Archive for July, 2009

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July 30, 2009

I can hardly write I am so disappointed.  Recommendation by radiation docs-25 treatments in 5 weeks.

But there were mixed messages, too.

I have tried twice, but can’t manage to listen to the tape of the consultation appointment I had today.  Once I do that, I’ll post more information.  In the meantime, I need to connect with women who have had radiation prior to reconstruction.  Anyone out there?

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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.

Good News

July 28, 2009

Here is a quick post-

Today I went to a Retina Specialist as suggested by my eye doc last Thursday.  Good news is no big-deal-bad-problem……  This guy dilated my eyes, poked around just enough to be a tiny bit freaky, and then said, all looks OK, but be aware of the signs for retina and/or vitreous detachment.

Do you know the signs for a vitreous detachment?  They are: flashes of light, a large number of  “floaters”, or black spots in your field of vision.  Also “shadowing” of vision, like if a curtain has been pulled over your field of vision is a symptom of Retina Tears.  If you ever notice these symptoms, especially if they seem to come on suddenly, it is important to call your Doctor immediately, even if it is a weekend.  A retinal detachment can be very serious business.

Not something I thought I’d be thinking about in the middle of chemotherapy, but lucky for me, it was a “false alarm” of sorts.  Just something to keep an eye on.  (A little opthalmic humor……keeps my boat afloat!)

Now lets hope the Radiation Oncologist has the same kind of news for me on Thursday….I want them to say, “no way you need radiation!” because that will mean I’m almost done with the “active” phase of treatment.  I have all my fingers and toes crossed….won’t you cross yours too?

What a blessing!

July 28, 2009

What a good day today!  Began with a massage at The Victory Center (TVC).  While I was there, I had  the good fortune of running into one of my “adopted” Chinese sisters, Helen and her brother, Tom.  If you have heard me talk of Helen before, let me briefly explain this relationship:  soon after I was diagnosed with breast cancer, another friend suggested I call Helen as she (and her sister) had both recently been through the Breast Cancer Roller-coaster ride.  I eventually did call, and we immediately bonded.   There is nothing like having someone to talk to who is open and willing to share.  There were so many questions I had that I never had the time to ask my doctors, they would have never answered them anyways, but Helen did.  We spent hours and hours on the phone, and she allayed many of my fears.  Thanks, Helen, for giving me peace of mind when I needed it most. 

Then, later in the afternoon, I accompanied Kelly, the director of  TVC, to a speaking engagement of the most lovely group of women I think I’ve been around in a long time.  Now, I hope I get this title right….they were the National Association of Colored Business and Professional Women.  (If I have written that incorrectly, please comment on this blog and I’ll make the correction right away.)  First, Kelly spoke about what TVC is, and then I spoke about my experiences as a mother and caregiver, suddenly being in need of  “care-giving” and how TVC has played an important role in my acceptance, connection to others, and recovery from the treatment of BC.  Surprisingly, I was a little nervous…..this was the first time I have ever spoken in front of a group about my personal story.  I speak in front of people all the time as a teacher, but teaching a Junior High School class (which I lovelovelovelove!!!!) and speaking about “me” are two completely different things.

Well, let me tell ‘ya, I couldn’t have picked a better first time audience if I had tried.  These women just exuded acceptance, understanding, and compassion.  Wow-what a great group of women!  They were encouraging, and so very sincere.  When I finished my small part of the presentation, Kelly returned and explained in more detail how TVC functions, and how they serve any cancer patient free of charge.  We then fielded questions and comments from the ladies, and they were so incredibly kind!  It was just a “love-fest” of niceness all around, and lots of prayers sent my way.  Thank you ladies, so much for making my day wonderful!

  

For more information about The Victory Center, please go to:  www. thevictorycenter.org   BTW, the massage I began the day with was lovely!

rollercoaster takes a turn up….

July 26, 2009
 Well, two days ago I felt awful physically, and got bad news (?) from my Optometrist.  I consciously decided to not be upset about the eye news until I know more after Tuesday.  There.  Done with that.  As for the bone pain, it, too, is slowly taking leave of my limbs.  Yesterday and today I have been more active, choosing to push through the pain, and have been mostly successful in ignoring it, at least until I slow down.  Then, I kind of pay for it, but it is nothing that three Motrin’s won’t modify.

The reason I decided to ignore the bad stuff yesterday was because coolPaula had arranged for an interesting whirling dervish of a woman named Gaya to come to her home and cook some lovely Indian food, talk about life, mandalla’s and energy forces, and teach a brief meditation exercise.

025017a spicy vegetable mix

 

Here is what I learned:

  1. Not only do Indian women talk really fast, they cook really fast.  I was paying very close attention and taking notes, while I was helping to prepare four complete and beautiful Indian dishes, yet I couldn’t repeat any of the dishes, except maybe the rice noodles on my own.
  2. There are different kinds of cumin, and the cumin we usually cook with won’t work in this type of cooking…..Gaya called it:  “gigantic cumin, it ruins everything!”
  3. In India, food is used as a healer…..Fresh Food gives Fresh Thinking.
  4. My notes say: “Celestial wholeness…..Mandalla is wholeness within yourself.”  It was profound at the time, that’s all I can say. 

I’m not sure how much I gained as far as knowledge of Indian foods, or understanding of the “inquiry method of meditation”.  But this I do know.  There is nothing more fun than getting together and preparing food together, especially when you have a “director” of sorts.  Preparing and sharing food together is good medicine, for me anyways.  I resolve to, when I am “more better”, invite friends over more often for dinner, AND have the preparation of the foods be a part of the entertainment.

Chinese Dragonboat Festival

So early this morning, the weather was awful, and I wasn’t sure we were going to make it to the Dragonboat Festival, but at exactly 10:15 it stopped raining, and I managed to get the boys up and out the door by 10:45 to go to the Dragonboat Festival down at International Park.  Amazingly, there was no resistance, no whining, no “Idon’wanna”s” from either kids, and we arrived just in time for one of the Dragonboat races.  Both boys seemd to think it was cool, and so did I. 

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The weather really cleared up, it was breezy, but just the right kind of breeze, enough to kick the stink off of Toledo and make it…actually kind of cool.  We arrived in time to see Kathy and Linda in the Tai Chi demonstration, and the boys got to pick up “kid stuff” and buy pop and play games and win prizes.  So there was something in it for everyone…..two hours of a different kind of experience.  By the time we were ready to walk out, the chemopain started to creep up, and I was so happy to get home and hit the bed.

I’m glad to have friends that are so interesting and are into really different and cool things like Indian cooking and Tai Chi.  I love the diversity, and it is all fitting into a good place with me at this time.  Thank you!

7 days post chemo, all’s not well.

July 23, 2009

So this time it took 6 days after chemo to feel kind of bad and 7 to feel really bad all over.   Not unbearable, but not good.

As if that is not bad enough, I had an eye appointment today, just thought I would be receiving a new prescription for contacts and glasses.  My eyes have really seemed to gotten a lot worse lately.

Imagine my surprise when my doc said, “I want you to see a Retina Specialist within a week.”  Apparently he saw something in the back of the eye that needs attention soon to be sure there is not any danger of a retina detachment.  I don’t think it sunk in until way after I left his office (probably because my eye was numbed and really dilated…..that was distracting enough when you already don’t feel good.)

So next week:  Tuesday – Retina Specialist,  Thursday – Radiology Consultation.

I need all the good vibes, or prayers or whatever ‘ya got for me next week.

Irrational fear.

July 20, 2009

So today is Monday, four days after chemo, and I’m feeling kind of OK.  I was able to get up and walk for 25 minutes this morning, and followed up with an hour of  rest.  Other than the horrible and icky mettalic taste in my mouth, the general fatigue, and slight achiness in my bones, I feel pretty good.  And that is what kind of scares me. 

I have read a fair amount on this subject, but I am still worried…..I seem to be handling chemotherapy remarkably well.  Does this mean that I’m not getting a strong enough regemin?  If my other cells aren’t suffering, then maybe the potential cancer cells that are possibly floating around in my body are completely free to do as they please.  It’s not that I want to be suffering, but I just want this chemo experience to be doing the job………  And intellectually, I know these thoughts are completely irrational, and they should not be entering my mind.  

Hmmmnnnn.  I guess this is anxiety creeping into my consciousness again. 

I just wish I could be sure of anything right now.

Ahhh yes, that mettalic taste in the mouth means you just had chemo….

July 19, 2009

Well, it is two days post chemo number two.  YEA, lucky for me, I am halfway through my chemotherapy regimen!!  Now I have that awful crappy taste in my mouth, and I am grateful that I have no nausea, but the only way to get the “dirty pennies” taste off of my tongue is to eat something stronger than dirty pennies.  I’m thinking really rich dark chocolate truffles sounds good right now.  Too bad the “food therapy” is only momentary.

So Thursday was an interesting day.  Started off early (8:30 am) with a cool lady, Cynthia, a U of M Orthotics Fitter.  She measured and fit me for a compression arm sleeve for the left arm where all the lymph nodes were removed.  Do I really need it?  Hell, I don’t know, but if  “Geeta the Great”  (my PT) said to wear it, I’m gonna wear it, or least try to wear it every day.  Can’t hurt I suppose, and the discomfort in that arm, underarm, and down my side is significant enough for me to do whatever anyone smart suggests. 

Then,  back to the U of M campus for:   Blood Tests,  appointment with Joan, Nurse Practioner,  and of course, Chemotherapy Infusion.  Somewhere in there I had time to go to the “U of M, Comprehensive Cancer Center, Patient Education Resource Center” which is a fancy name for a teeny tiny Lending Library for Cancer Patients.  A very small room with lots of books for people like me.  I loved this little place!  So much information and so little time.  I wish I could just ignore the world and readreadread all about all this business.  Cancer is pretty interesting on a cellular level and the treatment options and medicines are absolutely fascinating as well.  Here is something I learned while waiting:  “Toxicity from Chemotherapy:  …..Most drugs can cause nausea and vomiting by stimulating the chemoreceptor trigger zone and emesis center in the brain….”**  Wow.  Did you know there was an emesis center in the brain?  I sure didn’t. 

So, when I was finished with Super Nurse-Practitioner Joan, they moved my chemo up an hour, and it was quite a dash to get food and carry it to the infusion center.  Didn’t really care for that, I still think meals should be revered and enjoyed, even meals consumed in hospital cafeterias. 

Had to get to the different infusion area, the “Med Inn”.  Mary was my infusion nurse, and brought a load of meds to my tray.  Holy cow there was a lot of stuff there!  Here’s what I have in my notes:   Decatran, anti-emetic for the chemo trigger zone.  Aloxi, a long lasting (3 days) antiemetic which binds to the chemo receptors in the gastrointestional tract.  Benedryl, an antihistimine, “just in case” since I had an allergic reaction during the last infusion.  Zantac, I think to also prevent an allergic reaction.   And one more, Ativan…this is an interesting one….a sedative to prevent “anticipatory nausea”.  This drug prevents the development of patterns in the brain, like, oh, I’m here and I’m going to feel sick….it stops that pattern of thinking.  It took quite a while to get all those in, of course my quizzing Mary about every detail really took time, too.  But you know, she was so patient with my questions, and so incredibly detailed with her answers.  I really appreciate that.

About a minute after she walked away from initiating the first chemo med, Taxotere, I heard a  little panic in my voice as I called out, “Uh Mary, I’m having  a hard time breathing!”   This time the reaction was more scary than the first, but again, quick reactions by nurses go a long way to soothe the nerves.  She immediately turned off the Taxotere, came back with another medicine to counteract the reaction, and eventually got the drugs rolling again, v e r y s l o w l y. 

“Infusion.”    I don’t know why, but the word really does not set right with me.  Hot tea is “infused”.  But the idea of infusing my body with powerful medications…..   Maybe it is because I’ve never been sick before, but the concept is one that I still have to wrap my brain around.  I wish I didn’t have this need to understand, I wish I could just accept my doctors directions and forget about it.  Oh, there are a lot of things I wish right now.  But nevermind.

Finally, all the Taxotere was in and Mary was off shift, and apparently my brain took a little leave of absence because I didn’t even get the name of the nurse who started the Cytoxin in my IV. That was certainly uncharacteristic for me.  But by this time, I was kind of weary, and couldn’t focus on the beadwork I had been trying to do, got my laptop out and tried to write, listened to a “TED” lecture instead, and then I think I dozed off.  I think it was after 5 pm when we were all done, and while that would have been a short work day, it seemed like a long “hospital day”.

It all seemed so anticlimatic and kind of depressing.  But a lucky kind of depressing.  I made it through, and now I am halfway done.  If the universe is kind to me, I won’t have to do chemo #2 again. 

 

**Chan, Helen S. L.    Understanding Cancer Therapies.    p. 47.    Copyright 2007.    University Press of Mississippi.

Another quick post

July 18, 2009

So today I’ve been asked to be a bit player on the Channel 11 Saturday morning show (at 8:15 am), in a segment to promote “Chick’s For Charity” fundraiser coming up next Wednesday at the Toledo Botannical Gardens.  Chicks for Charity is another cool group of women who just do fundraising, and their charity for the next two years is The Victory Center.  I will be the token cancer patient and hopefully I’ll get 20-30 seconds to say something fabulous about how much the Victory Center has helped me emotionally and physically with this daunting time in my life. 

Do I have the nerve to go on television without a hat, with all uneven stubbly hair???

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