The following is a repost of an entry I made four years ago at the end of 2009. This was during my breast cancer treatments. It's interesting to me to note the timing and similarities from then. That year, it was Eric who was our missionary that we spoke to on Christmas Day. This year, it was Daniel, with whom we got to Skype with all the way from Uruguay. I learned so much from this experience that I describe below. And, honestly, it is what has given me strength during this current cancer episode.
When I use my trials to learn and grow, I can look back on them without a bitter taste in my mouth, but with gratitude that I was given the grace, through the atonement of our Savior, to press forward with faith.
December 31, 2009
I realized that I need to seize the moment to make my last entry for 2009. A new decade begins tomorrow that will undoubtedly bring with it its blessings and its challenges. I just wanted to leave with those that read the thoughts that have been swirling around in my head for the last week and a half.
Christmas was wonderful. Physically, it was the most challenging time of my entire life. Really. The side effects of this new drug were quite intense. They are much more severe than with the first round of chemo drugs. As for my spirit, I was happy and delighted to be surrounded by my sweet family. It was wonderful to speak to Eric, our full time missionary, on the telephone.
Starting on the Wednesday after my treatment, I had much worse nausea than I had yet experienced with chemotherapy. In addition to that, I experienced severe pain in all my bones and joints. Deep down to the bone marrow pain. This lasted for Wednesday, Thursday and Friday (Christmas Day). The pain had lessened a bit for Saturday, and I was grateful, since I had to finish up the two wedding cakes for delivery later on Saturday.
On Sunday afternoon, I began to have severe chest pains with accelerated heart rate, pounding in my chest and shortness of breath. The best way to describe what I was experiencing is like labor contractions of my heart. I was always at a constant moderate pain level (5 on the 1 to 10 scale) with surges of increasing pain, lasting different lengths of time that brought the pain level to 8 or 9. By 9 o'clock that evening, my daughter, Elizabeth insisted I call the oncologist "on call" doctor. She just suggested I take Percocet to get through the night and to see my doctor the next day. The pain kept me up in waves throughout the night. The pain was often unbearable.
I called the cancer center and was only able to leave a message with the triage nurse. Three hours later, Nurse Jan called to say "come in RIGHT NOW".
When I arrived they checked my vitals and gave me orders to take to Cary Wake Hospital for a CT Scan to check for pulmonary embolism. They gave me a preventative shot of a blood thinner and a very small dose of Morphine for the pain.
I really don't want to take the time to do a play by play of the whole ordeal, but will say that after the CT scan came back negative for a blood clot, it was necessary to have an EKG done, which for some reason, could only be done through the emergency room. Daniel had driven me to the doctor, and was my constant companion through everything. We spent about 6 hours in waiting rooms in the ER in between two EKG's and blood work before I was in an ER room. I was admitted to the hospital overnight for observation to make sure that my blood enzymes did not show any heart damage. The pains had started to subside by the evening. Catherine switched places with Daniel and spent the night with me in my room.
In the morning, I had an echo-cardiogram (ultra sound of my heart) to check further for damage. It took 5 hours to get the results. No damage. (In other words, I did NOT have a heart attack). I left the hospital around 2:00 p.m.
Waiting in the E.R.
Dr. Singh said it is likely just a very severe and unusual side effect of the Taxol. Great. But, he had to rule out the other things to be sure.
I have been very weak and nauseous this whole week. It's just the way it is. But, my spirits are good.
So, back to my thoughts....
Every year, during this season, you can take your pick of any number of incarnations of the classic Dickens tale of "A Christmas Carol". I have seen portions of several versions this year. Just this afternoon I watched one I had never seen before, a more recent musical version starring Kelsey Grammer (Frasier) as Ebeneezer Scrooge.
As an aside, for many, many years, Doug has taken amusing offense to anyone remarking in a disparaging way to anyone who lacks Christmas cheer as a "Scrooge". He says that everyone should be a Scrooge, because he was great and generous man. You see, he choses to see Mr. Ebeneezer as he became in the end, rather than who he was during most of the tale. It's been a good spirited heated topic between he and I.
Today, while watching this new version, I was struck with the message of this tale. It is simply, do not let anything get in your way of living your life and loving one another. Whether it is too much emphasis on material things, whether you are in abundance or struggling; whether it is a grudge in your heart against family or friend; whether it is unexpected adversity or illness or any of another hundred things on the list. There is nothing more important than seizing the opportunity to love and serve others, and for that matter, to love and serve yourself, if you make sure that your service to yourself improves your ability to serve others. I think of it as developing Christ-like attributes.
I cannot tell you how many times, during this last week, with the severe bone and muscle aches and the intense chest pains in my heart, that I thought of our Savior and Redeemer. and knew that what I was experiencing was nothing compared to what he went through for all mankind. And, what's more, is that I see it as a gift to have been given an opportunity to think and feel more deeply upon his sacrifice as it relates specifically to me!
2009 was a fantastic year for me. There were so many great blessings offered to me and my family. We received guidance on the timing to purchase a new home, and where to buy it. I have been given the blessing of learning about how many people really care about me. It has been wonderfully overwhelming. The service that has been offered to me and my family in so many acts of service and kindness are innumerable.
So, if I can offer a bit of advice based on Doug's view of Ebeneezer Scrooge, let us try to see people not as they are now, but as they will become. Most people we encounter really are trying to become better people. Love each other a little more purer. It's kind of like the way our Heavenly Father can see our eternal potential. We'll all be better off if we can be more gentle on ourselves and each other.
So, in the words of the immortalized Tiny Tim, "God Bless Us, Everyone". For all of us deserve God's blessings in this coming year.
It has taken me longer to sit and write again. This is more due to how difficult it is for me to actually type, as the neuropathy in my hands progresses further and more intensely after each subsequent treatment. It is also because I find that it is necessary to record a really detailed series of events that is just so long and involved. I had to be emotionally ready to tell the story again. :)
It's a REALLY lengthy story to tell.
Some background for understanding:
I have no idea from day to day exactly how bad I may feel. I generally have learned that each week is worse than the one previous, but that usually Mondays and Wednesdays weren't as terrible as all the other days of the week. Monday was "better" because it was the day furthest away from the previous treatment. Wednesdays were "better" because the IV pre-meds they give before my treatments to prevent allergic reactions and side effects of the chemo agents were still in my blood stream. Thursdays are THE WORST. I am hit heavy with everything sometime in the middle of the night, and when I wake up I feel like my body weighs 1400 pounds. I cannot get out of bed. I am so weak and shaky, sick to my stomach, often a bad headache and so very, very tired.
I also realize that as you may read on Facebook or here on my blog about me making wedding cakes, that it gives the impression that I am doing better than I am. Don't be fooled. I have an incredible support system that helps me on weeks that I am making cakes for my friends children who are getting married. I work a little and rest A LOT. I always ask Heavenly Father if it is prudent for me to make a cake. I know that I might have to work through the tired or some pain and that I must ask for help and then allow people to help me. But, what was the point of all the years of developing my skills for money, and not be able to make the cakes for the people I love? It may not be easy, but it brings me great joy.
And now for the story…yes, all this detail is relevant
Two and a half weeks ago I was working on the wedding cake for my BFF Patti's daughter, Amy. This was something I really wanted to do, and after my surgery in August, I was determined that nothing or no one could stop me from this blissful task. I knew that it was possible that I would be in the thick of side effects, but when I asked, Heavenly Father told me that I could do it. But, I'd have to ask for help; I couldn't do it alone.
I had great plans for a three cake presentation, that included one medium size wedding cake, and two smaller tiered cakes, all in a cohesive
Steam Punk theme. (You'll have to look it up). When my treatment plan was finalized, we realized it would be a "week 1" of a cycle. Which means that I would have both chemo agents that week, and that based on the months before, I knew it would be a more difficult week due to increased side effects. Sadly, I had to tell Amy that I knew that I would not have the strength to do the three cake display, but to choose the one that was her favorite. I also promised that since there would only be one cake, it would be my very best work.
Douglas baked almost all of the cake. He's a very good baker, having worked with me a whole year in 2007 when he was not employed. You will never be able to tell if he or I baked the cake. True story.
I also had the assistance of dear Kimberly. You'll have to go back and read from my breast cancer days why I esteem her as highly as I do. She has offered more hours of Christlike service to me than any other person in my entire life. She saved the business when my breast cancer diagnosis came 4 years ago. True story.
When my cake business was at it's peak, Kim worked for me and along with some mad skills she brought with her, she learned "my ways" and I learned from her too. We were a great team.
Just one more piece of background information: I make my own fondant. It is delicious and is a dream to work with. It's not my recipe, but I am grateful to the gal who shared it so that I can have it too. Good fondant is very expensive, and when my business was in its peak, I purchased a Swiss fondant from an import company. But, now that I only make a few cakes, mostly for friends, I just couldn't support the purchase price and shipping. This is relevant to the story, because I realized that I would not have the strength to make the fondant for Amy's wedding cake. So, I purchased a brand that I used in the early years, that I thought worked great until I learned about the Swiss stuff.
Everything that I touched was an Epic Fail
Since the top three tiers of Amy's cake were actually styrofoam cake dummies, I decided that I could cover them in fondant a week ahead since there was no cake to spoil. Good idea. I am so efficient. (hmm.)
On Monday, I knew I had to get as much done as possible to prepare for when Kim would come on Wednesday to level, fill and crumb coat all the kitchen cakes (200 servings). So, I prepared all the different fillings and made the buttercream, so she could just start doing the work on Wednesday.
I, on the other hand, was not so successful.
So, I had a little energy after my treatment on Tuesday. So, that evening, I decided to drape the fondant on the bottom 12" tier that was actual cake. But, it was like I had never worked with fondant in my life. I'm like "This is what I DO! I am good at this! Why is the fondant cracking and tearing as it hits the cake? This isn't just, "oh Sally is a perfectionist and it is really fine". Doug heard my cries and my whining and my crying, (yes more crying; there was A LOT of UGLY crying) and asked if there was anything he could do to help me. I said, "come in here and be honest and tell me that I really do have to re-do this tier." Ordinarily my champion, he is always the eye of the average person and tell me it's really not as bad as I think it is. But when he saw the cake, he asked, "Is there a way to fill in all those cracks?" Fail!
So, I try to carefully pull the fondant off the 12" round cake tier. Oh, I forgot to tell you, it was Red Velvet cake. So, that means I have to very cautiously scrape off the buttercream from the fondant so as to not leave any red specs behind, thus turning the fondant pink when re-kneading it to use again. ARGGGGGGHHHHH!!!!!
Remember the cake dummies? By Tuesday night, that fondant just kept moving on the cake dummies. Catherine asked me if they were supposed to look like the bark of a tree. Uh, no. Fail!
Clearly this fondant I bought was not working. But there was no time to order the good stuff. So, on Tuesday evening, I was resolved that I would have to make fondant on Wednesday morning. I got up on Wednesday morning and started preparing all the ingredients to make 3 batches (about 15 pounds) of fondant.
The phone rang at 9:30 a.m. It was Patti, who was calling to check in on me because I didn't respond to her text from the night before. This is not usual for me. But, I was in the middle of the weeping and crying and I just couldn't tell her that I was failing at making her daughter's cake. I told her what happened. She helped me feel better and would pray for me. "Patti prayers" are incredibly effective. Always.
I went into the kitchen and started making the first batch, and a very sweet feeling came over me, and then the voice of the spirit whispered into my heart and mind, "You have to taste the bitter, to prize the sweet." And I thought, OK, I get it. Even in the midst of this whole BITTER that I am going through with my health, I can still learn again this true principle taught by our First Parents. This is the story of mortality. I decided I would shed no more tears over this cake. My focus was on the joy of making the perfect cake for Amy and Jeff.
With the help of Evelyn Wing, all the fondant was made that morning. Eveyln took me to my afternoon appointment. When I returned home, I was not strong enough to do anymore work on the cake that day. It wiped me out. I slept the rest of the day.
On Thursday, I soaked all that other fondant off the cake dummies and proceeded to try again with my freshly made fondant. And…..fail. It had no elasticity. It cracked and tore. What was wrong? I make this all the time. What was different?
That night, I email Kim to see if she could help me on Friday. What I really wrote was "Help me Kim! You're my only hope!" She had already set aside time to help me if I needed it.
She arrived at 10 a.m. on Friday and we start trouble shooting the homemade fondant. We tried adding more confectioners sugar. We added more shortening and it just got worse. Together we spent about 4 hours trying different things and the fondant just got worse. If you can, imagine an 8" styrofoam cake dummy. I roll out the fondant like you would roll a large piece of pie dough for a crust. I go to drape it over the dummy, and the top edges all crack immediately and like a giant hole punch the fondant on the dummy stays a circle on the top and the sides drop to the counter. Fail.
No tears, as promised, but I am feeling seriously concerned about my skills.
We can't move forward on any of the other design elements until we have a fondant "canvas" to work on. Last resort. Nasty Wilton Fondant. The worst tasting fondant, EVER! I send Kim, my son Benjamin and Catherine to Michael's Craft store with 50% off coupons to purchase what is truly my last hope.
It's 2:30 p.m. and Kim has to leave to pick up her girls deliver a wedding cake she has made. We can't believe that the wedding is the next evening and we don't even have the fondant on the cake. Kindly, she tells me she will come back and we will work all night if we have to until the cake is done and done well.
While Kim is gone. I start using the Wilton fondant to cover the cake dummies first. It went on splendidly. Each tier in turn. Then I covered the "real" cake. Very good. Not perfect, but still quite acceptable. I could hide the little blemishes with the decorative items that go on the cake. I started with the other design elements. And everything went on easily, and I feel more confidence.
And there it was. It turned out just like the design was supposed to. And it was really good work. And I dare say, I felt a sweeter sweet and joy than if everything had gone like I expected it to. I really had to work for this one. And, I was able to feel incredible joy even after so much bitter. True story.
The next week (a shorter story)
I have one of those double oven gas ranges. Small top oven, larger bottom oven. Only 2 1/2 years old. The top oven stopped igniting on the Sunday before Thanksgiving. The bottom oven stopped igniting the morning before Thanksgiving. SERIOUSLY?!
Do I need to go any further?
Oh, I'll tell you that Doug found a repairman to come out, who was so busy that day that he got here around 7:30 p.m. Basically, I wore out the ignitors. I use my oven 3-4 times the average user. That means the ignitors were essentially 8-10 years old. $516 later, my ovens work. Much gratitude for my friend and neighbor, Shalyse, who let me bake my pies in her oven on Wednesday afternoon.
Thursday was Thanksgiving. It was "in-law" year, so my married kids went to their in-laws for dinner. But, Michael's wife's family didn't have anywhere to go, so the came with her mom, sister, and grandmother. I had assigned all the side dishes out, so that I wouldn't have anything but the turkey to deal with. It ended up being a TERRIBLE side effect day for me. It was a very hard day for me physically. But, in my head, I was happy.
OK, Sally, what's the point?
I spent a lot of time praying during these last weeks while I was vexed by my trials. I RE-HEALLY wanted to know what the purpose of all this bitterness was. I've spent hours in meditation trying to understand. Well...
It wasn't about my loss of skills.
It wasn't about bad timing of ovens breaking.
The Lord taught me that sometimes no matter how hard you try at something, it doesn't always work. I'm pretty used to be being successful at the things I try when I work really hard. I needed to be humbled. He basically told me, "You think this was YOU all these years. You think that it was all your hard work and intellect, when I was there all along, right beside you. You wouldn't have been successful if I hadn't walked beside you all the way!"
The Lord taught me that I am NOT in control. He is. And regarding this diagnosis and prognosis - as much as I have said and written the words "It's all in the Lord's hands". I was still holding on as if somehow I had still a little bit of power in all this.
What I am saying is that I have been trying to control my ability to persevere through this more aggressive treatment plan. I have been minimizing the severity of the neuropathy in my hands and feet, because I have been afraid that they will stop this course of treatment. (This is a reason they would stop it.) I have convinced myself that if I don't finish this series that I will have lost my best chance at fighting this disease and it's history of recurrence. But, I don't really know that at all.
If I don't speak up, some or all of this nerve damage to my hands and feet could be permanent.
My hands that have spent since childhood playing the piano in service to the Lord and teaching hundreds of children and for the shear enjoyment of the music for me.
My hands that seem to make people really happy when they eat the cake that I bake.
My hands that hold my grandchildren.
My hands that hold the hand of the love of my life.
Letting go
Each week is more difficult than the one before, in terms of the intensity of the side effects. Every week my white counts are just barely on the borderline to go ahead and receive treatment. And boy do I feel the "low-ness"! The fatigue from being anemic is overwhelming. My hands are now almost completely numb.
Next week I start Cycle 5 - Week 1. That means that I am 2/3rds through with this particular treatment protocol. It also means that I meet with Dr. Lee on Tuesday. I understand that I have to admit that it is time to have a serious talk about whether we continue with the aggressive weekly treatment plan, or finish up the course with the traditional protocol. Or, something else entirely.
If you will, I ask for prayers on behalf of Dr. Lee and Douglas and myself to make the best decision about my care.
Wedding Cake Photos
courtesy of Emanuelle Photography - Mani Reay Maxwell
Today was Cycle 3 - Day 15 or the last treatment of Cycle three. It was the first time ever that I got out of there in only four hours.
But, today my blood work had a small glitch. There was a component of my white cell count (Absolute Neutrophils) that were seriously low. The normal "I'm not going through chemotherapy" low is 2.2. The "oh, we'll still give you chemo" low is 1.0. Today mine were 0.8. This means that my body right now will have a seriously difficult time fighting off infections.
But, since my red blood cell counts had improved from the transfusion I had last week, Dr. Lee decided to proceed with today's treatment. However, if they are still really low or lower next week, I will have to go to the Cancer Center the day after each treatment for a shot that is supposed to boost my white blood counts. Ugh! Another appointment!
I know this shot, from breast cancer. It's a long needle with a much higher gauge and there is a lot of solution, and it burns like crazy! It also produces side effects of its own. But, the nurse said they came up with a version of the shot that doesn't seem have as intense of the bone pain and headaches I had before (for 60% of the patients) because it doesn't stay in your system as long. My fingers are crossed. You know how my body always fights against the odds. :)
On Monday, November 18th, I will have completed the first half of my treatments. 9 weeks down, 9 more to go. It's a known fact, the second 9 weeks is where the women in the Japanese study started dropping out of the protocol because of the very things my body is starting to go through now. Between the issues with my blood work and the increasing intensity of the side effects...
1. fatigue that interferes with the activities of daily living (ADL's)
2. Nausea and lack of appetite.
3. Sores in my mouth and throat
4. Increasing Neuropathy in my hands and feet. (Always very irritating and sometimes painful)
5. Constant nose bleeds through the night, and sometimes during the day.
...It will prove to become more and debilitating. I don't want to ever go in and have Dr. Lee say the four words I dread the most at this time - "We have to stop."
I know that this treatment plan is MY BEST CHANCE! I have to complete all 18 treatments without skipping a single week. This is why my daily prayer is that my body will be able to withstand the treatment so that I can complete the series. This is the "baby step" (as it were) to the more grand request for a complete and total remission.
In short, I want to be cured. Yes. That is my daily petition to my Father in Heaven. But, I also acknowledge that I know it is in His hands. His merciful hands. And lately, he is helping me understand that He will most assuredly be merciful and that only He knows what that really means, even more than I do.
All these thoughts of mercy make me think about my own ability to be merciful. Am I a merciful person? Do I take that road when I feel I have been wrongly treated? And, if I haven't been merciful to others, have I repented of this unkindness? This action of showing, or more accurately being merciful.
Note: (I reference a talk given by Elder Lynn G. Robbins. I call it the "To Be Rather than to Do talk" - a life changing kind of talk. It is actually titled "What Manner of Men Ought Ye to Be?" I totally encourage you to click the link and take the 10 minutes to watch the talk. He talks much in relationship to raising children, but it most certainly can be extrapolated to relationships of all kinds. Trust me! No matter what religion you are are aren't, you will be uplifted)
When the Savior gave began to teach what we call the Sermon on the Mount, he began which by teaching 10 statements which we collectively call The Beatitudes, he gave us the precise and simple rules for returning back to His heavenly kingdom. In every scripture he either uses the word "are" or "be". Both are from the *infinitve verb to be. It is beyond just an action word! It is who you are, and therefore, the action is a natural consequence of who you are. He didn't. Have to study much to come up with these ten instructions. Because they describe him perfectly. They are Christlike attributes. And this what he meant when he entreated us to "Follow me". BE LIKE ME!
So, regarding mercy. I am trying to be more merciful. I think it encompasses a total attitude of forgiveness but without the lecture first. It requires us to be patient and forgiving to others anytime they might show their faults. I think it means that I have to stop being a Right Fighter. This is an attribute I began developing in my family when I was quite a young girl. And unfortunately, because I was an example of a right fighter as I raised my children, I taught some of them to behave the exact same way.
I now have to let it go (a to do) so that I can BE a merciful person. No grudges allowed. Let it go. Free myself/yourself from the burden and sin of being the person who judges them - NO MATTER HOW MUCH THEY MAY HAVE HURT YOU!
Blessed are the merciful: for they shall obtain mercy.
I want to be that person. Because the blessing for being merciful that The Lord and Savior Jesus Christ tells us is that we will obtain mercy. And who of us doesn't need that! And only this week did I realize that it doesn't qualify when or who will be merciful to us. I only thought it meant that it referred to the commandment that we had to forgive (part of being merciful) others or God would not forgive us of our own sins (thus showing His mercy). That it was only applicable to the Lord's gift of forgiveness to us when we sinned against His commandments.
But, now, I am really thinking that it also means that as we become more merciful to everyone on earth, that we will find that others will also start showing and being merciful to us for our own shortcomings and offenses, when we slip and fail to be as Christlike as we should be.
Who of us would not benefit from that kind of "karma"? And really isn't karma just another religion's word for what we Christians call "the golden rule". And I just read last week in the Book of Mormon this passage, which teaches us the same thing. This is Alma teaching his son Corianton, who had been grossly disobedient to God's commandments.
14 Therefore, my son, see that you are merciful unto your brethren; deal justly, judge righteously, and do good continually; and if ye do all these things then shall ye receive your reward; yea, ye shall have mercy restored unto you again; ye shall have justice restored unto you again; ye shall have a righteous judgment restored unto you again; and ye shall have good rewarded unto you again.
15 For that which ye do send out shall return unto you again, and be restored; therefore, the word restoration more fully condemneth the sinner, and justifieth him not at all.
Alma 41:14-15
My dear friends, I hope you understand that I use these writings to help me and appreciate that you are coming along for the ride. I think I mentioned in my last entry that I feel the desire and even the directive to use this "unusual opportunity" to learn more about Heavnely Father's ways. And, to learn more about myself, and try, try so very hard to learn to become more like the Supreme Exemplar, who is The Lord, Jesus Christ. Otherwise, I will have a wasted opportunity. Any of you who have had anything happen to you that requires you to face your own mortality might possibly understand. Others, who are far ahead of me have already made the decision to more fully understand God's ways without this kind of stimulus. I guess I need this situation to get me to become the person that I can and should be.
Regardless of the outcome.
Thank you for your love and prayers and good thoughts and your incredible spirits. I am sustained daily, and often hourly by them. I feel them. It is humbling to know that my name is uttered so often by the lips of family and friends and your children. Prayers are said on the behalf of me and my family all over the world.
"Pray. He is there. Speak. He is listening.
You are His child, His love now surrounds you."
From the children's song "A Child's Prayer" LDS Children's Songbook
Regardless your age...we are All His children. It is overwhelming this power; the Power *IS your love.
*is - also a word derived from the infinitive "to be" :)
I am
You are
He, she is
We, They are
OK, so it's an irregular verb. ;)
Let's first get past any judgements that might be hurled my way for loving the movie Moulin Rouge. I saw it with my best friend Patti, and we were blown away by how they used contemporary music to tell the story, and how they did musical re-dux to make the songs relevant to the story. And ok, I'll admit it, having Ewan McGregor as the male lead (and great eye candy) didn't hurt. But, lately, I keep thinking of the sentence that is really at the core of the movie:
The greatest thing you'll ever learn
Is just to Love
And be Loved in return.
Read the words. No! Embrace the words. Let them tumble in your mind and heart as you find multiple applications to your life. To the people you know and love. To the people you should know and love. To yourself. To Heavenly Father. And the Savior.
So right now, I am going to expose my deepest thoughts, and tell you one of the secret challenges that has vexed me since I was a young girl. I have always had, and to a great extent, even now, a fear of the afterlife. It's not really a fear of dying, per se, but rather a fear of what is unknown. To my fellow Latter-day Saint (Mormon) friends, this will come more as a shock, because we have been taught so many things about what awaits us in the afterlife. But, I can rehearse it all back to you and still, because of my finite mortal brain (which likes beginnings, middles and endings) I get hung up at the abstract concepts of "no beginning" and 'no end" and "one eternal round". I know that I should expect to feel peace being back in the presence of our loving Father in Heaven, but that isn't what makes me uncertain. I get stuck with the transition part as we go from the mortal realm to an eternal realm, and how my brain will have to reconcile concepts that are not easy for this mortal brain to process. I'll not go on in detail here, but, I think you get the idea.
About 20 years ago, I was talking about my fear to my friend, Anne, and she gave me a book to read written by someone who had a "life after life" experience. It's called Embraced by the Light. It was very helpful. Not too long after that another friend gave me a book called Life after Life, and it added additional insight upon what I had recently read.
The thing that really struck me is that in both books, the reason that these individuals weren't kept in the Spirit World, was because they were instructed to go back and work on specific relationships in their lives. There was so much talk of LOVE and it's power. (Hmm, sounds like the name of my BLOG.)
I came from both readings with the exact same global message. The purpose of this life it to come to really Love one another. Not just family and friends, but love everyone. This is Christ-like charity. And the comfort that helps me now, when I start thinking about the other side, is that since then, I have really tried to change how I feel about every person that crosses my path. Every person. I want to show them compassion, or joy or kindness or what ever I am impressed to do so that when they walk away, they feel better about themselves, or in short... they feel LOVED!
So, 10 years later, when I saw the film Moulin Rouge with one of the people who I know actually exemplifies this behavior naturally, I felt like I had heard this message before. And, I had - from those books I read and from the scriptures. Isn't love thy neighbor as thyself the second of the great commandments? And wasn't the parable of the Good Samaritan the model that he gave to help us understand what that commandment means?
The first words the main character types: The greatest thing you'll ever learn is just to LOVE. It starts with you showing love through all the ways the Savior set as the supreme example. The second part he types: and be loved in return -- that will most assuredly be the consequence of your efforts as you do the former. People love people who love them first. It has always been that way.
Sometimes we are given "out of the ordinary" opportunities to practice. In August of 2012, when I was called to be the Relief Society President at church, I was given a great opportunity. This was a daunting responsibility. I wanted so much to come to personally love each sister in the ward and not just a 'love everyone collectively', which, of course, I did at first. But, I wanted to come to know enough about each sister from my own personal experience with them so that I could truly love them for who they are. This was my favorite part of my calling. I could feel my heart grow and grow each week as I would go and visit with sisters individually. And that was done as I woke up each morning and asked the Lord in prayer, who needed me to come see them that day. There was always at least one name swirling around in my mind and heart. And then when I would visit with them, I knew exactly why I needed to see them that day. They needed to feel loved. Relevant. Not invisible.
Sometimes, I would tell the Lord who I thought I should see, and he would guide me to someone else. Those were difficult, because, I knew things about some of those sisters and I though a visit from me could really help them. But, I would always follow His will, and of course, He was always right on the money!
Now, I have been given the "out of the ordinary" opportunity to expand my ability to love as I go to the Cancer Center each week and learn about and come to love all my oncology nurses. Already, I don't need a name tag to know their names. I am learning about them and their families. They treat me with such kindness and compassion. I love these very special woman from all ages and experiences. Oh! It is wonderful.
And, it is happening each week as many of you come to visit and I get to know you.
Here's what I am trying to express to you. I am grateful for the opportunity this illness gives me to bump up my game, as it were. I think that this would be a wasted opportunity of growth if I didn't try to develop more deeply the Christlike attribute of true Charity and to come to understand that if my relationships on earth have been richly developed, that my fear of passing over into Heavenly Father's world will be calmed and I will feel comforted.
A dear friend shared this with me, when someone for whom she cares very much wrote about the recent passing of his mother. She felt impressed to share it with me, not knowing ahead of time about my "little" fears. It has helped me so much.
"I don't know what she heard or how aware she was in those last hours, but she obviously conquered her fear of dying. I can only imagine what it must be like to pass through that veil, into the arms of a welcoming committee of loved ones, family and friends. There, as here, I can imagine the 'hour' or so of disorientation, the need to pause and reflect on loved ones recently left behind, and attempting to grasp what lies immediately ahead (there's probably a padded bench in a quiet place near the arrival point reserved for just such contemplation). I can imagine the feeling (or loss of the feeling) of the weighty body, the sudden absence of accumulated bodily aches and pains, fatigue, weariness. I can imagine that grief subsides as joy and excitement gradually pushes it out of the way, contemplating the wonders of the spirit world and the gospel work that must go on there at a frantic pace (a pace very familiar to Mom). I can imagine grief gradually, yet quickly, loosing it's hold as thoughts, confirmation, and testimony of the reality of the spirit world become real, very real. And the comfort of knowing that the family members left behind in the mortal world also have testimony of the reality of God, the existence of heaven, the continuation of Life after death, and the eternity of the Gospel plan, the certainty of family reunion, and the promise of a priesthood marriage sealing and all that portends. And most importantly, that Love is --and has always been-- the very basis and purpose of every step of the Plan of Salvation, with it's multitude of cycles of death, birth, death, and re-birth, often separated by veils, yet ever progressing forward."
These words, penned by someone I have never met, penetrated my heart and I knew what he was writing was true. Such beautiful imagery. It brought me comfort and helps calm my mortal brain from thoughts that used to bring me fear.
There is no fear in love; but perfect love casteth out all fear...
he that feareth is not made perfect in love. We love him because he first loved us.
1 John 18-19
Addendum - added November 4th, 2013
Today, November 4th, marks three years from the day my mother peacefully passed from this earthly world to our Father's world. I didn't know that the last conversation I had with her would be my last. But, while she slept due to the heavy pain medication those four days, I would talk to her. I would ask her if she would come to me in a dream or something and just tell me that everything would be all right and that I didn't need to be afraid. That, it would all make perfect sense once I wasn't encumbered by this mortal shell. It didn't seem a lot to ask. I was hopeful.
Years had gone by, and when I would tell someone the story of the night she went back home, they'd ask, "Did she do it? Did she come in a dream?" And I'd say jokingly, "No! She's holding out on me!"
Earlier this year, sometime in the spring, I had the most amazing thing happen. It was early in the morning, and I guess you would describe it as the last dream of the 'night'. Perhaps you have had one of these dreams that seem so real, so different from other dreams. I saw myself sleeping in my bed, but it wasn't the same as my bed or bedroom as often dreams give obscured images than what is real, yet in the dream you know it is supposed to represent your room, your bed. Slowly, the view of the bedroom wall was obstructed a layer of space was pealed away exposing a portal to another dimension. It had those fuzzed out glowing edges like you would see in a dream sequence in a movie. As the circle of another space and time came into focus, I saw the face of my mother. Not as I had last known her face, but as I remembered she looked at about 35 years old. Her jet black hair, flipped up at the edges. Her skin so fresh and unworn by life's burdens and worries. Her face was beaming the most beautiful peaceful smile I have ever seen. I reached out my arms to her and I kept trying to call out to her, "Mom! mom!" But it was as if my mouth was bound and I could not actually speak with my lips the words I was crying out in my mind. I tried again and again, reaching with my arms but unable to articulate my call to her. She just kept smiling and I felt my whole body burn inside, and I cried great tears the same as when you receive a deep and profound spiritual witness of truth. Then that portal started to fade away as I was still reaching and calling for her until gradually I awoke to my reality, still reaching and sobbing real tears that obviously had started long before my awakening. My bosom still burned inside of me with that same spiritual fire. I will never forget how real it all was.
Although she never uttered the words I asked her to tell me, I knew this was my mother trying to convey the comfort I had been seeking. I felt a peace and love emanating from her that pierced my heart and mind.
In retrospect, as I think about my current diagnosis, and how long this dreaded cancer must have been growing in my body, the timing of this experience that bridged the gap between my earthly world and the world that has no boundaries seems so merciful. And, while I do not mean to imply that I have anything but hope, regarding the miracle for which we are all praying, I am grateful that Heavenly Father allowed this brief, yet profound connection to His world. A seemingly small and simple way to help me overcome my fear.
Yes, I know Heavenly Father Loves Me!
I apologize for the delay in my post. I was working on my entry when our modem died and we were left without internet service for almost 4 days. I know, first world problems!
Last week I finished my second cycle of treatment, which puts me a third of the way through my treatments. I thought that week was hard, until I had to go through this past week, which was Week one of the third cycle.
And now for the technical portion of the story
Here are some details on some minor complications that have occurred. To refresh your memory, I have a Power Port that was surgically implanted in my chest during my hospitalization back on August. The purpose of the port is to help preserve my veins from the harsh chemicals used in my treatment. Also, it makes it very simple to draw blood as needed without accessing the veins in my arms week after week.
Top, illustration of port placement in the chest; I have the dual port, shown on the bottom.
I'll tangent for a second to tell you that since my mastectomies, I am not able to have any veins accessed, not even blood pressure taken, from my right arm. This is because I also had cancer in the lymph nodes in the right axillary (arm pit), and thus they had to be removed. This makes me vulnerable to something called lymphedema. My oncologist was adamant that unless it was an absolute life threatening emergency, I was not, in any circumstances to allow any sticks or BP's taken on the right arm. That means, my left arm is all the phlebotomist get!
For those who have followed this Blog since my surgery, you have read what a difficult time they had accessing my left arm and hand veins in the hospital, before my port was inserted. These veins are SHOT. The chemotherapy from breast cancer pretty much wiped them out.
Now - back to the topic. Since my very first chemo treatment in September, when the nurse accesses my port, they can flush the saline and heparin IN, but they have struggled to get a blood return for my weekly blood work. This has added sometimes 2 to 3 hours onto my treatment day time. They flush it again and again. They have me bend forward, bend backwards, turn my head one way and the the other, while coughing, until finally they administer TPA or Cath-flow into the port. We wait 30 minutes and try again. Wait another 30 minutes and try again. Sometimes we get a great blood return and get on our way. Other times, nada! Oh, and you can only use the Cath-flow a certain number of times and that's it!
On my treatment a week ago, it was determined that I had my limit on Cath-flow. So they did a dye study with x-ray to see what was going on inside my chest with the port. It was determined that I have developed fibrin sheaths along the end of the catheter that is placed inside my veins from the port. These sheaths form because the body's immune system fights the foreign object (in this case the catheter tubes) and starts forming cells which collect until they extend past the end of the tube. When they flush saline IN the tube, the sheaths stay out of the way. No problem. We can get stuff in. But, when they pull back on the syringe, it forms suction and the tail end of the sheaths suck into the tube, blocking or stopping up the tubes ability to draw the blood back through the catheter to give a blood sample.
The bottom line is that I can no longer use the port for blood work. The only fix is a risky procedure that feeds a tube up through a vein in my groin and try to clean off the end of the catheter. It's not advisable for two reasons. 1- perforation of the vein and 2 - the fibrin sheaths would just develop all over again. Oh, and get this. My body formed these sheaths faster than most people. Of course!
So, my poor, abused veins of my left arm are all we have (well unless I start letting them use my feet or ankles, and THAT is not happening). The sticks are VERY painful, and they NEVER get it on the first try. My veins roll and blow and hide and are not cooperative. It stresses me out every single time. Just this last Tuesday, the first stick in my hand literally brought me to tears, crying for the terrible pain. So they called for Mayra, who, evidently is the "Vein whisperer". Well, actually, that is what I call her! The stick hurt, but she got the blood her first try and that's all that matters. We shall call for Mayra FIRST from now on. Please come to me, Vein Whisperer!
Regarding how I am doing - to be brutally honest
Everything that I have read from others who use this chemo regime indicates that the side effects are cumulative. I have found this to be absolutely true. Each week has been more difficult than the previous week. But, THIS week was a real game changer. It felt like an exponential change in intensity than just the gradual progression of the previous weeks.
DISCLAIMER: The following is just to give you an idea of what it is like, and not a solicitation for sympathy. It is what it is.
To describe the overwhelming fatigue, I tell people that it feels like my body has heavy weights attached as I am trying to move through space, becoming exhausted with every step and motion. I feel so heavy that it is hard to tell the boundary where my body stops and the couch or bed begins. I just feel enveloped in the couch, I feel so heavy. And, brain tired, where I cannot put together a cognitive thought. Sometimes I cannot even find solace in sleep because the steroids induce insomnia, and yet it is painful to keep my eyes open. I can't read. I can't watch TV. I listen to beautiful music. Or more accurately, beautiful music is in the background. I am not certain I am always listening.
The nausea is terrible. But, it is easier to describe to anyone who has been pregnant. When I finally eat because I am so weak, it is a struggle because the act of chewing makes it worse. I feel better for maybe 30 minutes and then the wave of nausea comes back again. Food tastes different because the Carboplatin is platinum based and I have a persistent terrible metallic taste in my mouth. Even water tastes terrible.
This week sores have begun to develop in my mouth and throat, also making eating, as well as swallowing difficult. I wake up with a pretty bad headache every morning too.
Psyche - I can't just leave you with this sad story
Here's the thing. Everything above is absolutely true and unexaggerated. But, when you come to see me, you bring me life and energy. It's probably more accurate to describe me as a leech, sucking the life from you. But, I am truly fed by your spirits. I am enlivened by you. I can feel all those symptoms and still feel transformed while you share your energy with me. I feel ALIVE! It is amazing to me that it happens every single time any of you or my family come to visit me.
This is REALLY hard!! And, I am very aware that I am not doing this alone. I have an army of angels here on this earth who support me with their love and prayers. I just want you to know that it means so much to me. You are making a difference in my life.
For this, I am truly humbled and grateful.
I have thought to sit down to write so many times in the last month. I actually intended to write a follow up from my last entry while Doug and I were at the beach with Christian and Mary's family. But, since I procrastinated, there is more to write about, and I guess that is a good thing.
At that same visit with Dr. Lee, (August 29th) where she laid it all out on the table, she talked about my treatment plan. The standard treatment for any of these epithelial cancers consists of two chemotherapy agents: Carboplatin and Taxol. These two agents are given every three weeks, times six. She also told me that I was a candidate for the Intraperitoneal (IP) delivery of the chemo agents.
(that's where they infuse the drugs directly into my abdomen through a port in my belly)
I interrupted Dr. Lee and asked her if we had already talked about my previous experience with Taxol. She said, "No, but please tell me now." I told her that Taxol was the chemo agent that was used in my second set of chemo during my breast cancer treatments, and that I had some pretty intense side effects. I explained how after just one treatment I had experienced the worst bone and joint pain ever in my life. And, that after the second treatment, I could no longer walk on my own without holding on to someone, or a wall.
(Taxol attacks bone marrow cells) Additionally, I had terrible neuropathy in my hands and feet. My oncologist stopped the treatment. I was supposed to have four total, but he was so concerned about permanent damage that he stopped that treatment.
She first said that given this information, we would not consider the IP delivery. And, she said that she was inclined not to use Taxol at all. If I could only make it through two treatments before, how would I make it through all six. Dr. Lee said there is a "sister" drug called Taxotere, that has the same active ingredient, but it is a different formula that has less severe contraindications for damage to the bone marrow. However, it did have it's own unique side effects. I felt somewhat relieved to know that I would not have to endure the wrath of Taxol again.
I also told her about how plans were made months ago to go to the beach with Christian and Mary and their family the second week of September. She said that I could wait to start treatments until I got back. That was nice. So, the plan was to see her in one week for blood work and final instructions.
On September 3rd, I saw Dr. Lee and she did a final post operative exam. Then, she told me about a newly released study out of Japan that published their results just last week. It wasn't a very large study, only about 630 women with Stage II to Stage IV ovarian cancer participated. But, the results were still significant. She told me that when she saw the notification, she thought of me. Half the women were treated with the standard care of Carboplatin and Taxol every three weeks for six weeks. The other half were treated with a "dose dense" taxol regime. What that means is that in the three week cycle, on day 1, the patient is given the standard dose of Carboplatin, but a smaller dose of the Taxol. Then one week later, day 8 they have another smaller dose of Taxol and then one week later, day 15 another smaller dose of Taxol is administered. This cycle continues over 18 weeks, with no breaks. You have a chemo treatment every week.
In the standard treatment, the dose of Taxol in 180 mg. With the dose dense treatment, you get 80 mg each week. This means that over the 3 week cycle, you are actually getting MORE Taxol (240 mg) but spread out. The dose of Carboplatin is exactly the same as the standard treatment.
Cycle 1
Day 1 - Carboplatin/Taxol
Day 8 - Taxol
Day 15 - Taxol
Cycle 2
Day 1 (or day 22) - Carbo/Taxol
Day 8 - Taxol
Day 15 - Taxol
etc.
Dr. Lee told me that the data showed the following improvements over the standard of care:
The median Progression Free Survival (that means how long before the first recurrence) went from 17 months to 28 months. And the median Overall Survival went from 60 months to 100 months.
Now, bare in mind this is the median. It isn't the average, it just means the middle number, also there were participants whose cancer was not as advanced as mine, so while those statistics are impressive, they include patients with lower stage cancer. BUT, BETTER is BETTER! More time, is more time.
However, it would mean that I would HAVE to go on Taxol and not Taxotere, because if we want the benefits that appear to be improved with this treatment plan, we have to replicate the study method exactly.
Dr. Lee asked if I was willing to try it.
Of course, with no hesitation....I said YES! We both agreed that if I ended up showing the same kind of degeneration that we'd go back to the backup plan with Carbo/Taxotere once every three weeks.
I left with increased optimism.
I was able to read for myself the article that was published. Here's the downside. Only half of the women were able to complete the study due to severe toxicity from the weekly Taxol treatments. Mostly the issue was due to dangerously low white and red blood cell counts. 60% of the women needed to skip weeks of treatments to help give time for blood counts to rise and a significant number of women needed one or more blood transfusions along the way. This is a HARSH and aggressive treatment plan. But then, I have a very aggressive cancer.
Undaunted, I went to the beach and had the most wonderful time with my family. I sat in the sand while the waves washed over me. The vast expanse of the ocean was my temple that week. I prayed every day pleading with Father in Heaven to bless me with the desires of my heart. I expressed gratitude for my life and for my incredible family and thanked him for specific blessings that have been poured so abundantly upon me over so many years. I wept so many times as I thought about the beauty of this world and what a gift He gave to all mankind.
While sitting at the beach each day, my thoughts would go to deep places. I came to an understanding that gave me so much peace and power. Let me preface this by saying I totally understand my responsibility to submit to the will of the Lord. I know for a certainty that His plan for me will always be better than My plan for me. But, in my deep thoughts, my loving Father helped me understand that he WANTS us to tell him the desires of our hearts. He wants to know what we want. He LOVES us. He wants us to be happy. As long as I also am willing to acknowledge His hand in all things and that I willingly say "Thy will be done", I believe he will always consider our petitions. It's not like His will for us was decided and fixed eons ago. That would make agency pointless. That would be like predestination. Why else would we be commanded to pray? I am coming to believe that our personal prayers and fastings and petitions of friends and family can actually change outcomes. Dare I say it? Heavenly Father can change His will if He desires it to be so.
Nevertheless, His will be done. Always.
So, we continue to pray for miracles. Understanding, and willing to accept His will.
This last week, I finished my first cycle of treatments. On Tuesday, next week, Cycle 2 begins with the combination of Carboplatin and Taxol. 3 treatments down, 15 to go. I am scheduled to finish at the end of January, but that is only if there are no delays due to blood counts or other toxicities.
Side effects with this treatment plan are cumulative. My worst day was yesterday. It was like how I remember breast cancer treatments. So harsh. Today was better. I have nausea and joint aches and I am SO exhausted. Sometimes I wake up with a terrible headache. I'm still suffering from the after effects of the bowel resection. Most days, THAT is my agony more than the chemo side effects. It is those symptoms that make me cry every day. So painful. It is torture.
My hair started falling out a little on day 5. After Tuesday's treatment, it started falling out all over the place. It will take longer for me to lose all my hair this time, because I didn't get the one large dose of Taxol. But, it is thinner and thinner every day.
I am so appreciative to all who have brought meals, given me rides, helped me clean or organize in my home. Also, for your prayers and good cheer.
Thank you.
I mean, really.
Thank you.
1st Treatment Day - Doug and I waiting for the pre-meds
Sometimes the drugs make me so very tired.
I may feel icky, but never to terrible too enjoy my grand-children.
I have had a hard time making myself sit down and write. I met with Dr. Lee two weeks ago for the
first time since the day of my surgery.
I had been anticipating with anxiety meeting with her, because I knew
she was going to be straight up honest with me about what the future holds for
me.
Dr. Lee came into the examination room where Doug and I had
been waiting. She checked my incision
and was pleased with the healing, generally.
I had a small pocket of infection at the bottom of the incision, but it was where the dissolvable staple tip had penetrated the skin.
She took out the pathology report and began to review it
with us. Most of what she said was just
a more detailed version of what Dr. Lopez told me on the day I was released
from the hospital. She, however,
clarified one thing. The report did indeed indicate that the cancer began in the Fallopian Tube and that technically, it
is a Fallopian Tube cancer, like Dr. Lopez explained. But, there are certain “definitions” that
have been established in diagnosing cancers.
There is something called the “tumor burden”. Dr. Lee explained that because the size of
the tumors were larger on the ovaries than in the fallopian tubes that the
“tumor burden” definition requires the cancer to be classified as a Primary
Ovarian Cancer. I looked confused. She said “it doesn’t matter, it’s the *same cancer and the treatment is the same and the prognosis is the same.”
But, then she took a breath and got really serious.
She told us that she didn’t believe in “candy coating” the
seriousness of this disease. She started
by acknowledging that everyone is different and that she can’t tell me about
how I will, personally, respond to the treatments. And then she told us that only 20% of the
women who had the same level of late stage cancer as I have were still alive in 5
years. Additionally, she said, it is a
hard five years, with recurrences and more chemotherapy and potentially more
surgeries. Truth is, most women only
get about 2 years.
Doug and I sat silent.
I couldn’t even look over at him, because I didn’t want to begin
sobbing. We were both numb. These statistics were worse than anything I
had read online.
We had a good cry together later that evening. We talked a lot about miracles and
faith. My faith is really being tested.
Interestingly enough, the next day, Doug was preparing to
teach his lesson for church on Sunday.
We read together, since I am not able to attend church yet. We started reading talks from April’s General Conference. They were on faith. Of particular interest was Elder Eyring’s
talk. He used the expression “integrity
of faith”. We stopped and talked about
what that meant. I had the thought that it
means that we can’t go to our Father in prayer and tell him that we know that
he has the power to heal but then in our thoughts and quiet times, begin
worrying about the “what ifs”. We sometimes define integrity as acting the same regardless of the situation we are in - Being true to ourselves and our beliefs, always. It means the same thing in this application. Faith - nothing wavering. (James 1:6)
We learned the next morning that he accidentally read October’s lesson
and not August's. Doug said it was no
accident – that he really needed to hear that message now. I did too.
I’m sad to say that in the last two weeks, Doug’s faith has
been greater than mine. I find my mind
thinking about only 2 years, or even only 5 and becoming so scared about that as a
possibility.
Then, one morning last week I happened to turn on Good Morning
America while I was trying to wake up.
They had a musical guest named Mandisa.
She is a gospel singer/songwriter with a contemporary flair. She sang this song on the show.
It really moved me. I
laid in my bed and cried. I don’t know what is ahead, and I am still scared. But I am going to
do everything I can to believe that with enough faith and prayer that my life
will be extended longer, MUCH longer than 2 or 5 years. Heck, that’s not even good enough. I want to be here for the birth of all my
future grandchildren and their baptisms and graduations and missions and
marriages.
This one line from an Aerosmith song, that was from Armageddon, keeps going through my mind these last two weeks.
“… I don’t want to miss a thing”
I'm am an overcomer.
*Remember my earlier post: Ovarian, Primary Peritoneal and Fallopian Tube Cancers are all epithelial cancers. They only differ on where the cancer starts. The tumor burden rule is the only reason why, once again, the name of the cancer has “changed”.
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