I'm here...

I am back from Boston, and what a wonderful honor it was to spend my days with Stacy (dissertation committee member), Gina AKA the wolf coach) and Cheryl (spiritual messenger ~ she knows when to pray for me when I don’t know when to pray for me). We had a fabulicious time writing, meditating, collaborating and being present with one another. I am elated, tired, nourished and sore…..
When I travel I like to people watch….leaving Sky Harbor offered just as much entertainment as leaving Logan….saw a lady with a baby stroller for her dog, listened in on a couple from South Africa talking about reverse apartheid…yes, hmmm….and watched people rush for their planes….they were funny….dropping stuff, body parts flapping….I couldn’t make this stuff up….I got to Boston actually Sunday because I took the red-eye and slept most of the way. Once I arrived at Stacy’s, a hot shower, clean clothes and a good meal made for a lovely Sunday. The next 2.5 days were filled with everything goodness…..I even shopped a little at Harvard, I felt smart just being on the campus and dinner at one of my favorite restaurants….Legal Seafood.
Although many still call me crazy for continuing on with my doctorate degree, it keeps me grounded and motivated to make a difference….sounds corny but it’s true….I want to bring empathy to professional sports organizations and by dang-it I’m gonna do it….creating stormy seas…..some of my harshest critics are family and they know our family is strong and cut from a metal cloth so what’s the big deal?

So I am listening to my body today, I have help at the house so I am alleviated of the stress of too much dirt in my space….hubby cooked a dinner ahead so that’s taken care of BUT I have tons of papers to grade and a few requirements for school to complete before Monday…..I will get it done, I have no choice….

I have come across some good sayings this week….. Larry said this one: The way you do nothing, is the way you do everything ~ and Jen said this one: ....Movement creates life; stillness creates love; to be still and still moving, that is everything……

So while I am still I will still be moving….I was reminded to not let the stressors of life interfere with my recovery or my goals….I came home to some crazy emails and letters, but I am surprised how I am easy to ignore them because in the grand scheme of things….I am looking for the vein in the leaf…SAVING MY LIFE…..

Progress

Today was a fantabulous day (you know I like to make up my own words) and even though it’s early in the day I am about to go to bed.... Why?? After I took the kids to school, I did my first trip to the grocery store. My first trip in over a month BY MYSELF and it felt good. These are the little things in life that we all take for granted until it’s snatched away by the likes of cancer….well I’m here to tell cancer that I am getting stronger each day, and as the kids would say…nana nana boo boo….. to damn cancer….I got this beat!!! This disease picked the wrong b to mess with....

Okay back to my day….I also got to pump my own gas too….now this may not sound like a big deal to some, but to me gaining independence is a big deal and I know I am impatient, stubborn and hard-headed, but walk a mile in my shoes I guaran-damn-tee you would be too….

I get to my docs office with the hopes….high hopes that I will begin my fills. I have been doing everything they told me since my last visit….resting, massages, no lifting and resting.

My surgeon’s wife is also in practice with him and when she walked in I could see why he married her….she’s smart and beautiful. I’m not one of these chicks that is a chick hater…I call a spade a spade and she was downright F-I-N-E…..If I was a dude, or a chick into chicks I would have flirted with her….right there out in the open….now my surgeon is nothing to sneeze at, he is F-I-N-E as well so it would stand to reason his wife would not look like dog poo….5’6, 110lbs, 7.5 size shoe and a booty tight enough to rocket a cherry to Kentucky….but I wasn’t looking that hard….hahahahahaJ

She checked my incision, told me my edema was softening up nicely and that I would receive my first fill….I wanted to kiss her….seriously…..

I received 50cc on each side and even had some feeling. Ya see the nerves are temporarily damaged with this type of surgery and the fact that I am having some feeling means I am making progress….again I wanted to kiss her….seriously…..

Together, patience and prayer are powerful…I have been sad, most days happy, but I have had my moments. I believe I am on the upswing to my journey. While this may look like a small tragedy and people are compelled to feel sorry for me or question why, I am reminded by my dear friend Diane, who not too long ago went through the same ordeal…says why not you? So my day was a busy one, I will pick up my kids, get dinner and take my tired self to bed today....I have had progress in my recovery and that has worn me out;)

So as I am patient in my healing process I continue to learn more about the disease and how I can help when I am fully recovered. I am considering doing the 3 day walk in October, maybe not the whole 3 days but at least the commitment for the 5K. Women should not have to suffer and in my particular case early detection is what SAVED MY LIFE…..

Healing.....

Well I continue to heal and my doctor has weaned me off of the percocet. At first I thought he was a looney tune....a big froot loop if you will.....to tell me to go from percocet to Tylenol....it's like going from methamphetamine to chicklets.....the first few days were rough, luckily I had Kevin's sister here, I would have gotten absolutely nothing done and no rest because I would have stressed about not getting anything done having no rest....terrible cycle indeed....but as I stated thank goodness Debbie was here.

The edema seems to be softening up, that's what the doctors want....but there is still some hardness and it is STILL uncomfortable......BUT....there's a light....a small glimmer of light and while this may not be much for some it is a huge deal to me....I can sleep on my side!! For the past month I have been perched up in the bed night after night like a mummy and if I move I wake instantly. Now I can sleep for about 2 hours at a time on my side....both sides and it's a little more comfortable even if it is temporary.

I plug along with school, knocking out another A in my last class. I have well exceeded my own expectations and realize that my illness is not an excuse for weakness or failure. Some may call me crazy for continuing, some have had the nerve to say it to my face....but walk a mile...half a mile...in my shoes you would be surprised how much determination you can muster up when faced with an adverse situation....don't get me wrong, I absolutely think I'm crazy, but at least I am smart crazy;)

I realize that GOD has a plan that will only be revealed in his time..... it seems like he's taking his sweet time with me because he knows I'm impatient so this is a test and a lesson......I think.....James 5:7-8 consistently tells me to be patient for the plan and purpose are in HIS hands.....so with that.....I continue to SAVE MY LIFE......

My oh my....

My life has been hectic in the last week....mainly due to my youngest son having the flu....there should be a law that when a mother is ill children are not allowed to be ill....

I talked to a sorority sister and my twin cousin sister recently and they offered some great insight and advice. First my Soror confessed to me after I received my diagnosis she checked her breasts everyday...she had her husband check her breasts(which is not a bad thing) and became paranoid. I was told by my caregivers that this would happen. My caseworkers stated that people may become overly sensitive and exert too much worry on themselves...Candace fits the bill!!!

My twin cousin sister who is also a Katrina survivor stated how she was tired of people who are dealt a raw deal feeling sorry for themselves or using their disabilities as a hinderance to create a better life for themselves.....If I am being honest....I feel like that sometimes, not as often as some but at least once a week....am I pathetic??? Human maybe but not pathetic.....I think.....'(

I continue with my healing process the best I can, somedays I do more than I should but I would feel less than productive if I didn't....my sister-in-law...Debbie is here(she's gonna kill me for using her name...hahaha, she will be gone by the time she reads this) and she is keeping the laundry done, kids clean and me in line....I shoulda married her...hahahaha.....!!!!

I have a massage therapist too, my friend Paige comes to the house on Mondays...she's great....if you want her number I will be more than happy to provide it...

So my community is in place to provide me with the love and support I need, I am STRUGGLING to realize that my expected date of recovery is not a finite date and we all continue to SAVE MY LIFE....

Two steps forward....Three steps back....

Sometimes I feel like I can't get ahead in this process and get on with my life....My plastics doc confirmed today that I have edema....not the lymphedema like I thought but I do have a form of edema. He stated it's not that bad...yea right he doesn't have to live with it....and would not do my first fill up until the swelling and hardness went down a little bit....WHAT??? Is he crazy? I waited a whole 2 weeks for this, he's a crackpot....Now I have to say, he is a very....VERY handsome man but at that moment he looked like dog s**t....I was waiting for Ashton Kutcher to come out and tell me I've been punked.....he gave me some additional exercises, told me to walk more and get a massage.....will do my best is what I told him....not what I wanted to say, but it's what I told him.....

So I'm back to just being patient....and it sucks.....

I will prepare my mind for Easter weekend, have small plans with the family and continue my journey with a little more patience.....Philippians 1:6 tells me "GOD began doing a good work in you, and I am sure he will continue it until it is finished when Jesus Christ comes again".....helping and healing to SAVE MY LIFE.....

Paranoia and patience.....

Okay, so my doc appointment was great.... sort of. He confirmed that I DON'T have lymphedema and that what I am experiencing is "normal"....swelling, pain and all. The bag of marbles under my arms are "normal" and the nubs where my breast used to be look good even if they hurt like hell. I have a new way of looking at my pain now. It's still temporary and I do not have additional issues to deal with....he also maintains that a stress free environment will allow me to heal sooner and healthier....I must remove all thoughts of choking stupid people and as they keep telling me...show the negative ones to the door....much better than choking....

I told him I was not self-diagnosing but I am not sure he believed me....in fact I'm sure he didn't believe me.....He looked over my stitches and was very pleased with himself....he even told me I was going to have great cleavage when my reconstruction was done.....If I could have bottled the look on Kevin's face I would have...priceless.....I'm considering selling tickets for a peek of my cleavage....not sure how many laws I will be breaking, but I would consider paying taxes on the income.....

I continue to be showered with love from my support community....the dinners especially are amazing. I will need to start doing some serious exercise because EVERYONE brings dessert, brownies being the consistent one and I will be 800 pounds if I don't stop soon. My doc also told me that I could travel to my writer's retreat in Boston at the end of the month so I have that to look forward to as long as my other doc says it's OK as well. I can't wait to be flying the friendly skies and receiving my writing nourishment!!

I did tell my students on Thursday and will tell my Tuesday group tomorrow. They were in awe, supportive and learned a lesson. I realized I had told everyone but them and I was doing them a serious disservice. They deserved to know and I am glad I told them. Who knows how many of the men which makeup more than 1/2 of my class will tell an important female in their life and how early detection can save lives. Who knows how many of the women will now go and get that checkup they have been putting off....

So in this moment I will have patience, lessen my paranoia and move into this week focused on healing and preparing myself for that fabulous cleavage I've been promised:) Moving along one day at a time...SAVING MY LIFE.....

Patience.....

I feel awful. What a way to start a blog entry huh? But it's the truth. I feel awful that I have two what seem to look like bags of marbles under my arms that are uncomfortable as heck (it's Lent, I'm trying to cut down on cussing). I feel bad that I cannot do more independent things for myself and my family....I feel bad for all of the people who do not have access to the type of care I am receiving and will ultimately suffer worse than I and here I am whining....I just feel awful.

I feel bad that I have not replied to some phone calls, emails and I can't seem to get my thank you notes out fast enough. I feel awful that ugly Christians are rearing their head again and I am not in the mood....and I can't fight back like I want to. I feel awful that my good friend Jen who is also my teammate for school helped me with my section for our team project but hopefully by editing, I did my part....somewhat. I feel awful for all of the people who have gone out of their way to help us...I would do the same in a heartbeat for all of the moms and dads (Jimmy, Jim and Bobby) but I do feel bad. I just realized the other day that my surgery isn't even a month old....I'm just impatient.....or is it the percocet?

I need patience. Galatians 5:22 is a reminder that patience is more than a skill it is a gift from the Holy Spirit that gives me a nudge about how patience is also about doing GOD's will. Hebrews 10:36 tells me that I need endurance to do the will of GOD and receive what he has promised.

I am allowing pain to control what I already know what has been laid out for me. I was talking to some moms at choir yesterday (I don't sing my youngest son does) and we talked about how the blessing of my challenge is going to be what GOD has in store for me and how GOD will use me!! How exciting indeed, but right now I feel awful....physically......or is it the percocet?

I go to the breast surgeon tomorrow and he will do what he can to alleviate this pain, surely give me more wacky pills as a part of the regimen and hopefully I will be on my way to recovery. I have included an email below of a sorority sister whom I do not know, but we have people in common that we know. Take the time to read you could.....SAVE A LIFE.....


This is the story of Kathy West
As all of you know, I have Primary Peritoneal Cancer. This cancer has only recently been identified as its OWN type of cancer, but it is essentially Ovarian Cancer.

Both types of cancer are diagnosed in the same way, with the "tumor marker" CA-125 BLOOD TEST, and they are treated in the same way - surgery to remove the primary tumor and then chemotherapy with Taxol and Carboplatin.

Having gone through this ordeal, I want to save others from the same fate . That is why I am sending this message to you and hope you will print it and give it or send it via E-mail to everybody you know.

One thing I have learned is that each of us must take TOTAL responsibility for our own health care. I thought I had done that because I always had an annual physical and PAP smear, did a monthly Self-Breast Exam, went to the dentist at least twice a year, etc. I even insisted on a sigmoidoscopy and a bone density test last year. When I had a total hysterectomy in 1993, I thought that I did not have to worry about getting any of the female reproductive organ cancers.

LITTLE DID I KNOW. I don't have ovaries (and they were HEALTHY when they were removed), but I have what is essentially ovarian cancer. Strange, isn't it?

These are just SOME of the things our Doctors never tell us: ONE out of every 55 women will get OVARIAN or PRIMARY PERITONEAL CANCER.

The "CLASSIC" symptoms are an ABDOMEN that rather SUDDENLY ENLARGES and CONSTIPATION and/or DIARRHEA .

I had these classic symptoms and went to the doctor. Because these symptoms seemed to be "abdominal", I went to a gastroenterologist. He ran tests that were designed to determine whether there was a bacteria infection; these tests were negative, and I was diagnosed with "Irritable Bowel Syndrome". I guess I would have accepted this diagnosis had it not been for my enlarged abdomen. I swear to you, it looked like I was 4-5 months pregnant! I therefore insisted on more tests

They took an X-ray of my abdomen; it was negative. I was again assured that I had Irritable Bowel Syndrome and was encouraged to go on my scheduled month-long trip to Europe . I couldn't wear any of my slacks or shorts because I couldn't get them buttoned, and I KNEW something was radically wrong. I INSISTED on more tests, and they reluctantly) scheduled me for a CT-Scan (just to shut me up, I think). This is what I mean by "taking charge of our own health care."

The CT-Scan showed a lot of fluid in my abdomen (NOT normal). Needless to say, I had to cancel my trip and have FIVE POUNDS of fluid drawn off at the hospital (not a pleasant experience I assure you), but NOTHING compared to what was ahead of me.

Tests revealed cancer cells in the fluid. Finally, finally, finally, the doctor ran a CA-125 blood test, and I was properly diagnosed

I HAD THE CLASSIC SYMPTOMS FOR OVARIAN CANCER, AND YET THIS SIMPLE CA-125 BLOOD TEST HAD NEVER BEEN RUN ON ME, not as part of my annual physical exam and not when I was symptomatic. This is an inexpensive and simple blood test!

PLEASE, PLEASE TELL ALL YOUR FEMALE FRIENDS AND RELATIVES TO INSIST ON A CA-125 BLOOD TEST EVERY YEAR AS PART OF THEIR ANNUAL PHYSICAL EXAMS.

Be fore warned that their doctors might try to talk them out of it, saying, "IT ISN'T NECESSARY." Believe me, had I known then what I know now, we would have caught my cancer much earlier (before it was a stage 3 cancer). Insist on the CA-125 BLOOD TEST; DO NOT take "NO" for an answer!

The normal range for a CA-125 BLOOD TEST is between zero and 35. MINE WAS 754. (That's right, 754!). If the number is slightly above 35, you can have another done in three or six months and keep a close eye on it, just as women do when they have fibroid tumors or when men have a slightly elevated PSA test (Prostatic Specific Antigens) that helps diagnose prostate cancer.

Having the CA-125 test done annually can alert you early, and that's the goal in diagnosing any type of cancer - catching it early.

Do you know 55 women? If so, at least one of them will have this VERY AGGRESSIVE cancer. Please, go to your doctor and insist on a CA-125 test and have one EVERY YEAR for the rest of your life.

And forward this message to every woman you know, and tell all of your female family members and friends. Though the median age for this cancer is 56, (and, guess what, I'm exactly 56, women as young as 22 have it. Age is no factor.


A NOTE FROM THE RN:
Well , after reading this, I made some calls. I found that the CA-125 test is an ovarian screening test equivalent to a man's PSA test prostate screen (which my husband's doctor automatically gives him in his physical each year and insurance pays for it). I called the general practitioner's office about having the test done. The nurse had never heard of it. She told me that she doubted that insurance would pay for it. So I called Prudential Insurance Co, and got the same response. Never heard of it - it won't be covered. I explained that it was the same as the PSA test they had paid for my husband for years. After conferring with whomever they confer with, she told me that the CA-125 would be covered.

It is $75 in a GP's office and $125 at the GYN's. This is a screening test that should be required just like a PAP smear (a PAP smear cannot detect problems with your ovaries). And you must insist that your insurance company pay for it.

Gene Wilder and Pierce Brosnan (his wife had it, too) are lobbying for women's health issues, saying that this test should be required in our physicals, just like the PAP and the mammogram. PLEASE TAKE A MOMENT TO SEND THIS OUT TO ALL THOSE YOU CAN. BE IT MALE OR FEMALE, IT SHOULD NOT MATTER, AS THEY CAN FORWARD IT ALSO TO THOSE LOVED ONES THEY KNOW.

IF YOU HAVE A PROBLEM WITH FORWARDING SOMETHING AS IMPORTANT AS THIS, HERE'S A LITTLE HINT THAT MAY ASSIST YOU WITH YOUR DECISION ~ JUST PRETEND THAT THIS IS A JOKE, WHICH IT CERTAINLY IS NOT, AND SEND IT

Unrealistic expectations....

I am really disappointed. I honestly thought I would be feeling better, able to move around better and be more functional. I am driving but that is even limited. I cannot grocery shop, take the box to the post office for my cousin or some moments make myself something to eat. It's frustrating.....

I have great family and friends that are able and willing to do for me but I feel like I am a burden. I hate to be pitied, I think it's pathetic to pity someone, but I physically cannot do some of the things I want to do so I'm stuck. I had a conversation with some dear friends today and after telling me to shut up, explained that this is what friends are for. Well, duh I know that....I am a good friend....I would do whatever needed to be done for Elisa, Val and Yolande and the many others out there, so why can't I just let myself relax? Why can't I accept the help without feeling guilty and burdensome? It's these damn wacky pills making me feel this way I just know it.....

Okay, I have new issues. I think I am developing a condition called lymphodema. I am not self-diagnosing I had a form of this with my c-sections. It's where the fluid and tissue in the surgical area builds up and thickens and becomes hard. It's very uncomfortable and is getting on my nerves. I go see both docs next week so we will get this resolved....and hopefully I will heal better....notice I said better not faster.....

I would like everyone to know what a great son I have....my oldest. These past 3 days without my mom have been easier because of him. He has set his alarm clock to get up 15 minutes before everybody, gets himself together, gets up his brother and sister which is no easy task and fixes them breakfast. He does a few chores before I take them to school. He was not asked to do any of these things he just has. I feel guilty because he is 12, but he is also a young man who is coming into his own, gaining insight into what it means to be responsible, and he generally is a wonderful child. I am truly blessed. He told me today thanks for raising him and that made my heart swell....or it coulda been the percocet, I can't tell these days.....but I do know he's helping to SAVE MY LIFE.....