Monday, July 2, 2018

Fifty Five and Staying Alive!

I made it! I am 55 and staying alive! As Facebook shares memories with me, it is crazy to think that five years ago I spent my 50th birthday going to chemo appointments and preparing for the surgery that would successfully remove three tumors—one from my colon and two from my liver. It was a hypersensitive time for me—I was reeling with so many emotions, but the strongest was the intense will to live so I could watch my boys continue to grow into the amazing men they are today. I remember first praying that God would allow me to see them graduate. After the first surgery, I upped the ante and asked Him to please let me see them get married. Most of you who have followed my blog from the beginning (and I thank you for your faithfulness, your support, and your prayers) know that my journey is far from over. The cancer has come back twice (both in my lung)—the most recent tumor found at this time last year. So this post is an update on my health, a peek into my faith and attitude during this difficult time, and a reflection on what it is like to live while chasing cancer.

I know I have been silent on my blog lately. The intent was to scale back on blog posts so I could focus on turning my blog into a book. Unfortunately, I have been horribly undisciplined in writing my book, and a lot of it is because I am still inundated with health appointments, scans, insurance issues and all the bureaucracy involved in chasing cancer. The good news is that I FINALLY have a nurse advocate and social worker interceding on my behalf through my insurance company. This only took FIVE years! But they check in with me every week, help me with resources, and do some of the dirty work so I don’t have to think about it. (for any of you who have had to deal with health insurance, you know that it is truly a part time job and it only produces more stress and anxiety for an already sick patient!!!)

On the health front—it has been extremely difficult lately. Most of the complications began back in October of 2016 when I had surgery for an abdominal hernia due to the zipper scar from the first surgery in 2013. I have written about this in previous blogs, but for purposes of catching you all up, here is the short (well, not so short) version:

*After the hernia surgery, I had numerous issues with back and stomach pain and numerous return visits to the doctors. It took five months before the doctors finally got it and realized that the surgery was not done properly and that they needed to repair it.
*I had the second hernia repair last June and that led to the “summer from hell” in which I had multiple complications with drains and infections which led to me being in the hospital for four days (days in which I was supposed to be moving Noah into his second year of college).
*Concurrently, the doctors found that I had another tumor in my lung and I was scheduled for surgery to remove that tumor. Three weeks after I left the hospital, I was admitted again where the lung surgeon removed the lower lobe of my right lung. They got the tumor and found another small one at the same time.
*Thinking I was cancer free again and ready to move on, I found out that my cancer blood markers kept rising and they have continued to rise each month by about 1-2 points. This has led to scans (with a hefty co-pay for each one) every other month to find where the cancer might be. Each scan has come back with NO TUMOR found, hence the term I have coined—“chasing cancer.”
*Concurrently the doctors diagnosed me with Interstitial Cystitis (IC)—a bladder condition that is extremely painful, but treatable (not curable).
*I was starting to feel a bit better, though my anxiety would rear its ugly head every time I felt pain or headaches that lasted more than one day. And then in May I began getting the strangest symptoms of nausea and weakness and throwing up and tightness and bloating in my abdomen. So I went to the doctor, got a full physical, blood work, and scans of my pelvis and abdomen. (NO, I wasn’t pregnant—I am a senior citizen people!) The results came back that I had swelling and inflammation in my ureter (which goes from kidney to bladder) and elevated creatinine levels (which help with kidney function), but no infection detected.
*Which leads us to the present. I am still experiencing nausea and chronic pain on the daily. I have appointments with a urologist and a kidney specialist, but they are in late July. And I have NO answers since the scan did not show cancer yet again.

To sum it up, I am a HOT MESS. And…this is extremely difficult for someone like me who HAS NO TIME FOR THIS BUSINESS! I have a life to live to the fullest.

For a TYPE A, control freak, INFJ (on the Meyers Briggs scale), Highly Sensitive Person (HSP)—all this wreaks extreme havoc on the heart, soul, body, and mind. And it leads me to the end of myself every single day…which leads me to my knees which leads me to my Savior which leads me to surrender. Every hour, every day. 

I can honestly say that I have not felt 100% well for nearly two years. Most of my days I push through at about 65% and there are some days that I push through at about 30%. It is wearing, taxing, and exhausting. I have a short fuse, little patience, and many little fits of rage. This last month during all this pain I had one full blown panic attack and one mini panic attack—which I have never had before.  (Unfortunately the beneficiaries of these lovely qualities are my husband and boys). As I have said before, my husband qualifies for sainthood. And as I have also said before many times in my blog, I am just trying to keep it real here. I want you all who read this to know that even though I have my faith and even though I know Jesus is with me, this is so hard to go through. I am weary. I am burdened. I long to feel vibrant and full of energy and able to every day things without having to push myself.

Two weeks ago I went to North Carolina to pick up my son Noah from the Young Life camp where he had been working for three weeks and to tour five NC colleges for my younger son Micah. I was still weak with nausea and headaches and add to that the humidity and the elevation (we were up in the Blue Ridge Mountains)—and while I had a few decent days, I also had about three very miserable days where I could barely make it through. And in those extremely hard moments, Noah would come in and pray over me. I was getting really pissed off that I was in so much pain and I was determined that pain would not get the best of me, so the boys and I headed off to a gorgeous hike to Linville Falls in the mountains. It was an easy two mile round trip hike and I figured I could do it. As we walked I was feeling winded and my stomach was tightening up and I had to stop at least five times because I thought I was going to puke. The boys were so patient with me and kept saying we should turn around and the stubborn me refused to turn around. It was only a two mile hike dammit! I saw all these cute older couples with their walking sticks and I said, “I want to do that when I am eighty years old! And I can’t even make it now!” And then I started crying and the boys patted my back and held my hand and told me I would be doing that when I was eighty! We made it up to the falls and back and it was absolutely gorgeous and I came back and rested and by the evening I was feeling well enough to go out to dinner. We went to an adorable place in the college mountain town of Boone that the locals had recommended and the boys and I laughed and talked about our trip and they teased me for being such a dork of a mom. When we arrived back in San Diego and Greg picked us up at the airport and asked about the trip, the first thing Micah said was, “Well mom cried about 35 times on the trip!” And to my defense Noah chimed in and said, “Well that is true, but she cried tears of joy a lot, and tears of stress, and tears of pain.” And all I could think of was, “So this is what my boys will remember of me…a wacked out, stressed out, crazy woman!”

 I am not the only one who has endured pain through this cancer journey. My boys have had to deal with this too, in their own way. My biggest concern is that I have not been there for them, and that is why I push through despite the pain, and try to live as fully as I can and experience all I can in the time that I have with my boys, my husband, my friends and my family. Even though my boys tease me for being a dork, and comfort me in my pain, and hug me during my crying outbursts, and steer clear of me when I begin to hyperventilate over piles of laundry, piles of dog hair, piles of unopened mail, I know that our family is bound together in the love and grace of Christ. And when I fear that the only memories they will have are of me being one wacked out crazy mom, I get these words from Noah in my birthday card:

Mom, thank you for continuing to show us what it means to live with so much joy and perseverance through everything that comes your way. The way you live your life is a light to so many people including our family. I love you and support you through it all. You are best—you senior citizen. Now go get that movie ticket discount. Love, Noah

So this is what it feels like to be “55 and still alive”…I am in pain, I fear the unknown, I have anxious thoughts and sleepless nights and I am chasing cancer STILL. But. But. But. I am here. I am grateful. I have a family who knows me at my darkest and still loves me. And I have a Savior who has chosen to keep me alive and who covers me with grace. Grace upon grace. Every hour. Every day.  


Kathy Bevill said...

What a beautifully honest account of your journey thus far. I was just smiling, laughing, and crying with you. I don’t see you much, except as I drive by and you’re walking the dogs. I want you to know I pray for you daily. I love you with all my heart. Yes, you are an inspiration to me and when I complain about trivial things I really need to step back and evaluate what I’m doing. Thanks for always sharing your journey and please know that it’s always a learning experience for many of us who read it! ❤️

Irene said...

You are chasing Life, and running like h-e-doublehockeysticks beating cancer. Your grit and determination are what your boys, now men, will always remember. Even when you're walking a two mile hike at 80 w a stick at true senior citizen status.

Unknown said...

You are amazing Kirsten. Hang in there and don't forget to ask for help any time. I can do laundry and basically any house cleaning!😜 Love you!

Steve R said...

Greetings from Clayton Mrs. Dork! 55 years...they went by very quickly for me as I’m sure they have for you. Life is good and we have so much to be thankful for. Thank you for your posts and blog Kirsten - they are so real and very inspiring to me. It’s been a reflective week for me as I get ready to head down to the funeral of one of my fraternity brothers at UCLA - he was one of my very favorite people in the house. 2nd one this year. Our time here on earth is too short! I’ll keep you in my prayers!

Judy W. said...

I hope that there are times when you can, even for a little while, be proud of the strong woman you are. You set your bar so high and you are a shining example of what faith, love, hope and prayer can accomplish. Hang in there...lots of love!

Martha Hisler said...

Hi Kirsten,
I just happened to stumble onto your blog and am so sorry to hear you are battling cancer. My husband is a two time cancer SURVIVOR! He has dealt with so many of the thing you mention in your blog. It is so nice to see you staying joyful through it. Now, here is the crazy part: I had you for 8th grade English at Ray Kroc Middle School during the 86-87 school year! You are actually one of the big reasons I am a Middle School English teacher. Anyway, I signed up for your blog updates and will be keeping you in my prayers as you continue this journey.