Trying to be Normal

IMG_5347Well, we’ve been home from Houston for about a week now. So far, so good. It’s funny how the routine and realities of life settle-in so easily. We are extremely grateful for the clear scans and we continue our prayers as we anticipate the repeat of our doctors’ appointments and scans at the end of January. Every clear check-up points me in the right direction of one day being declared, “cured”.  As one of my doctors summed it up, “One year is excellent. Three years is cured.”

As much as we want to be jubilant and energized from our wonderful news, Jonathan and I find ourselves in a place of exhaustion. For months we have been living on adrenaline – going from test to test, one appointment after another and one complicated treatment after another. Now we are coming to the surface. The numbness that enabled us to pursue a diagnosis and treatment with full gusto has now worn off into a state of shock. I can’t put it into words. I imagine it is completely normal and I think it is a matter of time to adjust.

During our appointments last week, we addressed eye, skin & hair side effects with the doctors. Since radiation is ever-evolving long after the actual treatment has ended, many things will take time to see how they resolve. Most of it will be treatable. Some of my fatigue I mentioned above can be attributed to anemia – my blood counts will go up and down for some time as my body recovers from the stem cell transplant.

IMG_5348God has carried us through the scariest days of this trial, and we will continue to lean on Him as we anticipate scans every few months and experience the aftermath of my treatments. Thank you for your prayers. I can’t imagine what this would be like without our faith and the prayers of my family, friends and others who have been willing to pray. God has not taken away all of my pain or fear or difficulties, but He has blessed me with an awareness of His love, comfort, peace and ultimate use of this hardship for good.

On a lighter note, here is a link to some amazing photography/filmography of the majestic nature in Wyoming – amazing this is only one small geographic area. I can’t watch it enough – it is a wonderful display of God’s power and beauty. I hope you enjoy it too.

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Life in Full Swing

Well, it has been a few weeks since I’ve updated my blog. I guess I haven’t really had much to say – which I’m looking at as a good thing! I have felt pretty good. I still tire easily, get frustrated with my cosmetic challenges and have the occasional ache and nausea, but that severely pales in comparison to my great joy in not feeling any new knots around my eye/forehead area.

In the 6 or so weeks that we’ve been back into the swing of things, we have purposely tried to seize our days with fun activities. Our family has camped, canoed, hiked, ridden horses and had some one-on-time with some friends and extended family. We have been blessed with continued meals being brought to our home, and we even had a crew of 9 ladies from our church spend last Wednesday morning with me here at the house. 3 of the ladies planted fall flowers outside and the other 6 brought cleaning supplies and went to work throughout our entire house! Having 9 ambitious women working on our house for 2-3 hours resulted in our home being the cleanest it’s ever been, and allowed me the opportunity to bask in a tidy home while not having to lift a finger. I could get used to that! Thank you, ladies!!!

Jonathan and I will leave next Monday for Houston. We will have 3-4 days of appointments including: 2 CT scans, a PET scan, and appointments with the ophthalmologist, dermatologist, stem cell doctor and radiation oncologist. I have a peace within that all will be well. Please pray for clear scans, wisdom for each one of my doctors, and safe travels.

Here are some pictures of our activities – and maybe a couple of random ones . . .

Duck River
Duck River
Canoeing
Canoeing
A little side-tracked from the shopping list.
A little side-tracked from the shopping list.
Campfire
Campfire
Little Davey Crockett
Little Davy Crockett
Hiking
Hiking
Horseback Riding
Horseback Riding
Talking Tortilla
Talking Tortilla

Trust

FullSizeRenderThis will be just a brief update. It has been a good, busy week, and my continued struggle is to trust God and release the worry that sneaks up on me now and then. It is hard to forget about everything when it greets you in the mirror every time you go to the bathroom, and each time you wash your face you question if you are feeling scar tissue, normal swelling/irritation from the radiation or something else . . . It is an ongoing battle.

I’m somewhat of a hermit at the moment. I’m just not very comfortable getting out much – I’m self-conscious of my appearance, concerned about picking up germs and I get easily exhausted from a lot of conversation. Because of this, I haven’t been to our church yet.

In the meantime, I’ve been encouraged and kept more focused by watching either Andy Stanley or Charles Stanley’s messages (father and son with Atlanta area churches, and 2 totally different styles of teaching). Funny how the timing has been perfect with messages on: decision making and how to walk through crises in your life.

Here’s a link to an Andy Stanley series called Starting Point. They are short segments that are great for either affirming your faith as a believer, or if you went to church at one point but lost your faith, or if you are just searching. I highly recommend it.

Also, as I said above, I have to constantly stay focused on trusting God through this. This song has been playing in my head a lot, and helps me redirect my thoughts. Thank you for your continued prayers for complete healing and letting the worry go.

p.s. A BIG thank you to all of the men who helped Jonathan with yard work and outdoor projects yesterday, AND to all of the ladies who have been supporting us with delicious dinners!

Decision Made

It has been wonderful to be back home. We hit the ground running with making school lunches, coordinating 3 different school schedules (preschool, elementary & middle), homework, housework, etc. My parents stayed with us the first several days to help us reorient ourselves with our busy family schedule. Funny how you lose speed and the ability to multi-task with 4 months away (I suppose recovering from the treatments contributes a little bit to that too.) Anyway, we’ve chosen to let some things slide and instead have chosen to enjoy more family time.

During this time, we have also come to a decision on whether or not to pursue an allogeneic (donor) stem cell transplant. Thank you for your prayers. As you know, this is an extremely challenging decision – one that the doctors can not make for me because there simply isn’t the data to show a clear direction. We have given this thorough consideration – reviewing what was told to us at MDA, meeting with 2 Vanderbilt oncologists to see how they’d logically consider the options, lots of prayer and seeking spiritual advice from our church minister and an elder (the same ones who flew out to Houston and prayed with us at our apartment).

As aggressive and proactive as we’ve tried to be with each step of medical care and treatment, we have a great peace that for now, we should not move forward with the allogeneic (donor) stem cell transplant. Through scripture, prayer, speaking with other believers, and the faith-related experiences we had in Texas, I feel confident that this is the right choice. It is a peace that surpasses understanding.

I called my stem cell doctor’s office on Thursday and left a message for him – letting him know that I do not want to pursue an allogeneic transplant at this time. It is a big weight lifted to have this decision made.

As far as how I’m feeling, I’m surprised at how sometimes I physically feel pretty much normal. However, in no time I can completely crash. I nap almost daily, and getting to bed early is a must to keep up with the pace of the family.  In addition to all of the previous support, we also have dinners from friends being delivered every-other-day starting today and Jonathan has a crew of church friends coming next Saturday to help with some outside projects. Once again, we are extremely grateful.

Our church also held a blood drive at the beginning of the month. They collected 30-35 units of blood! And even had to turn some donors away because of a larger response than expected. Thank you to those who donated (& to those who tried) for replenishing all that I used during my treatments, and for the additional units that will increase the supply to help others.

Again, thank you for your prayers!  Please continue to pray specifically that I’m cured, and for an overall healing for our family – it has been physically, mentally, emotionally, spiritually exhausting and a complete upheaval from normalcy – YET, we don’t want to be “normal” again.  Also, I will return to MDA the week of 10/20 for scans and to meet with the stem cell MD, ophthalmologist, dermatologist and radiation oncologist – a busy week. Please pray that we will not be anxious, that the doctors have wisdom and that I’m on the road to good health.Screen Shot 2014-09-14 at 12.49.37 PM

 

Beach Photos

We just got back home to Tennessee last night. aaaaaahhhhhh. There’s nothing like your own bed and rainfall to lull you to sleep. We are so so happy to be back together in our home. Here are a few pictures of our reunion in Florida.

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Family Reunion

photoWe are finally reunited with our children! We left Houston on Wednesday, and by Wednesday evening we were hugging our babies on the beach in Florida. We decided that our family needed some quiet, healing time to just be, so we rented a condo on the beach for a week. Our reunion was full of hugs and kisses and we are enjoying each moment together.  It has been a long 4 months.

Prior to leaving MD Anderson, I met with my stem cell doctor. I’m recovering well from the transplant. We have a plan that includes: an array  of prescription medications that will prevent infections and organ problems, at 5 months I’ll re-do all of my childhood vaccines, and follow-up screenings scheduled for every three months.

photo 2I had sort of an impromptu CT scan on Tuesday, and I’m thrilled and relieved to report that it was normal / all clear! Our prayer now is that each subsequent scan from here on out is clear.

My stem cell doctor would like me to decide in the next 10 days whether or not I’d like to proceed with a donor stem cell transplant. We would need to do the transplant in 1-2 months. This is a huge decision. This is the same debate that the medical professionals had a couple of months ago and couldn’t come to a clear consensus because the data doesn’t support a clear direction.

Please pray for wisdom as we make this decision. There are too many details to share on why this could be beneficial and all the risks involved, but we believe that the Holy Spirit will give us a sense of peace as to the best course of action. Please pray with us for this clarity.

Prayer Requests: Praise for the clear scan! Clear direction on whether or not to pursue a donor stem cell transplant. Complete healing. A wonderful, quiet family time and smooth transition back to our “new normal” life.

Gratitude

Well, things are wrapping up here. This last week I had several appointments. Many were lab draws and then a meeting with the nurse practitioner to interpret the results. My blood counts are looking strong, and thankfully we didn’t need to replete any electrolytes, blood products, etc. I’m also very happy to report that the loathed IV in my chest was finally removed! That was one of my happiest experiences while being here.  I’ll see my stem cell transplant doctor on Monday, and if my labs look great and I’m eating/drinking okay, then I’ll be discharged from outpatient care for 2 months.

My family and I have been incredibly cared for and supported through this journey and I’m so thankful. I can’t mention everything that has been done over the last several months, but I can tell you some of the blessings of the last week.  While still in the hospital, a friend from our church came for a visit and prayed with us. After returning to our apartment, our senior minister and an elder from our church came to visit with us and pray for me. A woman from the church we are renting our apartment from, came to visit and gave me two beautiful rings (of my choosing – she’s downsizing on her jewelry, and using it to brighten others’ day). My friend drove my child to and from school every day (which she’s done since school started). Our next door neighbor helped my dad install a new microwave at our house.  Jonathan’s cousin’s wife came to the apartment and helped me with my makeup. I mentioned a while back that the radiation took away the majority of both eyebrows and all eyelashes on my right eye. She brought me makeup and taught me how to draw eyebrows on and how to apply fake eyelashes. She is talented and she does it effortlessly. It’s going to take me lots of practice. If you see me, don’t laugh if my eyebrows look “angry” or my fake eyelashes are halfway falling off. I’m really quite clumsy with it all right now. And last but not least, our family tirelessly continues to team-up on childcare without a hiccup.  Just so many people giving their time and support to our family. . .

I feel very blessed.  I think for my circumstances, I have the best scenario possible, and it is still very hard. I feel for those with more dire prognoses and less support. There is a great need out there. Thank you for supporting us in an amazing way. I ask for your continued prayers. It is a moment to moment battle. Throughout the day I’m learning  to repeat a short prayer before I become completely overwhelmed. “Jesus, I trust you. I surrender to you. Fight this battle for me.” I have definitely learned that I can’t do this on my own.

 

Being Paroled on Thursday

Tomorrow will be 3 weeks & 2 days since being admitted into MDA, and it looks like I’ll

Jonathan brightened my hospital room with an illustration he made from a photograph of the kids and me.
Jonathan brightened my hospital room with an illustration he made of the kids and me. (click to enlarge)

be going “home”! (Home being our local apartment.) It has been a ride with many twists and turns, many I can’t even remember clearly, but I’ve made it through to the other side. Thank you so much for your prayers, cards, texts, emails, comments.  Each one gives me a little more oomph to put one foot in front of the other.

With the stem cell transplant, comes a “lethal” dose of chemo.  The drugs were so powerful and harsh that my skin was affected with a sunburn effect & blistering, my GI tract was so damaged I couldn’t talk or swallow – and hence, Jonathan says he saw me the maddest he’s ever seen me (that’s in almost 20 years).  I was beyond fed up with my circumstance. We  called in reinforcements, a.k.a. Mom, and thankfully each day the severe reactions lessened.  We’ve seen my stem cells engraft, and now I’m on my way to outpatient monitoring.

As happy as I am to leave the hospital, there is a bit of trepidation. I imagine most cancer survivors understand the vulnerability you feel as you complete your treatment. After actively fighting the monster for months, you are suddenly “done”. It’s a little like a dead silence and looking over your shoulder for what’s next. It is an area I will need prayers on. I need to keep my eyes fixed on Him and let my faith be bigger than the “what ifs” that lurk around. It is easy for me to replay statistics and doctors’ talks of recurrence in my head. BUT then I have to remind myself to WAKE UP and remember all of the evidence of God’s plan, love, & trustworthiness AND all he has already done to restore my health.

Please pray that I keep my eyes fixed on Him, that I am patient as I finish these last weeks in Houston, that there is complete healing for my body, that our family fares well through this trial and that the emotions that accompany this transition will be manageable.