Tuesday, November 29, 2011

One month ago...

It's been exactly a month since my last surgery & 21 months since my first surgery. What a long time to still feel a un-normal. :-/ However, i am healthy for the most part. I am also very hopeful that this last surgery combined with physical therapy will resolve the pain issues.

Due to the physical therapy, I am finally able to lay on my stomach! :-D it has been over 2 years since I could do that. Initially I couldn't lay on my stomach because I was pregnant. then I had my first surgery (mastectomy & expander reconstruction). Once I healed a bit from that, I began to have the expanders filled. Those things were WAY too hard to lay on! I had those for almost a full year. Then with the 'real' implants, they were too uncomfortable to lay on too. Now, the tension in the skin of my abdomen & incisions have kept me on my back &/or side. However, the PT has stretched me enough & softened the scar tissue of the incisions enough for me to sleep like God intended me to -- on my belly!

Too bad I still have to wear a bra 24/7. :-/ I have been wearing a bra 24/7 for 2 years as well. Again, initially it was caused by my pregnancy/baby. I had to bind my breasts to reduce milk production. Then the same surgeries require the constant support of a bra. However, these more natural & smaller foobs are infinitely easier to put in a bra.

On a troublesome note, I just found out my donated time is running short already. :-( However, I am very grateful for the donations I received! :-) With the wonderful people that donated, I have been able to keep our household of 4 afloat through this difficult time. God truly does provide if you ask sincerely & turn your cares over to him.

I have at least 2 more weeks of PT 3 times a week. Those 2 weeks (including this one) are also my last 2 weeks of complete time off from work. When I drop down to only 2 sessions a week (for an indeterminate time), I will have to juggle work & the rest of my rehabilitation. At this moment I am unsure how to best do that to give work 100% AND also give my rehabilitation 100%. Hopefully a good solution will be acceptable to all.

The physical therapist seems very pleased with my progress thus far. She is also very optimistic that she can help me resolve the numbness & tingling/burning in my arms & hands. She says the nerves have shortened & need very slow, careful, consistent stretching to reach 'normal' length again. I have at least 20 minutes of 'homework' that i must do twice a day every day to continue my rehab. Thankfully, my collar-bones haven't been nearly as sore as prior to this last surgery. However, she is also working with me to get my chest in better shape. Eventually, she thinks I will be almost as good as new.

She has been doing a combination of some massage techniques as well as stretching exercises. My left side is the worst in almost all aspects. Over the past 21 months, I have almost constantly favored my left side. I've been trying to protect myself from the constant pain & irritation of all that has been done to me. The skin covering my ribs, chest, & abdomen has stiffened & attached itself to the underlying tissues. In some cases the underlying tissue is very close to bone & therefore almost immovable. Either as an effect of that or due to not fully utilizing my left side, my rib cage doesn't "spring" as it should. In other words, when I try to take a deep breath my ribs don't expand -- especially on the left. This has also been complicated by the skin removed from my abdomen tightening all my skin. When I pull down on the skin covering my abdomen, all the skin above it (chest, neck, etc) moves. In a 'normal' person, the skin smoothly glides & doesn't affect such a large area of the body. This skin tension limits movement a great deal. as far as the nerves (& blood vessels) go, they are so shortened that when I raise my arms to shoulder height, the pulse in my wrists disappears for several seconds (definitely NOT supposed to happen). Standing in a doorway, pressing my elbows at about shoulder height into the doors lets me feel the blood rushing out of my hands. As the blood leaves my hands, they get cold & quickly begin burning/tingling & growing numb (again NOT supposed to happen). There are other things she has told me, but these are the biggies for me. I'll continue working with her until I'm better or she gives up on me.

My worst fear (besides the pain remaining) is that I'll push myself too hard too fast as I tend to do. Historically, I have always been in a hurry to get back to my 'normal'. After my knee surgery in high school, I pushed myself so that in 3 months not only was I running again; I was doing 300 meter hurdles at the regional competition. That resulted in 2 more surgeries on the same knee. After my mastectomy & second reconstruction, I rushed back to work, but ended up in excruciating pain & in difficulty with work. This time I'm trying to take it slow, but our finances require that I return to work ASAP. It's a conundrum, but I'm going to try to put it in God's hands.

Hopefully clear communication (guided by the Holy Spirit) will help everyone involved understand the full situation so no one gets fooled by my supposed 'normal' looks & actions. I've been told that I make it look too easy, so people tend to think I'm much better off than in truth. However, it goes against my nature to "wear sack-cloth & ashes" (scriptural reference) just to elicit sympathy. I will hurt myself before I neglect my obligations. However, the best option is to not hurt myself, but have an understanding with everyone involved with my situation. Hopefully, this is not impossible.

Thanks for everything!

Friday, November 25, 2011

2 years ago..

I was bald & 9 months pregnant. After our pre-meal, Andrew & I returned home. Around 1030 that night (the 25th), Andrew & I were rushing to Labor & Delivery because I was terrified that Rachel wasn't moving. They reassured me she was ok, but kept me anyway.

It was a sleepless night for me (Andrew fell asleep on the chair). By about 430 am, I felt the absolute worst contractions ever (MUCH worse than my 'induced' ones with Simon). Around 730 am Andrew's birthday present, Rachel Eleonore, made her arrival. Her big brother Simon came to see her along with my mom & dad, Andrew's mom, & Andrew's dad.

I repeatedly asked the doctors to check her very thoroughly to make sure my worst fears weren't fact. I was repeatedly assured that my bundle of joy was absolutely healthy & perfect. She had a little trouble maintaining body temperature & a touch of jaundice, but everything was well within normal limits. The chemotherapy that had saved my life hadn't affected her at all! As a matter of fact, she had as much or more hair as me!! We wore our matching hats (hand crocheted by me) for photos & even news stories.

Now it's been 2 years... So hard to believe. I'm cancer-free, but still not pain-free. Rachel is still amazing everyone: only now it's based on what she can do, not what she survived. Simon & Andrew are still pleased with their girls!

On their birthday, we are going to celebrate Andrew's 31 years & Rachel's 2 years. We're having a Cowboy & Cowgirl themed birthday lunch. It's been a wild ride, but we've stuck out past the timer. Yee-haw!

Tuesday, November 22, 2011

Rehabilitation begins...

Today I embark on another leg of this journey: physical therapy. I'm just now capable of mostly standing up-right. I still get very sore & stiff by the end of the day, but I'm obviously getting better.

I'm hoping to find some relief from the 'just-hit-my-funny-bone' sensations that plague both my arms. The Dr at MDA recommended a test to check for nerve damage (to see how extensive) as well as desensitization, exercises, and other rehabilitation as necessary. I just pray that it helps.

Saturday, November 19, 2011

Thanksgivings & prayers

I thank God for my family -- especially Andrew & Rachel on their birthday weekend -- & friends. I thank God for my continued recovery & wish for it to continue smoothly. I thank God for the continued support & love I get from my family -- especially Andrew & mom -- & friends -- especially the Sistas -- & even complete strangers throughout the world. I pray that Rachel & my Thanksgiving story will help other women facing a diagnosis like mine.

I pray that all people in the world will open their eyes & hearts to the wonderful gift of life & give thanks for life even when things look desperate. I pray that cancer patients the world over are getting good care & are thankful for the hard-working doctors, nurses & researchers who are trying to help end the tragedy of cancer.

Thursday, November 17, 2011

LifeSiteNews thinks I'm worthy of a story!!

I have been humbled again by the support and encouragement I have received from strangers. LifeSiteNews, a pro-life, pro-family news agency has written a story about my journey. The author interviewed my mom, Andrew & me in addition to reading my prolific blog entries. His summation of my story is very humbling as he believes that my story will help save lives! Thank you Mr. Pete Baklinski!

That is why I write here & tell everyone who will listen what has happened to me; not because I want praise, fame, or sympathy, but because I truly want others to know that scary diagnoses while pregnant DO NOT have to end as a choice between mother or child. Since God is the Author of Life and He only gives us what we can handle, I know that living my life through this journey and glorifying God while speaking out for life is what He called me to do. I know that even one life saved through my story means that my suffering was not in vain!

Here's a link to the story (I hope, I'm composing this on my phone):


Tuesday, November 15, 2011

Thank you KY employees

I need to give a shout out to my fellow KY employees. They have really carried me through this long struggle with kind emails, prayers, thoughts, & even time. Their compassion & generous nature have made my struggle a little less harrowing. Their support means more to me than I can say. So the next time you complain about state workers, know that in this great state, the workers care for one another & do their jobs with pride!

Monday, November 14, 2011


Through Faith I know that God cares for me. I know He's counted the hairs on my head. I know He's offered to shoulder my burdens. However, I can't help feeling that I'm so deep in this whole that I cannot be saved. I need to let go & let God, but that is incredibly difficult.

FYI: This is not with regards to my health, just the worldly consequences of my long struggle... In other words $ -- the root of all evils & the necessity for today's life.


Gas money for trip to Houston: $400, Hotel for 13 nights: $1064, Hospital fees for surgery: $45,000, Hope that my painful journey is over: PRICELESS!

As you see above, I've gotten my first bill from the hospital for my surgery. Although I know it took tremendous skill & lots of time to cut me to bits & then stitch me back together, that amount seems obscene. That amount doesn't count the surgeons, anesthesiologist, and other doctors that saw me. Wow!!!

Tuesday, November 8, 2011

Home Sweet KY!!!

Today I was released from TX!!! Yippee!!

I also met with a physical rehabilitation (Supportive Care) doctor. After performing a difficult (due to my abdominal restrictions) exam, the doctor spoke to me about my pain issues. He indicated that there may be some nerve damage &/or some muscular deficits from the mastectomy. Time will tell whether the surgery and physical therapy will be successful at eliminating this chronic pain. Hopefully by the end of my recovery period I will know the full extent if this latest adventure's success (or failure). My surgeon told me to think only of the positives. He commented that I was healing "remarkably well" as my stitches and the wires on my arteries were removed.

We have just returned to KY (at 5 am after driving all night). In 6-8 weeks I will have another follow-up appointment with the surgeon and physical rehabilitation doctor in TX. In this 6-8 weeks I plan to rest and rehabilitate. I will be seeking out physical therapy & some more diagnostic tests locally. I intend to rest first to recover from this traumatic surgery. Then I plan to throw myself into rehabilitation with my customary gusto.

I have received some kind emails from various individuals and groups, including some fellow KSP employees. I am grateful and humbled by any show of support. This support means more to me than I can say. Please keep it coming because this journey is still not over. Without support from people like you, I would not be able to do as well as I do. Thank you!

Sunday, November 6, 2011


I'm slowly recovering. Today I ventured to Mass. We chose the MD Anderson chapel. I was unable to kneel due to the tightness of my entire front, but otherwise all was as it should be. I noticed that I was quite limited with my singing as well. Again I think that's due to the tightness of my front.

I'm trying to be kind of circumspect about the descriptions of my surgery and incisions. However, without trying to be graphic, I'm going to describe one of the incisions I have. My most limiting incision is on my abdomen. The line starts on my right hip. Not the front, though, as I expected, but instead on the back. I have a couple of blue stitches there. The line continues all the way down into my bikini line and around to the back of my left hip. At first description that doesn't sound too bad. I mean a straight incision isn't that big of a deal. However, this incision is actually only a small portion of my trouble. Prior to surgery the surgeon made a very large football-shaped mark on me. This was the harvest area. Basically, the surgeon cut this large football-shape out -- skin and underlying fat. The football-shaped skin that was removed is probably in a biohazard bucket somewhere. I didn't end up needing the skin the be transplanted with the fat. He then folded me in half and stitched the edges back together. The loss of skin is why he had to fold me in half -- I no longer have enough to easily reach across the hole he created. Thankfully, human skin -- especially abdominal skin on a woman -- is quite resilient & stretchy. However, in most instances, skin only needs to stretch a small amount at a time. However, since the crater he created was about 5" at it's widest, my skin is stretching quite far quite fast. To reduce the strain and pain of this stretching, I must walk, stand, sit, & even lay curved into a slight C-shape. Both the stretching & curving cause significant pain, however, as time goes on, my abdomen will eventually look, feel, & behave as it did before.

The drawing below is a representation of my abdomen. The pink dashed lines represent the drawing the surgeon did prior to surgery. The red line is the current incision I have on my abdomen. Incidentally, the belly-button in the drawing & in real life stayed in place, but was cut around and threaded through the stretched skin.

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!