Steady on . . .

“Teach us to number our days aright, that we may gain a heart of wisdom.” Psalm 90:12

You should know me well enough by now to know that before I offer a glimpse into my heart, it’s helpful for me to glimpse into my daughter’s eyes. She provides me with inspiration and makes me smile. Earlier this week, the little fashionista insisted on wearing all pink. It was the only way I could coerce her out of the pink pajamas she was wearing. Yet, after she composed this assemble, I began to wonder if the pajamas weren’t a better option. I decided it was too cold to venture out anyway, so Mommy had to let the outfit “go.”

 
Work it, Lil A! Work it! “You know you like it, Mama!”



Okay . . . I feel better now. After a long, oft-stress-filled week at MDA, I find myself lacking motivation to post anything. I feel as if there is so much decompressing I have to do. There is new information to process, physical & emotional fatigue, and the obvious realities one faces when returning home from a nine day absence – mail, laundry, grocery-shopping, reorganizing, etc . . . everyone has to face those obvious realities after a sabbatical; however, I have found them exceedingly more difficult to face after returns from a “cancer” center. It’s almost been a year, and the coming-and-going routine is still difficult.

Part of this is because I often find myself unsure where I fit anymore. When I‘m at MDA, I look around to find mostly aged, wrinkled faces, and think to myself, “I am not supposed to be here. My husband is not retired. I don’t require a walker. I never smoked. I have an energetic three-year-old. I have a life to live – I am supposed to have so much more to look forward to. I shouldn’t be here.”

But then, I return home and look around to find I don’t fit here anymore either. Being an older mommy with one young child, I never really felt like I did anyway, but I really feel out of place now. I go to a playground and hear moms talking about their everyday concerns – misbehaving children, homeschooling lessons, pregnancies, spring break plans, etc . . . and I realize I have little to offer the conversation. Unless they want to hear about ports, PET scans, and chemo pills (which ironically makes pregnancy a non-option). Even when my mind tries to focus on being “in the moment” with Alexa, I find my thoughts wandering to the real concerns I am facing – is this cancer stable? Will I be here next year to push Alexa in this swing? Will we be able to have more children? Will there be a day I don’t think about this cancer and can just enjoy the every day life I used to take for granted? It’s an incredibly weird and lonely place to be. I can talk about my future insomuch as I know when my next doctor’s appointment or scan will be. Aside from that, the future is the next moment God gives me – that’s all I’m promised. That’s all anyone is promised, but we certainly don’t live that way. Do we?

I am not asking for sympathy here. I am simply explaining how it feels to live in this strange realm of longing-for-everything-to-be-as-normal-as-possible and knowing it just isn’t anymore. A pastor told us early on that our lives would never be the same. I knew he was right, I was just naïve about what that meant. Our entire life has changed – my husband’s, my daughter’s, our parents’, our extended family, etc. . . I view things differently. The things that were such a big deal before, just aren’t. I used to dread the bedtime process with Alexa Hope, and now I treasure it. I could rock her all night. And, I believe my family realizes just how much we need each other. Our times together are precious and necessary. Life is just different . . . and it is emphasized most during and after a visit to MDA.

Ergo – I don’t post much after a visit. However, I did promise you I’d share my thoughts on my last visit and how we would appreciate your prayers in this down time (for which we are very grateful) before heading back for rescans and a follow-up appointment March 28-31.

Overall, the week went incredibly well. Looking back at my schedule, I am always amazed at the daily, moment-by-moment grace God’s extends to me when I’m there. I was able to interact with some really special patients and workers. There were no hiccups in my schedule. Physically, I probably felt the best I have in several months, and the news we received made the trip much more bearable. I am always keenly aware the news could be much worse.

The only downer for me personally was meeting with Dr. Benjamin. I have thought many times this week about how to express my feelings about him on the blog without sounding overly negative. But the bottom line is – I don’t really like him (and it isn’t his fault). Our personalities don’t match, and he’s the guy who shoulders the responsibility of delivering the big news. I felt rather discouraged leaving my appointment with him when I should have been praising God for such a good report. I truly believe if he had to tell someone they won the lottery, they might walk away feeling overwhelmed instead of ecstatic because he would explain the tax consequences and emotional effects the “big win” would have on their life (and perhaps that should be the case with lottery winners). Because Chris does not have the same opinion I do, I always listen to his take on the appointment because he processes it so differently. He reminds me Dr. B is an academic. He is a brilliant scholar who knows a great deal about this disease and we are in excellent hands. We would rather have a brilliant doc than Mr. Personality . . . well sometimes Mr. Personality might not be too bad because I am funny and he doesn’t ever get my jokes (wink, wink). Dr. B. is just very deliberate in what he shares and he isn’t going to say anything that would get him sued. In that, he can often come across a bit discouraging but I don’t think he means it to be that way. It can just be received incorrectly. And let’s be honest, with a rare metastatic sarcoma with no targeted treatment, there isn’t a bunch of “whoopin’ and hollerin’” at these appointments. He wouldn’t be in this field if he didn’t care, and so, I have to trust that.

He said, “I was doing better than he expected.” Hmmmmmm . . . what does that mean? What did he expect? How bad am I supposed to be?

He said, “My lungs looked better.” I want to know what “better” means. Is there cancer on them or things that look like cancer? Do I need another antibiotic? What’s going on?

These sorts of comments bother me, but as my Dad reminded me, “You always want to exceed his expectations. Let’s keep praying you exceed his expectations. And, Dr. B is only looking at you in regards to medicine – not your faith, your fight, your support group, etc . . .” Another friend said, “Perhaps when Dr. B says you are doing better than he expected, that is his way of doing a victory dance.” Perhaps – I’d prefer the victory dance. It’s just that I read so much into what he says and how he says it, and I probably shouldn’t.

And, of course, my heart sunk to hear of two more spots that lit up on the PET scan. I desperately wanted to hear, “It’s all clean.” However, I am thankful the spots are so insignificant, even Dr. B didn’t seemed overly concerned with them at this appointment. I just know that the majority of body parts that have lit up on a PET have been cancer – and we are praying against that – totally and completely against the formation of any cancer.

I was sharing with my family that one of the most frustrating things for me is the inability to simply savor the good news and rest in that. As soon as we walked out of the appointment, my mind began preparing for the next appointment, wondering what the next scan would reveal, the what ifs, etc . . . It’s like I had held my breath since my last visit to MDA. I let it out in the appointment with Dr. B when he gave me my results, and then I took another deep breath in preparation for my next visit in March. Yuck! I just hate that ugly reality with cancer. I am asking the Lord to help my heart in this regard.

And so – that is where we are. Utterly thankful my body seems clean with the exception of two very small spots (one on my right calf and one on my T6 vertebrae). Both of which we don’t even know are cancer and are praying aren’t. My lungs appear to be clear and the pain I am having is associated with two herniated discs (between T7/T8 and T8/T9). I will continue my full dose of Votrient and my bone-strengthening shot. I have resumed hand therapy and can start low-impact exercise. Minus the ribcage/skin sensitivity, I feel very good. Better than I have in so, so long. My hair continues to grow curly (and white). I praise God for the feeling of overall well-being. I praise Him for the privilege of being better able to fulfill my role of wife, Mama and friend. I praise Him for the blessing of family and friends with whom I can process this madness and gain godly, encouraging perspective. I am so thankful for the reminders I am a fighter, and I am promised abundant life in Him – it’s my choice to believe in and live out the promise.

Steady on . . .

PRAYER REQUESTS

I have listed several as God has laid them on my heart this week. I pray over these throughout the day, obviously because I am living this, and the needs arise moment-by-moment. In no way, feel obligated to pray over them all. It’s my Type A, “Just reminding you, we need you in big & small ways, God,” list.

- For total, complete, God-sized healing from cancer (forever) and a long life to make His glory known through this miracle.

- For complete destruction of the small spots on my calf & T6 vertebrae – no spread, no recurrence, no cancer. For a beautifully clean PET scan in March.

- For complete healing of whatever is going on in my lungs (still coughing quite a bit & difficult to take a deep breath). Complete healing of the herniated discs in my mid-back. Dr. B asked me not to go to a neurosurgeon about this until my next appt in March.

- Continued divine protection over my lungs/brain/any major organ. This cancer tends to attack lungs/brain. We see His hand in the fact it hasn’t.

- For the radiated areas of bone to continue healing with no complication, esp the pelvis joint.

- For the Votrient to continue its effectiveness in stabilizing and preventing the spread of cancer cells.

- For God to eradicate any long or short-term side effects from the Votrient (no high blood pressure or liver damage) and continued exposure to radiation.

- For the 2nd part of the clinical study I was enrolled in to provide helpful insight into how to better treat and kill this disease. Dr. B did not have the 2nd part of this study at my last appt. The 1st part of information gathered was not helpful.

- For the ability to carve out time to sweat (hooray) and get back to my hand therapy. From my therapy yesterday, we know my grip strength has increased. That’s exciting!! I am relearning how to juggle and shoot a basketball.

- We are ultimately praying God would heal my body in such a way (through medicine, nutrition, exercise & divine intervention) that my body will be able to recognize cancer cells once again and obliterate them.

- For wisdom in how to plan our days . . . we have decisions to make and they are complicated with this disease. Should we move? What school will Alexa go to? Should we try to plan a vacation?

- Living each day to its fullest and believing God for BIG things. Appreciating where we are and growing in it . . . steady on, my friends, steady on.