Lift Me Up

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Survival – Learning To Cope

This month, 3 years  ago, was the beginning of my cancer journey. My October 1st diagnosis cancer anniversary is approaching this week. What should be a time of celebration and victory, surviving 3 years, is, instead, a time of high anxiety and stress, it seems. For the past month I have lived on the edge of dread since discovering a new lump in my other breast. FINALLY, this week it was revealed that it is only a simple cyst and nothing to worry about. Another bullet dodged. This time.

All the while, pink washing is happening around me, around all of us. You’ve seen it, undoubtedly…pink things for sale everywhere you look, from Tic Tacs to fabric scissors and in every string of television commercials. For a breast cancer survivor these things bring a mix of emotions.  A “love / hate ” relationship with PINK.   For all of the fund raising and walking, and emphasis on awareness, we seem nowhere closer to a cure than we were 3 years ago. The advances being made are primarily in the clinical trials for metastatic breast cancer…stage 4…the worst kinds, the rising numbers of young women dying from the disease, having had it spread to other parts of their bodies. More women, not fewer, are being diagnosed with breast cancer every year. Where are we going wrong?

I have had 3 weeks of B-12 shots now, and will continue weekly for the next couple of weeks and then they will test my levels to see if I can go just once a month. I haven’t noticed a huge change in my energies, but small gradual changes, like I crash and burn  at 4 PM instead of 11 AM. I’ll take that.

I will  have a surgical biopsy of a mole on my abdomen next month (which was removed in May) and showed atypical cells in the pathology report. It grew back. “We never like to see that”, my dermatologist said.  He sent me to the dermatological surgeon, who determined it needed a different type of biopsy, the type with stitches. Oh goodie! So much for my 2012 bikini debut! The surgeon is booked for the next 4 weeks.Wait and anxiety – they go hand in hand.

That same week in October (17th) I will also have a uterine biopsy via a D & C operative hysteroscopy under general anesthesia. This is to determine the cause of what has been a year long battle of female problems, and discoveries on my pelvic MRI and Ultrasounds.  Please pray the findings of that will be easy to diagnose and treat.

So you can see that October, in and of itself, is a month of anxious thoughts for me but there are a lot of additional concerns on my plate this October.

For all of the ups and downs of health related issues, my by-line of this blog remains the same…

“Surviving Breast Cancer By The Grace Of God“.

This entry was posted on September 26, 2011. 4 Comments

A Smoking Gun?

It’s been a year since I began playing detective in my own health answers! This week brought some news that may be the smoking gun in my year long pain in my right side. When I approached my oncologist several weeks ago to explain that I was feeling unusually fatigued, he ordered up blood work. That was when my B-12 came back very low and he started me on oral Rx strength supplements.

One month later, I felt no better so he re-tested me and although the numbers were rising (which is a good sign), they still were not near where they needed to be so he ordered up another test (which I turned up positive for) of a very rare condition called Anti Periental Antibody causing Megaloblastic Anemia. This means that my stomach lining is not able to absorb B-12 and my liver could be using up the stores it has, hence the liver pain. He is referring me back to gastrenterology. As I am beginning to read more on the net about these disorders, I am learning that they can be a side effect of having received chemotherapy. He believes that it may be treatable using an antibiotic that stays in the stomach and kills off the bacteria that are destroying  my body’s ability to produce mechanisms for absorbing nutrients.  He wants me to discuss this with the G.I. doc. Funny thing is that this all began when I was referred to G.I. for the esophageal strictures I had last year. The G.I. doctor never considered this condition, possibly because it is only found in 2% of the general population.  Needless to say, I think we are on to something!  Here’s to keeping my fingers crossed that this might lead me to the relief I’ve been waiting for!

We are going to the Maryland beach this week with all 4 kids, renting a condo, and spending some much needed rest together! Tim’s condition has not improved but he has faxed all of his records to a specialist at UVA Medical Center who he has been authorized to receive a 2nd opinion from.  While a high percentage exists that Parsonage Turner Syndrome is the correct diagnosis, his right hand pain and numbness, loss of dexterity and certain other signs point to a possible spinal cause. This doctor is a neuro-spine surgeon.  In either case, we pray that he can find some relief soon and even a few days laying on a beach will be a nice break from daily physical therapy and office work.

“Til next time!

Dog Tired

Maybe it’s just the dog days of summer, or 100* temps in July, but my fatigue continues and causes me to feel like taking a nap every day after just being awake a few hours. This is after a full 8-9 solid hours of sleep at night. More likely, it is my B-12 deficiency, a form of anemia. It is a “tired” unlike even chasing the 4 kids under age 5 that I had under foot may years ago! I can only describe it as a close 2nd to the fatigue I had during chemo….like the blood has been drained from my body. Yeah, like that. Where’s that pillow? I have closed my business for the next couple of weeks while I try catching up on outstanding orders and work on things around the house that have gotten behind.

My oncologist called last week to say that although my B-12 numbers are climbing in the right direction, they are not what they should be (at only about half the normal level) and he wants me to be re-tested in 5 weeks. I am continuing the daily Rx strength B-12 supplements. I’m hoping we can get to full levels in that time and start to feel more energetic again. August has me scheduled for a pelvic ultrasound, a mammogram and a dermatology follow up. Are we having fun yet?

Last weekend we went up to New York City to take Keith and Kelli to  Broadway show, starring our long time family friend and 2011 Tony Award winner, Norbert Butz, in Catch Me If You Can. (Click on the photo, then the little arrows to the right and scroll through the rest of the photos.) What a thrill! We surprised the kids by arranging to meet Norb backstage after the show.  He was so gracious to take the time to talk to Kelli about her musical interests, and she was star struck, also meeting the other lead, Aaron Tviet when she asked him to take our picture (not realizing it was HIM!)

Monday morning found us back at Walter Reed meeting with the rehab doctors for Tim’s condition. He continues to battle through the paralysis (left side) and numbness, nerve pain and limited mobility on right side.  He will be seeking a 2nd opinion from a renown spinal nerve doctor at University of Virginia in the coming weeks.

Fortunately we have the boys home from college for another couple of weeks to do things around the yard and house. After August 23rd we will officially be empty nesters!  We plan to try squeezing in a family beach trip in a couple of weeks and enjoy some rest on the sands in Maryland’s shores. “Til then! ~ Koryn

Central Park, NYC

Blessings

It’s been a long time since I have posted. Life has sort of consumed us these past few weeks. Summertime should be a time of rest and relaxing, but we have been spinning our wheels to and from the doctors, and it seems to be a trip in futility lately. “What if a thousand sleepless nights are what it takes to know You’re near”…the words of this song ring very true in our house right now – for 7+ weeks Tim has suffered through what is now believed to be Parsonage Turner Syndrome, a rare disease that attacks the brachial plexus nerve bundles of the spine and shoulder, creating pain, numbness, and weakness and a now palsy in his left arm and severe, sharp pains in his right hand, making even the simplest tasks impossible.  Physical and occupational therapy appointments flood his calendar while he juggles full time work at  the Pentagon. Fortunately he has a very understanding work environment. He is seeking special equipment for keyboard and phone use to make his job easier, and there is a place within the building that will provide those. When he went to check it out the woman working there had no arms at all.  He said that was a real wake up call. We are blessed.

The neighbors and our kids are pitching in to help with the work Tim normally would be doing at home during the summer. Kayaking, golf, fishing, are all out of the question for now. The prognosis is a 2-5 year recovery with varying degrees of outcomes. That is a tough pill to swallow for someone who has always been very active, NEVER sick, never had surgery or even a sniffle.  So we go to the movies, browse Best Buy and Costco, eat out and try to stay busy with friends.

The little things found here and there on my recent MRIs and Pet Scans now pale in comparison, and while I am seeking to get to the bottom of a nearly year-long pain on my right side, it is not debilitating and I will get answers when it is time. For now, I am waiting to hear from my ob/gyn as to her thoughts on recent test results.  I leave on Wednesday with Kelli for Pittsburgh for her American Idol audition, which we are all very excited about! She leaves for college in just 6 weeks, a very exciting but sad day in our household, well, at least for me and Tim who are about to become Empty Nesters! I hope you’ll enjoy the song below and remember, as we are, that God’s ways are not our ways, but His love is deep. We covet your prayers.

 

This entry was posted on July 9, 2011. 1 Comment

Now That Explains A Lot!

I paid a visit to the oncologist this week. I have been extremely fatigued and have continued having pain on my right rib cage side. The fatigue is what cancer survivors term ‘chemo fatigue’, which is a type of “tired” that I only ever felt while going through chemo a couple of years ago. It comes in waves, but hits hard and makes me feel like I must lay down and SLEEP right away. Just a total lack of energy by 10:30 a.m. and this after a full 9 hours of good sleep at night! The doctor ordered two tests. One, a blood test to check for anemia, and another, a PET scan to check and make sure cancer hasn’t spread anywhere. The blood work came back very evident that I have a B-12 deficiency. He prescribed mega doses of B-12 and told me that if I didn’t feel better in a couple of weeks we would start B-12 shots and see why my body isn’t absorbing B-12 through my diet. So this explains a lot!  Now I wait for the PET scan which is scheduled for 2 weeks from now.   I had a clear one of those in November, so I am not expecting them to find anything earth shattering.  Still, it will be nice to get another all clear from cancer!
I also had a pelvic/uterine ultrasound this week and am still waiting for those results. Something lit up on my MRI in February that was non-descript. The gyn. wanted me to wait a couple menstrual cycles before looking again via U.S. When I had the exam I told the tech about it and she said, “No ‘it’s’ still there. I see it”. Of course, she can’t tell me what it might be or what she thinks, so the radiologist is looking at the views and I hope to hear this week. I will admit I’m a bit curious. It is in the myometrium, the inner walls of the uterine muscle, not the lining. Any thoughts from anyone here who may have had this? I’ll just say symptoms in this “female” regard are “annoying”…no pain though. (The only reason we found this was in the hunt for what may be causing the pain on my right side, of which this isn’t even in the same vicinity!)

This has been a very eventful week in our family. Kelli, our youngest graduated Summa Cum Laude from high school, so now we are officially “Empty Nesters” once she leaves for college in 2 months.  We’ve also had a lot of visits with Tim to doctors and E.R.’s for his
3-week-long  shoulder/neck problems, which MRI finally revealed to be a herniated disc and subsequent pinched nerve and mobility problems with his left arm.  He is due to see a spinal surgeon this week at Bethesda Naval Medical Center in Maryland.  Father’s Day is next weekend, but currently, golf, tennis and kayaking (3 of his favorite activities) are out of the question!  I will keep you posted as to what happens next on Tim’s medical front. Please pray for Tim.

Am I Atypical?

Apparently I am! That’s what the dermatologist called to tell me today. The mole removed from my abdomen last week was determined to be Atypia, in other words, “pre-cancerous”, but the margins were clear.  He wants me to be checked again in 4 months, 8 months, 12 months, then every year. (Thanks to my maternal grandmother and paternal grandfather, both of whom had numerous skin cancer lesions). The mole itself was only the size of a small pearl, but quite dark.  Now I am left with what is sure to be a nasty scar, about the size of a large pea, but seeing as I have no intentions of wearing a bikini anytime soon, it is well hidden! If you really must see it, click here.

I have an appointment with my oncologist next week since the pain on my right rib cage area has not improved in almost a year and I have had continued bouts of tender swelling in my groin on that side for over a year as well.  I have numerous sharp, tender “jabs” under my rib cage and towards my back each and every day. At times it is a take-your-breath-away pain, but it is brief and so I deal with it. I’ve almost become accustom to it, so much so that I have stopped all pain medications because they make me too loopy and I guess I would say that the jabs are tolerable (as much as one can stand being “slugged” in their side every day)! I’ll wait to see what tricks Dr. G may have yet left in his bag.  I’m imagining the standard blood work, another scan, and another, “we can’t find anything” result but it is what cancer survivors do. It is the drill for at least 5 years, and sometimes beyond.  As much as I would like to let it go, and decide once and for all that this is nothing to worry about, the fact is that I do worry and I feel very strongly that it is not normal. Fortunately for me, neither does my doctor, and he is on a mission to find it.

Summer is officially underway and next week at this time we will be graduating our last high schooler and attending college orientation soon. This same daughter plans on auditioning for American Idol in Pittsburgh later this summer as well. She can only take one parent with her. We’ll be fighting over that assignment!