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.
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