Posts Tagged ‘clinical trials’

my relationship with Zometa

February 25, 2010

Monday was Zometa #5, the infusion that almost “wasn’t”.  I’ve been having problems with my right arm for a few weeks.  Weakness and weirdness.  Not exactly painful, but uncomfortable.  Well, really uncomfortable, but it only occurs under certain muscular tensions, such as carrying a grocery bag with handles down at my side or brushing my teeth, that is where I noticed it first.  Now though, I have noticed that handwriting is really uncomfortable, too.  It makes the lower muscles in my arm ache first, then the muscles in my upper arm, then my hand.  Ouch.

So I had the distinct impression that I almost lost the infusion, in that my nice clinical trial nurse said, “hmmn, I have to talk to the Dr. first, and be sure it is OK for you to get the Zometa today because the (infusion) nurse is nervous about giving it to you.”  I got a little panicky…..as in, no, no, don’t take away my zometa!  There I was, all alone having a little tiny freak-out session about not getting a drug that is a clinical trial drug anyways because I have completely psyched myself up that this is (again) going the extra mile in “The Saga of the Slaying of  the Cancer Killing Cells.”

then later, it hit me like a shot in the middle of the night.  This must be what an abusive relationship is like.  I want to keep on living with Zometa, and my well meaning friends (nurses) might be suggesting thinking about twice about this…….may be thinking that.  No one has come right out and said that.

Hmmnn.  Also have a problem with my right eye being really easily irritated and getting red.  Actually both eyes have been really puffy in the evening and morning.  What’s up with that?  And just feeling kind of shaky in general.  Tired.  Exhausted, really.  Shaky.  Add to that the high blood pressure news from last month from Dr. Evans, and well……….this is all challenging my image of myself as a basically really healthy person who just happened to get a little case of cancer. 

I’m working really hard at maintaining my PMA (positive mental attitude.)

Saw Dr Evans yesterday, and he mentioned that fear of losing Zometa is probably pretty normal.  Made an analogy to Zometa being one of my “shields” in my battle against cancer.  Yeaaaa….that’s it.  That’s exactly it.   And by the way, now the friend count telling me I don’t look so good is climbing, so I guess it is not all in my head after all.

The bright spot?  Saw Veronica today for some “Healing Touch” at The Victory Center.  When I told her I am now daily dependant upon the Dali Lama chant CD, she quickly switched the music to a special higher vibrational level CD that I must find and buy.  I quickly zoned out on it and it is better than any drug, I’m sure.  It was so good to completely relax. 

falling asleep here at the keyboard….putting dali on the CD player…more later….

Advertisements

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.

a couple of good days….

August 25, 2009

Wow-lucky me- Sunday was another good day!  Got to go to church, see all my friends…..nothing quite like going to a place where not only does everybody know your name, but they are all like really nice  big brothers and sisters and moms and dads.  Some of them are like quirky neighbors, and others are just like best friends.  Truth is, I really have only known them all for less than two years, and only know them from church*, but I know their interest and care is sincere.  Again….lucky me. 

Then on Sunday afternoon, I still felt great so I went to the Levis Commons Art Fair and got to do one of my favorite things….buy “Artist Jewlery”.  I found a sweet little set of a silver necklace and earrings created by a Michigan woman and her dad…..I tried to take a picture of them to place here, but I’m no professional photographer…the necklace says “give thanks”.  It truly represents how I mostly feel, even if you think I sound kind of “whiny” from time to time. 

Today……well, today was a whopper of a day!  I was up in the middle of the night with an anxious and sleepless child (school anxieties) so I can’t believe how much I accomplished with the help of my friends.  Especially MarvelousMarilyn (MM).  Let me tell you about MM.  She has volunteered herself as my monday morning helper around the house, which mostly means “maid work in the kitchen”.  But MM has really been a great inspiration for me, has kept my spirits up when I have been dragging, vigorously wiped down my kitchen counters (still kind of difficult for me to do), helped clean out a neglected refrigerator, vacuumed, vacuumed, vacuumed Yellow Lab Dog Hair, folded laundry, talked to boys, etc. etc. etc.  Today MM helped me clean up the “student center” in the house which is where all the kids school work, legos, and miscellaneous crap lands, and where their beloved computers reside.  Well, this area has been a DISASTER for….months, and I have been feeling bad about that.  Not a good enough housekeeper to even get the kids school work from LAST SCHOOL YEAR saved or filed away or thrown out or whatever you are supposed to do with the volumes of paper two kids bring home from elementary school.  Well, today MM helped me in A BIG WAY get it pretty much whipped into shape, and looking good.  Still a bit to do yet, but I feel like I can get the rest of it now.  Even if I had done nothing else today, it would have been a great day because of this accomplishment.  Thanks Marilyn, you are a marvelous friend and like a mom I wish I had.

THEN, after lunch, I took the boys to their new daily afterschool childcare, to get to know the family, the toys, the other kids, etc. while I had a couple of appointments.  I am keeping my fingers crossed that it works out for all involved.  Like..all of my fingers crossed and toes crossed, too, because right now, I don’t have a back-up plan for afterschool child care, and even though I’m not back at work yet, I will be soon (I hope) and will desparately need the assistance then.  So far, the boys have said it was “OK” which is a good sign.

SUPER LUCKY ME, had an appointment at The Victory Center** with Tom.  I’ll tell you, we are so lucky here in NW Ohio to have TVC and receive the benefits of the adjuvant therapies offered.  You know things are good when you begin to feel better just walking into a therapist’s room.  Tom practices Reiki and Sound Therapy and it is the best I feel all week when I am in his care.  It is so difficult to explain, but for me, it provides such a deep sense of peace and relaxation which permits your mind and body to just experience the flow of energy on a completely pure level.  You must be willling to release conscious thought to truly receive the benefits.  Again, I can only say what it gives me, but it is a colorful, relaxing, yet at the same time energetic experience.  And no two sessions are exactly alike.  And I always feel just great when I am done.  Thanks Tom, I love the work you do.

AND AS IF THAT WASN’T ENOUGH, MY NEXT APPOINTMENT WAS WITH THE DENTIST!  Now you might think I am being kind of sarcastic here, but nooooo, I actually like going to the dentist.  First of all, at MY dentist’s office, everyone is really nice and the hygenists never scold you for not flossing well enough.  Secondly, they have really nice chairs.  Thirdly, Dr. Urbanik is friendly, sincere, and has really small hands.  Or at least I think he does.  I never actually look at his hands when I can see them, but I am always impressed that when he has his hands in my mouth he doesn’t make me gag.  The last time I was there was just days before my cancer trip began, so I filled them in on my busy Spring and Summer.  Did you know that one of the potential side effects of chemotherapy is open sores in the mucous membranes of your mouth?  Again, lucky for me, I havn’t had that problem.  Dr. U was impressed, said nice things about my mouth.  While there I mentioned that I might be participating in a clinical trial at U of M, the Bisphosphinate Study and might need his office to send dental records.  He surprised me by mentioning we need to talk about that further, and perhaps even complete a more in depth examination.  He briefly explained how  the mandible (and to a lesser extent the maxilla) process bone, and how the drug in this trial will move through bone, especially the jaw bones which then brings up a concern for the future integrity of those bones.  Hmmmnnnn.  Great that my Dentist actually knows about the study I am talking about, now I have another thing to research a bit further.  In my spare time.  I really am grateful to have a smart tooth guy like Dr. U.

OF COURSE MY DAY WASN’T OVER YET, after I picked up the kids at the new place, went home, made dinner for them, and then directed the boys to write their names on the school supplies that BFF Heather took the time to buy for us.  That means about a million things needed names written on them.  Well, we only had time after dinner to put names on half a million things and jump into the superminivan and dash off to Open House at the boys school.  Charlie had asked me to wear one of the newly borrowed wigs to the school so I didn’t embarrass him, so halfway out the driveway I remembered, drove back in, grabbed the hair and off we went!  (BTW Heather, I’m giving you another BIG HUG for that incredibly thoughtful act……to save me the hassle of pulling together all the school stuff!!)

OPEN HOUSE WENT WELL, boys behaved, even the incredibly anxious child, they were nice to their teachers, nice to each other, found their desks, put away their stuff, nobody got mad, nobody whined, nobody yelled.  Not even me.  So, it was a resounding success!  And school starts in ohhhh about 32 and a half hours.  But who’s counting?

THE REWARD FOR A GOOD VISIT TO SCHOOL was a stop to see Bill’s chickens before we went home.  The kids had fun feeding them yummy weeds, and chicken delicacies, beetles and worms.  I got to help pick tomatoes and drink a beer.  The weather was perfect.  The sky was beautiful.

Arrived home late, Lou went out for Chinese food, so thankfully I didn’t have to make dinner.  We all ate together like a family should…again with no whining and no yelling.

An incredibly productive positive day.  Lucky lucky me!  Can’t wait for tomorrow! 

 

 

*Maumee Valley United Univeralist Church website is: http://mvuuc.org/  check out the calendar…if it sounds like something you are interested in, please come.  Anyone of any faith is welcome!

**I know I have mentioned this before, but it is worth mentioning again…if you know anyone diagnosed with cancer in NW Ohio, you must refer them to The Victory Center.  All services are free for cancer patients.  This organization is worthy of your support…..your passing their information along and/or passing a check their way.  Check them out:  http://www.thevictorycenter.org/

Oncologist to Oprah

May 26, 2009

Friday

Well, we finally got to meet the oncologist, Dr. M., and I’ll say this much, I think he is smart.  BUT-that doesn’t help me make a decision.

So far, this has been exceedingly difficult to even think about, much less write about, and I can’t exactly figure out why.  Maybe it is because I feel so clueless and immobilized by…..what?  fear? the fact that I really didn’t understand hardly anything he said?  And what he said, well, just had to do with my “odds of surviving” this stinking disease.

Tuesday

so at 3:00 am tuesday morning, I am still wondering how do you choose which type of treatment to do after breast cancer surgery?  We even taped the appointment so I could listen to it again (and again and again) but that hasn’t helped much

I think my choices are a clinical trial, or a more conservative chemo plan AND tamoxifan or a hormone blocking clinical trial.

Dr. M favors the clinical trials, but said if it were him, he would do the conservative chemo treatment. I think that is his way of being diplomatic about it all. We see him again on Thursday, I’m supposed to at least have an idea by then what I want to do.

I do think he is a smart, thinking doctor, but it would be nice to have somebody else decide for me.

Oprah

Taped the Memorial Day Oprah show with Christina Applegate on Breast Cancer, hoping for some pearls of wisdom.  It was a nice show, but for me in the “thick of it” right now, it provided no answers.  Shoot.  Actually, it was something said on that show that woke me up this morning.  A BC survivor made a comment which really bothered me, something about how great God was for giving her a second opportunity at life. Of course, the crowd applauded and cooed approvingly.  I so much can not relate to that kind of belief.

The thought that pulled me out of my now-normal uncomfortable sleep was, the universe is just “what it is” and it is what you choose to do with it that makes it turn beautifully for you, or makes life pass by achingly slow.  Good Lord, I have got to  get back to hanging out with the Unitarians again.