Faith Through the Journey

A Remarkable Day

Seven months ago, if you had told me what this day would be like, I don’t know that I would have believed you. After my diagnosis of cancer, I knew that the surgery required to eradicate the disease would drastically alter my speech, my eating, pretty much everything I do with my mouth. There would most likely also be a neck surgery which would leave me somewhat unable to turn my head and leave a very visible scar right in the front of my neck. Once we embarked on this journey, there was no turning back and no guarantees of what my future would look like. Perhaps the hardest thing I knew that would have to change in my life was that I would no longer be able to sing with the Worship Team at my church. How could I sing when my mouth didn’t work right, when turning my head would be a herculean task?

I remember standing at my hospital room window the Sunday night after my surgery. The nurses had just tried to get me to swallow what seemed like a dozen pills.  I was unable to swallow them, gagging as I tried to get them to go down my very swollen throat. I stood there crying, so frustrated and sad over what my life had become. Talking understandably was so far from what I was capable of, and singing wasn’t even on the radar. Trying to communicate with what I perceived to be a “mess in my mouth” seemed completely unattainable. But God…

In the days, weeks and months that followed, I had to learn how to live with my altered speech. My mouth wasn’t the same, and likely never would be back to its original state. I had to learn to think about every syllable I spoke so that I would be understood by whomever I was speaking to. I was truly blessed by my sweet family, who listened to me stumble over words and didn’t call my attention to what I WASN’T saying correctly.

I knew one of the biggest challenges on this journey would be whether or not I would be able to participate in leading worship again as a vocalist. In my heart, I wanted to sing so badly, but would it work with all the changes that had taken place? I didn’t know if this would work or not, but in recent days I felt the Lord telling me it was time. Was I going to trust Him with this or would I be too worried about whether I sounded “right” to myself? Would I sing to glorify the God Who had seen me through some of the hardest days of my life, or would I hold back, more worried about my ability than praising God?

Today, after a 7-month absence, I joined the Worship Team again. Being able to stand and praise my Heavenly Father as the One who gave me everything I’ve needed these months was such an honor and privilege. I was able to stand, not as a musician, but as a child of God who was offering up a sacrifice of praise to the God Who holds every minute of my life in His hands.

“By Your Spirit I will rise from the ashes of defeat. The resurrected King is resurrecting me.”

“Oh the cross of Jesus Christ is the reason I’m alive. For His blood has set me free, it will never lose its power for me.”

The Most Wonderful Time of the Year…

No, it isn’t Christmas already! Because of my very long history of gastrointestinal disease (excuse my indelicacy!), I’m required to have an annual colonoscopy. Actually, I’m always glad to have only one colonoscopy a year! There have been numerous times I have had to have more than one. Springtime, for me, means it’s time for yet another of these lovely procedures. Since I have a 44-year history of Crohn’s Disease, I’m at higher risk for colon cancer and the formation of polyps, as well as recurrences of Crohn’s, colitis and diverticulitis, so the doctor has to keep a close watch for these things in particular.

This year’s test is one I’ve been curious about for some time. I have been off of all the medications I was taking to keep the Crohn’s in remission since I was diagnosed with cancer in August. I stopped taking them because it’s quite possible that they allowed the formation of cancer cells at several sites in my body. The only risk factor I possessed for the location and type of cancer I had was that I had been taking immunosuppressant medications. Restarting ANY type of immunosuppressant drug can open me up to cancer again. Thus, we are very curious about the condition of my digestive system! If there is any disease activity, we will have to make a decision about treatment. The last time I stopped just one of the medications, I had a flare-up of the disease and had to go back on both medications.

Last Sunday morning in church I had a 43-year flashback to 1975, the year after I had first been diagnosed with Crohn’s Disease. My family doctor in my hometown put me through all of the GI tests again because I came home from my freshman year of college feeling pretty crummy. He believed that the Crohn’s was flaring and, like the year before, sent us back to Mayo Clinic because they had treated me there. If I needed surgery, as he believed I might, he wanted the experts to do it. The first thing they gave us was a schedule to REPEAT all of the horrible GI tests I had just been through!! Were they nuts?? As a 19-year-old girl, I was pretty compliant and wanted to please people, but I told my parents that there was NO WAY I was going through that again!! Then I looked at the passage of Scripture we had just studied in Luke 5 the week before in our Sunday school class. Jesus told Peter and the other fishermen to put their nets out in the morning, even though they had fished all night and caught nothing. The result, after they obeyed, was a catch of fish so large that their nets broke. It was as though the Lord was asking me, “Are you going to be obedient and trust Me for the strength to go through the tests, as well as the outcome?” With a very reluctant yes, I did go through the tests and discovered that there had actually been healing in my digestive system and that I would NOT have to have surgery then. I also formed a relationship with a doctor who gave me a strategy to try to live with Crohn’s in such a way that it would not rule my life. Last Sunday I went back to that place where I was obedient and trusted God for the outcome of medical tests, and I don’t believe it’s a coincidence that I find myself at that place yet again.

If there’s one thing I’ve been reminded of repeatedly–blessedly!–in the past year, it’s that I don’t have to be afraid of whatever the outcome of medical tests may be. The words to yet another song (what else?) state truthfully about my Heavenly Father: “You split the sea so I could walk right through it, You drowned my fears in perfect love. You rescued me so I can stand and say, I AM A CHILD OF GOD!!” So, whatever happens this week, we’re good, because God is in control of the test AND the outcome!

Marking Time

This week it will have been six months since my first cancer surgery, the partial glossectomy–or, in truth, the day my tongue was carved apart to remove a cancerous tumor. When I saw the surgeon last month, he said the healing has been excellent and he’s very pleased with my progress. That is the medical, clinical side of my recovery. No complications, no infections, nothing unusual or dramatic to report.

Emotionally, I still struggle on a daily basis with my altered speech. When I wake up in the morning, it’s hard to get my mouth and tongue moving the way my brain is telling it to, and I still sound like I have a mouth full of marbles. Talking on the phone can be monumentally frustrating as my “different” speech is not always understood by the person on the other end of the call. Being somewhat of a perfectionist, anything less than speaking the way I did before the surgery is not acceptable to my way of thinking.

Not being an authority on cancer’s aftermath, I can only speak from my experience and that of others close to me. Treatment may continue for years, it may conclude with a last observation or test, or it may end in the “ultimate healing” of death. For every cancer patient, or for surviving family members, the physical and emotional effects can continue for years, and may never end no matter how distant the diagnosis and treatment may be. Moving on happens to some degree, at least for the living, but there are some days that the diagnosis, the treatment, all of it is as fresh as the day it happened. The reality that this disease has forever changed our lives and our families hits at the most unexpected times. I get tired of thinking about it and LIVING with it, and often I wish I could turn back time to the days before this ever happened.

The other night I was listening to Christian radio and once again Casting Crowns was expressing my thoughts perfectly! “Just Be Held” was playing, and one line in particular stood out and hit me between the eyes: “Your world’s not falling apart, it’s falling into place. I’m on the throne, stop holding on and just be held.” The thought that my life was falling into place at the time when I feel most out of control seems to make no sense. But in God’s ultimate plan, whatever that may be, it IS falling right where God intends it to be. If I believe Romans 8:28, that God does work all things together for those who love Him, then I MUST embrace the idea that cancer has been just one piece of my life that is falling into place and that a good God has a reason for it.

So on those days when I feel that I’m not progressing the way I should be, that I will never be who I was before cancer and surgery, I press on in the strength of the Lord. The puzzle pieces of my life are still being assembled and fitted together according to God’s plan, not mine.

Since I Last Wrote…

It’s been awhile since I’ve had time to write, which must mean that I’m feeling well! Rest and relaxation hasn’t been on my schedule for the past two and a half weeks.

We’ve had appointments with my head and neck surgeon as well as my gastroenterologist. My surgeon was pleased with my progress, scheduling me for an ultrasound before I see him again next month. As he was preparing to leave the room, I told him that my GI doctors were recommending that I begin taking another biologic drug to treat the Crohn’s Disease part of my health treatment. He has never been very emotive, his manner being calm and reassuring no matter how serious the diagnosis might be. However, that day both my husband and I saw the look in his eyes when I shared the GI recommendation of another biologic treatment, and it seemed to convey the idea of something like “Are you out of your mind?? Having gone through all you have, quite possibly due to immunosuppressant and biologic drugs, are you actually considering this??” Of course, he didn’t say that, because he can’t say positively that the cancer was caused by them, but it seems to be my only risk factor in having this particular cancer. We are still praying about what to do next with the Crohn’s, and anxiously (?!) await my annual colonoscopy later this month.

That same night, my husband and I were able to attend a wonderful concert by the group whose music has meant so much to us during this cancer journey, Casting Crowns. When they sang “Oh My Soul” we were both in tears as we remembered the early days after my diagnosis when the presence of Jesus was so real and we were carried by the fact that we have never been alone for one second of this journey. “God of All My Days” reminded us again that no matter what our lives hold, God is the same and is truly the God of ALL our days, the good, the bad and the ordinary.

For eleven straight days I worked as an election judge in Texas’ early voting cycle prior to the actual election day of March 6. In Texas, early voting is available for 8-12 days prior to the election date itself. Theoretically, this is to make it more convenient for citizens to vote thereby increasing voter turnout, although I’m not sure it actually does. Judges are required to be present at the polling place every minute it is open, and with 8-12 hour days it becomes quite tiring. My biggest challenge, however, wasn’t just the physical demands of working that many hours. It was in talking with literally thousands of voters during that period. Every insecurity I’ve felt about the way I speak, how my words sound, was magnified. I was speaking to total strangers, working around my strangely-shaped tongue, trying to be understood and not sound like I had marbles in my mouth. When a voter didn’t hear me or understand what I was saying, I felt exposed and vulnerable. If I spoke too fast, I seemed to trip over my words and got frustrated with my “new” mouth for not responding in the way I wanted it to. But as hard as it was, I know it was good for me to have to push myself to do something that was difficult and forced me out of my comfort zone.

A few weeks ago we were helping care for two of our grandsons.  As my husband and I played with them in the park, I was struck by the thought that I am well enough to do that! It could have turned out very differently last fall, because cancer is unpredictable. I know too that there are no guarantees about the path of the disease and my future health. But right now, I am SO grateful to be at this place and able to enjoy surprising my grandsons by going down the slide with them at the playground!