Posts Tagged ‘mastectomy’

thoughts while driving to appointment today…

March 4, 2010

If your breast expands exponentially and independently will you eventually explode? 

Thats what I found scrawled on the scrap of paper I keep in the car while I drove to my hastily arranged ultrasound appointment this afternoon.  Last night I got to see one of my “guys”, Dr. B, about my big and getting bigger boob, right side.  Getting bigger as in: seeming bigger, seeming to settle down….then getting bigger, and seeming to settle down.  Or at least that is what it has been doing for the last week or so.  Except for the last three days.  Getting big…..getting bigger…..bigger…..even bigger….  On Wednesday the boob-with-a-mind-of-it’s-own started  pulling the special bra, the one that holds the “foob” on the left side in place…over to the right side.  Last night in the middle of the night I woke up feeling like some crazy PS snuck into my room and expanded me 200+cc’s.  Not very funny was my first thought…..whichever brain cell decided to sneak that one in doesn’t know about my particular distaste for nasty misogynist horror films.

Anyways, B’s nurse managed to get an appointment for me today at 2:00 to receive a little ultrasound view of whats happening.  Except I got some kind of Buffy the technician sonographer who told me she worked at Stanford for a year until she came back to Toledo.   OK, I thought, I trusted you up until then….  Of course she saw “nothing”.  No doc came into the room at all.  Apparently he looked at the images remotely and also saw nothing.  They really did not care that I told them it is definitely “something”. 

Right now at 10 pm I think it is even bigger than it was today.  I can feel the boob-with-a-mind-of-it’s-own now pulling on the radiated skin on the flat scary-scar-ry -side -of-my-chest.  Now that’s a definate sensation of creepy and not comfortable.  Who ya gonna call?  Wish I knew.

And as if that weren’t bad enough, Dr. Evans, G.P. called and told me the blood test last monday showed EXTREMELY hypothroid.  And NO WONDER you feel tired with results like these!  Should be in the 4-5 range, but my number is way, way, WAY higher.

Now it’s not that I want to be sick, but when you do feel crappy, it’s nice to have those feelings validated in reality. 

Tooo tired to write anymore……….let’s wait and see what tomorrow brings.

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almost lost my boob tonight

October 15, 2009

OK–It was bad enough that I found myself in walmart tonight, but I nearly lost my new boob. 

Let me explain.  I mean about the walmart thing.  So, number one son needs a new pair of shoes for his uniform for League Cadets (the official Navy group for grade school boys and girls.  really, I’m not kidding…..) and the only place you can get them is at the w-place.  I have a standing vow to only enter the megamart as a store of veryveryvery last resort. 

I picked the kids up from school after 4:30 and we went straight to W.  Since I was sooo exhausted from work (left the house this morning at 6:45) and radiation, we proceeded to pick up a few other things desperately needed at our house….including a camisole for my poor little radiation burned chest.   Finding I can’t wear the industrial bra and super expensive prosthesis anymore…too heavy, and literally, rubs me the wrong way.   Since I finally received my “fluff” or “puff” or whatever the hell it is called from the “tlc” catalogue, I have been trying to figure out how to wear the fluffy fake boob.  I know, you would think that would be an easy thing to get done, but it is more complex than you might think…..

Anyways, tried on several camisoles, each one more annoying, almost ready to give up in frustration and disgust at the “new me” and my sartorial challenges, but the last cami was suitable enough to buy.  Not great mind you, but acceptable.  Of course the boys were fighting outside the dressing room, and I’m thinking, “This is what my life has come to???”  Buying cheap foreign made undergarments at Walmart with my kids fighting outside the dressing room???”  Christ, always thought I would at least rate department store lingerie…..sigh………….

Anyways, decide to buy it, and in a hurry left the dressing room and shoved the “puff/fluff” in my purse.  Realised I need to get hand sanitizer for school (LOTS of snot flying around there) no idea where it was, so I dropped the boys in the Lego aisle to do some wishful thinking while I hunted down the sanitary goo.  On the way to try to find it I walked by a shirt I just decided I must have for the big friggin’ pink day thing tomorrow………..grabbed a M and a L and whisked back to the dressing room thinking to myself, “whoa…..now I’m…..buying…….clothes made in China…to benefit the walton’s??”  As I turned the corner to jump feverishly back into the dressing room, there are two “associates” with my boob discussing whether or not it is a shoulder padding for something or…..what?  . Dang, I just paid $16.00 for that bit of fluff and I nearly lost it the very first ime I wore it?  Now, this is like an ice cream sundae full of pathetic. 

So what would you do if an associate at walmart was holding your boob?  I just said something like, “Oh, for gods sake, that’s my boob.  See I lost my boobs and now I can’t wear my real fake boobs, so I just got some fluffy fake boobs, and I can’t believe…blahblahblah…..”  By the time I got out of the dressing room there was a gaggle of associates at the dressing room entrance……I imagined to see the boob, but maybe they were just working…..

Fatigue is real.

September 2, 2009

Yes, I know I haven’t posted in awhile and thank you for calling to see if I am OK, but it is just that the fatigue of four chemo’s is real.  When Dr. Schott said the effects of chemotherapy is culmulative, she wasn’t kidding.  Actually, she (and NP, Joan) were so right on all their predictions, that I will just believe them completely from now on.

This fourth round of chemo hasn’t been as horrible as round three was, but still, itchy hands and feet, no hair, searing hot flashes, fatigue, and bone pain.  Good news on the bone pain though, if you eat ibuprophen like candy, it is actually bearable.  I took Joan’s recommendations this time and have been downing multiple Motrins at very regular intervals, whether I have pain or not, and it is working pretty good.  No collapsing because of intense and sudden pain this time around.  Countin’ my blessings however small they may be!!

The hot flashy thing is a trip though.  Last night (for kicks) I recorded each time I was wakened when I voilently threw off the covers and dove for my water bottle.  My bedside post-it note pad has the following times recorded;

11:00pm, 12:24am, 1:53, 3:30, 4:19, 5:46,

and then a little break…7:30am

Then, all day, I only had two, maybe three hot flashes. Whats’ up with that?  Why does the body save the fireworks for the overnight hours?  So they can be seen against the night sky?  Is this some kind of sick entertainment for extraterrestials we are not aware of???  (I have chemo-brain…….I’m allowed to go off on whacky tangents.)  If the body seeks balance, this does not seem to be the way to do it. 

As if that is not enough…

I am still trying to process all that was said during the last U of M visit as well, namely the option of participating in the “Phase III Trial of Bisphosphonates as Adjuvant Therapy for Primary Breast Cancer” Clinical Trial.  I am trying to find non-fatigued time to do some independant research on this, but the basics are: Bisphosphonates seem to strengthen the bone, and in previous studies of women who did not have chemotherapy, they provided a 30% better chance of NO  relapse of breast cancer (in the bones, a common place for relapse of BC apparently).   Sounds good, right?  But, not so fast….. there is this whole world called “risks/benefits” analysis……of course bisphosphonates as a drug/adjuvant therapy have risks, as well, and one of the risks  is osteonecrosis of the mandible, and to a lesser extent the maxilla.  (I think this means death of the jawbone.) Of course, this occurs in a small percentage of the people who take this drug, but enough that my dentist wants to talk to me about it before I sign up….so back to the tooth man next week (again).  Part of me really wants to go for this one, because a recurrance of cancer in the bones just sounds so….much worse.  Can’t really just cut ’em off like we did with the breasts.  And if my jaw bone goes south, well that’s bad I suppose, but not as bad as dying from bone cancer, right?  I really hate these life and death decisions….I’d like to go back to deciding what kind of wine to have with dinner. 

Just being able to have wine again will seem like a gift.  As soon as that mettally-mouth thing goes away, I’ll have another small blessing to count.

Tomorrow I get to meet the Radiation Oncologist, Dr. Rubin, for the first time.  I have heard wonderful things about him.  I sooo hope I like him and his recommendations.  I’ll let you know here first.

Serious anxiety

July 29, 2009

OK, so now I am getting a serious case of anxiety about a visit tomorrow with a new doc for me…Dr. Hayman, Radiation Oncologist.  I have been sending him vibes of  “no radiation for Kay-Lynne” but I don’t know how strong my super-powers are this week.  And, to top it off, I think I have not researched everything I should have in preparation for this visit.  Because, of course, I don’t know where to begin. 

All I know is, if I have to do radiation, it will complicate the already messy business of breast reconstruction.  I just want to be done with the chemo (only 2 more treatments to go!) move on to the endocrine therapy (more commonly known as hormone therapy) and try to claim my life back. 

I know it has only been 6 months since this roller-coaster ride began, I shouldn’t be whining about it.  I’m doing pretty good and I should just be thankful.  And I am.  Just want to skip being irradiated.

If you have any helpful hints for me…..questions to ask the new doc, please don’t hold back.

‘Tis the night before chemo and all through the house………..

July 15, 2009

Well, it’s the night before chemo #2 and there’s a lot of anxiety that I can observe….makes me wonder, do I cause all of this?  Even the dog is acting kind of goofy….sigh…..

I will begin early early tomorrow in Ann Arbor with a “fitting” for a compression arm cuff for the left arm.  The lack of lymph nodes has provided me with more to think about.  Then blood tests, wait an hour, and see my oncologist.  I sure hope Dr. Schott and NP Joan are back.  I sure hope there is no reason to turn me away from chemo tomorrow.  I have a lot of “hoping” going on.  If I can get this chemo in, I’ll be able to say I am halfway done with chemo….and that is something to be grateful for.

I have been having an exceedingly difficult time working on my new classes for this next school year.  Way more difficult than usual.  I am able to think clearly, so far no “chemo-brain” effects, but I find that I am easily distracted with kids, and house stuff and “sick” stuff and finding it difficult to work at home.  I think in the coming weeks if the chemo effects aren’t too bad, I will have to find child care so I can remove myself and all my books to the library to try to focus in a different environment.  Thats’ got to work.

I feel good enough that the inconvenience of this cancer business is annoying me.  I wish I could just get through even half of a day without losing my focus.  I try and try and try to just forget about it, but it doesn’t seem to go away from my surface thinking for very long at a time and I’m really losing my patience.

Wish me good luck tomorrow afternoon, that Dr. Schott lets me get the meds.  And wish me a big dose of centered thinking and patience and acceptance of  “what is” for the coming weeks.  I’ll need it.

shopping for a boob

July 15, 2009

Well.  That wasn’t a very graceful or poised title was it?  Normally, I use anatomically correct terms, such as “breast” but I just kind of liked the double-entendre of “boob” .  In this case, that is kind of how I feel about this topic.  Sorry guys-if this is just too much information, go ahead and click out now.

So.  The time has come to begin to think about how I will return to school and what I will look like.  Many of you know that I teach  kids at the Junior High School level…..in case you’ve forgotten, that is the 12 to 14 year old range.  I have already decided that I am planning on teaching with a “naked head”.  That will take some guts, even for me.  I just feel it is the right thing to do…it is important to send the message that even though I know it looks goofy, this is who I am now, and “this too shall pass”.  Kids at the JH level can use a good example of somebody even weirder than themselves to boost their self esteem, and provide an example of how to get through the tough times.  Might as well be me.  Because it is  me.

So, OK if you are a 13 year old kid and you have a crazy teacher with a bald and stubbly head, would it be just too much if she only had one breast, too?  I just don’t think I can go there with that much honesty in the classroom, therefore, I find myself perusing the American Cancer Society “tlc” catalog (“tlc” stands for “tender loving care”…a little on the sweet side for me).  Hmmmmnnnnn. They have pages of  “side entry cotton-pocketed post mastectomy bras”.  Oh my god, what the hell is that?  I tried, just for “fun” to put on my most favorite old bra (the $75.00 “Bralleluia”  Bra) a few weeks ago, and immediately ripped it off my body, because……..ummm……it doesn’t “work” anymore.

I have the right side of my chest in reconstruction.  A very very ROUND expander implant is in place with (at this point in time) 450 cc’s of saline.  It is ROUND…the normal breast is nowheres near round.  More like a teardrop shap.  Big teardrops.  The round implant exends out to the outer side of the body more than a real breast does.  When I tried to put on an old bra, big round implant doesn’t slide into the cup.  In fact, it doesn’t slide at allA real breast is soft and pliable and conforms to the shape of the bra.  A real breast has feeling!  An expander implant breast, well, it is hard, and has a definate shape, and isn’t exactly innervated.  So when I walk, the right breast stands rigidly at attention and doesn’t really know if it has bumped into things directly.  She is almost kind of rude that way.  It is kind of like having an innverted cereal bowl on your chest.  Try fitting that into a bra.  (BTW-I’ve been trying to come up with names for her, the expander implant…nothing seems to “fit”….hahaha…a little implant humor!!!!  Maybe I should host a contest, “Name that BOOB!”)

SO-back to the “back to school shopping”.  I’m looking at the bras and camisoles and breast forms.  Oh my heavens.  There are flat back forms and molded triangle forms and molded asymmetrical forms and molded hollow back triangle shells and that is just the options in the foam breast forms.  Of course all of them can be ordered Unweighted or Weighted.  Whatever that means.  So how do you choose?  Just choose the most expensive one and hope it is great?  These are all the inexpensive options, with the most expensive being around $50. per “form”. 

Now when you examine the silicone options, theres where you can spend some money, with the cheapest boob being $175. and my lord, the options here……you need to pick left or right side and “softer drape” or “firmer drape”.  Wow.  Who knew?

I have tried to seriously make a decision on this breast form business, and I just get kind of overwhelmed.  Sure wish I had a mother helping me pick out what is best.

Post Note:

So last night I finally went to the Breast Cancer Support Group meeting at the Victory Center….ah yes, The Victory Center**, once again a place of support, comfort and answers.  When I told Penny (the most sweet and lovely “Participant Services Coordinator”) about my humerous attempts to get serious about buying a boob, she gave me a local contact.  Apparently “Renee” of  “Renee’s Survivor Shop”  is just a doll and would be willing to let me come in with a photographer and document the “shopping” .  I’ll make the call today and see what I can set up.  Stay tuned for a second installment of “shopping for a BOOB” coming to this blog soon!

 

**The Victory Center supports and educates Cancer patients and their families, free of charge.  Check it out: www.thevictorycenter.org    I am working on figuring our how I can, and you can help support The Victory Center. 

How do you pull out the chemo-stubble on top of your head?

July 7, 2009

Well, now that’s a question I never dreamed I’d spend half a day wondering about!

So.  Last night, I went to cool-Paula’s house to get a shave.  Entire head.  Good thing her teenage daughter was there to drive the clippers while Paula collected the hair.   We even shaved a mohawk in place just for fun, but 50 year old women with salt & pepper hair don’t look that good in mohawks.  So off it all came.  I thought I might be a bit more crabby than I am about it, but for now I’m just avoiding mirrors. 

Talk aboout a transition.  I haven’t yet gone out into the general public with the new look, but I just got a call from Mill’s Hardware telling me my screens are ready.  I think I’ll see if I have the nerve to walk in without the ballcap to pick ’em up.  (Probably not.)

So here I am.  One roly-poly round partly constructed breast, one sad, not-ready-for-construction cancer chest, shaved, five-o’clock-shadow-head, and believe it or not, I really feel pretty much “OK”.

Except for the creepy stubble icky feeling on top of my head. 

So, other than shaving, how DO you get the 1/16th inch stubble out!!  Please respond with any and all ideas!  I’ll try about anything at this point….what do I have to lose?  I’ll report back here the best solution.

scared about the hair

June 29, 2009

In less than 24 hours I have an appointment to get my hair cut real short, so that when it falls out, it isn’t such a demoralizing shock.  Except now……..I am getting a little anxious about this.  Gee….am I really going to lose my hair?  Maybe since I am only having Taxotere and Cytoxin as my chemo-concoction, the hair will “hang on”……..do you suppose?  Maybe since I only had a few crappy days of side effects from chemo, I’ll be lucky about the hair, too.

Had no idea that I would be so anxious about this, and I am upset that something as superficial as hair is causing me this grief. 

But, on the other hand, losing the hair really kind of makes the whole “C” experience more real.  At least once a day, I look at myself and think, “wow, I still can’t believe this is happening to me.”    So.  Maybe doing the cropped cut is good, to force me to accept it all (of course the mastectomy went a long way in forcing “acceptance”  too.)

Then again….am I really gonna lose my hair??

:^(

post chemo, day three, tired but OK.

June 22, 2009

Well, today is Father’s Day, and I felt a little bad that all Daddy got was a simple poached egg breakfast, cards and gift cards…and then he was on his own.  Actually, I’m glad I could at least pull that together.

Because I am pretty good at following directions, I got up and walked this morning for 20 minutes to test the hypothesis about daily exercise keeping the nausea at bay.  (So far, we are winning that war!) But by the time I got back home, all I could do was just sit on the front porch.  I really wanted to go to church, but it was more effort than I could muster, so I just read the Toledo Blade from cover to cover. 

Eventually I got up and puttered around the house doing laundry and other mundane chores, but by early afternoon, I was pooped out again.  I guess the “fatigue” is a real side effect of poison in your body.  I hope it stays at this level and doesn’t intensify, but that is not what I have been led to expect.  :^(     But, I guess the good news is that if you really listen to your body, and rest when it asks you to, you get a little reward of a little more energy. 

So, I guess that is the new normal for this week anyways…..a few hours up, and then a few hours down.

new plan?

June 13, 2009

Here it is Saturday, and I have been working on this post since Tuesday.  Quite a long time because I am so……confused?….no, that’s not the right word.   Conflicted?  No, that’s not it either.  I want to be able to make an intelligent decision based upon facts and I am stuck in “emotion”.  I know what my heart wants to do, but I am so concerned about making the correct decision, because well……it all comes back to desperately wanting to see my kids graduate from High School.  It is so easy for others to cheerily reply…..”oh, you will!”…….and I think that might be true, but I don’t know that.  These are the “tear-jerker” thoughts I have at a moments notice.

Wow, how interesting it was to go to U of M on Tuesday and listen to a whole new version of a viable “treatment plan” for my unique cancer case.  I don’t mean to make my personal pack of terrorist cells sound like they are something special or anything.  (Well, they are kind of special to me, even though I intend to kill them).  At University of Michigan, the Breast Care Center is quite a big place.  Lots of breast cancer walks out of the elevator doors there.  I felt like a sick chick suddenly opening the doors to the Cancer Land of OZ.

My experience at the Breast Care Center began with a review of my history, a brief physical examination, and Dr. H (a “resident”, I think) brought up a website called “adjuvantonline” which has statistical data to help an Oncologist discuss the “rate of recurrance” of cancer, or the “mortality rate” with your personal information plugged into the program.  Then they enter data of different types of therapies and get a bar graph that demonstrates the risks/benefits of each therapy for you.  I know some are skeptical of this site, but if a major medical/research facility uses it, it’s good enough for me.

OK, the whole motivation to go to U of M was to get a “port” placed in my arm for delivery of chemotherapy meds.  Imagine my surprise when Oncologist/Internist Dr. Schott said, “No…you don’t need a port.”  I was stunned.  What I had taken as acceptable reality in Toledo was kind of “old school” at U of M.   Dr. S  recommends four treatments of chemo three weeks apart.  Only four treatments?  Yea, only four treatments.  Not enough to have the inconvenience of surgically inserting a subcutaneous port.  The ports make it easier for the nurses to administer the meds but also have risks of their own, as well.  She assured me that the nurses at U of M are  very good at what they do, and they will be able to find a vein sufficient enough for chemo meds, and no, they won’t “collapse” my veins and yes, it will be all right, they do this all the time with women my age and older. 

The most significant difference between Toledo and U of M?  In Toledo, I have Stage II Carcinoma, at U of M, I have Stage I carcinoma.(**see note at end of post)  Wow.  Big difference.  I could give more examples of differrences between the two places like, recommended behaviors, suggestions for short term planning, etc. …but the staging of the tumor?  Well, that really muddies the water.  I have been evaluating  my records from Toledo to try to figure out what grading scale was used, U of M indicates the Scarff/Bloom/Richardson grading scale.  I have read and researched, and I honestly don’t know which place is correct.

Of course the “stage” of your cancer is vitally important when determining the adjuvant therapy (nice way of saying chemo-poison and other drugs) most appropriate.  Here there is a significant difference in “suggested method of treatment” (I word it that way, because the Oncologists I have met have been very careful to provide a choice, and not be too pushy about which of  the two is better.)  In Toledo, my Onco-man has suggested a TAC regimen. This means: Taxol, Adriamycin and Cytoxan for six treatments, three weeks apart…about 18 weeks of chemotherapy, followed by “hormone” therapy, to block estrogen and progesterone I still naturally produce (my cancer “feeds” on estrogen and progesterone.)  At U of M, the suggestion has been to infuse Taxotere and Cytoxin in four treatments every three weeks….about 12 weeks of chemo, followed by “endocrine” therapy (same as hormone therapy, but a “more accurate” term).  Notice U of M leaves out the Adrimycin.  Funny thing about Adrimycin…it has a nasty side effect of “potential heart damage”.  When Dr. S explained a potential chemo mix that included Adrimycin, it only decreases the rate of recurrence within five years by 2%.  What would you pick?  Take the drug with the potential of damaging your heart muscle, or, a 2% better chance of no recurrence of cancer in the next 5 years?   I have ten more years before Charlie graduates from High School.  Sigh……….

Of course, that intellectual dilemma takes me back to the question of “Stage”.  If truly a stage II cancer, perhaps a more aggressive approach will get me to the goal.  Maybe I’ll be lucky and not have the “side effect” of heart damage.  Then I think about the No 1 killer of women……of course, heart disease.

**Revision (6/15/09)  I need to add an updaste to this post.  From my first visit to U of M, I discovered that I misunderstood some information that was presented to me.  The Pathologists at U of M did indeed list my cancer as a Stage 2 cancer.  (I misunderstood information about the “grade” and “stage” of the cancer.)  Once I had made a second call to the nurse practioner who assists my oncologist, she patiently explained all relevant information to me not once, but twice.  This small experience goes to show you that even when you think you have fully understood everything, took notes, etc. there can still be misunderstandings.  It is SO IMPORTANT to ask questions, and don’t settle for an answer you do not understand!  It is your life and you deserve to be fully and completely informed!