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.

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 doses.  That 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.

ARK

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.

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.

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.

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.

Kim

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.

Brief Update

Well I thought that once October ended, I would have more time to blog, but that hasn't been the case.  We just hosted a Christmas party last weekend, and its grown so much it's pretty much taken on a life of its own ... I can't help putting so much time and energy into it!  More details later, but WHEW!  It was awesome, but I feel relief that it's over.  Now onto finishing my Christmas shopping -- been squeezing in some online shopping for a few weeks already.  Love Christmas time!!

I've been feeling pretty good.  Didn't know that Abraxane was going to cause my fingernails to begin separating from the nailbeds.  Eww!  Not pretty!  And I have to be careful doing laundry and other things that put pressure on the fingernails, which you'd be surprised at how much does that.  Also been having pain behind the knee (popliteal area, back of leg) whenever I'm on my feet for more than 30 minutes.  This has been since I first started chemo, and it's not going away.  Curious to know what is causing that.  Of course, I've self-diagnosed myself as having a Baker's cyst, which is isn't actually a cyst but a buildup of fluid at that location that's caused by some underlying problem, usually the knee.  But my knee isn't hurting me and I don't know what that underlying problem could be, other than something cancer-related.  Sighhhh.  Planning to mention that to my oncologist next week.  Will probably get an ortho consult to get checked out.  Having excessive, watery nose running that's downright weird and VERY annoying.  Please explain this, Dr. Coscio!  Still have chemo fuzz on the head.  Only a few eyelashes left, so mascara is futile.  Eyebrows are very sparse also.  Oh the joys!

But right now:  enjoying my week off between chemo cycles, and being home more in my Christmas-decorated house.

Thanks for reading!

Great news & happy days

Well, I finally had my CT scans & chest x-ray to determine the effectiveness of Abraxane, which I have been on for 12 weeks.  It's working!  CT scan of the chest shows "Interval response to therapy with improved left pleural effusion and pleural nodularities."  That was the final impression.  The body of the report actually says "The previously seen left pleural effusion has resolved.  The bilateral pleural nodularity has improved since the prior studies.  No new pulmonary nodule or mass is seen.  The overall appearance would be suggestive of complete response to therapy."  In non-medical jargon, this means that they can no longer see fluid around my left lung, the nodules previously seen in both lungs are now smaller than before, and there are no new areas of cancer.  WOW!  I haven't seen language this positive in any of my medical reports in a long time!  Amazing!  Wonderful!  The CT scan of the abdomen is not as glowing, but still pretty good:  "Stable treated bilobar hepatic metastasis.  Resolved left para-aortic adenopathy.  Stable bony metastasis."  This means that the cancerous lesions in both lobes of my liver are unchanged.  No better, but no worse either.  The enlarged lymph node previously seen near my abdominal aortic artery is no longer enlarged.  This is good.  And, the metastatic lesions seen in multiple bony areas are unchanged.  No new cancer seen anywhere.  Yay!  Makes the hair loss and other chemo side effects all worthwhile!  I have not seen my chest x-ray results, but I have to assume that they are similarly positive in nature.

And while I'm on happy news, I want to share what my sweet Christa (my 15 year-old) did.  She's a 10th grader and is taking a Speech class.  Her teacher assigned everyone to write/present a speech on a "Real Life Hero."  She chose me!  I didn't know about it until after she presented, but she got a 100 on it!  And she must have delivered it quite effectively, because at the end, her teacher said "Wow.  I don't know how we can hear something like that and not DO something."  I was so proud, and happy, and overcome with joy that my daughter would choose me as her "real life hero"!  How awesome is that!?  What a MOM moment!

Mr. Langston, the speech teacher, discussed with Christa the possibility of the class doing some sort of fundraiser for our Fund (The Pink Ribbon Shop Fund for Breast Cancer Research at MD Anderson.)  Perhaps something that involved all four of his speech classes.  They considered purchasing a Pink Ribbon King Cake for each class to enjoy (sold through a New Orleans-based bakery in October and whose sales benefit the Fund,) but decided that it was a bit too pricey for a high school class to have shipped from N.O. to Kingwood, TX.  In the end, Mr. Langston left it up to Christa as to what to do.  Once she told me about it all, I, of course, wanted to do all I could to assist with this impromptu project.  I suggested that the classes have a competition as to who could raise the most money, with the winner getting a Pink Ribbon King Cake party, compliments of The Pink Ribbon Shop.  Christa thought that sounded great!  Mr. Langston and the other students agreed, and Christa and I set to work on working out the logistics.  The contest would run through the end of October (about 3 weeks from start date.)  We made slotted tops out of pink cardstock to replace the metal tops of four large mason jars (one for each class period to collect funds in.)  Each jar was labeled with the appropriate class period number.  I donated our Pink Ribbon Roundup bands and hot pink satin ribbon pins, one of which each student could take whenever they made a donation into the class jar.  Christa and Mr. Langston worked together in explaining the project to each class (his other speech classes had not had the opportunity to hear Christa's speech.)  In less than 3 weeks time, four high school speech classes had raised $645.43!!!  So, so proud of Christa, and amazed at the generosity of these kids (and perhaps their families!)  The Pink Ribbon King Cake was delivered to the winning class the following week, and from what I hear, everyone enjoyed it.  Love this story.  :))))))

Thanks for reading.  Much, much more to come, as October was a busy month.  Can't put it all down in just one or two blog posts!

I am no wonder woman!

So much time has passed since updated my blog, I'm sure I'll be leaving some things out.  I foolishly thought I would write more frequently, having more to say, once I started back on chemo.  What was I thinking?!

I was NOT remembering how crazy the shop is in September & October.  And I was not realizing how much having to go for chemo once a week would take from our work time, and out of me.  And let's not forget it's football season and Danny is head coach of the KFL Junior Texans, which is like having a 15-20 hour per week part time job on top of his 50+ hour Pink Ribbon Shop workweek ... which means I am responsible for all the other kid-running, appointments, etc.  I AM TIRED!!

A little history from the past couple months ...
Like many chemo patients do, we ended up shaving my head once my hair started coming out in handfuls and combfuls.  It was so bad that at a windy high school football game one night, I really thought it was going to start blowing away!  Once I mentioned it, my David said "If that happens, you can wear my hat."  Such a sweetie!  My hair didn't blow away under the Friday night lights, but the continual shedding of hair just got to be gross.  Everywhere I looked, there was my hair.  After the shaving, it was pretty shocking.  Even though I had been through it before, and knew what to expect, it was hard seeing myself that way.  I looked like an alien.  I didn't care for wearing a wig the last time, and this time around I had decided to not waste my time and money getting one.  I was planning to "rock the bald look!"  But being bald has proved much, much harder this time around.  I have surprised myself by not handling it well.  At all!  Firstly, my head is small.  Proportionally too small for my body, I think.  Secondly, a few days after the shaving, my scalf developed an itchy, pimply, all-over rash that I couldn't possibly even think of baring in public.  I researched the issue online and diagnosed myself with folliculitis, a condition of the hair follicles that can occur with chemotherapy-induced hair loss.  My chemo nurse suggested I try some sort of exfoliative action with a washcloth and follow that with a mild moisturizer.  That didn't work at all.  Next I tried T-Gel therapeutic shampoo made by Neutrogena.  This was recommended by some forum writers, and it had evidently worked well for them.  T-Gel had an unusual scent that made me smell like I just visited the dog groomer's!  And it didn't work at all on my condition.  It was time to see a doctor.  My new oncologist at the MD Anderson Woodlands, Dr. Coscio, referred me to a MDA dermatologist.  Dr. Drucker prescribed Clindamycin solution and another, mousse-like med to apply to my scalp.  These have worked really well to clear up my rashy head(!) though not completely.  Sometimes I do feel up to "rockin the bald look," but it's still a little outside my comfort zone.  I find that if I wear a head wrap/scarf for any length of time, I get a headache.  Even with the soft cotton ones.  At home, work and in the car I usually go naked-headed.  My family doesn't mind, my coworkers understand, and in the car I feel somehow protected behind my sunglasses, as if no one can see my bald head while I'm driving!

Weirdly, I actually have new hair GROWING on my head!  It's not good hair ... it's sick chemo hair!  Very light and sparse fuzz.  (I asked Danny to please tell me if the fuzz is gray, as that would just cause me to lay down and die ... He was quite puzzled as to how that could bother me, considering I'm virtually bald, LOL.)  Anyway, some people have commented on the fact that I have hair that's growng, and I gotta admit, it's doggone strange, and I haven't had an explanation for it until I asked Dr. Drucker.  The derm doc says it's because the chemo only attacks hair at a particular stage in the growth cycle, and that it actually takes 3 months for the chemo to get it all.  I certainly don't remember that from last time.  I remember losing ALL my hair, all at once.  This time, I've had to shave my legs since starting (though I think that'll be the only time.)  And I still have most of my eyebrows and eyelashes, which helps me look less like a cancer patient by being able to wear mascara.  Scratch that, it makes me FEEL less like a cancer patient ... no matter what I do, I still LOOK like a cancer patient.

Also, I find myself obsessively shopping online for every head wrap, head scarf, bandana, and chemo hat known to womankind!  I've tried several styles and have found a favorite, but I don't feel really good in anything.  You just can't hide baldness ... without a wig ... which I am now considering getting.    I didn't think it would be this hard!  Perhaps my problem dealing with the hair loss is because of the distinct possibility that I will always be on some sort of chemotherapy.  That maybe my hair will never get to come back.  This chic who was planning to ROCK THE BALD LOOK is no wonder woman after all ...

Speaking of wonder woman, I'm discovering LOTS of ways that I am NOT her.  As I mentioned earlier, my life is not able to slow down.  Not sure if it's that or the chemo, but probably a combination of all things that are just wearing me out.  I am non-stop, early mornings to late nights, almost every day of the week.  Sometimes its just too much.  I take comfort in the fact that these things will pass.  If not, we'd have to hire more people at work and consider cutting back on some of our kids' commitments and activities.  It's just a rough time of year.  Breast cancer awareness month, football season (youth and high school games) plus chemo equals stress stress stress at both home and work.

Enough for now!  Gotta go get ready for tonight's events.  Thanks for reading.

Kim