The Pink Ribbon Shop Blog

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February 21, 2007

Tonight I've been reading some breast cancer related weblogs here and there.  There's really a lot out there!  Of course most of the others are more technologically advanced than this weblog (online journal, rather,) but hey it gets the word out.  All the reading of others' blogs have put me in the mood to write ...

So much sadness out there.  So many women going through what I am going through.  Too many!!  Although most blogging breast cancer patients are pretty upbeat and generally have a positive attitude (you have to, really, to get through it,) the whole thing is just plain sad.  No one should have to deal with cancer!  When will it all end??  I know that one day a cure will be found, but probably not soon enough to benefit me.  Well I guess it's possible, anything is possible, but it's not likely is all I'm saying.

Had my latest Zometa/Zolodex treatment last Thursday, 6 days ago.  This was the first time to try a 3-day course of Decadron day before, day of, and day after the treatment, in an attempt to quell the awful headache/nausea/vomiting events I've been having 2-3 days post treatment.  Dr. Green blames it all on the Zometa, although I've yet to find any information to shed light on the reasons for its yucky side effects.  It's not clear to me why she thought Decadron (dexamethasone) would prevent them, but it did!  No headache or nausea, but a couple of new symptoms of all-over-the-body tenderness to touch, even light touch, especially on my neck and chest area, and facial flushing/rosiness.  Also the usual joint achiness.  AND the Decadron's side effects were enough to make me rethink taking it next time around.  Bad and crazy dreams, insomnia, intense depression (including tears, a very rare occurrence for me!) for several days ... Weird stuff.  Perhaps I'd rather just be sick for a day!  I hate having to take meds to counteract another med's side effects.  I think it can get out of hand before you know it.  What, am I then going to need something to help with the side effects of the steroids??  I'm just not one for popping a pill for any little thing, so all of this cancer stuff is hard for me to swallow (figuratively, that is.)

Then yesterday, a full 12 days after my treatment, and my oldest daughter's 20th birthday no less, I had the severe headache & nausea thing happen that usually only happens 2-3 days after treatment.  You know it had to be bad that I cancelled her birthday get-together (it was just for family anyway) that was to include King Cake shipped here from New Orleans!

Who knows why it happened, but I do know that the headaches are worrying me to death.  Like so many others with metastatic breast cancer, I've become paranoid that every little ache and pain is the big "C," returning.  Of late, in addition to the headaches, are the rib tenderness (both sides) and continued mid-night right hip pain and ongoing sleep problems.  And did I mention the headaches?  I am going to call and have the doctor schedule me for some kind of scan of my head/brain.  Anything!  Just check it out!  I am already scheduled for the usual battery of blood work and scans for March 6th, so why not add the head?  After all, the lymph nodes in the neck and chest are just a hop, skip, and jump away from the head, right?

Have I mentioned that I am singing in the church choir now?  Crazy, I know, because I really can't sing.  I just LIKE to sing!  Especially praise music, contemporary Christian.  I figured, you only live once, and you should not put off things you've always wanted or wished you could do!

The next few days we'll be busy getting our house in order for Saturday's Crawfish Boil!  We are hosting it for our Sunday School Class and are really looking forward to it!  We love having people over and feeding them.  I guess you could say it's our "thing."

Oh I almost forgot to post an update on Amy (see previous post.)  She has recovered from her mastectomy and had her first chemo treatment last week.  It was tough on her, tougher than she expected, I think, but she is doing well, and even came to work today.  Which is also going great.  She's a fast learner and I hope she plans to stay with us a while!  Only 3 more treatments to go and she'll be done.  She had no lymph node involvement, so no radiation will be necessary after the chemo.  Yay for Amy!!!

January 23, 2007

I am just finishing my December 29th entry tonight, so the following two entries are both "new" to the weblog:

I want to share a story ... a few months ago, we asked Amy, a friend from church, to work with us at The Pink Ribbon Shop on a part-time basis.  She has 2 adorable little girls, ages 4 & 2, and she had quit working 3 years ago to be a full time mom.   Amy always has a smile on her face, and we thought she might like a flexible position (and we thought we would really like to have her!) at our family-friendly shop.  At first she declined, but eventually we talked about it some more, she stopped by and checked us out and she agreed to working one day a week.  

On her first day of work, we had the opportunity to talk at length, more than we ever had before.  She asked all about my cancer history and present treatments, and being the good listener that Amy is, she got quite an earful from me!  Not in a bad way, just basically my life history as it relates to breast cancer over the past 6 years.  :)  At the end of my very long-winded day, she told me that she had felt a lump and that she had a doctor's appointment for that afternoon to have it checked out!  I felt like a big weight had been thrown onto my chest!  I knew from experience that if the news wasn't good, her life was never to be the same!  I didn't want to think of a friend having to go through all that I had been through!  It was certainly no coincidence that Amy was placed into my life on that day!  All I could think was "God, please let it just be a cyst, not cancer."  But I had a bad feeling, just because of the circumstances of her coming to work that day.  I prayed, "God, if it IS cancer, please help me to be a blessing in Amy's life."  And also, I hoped that I hadn't told her anything that would scare or worry her any more than she already was.  She's only 32 ... the same age I was when I was first diagnosed almost 7 years before.

Since that first day, Amy's first (and only, thus far) day of "work" at The Pink Ribbon Shop, so much has happened.  The lump she felt was indeed cancer.  She's had surgery and more tests, and is to see an oncologist in the next couple of weeks.  Please keep Amy in your prayers.  Please keep ALL cancer patients and their families in your prayers.  It is a most difficult time, for sure, but with Faith in the Lord, and LOTS of prayer, you will get through it.

With Amy being newly diagnosed, and with so many "pink ribbon" items at my disposal, I wanted to give her something ... but what?  I chose Dr. Susan Love's Breast Book which Amy later described as the "What to Expect When You're Expecting" book for new breast cancer patients.  It is SO that!  I consider it an essential tool for arming yourself with the latest, most accurate, and comprehensive information out there.  I also gave her the book Praying Through Cancer, which I have already noted in this blog as being helpful and soothing to me during the treatments I am currently undergoing.  The power of prayer is amazing!  And since it was Christmas, I gave our "Faith Goes the Distance" ornament.

December 29, 2006

Whew!  Thank goodness the holiday season is almost over!  I apologize for not writing for over 2 months!!  I can't believe it's been so long, but The Pink Ribbon Shop has been so busy, plus I am continuing with treatments & tests at MD Anderson, plus we took a 10-day vacation, etc.  I am thankful to finally be able to catch my breath so I can clean up my house and catch up on paperwork at the shop.  I really do need more help in our office!  (seriously.)

Anyway, if you are on our mailing list, you have already received our holiday promotional email that contained the happy news that my recent battery of tests (including blood work; breast & lymph node ultrasound; chest, femur & pelvis x-rays; and CT scans of the chest, abdomen & pelvis) showed much improvement or "disappearance" of lesions previously seen.  The pleural effusion (fluid around the lung) on the left lung has "nearly completely resolved," the bone lesions previously noted on my sternum, femur, and spine are "healing", and the enlarged lymph nodes previously seen near the sternum and clavicle can no longer be seen!   

Also, my CA 27-29 levels are now 11, well within the normal range and significantly lower than the last time they were checked a couple of months ago (when it was 37)!  God has been so good, answering our prayers and providing me with his healing touch.  Evidently he wants me to stick around for at least a little longer!  My doctor, Dr. Green (at MD Anderson) was so thrilled, she was giddy!  The fact that my symptoms responded so quickly to the medications was a good sign, and we are hoping that this also means that the current treatment regimen will work for a very long time!  We were told from the beginning that, of course, there is no treatment for cancer, but that many people can "live with their cancer" (even stage IV!) for a long time with the array of treatments that are available now.  (I'll note that "a long time" is a very relative term when you're discussing life expectancy of a stage IV cancer patient ... but we won't even go there).  So far, so good!

A brief run-down of the last couple of months ... WORK, WORK, WORK!  The Pink Ribbon Shop has been in overdrive since mid-September.  We love it, but it gets to be very draining at this level of activity for months straight.  And stressful!  And detrimental to our family life!  But we were able to send a $5,000 check to The Cancer Association of Greater New Orleans.  Some of our checks have been used to fund research grants to Louisiana State University's Health Science Center's cancer research laboratory!  We are working to fund the cure!

We actually squeezed in a vacation over Thanksgiving, which was wonderful, but I don't think we'd do it again, not at that time of year.  It was really difficult to leave the Shop for 10 days!  Orders continued to be filled, but it was hard not being there and being so "uninvolved" for so long.  The Colorado Rocky Mountains were absolutely breathtaking, as I knew they would be.  It turned out to be the perfect week to go, with snow on the ground the whole time, but mild temperatures and no rain or snowfall during our stay.  And no crowds because it was the off-peak season for travel.  The kids enjoyed playing in the snow (we're from Louisiana and we've lived in Texas for the past year, so snow is a real treat for us!) and we did some hiking and even took a sleigh ride.  I'll have to post some pictures of my girls in their pink ribbon fleece!!

Unfortunately I have fallen very behind on accepting "survivor stories" for our online collection.  I feel terrible about this ... I feel like I am drifting somewhat from my goal/ambition to use my experiences to help others in the same situation.  My New Year's resolution is to keep up with that in 2007.  As I said before, I really do need more help!

October 17, 2006

A lot of ups and downs during the past few weeks.  I had a lingering achiness in my right hip since the last treatment.  It started waking me up at night, so I got worried.  Now, for the rest of my life I guess, any time I have pain or discomfort anywhere in my body, I am going to think it's the cancer returning or worsening.  What a way to live!  :(   Really though, what do you do about that?  I am only 38, so I guess I am just beginning to feel the aches and pains of just getting older, but what does an older person do?  How do you know if it's normal aging or more cancer?

Anyway, I decided to call my doctor because naturally I wanted it checked out, and she agreed.  She scheduled me for an x-ray of the pelvis and a CA27-29 blood level.  I have to say that I don't have much confidence in plain x-rays these days, after all the mis-diagnoses I've had this year!  I conveyed my misgivings to Dr. Green and she assured me that cancer is what these doctors have a trained eye for.  That's all they do.  And I'm going to have to trust them (she didn't say that, but I just know that).  I am putting my total trust in these experts at MD Anderson!

We were happy (and relieved) to find out that the x-rays showed no sign of cancer anywhere in the pelvis, AND the CA27-29 levels were even lower than before!  It's 37, now in the "normal" range of 0-39!!  She suspected, based on my symptoms, that it may be bursitis or some other kind of inflammation going on in my hip, and recommended that I take ibuprofen 800mg three times a day.  So I have been, religiously, and I do feel better!  I so hope they are right, and that there's no new metastatic cancer in my hip.  I would hate to find out later that it was there, just very early.  I seem to have a keen sense of what's going on in my body.  I've been right about everything so far, even before the doctors could pinpoint it, I knew something was up, I didn't feel right.  Hope it's just bursitis this time.

All of the other factors point toward disease regression ... "almost completely resolved pleural effusion (fluid around the lung)", no signs of cancerous lesions in the lung, no more pain in the femur or sternum, and steadily decreasing tumor marker levels in the blood.  So with all of these improvements, it would be odd to have a totally new lesion in a completely different place in the body, without having the other already-established areas worsening.

Another treatment Thursday of this week.  I can't believe how quickly the four weeks are up every time!  We've been so busy with The Pink Ribbon Shop, we're practically meeting ourselves coming and going.  Plus I've been just a little obsessed with decorating the house ... so even when I'm not busy, the wheels in my mind are turning, sometimes keeping me awake at night!  It's like the first time in my life that I've had a beautiful house and some extra money to decorate it like I want, and I'm really enjoying it!  I've pretty much got it all worked out of where everything will go and on what wall, etc, etc. ... now I just have to shop and buy those items.  I'm having a Southern Living at Home party on October 27th -- can't wait!   Love their stuff!   Hey it's good to get my mind off of cancer, isn't it??!!

(speaking of cancer ...)  Oh and by the way, I am reading this new book called Praying Through Cancer.  I'm not just trying to promote my website or products, but this is a really really good book for women going through cancer of any kind (many, but not all, of the women in the book have had breast cancer).  It's a 90-day devotional.  Each day's readings are very short, very readable, stories and anecdotes from women who've had cancer, have been through it all.  Following the short story, there's a simple prayer.  I have found these prayers so helpful.  I feel I need guidance as to what to pray, how to pray, as I am sure many people do.  They've helped me stay focused on Christ and all he's given and continues to give us, and not to dwell on our unfortunate human circumstances.  Then it references the bible verse on which the prayer is based, so if you wish to read more, there you go.  I highly recommend it.  Sadly, I rarely go to the Bible afterwards ... I've been so tired and worn out that lately it's all I can do to read the devotional.

September 28, 2006

My, how time passes ... almost an entire month since my last entry here.  Like I said, we try to keep busy, and this past month has been no exception.  We've visited family and friends in Louisiana again, and the Pink Ribbon Shop is in high gear in preparation for Breast Cancer Awareness Month - October.

Good news:  about two weeks after my first treatment, the pain I had been having in my leg and sternum, began to dissipate.  I noticed that I wasn't using ibuprofen or Tylenol as much as I had been in the past few months.  Actually, I didn't realize just how BAD I had been feeling lately, until there was improvement and I was feeling so GOOD.  It was SO WONDERFUL to think that the medications were already at work.  There was a definite and noticeable improvement in my symptoms, so even though there was no objective evidence like scans or lab work to review, we knew that something good was happening!  Prayers had been answered.  :)

I received my 2nd treatment at MD Anderson on Thursday, August 24th.  Based on the discomfort that occurred as a result of my first treatment, I decided that this time, I would prepare for it by taking ibuprofen prophylactically, and it seemed to help.  Of course my veins didn't cooperate for the needlestick for the infusion, but that's another story!  The hours and days followed this 2nd treatment were uneventful, nothing like the first treatment.  My doctor had told me that the first one might be tough, because of the "flare pain", and she was surely right.  This time, I had a little achiness in my joints following the treatment, but that was it.  Pretty mild.  Another one down!!  Who knows how many more to go ...

In preparation for my 3rd treatment, I was scheduled for blood work (more than was done before the 1st two treatments) and a chest x-ray.  Finally, I might have some objective findings of improvement to go along with my feeling so good!  And, I was finally going to see my doctor again, for only the 2nd time, which I can't say I felt too comfortable with, going so long without seeing her, that is.  I guess that's just the way the system operates, but I found it hard to remember how everything went and hard to remember everything I wanted to tell her and ask her and talk about with her.  Should have written it down, I know!

GREAT NEWS !!!  My chest x-ray showed that my pleural effusion had "almost completely resolved" and there was "no evidence of metastatic disease" in the lungs.  Wow, that was surely great news!  Additionally, my CA27-29 levels had decreased to what was still an elevated level, but down from the 1st time it was checked.  Needless to say, Danny and I were ecstatic.  We made a bunch of phone calls on the way home, just like we did with the bad news a few months ago, only it was happy happy happy news!  My doctor was very excited as well.  She had told me that sometimes it took 2-3 months to see any kind of response from these medications, that they were slow-working, very unlike chemotherapy.  So that I had responded in a matter of weeks was, well, just great!

I was able to remember almost everything I wanted to discuss with her ... I've been having a general achiness all over, like when I get up from sitting down for a while.  I told her I feel like an old lady!  She said that that was normal, an expected reaction from the medications.  Forgot to mention how bad I've been sleeping, but all she could do is prescribe a sleeping pill which I definitely don't want.  Also forgot to mention having really strange dreams lately, but again, what could she do about that.  It's not like I'm going to get off of any of the meds because of it!

She had recommended that I see an orthopedist at MD Anderson for evaluation of the lesion on my left femur.  I did, and he didn't think it was severe enough to warrant surgery, but he said I may want to consider radiation to that area.  He was supposed to refer me, but didn't, and I wasn't sure why, so I asked my doctor (Dr. Green) what the ortho guy had told her ...Dr. Green said that ortho didn't really think radiation was warranted anyway, and especially so now that I was feeling so much better.  In any event, Dr. Green referred me to a radiation oncologist who I am supposed to see next week, so we'll see what's up with that.  I would feel better having the radiation treatments.  It would make me feel like we're aggressively treating everything in every way we can.  But maybe that's just me.  I'll discuss with the experts.

The other thing I wanted to talk to Dr. Green about was all the yucky stuff Danny and I had been reading on the internet.  Yes, there's a lot of junk out there, and you can't believe everything you read.  But I don't frequent chat rooms or forums or anything like that, especially when I am searching for medical information.  What we found most interesting, and the most discouraging, was study results of the drug Femara.  Billed as some kind of breakthrough drug that was shown in clinical trials to significantly prolong the life of breast cancer patients, Femara was a new drug (a few years ago now) that was to be used in post-menopausal women with advanced breast cancer.  We were stunned to read about the "significant" results from the clinical trials.  I don't remember all of it exactly, but what I do remember is that the "average time to treatment failure" was 9 months!  9 months!  What kind of you-know-what is that???  That was the time, on average, that Femara stopped working, and the patient needed to go on chemotherapy.  And the average life expectancy was 3 years!!!  Talk about sucky statistics!!!  But Danny and I talked about it and concluded that, yes, that was bad, but the pool of patients in the study probably consisted of the very worse, very advanced, possibly very old patients, in addition to young 'ens like me who were still able to remain active and go on with daily living activities.  So hopefully the former would have skewed those results.  Also, patients tend to go on clinical trials who have tried all other treatment options without success.  And lastly, some of those patients may have not responded at all to the Femara.  So again, all of that would skew the results.  We brought this up to Dr. Green, and she said that in her experience, time to treatment "failure" was about 1 year or maybe a little less.  Very discouraging, indeed.  BUT, she did agree about the clinical trial patient population issue.  PLUS the fact that I responded to the medication, and so quickly, well ... it's all good.  I could definitely end up being in the positive end of those averages, when you consider all of those things.  And the more time that passes, the more new drugs and treatments will become available.  Time is my friend!  The longer I can keep this monster under control, the better.  Here's to positive thinking!

Next time, I'll talk about genetic counseling and genetic testing for the breast cancer genes (BRCA-1 & BRCA-2).

Thanks for listening!

Kim

September 3, 2006

Wow, I can't believe so much time has passed since I've weblogged!  Well here goes, I'll try to bring it up to date.

I received my first monthly "hormone" treatment at MD Anderson on Thursday, July 27th.  That statement usually is met with a little confusion from most people who are not educated on the latest breast cancer treatments (which is most people!).  The way I've been explaining it is that it's more like an "anti-hormone" treatment.  The cancer I have is estrogen-dependent, so by blocking all estrogen production in my body, the treatment is intended to basically starve the tumor(s).  That my cancer is "estrogen receptor positive" is a good thing ... there are more treatment options because of this.

My doctor has prescribed Zolodex, which is given as a once-a-month subcutaneous (sub-q, for short) injection.  Usually a sub-q injection is administered with a very tiny, small gauge needle into the fatty tissue like under the arm or in the abdomen.  So, being a nurse, I was happy to hear that it was "just a sub-q"!  BUT ... the needle was just huge, about a 16-gauge (which is about 3/32 inch).  AND, the medicine in the syringe was actually a pellet of some sort, not just liquid, and it was to do in the abdomen!   It scared me to death, but then again I am quite the wimp when it comes to needles.  Who likes needles, after all??  The nurse applied a topical anesthetic and left it on for about one hour before giving the injection.  When the time came for the injection, I decided NOT to watch (usually I watch all of my procedures, but this time I just couldn't bring myself to look) and Danny let me squeeze his hand.  And I have to say, scared as I was, it wasn't so bad!  Yay!

During the one hour wait for the topical anesthetic to take full effect, the nurse started an IV on me (more needles!!) and of course had to stick me twice, because the first attempt was unsuccessful.  Since I've had a mastectomy with removal of many lymph nodes (13 to be exact) on the left side, I've been instructed to avoid getting IV's or injuries to the left arm, because of the risk of developing lymphedema.  So I think the veins in my right arm have about had it, and are therefore not as cooperative with needles.  Then again some people just have "bad veins" and maybe I have some of that going on, too.  Anyway, Zometa, the bone-building medication that my doctor prescribed, was given through the IV and caused me no trouble at all during the infusion.

How different this "treatment" was from my chemo days when I was first diagnosed in 2000!  At MD Anderson's breast center, when you arrive for your treatment (which for some people of course it's chemotherapy), you're put into a mini-sized hospital room, complete with your own comfortable and multi-position-able bed, TV, and DVD player.  And if you bring a guest, they have their own comfy chair right next to your bed.  When I received chemotherapy 6 1/2 years ago, it was given at my oncologist's office, where all of the patients sat in a big circle, in recliners.  Everyone had their own IV pole, but other than that you just had each other to look at.  I got a lot of reading done during those days!  I guess the idea was that you could talk to other patients, which I did, but there wasn't enough room to bring anyone, like my husband or sister or mom.  And also, although they were all cancer patients, they weren't all breast cancer patients.  But moving on ... here I am in a little private room with my husband (or anyone I want to accompany me) and it's kind of nice.  Almost relaxing, were it not for the circumstances, because here we were alone, with no kids!  How often does THAT happen?  We were able to have some nice uninterrupted conversation and listen to the music of my choice, which on that day was Chris Tomlin's How Great Is Our God.  I thought it was a really nice set-up.

The rest of that day, I went about my usual activities and was feeling pretty good!  I'm thinking, this is great, definitely NOTHING like chemo was for me during my first encounter with breast cancer.

The next day, my period started!  I had a headache, which had become a normal thing in the past several months.  But I couldn't help thinking that maybe this would be my last period ever!  That sounded wonderful!

Later that day, I was out doing some afternoon shopping, and I started to feel achy, all over.  Like I imagine an old person might feel.  Every step, every movement became pained, especially in my joints.  My doctor had warned me of this, and she had called it "flare pain."  She said that it may feel like the pain in my bones (from the bone metastasis) was getting worse, when actually it was a good sign that the medication was doing its job and getting to where it needed to go.  Everywhere the cancer had metastasized, I hurt.  And also in every other bone and joint in my body!  And my "period" headache was horrible!  The literature that I was given about the medications I had taken the day before stated that I should take NO OVER-THE-COUNTER PAIN-RELIEVERS!!  They (the papers) were quite clear on this, very emphatic, in fact.  So I am wondering, well, what CAN I take?  By this time it was late Friday evening.  I called my doctor's office and got the answering service.  There was an emergency number, but to me, a little discomfort didn't really constitute an "emergency," so I didn't call it.  Don't want to be the pain-in-the-butt patient to call for that, you know?  I would learn to regret that decision!

Throughout the night, the pain intensified, plus I was nauseated and feeling like you know what.  At the earliest what I considered to be respectable time (still not wanting to be a pain), about 8:00 a.m., Saturday morning, I put a call in to the doctor through the "triage" nurse.  I explained my situation and waited.  And waited, and waited, and waited.  All I wanted to know was what I could do for the pain.  Please someone just tell me, give me something to go on.  SIX HOURS LATER ... I received a call from the doctor on call, who said, "Oh, I see you're not getting any chemotherapy or anything like that, so you can take anything for pain, nothing will affect your 'counts'"  I was SO MAD!  During the six hour wait, I contemplated taking some Tylenol or Advil, but the papers said not to, so I wasn't about to do anything that would adversely affect my treatment!  And then to find out I could have taken anything all the while, Oh I was aggravated.  Definitely something to take up with my doctor next time I saw her.  And 6 hours was just so excessive.  Next time, my pain will be an emergency, if that's how it's going to be ... very disappointing for MD Anderson.  I certainly expected better.  I took a prescription pain med that my surgeon prescribed after my recent biopsy surgery, got a few hours of sleep, and woke up feeling much much better.  At around 5:00 a.m., I cancelled my family day trip to Austin (which, for me to do, it had to be bad!), but finally, by Saturday afternoon, I was feeling back to normal.  "Normal" meaning that I still had the pain in my leg, sternum, and ribs, but it wasn't like the "flare pain" that I had apparently just experienced.

I got through it, and after it was all said and done, I decided that I could put up with that, easily, just once a month, especially knowing that I could take something for the pain.  Next time, I thought, I would take something like ibuprofen as a prophylactic.  Before my treatment and every 6-8 hours for the 2 days following the treatment.  I had a plan!  The next treatment was not going to whip my butt like the first one did!

I must say, though ... at least it wasn't as bad as chemo was, I kept telling myself.  I try to use that as much as I can ... the "it could always be worse" way of thinking.  I never gave breast cancer much thought, being only 32 and having virtually no family history or risk factors.  But once I was diagnosed, I was like, "Hey, lob that breast off, let's get rid of the cancer immediately, I don't need that stinkin breast anyway!"  I used to think, in the years before my diagnosis, that having cancer that has spread to the lymph nodes basically meant that you were a goner.  It was all downhill from there.  But once it was ME, well I thought okay, positive lymph nodes, that's not so bad, I'll get chemo, radiation, and whatever else they want to give me, and I'll be done with cancer, hopefully forever.  Just get me through, Lord, and I'll be great, really, I can do this.  It could always be worse ... at least it wasn't in any other organs or bones.  THAT would be the kiss of death, stage IV cancer.

Well now it's here, stage IV, in the femur, sternum, spine, lung, and more lymph nodes.  I can't believe it's me.  I used to think, before it was me, that people with stage IV cancer were bald, emaciated, bed-ridden souls who were destined to die and probably sooner than later.  I am so NOT that soul, that sometimes I have a hard time believing it myself that I have stage IV breast cancer.  Now I'm telling Danny, "Well at least it's not in the liver or abdomen."  Surely that would be the end time.  You can't live without your liver functioning, right?

For now, I am alive and well, and am living life as best I can, as close to normalcy as I can.  Although everything has changed.  We are trying to do things and accomplish things that we thought we had the rest of our lives to do.  Like finishing up the photo album project.  Decorating my dream house the way I've always dreamed of doing.  Vacations, going to places and seeing things that I've always wanted to see.  Trying to leave pieces of me for all the kids to remember me with.  Spending time with the kids, sometimes individually, so they can get to know me better.  My sister-in-law told me that because of our situation, they are examining their lives as well.  Thinking that maybe everyone should live like that.  Like the song, live like you were dying.  Don't wait ... because you never know when you'll be plucked from this earth.  It could be tomorrow, it could be many years from now.

Who knows what I'll say if the cancer ever spreads to my liver.  At some point, I suppose it will get harder and harder to say "it could always be worse ..."

But I'll try!

August 14, 2006

Here is a link for a sneak peek at our e-mail scheduled to go out tomorrow at 10:00 a.m: August, 2006 e-mail.

July 29, 2006

Kim is in bed sick this morning.  We had to cancel our trip to Austin.  Our young girls, for some unknown reason, really want to see the State Capitol.  Kim has a slight fever, nausea, and bone and joint pain, all side effects of the medications she is on.  We spent this Thursday at M.D. Anderson where she was given her first of what will be a monthly treatment.

She had an injection of Zoladex under her skin.  She was happy to hear that it was subcutaneous and thought it shouldn't hurt much.  It turned out that Zoladex is a solid and not a liquid.  The needle was huge.  I don't ever have a problem with needles but I have to admit I would have been scared of that thing, especially with the injection site being the stomach.  The doctor prescribed a topical pain killer that was applied to the injection site about 30 minutes before the injection.  It had to work some because I was holding her hand and she didn't seem to flinch or squeeze as much as she should have.

Zoladex is a once a month treatment that will stop Kim's ovaries from producing estrogen and should put her into sudden menopause.  If it is effective at stopping her cancer from growing, she will get it every month.  It will take about three months to determine whether it is working or not.  It is a slower process than chemotherapy.  Even if it does work initially, we are told that it will eventually lose it's effectiveness and she will then have to try some other types of treatments.

She was also given an IV of her first monthly treatment of Zometa (we have been trying different memory tricks to keep those two straight).  Zometa will help her bones heal where the cancer has created holes.  It will also counteract the effects of osteoporosis caused by her chemically induced menopause.

"Zoladex, you know, like rolodex."  

"What does that have to do with estrogen and ovaries?"

"I don't know.  Hey I had an Aunt Meta...  ...just like Zometa."

"I don't see the connection."

"Yea, neither do I."

She will also begin taking Femara on Thursday.  It's a once daily pill that will stop her body from creating estrogen from other sources.  

We are hopeful and confident that the pain she is in right now is because her body is healing.  We are still not sure if this will happen every month or if this is because it is her first treatment.  She was fine Thursday and all day yesterday.  She started having a little discomfort last night and now this morning it seems to have finally caught up with her.

If we had been born in the 1800's instead of the 1900's, six years ago, Kim would have just gotten progressively sicker and died.  I would have been a 31 year-old single father with two daughters that I wouldn't quite know how to raise.  Instead, God put us here at this time where we have already been given an extra six years and a son.  He has also placed us close to M.D. Anderson where Kim can be given the best treatment available by the best doctors available with medications we are not even sure how to pronounce much less keep straight in our heads.

Every day is a gift.  Every kiss, every hug is a gift.  Every moment I spend with Kim is a gift.  Since Tuesday, I have been fully aware of this.  Don't let a day go by.  Don't let a moment go by without appreciating what you have.  Life is short.  Take what God has given you and hold it close to you.  Because one day it won't be there anymore.

July 26, 2006

I was sent this by a friend:

Let us hold unswervingly to the hope we profess, for He who promised is faithful. Hebrews 10:23 

I think our tenacity to hold onto God's promises instead of the "facts" is the most important key. 

July 19, 2006

Hello all ... I emailed a very good nurse friend of mine last week.  She wanted to know details, so I gave her a detailed synopsis of the development of my latest breast cancer recurrence.  I thought it would be good to include it here, for those of you who perhaps have not been following along from the beginning (if you have, please skip down).

Okay ... remember the lump I found back in December that we thought was cancer and they said that it wasn't?  Well a few weeks ago my oncologist decided to surgically biopsy it because he didn't like the look of it (it had grown, and there was some discoloration visible just under the skin), and it turned out to be cancer.  The margins were technically "clear", but the pathologist said that the superior (upper) edge of the specimen was "close".  The surgeon wanted to go back in and remove more tissue, superiorly, but I decided to wait and see what MD Anderson has to say.  Unfortunately they couldn't see me for 3 weeks, which has been excruciating, my appointment is on July 18.  All my labs (liver, blood counts, and tumor markers) were perfectly normal.  I've not been happy with my oncologist since moving here (to the Houston area) -- he doesn't take me seriously and is quick to discount me and basically blow me off.  So of course this is the last straw, and believe me, I have anger issues, now that I know that this was misdiagnosed since January by not only my oncologist, but by a "breast specialty center" whose highly recommended doctor personally ultrasounded the lump and reported that it was just a cyst and nothing to worry about and that she didn't even recommend biopsy, so sure was she that it wasn't cancer.  AND,  back in January I was also having pain just to the left of my sternum, which is exactly where my original cancer was, so I was very concerned about that as well the new lump which was at the mastectomy/reconstruction scar.  So the oncologist ordered a bone scan which showed nothing at the sternum but showed something on my femur! suspicious of bone metastasis.  I had no symptoms in my leg, so I was quite shocked about that!  Then they did an MRI on the leg which also showed "something", also noted by the radiologist as being suspicious of malignancy.  PET scan of the whole body showed nothing on the leg -- so it was decided that no, it wasn't cancer, but no one could tell me what it was.  I went to see an orthopedist, but he told me that he was "not too good at reading MRIs"  (!) and did a plain x-ray (high tech kind of guy, huh?) which again showed "something", but he said it wasn't cancer, but really didn't know what it was!  But the PET scan also showed nothing in the area of what we now know IS cancer (the lump at the scar).  The sternum and some ribs showed up on PET scan, but at the time it was felt that it was somehow related to inflammation or radiation to that area.  (oh and also increased intensity at the esophagus ... colonoscopy and EGD showed GERD and mild hiatal hernia, of which I had no symptoms whatsoever).  Am I a mess, or what???   Soooooooo ...... now I am left with nothing but more questions, and I am basically questioning everything I was told in January.  I wonder if anyone knew anything of what they were talking about.  And now I have pain in that left leg, which worries me.  So I'm off to MD Anderson for evaluation of course, but also a repeat of all the usual battery of tests ... mammo, US, bone scan, CT's, whatever they want to do to me, because I just want some definitive answers.  It's been crazy!  ...  So I just can't wait to get some answers and move on.  The surgeon thinks I'll probably get chemo again, which is fine, that's not so bad.  Heck, if I have to get that every 6 years to stay alive, I'll do it.

So there you have it, sorry that it's a bit long, but it's about as compact as I could make it without sacrificing pertinent facts.

This week was THE week, when my appointment at MD Anderson (MDA) finally came to be!  What a huge place it is!  But very organized.  And everyone there was very friendly, and even technicians knew of my pertinent medical history.  I remain impressed!

July 10, 2006

The three week wait between when I was told I had recurrent breast cancer and my appointment at MD Anderson, on July 18th, has been truly excruciating!  I am busying myself with trying to attain "normalcy" in my life and my family's, which at this time in my life, has fortunately not been that hard to do.  We're just so busy ... the kids are out of school for the summer and I've done my best to keep them active and entertained and their schedules full, but with plenty of unstructured "play" time as well.  

We've just moved into a new home and are still unpacking and organizing non-essentials.  Trying also to catch up at The Pink Ribbon Shop ... with the move and all, the PRS has been somewhat neglected in the past couple of months.  The mini-vacation we talked about earlier, well, now we feel like we definitely should take, because who knows where the next few months will take us.  You can't help think that way when you've just been told that your cancer is back!  And now, this week, the ultimate distraction from thinking about breast cancer ... my first grandson, Jacob Tyler, was born!  

I am way too young to have a grandchild!  But he is beautiful, and I am so thankful that my daughter and son-in-law decided to move here to Texas a few months ago.  They had been displaced for many months because of  Hurricane Katrina, staying with various family members, until finally they made the decision to move nearer to family (us!) and to a more family friendly area with a great economy and little crime.  I digress ... but it's nice to not think about cancer for a while!

So far I have been very impressed with MD Anderson, and I haven't even been there yet.  As a new patient, I have one person assigned to put my "file" together, a case worker, so to speak, although I don't know what his actual title is.  This one person is in charge of making sure all of my past records make it to their facility.  He is knowledgeable with all the medical terminology as it relates to my diagnosis and to exactly which records they'll need in order to provide comprehensive treatment.  

Of course, I had work to do to gather all of the necessary information, but I can't tell you how good it feels to have someone working with me on all of this.  My current oncologist (well, now former oncologist) just never grasped my big picture.  I found myself having to remind him of various aspects of my condition and treatments.  Very sad, and of course I simply had no confidence in his ability to thoroughly manage my care.  

MD Anderson is even requesting my pathology tissue samples! from my original biopsy and mastectomy from 2000.  I am thinking that finally, someone will look at my entire history and really get to know my case!  Maybe I'll get some answers instead of just a shoulder shrug and a "hmm, we don't know what that is, but it's not cancer". (I am referring to the something that showed up in January on my left femur on both a bone scan and MRI, but not a PET scan -- for that matter, the lump we now know IS cancer on my left breast did not show up on that same PET scan).  It all has really made me wonder if any of what I've been told this year is accurate!

Here's hoping that MD Anderson lives up to my expectations ... and "cures" me of breast cancer for at least another 6 years!!

June 28, 2006

Two or three days before Monday's news I had started to read a book called The Rest of God by Mark Buchanan.  In it, he discusses the circumstances we find ourselves in through daily life and how we see our circumstances compared to how God sees them.  Buchanan's words came back to my mind while talking to a neighbor yesterday.  

"We won't change our minds, won't revise our attitudes, until someone--God, a parent, a boss, a spouse, a child, a coworker--changes our circumstances.  We refuse to budge until someone moves a mountain.  Our lives shuttle between an alteration of if only, what if, and as soon as:  If only I had more money.  As soon as I get a different job.  What if my husband loved me more?  If only my child wasn't rebellious . . . As soon as . . . What if . . .

But this is not how God works.

This is:  'Be transformed by the renewing of your mind'; 'Be made new in the attitude of your minds' (Romans 12:2; Ephesians 4:23).

Under God's economy, nothing really changes until our minds do.  Transformation is the fruit of a changed outlook.  First our minds are renewed, and then we are transformed, and then everything is different, even if it stays the same.

God is more interested in changing your thinking than in changing your circumstances.  He wants you to have the same attitude as and the very mind of Jesus Christ (see Phil. 2:5-8).  To pull that off is a miracle larger than splitting oceans or tossing mountains into them.  It is akin to raising the dead.  Yet this is the daily occupation of the Spirit--leading us into all truth, reminding us of the things Christ taught, taking the things of Christ and making them known to us again.  And this is the one area above all where we are urged to keep in step with the Spirit--to move in the direction He's moving so that, seeing differently, we are free to live differently (see Gal. 5:22-25)."  

The Rest of God by Mark Buchanan.

The questions yesterday were, Why me?  Why now?  If everything happens for a reason, what possible reason could this be happening again?  Why was this mis-diagnosed in January?

I find some answers to these questions in Mark Buchanan's words, "God is more interested in changing your thinking than in changing your circumstances."

In the big picture of life, eternal life, our circumstances here on earth are of very little consequence.  Jesus has won our souls and has paid the price for our lives so that if we accept Him we will belong to Him and have eternal life.

Sometimes its hard to stay focused on this fact and trust that you are in God's hands and that He is continually shaping you in his image.  Unfortunately sin has made this process difficult and painful and we won't fully achieve holiness here on earth.  But it is one of the great things we have to look forward to and maybe just for a moment here on earth we can rest in His peace.

June 26, 2006

I've been on the phone most of the afternoon having to tell the same story to everyone I know.  I'll just copy and paste what I wrote to a friend tonight.

I just found out some bad news today.  The breast cancer has returned, to the same side.  Long story, but it's the same lump that was pronounced "benign" by more than two physicians in January that is now "recurrent cancer."  I just read last night that the chances of recurrence on the same side after having a mastectomy are 1%.  I'm in that unlucky 1%!  

I have an appointment to see a doctor at MD Anderson on July 18th, and that's where I'll get all my treatment from here on out.  Thankfully we're here, near Houston and one of the best places in the world to receive cancer treatment.  Maybe that was all in the plan, who knows.  I am thinking positively that it's contained in just the lump and it's very treatable, again.  

We don't have the pathology report yet from Friday's biopsy, just a verbal report from the pathologist that it's cancer.  Keep us in your prayers, I'm sure I'll be fine though.  Heck, if I have to have chemo every 6 years, that's not too bad!

June 23, 2006

Wow!  What a month we have had.  We are finally moved into our new place and are really happy with our home.  We had no idea the move would take so much of our time.  Within the last year we have moved our shop twice and our home twice and have help other family members flee New Orleans for Houston.  This has truly been the year of moving for us and we hope we won't have to do it again for a long time.

We also have lots of new products ready to be introduced on our site.  Hopefully we can get the pictures ready and the product pages up sometime in July.

The one thing that could slow us down is the lump in my breast.  Last week we went to my oncologist and he was bothered that the lump has moved closer to the surface and has some discoloration.  He wanted it removed, which was done this morning.

I've lost count of how many surgeries this makes, and it's getting a little old.  We won't have any results of the biopsy until Wednesday.  It's hard to even think about what we will do if it's cancer again.  

It's all just very tiring.  I just wanted to post a little update before I go to sleep.  Thanks for reading.

May 6, 2006

We continue to go through our old survivor stories from our old site.  Here is a "story" from 2002 that we thought would fit better here.  By the way, we can still get the Avon candles every once in awhile.  It's as if Avon finds some more in a warehouse somewhere.  We just recently had them but are now out again.  It was one of our first products back in 2001 and the scent still reminds us of our early days filling orders on our kitchen table!

Here's Debbie:

I am a 4 year survivor and I too reacted to the news in a similar style, except that I started a support group for women with breast cancer as there was not one available in my area just for Breast cancer. I have met the most wonderful people and made more special friends that are now like sisters. We also want to spread the word about the importance of early detection.  We are called 'The Circle of Friends' and have become a very active group, participating in the American Cancer Society (ACS) Relay for Life and Susan G. Komen Race for the Cure, as well as being trained as Reach to Recovery volunteers for the ACS. 

Isn't it amazing how something we once thought of as the most horrible thing that we could face, God can use to energize and enrich our lives and change our thinking about so many aspects of life. WOW!! I too LOVE pink ribbon products, because they open many conversations about breast cancer with almost anyone you meet, and stand as a symbol of the circle of love, hope, growth, and fulfillment that we women find ourselves in when we belong to a 'sisterhood of breast cancer Survivors and Supporters'. 

I wouldn't change the events that brought me to this place in my life for anything because God has truly blessed me in ways I never imagined.  I love my Circle of Friends and  wish the same kind of friendships for each and every woman who has to accept the diagnosis of breast cancer, and pray that god blesses them with the love of a husband, family and friends that he gave me, and the courage to move past the diagnosis toward reconciliation and recovery. 

I congratulate you on using your experience to help others, with The Pink Ribbon Shop, and especially for appealing to the feminine side of us gals with unique, pretty accessories and products that proudly bear our victory symbol, our PINK Ribbon of Hope!!  

I would love to see if you could locate an item similar to the Pink Ribbon Candle that Avon carried, but has recently discontinued. My friends and I just loved those candles for our homes as well as gifts for those special in our lives, and I am so disappointed that we can't get them anymore. We have a 30 year survivor in our group that is an Avon representative and that is how I found out that they were unavailable. I hope you can find something in a pretty candle to add to your line. And I encourage all women to get involved in some aspect of spreading awareness of the importance of early detection and treatment of breast cancer, including self exams for younger women and teens. 

One of my favorite quotes is "In order to succeed ( in anything- even Breast Cancer..my words) you must lose yourself in something bigger than yourself." Getting involved helps make it just a little bit easier for those women who are sitting in a doctor's office today, hearing the 'news, and those waiting frantically by the phone for a call. We all have been there; we know; and there are so many ways a survivor can volunteer, or do something to help. 

God Bless you for what you have done and are continuing to do, and May God continue to bless all of the thoughtful people who have taken time to write and offer encouragement and comfort. My two favorite scriptures are Jeremiah 29:11 and 1 Thessalonians 3:10. 

In His grip, 
Debbie

"For I know the plans I have for you." declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Night and day we pray most earnestly that we may see you again and supply what is lacking in your faith. 1 Thessalonians 3:10

May 1, 2006

There is still time to shop on-line for Mother's Day.  We are currently offering free UPS 3 day select shipping on U.S. orders over $75.00.  We have also finally gotten our new book Dancing With Fear available for purchase.

Also, if you haven't received our latest e-mail, you can see it on-line here: http://www.pinkribbonshop.com/06-may.htm

April 27, 2006

Here is a letter from Janet:

Here is an e-mail we received without a name:

April 26, 2006

We heard back from Carlottra:

Thanks again, you made our day!

Here is a letter from Walterene:

My name is Walterene and I was diagnosed January of 1998 with Breast Cancer. At the time my daughters were 17 and 4. I went through a Mastectomy, Chemo and Radiation.  I then went through my remission stage. Then on September 18, 2003 (just 10 days before my birthday) I was diagnosed with Metastatic Breast Cancer and was told at the time that I would live at best 3-6 years. 

By this time I had another daughter who was at the time 3 years old. Since that time I have been on and off Chemotherapy. I know it is as hard on my family as it is on me. So far I have attended the funeral of a dear friend who was buried on my past birthday (September 28, 2005) and now have a current friend with advanced Lung Cancer and is in the hospital after suffering a stroke.

At times I wonder who is really the lucky one here. Those who have passed on as they are no longer in pain or myself who is still here dealing with the various side effects of the chemotherapy and the emotional state of mind it can put me in. But when I start thinking about that I think of my children and that brings me back to a happy train of thought.

As of this September 18th I will have survived 3 years so far and I am determined to keep on going!!!!!!!

Thank you for sharing your story. Wow, you've really had a rough time of it. I, too, had a baby (a boy, after 3 girls! :) after breast cancer, though no recurrence as of today, 6 years later. My heart and prayers go out to you during your ongoing treatment and struggle with cancer. You have a lot to live for, so keep your head up and your prayers flowing. May you have many years ahead as a survivor!

April 25, 2006

Here is a letter from Danielle:

My story is of my mom surviving breast cancer. I'm currently going to school for massage therapy and one night I gave my mom a massage over her chest and I found a lump. She had it biopsied. It came back benign but she needed to have it removed because it grew within a couple weeks.

So she had it removed and the doctors did a 24 hr culture and the results came back that there was cancer cells in the tissue. The lump was benign but the doctors told my mom that if she would've let it go for 6 months to 3 years she would've been completely full of cancer. 

In light of the finding of breast cancer my parents are promoting a Breast Cancer Awareness Fun Run for motorcycles and antique cars to ride in. The money is going to the pink ribbon fund & sponsors. The date is set for June 17th, 2006. Thanks for taking the time to read my story. My mom's name is Dawn and I'm her daughter Danielle.

Thanks for sharing your mom's story.  The Lord works in mysterious ways ... it's no accident that you found that lump in such an unusual way! May she have many years ahead as a survivor!

Good luck with your fundraising event!

Here is a letter from Jean:

April 20, 2006

We added 13 new products to our site.  If you didn't get the e-mail you can read it here: http://www.pinkribbonshop.com/06-april.htm

We got an e-mail earlier this month from DJ.  She walked the Chicago Breast Cancer 3-Day last year and lost her toenail (admittedly due to lack of training) in honor of her lifetime best friend Kelly and Kelly's sister Karen. Both two-time survivors.  She also started a website about her 3-day walk, training and even her toenails.  If you are planning to do a 3-Day walk this spring, you might find DJ's website interesting and entertaining.

We also received and e-mail from Dionne.  She is a 4x survivor from Canada and is also raising money for research.  Her site is CancerSurvivorInTheCity.com be sure to read her story and checkout her products under "Survivor Souvenirs."  

Last to post today is an e-mail from Carlottra:

P.S.  We haven't received our "Dancing With Fear" books yet.  They are coming from Canada.  We will make them available on our site as soon as they arrive.

April 13, 2006

We have been working on a number of new products for our site.  It looks like we will be adding about 12 to 13 next week.  We have been able to obtain a few products you may have seen before by designer Sandra Magsamen  seen below along with "Hannabell" the angel.

The plaque on the right also comes with the words, "Hope" and "Strength."  

We also have two new books we are excited to be adding to our new book selection.   We will have, "Dancing With Fear," a book written entirely by breast cancer survivors.  125 women share their real-life experience through treatments, recovery, aftermath, and reclaiming life after breast cancer.  This 223 page book is a must read for anyone currently dealing with breast cancer either personally or helping a friend or loved one.  We hope we ordered enough!

We also have a Cookbook with a nice variety of favorite recipes followed by a collection of survivor stories and poems. Makes a great gift for your favorite breast cancer survivor who loves to be in the kitchen.

We were encouraged this week by Joyce.  She writes:

Hi, Kim

My Mom had breast cancer – in the ‘60’s – she had a radical mastectomy. She noticed a lump & told her "then" Doctor a couple of years before her surgery - you know what his response was?..."'you women are all the same, you all think you have cancer'"  - can you believe that??!!  I wish he were alive now - I'd give him a piece of my mind besides wanting to bring him up on charges of malpractice. She has since passed away (in 2001 on her birthday no less - age 80/81) –  although not from cancer. I faithfully go each year for my mammogram!

What a fantastic way to “get the word out” about cancer with The Pink Ribbon Shop!  Congratulations on beginning it.  I came across the site as a result of a woman in Ohio who made baby bibs, posted a picture of it on Smart Needle website & had her web address listed with the picture.  On her web address (www.mjstitch4u.com) she had written about having some of her products in your store.  So – you see with just that original posting, I found your site!

I am a crafter in MA (in business for 4 years now) – primarily pillows of all kinds, totes, purses, home décor. While living in Las Vegas last year, I donated pillows to the American Cancer Society for one of their annual runs as I felt it is a very worthy cause. 

I have a website as well – www.pleasingpillows-plus.com – my husband & I are in the process of finalizing it.

I wish you continued success, Kim,  and hope your battle against cancer continues to be a very victorious one! 

PS - I read parts of "Danny's story" - I must admit I couldn't make it through the whole story - tears welling up in my eyes.... but I did read you made it thru the chemo & went on to have a healthy baby boy later on!  Congratulations to you & your family!!!

Sincerely,

Joyce

April 12, 2006

We posted Nancy's breast cancer survivor story.  Here she writes back:

We also posted Leitha's breast cancer survivor story.  And she wrote back also:

April 5, 2006