This blog has not only kept me in touch with great family members and friends, but it has also introduced me to great new people. One of these new acquaintances left me a kind comment and introduced me to his own blog, as he is also battling glioblastoma. One of the comments he makes in his blog is that while this cancer may take a piece of his mind, it does not take away his peace of mind. I really liked that, and I am trying to apply that same approach.
I am almost finished with my "initial" treatment regimen of chemotherapy and radiation. (They don't call it "first", because we don't know yet whether there will be another.) I will finish my 42-day course of Temodar chemotherapy drugs on Sunday night. I will finish my radiation treatments in the first part of March. They will finish with a field reduction and a "boost" - a concentrated blast in a very specific area. Then I rest until April 5, when I have an MRI scan and a meeting with my neuro-oncologist.
Side effects update:
Nausea - none
Fatigue - a little, but mostly because I have been playing too much and sleeping too little
Hair loss - the mange continues, but still in very hideable locations
Neuromuscular function - hey, I'm still clogging!
Cognitive function - hey, I'm still blogging!
Pain - not really anything. An occasional mild headache, but not painful enough to need any medication, and it usually comes on when I eat something junky and/or am tired.
Etc. - the right side of my head (where my surgical scar is, and where the radiation hits me) feels kind of numb to the touch in some places; sensitive in other places. I am also having some problems with my right ear, because the eardrum is inflamed and irritated. It feels really clogged and I have some hearing loss in that side, but hey - it was good enough to sing yesterday in church. My skin on the right side of my face and head looks really sunburned and dry.
Overall, this is a lot better than I expected it to be after so many weeks of treatment. I feel very blessed in that regard.
Looking back on this experience, I realize that I have traveled through different stops on a journey - each with its own accompanying emotions.
Before my surgery I was apprehensive yet very optomistic, because I knew that I could trust completely in the Lord.
After my surgery and diagnosis I found myself recovering from both physical and emotional trauma, both of which were overwhelming. I had to adjust to this new circumstance of a life-threatening disease with a lousy prognosis. Mortality stared me in the eye, and I was forced to confront something that I never thought would happen to me - especially at this age. My immediate thoughts were for my family, and for the things I wanted to do with my life while I still had my life. I grieved considerably the loss of my hopes and dreams for the future. I continued to know that the Lord deserved my trust, and so at first I resigned myself to the unfolding of this process, believing that while it would be difficult, at least I would be watched over and helped.
Then I decided it was okay to pray for a miracle. To put my righteous desires before the Lord (petition the judge) and plead my compelling case. Let me live to raise my children. I wanted to be a mother for so long, and not just so I could rock a baby in a rocking chair. So I could have those teaching moments. So I could influence and love these children into adulthood, just as I was influenced and loved throughout my life. This was the life's work that I wanted. These children came to me through inspired means. I was to be their mother. Not the mother who bore them, but the mother who would raise them. And so I plead for time and life to raise them. And more time to be with my dear husband, whose companionship has been one of the crowning blessings of my life. I plead every day for his comfort and strength, so that he will be able to bear all that is on his shoulders. He bears it with courage and grace, but I know it can be heavy for him, and I want him to be sustained as he continues to do so much for our family. A miracle of healing is what I want. For my sake, for Jared's sake, and for Jacob's and Emma's sakes. I never want to ask amiss, so I include the "Thy will be done" clause. But I pray for a miracle, and I appreciate the multitudes whose voices have joined with mine. I know that each prayer is being recorded and heard, and each prayer will be part of this process. Something good will happen. Somehow there will be a miracle. Even if this cancer ultimately takes my life, miracles are possible in the lives of my family and in the very lives of those who are praying for me. And maybe - just maybe - these prayers will provide the faith necessary to keep me tethered to this earth long enough to do the work that I desire to do so much.
When I started treatment, I was a little nervous, but I was excited to be doing something about this cancer. I knew that Temodar and Novalis were two of the best available technologies for me. I was encouraged by the minimal side effects. I loved feeling vibrant and alive, instead of feeling half-dead. I was active in the battle against this enemy in my mind. Treatment, prayer, positive thinking - all good weapons being used to the best of our abilities. I was pressing forward with faith and hope and optimism.
And now I am coming to the end of that treatment. I will be in a maintenance mode, where the biggest part of the process will be monitoring for recurrence. Recurrence is the word that strikes fear in the hearts of every cancer patient. Recurrence in the same area as the original tumor might not threaten my life, but it might invade more space and threaten the talents and abilities that were so carefully preserved up until this point. Recurrence in another part of the brain might threaten more critical functions. Location, location, location - just as in real estate, these are the most important things when dealing with a brain tumor. Decisions about treatment of recurrence will depend on the combined considerations of size, location, and clinical effects of the tumor. It is something I hope never happens, but it is often discussed as a "when," not an "if". Glioblastoma multiforme is regarded as a terminal condition, and the goal of treatment is not a cure, but the prolonging of life as much as possible. At least from a medical perspective. From the miracle perspective, nothing is impossible.
Today was my first exercise in preparing for recurrence. As I met with my radiation oncologist to plan the final radiation treatments, including the boost, I learned that another MRI was needed next week. It is primarily to help guide the boost process, because it will highlight areas of interest that need to be targeted. I was hoping that somehow he wouldn't find any. But then I learned today that when he worked with my neurosurgeon to plan my radiation treatment, the neurosurgeon saw something "that concerned him" in the baseline MRI that was ordered by my radiation oncologist. To me it seems like two possibilities: 1) there was not a complete resection of the tumor, although the post-op scans seemed to indicate that there was; or 2) something was already recurring by the time I was getting ready to start radiation. This was news to me today. It made my stomach turn.
I will know more about this next week. I will have an MRI scan. Afterward, I will wait a day or so to know what it looked like. It may look bad, regardless of what really is going on, because radiation swelling, necrosis, and healing can all show up on an MRI, and might be hard to distinguish from tumor recurrence. But we can at least compare with the baseline MRI and see how that area of concern looks. At least that area has been bombarded with radiation, because it was identified while they were making the treatment plan. This information will guide the boost treatment.
Then I will wait until April 5, when I have another scan. Hopefully by then there will be time to heal from the radiation, so the scan will be easier to read. I will bring the scan slides to my neuro-oncologist's office that morning, so I will know how it looks that day. My husband will be there at my side. We will learn together whether I am clean for now, or whether a new battle will be starting. Meanwhile, I will be tapering off the steroids, which tends to create a depressing biochemical effect.
This is the part of the journey that seems to be the biggest challenge. This part of the journey involves waiting and wondering and seeing tidbits of new challenges, while losing some energy. This is the new opportunity to exercise faith in order to conquer fear.
Thankfully, throughout this journey there has been an undercurrent of blessings. Every day I awaken to a prayer of gratitude. The experience has been so rich in so many ways. I received an email today from someone else who is battling cancer, and he told me something very profound: "Cancer gives more than it takes." And he's right. There is a lot of refining going on. A lot of love being expressed. A lot of focus on what matters most. And wonderful spiritual experiences. So far I am receiving a lot more than I am losing. Life has become more precious and meaningful to me. I wish I could drop the cancer part and just bask in these rich life experiences, but I don't think it works that way.
I often remind myself that adversity is often a way of testing and trying our faith, and that we receive no witness until after the trial of our faith. Sometimes there is darkness before the light can shine forth. Faith precedes the miracle. I told my husband the other day that I felt my faith becoming unshakable. Perhaps I threw down the gauntlet by saying that. Perhaps, like in the case of Job, Satan looks for more ways to try and get me to curse God and die. It's kind of like in Jurassic Park, when the raptors keep trying and testing the fences to find vulnerabilities. I remember a seminary lesson that I taught years and years ago, which included a quote about discouragement, and how that was the adversary's greatest tool for destroying faith. Maybe if I can recognize the scary and dark and discouraging moments for what they are, I can persevere through them in order to claim the witness...the light...the miracles.
My mom gave me her car analogy the other day, which I thought was a nice way to deal with this journey. She said that when she goes on a road trip, she has to first clean the junk out of her car. We should likewise clear the junk out of our minds and hearts. Junk includes fear, anger, doubt, discouragement, and stuff like that. She then makes sure she has fuel. We should have fuel, too. Our fuel is faith. And then she makes sure she has a key to start the engine. Our key is gratitude. If we have faith and gratitude, and if we have cleared the junk out of our hearts, we can move forward on our journey.
The idea of moving forward reminds me of a favorite scripture, this time from the Book of Mormon, in 2 Nephi 31:20:
"Wherefore, ye must press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end, behold, thus saith the Father: Ye shall have eternal life."
I don't know what the future will hold for me. To be truthful, none of us has any guarantee of the quantity of life. However, we have opportunities to recognize and take hold upon a quality of life. To quote my earliest post, to "seize the day". Every day is rich with opportunity. Every day is filled with blessings. Every day is a gift. As my parents have both taught me: the past is history, and the future is a mystery. Today is a gift, which is why it is called the "present". I can (and should) receive each "present" with gratitude.
I can press forward with a steadfastness in Christ. He saves me from anything that this cancer can do to me.
I can press forward with a perfect brightness of hope. I have hope, because I know that somehow I will be "wowed" by my loving Heavenly Father, who will never forsake me. He may grant me my petition and let me live. He may call me home. But he will never forsake me - or my family. We still have much to hope for, for-EVVVV-er.
I can have a love of God and of all men. Adversity is always an opportunity to develop humility and dependence on God. Opposition teaches us to appreciate the blessings in our lives. Suffering teaches us compassion for others who suffer.
I can press forward, feasting on the words of Christ. I have a renewed love of the scriptures and of the words of living prophets, because they are always relevant to me. They are delicious to me.
I can endure to the end. I have a wonderful support system of family and friends. I have countless prayers being offered on my behalf, and they sustain me. The scriptures teach me that I will not have any temptation that I cannot escape. To quote one of my favorite authors, Ardeth Greene Kapp, "Our trials will not be more than we can handle, but they cannot be less if we are to fill the measure of our creation." The Lord will always give me what I need to get through whatever I need to get through.
The "through" part still gives me reasons to shudder. The "through" part still means a pile of Kleenex wads on the floor by my bed. The "through" part is ever aware of this piece of my mind that has been destroyed by cancer, and the remaining pieces that remain vulnerable. But the "through" part can also focus on the "peaces" of this experience, and the remaining peace that is mine for the taking.