It's been a while

I apologize for the delay in posting. But, it has been a crazy few weeks. I am currently in Spartanburg and have been here for just under a week because last Wednesday DAD CAME HOME!
We are so excited to have him back at the house. It hasn't been without challenges- he is wheelchair/walker dependent (much more emphasis on the walker), and we are all having to learn his limitations. Even though his physical and occupational therapists aimed to have him able to stay on his own, going from a facility with round-the-clock nursing care to NO nursing care is a HUGE change. But, it is nice to figure this out together.
Dad was so excited to catch up on his news (he is a news junkie and his hospital schedule often had him missing his favorite shows), have some more variety in food choice, and was so thrilled to see Donald the Dog. Donald wasn't so sure what to think about Dad's walker or wheelchair, but is slowly getting more comfortable.

Also, we have confirmed that Dad's diagnosis is officially transverse myelitis and NOT neuro myelitis optica. This is great news in that neuro myelitis optica is more similar to MS and typically paralysis will recur, where as transverse myelitis, while it can recur, typically only occurs once.

This is a picture of Dad moving his foot when we were at his eye exam to rule out neuro myelitis optica. I have one of his face, but he was pushing 3 months with no hair cut, so I'll get an updated one! On Saturday Drew, Mom, Dad, and I all went with Dad to get his first clip. First trip since he'd  been home! Think his sylist thought we were a crazy entourage! If he'll let me, I'll do a before/after post later.

Mom has had a rough few weeks. She had a bad cold and has just been extremely tired. Last week she seemed to be doing a bit better---just in time for her next chemotherapy session last Thursday. This morning she had a CT Scan to determine whether or not that was her last session! We are praying that the scan will show the cancer is gone. She'll get her results Thursday. Her doctors have also discussed her participating in a new study where patients take a drug for a period of time after finishing treatment to see if it reduces remission rates (but the drugs will have side effects). Prayers for discernment about whether or not she should participate are appreciated.

A picture from Mom's Christmas Eve, Eve chemo session. Just watching a little Youtube. Her sessions run 5 1/2 - 6 hours (when she first started it was 7 1/2!

In other news, my niece Sophia has the flu! Please also lift her, John, and Bianca up! Sad when a sweet baby has to be sick.

Thank you to everyone for your continued support. I'll try update again soon.

The Tough Stuff

This week has been extremely encouraging. First, Mom's chemo went smoothly and her oncologist stopped by and said he was very encouraged by her progress. Then, I ran over to see my Dad.  He asked that I come by during his physical therapy so I could see his progress and also because I knew his main physical therapist Dori from high school. While I was there Dad, with Dori's assistance,  took SEVERAL STEPS WITH A WALKER!!!! It was all I could do not to cry like a baby right then and there. I kissed his cheek while he was standing up- so nice to use my tip toes to give him a smooch when lately I have been bending over to reach his cheek. :) So excited and praying that both Mom and Dad continue to progress!

We have done our best to stay positive throughout this process but we definitely have not been without our bumps in the road! So, I thought I would be honest about some of the tougher lessons I have learned and continue to learn since Mom and Dad became sick (emphasis on continue to learn ;)).

First, I learned that people will disappoint you. Friends, family, and people in general have different capacities to handle stress, sickness, and also have different things going on in their own lives. When you are already sad and stressed out, anger is an EASY emotion to resort to, whether or not it is warranted or justified (now don't get me wrong, anger is so, so damaging to the holder and the receiver, but I think it is so much easier to be angry than to be empathetic, sad, or frustrated). I am slowly learning that there is no "right" way to handle situations like these---the responsibilities will never be completely balanced, some folks may not have the emotional capacity to deal with the issues surrounding diseases such as cancer and paralysis, and others just may not have the time- and that is OK. It doesn't mean they aren't giving all they can.  My husband always gives me gentle reminders to focus on what I am doing and not on others- and he is spot on. It helps my focus stay where it needs to be- on mom and dad and makes me  realize that it is a GIFT to be able to spend time with them throughout this process.

Mom and dad are still my parents. I think when your parents are ill and somewhat limited in their abilities to take care of themselves (dad, more so than mom here), it is easy (well for me) to go into "control" mode. To make schedules, plans, and worry, worry, worry and want to be with them every hour of every day. Pretty sure it is SUPER frustrating for parents to be parented by their child, and think it is natural for them NOT to want to ask for help or identify needs. Both mom and dad have had to give me gentle  reminders to calm down and let them make decisions for themselves.  In response, I  shared how down right terrified I was of losing them, and that scheduling and planning was my way of trying to "fix" things. The result? Dad has been much more vocal with me and John regarding the days he needs assistance. Mom has agreed to come to Columbia more just to give us peace of mind. Acknowledging that this is UNCOMFORTABLE for all parties, parents and children was a huge step in figuring out this new situation. We are all able to cut each other a little more slack.

Along those same lines, we are learning how to set boundaries. There are just some things that unless absolutely necessary, I just won't do. Before Dad was in a wheel chair, he needed assistance eating, bathing, etc. We quickly determined what he was comfortable letting his kids help with and what tasks he wanted to leave to nurses, etc.

Finally, it is important to ask for help. In a situation like this there isn't a guide book as to how much time you should spend at the hospital, etc.  My goal is to do what I need to do to take care of myself so that when I am with mom and dad I can give 100%.  John has also had to navigate this balance as he has a baby daughter at home, his wife has had some issues with seizures preventing her from driving, and a job that isn't very flexible. In order to keep the emotional reserves filled you have to rely on outside help. We have been overwelmed by folks stopping by the hospital, visiting mom, bringing meals, calling, etc. And, I can say with confidence, that we wouldn't have been able to get through these past few weeks without you.

Thanks for checking in. Hope everyone has a good evening, I hear there's some football game on tonight....I am really just looking forward to the Glee episode following that game!

Do Blondes Have More Fun? And an Update.

Well, unfortunately, I am not sure if I will ever find out if blonds have more fun, but back in November, when Mom picked out wigs, I did convince her to try on this beauty.  Although she can pull off the look,  she decided to go with her traditional brown/black.  Still, most of the time she wears hats and looks cute as a button.

Today Mom met with her oncologist, and he could not feel the tumor during his physical exam and thinks that she may only need 6 sessions of chemotherapy instead of the 8 that were originally scheduled. First, PRAISE GOD that her tumor is shrinking! Second, if she only has 6 sessions, she could feasibly be finished with chemotherapy by the end of this month! Yahooo! Please pray that her tumor continues to shrink and that she will finish treatment soon!

Dad is also doing well.  After further testing, looks like transverse myelitis is Dad's official diagnosis. The tests for the neuro-myelitis optica came back negative. This past weekend we were shocked to see him moving his legs- huge improvement from a month ago. He has also taken 3 small steps using the parallel bars during pysical therapy. While his brain can communicate to his legs to move, he still cannot tell whether or not they are moving-- i.e. he can wiggle his toes, but cannot tell that they are wiggling. He is still a long way off from walking independently or with the assistance of  a walker, but we are excited about these improvements and try to remind Dad of how far he has come.

I will update again soon as mom has chemo Thursday and I will see Dad then too.

The Crushing Guilt

Sorry for the absence in posting. We have been b-u-s-y!

Dad is doing well. He continues to make slow progress and is working hard in therapy.
His spirits have been a bit down lately- think he is going crazy from spending so much time inside and frustrated at how slow the recovery process is. But, we can definitely see improvements, even if they are slow coming.

Mom has also been doing well. Her blood pressure has been more stable and she is feeling well as she gets ready for her next chemotherapy cycle next Thursday.

This past week I attempted to return to work, and actually almost worked a full week this week. It has been so difficult to spend so much time away from mom and dad. I have been experiencing what my friend Sarah calls "the crushing guilt." Wondering if I am doing enough or letting them down. I am sure there will be more of those feelings as we navigate this road. How do you figure out what the correct balance is? I know I will never regret spending a second to help mom and dad. But, that being said, I have a life and job in Columbia that I can't just press "pause" for....ugh!

Thankfully, family and friends have been absolutely incredible-- from dropping off meals, visiting the hospital, calling to check in, to filling up mom's car with gas- we are grateful. Also so grateful for all of the calls, emails, texts, and facebook messages. Even if you haven't heard back from us, please know how much we appreciate your thoughts and prayers and don't take them for granted.

If you have time, I'd also ask you to lift up a few folks who are also struggling with cancer, I am going to list first names only, please pray for God's peace and healing:

Dot
Jason's Dad (will find out name this week-Jason is one of mom's nurses)
Luke
Moses and
Linda

I will update more frequently. Thanks for checking in.

I Could Go Back (But Don't Think I Want To)

So, I am pretty much a little obsessed with Broadway musicals. And, I sing constantly. Trust me, live with me for a few months, and one day you'll find yourself singing about how you need to take the trash out. Drew, Courtney, and Erica are proof positive of this. (Drew, sorry for calling you out). Whenever I see a musical I often YouTube search my favorite performers, which is how I came across the song "I Could Go Back." It's  a song that was cut from a  musical called "The Burnt Part Boys," which is about several teenage boys whose fathers were killed in a coal mining accident. Today, I am sharing the results of my nerdy compulsive behavior, here:

http://www.youtube.com/watch?v=5z4rPKevNak

Several times recently, I find myself humming the tune or running the lyrics through my mind:

Is There Any Chance That I Can Go Back? That I could go back?  And yell before this couch, before this haze. I'd like to think that I could go back. I'd like to blink this decade away. I don't care if the town is talking. I don't care if the money's out. It hurts my mind when I'm recalling, what this love is all about.

 Is there any chance that I can go back? I could go back.  I could smile before this mess, before this maze. I'd like to steal a part of me back. I'd like to feel I have something to say. I don't care if the sky is falling. I don't care if the cradle breaks. Everyday I'm getting older. Everyday means more mistakes. Ask the ghost, ask the television set, ask your heart what hurts the most. How do I stand still, and still move on? How do I go, back to that? How do I feel, beautiful again?

And I don't care if it takes til' morning, Spending time I'll soon forget.  Every year, our friends get older. Every year, it's more regrets. Is there any chance that I can go back? I'd like to go back. I'd like to breathe before this couch, Before this...cage. I'd like to keep the pieces intact, I'd like to sleep, and not fade away. I'd like to sleep, and not fade away."

And, here's the thing, after feeling bad for myself, wishing I could go back in time a few months or even years, and throwing myself a royal pity party  I am not sure I want to go back. First off, let me clarify, if there was a magic wand that would allow us to make mom not have cancer, or that would allow dad to walk, I'd pay every penny I had for it. However, I would not want to go back to who I was--- worrying whether or not such and such liked me, fretting over wedding planning, gaining 5 pounds, clothes, stressing out about work, money, etc. Life is too short. I mean, looking back I annoy myself!

It may sound contrived, but these past few weeks have changed me. For real style.  God has served up a heaping dose of perspective. I am incredibly blessed and incredibly lucky. My prayer is that once things get back to "normal" (or our new normal, whatever that will look like), that I can live life with an attitude of gratefulness and remembering to not take friends and family for granted. Heck, remembering not to take my ability to shower and dress myself for granted!

Now, if down the road you hear me over-analyzing a situation, i.e. "Well what did it MEAN when person X said this...should I be worried about it, what can I do to fix it." Call my hiney out please!!!!!



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Plugging Along

This week Dad moved to in-patient rehabilitation. Monday he had surgery to get a port placed into his chest to allow the doctors to administer the apherisis. Now both mom and dad have ports- and "bump ports" when she leans over to kiss him goodbye. He has had several apherisis treatments, and we can see some improvement. He is now able to use his quads and can lift his legs a little bit. Dad also began phyiscal and occupational therapy this week, and is learning how to sit up- his movement is limited from his upper torso down so his body has to relearn how to balance. I feel like God is going to allow Dad to walk again- it may be a long journey, but we are all optimistic that he will continue to improve. Keep praying!

Mom had her fourth round of chemotherapy Thursday. She handled it well, but is much more tired than she has been.  Friday morning her primary care physician called to let us know that after re-reviewing the x-ray of her ankle, he thought there was a small fracture. So, I stayed in Spartanburg to get her to her folllow-up doctor's appointments. She will get a walking bootie tomorrow. I am so glad I ended up staying because yesterday  mom  was upstairs in her bedroom when we heard a crash. Mom's blood pressure had dropped, causing her to pass out. A few phone calls to her doctor and to the hospital we went.  Mom was dehydrated and after two bags of fluid, her blood pressure got back up to normal. My uncle came up to stay the night with her so I could get back to Columbia to tend to business. Mom will go back today for more fluids and some bloodwork.

Mom has been so strong the past few weeks and handle her treatment so well, it is easy to forget how fragile she is. This weekend, I got that reminder. I also realized that I still have a learning curve in dealing with all of this---I was with mom  Thursday, Friday, and Saturday and didn't notice she wasn't eating or drinking enough. Um...Fail. But, trust me when I say that her fridge will now be well-stocked with gatorade, soft drinks, and juices!

When I got ot Columbia, one of my bestest friends (and former roomate) Courtney, was waiting for me.  I was so excited to see that she brought Herbie-love's very own Anna Nicole Smith- her pit bull  Bella. Bella and Herbie were such unlikely friends, but they really loved each other and seeing Bella made me miss my pup. I have already gotten tons of Bella snuggles and kisses and I cannot wait for Jake to meet her!  (Drew took Jake  to Moncks Corner for the weekend to see his family and get some hunting in --so glad he could get some time to himself. That being said- very ready to see both of my guys!).

                                                              Bella Road-tripping

Courtney and I met several friends for a late dinner (thanks for waiting guys!), and just had a wonderful time. I haven't been out with friends in such a long time and it was SO good to catch up with everyone. I really have no idea where I would be without my friends throughout this process. There really is something to be said for laughing, crying, and just BEING with friends. Exactly what I needed.

This week, my goal is to try to get back into some sort of normal/schedule and routine. Mom and Dad still need a good deal of support, and it is hard to figure out the balance with keeping up my life in Columbia and being there for them. At times it is plain overwhelming.  Prayers in that regard are appreciated!

Thanks for checking in.

I Believe

Mark 9:24 "...I do believe; help me overcome my unbelief!"

Tonight while riding back to Columbia with Drew and his parents after visiting Dad, this verse popped into my head that was mentioned in our Church service last Sunday.  I couldn't get the wording quite right, when Wayne remembered the exact language. It seems especially appropriate for this season of my life.

I DO believe, but still have trouble trusting that God is in control, and that He will carry us through this. Talking about my faith doesn't come easily for me...and writing about it isn't any easier, but God is moving and working in our family right now and I wanted to share.

God doesn't promise us that life will be easy, and he doesn't promise that bad things won't happen in our lives. But He does promise that nothing can separate us from His love.

In sharing about my parents, I have been continuously encouraged by friends from high school, college, law school, and work sharing their own experiences and providing affirmation. We have also been continuously blessed by folks calling, coming by the hospital, sending cards, and reaching out. Reminders that God is with us throughout this journey. We have also felt the prayers for our family. Throughout the past few weeks, we have seen very specific prayers answered again and again. One example: For the first time ever, tonight my dad told me that he believed Jesus was the son of God, and his Savior---a prayer that I, in my unbelief, did not expect to be answered. The enormity of this answered prayer is still slowly sinking in.  I am overcoming my unbelief.

I am under no illusions that the road before us will be easy.  But, take comfort knowing we aren't traveling it alone.

This week Dad will move to a rehabilitation unit and we will continue to discuss various treatment options. Mom also has 2 doctors appointments and her 4th (halfway!) chemotherapy session. Throw in some wintry weather, and things could be quite interesting. I'll update soon, but in the meantime, please pray for mom and dad's continued recovery and for safe travels to and from appointments.