Tuesday, February 28, 2006
Today as I hopped on my treadmill and RAN (yay!) and marvelled at my cardiovascular endurance despite having had a couple months' interruption in regular cardio training, and ALSO marvelled at the absence of headache pain compared to this past weekend, I felt strongly that good things...healing things...were happening. This whole treatment regimen has been so amazingly tolerable, and I am so high functioning through this process, and it's a very good thing. I think it's a miraculous thing. I hope that it is only the beginning of marvels, wonders, miracles, and healings. Prayer has really been helping me - physically, emotionally, and spiritually - and it has also helped my family, so I thank each of you who prays.
Secondly, I'd like to request prayers for one more thing. Tomorrow I go in for an MRI scan. I know that it is for the purpose of directing the "boost" - the final concentrated radiation zap for a specific target area - and not for the purpose of gauging treatment effectiveness at this point. However, it is a somewhat nervous thing. They could see something that looks like progression. They could see something that is suspicious and unknown because of the amount of radiation inflammation, necrosis, and other things going on in my head right now. And maybe they could see a clean scan. Whatever. But because this is a nervous time, I would really appreciate some prayers to help me have an "accurate and reassuring scan" - whatever that might be.
Monday, February 27, 2006
Under my chemotherapy regimen I have been careful to eat an early dinner followed by nothing else, so that I can take my Temodar at bedtime on an empty stomach. This made Monday SPLAT workable except for the "T" for me (I just made sure there was something for my husband and son).
It's not a super huge deal, and I must say that the whole idea of not eating after dinnertime has been a great way to keep the scale in check despite being on steroids. But since last night was the last of my initial Temodar regimen, and I will be on a chemo break until April, it occurred to me this morning that the "T" I had planned for this evening's SPLAT would be available to all of us - including me! One of those little pleasures in life to get excited about!
However, with my being free to graze into the late evening again, we'd better be pulling on our clogging shoes a lot more often (headache or no headache). After all, I have an MRI coming up, and I want to fit into the tube!
Sunday, February 26, 2006
I've been more head-achey lately, but some of that has been due to bad eating and lack of adequate sleep. And it has been rather mild; not even worth taking a pain reliever. Until yesterday. I found myself very sensitive to noise, and by the time I went to bed I felt pretty sore. I awakened at 3:00 this morning with terrible headache pain and nausea, like a really super bad migraine. I took some ibuprofen and my anti-nausea medication, then went back to sleep and felt better this morning. This afternoon I will definitely leave this keyboard and take a little nap, because I still feel a little sore.
As I understand it, this is an expected situation and not necessarily one that causes alarm. Even so, because I am ever on the watch for signs of the "R" word (recurrence), things like bad headaches are unwelcome. However, I keep telling myself that this is evidence that the radiation is finally starting to do it's real job, because I can feel its effects.
I remember seeing a quote from Lance Armstrong, where he talks about his own cancer experience, and he said something about how the better he got, the worse he felt. I hope that's the case with me. I'm feeling worse than I have in the past six weeks, so I'm hoping that it's because I'm getting better!
...and even though this is the worst I have felt, I still think I'm doing pretty darn well, compared to what I would have expected. As I have joked recently, I generally have more energy AND more hair than my husband!
Today is my last day of my initial round of chemotherapy. The effects have been amazingly tolerable. Because Temodar is so efficient in reaching the brain and crossing the blood-brain barrier, they did not have to saturate my body with chemicals. It was really easy to take.
Radiation has also been generally tolerable, but this is the part of the process that gets more difficult. As long as it's doing what it is supposed to be doing, I'll take it - headaches and all.
Friday, February 24, 2006
The reason why this was so fascinating was that there was actually a placebo effect in this study. People who had the placebo treatment STILL GREW HAIR! Now, I could understand a placebo effect in something like a pain medication, where the power of suggestion could cause someone to feel better, but to think that someone could "believe themselves hairy" was really an amazing example of how the mind and body work together.
There was another study that Jim mentioned (can't remember the drug), that had an interesting result as well. It was meant to be double-blinded (as in, neither the patient nor the medical professional knew who was in the treatment group and who was in the placebo group). But in one facility some of the nurses thought they knew who was in which group, and the patients in the "believed to be treatment" group did better than those who were in the "believed to be placebo" group. What was so fascinating about this one is that ALL of the patients at that facility were placebo patients. So even someone else believing in the effectiveness of a treatment (on behalf of the patient) was making a difference.
It's an interesting thing to ponder, because we know that faith is an important component of any miracle. Faith is surely a key to unlocking the supernatural, and perhaps it also unlocks something that is already divinely planted within us to facilitate healing. No wonder the scriptures talk so much about requiring faith to be healed.
On a related note, I was talking briefly yesterday with my neuro-oncology nurse, who had called with my routine blood test results (yay - another week with white blood cells!) and as she chatted with me to see how I was doing, she commented on the value of a positive attitude. Those who give up don't do as well as those who are positive and fiesty.
Maybe my "inner beagle" will pay off. My favorite dog breed is the beagle. I grew up with a couple of them, and my husband and I have a fourteen-year-old beagle that we raised from a puppy. Buster the beagle is old now for a dog, and he has a heart condition and has been through two surgeries in the last couple of years, but he is still a spunky, merry little dog. Beagles have amazing tenacity. When Buster wants something, there is nothing that will stop him. I've heard stories of beagles tracking something of interest, and going after it so (pardon the pun) doggedly, that they continue even while leaving bloodied paw prints in the snow. So whenever I think of great tenacity, I think of someone having an "inner beagle".
And of course, because everything always ties together somehow for me, I was trolling through the scriptures and a passage jumped out at me about someone having had sufficient faith to be healed. I read that one and followed all of the footnoted scripture references. It was great, as always. Amazing things can happen when people believe.
And again this morning I read in Mark, chapter 9, where a man comes to Jesus with his son, who has a "dumb and deaf spirit". Jesus replies to him that "If thou canst believe, all things are possible to him that believeth." And the man replies, tearfully, "Lord, I believe; help thou mine unbelief." Ultimately the son was healed.
Sometimes being bombarded with medical realities can cause a feeling of "Lord, I believe; help thou mine unbelief." Sometimes we need help to soften our hearts such that we can have sufficient faith to crowd out the doubt that tries to creep in. Whenever I start to feel overwhelmed by information about this cancer and how grim and devastating it is, a little voice reminds me, "Trust not in the arm of flesh," and, "Trust in the Lord with all thine heart, and lean not unto thine own understanding. In all thy ways acknowledge him, and he shall direct thy paths."
In other words, just believe.
Monday, February 20, 2006
Don't know how long you've been here,
Growing slowly, at your leisure.
I didn't know you were up there,
'Til you made me have a seizure.
Then I had to have a surgery.
And I thought I might go blind,
Cause you were always on my mind
You were always on my mind.
You tried to take my life from me.
Thought I couldn't deal with cancer.
But I'm still Mom in my family;
I'm still a singer; still a dancer.
And I've got a lot more to do.
And I'll do it, you will find.
Even with you on my mind.
Even with you on my mind.
Now I'm planning to kill you
With these chemo pills I take.
Hoping whatever's left of you
The radiation waves will bake.
Between me and my doctors
We are spending lots of time
Trying to get you off my mind,
I don't want you on my mind.
Tell me, tell me that your cancer cells are dead;
Give me, give me one more chance to have a healthy head.
All the things I should have said and done
And I'm going to have the time
Once I get you off my mind
I'm going to get you off my mind.
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.
Sunday, February 19, 2006
This weekend was also our stake conference, which in our church is a special weekend of meetings where multiple local congregations meet together under the direction of both local and general authorities. We attended an adult meeting last night and a family session this afternoon, and I also attended a youth meeting very early this morning, because I had the opportunity to sing a duet at that meeting with one of my favorite students from back in the days when I taught voice lessons. I had the pleasure of meeting with many wonderful people, including good friends, the radiologist who read my first MRI scan (when the tumor was identified), a man who recently lost his wife to brain cancer (but she lived more than 20 years after her initial tumor diagnosis - long enough to raise her children) and a general authority who is also the son of our current prophet (who is also battling cancer, so I pray for him, too). In addition to the wonderful associations with great people, the meeting was a spiritual feast, and I found myself taking copious notes of different insights and thoughts that came to mind as I listened to the various speakers.
One of those insights was the concept of faith dismissing fear. I remembered my recent experience of feeling the love of my Heavenly Father, and how it drove all fear away from me at that moment. And I thought about how things might be in the coming months, and how apprehensive I might be feeling soon. You see, I am close to finishing my initial course of radiation and chemotherapy treatment. I will finish around the beginning of March, and then I will have a period of rest through the end of March. On April 5th, I go in for an MRI scan, followed immediately by an appointment with my oncologist to discuss the results. I will then go to a maintenance dose of chemotherapy, where I will take a very high dose of chemo medication five days a month. I will then have monthly oncology visits and MRI scans every other month to check for recurrence. Recurrence is obviously the main concern. If (or as they characterize it - WHEN) there is a recurrence, we will have to address it based on its size, location, and clinical effect. It may mean more surgery. It may mean experimental treatment. It may mean gamma knife. It may be inoperable and life-threatening. We don't know, and we pray that it will simply not happen. (My favorite part of the discussion about these next steps was about the maintenance dose of chemo, when I was told that they would want to do that for about 18-24 months. Considering my statistical prognosis, I was just so thrilled at the idea of me doing ANYTHING for 18-24 months!)
Anyway, I have felt very apprehensive about the idea of going in for these scans, starting in April and continuing every other month. I am sure that they will be very nervous times. But during this recent meeting I had the opportunity to ponder the concept of faith vs. fear, and I felt a calming reassurance that EVEN IF there is a recurrence - no matter what the scans reveal - I am being watched over and cared for through this process. It will be okay for me and my family. We will be given what we need. I should not fear. I can have sufficient faith to carry me through these times of uncertainty. I am hopeful that I will be able to remember these thoughts when the time comes.
Shortly after this topic was discussed in the meeting, there was a beautiful musical rendition of "Be Still, My Soul". I've included these lyrics in an earlier blog post, but they are worth repeating, because they were the perfect complement to what I was realizing during the meeting:
Saturday, February 18, 2006
When our son was about 2 1/2 years old, we decided to formally pursue adoption in the hopes of giving him a sibling. We contacted LDS Family Services (our church-based agency), completed the homestudy process, prepared our "marketing literature" (as in, a birth parent letter and a photo collage of our family and a website profile), and began the waiting process, hoping that a birth mother would select us from among the many waiting and hopeful families.
It reminded me of putting my house up for sale. You get everything spruced up, the realtor puts together a nice marketing package, adds your house to the listing, and you wait breathlessly to see how much interest there will be. At first, we thought, "We are such a great family. We'll get chosen right away." After a month "on the market", we started to have more realistic expectations.
We asked our son, Jacob, whether he would like us to get another baby for our family. His answer was, "Noooooooooooooo." Why would the solar system need two suns to revolve around?
We waited about a year and a half with no substantial nibbles. Meanwhile, I had become involved in the adoption community as the local co-chair of Families Supporting Adoption. I learned about the famine of unwed mothers choosing adoption. Single parenting (and outside our religion, sometimes even abortion) seemed to be more socially acceptable than this loving choice of making an adoption plan. I wished that more people knew our story, and how this loving choice blessed a little boy named Jacob. Meanwhile, we prayed for a child, and our son continued his insistence that with such quality, we could forget quantity of children.
Until spring of last year. Suddenly Jacob started to tell us, completely out of the blue: "We need a baby sister for our family." I thought it was interesting, because the subject of gender had always been left up to chance. In our adoption application we were asked to mention preferences like gender, but we figured we would treat it like a pregnancy, where you don't get to be choosy about stuff like that. So I asked Jacob, "A baby sister? Not a baby brother?"
"No. Girl." He was certain that he needed a sister. He had such confidence, I was tempted to ask him where he thought she would be coming from! He had no clues there, but he ultimately decided that her name should be Emma. Apparently we had nurtured his ego to the point where he would always be the center of our universe, and so adding "big brother" to his resume would only enhance his status. He felt completely comfortable with the idea of a baby sister coming into our world.
As an interesting omen, we sold our house in one day. We were thinking about moving into a bigger house, and while we were looking at homes, our house sold before it even listed. It was cool. We found another home only a few miles away, and joyfully made the move. Since this was our fifth house in ten years, we promised ourselves that this house would be the LAST one we bought until retirement. (I kind of shudder now at the idea of "the last house", because that has an eerie new meaning. I keep praying for a miracle so that the "until retirement" stipulation would have relevance.)
Two weeks after we took possession of our new house, I received a phone call from another agency in Ohio. The case worker knew me through my involvement in Families Supporting Adoption. She had told me before about some adoption opportunities with their agency, but in the past they never seemed right for us. But this time, something felt different. A baby girl, due very soon in Washington, D.C. She is African-American. Her birth parents are both willing to sign relinquishment papers. Something in my heart responded to this one like no other. I told my husband about this, and his heart did something, too. We decided to find out more. That was on a Saturday.
Unfortunately, when we called the agency back to let them know we were interested, we learned that the birth mother was already working with another couple. It was disappointing and rather confusing, given the feelings we had about this situation. That was on Monday.
On Thursday, I received another call. The other couple was out of the running. They couldn't get the loan that they needed for the agency fees. Were we in a position to act quickly if we were chosen? I told her that we were. (We pay our tithing and the windows of Heaven always open up, just like Malachi describes.) A conference call was scheduled between us, the agency case worker, and the birth mother, for the following day.
On Friday we had the conference call. I felt like I was talking to an old friend, not a complete stranger. We shared ideas, hopes, and dreams. It was a nice conversation. I felt very comforted and assured that this was a good thing. One of my questions was whether this African-American woman had any reservations about placing her baby with a white Mormon family. She didn't. She said she had no race preference, and she had no religious preference, except that she wanted the baby to grow up in a family that was active in a religion, so that she could be taught good values. I admired that about her. We talked about music, and I found out later that this (pardon the pun) struck a chord with her, because music was important to her. She loved the fact that Jared played the piano (thanks to his mother, who made him practice as a kid) and I sang and directed my church choir. Fifteen minutes after the phone call, I received another call from the agency. We had been chosen. We are officially "expecting" a baby. Wire lots of money right away, and find an attorney in the DC area. When the birth mother goes into labor, we'll get a phone call, and we'll have to drop everything and fly to Washington DC.
We picked up Jacob from preschool that afternoon and told him: 1) we are taking a family trip to Washington DC sometime soon (which was exciting to him, because we had taken a trip there for business & pleasure the previous year and he loved it); 2) we are going to see Grandma and Grandpa (Jared's parents, who live in the DC area right now); and 3) we are going to get a baby sister! Jacob was reeling with joy at all of this news.
On Monday morning (June 20, 2005 - just one day after Father's Day), as I was meeting with a client and explaining how I might need to be out of town for a while, my phone rang. The baby had been born. Birth mom had a really easy, really fast labor. We dropped everything and scrambled to get on a plane. We arrived in DC late Monday night.
On Tuesday morning the three of us held hands as we tiptoed into the hospital. We entered a room where a beautiful woman was holding a beautiful baby girl. Our baby girl. Our Emma. At first we were taken aback at how stunningly beautiful her birth mother was. And as we held this new baby girl in our arms, we were taken aback at how beautiful she was. Even Jacob commented about how pretty she was.
The next morning, Emma was discharged from the hospital and released to her birth mother, who placed her in our custody. Her goodbye was surprisingly unemotional. We were amazed by her beauty and strength.
A week later, after all the interstate compact stuff was completed, we were finally able to legally bring Emma home to Texas. The legal process was once again easy (again, thanks to a good family law attorney who happens to be my mom) and Emma was legally ours on July 29, 2005. On September 3 we took her to the Dallas Temple for her sealing (and as I mentioned in a previous post, that is the day of the picture in my profile). Our for-EVVVV-er daughter.
Adopting a child from another race was something we hadn't spent a lot of time thinking about. It was one of those things that we weren't necessarily opposed to, but it wasn't something that we were actively seeking, either. It just happened for us, because when this child was mentioned to us, something in our hearts responded. It wasn't just because we had been waiting so long. There had been other opportunities presented by this agency, which did not feel right. This one felt right. When we prayed about it, we felt assurance that this baby should be in our family. This was our Emma.
Sometimes people have asked us if we had considered all of the ramifications of being a trans-racial family. Yes and no. We had certainly attended adoption classes, and we knew people who had adopted outside their race. We had some familiarity with the concept. We found a good book on the topic. But really - this was our "one step enough for me" moment. All we needed to know was whether this was something we should pursue. We prayed. We got an answer. It was YES. That was enough for us. We knew that the rest would work itself out. And so far, it has. We love our Emma. Jacob loves his "Baby Sister Emma." One of the most rewarding things for me is seeing them interact as siblings. They both love each other and respond to each other so beautifully.
A week before Emma turned six months old, I was diagnosed with brain cancer. This young baby, not yet old enough to speak, had already taught me an important lesson: the "one step enough for me" lesson.
One step was enough in the case of adopting Emma. It was a happy situation. And now I am in a situation of adversity, where I don't see the whole path that this cancer experience will take. But I can be led one step at a time. One day at a time. One decision at a time. If I can prayerfully find my steps, I can have confidence that the rest of the path will unfold as it should.
As I sat with Emma in church one day and listened to her try out her "future opera singer" voice, I instinctively showed her some techniques from my days teaching voice lessons. ("Emma, drop your jaw and be a little more vertical, Sweetie! Like this!") And it occurred to me that this beautiful child - who was given to our family because we were musical - and who was a future woman - needed me to be her mother. I long for the opportunity to really teach her to sing. To give her a guiding hand as she grows into womanhood, just like my mom did for me. That is the path that I pray to be able to travel.
I know that the path will be guided by the One who will lead me wherever I need to go to fulfill my destiny and eternal potential. He knows how this path, "through thorny ways leads to a joyful end". And so instead of trying to see the whole thing myself (and worrying if I can't), I know that I can walk this path if I am guided one step at a time.
Friday, February 17, 2006
I did want to be his mommy. I wanted to be ANYONE'S mommy, in fact. For years that opportunity eluded us, despite our efforts to pursue the best that science fiction could offer. It was six years ago - February 16, 2000 - that I suffered a heartbreaking miscarriage. It was my only pregnancy, lost as mysteriously as it occurred. It was a time when the Lord had to say "No, I'm sorry", and there was a time of considerable grief. But we were blessed through that experience, which ultimately led us to the "great joy of my life": my son, Jacob.
(By the way, before I tell the story of Jacob, I have to point out that my odds of conceiving naturally were supposed to be virtually zero - just like my odds of surviving glioblastoma multiforme for five years! My odds of miscarrying were supposed to be less than five percent, once we saw the healthy heartbeat on the sonogram. So maybe I'm just meant to live in the small minority. In the case of this cancer, let's just hope so!)
In December 2000 we were approached by my mother about an adoption opportunity that came her way. She is a family law attorney (which, by the way, is another example of how my family members bless me with their talents and occupations, including my physician brother, my MBA father, my MBA student brother, and my "baby" brother who is a gifted artist and budding physical therapist). Anyway, our initial reaction about the adoption opportunity was cautious, but we received a dramatic answer to our prayers that THIS child was to be OUR child. This was a baby boy, due to be born in the spring. His birth family received a similar spiritual witness that this child belonged in our family, and that he was going to be an answer to our prayers.
On March 11, 2001, my husband boarded an airplane for California. The company he worked for was moving there, and although he chose not to relocate, they asked him to travel and train people at the California office. He felt funny about going, even though we were told that the baby was not due for a couple more weeks.
On the evening of March 12, I sat home alone, thinking it would probably be a good idea to start packing "the bag" - the one we would grab and dash out the door with, as soon as we heard that the baby was being born. He would be born in Houston, and we lived in the Dallas area. We would have to be ready to move quickly. But then I dismissed the thought, thinking I had plenty of time to do it later. After all, he wasn't due to be born for a couple more weeks. (Big lesson learned - always listen to those ideas that come into your head!)
On the morning of March 13, I was awakened by a phone call from my mother. "Jacob may be born today." (Jacob was the name we chose for this baby boy.) His birth mother was in the hospital, in labor. I called Jared and told him to fly to Houston as fast as he could, and then I ran around the house like a crazy person, trying to throw stuff into "the bag" - that one I should have packed the night before, when the thought occurred to me. (Always listen to those thoughts!!!) I then had to run to the office where I worked, to tie up some loose ends and let them know that I was officially on maternity leave, effective immediately.
Shortly after noon, I was finally on the Dallas North Tollway, speeding southbound toward Houston, when my phone rang again. "Jacob has been born!" My mother's tearful, joyful voice proclaimed the happy news. I am amazed that I survived the rest of the drive! As I drove in my shocked and joyful state, I picked up my cell phone to call Jared ("Hurry, honey! Guess what?") and my dad ("Can you bring thirteen white roses to the hospital?"), and then I zoomed for hours, digesting this amazing news. I realized how funny it was that we were now one of "those people" for whom thirteen is actually a lucky number. Our new son was born in the thirteenth hour of the thirteenth day of March, in the thirteenth year of our marriage. Lucky Thirteen.
I arrived at the hospital four hours later. Mom met me in the parking lot and took me inside. I entered a hospital room, where a beautiful young woman was lying in bed, surrounded by family and friends. One of them held a small bundle. She took the bundle from her friend, cradled it for a moment, and handed it to me. "Here is your son." I held my son. He was the most beautiful thing I had ever seen. I was overcome with joy.
Jared had all kinds of problems with his flight, and he didn't land in Houston until 10 pm, so he missed visiting hours. I tortured him with pictures and video of Jacob, and a recording of Jacob crying on his cell phone voice mail. The next morning, we went back to the hospital together. He saw Jacob. His look of complete love and awe reminded me of my own feelings during that precious first moment of discovery. He was ours.
Forty-eight hours after the birth, it was time for his birth mother to sign relinquishment papers and place Jacob in our custody. It was her personal moment of Gethsemane. It was almost too sacred to watch. But there we all were - Jared, me, Mom, birth mom, birth family, witnesses, notary, etc. Watching her tremble and weep, then take a deep breath and do what she had resolved to do. She gave this baby life, and she gave him the family that he belonged in. When she finished, Jared swallowed her up in a hug and tearfully thanked her. We had a family prayer together. And then it was time for goodbye. We love her so much, and are ever thankful for her resolve to follow what she knew was the Lord's will for this baby.
Six weeks later we were in a courtroom, finalizing Jacob's adoption. It was faster than we thought it would be. The judge, a kind and grandmotherly woman, was willing to waive residency requirements in the best interest of the child. He was ours. A month later he was sealed to us in the Dallas Temple. For - EVVVVV - er (to borrow a line from an earlier post).
When I ponder this story, I marvel at how the Lord "WOWED" me. This was not a case of "Okay, daughter, here is your baby. Sorry for the wait," as though this were a cheeseburger that took too long during the drive-through at McDonald's. This was like Charlton Heston, poised over the Red Sea, telling the Israelites to behold the power of the Lord. Sometimes I picture Him carefully crafting the most perfectly customized child for our family. He fits our family so perfectly. Our Jacob. Our child. Our great joy. In one moment...one birth...one woman's sacrifice...our lives changed from one of waiting and hoping, to one of unspeakable, daily joy.
We were "WOWED". This was "eye hath not seen" kind of stuff. We have no ability to fully comprehend the kinds of blessings that are in store for us if we can hang on faithfully through our lives and our moments of adversity.
The path that led to Jacob was a thorny one, but it didn't matter, because it led to Jacob. To the big WOW. Today, we are on a thorny path again - one called Cancer. I don't know how long it will be. I don't know how painful it will be. I don't know if I will have another "No, I'm sorry" answer. I don't know if there will be another season of grief for my family. I continue to pray for a miracle to save my life, and I know that I can have one if it is in accordance with the Lord's good will and plan for me. I also know that somehow, some way, whether it be in this life or the next, He is going to WOW me again. I feel it all the way to my bones. I have learned to expect it. I joyfully anticipate it. I strive to endure this trial well, so that I can lay claim on the WOW. I trust completely in His love for me. Every time I see my son, I realize that he is a symbol of the WOW that is yet to be.
Wednesday, February 15, 2006
We started a thing long, long ago (long before we knew this would ever become a reality), whenever my husband would express the desire to try some kind of daredevil activity, like skydiving or rock climbing or doing fighter jet training or buying a motorcycle. I would never let him do those things. Instead, I would say, "Put it on the list."
"The List" was a list of things that he could do after I died, to keep him occupied without having to remarry. (And my real motivation was that it would hopefully hasten our reunion!) It was kind of just a joke thing. It's kind of icky now to think that maybe the list might be relevant. Of course, now the biggest consideration is for the children. He certainly can't orphan the children, so the list is off limits! (Darn - which brings us back to a second wife.)
I trust my husband completely. He has my power of attorney for all things, including my healthcare. He can choose to pull the plug if it ever gets to that. I told him that I wanted him to talk to my family, talk to the doctors, and then pray. I knew if he did those things, he would make the right decision. And I gave the same stipulations when it comes to remarriage. I didn't want to forbid it, nor did I want to encourage it. I trust him to do the right thing for our family. Get information. Pray about it. Make a good choice to bless our family.
Meanwhile, I am really hoping for the miracle, so that all of this remains theory instead of practical application!
Valentine's Day, as usual, was one of romantic delights. Jared took the day off work and spent it with me. We had a romantic lunch date after my radiation treatment, and as we left the cancer center and got into the car so that we could head to lunch, I was surprised by two gifts on my seat. They were two different statues, each depicting a woman holding a child. One child reminded me of our son; one reminded me of our daughter. Symbols of great joys in my life. There was also a Valentine card with some very touching remarks that made me grateful for the Kleenex in our car! After lunch we shopped and played and talked and just enjoyed our time together. We had a romantic family dinner at home that night with our children, and played a family game together, where we spin the bottle and tell that person what we love about them. After dinner the doorbell rang, and three other men showed up. I was ushered into the living room, where a video camera was trained on me. My son sat in my lap, and my husband joined the three men to form a barbershop quartet, serenading me with love songs. It was a huge treat! It was a wonderful day.
The story of the great love of my life is one I love to tell. We were born in different parts of the country (I in Illinois, he in Mississippi), but we both ended up living in Lindon, Utah, attending Pleasant Grove Junior High School. I first knew him in the eighth grade. We were both eighth graders who made it into the ninth grade band. He played the trumpet and other brass (hence, the good pucker) and I played the clarinet. I knew him peripherally at first, and then I got to know him as that nice boy who lived down the hill from me, who would sometimes sneak his parents' car and drive me home from my bus stop. At that time my bus stop was at the bottom of a long, steep, gravel-paved hill, and my house was at the top of it. So I liked getting a ride from this nice guy.
As we moved from junior high into high school, we both became part of the Cloggers West clog dance team (whose claim to fame at the time was "Age Division World Champions"). We both started out on the "farm" team as sophomores, and both got tapped to join THE team our junior year. As members of the same dance team, we became friends. My girlfriends and I loved to hang around him because he was cute and fun and flirty. He would tickle me at the drinking fountain, just to be a flirty kind of guy. He always had what I called a "harem" around him, because he was a chick magnet. But fortunately, he wasn't the tomcat kind.
In the fall of our junior year there was a school dance called the Sweater Swing. It was a girls' choice dance. A friend of mine was going to set him up with a really pretty girl from another town, but there was some kind of mixup and it wasn't going to happen. She felt bad. I decided I'd ask him, since I wanted to go with someone who was a fun friend, and he was definitely good date material. I asked him. He said yes. That was two weeks before the dance, which took place on November 24, 1982.
Within that two-week period, I somehow fell - BOOM - in love with him overnight. He fell - BOOM - in love with another girl. She was cute, smart, talented - everything. I thought there was no way I could compete! Our date ended up being most awkward, because we both knew where our hearts were. But he was still kind of fun to me anyway.
I spent the winter agonizing over whether he would get Miss Perfect out of his system and get me into it. And I started noticing that he and his friends would shoot basketball hoops during lunch. So I suddenly became a huge basketball fan, and would wander their way to shoot hoops with them. (His friends finally told him that - hey - she isn't doing this because she likes basketball!)
A couple of months later, after Miss Perfect was (hooray) no longer in the picture, I invited Jared to play racquetball and eat pizza. We went to the local recreation center, played, and ate pizza on the lawn. It was fun again. My hopes were high. Meanwhile, during all of these months, we continued to dance together in Cloggers West, and spent lots of time on road trips and at performances and stuff, and I always tried to be his dance partner whenever I could.
FINALLY - on May 16, 1983 - Jared caught me during class and asked to speak to me afterward. When the bell rang, he explained that his youth group was going out for a special dinner the next evening, and they were supposed to bring dates. "I kinda need a date," he said. My first thought was, did he want me to BE his date, or did he want me to FIND him a date. To my utter joy, he was indeed asking me to BE his date! I said YESSSSSSSSSS! and begged my mom for permission to go. She said yes.
So on May 17, 1983 (a day, which, by the way, he still remembers as a special anniversary), I sat through my AP History exam at school and failed it miserably. I had "Jared Jared Jared" on the brain, anticipating our date that evening. We went to a nice restaurant in Salt Lake City with his youth group, and we had a great time together, talking about anything and everything and nothing. After our date, he took me home, walked me to the door, and gave me a little kiss. A little kiss that made a big impact. I was hooked for sure, and have been ever since. With a couple of temporary exceptions, we have been an item since then.
We were still an item when Jared received a mission call to serve our church in Tokyo, Japan. I wrote him for two years and finished college and kept a shrine to him in my student housing apartment. I was so proud of him for serving as he did, but I was also one happy girl when he finally came back home. Five months after he returned home, and one week after my college graduation, we were married. August 20, 1988. 10:40 a.m. Salt Lake Temple. Signed, sealed, and delivered. For - evvvvvv - er.
We had a fairy tale reception in Salt Lake City, with throngs of family and friends wishing us well. We spent our wedding night at the Doubletree Inn, and then honeymooned in Star Valley, Wyoming. It was a dream come true. We settled in an apartment in Provo, Utah, and moved briefly to Orem, Utah. Before our first anniversary we had an opportunity to move to Texas. We lived in The Woodlands (close to Houston) for six years, then moved to the Dallas area.
Seventeen plus years later, and after plowing through the ups and downs of life (including employment changes, heartbreaking infertility and pregnancy loss, professional successes, two joyful adoptions, buying the dream house, and now...cancer), we remain best friends who are also madly in love with each other. It is the most satisfying relationship I could have ever possibly imagined. If there is such a thing as a soul mate, Jared is mine. I am his. We still talk about anything and everything and nothing, and I just feel our hearts knitting together as one. We still dance together, and I always remember those days of yearning to be his dance partner. They say to be careful what you wish for, but this time I got exactly what I wished for. My Jared. It was even more wonderful than I thought it could be.
I am so grateful that he is here for me now. He does so much for our family. He helps me so much, and does it with so much grace, despite the weight of this burden he is bearing. My parents are grateful that he is here for me. They have both expressed that gratitude. Our children are grateful that he is their daddy. He is not only the best husband I could have, but he is also the best father for our children. He is awesome. I love him dearly and hope that a miracle will keep us together as long as possible here in this lifetime. I am grateful to know that regardless of what the future brings, we know that our marriage is designed to last far beyond "'til death do us part."
Tuesday, February 14, 2006
Valentines are a fun way to say "I love you". There are lots of ways to say, "I love you". I was thinking about it the other day, when my mom left her jacket at my house. (It's actually a really cute one, and if I were as skinny as she is I could have borrowed it!) But anyway, it's the second time she left it here, and we laughed together about how sometimes that is considered to be a high compliment, because it represents a desire to come back for it!
Last night I wore something small and red to bed. Not what you're thinking (ha ha - not talking about THAT way of saying "I love you!") - it was actually a new, red, football mouthguard to help keep me from grinding my teeth at night! I think it's a stress thing, and since I don't want to hurt or lose my teeth, I thought it would be a good idea to start trying. My husband sleeps with a special mouthpiece to help relieve TMJ symptoms (it works really well), and I have always given him a hard time when he tries to talk with that "mumbler" in his mouth. So last night, as I was mumbling myself, we had a laugh about how imitation is the sincerest form of flattery.
So sometimes we can say, "I love you" in subtle ways as well as direct ways.
There are many direct ways that God says, "I love you." Countless direct ways, in fact, especially as we count our many blessings. But there are subtle ways, too. For one thing, I have really come to appreciate the refining opportunities that are inherent in any situation of adversity. If we let them, these experiences can help us become more humble, more charitable, more dependent upon the Lord, and more grateful for the good things in life. In other words, we become closer to the One who wants us to draw near unto Him. Maybe that's why some of these experiences are allowed to happen under His careful, watchful eye. These experiences, though very difficult at times, can be rich with blessings.
Monday, February 13, 2006
My mom came up on Saturday and took me shopping (my favorite extra-curricular activity). As we browsed the local mall, we came upon a kiosk that sells hairpieces and extensions and stuff. I showed my "mangy-yet-still-hideable-for-now" plight to the sales lady, and within minutes she was working her magic on me with a couple of little filler pieces that wrap around a ponytail and jam onto my head with a comb. They were cute and curly and fun, and I was in the mood for a romantic look for this Valentine's weekend, so we went for it, and I went bouncing out of the mall with a fun new "do". (And by the way, as the sales lady was completing our transaction, she asked for my name so that she could pray for me. I was very touched.)
When we got home, my son looked at me and said with a grin, "You have funny hair, Mommy!" Luckily my husband's response was more favorable!
Mom also offered babysitting so that my husband and I could steal away for a date Saturday night. My hair was obviously all done, so I put on a nice outfit, and out we went! Our first thought was to head for one of our favorite restaurants, but then I realized that time is of the essence when it comes to dinner plans. I need to eat early, especially if something is heavier than normal, because my chemo medication is taken at night on an empty stomach. So we called the restaurant on our way there and explained the situation. No problem, they said. We told them our favorite entree, and they packed it up for us "to go", complete with salad and bread, and even real utensils and cloth napkins (since they didn't have disposable utensils and napkins). By the time we arrived at the restaurant it was ready for us to pick up. We ended up parking our Explorer, folding down the seats, and having a romantic little picnic in the back while Lionel Ritchie crooned to us from the CD player. And then we talked and talked and cried and talked - just liked our dating years (except we didn't cry so much back then)! One of the things we always liked about our relationship was how it felt when we sat and talked about everything and anything and nothing. And Lionel Ritchie provided the musical backdrop for those moments back then, too. It was a sweet, peaceful moment. And then after we ate, my husband topped off the night by taking me SHOPPING! (He knows me really well.) It was wonderful.
I wore my "piece" again on Sunday to church, where I was once again filled with peace and joy and love. As the choir director and the Primary music director, I combined both groups for a darling rendition of "Love One Another" during our sacrament meeting service. They sang their hearts out and made my heart sing. Even my son (who is usually too shy to come forward when the Primary group sings) came up there with his daddy (my favorite tenor in our choir) and sang his little heart out. A peaceful, joyful moment.
One of many highlights of my Sunday also included the first in a series of "recording sessions" that have been offered to me by a dear friend. He is a master musician and has a virtual recording studio in his home. He called my husband shortly after my diagnosis and offered to let me come and record my voice in his studio. This way my family will always be able to hear me sing. Yesterday was my first session. We were able to capture four different songs, including two lullabies that I normally sing to my kids (including that "Two Little Shoes" song for my son). We made plans for more, including some duets with my husband, which will be extra special. It was really nice.
A nice, peaceful, "piece"-ful, and joyful weekend!
Shortly after my neurosurgery, when I was particularly worried about something, Jim (as always) gave me some very good advice. He reminded me that my doctors are the ones who are supposed to be handling my medical situation. It's their job. My job is to give them the input they need, so that they can do their job. I often tend to find just enough information to be dangerous, and I would worry about things that may or may not need to be worried about. But when I took his advice, it got a lot easier. I have two great oncologists who have amazing communication channels, so it's easy for me to put the burden of my medical questions and concerns on them. It's their job to handle it, and they have the training and the skill and the experience that they need in order to do that. So it's great advice, and it saves me a lot of extra concern.
I was reminded of an interesting parallel while reading the scriptures. By the way, I have taken many different approaches to personal scripture study. Sometimes I just pick a book and start with Chapter One and plow on through. Sometimes I go to my Topical Guide reference, and pick a topic ("faith", "healing", "hope", or whatever), and read whatever is there on that topic. And sometimes I just kind of browse through and look for something to pop out at me. The latter was my recent experience. (I'm always amazed at how relevant those "pop-out" scriptures can be. I always think it's a tender mercy moment.) I ended up in the fourth chapter of Phillipians, which included the following:
"Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God. And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus."
In the footnotes I found translations for "be careful for nothing" as, "Don't be unduly concerned about anything"; or "Be afflicted by nothing". Paul is basically talking us down from the ledge by letting us know that instead of being agitated over things, we should turn our problems over to God. It is His job to take care of His children, and He is supremely qualified and skilled and experienced in how to do that. It is our job to give the input, and as Paul says, we should do it "by prayer and supplication with thanksgiving".
I also found in my footnotes some related scriptures:
- Psalms 55:22 "Cast thy burden upon the Lord, and he shall sustain thee..."
- Proverbs 16:3 "Commit thy works unto the Lord, and thy thoughts shall be established."
- Matthew 6:25 - 26 "Therefore I say unto you, Take no thought for your life, what ye shall eat, or what ye shall drink; nor yet for your body, what ye shall put on. Is not the life more than meat, and the body more than raiment? Behold the fowls of the air; for they sow not, neither do they reap, nor gather into barns; yet your heavenly Father feedeth them. Are ye not much better than they?"
Speaking of arias, as I pondered this later, I had another song come into my head; one that I sang many times before from Mendelssohn's Elijah: "O rest in the Lord; wait patiently for him, and he shall give thee thy heart's desire. Commit thy way unto him and trust in him, and fret not thyself because of evildoers." (Quoting Psalms 37:7)
And then I noticed another parallel in my son, Jacob. He is such a sweet and tender child, not yet five years old. Recently he wanted something, but instead of just asking for it he ran up to me, crying for it. I assured him that he had no need to cry and run around upset. All he needed to do was tell me what he wanted. I know how to take care of things for him. And as I was giving him this counsel, I realized how it fit in with these other thoughts.
It's just so interesting how these thoughts swirl around in my head. I have music, scriptures, a motherly moment, and the wise advice of a brother coming together to an important point: put this in the Lord's hands and be still. It's a great reminder. It's a great source of peace in the face of things that are pretty darn scary and overwhelming at times. There is a great sense of confidence that the Lord knows what each of us needs. He knows us and loves us. He has a plan for us. He will take care of us, even through our afflictions. We "establish our thoughts", or declare our motives and desires, by putting forth our petitions in prayer. We lay it all out there, and we can rest assured that our prayers are heard. (ALL prayers are being heard - which, by the way, is why I need to say THANK YOU to all those who are praying for me!) The Lord knows exactly what to do for us, and will help us according to our needs and according to His will.
This concept is represented well in a lovely piece of artwork that I have in my bedroom, entitled, "I Will Not Fail Thee, " and it depicts a young woman whose head is being cradled by a robed man as she sits at his feet. It is a very comforting picture that reminds me of this advice. (By the way, and at the risk of sounding like a commercial, I know it can be seen online at the artist's website: http://www.hegsted.com/willnotfailthee.html)
No more stewing on my worries. No more fretting and wondering what I should do about this or that. Whether it's a medical symptom or the occasional "I have CANCER!" panic attack, it's not my job to figure everything out myself. Turn the medical question over to the medical staff, and I don't have to worry about it anymore. They will know what to do. Turn my life questions over to the Lord, and I don't have to worry about it anymore. He will know what to do.
Saturday, February 11, 2006
I do have this really awesome wig that was given to me by the social worker at the cancer center. It is a similar color and length to my own hair.
Sometimes I will run into someone who asks (with their eyes or with their voice) whether I'm "wigging" or whether I'm sporting what's left of my own hair. I'm often anxious to satisfy their curiosity on this topic, so here's a clue:
The answer is simple: "By their roots ye shall know them!"
That's right, baby! Even though my own hair keeps me covered so far, the thought has crossed my mind a couple of times to go for the hair hat, just because the roots look better! My own roots are long due for a touch-up by Carlos, but it's just not a good time for that. It's a minor visual annoyance to me, but as a couple of my gray strands start to pop up, I just remind myself that I'm envious of old age anyway.
So, hey, if you can see what I mean (and now I've drawn attention to my lousy roots!), you know I'm "keeping it real"! If you see me with perfect roots, you'll know that I'm in Astroturf mode (albeit a really cute Astroturf mode)!
We're having a really big cold front come through this weekend. I'm just glad there's SOMETHING on my head!!!
Friday, February 10, 2006
If you do the math*, a person who lives the average life expectancy of about 77 years is really only here for a matter of minutes:
365 days x 77 years / 365000 days = 0.077 days (although, no I didn't consider leap years - too complicated!)
0.077 x 24 = 1.85 hours or 110.88 minutes.
About the length of a movie (or in other words, a "flick").
*(Okay, so the math exercise is also a nice neurological test. Just keep in mind that math was never my strongest subject!)
Anyway, the point is that even for those who reach the average life expectancy, it's not a long time, considering the eternal perspective. For those who get to have Willard Scott show their face on a Smucker's label during the weather report, it's the equivalent of a slightly longer movie (a 144-minute flick).
Normally, though, life seems so huge and long - unless you start looking at it backwards. When I was young, I used to think 38 (55 minutes) was practically middle age. I was dating my husband-to-be when my parents were my age. Now I'm 38, and I'm bouncing two little kids on my knee. I feel like I just started to be a grown-up. I still can't believe that I've been married seventeen years (or 24 1/2 minutes). Like they say, time flies when you're having fun. My dad puts it as, "We get too soon old and too late smart."
I have a dear friend who is also battling cancer. Her mother reminded her that in the big scheme of things, this lifetime is "just a flick of the finger". My friend replied that she wanted a really long flick! So we've decided to just keep on praying for our miracles, so we can start a girlie rock band together, called The Longflicks. (Between her radiation tattoos and my possible punk hair, we could look like a girlie rock band!)
But anyway, whether we get a short flick of the finger here in this lifetime, or whether we get a long, movie-length flick, it still is just a small part of the big picture. As I have had many occasions lately to ponder life in its real context, it changes a lot of perspectives. I've noticed that many of the things that used to easily scare me or stress me out in my "B.C." (before cancer) days seem so trivial now. (Of course, I obviously have new things to scare and stress me, but faith and hope can help keep those at bay.)
The things that happen during our hopefully-movie-length life are so fleeting. Some are joyful, and they never seem long enough. Some are difficult, and they seem to last too long. But really, all of it is just in a moment. A priceless moment, filled with opportunities to make what we can out of it. To learn what we can learn. To love and serve as much as we can. To build things of lasting value, like our talents and our knowledge and our relationships and our faith, because those get to stay with us. To loosen our clutch on things that are trivial.
I just think it's ironic that my favorite movie (my favorite "flick", if you will) is Gone With the Wind (238 minutes or 3.96 hours). If they were God's minutes, it would be a little more than 165 years of lifetime!
Wednesday, February 08, 2006
My husband, Prince Charming, helped me post a picture of our family in my blog profile. The picture happens to be one that was taken on September 3, 2005: exactly 79 days before I found out that I had a brain tumor. (It's kind of funny - I look at every picture from 2005 and wonder if some tiny little cancer cells had already begun their evil journey behind the smiling eyes.) Anyway, this picture was taken outside the Dallas Temple, the day we brought Emma there for the first time. Her adoption had been finalized, and we were able to have her sealed to our family. Four years earlier, we did the same thing with Jacob, but it was fun to have him there with us again to witness his sister's ceremony, at an age when he might have some memory of the experience. More than seventeen years earlier, my husband and I (who felt very much like a fairytale princess) were married and "sealed" in the Salt Lake Temple.
In the LDS faith, sealing is a special temple ceremony that binds family members together "for time and all eternity". It is done by special authority that is reminiscent of the moment recorded in the New Testament, where Peter is given authority that "whatsoever" he binds on earth "shall be bound in heaven." It is a comforting and reassuring blessing to know that our family relationships need not be confined to this brief mortal experience. It is fun to explain this to our son, who now proudly proclaims that his family is..."For - E V V V V V - ER!"
I think I mentioned in an earlier post about the "kissing hand" thing that my son and I did together, after reading a children's book called, The Kissing Hand. I gave him a kiss in the palm of his hand, and he did likewise to me. If we're ever apart, we can each put our "kissing hand" on our cheek to retrieve our kiss. It's a cute game that we play. ("Oh, Jacob, when you were at school today, I missed you. So I used my kissing hand to get a kiss from you!") Sometimes he will ask for a recharge of his kissing hand, so I kiss it again for him. But I always remind him that the kisses I put on his kissing hand will never wash away and never wear out, because I am his "For - E V V V V V - ER" Mommy, and he is my "For - E V V V V V -ER" Jake. So those are "For - E V V V V V - ER" kisses on our kissing hands. (But we can add more if we want, just because it's fun!)
My family. My parents and my brothers (and even their wives and kids). Grandparents, aunts and uncles, cousins, and so on. My Prince Charming husband. (And even his parents and siblings.) My two beautiful children - our first miracles through adoption. As I reflect on the bounty of life's blessings, these beautiful family relationships are at the top of my gratitude list. These relationships motivate me more than anything to live as long as I can, just because I enjoy these associations so much. However, since we are eventually all subject to pass from this life (hopefully later rather than earlier), I cling to my understanding that this fairytale princess and her Prince Charming (and all the family realm) can still enjoy a "happily E V V V V V - ER after"...in the great "ever after".
Something I will be grateful for, (here it comes again, folks...) "For - E V V V V V - ER!"
Tuesday, February 07, 2006
How is it going, many are asking?
Well, you know - I'm sure I felt better when I DIDN'T have a deadly cancer racing through my brain. But, hey - for someone who has had neurosurgery followed by three weeks of chemo and radiation, this seems to be a lot easier than I thought it would be.
Side effects update:
Fatigue: I need more sleep than I get, so I'm a little tired, but I usually have plenty of energy.
Hair loss: A little, but still hideable. Got my wig ready, but so far I've done without.
Neuro stuff: Doing great. Sometimes I can't find my keys, but what else is new?
Etc.: I'm doing fine. Some sunburn-type irritation on my scalp and right ear.
I mean, hey - I've been clog dancing any chance I can get! I've been blogging any chance I can get! I'm a clogging, blogging cancer patient, with a big smile on my face when I see my family and friends. (Okay, yeah, sometimes I'm boo-hooing in the bedroom on my own, but not nearly as often as you would think...) And I still have my singing voice. That was really important to me. And I can still work (that's important to me AND my clients) and do other stuff that makes my life a busy but fun experience. I just can't DRIVE! (I probably could, but I'm under doctor's orders not to.)
Okay, let me take a moment to knock all the wood I can find around me (even though I'm not all that superstitious)! So far, so good.
Since glioblastoma is so aggressive and so prone to recurrence, my chances of hanging around longer are greater if I'm not being torn apart by the treatments. Sometimes people succomb to the constant barrage of treatment, more so than the cancer itself. So if I can stay out of that pool of people, maybe that will be the beginning of miracles.
Most of all, I feel like I am being carried on the shoulders of so many who are praying for me. Those prayers sustain me, and I am hopeful that they will prolong my life. Prayer is an act of faith, and faith precedes the miracle. So thank you - all of you - who have remembered me in your prayers. It's helping - a lot - so keep them coming!
Monday, February 06, 2006
Once in a while I come across an article about some possible new treatment for brain tumors. While hopeful, the article often peppers the story with background information about the quick devastation that is caused by glioblastoma multiforme, and how hard it is to treat. One recent article that I read commented about how so many patients have their fatal recurrence within 9 months. It makes my stomach turn. I've seen the statistics that show such a tiny minority of patients living more than two years, and the five year survival rate at virtually zero. Over and over again. It gets pretty gloomy, so I try not to focus too much on it.
Instead, I try to focus on the favorable conditions that I have mentioned in an earlier post. My age. The location of the tumor. The easy recovery from neurosurgery. The complete resection of the tumor and the placement of the Gliadel wafer. Added to that, I think, is my ability to tolerate the treatments as well as I have so far. And, of course, the many, many prayers. I have been told that I have a lot of the characteristics of "the rare ones" who beat their prognosis (even for a little while).
I was chatting on the phone with my brother (the one who is the dermatology resident, and who has all the makings of a superior physician), and we were talking about how the establishment of a prognosis can be so flawed, because there are so many variables at play. For example, I have a grandfather who died from melanoma cancer. He was originally given six months to live, and he survived seven years. (I hope I have A LOT of his genes!) Of course, what killed him is when the cancer finally spread to his...(shudder)...brain. But hey - seven years! From a six-month prognosis!
I commented to my brother that, yes, well, the whole prognosis thing is flawed, but the doctors are basically working off of historical data and experience. My brother gave the most profound reply:
"Yes, but they have NEVER seen a glioblastoma multiforme in a Krista Oakes before."
This was a really great point. No one has a DNA structure exactly like mine. No one has a health profile exactly like mine. No one has every variable that I bring to this situation. No one has responded to surgery and treatments exactly the same way that I have. No one has taken all of the medications that I have taken throughout my life. No one has a lifestyle exactly like mine (food, exercise, sleep, stress management, etc.). No one has the same total drug regimen (other than maybe the chemotherapy drugs). I could go on and on. Everyone is different. I'm a cancerous little snowflake!
In addition, and possibly more importantly, no one has my unique destiny. I have an individual spirit, and was put on this earth for a specific purpose. We all are that way. I have a time to be born, and a time to die. I have a specific work to do here. No one will ever be my children's mother the way that I am. No one will be my husband's wife the way that I am (even if I die and he remarries). No one will ever be my parents' daughter; my brothers' sister, etc., in the way that I am. No one has my mix of talents and abilities. (Not that mine are superior in any way - just that they are unique to me.) No one talks or writes about things exactly the way I do. (Again, not that my way is better. It's just me.) We are all snowflakes of sorts. Individual, special creations. Sometimes each one of us is uniquely able to touch someone's life as we cross paths. We each have our own destiny and purpose and plan.
There is the doctor's time - the statistically derived time - and then there is the Lord's time. The former is a reasonable but flawed guess, based on history compiled from a group of people who are all different. The latter is based on an intimate knowledge of who I am and what I should be doing here to achieve my highest potential.
Meanwhile, I remind myself that NO ONE gets a guarantee of 14 more days, much less 14 months. I might not even die from this cancer. A Mack truck might beat it to the punch! Each day of our lives is a gift that we should receive with gratitude.
Just the same, I am preparing myself JUST IN CASE that 12-14 month number ends up being accurate for me. It is a gift to be able to prepare some things that are important to me ("If ye are prepared ye shall not fear") and to show my gratitude for life by making as much use of it while I can. But I am also holding out hope that our prayers for healing and an extension of life will be answered with a miracle. And meanwhile, I am just so thankful for each day. I am thankful each time I put on my shoes and dance with my husband. Each time I sing. Each time I hug my family members. Each time I do a puzzle with my son. Each time I think about something to add to my blog. And so on...
Sunday, February 05, 2006
Anyway, one of the topics we discussed as a support group was "what I got instead". When we prayed for a child and one didn't come right away, we got other blessings instead. It was fun to list the other ways our circumstances blessed us. (For example, we both had opportunities to develop our careers and talents, we had more time to volunteer for meaningful things, we had more time to enjoy married life together, etc., etc., etc.) We actually made a really long list. But I was thinking about that today, and I realized that I should be starting my own list. So here goes...
I don't have a cancer-free body (at least for now - still hoping and praying for a miracle). But for now, here's what I get instead:
- Lots of reasons for people to tell me how much they love me.
- Lots of opportunities for me to tell people how much I love them.
- A chance to really focus on the things I want to do with my life.
- More meaningful prayer.
- A greater spiritual awakening.
- A hunger for the scriptures, and for the companionship of the Holy Ghost.
- A deeper-than-ever appreciation for the Atonement of Jesus Christ.
- Personal refinement.
- Motivation to take better care of myself, including how I eat, sleep, and exercise.
- Moments to reflect upon the great life that I have had.
- More meaningful hugs and more memorable moments with my children and my husband.
- Nice one-on-one time with my dad each weekday as we drive to radiation and then out to lunch.
- An outpouring of angels from my church, who have helped with childcare, meals, cleaning, driving, and anything else I need - plus they give me such an emotional boost.
- Bonding moments with a high school friend, who is also battling cancer.
- More use of each day. I don't like to waste time anymore.
- Deep enjoyment of things I used to take for granted.
- A special thrill when I do things that mean a lot to me, like sing or dance or work...because I still CAN!
- Yummy peanut butter and graham crackers at the cancer center!
- A good excuse not to eat after dinner (chemo drugs requiring an empty stomach), which pays off at the scale!
- A strong witness of the love of my Heavenly Father.
- A "goody bag" from the cancer center social worker, including a neck pillow, books, resources galore, and even a wig.
- Anticipation of exciting trips with my family to Disneyworld and Manhattan, where we will make all kinds of fun memories.
- Visits from family members and friends, who make my day, because I love big gatherings at my house.
- Cheaper auto costs, including insurance, because I can't drive! I just get to be Miss Daisy
- A good excuse to say "no" to anything I don't want to do.
- Hopefully a good card to play when I audition for a Messiah solo this spring (I always like to be one of the soloists during the annual Easter Sunday performance)
- Reasons to put on my clogging shoes and dance (and a good card to play when I want my husband to dance with me)
- Money and a shopping spree from the hair fairy!
...and the list could go on and on and on. It would be really nice to lose the cancer, because I want more years to enjoy the great life that I have been given, and I want to put it to good use. I will continue to pray my guts out for that outcome, and I appreciate the many who are adding their voices and their faith to this cause. Miracles can always happen, subject to our own faith and the Lord's good will. I don't know what the future holds for me, but I know that it will always be rich with miracles and blessings of the Lord's design.
Saturday, February 04, 2006
Carlos is my hairstylist. He is awesome. He helped me recover from an unfortunate attempt at a Meg Ryan style (which was the swan song of my previous stylist). He has styled for magazine covers. He was on Oprah. His station is lined with trophies. He is really talented, and - most importantly - he reads my mind. He can tell what I am envisioning on top of my head, and he makes it come out that way. His services don't come cheap, but he is worth every dime. Before my brain surgery, visiting Carlos for a cut and highlight was a regular pilgrimage every couple of months. In fact, it was one of the first thoughts I had as soon as I knew I had a tumor that required surgery. "But I have a highlight and cut appointment tomorrow!" Carlos was the first miracle worker that I needed where my head was concerned.
Now I need a different miracle worker for my head. THE Miracle Worker. For my brain, not my hair. I pray for that miracle every day.
Speaking of hair, and as I posted earlier in the week I am having some early signs of mange. And by the way, the hair fairy did make an appearance. I collected the lost hair into a small plastic bag and put it under my pillow. The next morning, though, it was still there. I showed it to my husband (who was getting ready for work) and made the comment that the hair fairy must obviously require more of a sacrifice. My husband looked sheepish at first. But shortly thereafter he came back to me with a $20 bill. He said, "I just talked to the hair fairy. He said that this is for you. But you can't spend it on anything practical; you have to save it for tonight, because I am taking you shopping." YIPEEE! My husband knows that I am rabid for shopping, especially now that I am grounded at home with no ability to drive. So the hair fairy scored some big points.
I also showed my mange to the social worker at the cancer center (where I go for radiation). She immediately let me take my pick of the really nice wigs that line the shelves in her office. I found one that happened to be my own color, and it even looked like a style that I've worn before (NOT the Meg Ryan style - something better). It looked like it could be a Carlos creation. It was awesome. And no roots to tell the world that it's time for my highlights to be retouched! So far, I can hide my mange with my own hair. But if it gets worse, I'm prepared.
Since I'm still relying on my own hair, I thought about taking a few inches off, just to give it a little more spring. I thought about going to see Carlos. But last night we took my son to get a haircut at one of those walk-in kind of places. They did an awesome job on my little guy's hair. The stylist read my mind. I decided to give him a try on my own head. He gave me the right trim and was very careful with the tender spots on my head. It was my first departure from Carlos, and it was just fine for now.
I am looking forward to the day when I will hopefully need Carlos to work his magic on me. Hair can grow back - even hair that is lost during cancer treatments. Maybe someday I'll get less creeped out over whether hair dye causes brain tumors, and I'll get brave enough to get my roots done. I may have to make do with "wigging out" and cheap haircuts for the meantime. But I'm hoping and praying for a miracle in my brain. And if it happens, I will be making my regular pilgrimages again to the "miracle worker"of style!
Until then, "Adios, Carlos...muchas gracias!"
Jewels are mentioned in the scriptures, including a passage in Malachi: “And they shall be mine, saith the Lord of hosts, in that day when I make up my jewels; and I will spare them, as a man spareth his own son that serveth him.” (Malachi 3:17)
In my jewelry box are three especially beloved pieces. One is the diamond ring that my husband gave me when we were engaged (if you read an earlier post, yes, this is the one that I had lost but thankfully found). Another is a pearl necklace that my husband gave me for Christmas a few years ago. Another is a sterling silver necklace with a pendant in the sculpted shape of two parents and a child, which was a gift from our son’s birth mother.
Diamonds begin as simple carbon material. But once that carbon is subjected to extreme pressure and heat over a long period of time, it is transformed into a diamond of significant value. The pressure, heat, and time are necessary components of the transformation process. Otherwise the carbon just remains a worthless piece of carbon. I guess it's good that I don't have to be a content but worthless piece of carbon lying around all my life. Diamonds are a girl's best friend! Diamonds are forever! If I can endure heat and pressure with patience, maybe I can become something brilliant someday.
A pearl begins as a tiny grain of sand (or some other irritant) trapped in an oyster. Once again, a jewel emerges from the process of endurance. If the oyster cannot or will not expel the irritant, it instead makes something beautiful out of the experience.
I have personally made it a matter of prayerful consideration about the "uses" I can (and should) make of my present adversity. Beautiful things have already started to emerge for me. Generous outpourings of love from family and friends, and opportunties to express my love and gratitude back to them. Great opportunities to reflect upon how blessed my life has always been. Sacred experiences as I have spent more time in scripture study and prayer.
Silver is refined in a fiery furnace. There's a story that I read in one of those "please pass along to everyone you know" inspirational emails that I received long ago, about some Bible study ladies who met and discussed the phrase: "And He shall sit as a refiner and purifier of silver." (Malachi 3:3) One lady visited a silversmith and asked him to tell her about the process of refining silver. After he had fully described it to her, she asked, "But, sir, do you sit while the work of refining is going on?" "Oh, yes, madam." replied the silversmith. "I must sit with my eye steadily fixed on the furnace, for if the time necessary for refining be exceeded in the slightest degree, the silver will be injured." Before she left, the lady asked one final question, " When do you know the process is complete? "Why that is quite simple," replied the silversmith. "When I can see my own image in the silver, the refining process is finished."
Lately, I have come to appreciate the refining opportunities in my present situation. I guess anytime adversity is at the point when you are staring down the barrel of mortality, it can be a make-or-break time. I choose "make". Cancer is a fiery form of adversity. When I consider the magnitude of the potential of glioblastoma (not only death, but a devastating and heartbreaking decline into that death), it gets really tough. And yet in this furnace of affliction I am noticing how small imperfections are starting to break loose. Opportunities to make myself more of what I can and should be. And when I think about the silversmith watching carefully while the silver is refining in the furnace, I think of my own Heavenly Father watching over me to make sure I am not "damaged" in this process (regardless of whether my body survives or not). I remember the Biblical story of Shadrach, Meshack, and Abed-nego, who were thrown into a furnace, yet survived. Those who witnessed the experience noted that a fourth person was in the furnace with them - someone who looked like the Son of God. He was there to help them in their hour of greatest affliction. Another story, in the Book of Mormon, tells of righteous people who were persecuted and burned to death for not denying their beliefs. In their case, they were not delivered out of the torturing, deadly fire, but they were surely "saved" in a higher way. They were still being watched over.
Diamonds, pearls, and silver. Treasured pieces in my jewelry box. Symbols of endurance. Reminders that the Lord will “make up his jewels”. He will watch carefully over the processes that are necessary to help me realize my greatest potential. And I am just really, really hoping that I can someday emerge from this with the ability to reflect back His image in my countenance.