Hair Today, Gone Tomorrow!

Well, it has happened again folks! I inspected my pillow about a week after I finished radiation, and determined that either a German Shepherd had been sharing my bed or my newly sprouted hair was again on its way out. It's back to bald and beautiful for me! Last night Annabelle had a sleepover at Gram's, and after her bath she came into my room where I opened my drawer and pulled out a brush to work on her tangles. After a minute of thought, she asked, "Gram, why do you even have brushes and combs?" I laughed and told her I hold on to them for her sleepovers.

I am slowly getting back to feeling like myself again after completing radiation. The skin on my head is red and irritated, much like a sunburn, and I've suffered some hearing loss which will likely repair itself in the coming weeks. But the most significant side effect is extreme fatigue which set in a few days after I began the treatment and has just started lessening this week, just in time to get up and throw on a wig to see Annabelle and Addison get baptized in church Sunday morning. Baptisms at our church are usually scheduled every few months so that groups can be baptized in a single service. We were very thankful that they were willing to work in an unscheduled baptism for my grandchildren at Shannon's request so that I could be there to see my them enter into the covenant family. When children are baptized at Coral Ridge, the entire congregation pledges to take part in nurturing them and training them up in faith. As I heard my church family take this oath, I was powerfully touched and reassured that the kids will be taken care of after I'm gone. It was a beautiful experience that reminded me of God's unfailing goodness and grace.

And then it was on to waffle mania! Erin hosted an elaborate celebratory brunch at our house complete with pumpkin waffles and apple maple syrup. She did a fantastic job, and we enjoyed having extended family and friends over to rejoice with us!

Steve accompanied Bob and me to meet with Dr. Segota last week since Mackenzie was visiting her boyfriend in North Carolina. But of course, she didn't leave without giving him explicit instructions on taking notes and asking questions according to her method. Because of his background with medicine in the Navy, Steve was great to have with us during yet another appointment filled with new information, because he could simplify the medical talk for me. Here's the latest news. Without a biopsy providing absolute proof of the cancer in my spine, they cannot treat the disease. Dr. Segota met with a team of doctors to discuss my case, and they decided the spinal area under suspicion is so precarious that attempting a biopsy might do more damage than good. Instead, they'd rather focus on treating the overall cancer as opposed to that specific region. My best option now is a clinical study which involves a daily oral treatment to impede the growth of the cancer. Roughly 10% of people in my situation have the specific mutating gene that is necessary for the study medication to work. So far Holy Cross Hospital has tested 8 candidates for the presence of this gene and none of them have had it. So they've sent off my tissue to be tested as well, and if it turns out that I qualify, I'll be quite the celebrity around the hospital! This clinical study has had great success in extending the life of its participants. We'll find out if I fit the bill in about a week, so please be praying that I do! If not, Dr. Segota said we will refocus on managing the systemic cancer, though we did not go into detail about what that would involve. With the amount of radiation I've received recently, she said it's best I take a few weeks off from any treatment anyhow.

After my last day of brain radiation, I brought the mask home that was used to bolt me to the metal bed for the procedure - just in time for Halloween! The grandkids have had a great time putting on the stiff mask and running around the house yelling, "Boo!" Terribly scary!

I have continued to be blessed by big-hearted people who take the time to remind me of their care. An elegant bouquet of lilies and irises was delivered to our door last week with a touching note from one of Mackenzie's best friends, Arianne. And my daughter-in-law Dawn brought me wonderful scrapbook pages she made with pictures of Steve's induction as a Naval Chief to add to my book because she knows how I love to show off his accomplishments. I also received an adorable card from a first grade class at Westminster Academy with a beautiful drawing on the front of what we are guessing is either a flower or a ladybug. Either way, it was cute and encouraging.

We have enjoyed the week we've had with Steve since his return from duty overseas. He came to collect Dawn, Emma, and their dog Barley who were staying with Dawn's parents in South Florida while he was gone. But unfortunately, their visit has to come to an end, and they are leaving before sunrise tomorrow to drive to their new home in Washington, DC where Steve has been restationed as Chief. I can really never find adequate words to say how proud I am of my son. I am saturated with joy every time I get to see him.

I'm getting ready to head over and say my goodbyes to Steve and co. I'll definitely be bringing my camera to take pictures of Ballerina Emma, and later Kitty Cat Annabelle and Minnie Mouse Addison at Shannon and John's house!

The results are in.

I know many of you have been diligently checking in for answers about my myriad of tests last week, and I am thankful for your concern. I needed some time to get used to the news myself before I was ready to pass it on, so thank you also for your patience. In my appointment last Tuesday, Dr. Segota was teary-eyed as she told my family that my condition has become significantly worse. The MRI of my spine showed free-floating cancer cells, meaning there is cancer in my spinal fluid, which was evidence that cancer would also be in my brain. Cancer appears in the spinal fluid through a process called drop down metastasis which is basically just what it sounds like. The cancer which originated in my lungs infected my brain and its surrounding cerebral fluid, which then dropped down into my spinal fluid, causing a formidable spread of malignancy throughout my body. The MRI of my brain confirmed what Dr. Segota already knew by showing 8 cancerous lesions in my brain. While the cancer in my lungs has remained stable, this surge in metastasis means the disease is strengthening and growing beyond the rate at which it can be treated. Surgery is often performed to remove brain cancer in cases of up to 4 or 5 lesions, but since my brain has rapidly developed 8 lesions, the only option is daily radiation of my entire brain. This will kill the areas of cancer growth and sterilize the rest of my brain so that baby cancer cells cannot develop. Dr. Segota said that in the future I will also likely receive chemo directly into my spine as opposed to the usual systemic chemo in order to impede the cancer growth in my spinal fluid. Of course receiving all of this information in a span of a few minutes set my head spinning as a flood of thoughts, questions, and emotions washed over me. Dr. Segota had the unenviable responsibility of having to tell us the bottom line of all this information is that, statistically speaking, it shortens the amount of time I have left with my loved ones on earth. You know that my hope has been to greet Shannon's new baby in January, which Dr. Segota sorrowfully said will be unlikely considering the growth of my cancer. But she added that most people with stage 4 lung cancer are no longer alive at this point. I have beaten the odds already, and God may allow me to do it again. We will have to wait and trust in the wisdom of His sovereignty.

Wednesday I had my first appointment with Dr. Irina Grosman, my oncologist for radiation. She gave me a thorough examination and sympathetically rubbed my arm as she further explained my situation and the treatment I will undergo. She seems as sweet and capable as Dr. Segota, and I feel fortunate that I love both of my doctors.

So Friday I got my introduction to radiation therapy. As you can imagine, in the process of treating my entire brain, it is imperative that sensitive areas like my eyes are not unnecessarily affected. The way this is avoided is by molding a personalized, incredibly tight-fitting mask that is placed over my neck and face as I lay on the metal bed for radiation. The mask is then bolted into the bed so that my head cannot move and they can ensure that I am in exactly the same position every time I receive treatment so that radiation never affects areas of my head and neck that are not meant to be treated. The mask is porous so breathing is easy, but it is certainly strange to hear footsteps around my bed and not be able to turn my head to see who is in the room with me. Thankfully, I only wear the mask for about 5 minutes per day, which is how long it takes to receive my radiation. During the process, I don't feel a thing, although as soon as they turn the great machine on, I can distinguish a sort of burning odor. I actually know what it smells like to fry my brains!

Such a drastic advancement in my disease was certainly not the report I was hoping to hear from Dr. Segota, and as I tried to focus on her words through a tempest of thoughts, and as I saw Mackenzie diligently recording scribblings in her notebook like, "disease significantly worsening," "probable loss of cognitive abilities," and "daily radiation" - I felt like I had been sideswiped. I was run off the road and flipped upside down by a truck I never saw coming. I thought I knew the path I was on. My cancer was stable and I was on a break from chemo until the day we would see some growth in my tumors. Then we would resume chemo. I know chemo. I'm comfortable with chemo. Radiation was never a possibility. I didn't want to meet new nurses and new doctors and face this new adversary of brain cancer. I wanted to cry. And so I did. I cried and I slept and I stayed in my pajamas for five days. And my family let me.

Then Monday morning I awoke renewed. My pastor Dr. Kennedy used to always respond to the conversational, "How are you?" with the same profound answer: "Far better than I deserve." And that's how I felt. Lung cancer, bone cancer, brain cancer - whatever afflicts me - I am incomprehensibly loved by my Lord and Savior Jesus Christ, and I am blessed. I think it's OK to give in to our tears for a time, and I am not afraid to let myself do it, because I know each time I've been sideswiped in life, the Lord comes alongside me and pulls me out of the muck. I realized I had Monday to take Dawn and energetic Emma to lunch. I had Tuesday to make Halloween cookies with Shannon, Annabelle, and Addison. And I had Wednesday to paint with Erin. I have always taken the most pleasure in the day-to-day business of living, and God is still giving me days filled with my little joys.

I also have a lot to be thankful for in the ways God has chosen to answer many of your prayers. My neck pain that has plagued me for months has gone from a 10 to a 1 on a scale of pain. We never found the cause of the pain, but it was the reason Dr. Segota ordered MRIs of my spine which revealed the growth in my cancer. If it wasn't for the neck pain, we would not have known about the cancer in my brain and spinal fluid until after I was suffering the painful effects of this metastasis. When the last of my MRIs was completed, the constant pain in my neck vanished. Amazing the way God works, isn't it?

I am also thankful that I have not yet experienced the severe headaches and backaches that typically accompany cancer in the brain and spine. God has protected me from these symptoms thus far, and I'm asking you to pray that He will continue to do so. From what my nurses tell me, it's pretty incredible that I am practically asymptomatic for the amount of cancer that has filled my body.

So although the news about my cancer is different than what I had hoped to hear, I am consoled by the knowledge that God is always in control and His purposes are always for the good of those who love Him. I am confident in His promises and in the truth that I am still living "far better than I deserve."