Posts Tagged ‘cancer comments’

10 days later and the truck is still parked on my chest

June 26, 2010

or at least that is what it feels like 10 days out from the TRAM FLAP surgery.  I might add that it is not exactly uncomfortable, not really even painful, just a lot of pressure.  Really, really tight skin which makes me hunch over.  Hunching over without the support of the walker causes significant lower back pain.  So.  I use the walker…not really to walk, but to prevent back pain and support the front side.  I don’t want to sound like I am complaining, because, truly, I have it pretty good.

It’s good to be alive even if I am bored with convalescing already.

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new adventures

June 21, 2010

got three tubes removed from my body!!  i’ll spare you the gross details, but i have just three tubes left….may have them removed tomorrow if I am a very good patient.  Dr. B came in tonight and wants more movement and weaning off the Fentinol pump.  Still will have pain meds orally.

Today I had the big adventure of walking very slowly to the bathroom not once, but twice!  Both ventures resulted in a trip down nausea lane.  got more meds and just waited for the room to stop spinning.  It was no fun!  This is why I was never a big drinker when I was younger…..just feeling nauseated makes me a big crybaby. 

Lucky for me though, had a great nurse, Cindy.  Took a lot of time with me.  Some of these nurses are really so patient and kind.

Success with chemo #2

July 16, 2009

Just a quick post here: I got lucky today, and was able to get chemotherapy #2 today!  It came with a bit of a price though…had to endure another sudden and dramatic reaction to the drugs.  I’ll explain  more in the next post.  I’m actuallly tired and going to lay down and maybe I’ll be lucky and sleep will come to me

A big disappointment

July 9, 2009

Well today was supposed to be chemo #2 day.  I had even planned a party tomorrow to celebrate being halfway through “the treatment”.  But no, it was not to be.  I am so disappointed, I can’t even begin to tell you.

My day began with a consultation with the most excellent Physcial Therapist, Peeta.  She is very good, and shortly after beginning my treatment she looked at my chest, specifically the right breast and asked, “why is half of your breast red?  I think you have an infection.”  I felt alarmed and crestfallen all at once.  The right breast is the one with the expander implant in place and had just been expanded yesterday by my plastic surgeon.  Awww jeez…and the expansion was not even that uncomfortable yesterday like in previous visits.  How could it be infected?  Anyways, Peeta completed her PT, gave me a prescription for a compression sleeve to relieve some of the discomfort of the left arm where all the lymph nodes were removed, and sent me on my way, with instructions to show this condition to Dr. Schott, the oncologist.

Both Dr. Schott and her nurse practioner Joan were not in today, so I had a new and diligent NP, Tammy, who took one look at the right breast and pretty clearly said she did not want to take a chance at chemotherapy with even a small potential of an infection.  I kind of whined about it, and she asked if it was OK to pull another Dr. in to examine my breast.  Hell, I would let the janitor take a peek if he would have said, “Nah…it’s OK!”  So of course I said YES, YES bring another doctor in.  It took what seemed like a very long time…… I laid there on the table and tried not to cry,  tried not to feel sorry for myself, but I felt overwhelmingly sad.  Eventually a  great big Doctor came in, took one look at what honestly is a very light shade of pink on one half of the breast only, from the vertical scar to the center of the chest, and he quickly said, “no, I don’t think you should do chemo today.”   They explained that it was probably only a very slight risk of infection, but if it was an infection having to do anything with the expander implant, then undergoing chemotherapy at that time would only increase the chance of losing the expander implant.  After all the work and energy that has been put into that side of reconstruction, it would be a shame to lose it, and go back to square one.  They gave me a prescription for antibiotics, and sent me to reschedule all the rest of my my chemo appts.

Of course.  They are right.  I know they are “erring on the side of caution”.  But another week of delay means another week of missed work.  Another week further away from being done with chemo.  Another week delay of getting some sembelence of my life back. 

But I think they are right.  But I am so sadly disappointed.  I have been looking forward to this day so much.  It takes so much energy to plan for chemo, to be “up” for chemo, only to have it taken away.  At the end of today, I was going to be halfway done, and now I have to wait another week.  And I know it is the right thing to do as I write through my tears.  I wish I were mature enough to accept this today, but as with the other difficult things I have experienced lately, I guess it will take a day before I straighten up and stop whining about it.  :^(

Nine Days after chemo and all’s well…………

June 27, 2009

Well,….all’s well physically anyways.  I am out of the achy and shaky part of the experience for this round of chemotherapy, and all I have is still a bit of  fatigue and a yucky taste in my mouth.  As long as I don’t try to do much, I am pretty good for about 5 hours of light activity before I have to lay down and chill-out.  I seem to be past the “be careful to monitor every stinkin’ little physical symptom”  state of mind, thank goodness. 

On Friday afternoon, Joan, my U of M nurse practitioner called to see how I was doing and explained a few things.  The reason the achiness was so intense is because you begin chemotherapy with nice and healthy bone marrow.  The action of chemo destroys some of your dividing cells of the bone marrow and to go from healthy to “compromised” is dramatic and significant  for your body.  Typically, in subsequent infusions the severity of the achiness should be slightly less, but may last for a few hours or days longer.  The fatigue, however, is just what it is.  It will probably get worse, last longer with each infusion. 

It has been challenging to find a place to remain “grounded”.  I mean, to constantly be focused upon your every physical sensation, monitor it, evaluate it and act…..whether the action be stop activity and lay down, feel discomfort and decide if it warrants medication, or take a run through the Internet to ferret out an answer.  At the same time, try to be a “mom”.  Of course, something will suffer, and I know that I am pretty weak on fulfilling the mom duties.  :^(     I seem to have zero patience for whining and fighting and fussing.  I mean it.  I wish I could ignore it better.  In fact, I probably make it worse, by my actions I’m sure.  Nothing to be proud of, that’s for sure.

Of course, the whole uncomfortable, tight, lopsided, short of skin and not too attractive chest is still part of my life.  The area under both arms is still really uncomfortable by the middle to end of each day, and I have to try to put it out of my mind at times.   I think I need to do more research on the “neuropathy” issue.  If I understand it on  a cellular level, I seem to deal with it better.  But damn, it can get so annoying on some nights………I get agitated quickly and go straight to the meds.  I don’t think this is the best way to deal with it though.  Fortunately, on July 9th (my next chemo day) I have an appointment with a Physical Therapist who works with a lot of Breast Cancer and Lymphadema patients.  Maybe she will have some great exercises for me to relieve this kind of chronic discomfort.  I wish I had learned Transcendental Meditation years ago when I tried so desparately to incorporate that into my life.  I wish I could just mentally take my brain to a higher level where physical discomfort…….isn’t so annoying.  I’m sure it is possible, I just don’t know how to do it.  Plus, I am impatient.  I want physical enlightenment now.

Now that I have done all this whining, my mind jumps to really how lucky I am.  Really.  I could have it so much worse.  I seem to be holding up under this gradual poisoning pretty well (so far).  I’m so grateful for not having any nausea.  I’ve made deals with my body to promise to rest when I am tired if we can skip the whole puking part of chemo.  So far, that has been a successful strategy.

I am also incredibly grateful for my friends who I have come to think of as my “new family”.  I couldn’t do this without all of the people who have brought food, called, helped with the kids, sent e-mails and snail mail and little “care packages”.  Both Lou and I are so grateful for all of the support.  I wish I could come up with the words that adequately express  my gratitude.  I appreciate you and love you all so much. 

 

A whole new day

June 5, 2009

Wow….life has been ticking away at quite a quick little clip that I haven’t had a chance to post any comments…and things have been looking up, too.  I think the last thing I wrote was some silly little wishy-washy-worry-wort mess.  

Since last Friday when I was concerned that I had made too quick of a decision on treatment options post-mastectomy, I have worked the phones quite a bit, talked to lots of Doctors, Nurses, insurance people, and schedulers, and now I have an appointment at University of Michigan next Tuesday for an evaluation/second opinion on treatment options for BC post-surgery.  This, I am extremely happy about!  

And to think, all of this has been driven by the lowly “arm-port”.   The “port” is the delivery system by which one receives the poison that is known as chemotherapy.  And the mix of caustic drugs is best delivered directly into the superior vena cava, the biggest vein going into the heart, where the drugs are swooshed around and diluted with a bunch of other blood  before it is delivered to the arteries and then out into the the rest of the body to look for any cell that might be dividing…..like hair cells, fingernail cells, skin cells, and also….cancer  cells.  Then each drug in your chemo mix has a different function, but together they seek to kill those dividing cells.  So….losing your hair as a result of chemotherapy is a “good thing” it shows that the drugs are doing their job!  (This is my new perspective and I’m going to stick with it!!)  But really, the more research I have done, the more fascinating it all is.

So this week has been busy with gathering records, doing lots of thinking, all the while preparing for a couple of brief appearances at school to see the kids, and let them see me…see that I am looking good, and I’ll be OK.  

My next post is going to tell you about the MAGIC that occurred at school, and why I now really know that I have the best job ever.  Right now though I have to get ready to pick up records at Dr. B’s office.

too scared….

May 12, 2009

The phone call

I didn’t actually get to have this conversation today because I was in one of my pain and drug induced marathon sleeping sessions, but this is how I think the phone call went:

“Hello?  This is Dr. Butler’s office and we wanted to let KayLynne know that the Pathology report is “in”. ” 

“Oh, no, Dr. Butler is out for the rest of the week.  Oh, no, I can’t possibly interpret the report”.  

So, there it is.  The good news is, the pathology report, the key to my summer “vacation”, has been determined and delivered.  The bad news is, I don’t know what it contains.  Actually, I’m too scared to just get the results by phone, so I think I’ll just wait one more excruciating day until my next appointment with Dr.Barone on wednesday.

I’ll let you all know here first.

A letter to my breasts

May 3, 2009

Dear little ‘ole breasts,

I woke up early this morning thinking about you both, and how sorry I am that an invader has taken up residence in the left darling little breast.  Life is so unfair, and it is most unfair to you my dears.  Once again, I am so sorry

I guess I was a bit careless in watching out for both of you.  Since I have a sister with breast cancer, maybe I should have been militant about those self- exams, but the very thing that made you so beautiful is the thing that made me careless.  Dense breast tissue is so….well, dense, and it all feels like a big lump.  I really only half-heartedly gave a little self exam, every……oh, every other month or so?  Always figured I was having a medical professional examine you like clockwork every year, PLUS I haven’t missed a yearly mammogram in 12 years, except for when you were really working for those babies.

And speaking of functionality, boy were you girls on top of it!  You two have always been GREAT!   I know many people complain about the size of their breasts, but not me…you girls always looked fabulous!  Your attractiveness, I’m sure, perhaps helped open plenty of little doors here and there.  Oh I know it is not politically, feministly correct to admit to that, but it is true.  And I respected you for that, never, ever did I  “flash” you crudely, or pierce you needlessly.  I always got the nicest brassiere’s I could afford, and dressed you like the beautiful ladies you are. 

And how about those years of breast feeding!?!  Wow, were you two champs or what!?!  Breast feeding two babies!   An amazing thing!   You provided the best nutrients on the face of the earth for two  beautiful little baby boys.  They loved you, you provided more than enough for them, and I was in awe of your abilities.  I never, ever saw breast feeding as a chore.  It was an honor and a gift to sit down and relax with those children I cherish at my breasts.  Thank you, thank you a million times over for allowing me to have those precious memories.  Brings tears to my eyes as I write this.

So it is time to say goodbye.  I am so sorry left breast  that you have a big rock growing inside and I know that  it is traumatic for you, for lately I have really experienced the pain in increasing doses, too.  Can’t imagine how you have been feeling for probably a long time. 

And right side girl, oh my dear.  I suppose it is most sad for you.  No obvious involvement in cancer, yet you gotta go too?   I am so, so sorry, but those babies you nourished and my very life depends upon you taking your exit as well.  Perhaps you will forgive me…

I don’t know what else I can say.  I have loved you (and others have too).  I will miss you, and will always remember how good you were to me.  I promise I will work to educate others of the nastiness of cancer in the best way I know how, so perhaps this experience we have to endure will not be in vain.

with great sadness,

Kay-Lynne

My good karma and optimistic nature didn’t deliver me from cancer

April 19, 2009

So, there it is.  I always thought attention to health and wellness, my good karma and my very positive outlook on life would truly help me sail through this life with a minimum of ……….(what should I call it?) …..”really bad things”.   Oh, how stupid. 

Even though I have a sister with breast cancer (twice!) I wasn’t too worried when, in early February my doctor said, “Hmmnnn.  I don’t like the feel of this in your breast”, and she ordered a diagnostic mammogram.  A diagnostic mammogram is scheduled when your films can be read immediately after they are  taken, and you may be referred for an immediate ultrasound.  Of which I was.  Foolishly, I still wasn’t too worried.  Until March 4th that is. 

March 4th.

That is when she called and I’ll never forget the words, “this doesn’t look good kiddo.  You have a mass that concerns me with irregular margins of 1.2 cm to 8 mm.”   The next 2 days were kind of a fog until my appointment with my new doctor, surgeon, Candilee Butler.  Butler is a small, amazingly intense woman who has a  reputation as a top notch surgeon. 

Once again, a bit of optimism fluttered across my heart as she commented, “I don’t usually see people as healthy as you in my office” while she perused my medical file.  I felt proud for a minute that yes, I do take pretty good care of myself, and for a fifty year old woman, I look good, feel good, and do good work.  Well, that didn’t last for long.  Dr. Butler assured me that my regular mammogram really isn’t the best vehicle for detecting anything in dense breast tissue such as mine.  I didn’t realize that I should have been having digital mammograms the last couple of years they have been available here in Northwest Ohio.  Dammit!  Why didn’t I know that?  I’ve had “regular” mammmograms like clockwork every year since I was 40.

In a flash, Butler had the ultrasound wand on my left breast and it was obvious there was something there, and it was big.  Hard, too.  It was difficult to anesthetize my breast because the mass bent the needle.  Dammit again!  The mass would actually slide away from the core needle attempting the biopsy.  I couldn’t take my eyes off the four samples Butler extracted as she prepared them for the lab.  My tumor is hard, and creamy in color.  Again, words I’ll never forget, “I’m so sure what this is, if it comes back negative, I’m doing it again.”  Ok.  Ummmm……the woman here in the room needs a translation………are you saying, hey baby, you got cancer, we just gotta prove it?  Well, yea, thats what she meant.

Friday the 13th. 

Life was a complete fog for a week until March 13th when Butler delivered the test results, Invasive Mammary Carcinoma, estrogen and progesterone positve. 

This was the beginning of my new life as the girl with cancer.  Wow, how things can change.  The second half of March and April meant:  Blood tests.  American Cancer Society.  MRI.  Bone Scans.  Reddicat and CT Scans.  More Blood Tests.  Mastectomy.  Bilateral Mastectomy.  Breast Expanders.  Breast Implants.  Gummi Bear Implants, and reading, reading, reading, all while keeping a “cover” at my workplace.

I’ve made lots of new friends,  Breast Health Educators, lots of Lab Technicians, Nutritionists, Counselors, Prosthesis Fitters, a couple of Plastic Surgeons, and an amazing and interesting array of “women who have been there” who are nice enough to take a call from a complete stranger to just talk.  The first group of people I “came out” to are the folks at my Unitarian Church.   Thank God for the Unitarians (ha ha, a little Unitarian Humor!) the nicest, most intelligent group of people I’ve ever been around.

Oh, and BTW, my tumor is actually quite bigger than first predicted.  It is 4 .4 cm by 1.7 cm.  Most likely this is stage 2 cancer, and most likely I will make a new friend next month in a  Medical Oncologist.  :^(   Silly, crazy, optimist that I am, I am hoping I don’t have to get to know any Radiation Oncologists as well.

Telling others I have cancer is an interesting, yet  hellish experience.  I never have bad news, so this is exceedingly difficult for me.  I owe an apology to a few people I told early on, as I was really testing out how to even say the words, “I have breast cancer”, and perhaps I didn’t have much compassion for how it might affect them.  I don’t know why, but I usually hate expressions of sympathy, and it takes real effort to not snarl at the friend who murmurs, “I’m so sorry.”  When I got up at church a month ago at the beginning of the service where we share “joys, milestones and concerns” I ended my cancer announcement with, “and please don’t tell me you are sorry, because it just makes me feel bad.”  Actually it makes me wilt into an emotional mess that I’d rather not present to the world, much less myself. 

Well, this is where we are now.  Friday, I completed an autologous blood donation (when you “bank” your own blood for your surgery) and next week I have a couple “pre-op” appointments.  My “date” is May 4th.  Dr. Butler and Dr. Frank Barone will perform a bilateral mastectomy and reconstruction.  This is a big step in the process of the cancer experience.  I am just going to put all my faith in my surgeons, but I am still scared.  I am used to controlling the situation, not the other way around.

If you are a person who prays, please pray for superior skills and clarity for my doctors on the morning of Mon. May 4th.  If you believe in Karma, good thoughts or energy fields, suround all of us in the room with visions of positive outcomes.  I’ll keep posting on new events as they happen.

Love you all,

Kay-Lynne