My oncologist started me on a new medication on Friday. It's a hormone blocker and if I tolerate it well, I will be on it a minimum of five years because my cancer was estrogen and progesterone receptive positive, meaning it feeds off hormones. I went to pick up my new medication from the pharmacy on Saturday, paid my $5 co-pay and noticed on the bag that it said my insurance had saved me $194.99. WOW!! $200 a month for one medication! That is a lot of money! That got me wondering how much my other medications run, so I started looking. $200 for one. $50 for another. One I can't tell until I refill it. Then I decided to look up the monthly Lupron injection I have to get. $1,060. $1,060!!! $1,060 a month so that I can then take my $200 an month prescription, but the injection gives me such severe migraines that I have to take another prescription that probably runs another couple hundred dollars (that's the one I don't have an exact figure on until I refill it). As these insane numbers swarmed before my eyes, I began to wonder why. Why me? Why was I so fortunate? Why did God decide that my life was worth saving? Before I went up to Stanford, when I was still having spasms, I called my insurance company and asked them how much they had paid out to date this year. Our plan has a two million dollar maximum per person and I wanted to make sure I wasn't getting close, because I didn't know if that was the maximum amount billed to the insurance or the maximum amount the insurance actually paid out. Thankfully, it was the amount they paid out, and I asked the customer service rep I was speaking to how much they had paid out in on my account this year. "Around $300,000" she said. $300,000. $300,000. And that was before a three day stay at Stanford's epilepsy center, before Botox treatments, before five years of monthly Lupron injections at $1,060 a pop, before monthly prescriptions at $200+/mth. We haven't yet received the bill for Stanford, the Botox treatments and my latest surgery at Memorial, but I would not be surprised if the insurance ends up paying out near half a million by the end of the year on my bills alone.
Our family sponsors a child in India. His name is Jit. According to the information we were given, the average family in his area lives on about $25 a month. In one year, our insurance company will have paid the equivalent of 20,000 months of living expenses for an entire family in India just to keep me alive and well! Somehow that doesn't seem quite right, and yet...Life isn't fair. Some are born to poverty and some are born to riches. Some are born healthy and some are born sick. Some are born into love and some are born into hurt and pain. I could turn down all future care, but it wouldn't help anyone else one iota. No one else would receive the care I would be turning down. I couldn't trade my life for the livelihood of 100 Indian families over 17 years. I can't trade my medical care for routine vaccinations needed around the world, BUT what I can do is realize the price that was paid for my life. Sometimes, we as Christians claim that we know a price was paid for our lives, but we don't live like it. If we truly believed that the very Son of God bought us with His own blood, we wouldn't live the way we do. I'm sorry but we wouldn't. If you really believed that you were worth that, if you believed that you had a price tag that said DIVINE BLOOD on it, you wouldn't sit on the couch and waste the gifts you were given like you do! You were given ONE life. ONE. What are you doing with it?? I will be honest with you. I was a hypocrite too. I wasted a lot of hours, a lot of opportunities and a lot of talent in my pre-cancer days, but I'm going to do everything within my power to make up for that now. Half a million dollars were paid in one year alone to keep me alive. Millions of people across the planet aren't so lucky. Since I've been given a second chance, I'm going to make the most of it. I don't know exactly what it's going to look like, but I want to make the most of every minute.
One small part of my effort to pay it forward includes collecting blankets to hand out to the homeless. Not only am I blessed to be alive and fighting my cancer, I am warm and dry during the process. Not everyone has that blessing, so I'd like to come alongside Church in the Park's efforts in Modesto and collect blankets to give to them to pass out in December. If you have blankets or funds you would like to donate to this, let me know. Thanks!
Jason left this morning to go back to Riverside for a week. He'll be back for three days for Thanksgiving, then head back down for a week. While we will definitely miss him, we have really appreciated the flexibility his employer has given him to be home while I recuperated from surgery. I'm not quite 100% yet, but definitely close enough. I went for a very brisk walk this morning and came back without much discomfort, so I know I'm nearing full recovery. Yay! It's only been 9 days since my surgery but it feels like much longer. I've really missed being able to get out there and walk. My ability to exercise or not makes a huge difference in my mental health, so the combination of it getting dark earlier, being in pain and not being able to exercise has made for a gloomy me lately.
My transition to life without Facebook has been interesting. I had definitely turned it into a lifestyle! I often think of life occurrences in terms of Facebook posts, so it's a little odd not to have "someone" to share every little detail of my day with, but at the same time, I'm finding myself sharing the more amusing details with actual individuals, which prompts a dialogue, which makes it more interesting than a mere post on Facebook that gets a few thumbs up a few hours down the road. It's definitely a different way of doing life and it takes some adjusting, but it's good for me, at least for now.
Speaking of transitions, I'm looking forward to entering the work force again. I have too much of a love for people to be at home alone for hours on end. I need to be out and about, doing something with myself. Because we have a trip to Oregon coming up in a month, I am going to wait until January to begin employment, but I'm starting to put feelers out now, so if anyone knows of a need for a server, hostess, cashier, or front office person, give me a holler.
That about does it for today's update. I will leave you with the verse that stuck out to me in my reading this morning:
"Wait patiently for the Lord. Be brave and courageous. Yes, wait patiently for the Lord." Psalms 27:14 NLT
I had my implant surgery on Monday. It was a day surgery, in and out within seven hours. The pain wasn't anything huge, although I did find it hard to shake the fatigue for a couple days.
Each day post surgery, I found myself struggling more and more with my moods. Honestly, it was scaring me. I thought maybe the anesthesia had messed up my brain chemistry or something because I just felt really, really down and if I could snap out of it, it was only briefly and then I would come crashing down again. This morning, three days post surgery, I was in the shower when my entire cancer journey came galloping through my brain, starting with the day I stood at the desk scheduling my biopsy, back to when the doctor found the lump, forward to when we received my positive cancer diagnosis, to the day we shaved my head, to the nerves of the first chemo treatment, to the dread of doing the second treatment without Jason, to the overwhelming nausea of each treatment, to the whooshing sound and severe pain upon awakening from my surgeries to the mysterious spasms that took over my body. As I sat there in the shower, I sobbed and sobbed and sobbed and sobbed. You see, no matter how bold a face you put on, no matter how silver a lining you see as you walk the journey, cancer is AWFUL! It is HARD! It is EXCRUCIATING! We as survivors have a choice on whether we chose to dwell on that or not, but to discount it would be a lie.
I trust that God knew what He was doing when He set me on this path and I know that I have grown as a result, but I do hope that I never have to walk this road again. Today, I am packing away my cancer cards, books, etc. I will be sorting through my hats and scarves, giving away most of them and keeping a couple that I might still want to wear. This part of my journey through life is over and I honestly can say: "It's about time!"
Sitting on the back porch, sipping a pumpkin spice latte, I am content. The housekeeper a friend is helping us pay for is cleaning the house so I am forced to be outside. The smell of cleaners gives me severe migraines.
It is beautiful out here. A faint breeze gently blows through the air and rustles the leaves of our now barren peach tree. The plump green oranges on the tree behind me have yet to ripen, but burst with promises of so much sweetness to come. I can hear the faint sound of a leaf blower in the distance and the trickle of my neighbor's pond next door. The occasional cawing of a crow interrupts the stillness and makes me smile.
Down the street, a dog is barking. I have no idea what he is trying to say, but it sounds mighty important to him! I wonder if he cares that no one seems to listen.
Contentment. In the moment. Peace.
I cannot find myself today amidst the fogginess in my head. It is not the dense fog of the major depression of my past, but the mild, confused fog, perhaps brought on by pain, perhaps by meds, perhaps by boredom, perhaps by some depression, or perhaps by an assortment of all of these.
My head hurts. My teeth hurt (I need major dental work, but buzzing drills and migraines and muscles spasms are not a great combo). My muscles hurt. And yes, I'm feeling sorry for myself. I'm tired of trying to see the silver lining. I know I have a good life. Actually, I have a great life, but today, I don't care. I don't feel good. I feel like crap actually and I'm tired of feeling that way. My therapist is encouraging me to try to live in the moment. How am I supposed to live in the moment when my moment includes a major migraine and teeth that won't stop throbbing?? Yes, I'm thankful I'm not a human slave. Yes, I'm thankful that I have a husband who loves me and that I have two amazing kids. Yes, I'm thankful Jason has a great job with great insurance and that we have incredible friends.
At the same time, though, I'm mad that the psychiatrist that I LOVE no longer takes my insurance and I have to find another one. I went through the ringer with him and it's really hard to find a good psychiatrist. From experience, I can attest to the fact that many psychiatrists out there can just make the situation much worse rather than better and right now is not a good time for me to be psychiatrist hunting. I met with a new psychiatrist my former one recommended about three weeks ago and I REALLY don't like him, but I have to go see him again because I'm almost out of anti-depressants and need a refill. Besides, I do need to find someone, so I should probably give him at least one more shot, but he tried to argue with me about the fact that my Paxil (anti-depressant) and Tamoxifen (traditional hormonal therapy for pre-menopausal women with breast cancer) don't actually interact. My oncologist and my former psychiatrist went into great detail over this and researched it thoroughly months ago. Putting me into menopause isn't something we did lightly. And then his darn air-conditioner puts me into spasms, badly!!! Ugh. I'm really dreading going back.
Anyway, I'm whining. I'm feeling down today and I can't seem to snap myself out of it. Honestly, I'm scared, because with all the tweaking of my meds, I fear that I will go into a medical depression and without a good psychiatrist on hand, that really scares me. The "rational" depressions don't scare me as much because I can talk through them with Jason and my therapist, but the medical ones aren't rational. They make me do stupid, impulsive things like my last suicide attempt, where from one day to the next, with only one bad fight with a friend in between, I went from happy to popping a handful of sleeping pills in less than twenty-four hours. It was a rash, completely irrational act and as my meds go up and down and around and around in my brain, I fear that irrational, dangerous brain will return.
We looked into paying cash so that I could continue to see my former therapist and we were told his cash rate is $325!!! WTH! Jason's going to attempt to work his negotiating magic next week, but I'm not sure how much he can do. The reason my psychiatrist no longer takes my insurance is that he joined Sutter Gould, so it's more corporatized now, and corporatization tends to mean less flexible, but we'll see. My doctor wasn't happy about it. He didn't understand at all why they couldn't continue to accept the same insurances, but it wasn't up to him. If you wouldn't mind praying that things would work out and I could get back in with him, or that I would be able to quickly find another capable doctor who could help me walk through this medical mess confidently, I would really appreciate it.
Thank you.
My heart is heavy tonight, troubled by issues that are far beyond my ability to fix. Laying in bed for hours on end these days, I have plenty of time to think and pray. God and I have been talking about a lot of issues and I'm realizing more and more how little I know and understand.
This morning, I was reading through part of the gospel of John, the part right before Jesus was arrested and crucified. He prayed for His disciples and then He prayed for those who would believe in Him through their message. As part of His prayer, in chapter 17, He said:
20“I am praying not only for these disciples but also for all who will ever believe in me through their message. 21 I pray that they will all be one, just as you and I are one—as you are in me, Father, and I am in you. And may they be in us so that the world will believe you sent me.22 “I have given them the glory you gave me, so they may be one as we are one. 23 I am in them and you are in me. May they experience such perfect unity that the world will know that you sent me and that you love them as much as you love me.
I read that and I ached, and ache still, because I know that Christ's followers are anything but unified these days. Why do we argue and dispute and divide ourselves when the desire of the God we serve is clearly that we serve in perfect unity? What is the answer to this problem? How do we, as modern believers, go about fulfilling the desires of our Lord?
In my life, I left a group of believers that I loved with all my heart, in discord and strife. This happened nearly a year ago and while the pain doesn't tear me apart as it used to, the ache never completely leaves, because it was not right for Christ's followers to tear each other apart like that. It just wasn't. And yet I hear stories similar to mine all the time, stories where one or both parties may have been in the wrong and instead of coming together in love and working through it as God intends, we tear each other apart and both parties go separate ways a bleeding, broken mess.
WHAT ARE WE DOING??? Why are we claiming to follow Christ and yet tearing each other apart?? How are we supposed to live in unity as He prayed we would? How do we, as millions of believers with different opinions of what living as Christ intends us to live looks like, live in unity? How do we work through our differences so that, as Christ prayed on that dreadful night, we "may experience such perfect unity that the world will know that you sent me and that you love them as much as you love me."?
The cost of our discord is not small. In fact, our unity is so important that it was one of the last things Jesus prayed about before He was arrested. I'm seeking as an individual to know what that looks like in my life, how I am to live in unity with my brothers and sisters. I'm also praying that we as a Church, as a body of believers, wake up to the damage we are doing through our division and learn what it means to live in unity.
I have a flippin' headache. I started a post and had almost finished it when I accidentally deleted it, and I just don't feel like retyping it. It was whiny anyway, so I decided to go a different route. I'm not sure what that route is going to be, but I'll just type and we'll find out.
Have you ever wanted to fly? I have. From the time I was a little girl. I remember jumping off my grandpa's deck and flapping my arms so hard in an attempt to fly off into the air. It never worked, but I kept trying.
In my dreams, though, I fly. When I was young, I flew often. I loved that feeling. There was nothing like it. For awhile, my flying dreams stopped, but they returned a few months ago, not as often as before, but still so magical.
It's kind of funny that one of my dreams is to fly, since I am terrified of heights. Mom and I watched a Dateline NBC last night about people who had summitted Mt. Everest. It was amazing to see what they invested in time, money and energy to make their dream come true. Some people even died in their attempt.
As I was watching that, I thought: I want to live. I mean, really live! I don't want my fears or the idea that it would just take too much effort to keep me from achieving my dreams. For several years now, I've wanted to write a book, but I just keep putting it off. I'm not sure why. I wrote the outline a few weeks ago, but that is as far as I got. I don't know if it is the fear of putting so much time into a project and then having it fail, or maybe it's the fear of revealing too much about me and others. (Yes. You may laugh now. I know I'm mostly an open book, especially on here, but there are still things you don't know, and when I think of what I want to include in the book, I'm not sure I can handle the world knowing how human I really am!). It is something I really want to do, that I feel I really should do, but I'm afraid. I need to face my fears, and climb my Everest.
I also have a sermon that has been burning in my heart for a year now. At the time, we were involved in a ministry where lay people were allowed to preach and I was excited because I felt like God had laid this message on my heart. Unfortunately, the opportunity for me to preach never came to fruition and the sermon is still burning a whole in my heart. I realized a couple weeks ago that I don't need a pulpit to preach. We now have this thing called YouTube (amazing, I know!!). I could videotape my sermon and post it there...but I haven't done it. I think it's easier to hold on to my dream of preaching without ever trying it because that way, I don't have to chance finding out that I might be a terrible speaker! Again, I need to face my fears and climb my Everest.
Well, that is all my thoughts for now. A game of checkers with my son is calling my name. Over and out!
I met with two Standford neurologists this morning. Very kind women, and very thorough. The "student", who was already a neurologist herself but studying for a specialty or something like that, took a detailed medical history on me, and then did a physical examination. My body decided to put on quite the show and show her exactly what my spasms look like (she didn't get to see the paralyzed episodes or the loss of speech, but she saw pretty much everything else). After conferring with her teacher, they both returned to the room and this is what they said:
They believe that my spasms are not epileptic, but are caused by pain. The pain from my migraines gets so intense that the way my body responds is through spasms to relieve some of that pain. This didn't appear to be new concept for them, but something they've dealt with before, although I didn't think to ask them if that were the case or not. What Dr. Le (the teacher neurologist) wants to do is put me on migraine medicine. Because I am so sensitive to meds, I'll start on the "baby" dose, as she called it and gradually up it. In the mean time, I will be weaning off the Baclofen (muscle relaxers), and eventually off the Valium. I cannot begin to tell you how excited I am about that! Those drugs make me so sleepy it's not even funny.
She will also be ordering a 24 to 72 hour EEG, where I will stay at Stanford for one to three days on constant monitoring, wired up to a machine and being videotaped. I'm not sure exactly how I'm going to use the restroom during that time, but again, I didn't think to ask ;-). She expects that to take place about a month from now. At that time, they will also most likely do an MRI. She'd like to do a spinal tap at some point, but right now it's too dangerous because of my spasms. We don't really want a needle in my spine while I'm flopping around like a fish out of water. That could be, well, bad.
Oh, Oh, Oh... I forgot to mention! I also get to have Botox treatments! Yep. Apparently Botox is a great treatment for migraines. New boobs AND Botox! Now I just need some kind of condition that requires liposuction and I'll start my new modelling career!
The neurologist also said I can't lay around in bed all day. She said that especially with my recent cancer, laying in bed all day increases my risk of blood clots. I told her that exercising causes me to have spasms and she said that's ok. Do it anyway. I'm actually excited about that one. Two workouts in one. I'll go for a walk, then come home and spasm for twenty minutes and be in super shape in no time! Who knows? Maybe I won't even need that liposuction after all!
So that's our plan for now. Thank you so much to all of you for your prayers and support. We will keep you updated as we find out more.
One of the beautiful things about being seriously ill is that you get a pass on pretty much anything at any time. Perhaps this is just in my case because I have a husband who is so incredibly understanding and supportive. If I feel tired, he encourages me to nap. If I have even the smallest symptom, he encourages me to rest. If I have the energy and desire to do something, he jumps up and makes it happen. I am very blessed.
I had to smile this morning, admittedly amongst the tears streaming down my face at the same time. I woke up around 3am and just really didn't want to go back to bed. One of the biggest challenges for me right now is
that I can't exercise for any length of time. I have very little strength and even less endurance, but this morning I just needed to move. I couldn't bring myself to go lay down yet again. I was plagued with terrible migraines yesterday,
so other than my doctor's appointment in the morning and a brief drive with the family to get out of the house (thank you, Honey, for making that happen!!), I spent the day in bed, and I just really didn't want to go back there, middle of the night or not. So I came into the living room, put on some Jesus Culture and danced. My stamina lasted only about ten minutes, but there I was, in my living room, in my pajamas, in the middle of the night, getting some exercise and crying out to my Jesus at the same time.
The irony of my new life struck me. I've never been a spontaneous person. I used to like every detail of my life very planned out and I've had to let go of that. So if, at 3am, I want to dance, then I'm going to dance.
As I sit here typing, the Jesus Culture song "Freedom" is playing. "If you're tired and thirsty, there is freedom...Freedom reigns in this place. Showers of mercy and grace, falling on every face, there is freedom. Jesus reigns." I love the beauty of that. Amidst all of the pain and heartache of the last three years, I have learned to cry out to God from the depths of my soul. I've learned that this is ok. I've learned that He can handle it. He knows every detail about me anyway, so why do I feel the need to hide anything from Him? If I am tired and thirsty, I have the freedom to come before Him and say: "Lord, I can't do this anymore! Feed me! Satisfy my soul! I'm dry and weary and I need you to carry me for awhile." There is nothing wrong in this. I am sure that God cherishes the honesty of His children and I have found Him faithful to wrap me in His arms and carry me through. There are times when I don't see or feel it right away, but when I look back, He has been there with me every time. Thank you, Lord, for your faithfulness!
I had an appointment with my oncologist this morning. I meet with him every month before I get my Lupron shot. He asked me about my symptoms and then told me that, while my symptoms are not a typical presentation for a brain/spinal metastasis, he would like me to get an MRI to rule out that possibility. He said it's very unlikely, but that it's a box that we need to check. So if Stanford doesn't order that when I go up there next Friday, he will, and he scheduled my next appointment with him in two weeks...on Friday the 13th. Lovely. I'm not superstitious in the least, but there is something about having an appointment to discuss whether my cancer has metsed to my brain on Friday the 13th that just seems...well, eerie...and to be honest, freakin' hilarious! Not sure why, probably because I'm not superstitious, but I do find the timing of the appointment really funny.
As for the likelihood that my cancer has metastasized, I'm trying to be realistic and not freak out. To be honest, there's really nothing I can do about it anyway, so why stress, right? But ever since he said: "It's really unlikely, but it's something we need to check.", I keep flashing back to last November, during my appointment with the gynecologist, when she said: "It doesn't feel like a cancerous lump. I'm pretty sure it's not, but let's check it anyway." Then the ultrasound tech said: "It's not a cyst. It's probably benign, but we need to do a biopsy." Then when I had my biopsy, they told me: "Most of these come back benign. I'm sure it's nothing. You don't have a history of it in your family and you're so young." And then I remember going into the office for the results and being told my results were positive, that I did have cancer. I remember the room spinning and wondering if I was going to lose my hair. Then I remember the surgeon coming out after my mastectomy and telling us he got all the cancer, and then a couple weeks later being told they were wrong and it had metastasized to my lymph nodes. So, no, I don't trust doctors when they say "It's probably nothing.", especially when they want to do a test to go along with their "probably nothing" impression. My oncologist is very conservative when it comes to ordering tests. He didn't do a full body scan on me in the first place because he didn't see a need to and doesn't like to do tests just for the sake of doing tests, so to have him say he wants an MRI from my head to my waist, yeah, it scares me a little, or maybe a lot, depending on the moment.
So many of you have been praying. Please continue to pray. May God's glory shine through, no matter the outcome!
