FUND THE CURE even more!  We brainstormed ways that we could multiply our company's donations.  We prayed that God would lead and guide us in our endeavor to make a difference.

I created The Pink Ribbon Roundup program (adorable western-themed logo and all!) in the hopes of allowing our customers to "round up" their change at checkout to be directed to our Fund as a donation.  I had seen other companies do this for other causes, and I was super excited to implement something similar at The Pink Ribbon Shop.  I thought who could really refuse to round up pennies for such a good cause?!  Unfortunately, there were limitations of our shopping cart program that would not allow this to be an option.  I even asked our software geeks if it could be done as a custom option.  Time and time again I was told that it couldn't be done (something about it not being possible on our "platform," whatever that means!)  There were private-software-company add-on programs out there, but they wanted to take 10% (and up) in "fees" from the donations.  NO THANK YOU!  This was extremely disappointing.  Seriously -- I cried.  I mean, after all, we had this really cute logo and name, and now it didn't make sense, at least not in the way I had hoped.

In the meantime, while I messed around with our shopping cart issues, God gave Danny the idea to create a special pink ribbon item whose proceeds would benefit the Fund.  Since the pink silicone bracelet bands have always been one of our top sellers, it made sense that getting a custom band made just for this purpose could be a lucrative option.  (Yay, I get to use the Pink Ribbon Roundup logo!)  Additionally, we made the purchase price of these bracelets lower than all the others ($1.00 each) ... incentive for people to purchase them over all the others.  I have to admit that this was a bit scary, from a business standpoint.  We had to trust that our business could handle this change ... undercutting our own best-selling items with an item that made no profit whatsoever.  On top of all of that, we also decided to donate the cost of the item, making the entire purchase price of this special bracelet band a donation to our Fund.  In essence, we would be using money that we would donate anyway, to purchase the custom bracelets.  Selling them = multiplying our donations!  We sold our first Funding the Cure with The Pink Ribbon Roundup silicone bracelet band on May 8, 2012.

Somewhere in the midst of all of this (not sure of the exact timing,) we also set up a way for people to donate to the Fund through other avenues.  A product page was set up whereby customers may donate $1.00, $5.00 or $10.00 to our Fund.   We also created an MD Anderson myGiving page where tax-deductible donations can be made by individuals, groups or businesses.  Trying to make it easy for anyone wanting to help fund the cure!

After exhausting the "rounding up" the change at checkout option, we decided to try a different route of having a simple question at checkout.  A "checkout question" could supposedly have a dollar amount attached to any of its answers.  Once set up, the specified dollar amount is added to the shopping cart.  But this, too, was not meant to be.  Yet another stumbling block!  Although it appeared that you could associate a dollar amount to a checkout question, it didn't work.  And we were told that it couldn't be done.  After months of back & forths and frustrations with the software geeks about rounding up and checkout questions, it looked as if neither would ever happen.  Why were my plans not working!!??  I was like, don't tell me it CAN'T be done, OF COURSE it CAN be done, you guys just won't do it!  So frustrating.  We prayed about it.  Our own efforts weren't working!  We just had to wait for God's timing.  His answer came in the form of a software update:  a dollar amount could now be associated with a checkout question's answer.  Success!  The "Donation Opportunity" was created.  To make it simple, affordable and appealing to our customers, a simple click on the "Yes I would like to donate $1.00 to The Pink Ribbon Shop Fund for Breast Cancer Research" box during the checkout process donates $1.00 to our Fund.  This went live on our website in July of 2012.

I want to add here that even when we think we have all the answers or best plans in life, we don't!  God has a plan for all of us.  Even our businesses!  As it turned out, the $1.00 Donation Opportunity at checkout was a much simpler and fruitful option than the "rounding up" of change.  AND, what was actually a Plan B, the Funding the Cure with The Pink Ribbon Roundup bracelets, turned out to be HUGELY SUCCESSFUL!  And as far we can see, it didn't affect our bottom line at all.  It only added thousands of dollars to our Research Fund!!!

Another exciting thing that started happening in 2012 was that groups were fundraising for our Fund!  Local schools, youth football leagues, cheer squads, and even a senior living center hosted/held events whose proceeds were donated to The Pink Ribbon Shop Fund for Breast Cancer Research.  We feel beyond blessed to live and work in such a generous, giving community!  Thank you, Kingwood, Texas!  There were others, outside of our community, that donated directly through our myGiving page.  We don't get all the details when that happens, but we appreciate it nonetheless!

Lastly, this past October, our Fund had its first "corporate sponsorship" of sorts.  Haydel's Bakery in New Orleans, Louisiana (our home town) created a pink ribbon king cake (for those of you who don't know, it's a New-Orleans-style pastry treat most popular during the Mardi Gras season) whose sales would benefit our Fund.  Woohoo!  May we have many, many more partnerships such as this!

I kept the Pink Ribbon Roundup as the umbrella name of our entire Funding the Cure fundraising program. No matter how you donate to our Fund, you've participated in The Pink Ribbon Roundup!

Whew!  So are you ready for the good news!?  The numbers are in!  Drumroll.....................
A whopping $31,150.22 was donated to The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson Cancer Center in 2012!!!  This surpasses our wildest dreams of how we would contribute to FUNDING THE CURE for breast cancer!

THANK YOU, THANK YOU, THANK YOU! to all of our customers and everyone who contributed to the Fund in any way!  We couldn't have done it without YOU!

In just 13 months, our Research Fund at MD Anderson Cancer Center now has over $41,000 in it.  We are in the process of choosing a research project to support.  Yes, we actually get to pick one!  So, so awesome.

Thank you again, and thanks for reading.


Thursday, January 10, 2013

Hanging in there

Not been the best couple of weeks...

Still having pain behind knee.  As long as I do virtually no activity, I feel good.  Any time on my feet causes pain.  I am not doing well with this!  I am usually on the go and active.  I haven't exercised in months, so have gained weight and am seriously deconditioned.  I thought being home over the holidays and being able to take it easy while the kids were still off from school would be good, but it hasn't been good for my psyche.  Saw orthopedist at MDA who confirmed Baker's cyst from ultrasound report, but could see nothing on my knee x-ray that would cause the cyst (which I figured, because I'm not having any knee problems.)  So he ordered more tests:  MRI of the lumbosacral spines, MRI of right leg, and x-ray of right femur.  I've only had the MRI of the spine so far.  The others had to be rescheduled because when they were scheduled, Danny was out of town on a church youth trip.  Everything is delayed now, so I won't have the complete results and follow-up visit with the doctor for a couple more weeks.  I had a horrible initial visit with the ortho doc, so the other issue that is delaying everything is my report to the Patient Advocacy Department and a physician change request.  Uggh, long story, I'll explain later.  Very much NOT like my usual MD Anderson visits.  Oh I'm such a bad patient!

One good thing, yet bad thing, about the mymdanderson website, is that you can log in and view your medical record online.  Seven days after having any test done, you can see the report.  Generally, when I have anything done, I am seeing my doctor to get the results within that 7-day period.  But because of the ortho issue mentioned above, it's been 7+ days since my spine MRI and my doctor appointment is still a ways away.  So I looked.  I probably shouldn't have.  Of course I've always known of my bone mets to the spine from my frequent CT scans.  But the MRI report sounds awful!  Any time you start reading "widespread metastatic disease to the lumbosacral spine and posterior [bilateral] ilia," you know it can't be good.  It was very upsetting, to say the least.  I'm on chemo, but is this a new development or has it always been there, just not seen so well on my previous CT scans?  Being that I've never had an MRI of the spine, there isn't anything from my past record that can be compared to it.  Fortunately I did have an appointment with Dr. Coscio, my breast cancer oncologist, as a chemo check-in.  She made me feel a whole lot better about the MRI findings.  She showed me that the mets documented on the MRI were previously seen on the CT scans, just not in such detailed, high resolution as the MRI shows.  And also, even the documented issues in the spine and ilia do not explain the leg pain.  So, still no explanation for that.  Not time for a treatment change, yet.  Scheduled to have all my regular CT's, chest x-ray and labwork in February.  Other than my leg discomfort, I am feeling pretty good physically.  Passing my lung self-test!  Not expecting any changes in the chest department.

Mentally, though, is another story.  I think I have serious chemobrain, or else serious psychological and emotional issues.  Maybe both!  I can't remember anything anymore.  It's like I'm in a fog.  And I don't sleep well.  Don't feel like doing anything.  Danny says it's been difficult communicating with me.  And we're having trouble getting along.  I'm not nice.  Just what a cancer patient needs, is a troubled marriage, right?  It's a pretty sucky position to be in, but we are working through it.  Praying a lot, just taking it day by day.  We wouldn't have lasted over 20 years without getting through some ups and downs.  Hopefully this, too, shall pass.