Really?

UPDATE BELOW Today I saw a gynecologist at Walter Reed Army Medical Center. She had been in practice over 30 years. She was sort of that cold, hardened, brash type, well, you can picture her. (I do not mean any disrespect at all to our fine women serving in the US military.) But, with 30 years under her belt, I figured I was in good hands.

She, without even doing an exam wanted to tell me I should have my ovaries shut down (this due more in part, I suspect to my breast cancer history being positive for hormone stimulation), and I explained that my oncologist and I have discussed that and that was not the reason for my visit today.

I explained the pain I have been having since August and that it is on my side (rib area) and near my navel, and that my oncologist was able to find it precisely when palpating near the navel, and that
it is intermittent, but persistent, daily, and spontaneous. She did an exam and told me she believed that I may have adhesion's of the uterus but that the chances of them causing problems now 16 years after my last c-section was pretty slim, and that if that is the cause of this pain they would have to take the whole uterus and ovary anyway. Wait, but didn't she just say she didn't think that was the cause of this pain? I think she just wants my ovary! Maybe she keeps them in a jar on her shelf or something. Strange! Oh yeah, and then she proceeded to tell me to stop all coffee and diet cokes for a month and that may be the cause of this. Huh? Then she said that the pain on my side might be "gas". I said, "For 4 and a half MONTHS?" Really?

Never once did she palpate the area of my pain. Only the area of the uterus and ovary, which doesn't hurt at all. My oncologist had suggested an abdominal AND pelvic mri but this gynecologist only put in for the pelvic stating that gyn is her specialty. So I now have a message in to my oncologist to ask him if he might spare me a trip and put in for the abdominal mri along with the pelvic mri which is scheduled for the 12th of January. UPDATE*** My oncologist spoke with the MRI radiologist and said that the contrast given for each type of test is filmed in sequence and that he could not do them on the same day due to the length of time the contrast dissipates, so Pelvic MRI was performed Jan. 12th and abdominal will be the 26th of Jan. The oncologist also told me that he disagrees with my gyn's recommendation to shut down ovary and that this pain does not cycle with menstruation cycles, so he does not believe it to be the cause on on-going pain. So glad to have at least one doc on my side!

Round and round and round we go - where this stops, nobody knows!

Ready or not

Christmas is comin'! Ready or not! This week I am buried in orders from The Taffy Box and my sons are coming home from college, we are hosting a party, attending a party, cleaning, baking, shopping, wrapping, cards to write, cards to read, it is FREEZING, and today I have a long day of appointments with both my oncologist and breast surgeon. Maybe you feel like I do - I DO NOT HAVE TIME FOR THIS!! UPDATE BELOW

Funny how when we read a point like this an e-mail enters our inbox and speaks to us right where we are? That is when I received this video link. (Heather Williams wrote this song after losing her infant son to a heart defect. ) I always reach this point every Christmas when I realize that in the flurry of it all, I tend to forget when Christmas is really all about, and whether or not you believe in Christ, He IS the meaning of CHRISTmas, and is WHY we celebrate! Somehow just stopping to listen to this song made me see how God inhabits the praises of His people (Psalm 22:3). In singing, in worshiping, THAT is how we find Him! So as I rush around today trying to accomplish it all, I will try to take time to pray these words myself, and remember who is in my Christmas. In my busy-ness I think I have been trying to crowd out thoughts about my physical health, and in the process have crowded out God. I've been brought back to Him today. I need Him. I'll update later as to how my appointments go...we are re-evaluating where to go from here in determining the source of this ongoing abdominal pain as well as a 3 month follow up with my breast surgeon.
You'll need to go to the bottom of this page and turn off (pause) the music that plays on this page before clicking to watch the video below. Enjoy!
Update: My oncologist is referring me to a gynecologist to see if perhaps the pain I am having is related to something below the liver, but he was concerned about the extreme pain I have when my abdomen is pressed upon and wants to do an abdominal MRI if the gynecological work up does not reveal anything. He is working to get me in to see one of his gyn colleagues at Walter Reed since my own doctor cannot get me in for several weeks. I appreciate your continued prayers!

Dead End

Today was my colonoscopy. This was after 2 straight days of not eating. Needless to stay I was a wee bit grumpy to start with. Up all night as the prep took affect, then fasting with no coffee this morning, but I made it and had looked so forward to having the answers I have desperately been seeking for 4 months. Why this pain in my abdomen?

The nurse who started my IV got it going on the first try which was a first! Whew! Hard part down! I waited about 30 - 45 minutes and then they took me back to the room where they sedated me and performed the procedure. This is the same place I had my endoscopies in August and October recently, and according to them the same exact dosing of anesthetic drugs to sedate me. Well, that was a disaster today. I did not fall asleep, in fact I was relaxed and awake and screaming in pain for most all of the 27 minute procedure. At every turn in my colon I felt terrible pain. The doctor kept telling me it would almost be over, and for short periods the pain would pass but then he would have to make another turn. I just couldn't believe it. I had never heard of this happening to anyone before. After I went back to recovery, the doctor came to speak with me and told me he didn't find anything to explain the pain I have had for 4 months, nothing to biopsy, nor explanation for the pain during today's events. He said that if I ever have to have this procedure done again he would recommend general anesthesia since he had given me the highest possible dose today and for some reason it did not do the trick. From what I understand, colonoscopies are not normally painful and so patients generally just dose off to sleep during them. So why so much pain in there? I hope to follow up with all of my questions tomorrow with my g.i. doctor and or oncologist. My g.i. doc was not the one to do today's test, but maybe he has some ideas. I feel like I have reached a dead end in this pursuit and and I am very frustrated and exhausted from all of my searching and I am no closer to an answer. Only that when I searched on line I am NOT the only patient that this has ever happened to. It's more common than I realized.

I'm going to go eat some ice cream!

Gratitude

This is the third year I am posting this song in honor of Thanksgiving. Often we think of this holiday as being thankful for our abundance. And we are! But sometimes being thankful means just being grateful for God's provision in ways we don't normally see. Sometimes in lessons learned, sometimes in viewing something differently, sometimes there is blessing in our want. Because in our want we learn to seek for God's presence. On a glad note, my colonoscopy has been moved up to next week! Dec. 1st. Thank you, Lord! Happy Thanksgiving to everyone!

Your Hands by JJ Heller

I hear this song every day on our Christian radio. As I deal with daily pain, I am reminded that even still, I rest in God's hands, He will never leave me. I continue having abdominal pain and nausea but am now scheduled for a colonoscopy n 3 weeks. My prayer now is that my doctor can work his magic and get me in much sooner than that. Will keep you posted!

Lost in a maze

I feel like I am wandering in medical never-never land. Don't know where I'm going, don't know if I'll get there, don't know anything. I am have been through scopes, scans, x-rays, radioactive dye, radio waves, and still have no answers to the nagging question as to what could be causing this pain on my side, and daily bouts of nausea. Like running around in a maze, it seems I run into a dead end at every turn. My liver/spleen/gall bladder ultrasound this past week turned up with nothing either. Both my oncologist and my gastroenterologist called me Friday, explaining that they have ruled out all the normal things this could be and are ready to move on to the more abnormal causes. They They, along with my ob/gyn, have recommended a colonoscopy which I am being scheduled for next. Hopefully sooner rather than later. I'm determined to not give up, though some days I sure feel like it! Thankfully, my docs aren't giving up either.

The End Of Pink October

October's Breast Cancer Awareness month is behind us now, so I thought I'd share a photo of my pink ribbon shirt from the "behind", the backside! For once, I found a not-so-cheesy pink ribbon shirt I love! This, on my birthday, while shopping with my sister who had come out to visit from Las Vegas. We had loads of shopping and out-to-lunch fun as well as kayaking adventures enjoying Virginia's fall splendor! (See photos below)

This week my doctors are trying to determine the cause of my 3-month-long g.i. issues causing me pain in my right side. We are half way there, now, after having had a nuclear scan of the biliary system yesterday. That is the system whereby the liver creates bile, then sends it along to the gall bladder and then onto the small intestines (as I understand it). Well, what should have only been a 90 minute test watching the radioactive tracer make its way through the system, it was evident that the tracer wasn't moving after the 90 minutes. The radiologist came in, took a look at my 90 minute movie (in about 3 minutes) and then asked me, "Have you been ill"? I gave him a quick run down of what my symptoms have been (achy pain on right side, cramping on left side, nausea, taste of blood, etc. short, I know something isn't right in there) , He explained that we had a problem and that for some reason my liver isn't emptying. He then injected me with a drug that would cause cramping and nausea (gee, thanks for that) so that the duct would be forced open and he could then watch and see what happened next. About another hour and a half later, the tracer had then moved along to the small intestines and they sent me home. I now have an ultrasound scheduled Thursday this week (day after tomorrow) and hopefully that will shed some more light on my insides and lead us to a diagnosis. Thanks for your continued prayers!

Friendly Fire

Friendly fire - sounds like an oxy-moron, doesn't it? Believe it or not, just as in real life combat war, it exists in the breast cancer war. I am referring to the battle of the warriors amongst themselves - the women stricken with breast cancer. Sad, but true.

I guess I shouldn't be surprised. Women are competitive by nature, and so this phenomenon just transfers to the ideals they hold most dear in their own lives ---> to their own personal breast cancer experience. And the punches even come from some who are not in the fight, but think they know everything about breast cancer, how to prevent it and how to cure it!

It may be surgical choices (lumpectomy vs. mastectomy, single mastectomy vs. bi-lateral mastectomy), it may be their "type of cancer" (some have better or poorer prognosis than others and feel judged if they gripe about their "lower" staged cancer - Newsflash! Even the lower stages recur in some women), it may be their reconstruction choices or the choice to not have reconstruction at all, or their belief in what causes breast cancer or what may or may not have caused their own. It might be that they love their new body or hate it (newsflash - we don't all love it), but what ever it may be they think every survivor should feel the way they do, and if they don't they need to go get professional help. After all, a woman wants to feel that she made the best possible decision. Sometimes at the expense of making her fellow warrior feeling like she made the wrong decision or that she feels the wrong emotions.

I felt the first jabs of this when I was diagnosed two years ago and received a information packet in my mailbox from a dear old well-meaning friend. She proceeded to tell me that I didn't need chemo therapy, and that most people don't benefit from it, and that my surgeon was only performing a mastectomy so that he could "make more money off of me". I quickly responded to her, explaining that my surgeon is military, in a not-for-profit government funded hospital, and he doesn't make one dime more if he performed one or one hundred surgeries. As for my cancer, if I had opted out of chemo therapy I may not be alive this time next year. Those are just the scientific facts. Clearly, she was unaware.

I heard the term "the good cancer" term again this week and I had to cringe. Would you believe that some people diagnosed with cancers (other than breast cancer) think that I am "lucky" to have gotten my type of cancer? You know, the PINK one, the "good" one, the ..."one that gets all the funding"!? How cruel a jab is that!? Cancer is cancer. Am I suppose to apologize that breast cancer gets more funding? Fact is, breast cancer is diagnosed more than 2 1/2 times that of all other female cancers combined, and so there is more funding towards it for obvious reasons. It is not a personal attack on the other female cancers. Why must we attack each other? Can you see now that cancer is intensely personal?

I remember a conversation I had about 6 months ago with a friend who is actually a 5 year breast cancer survivor but who had been stricken with Mesothelioma, an asbestos induced lung cancer, and when I was trying to explain to her that the type of breast cancer I had was a rare type and was not treatable even just a decade ago, and carries a high rate of recurrence. She stopped me in my tracks and said, "You just don't understand, Koryn. This lung cancer is going to kill me. I have a zero chance of survival. I am stage 4. There is no such thing as a stage 5. You are not terminal. You are a survivor - why can't you just embrace that". What? Happy that I got cancer? The "good" cancer because I have a better prognosis? That was the last time I spoke to her - 6 months ago. She clearly did not want to talk to me about hope or courage. For her, these terms were meaningless. She had poised herself on the other side of the battle filed, the "losing side" and did not want to "fraternize" with someone like me. Newsflash - any cancer has the potential to put a woman on the losing side.

Maybe it is because this month of October has been awash in pink everything, but I see the breast cancer forums everywhere on line a buzz with talk about how this or that is the latest greatest, and you should do this or that, or you shouldn't feel that way - There is a whole lot of unsolicited advice to breast cancer patients who are newly diagnosed. Sadly they must feel like they are bombarded with ideas, suggestions and conflicting medical statistics and none of it from educated, trained oncologists. Only a woman with an opinion. There are plenty of those to go around! And some of them insensitive, unintentional, yet cruel jabs at her most personal tragedy. Am I guilty of it myself? Probably so. We women are good at both offending and being offended when it comes to personal issues.
And there's no doubt, cancer is intensely personal. That is why we poise ourselves to fight, and unfortunately we punch at the wrong target.

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Promise Me

Anyone who knows me knows that I am not really a reader of books. In fact, I much prefer to be a "doer". I have never been able to just sit and do nothing but read, and really, it is quite difficult to try and do anything else while reading. I can multi-task at any other activity except reading. I can talk on the phone while folding twelve loads of laundry and I can whip up a 5 course meal while unloading the dishwasher and making a grocery list, but isolate me from my normal flurry of activity to sit and concentrate on a book, never. Not unless it is a riveting book, one that absolutely draws me in and won't let me go!

Well, a few days before this trip, I received just such a gem, the book, "Promise Me", by Nancy G. Brinker. It is the story of how the bond with her sister, Susan G. Komen, began the global breast cancer pink ribbon movement. Nancy Brinker is a gifted writer, accomplished at literally everything she has undertaken in life, and is fiercely devoted to protecting the memory of her beloved "Suzy". In it, she details the years and travels she had with her sister, the polar differences in their life choices and yet the ultimate respect and admiration for one another's talents, the painful and tragic breast cancer her sister developed, the agony of losing Suzy to a disease that she herself was struck with years later, and remarkably survived. The choices, the treatments, the fears, the judgements, and the realization that many women do not have options or treatments because not enough was or is being done - this is what grabbed hold of me throughout her story. It made me realize that much of the treatment I received was a direct result of the work done by the Komen foundation, and yet as I read her words I felt as though she was my friend, sitting right in sofa beside me telling me her story. She is that transparent, that real, that honest and that caring. She truly has a heart for women like none other. I cried at many points throughout the book with just sheer gratitude for all this woman has done and the fact that I can call myself a survivor today because of it!

Everything that Nancy Brinker has set out to do in the 30 years since Suzy died, was in response to the promise she made to her in her dying days to find a cure for breast cancer. And in 30 years, billions of dollars have been raised, advances made in diagnostics, surgical options and chemo therapies developed that were not available back then. All because of the Susan G.Komen Foundation, which is the single largest breast cancer fund raising organization of all time.

A sister's love.

A will that found a way.

A Promise.

Now the torch is passed to me and to you...it is a promise we must commit to for our daughter's, our sisters, and our friends. Check out The Army Of Women, a global force working to enlist participants both survivors and women never diagnosed, to participate in various clinical studies with the purpose of finding the CAUSES of breast cancer, which is now believed to be the only path to a 'cure'. Scroll through the studies currently offered to see if you can participate, forward to everyone you know. Research is great, but they need volunteers willing to cast themselves into the fight. I registered, won't you? Promise me?

In Retrospect

As I reflect back 2 years to when I was diagnosed, I am reminded once again of the many blessings revealed to me and that they very hand of God Himself was on me during my darkest hours. This is a video I made just after I completed my first half of treatment. Feel free to pass it along to someone you know who may be having a hard time. It could be a physical struggle or a relationship struggle, a financial struggle, or even life and death struggle...whatever it is, I pray that it gives some shred of hope to someone who needs it today.

A Change of Pace

I am in Missouri this week, babysitting my 2 year old nephew and 5 year old niece. Ten days of stepping back YEARS in my own life of 6 a.m.wakeup calls and bed time giggles and story time.

The joys of childhood's innocence! There is nothing quite like that wide eyed wonder of falling leaves, spider webs, starry skies and making pancakes!

Today we spent the day at a working farm with barn animals, a place we use to take our own kids 15 years ago when we lived here. A dry, sunny Indian Summer day, and perfect for our picnic too!

I captured lots of great photo shots (even showed my niece how to get a great pose! She took this photo of me) - and we enjoyed a visit with grandpa and grandma in the afternoon.

Even though this is an exhausting pace,it is a wonderful change of pace, and one that I am thoroughly enjoying! Read more below...

Although I am on a bit of a working "vacation", I am ALWAYS in the fight against breast cancer, and reading, researching, and collecting all of the information that I can.The month of October has no shortage of resources! Click on this link or directly on the video at the bottom of this page to listen to what Dr. Susan Love has to say about where we need to go now in our fight, and how the pink ribbon awareness campaigns of 25 years have worn out their welcome....what we need now is to END breast cancer.

Cancerversary

Anniversaries come around every year, and usually they are a happy time of celebration. "Cancerversaries" are celebrated every year by survivors everywhere as another year passes since their diagnosis, and they can claim another year of health and survivorship!

Today, October 1, is my 2 year cancerversary! Sometimes it feels like just yesterday I heard those fateful three words, "You have cancer", and other times it feels like that was somebody else's life, or a nightmare that I was happy to wake up from. Last year's 1st cancerversary was celebrated with pink ribbons and pink ribbon bagels at Panera and pink roses, pink sugar ribbon cookies, and shared times with good friends (other survivors) . This year I feel a little different and I can't fully explain why, but it just feels different.

During my first full year of fighting cancer I found some people I knew who turned out to be survivors of breast cancer, yet I never knew it until they learned about me. I had read about such people too. I thought, "How could a woman just turn her back on this disease, and walk away into the fog, leaving it behind! How could a woman move on as if this never had happened to her?" I almost felt betrayed by these survivor sisters as if they had denounced their membership in our special "club". I couldn't understand it. Now, 2 years later, I do understand it because I feel myself trying to run away from it too. I find myself not telling others that I am a survivor the first time we meet. I find myself not allowing to be identified as a survivor. And maybe that's because I don't look sick anymore, and don't have to justify the manly short haircut. I feel ready to blend back into society as if nothing ever happened. I even determined on our European vacation this summer to turn over a new leaf this year and not surround myself with other survivors anymore. I had decided not to counsel women on the hotline anymore. To stop reading all the breast cancer books people had given to me. It had all become just too overwhelming. The reality is that I wasn't coping well with what I had been through, and this constant barrage of information, articles, news pieces, talk about it, was weighing down on me. I was becoming angry and bitter about the reality of what breast cancer does to women, and yet new women are diagnosed every single day. We have MORE breast cancer, not less, and yes fewer women are dying of breast cancer, but that doesn't eliminate the after effects that treatment brings upon a woman.

In the last couple of weeks I have begun to see the "pinking" in the stores. You know, pink ribbons showing up on every soup can and product being sold in an effort to raise awareness, and yes, bring in funds to fight breast cancer. Part of me wonders just how much of the money raised ACTUALLY goes into fighting breast cancer, or is this just a way to appeal to the public's sense of concern, and rake in more of the almighty dollar. We will never truly know. Like Christmas, the pinking comes earlier and earlier every year. It is sadly an all too real reminder for me of what happened to me that October 1st, and of the months following that would bring so much pain and sadness into our family. Like the loss of a loved one, whose passing strikes an anniversary date every year, it is a little hard to get through, and the date floods the mind with mixed emotion.

I know I should feel happy that I survived this and I am here 2 years later to tell the story! I realize that, and I AM happy for those things! The sad truth is, though, that every year that we go without a cure, another woman will hear those dreaded words, and another life will forever be changed. Every October shouts of celebration and woo-hoos are given up for survivorship but nothing is ever told about the realities that a breast cancer survivor must survive with. The physical trauma, the scars, the after effects from chemo therapy, the side effects of drug treatments given to prevent cancer's return, the daily fear of recurrence, the hormonal changes, the constant testing and retesting which causes one to live in a state of post traumatic stress much of the time....the list goes on. But surviving should be enough. Why isn't it for me?

Survivors survive in different ways, and I know that the way I feel today may not be the way I feel in 6 months or 6 years, but it is what I feel. I understand why some women just say "Enough already". They want to move back into the realm of reality they once knew. That safe haven of innocent bliss, before cancer. I feel that way sometimes too. It makes it a bit more bearable. Yes, I will always be a survivor, and I will continue to reach out to those affected by breast cancer. Maybe I am just ready for a cancer-vacation.

...... Two years is a long time to be in the trenches.

Yesterday's PET scan did not reveal anything that could be causing the abdominal pain I have been having. What now? Well, I haven't talked to my oncologist yet, but I did meet with my gastroenterologist who has me scheduled for another esophageal scope, dilation and biopsies in a month. Now that I can relax that they are not biopsying for cancer (that is what a PET scan is designed to rule out), he is looking to find if I have a condition called Eosinophilic Esophagitis which he says it appeared to him as being both visually and with my symptoms, but he has to be sure before treating for it. It is believed that some patients with this also have allergies. I do not have allergies, but that's what we said when my lips kept swelling up last year. :) It could be that chemo therapy has somehow had an affect on the gastro intestinal tract, which it has been known to do. Nevertheless, EE can be treated using dilations to widen the esophagus, as well as inhaled steroids to shrink swelling. Weight loss, loss of appetite, nausea, abdominal pain, scar tissue rings, regurgitating food, food becoming stuck, globus sensation in the throat, are all symptoms I have and all are listed in conjunction with EE. Frustrating as all of this is, I am learning to trust God No Matter What<---link to song). I have spent the better part of 2 years now chasing down medical issues, and I am way too young for that! :) I didn't expect to still be doing this 2 years after breast cancer entered my world, but nothing surprises God. I appreciate your continued prayers. Blessings!