Sunday, November 1, 2009
October 28 & 29, & November 1, 2009
So I’m trying to type in the car and I realize that I’m not very good at this. I get car sick easily so we’ll see how this goes. And no, I’m not driving!!! But I’ve been getting a lot of folks asking for an update so I thought I’d use my time wisely and try and fill everyone in on the latest. And I’ve realized that many, many of my actual friends (as opposed to facebook “friends” ... no offense) have not one idea what my latest real life status is. The “issue” with my updates is that I like to tell the entire story from beginning to end including as many details as possible so that I don’t mislead. I like to document - and document accurately - because I always put these updates in my journal. This is very time consuming and takes a good amount of energy so I tend to wait, and wait, and wait until I’m emotionally and physically ready to type and think at the same time. Or until I get hounded enough to send out another update. By this time, the updates are so long that you, my faithful readers, need an entire afternoon and a good cup of tea to read the entire thing. Oh well. That brings me to today. Hounded and feeling good enough to think and type. I just don’t really know where to begin but I know this will be a long one. So...choose to read to the end or not. You’ve been forewarned!
From what I remember, my last update was an encouraging one (I don’t feel like re-reading it)....all was going well with the “medical miracle chemo”. Well, this lasted for a little bit and then s-l-o-w-e-d ... w-a-y ... d-o-w-n. I was going in for chemo nearly every Monday and Friday until the 12th of October. Progress was happening but happening like dripping molasses. Discouragement #1. During this time of twice weekly chemo treatments, I had 3 extra doctor visits for “wound care” ... ouch, ouch, ouch ... this was VERY, VERY painful hence becoming discouragement #2 . Now, let’s move on to the newest issue. My hip. We’d known for a while that I had a small tumor in my hip. The chemo appeared to be taking care of this because the pain was lessening. I don’t know what in the world happened but I went from having less pain to BOOM! far more pain. I blew it off for a couple of weeks because I really believed I had done something normal like hurt my muscle or something. I haven’t been able to exercise in months and when the pain started easing up I slowly started exercising (seriously slowly and not make believe slowly). So I really did believe I’d done something “normal”. But, the pain would not go away and actually started getting a lot worse. So bad that it really became a challenge just to walk. This raised concern...fear that I may have fractured my hip so...my doctor ordered an MRI on my hip. We needed to find out what was going on. Um...can we say MASSIVE DISCOURAGEMENT (#3)???!!! Ugh. Ugh. Ugh. I hate scans of all kinds. Why, oh why do you have to be poked with a needle and contaminated with toxins just so “they” can see your insides better? Please. There’s got to be a better way. Sigh.
For weeks I was sliding the slippery slope of deep discouragement and depression and knew I was hitting a critical point but really didn’t realize, at all, how bad I had become. That is, until a certain Sunday - the last Sunday in September - when I was standing oddly alone in the huge hallway of church.
Reed headed to church without me (at my request) because I just didn’t have the energy to move quickly and I didn’t care in the least about being late (not normal). It didn’t even bother me that I went to church with wet hair or sloppy (albeit cute)clothes (not normal). I didn’t even want to go but knew that staying home, on this day, would be worse. I didn’t want to be alone and I didn’t want to be around people. Hmmm. I was pretty bummed when I realized that I had walked into church too late to go unnoticed so that led me to standing awkwardly in the hallway. Well, God being God, wanted me in just that spot at just that moment. He had plans for a specific good friend to come into the hallway at just that point and for a COMPLETELY different reason. She hadn’t even seen me. But when she did, all it took was the touch of her hands to my forearms and her asking how I was doing and the tears began to fall. We were alone in the hallway - which is unusual all on it’s own because our church isn’t exactly small - and I couldn’t get one word out. Not one. Only tears. But this was where God reached in and grabbed me and yanked me out of the pit. This is when I realized I needed to send out - with help - an S.O.S.
A few days later, on a Thursday evening (October 1st), a group of strong praying women circled around me and prayed and prayed and prayed. I was given the freedom to talk openly and explain just how dark things had become for me. It wasn’t good. To be honest, it was a wee bit scary to actually hear myself explain all the turmoil and lies that had been going on in my head. Our society talks so much about “dying with dignity” and “quality of life” and “being a burden on your loved ones/society” and “end of life care” and “why is he/she still hanging on?”, and, and, and, ... It becomes sickeningly easy to begin to believe what you’ve heard instead of what you know to be true. God cherishes life...plain and simple. Life until He chooses to allow it to end...He’s numbered our days. And I believe it’s because of this that the LORD never allowed me to hit bottom. He gave me a promise...the promise that I wouldn’t die from this disease and He wanted me to remember this truth. Not the lies the enemy of life wanted me to hear and believe.
The following Sunday, October 4th, Reed and I were surrounded by our elder and pastor friends and again I (we) was given the opportunity to spill my soul. And again, they prayed and prayed and prayed. The light was spilling through and the darkness was evaporating. The timing was crucial. I could have never handled what the following weeks had to offer had I still been in the pit.
Now, back to the hip MRI story - not hip as in cool. One day as I was sitting in my chair receiving chemo, Dr. Link’s nurse Donna came to give me the results of the MRI. The good news, there was no fracture in sight. The bad news, the cancer was still there but there was not a clear indication of whether or not the tumor had grown (or at least that what’s I was told). I was pretty certain the tumor had grown. The pain was far too bad for any other reason. I had actually hoped for a fracture because that seemed less devastating than cancer. So, where do we go from here? How about radiation? We’ve not done that yet (except the gamma knife...for whatever reason I don’t consider this radiation) so we might as well give it a try. Right? I’ve been trying to avoid radiation so I wasn’t exactly thrilled with this idea. I just love adding more toxic uninvited guests into my body. Sigh. Discouragement #4.
Dr. Duma, my neurologist, recommended an oncology radiologist who uses a similar procedure as the gamma knife. It’s called cyber knife. The hopes were that if I went to her (let me introduce Dr. Eva Lean), she could zap the cancer out of my hip as quickly as Dr. Duma was able to zap the cancer out of my brain. Sadly, it just wasn’t that simple.
On October 13th, the morning following an afternoon chemo treatment, we went for a consult with Dr. Lean. After reviewing my MRI, she let me know that the tumor in my hip was only part of the problem. I also have a significant tumor in the neck of my femur. The cyber knife is for smaller tumors so...this meant I needed the regular radiation. Dr. Lean also made it incredibly clear that my hip and femur were, at this point, as fragile as porcelain. Discouragement #5.
Before Dr. Lean would finalize her recommended radiation protocol, she wanted to see the results of the PET/CT scans I was having the next day, October 14th. More scans...discouragement #6. Did you know that I hate scans? Just curious. I wasn’t expecting good results. She asked if we could overnight a copy of the scans to her so she could review them and let us know as soon as possible. She was going to be out of town for a week and a half and didn’t want to leave us hanging. Reed and I were floored with this doctor. She is by far the most compassionate doctor I have (and Dr. Link is definitely NOT lacking in the compassionate department). She is spunky, smart, and incredibly easy to be around. On our first visit, she spent an hour and a half with us. Amazing. This weighed heavily into our decision to want to continue to see her for treatment. The downfall...she’s an hour plus away from our house.
Scan day...fairly uneventful. The normal go to the nurses you trust to have your line started, walk (hobble) next door to the scan offices, fill out paper work AGAIN, drink pukey contrast gunk, wait your turn, have a radioactive dye shot into your arm, lay around in a dark room by yourself for an hour, drink more pukey contrast gunk, go to the scan machine and let them take pictures of your body, head home, stop and eat a Del Taco burrito and iced tea (yes, this is true), go home and try and act like you can get something done that afternoon, be incredibly thankful that someone is bringing dinner!!
The next couple of days I was expecting calls from Dr. Link’s office and Dr. Lean’s. I was looking forward to much celebrating of my birthday weekend (October 17th for future reference) so I really didn’t care if I heard from either. As it turned out, I only heard from Dr. Link’s with the results of the scans but I was supposed to receive a follow-up call to let me know whether they wanted me to proceed with radiation/radiation & chemo/just chemo. By the following Wednesday, October 21st I hadn’t received a follow-up call from Dr. Link and I still hadn’t heard from Dr. Lean. I was planning on using this day to make phone calls and get things done. Well, phones calls were made and what I found out turned a nice calm day into craziness. “Someone” from Dr. Link’s office was supposed to call me and failed to follow through. He wanted me to begin radiation as soon as possible so that healing could begin on my leg (fear of fracture weighed heavily in this decision).
As for Dr. Lean, she had been checking daily for the overnight envelope and still hadn’t received it...or so she thought. Reed tracked it and found out that it was in her office somewhere...so and so had signed for it. Ummm...she said she’d have it on her desk within 15 minutes. Both of these doctor’s offices run like very well oiled machines so it was a bit “funny” that they both “happened” to drop the ball at the same time.
As soon as Dr. Lean reviewed the scans, she called me back. Her hope was that I would be able to get to her office by noon that day so they could do all of the pre-radiation stuff in order for me to begin radiation by the next Monday. It was 9:45. I was still in my jammies, hadn’t eaten breakfast or prepared Elijah’s school work. Remember, Dr. Lean is far away from my house - 62 miles. I HAD to leave by 10:30 to make sure I got there in time. I had 45 minutes. Dr. Lean had to leave at 1:00 and would be gone for a week and a half. Her office was going to work through lunch so that I could begin treatment a week sooner.
Oh my....I am getting overwhelmed with my own story. Even though I’m telling so much of it, there is much that I have left out so I’m hoping this all makes sense.
Back to the story...I haven’t driven myself to an appointment in a very long time. The MRI scan a few weeks back and that’s it in many, many months. Chemo wigs the brain out so it’s dangerous for me to drive plus, I really dislike sitting alone during treatment. I needed to drive to this appointment by myself. Ben was FINALLY being released from the doctor so he could have an active life again and I wasn’t about to reschedule that appointment. Reed was planning on taking him to his appointment all along but didn’t relish the idea of me driving to Vista by myself. It was actually a good day for me to drive because I’d slept well the night prior. Plus, my sister only lives a few miles from Dr. Lean and she was able to meet me so that I wouldn’t have to be at my appointment alone. I made it with 10 minutes to spare...and Ben was cleared.
I met with Dr. Lean to go over all that needs to be gone over, was scanned WITHOUT needles, and tattooed (boo)in prep for Monday’s radiation treatment. Then, Heather and I went to lunch. Before we left though, one of the nurses came outside and asked me to wait. I asked if she wanted me to come back inside and she said “that depends on where you want your hug”. Well, I thought she was talking about hugging Heather goodbye so I was really confused. I didn’t think it should matter to her where I hugged my sister goodbye. But, she was talking about the hug I was about to receive from Dr. Lean. Dr. Lean came running outside to give me, and Heather, a hug goodbye. She was not going to be around for my first week of treatment but wanted to make sure I knew she was there for me. Heather totally agreed that this doctor is worth the drive.
Radiation began this past Monday, October 26th and will continue for the next two weeks. It is a daily treatment, Monday to Friday, with weekends off. A total of 15 treatments. I will be back on a chemo schedule sometime but I’m just not sure when. Most of the results of my scans were not good. The cancer is still gone in my lungs and liver. The original cancer sight (the wound area) has gone down a teeny bit in width and some in depth but mostly is the same. My last brain MRI showed “no evidence of disease (NED)” so that is really, really good. However, as I’ve already explained, my left hip and femur neck are in bad shape. I have new spots in several areas...my right hip, 6th rib, sacrum, and T9. The T9 is a spot that has come and gone and come back again. Dr. Lean did indicate that the cyber knife can be used on this spot and actually recommends it. We’ll see. One thing at a time.
Where am I today? Tired. The pain in my hip area has lessened somewhat which is really exciting. But the rest of my leg hurts worse than it did?! Not sure what this is about. Maybe just a muscle thing but not sure. Plus, as the pain lessens in my leg, I can feel the other spots more. Discouragement #7.
Where am I emotionally? Today? Good. A week ago was a vastly different story. I was having some serious anxiety about going through radiation. I was far from nice to my family and plummeted even more when Reed brought home a walking stick for me to use to keep my balance and help support my weak leg. It’s a really cool stick but the reality of needing one (and I do need one) threw me over the edge. Again, I was in bad shape but desperately trying not to hit bottom. Again, the LORD intervened. Again it was with friends. But this time, instead of massive prayer, it was with scheduled and unscheduled massive fun stuff. The kind that takes your brain far away from your reality. Because of this and because God spoke to me in some random ways, I was able to “easily” survive my first week of radiation. As one friend explained, God is truly showing me how those in my life have become the arms and legs of Christ. I am not alone.
What am I learning? Oh so very much. God is stripping me. I could call it refining because that seems more biblical but in reality it feels like stripping because I have never felt more vulnerable in all my life. I am being stripped of nearly all that has defined me. All that I have prided myself on (yes, prided). I once was physically strong. That’s going. I once was completely independent and “in control”. Now I must rely on others to survive more than just doctor visits. I once was agile and fit. I now can no longer walk a block without effort and must use my walking stick for more than a handful of steps. I’ve been forced to expose more of myself in front of strangers (medical staff) than a modest person like me cares to endure. The hips that once carried the weight of the life of my children now carry a deadly disease. Bizarre. It all hurts. I’m being massively humbled...I even went to a USC game in a wheelchair. It’s surreal and it’s embarrassing. Meals are being provided, my house is being cleaned, my laundry is being done. All things that identify me as a caregiver, wife, mother. I highly identify myself in this role. Stripped.
I am also learning that God often shows His intimacy in the void of communication. Over the last year, I’ve not heard from God much. He’s been there to carry me and love me but He’s been silent. I’ve heard a couple of things recently, one being something that was almost comical to me. I was lying on the radiation bed preparing for my first treatment - so anxious and hating the fact that radiation was going into my body to help my body heal. Seems so hypocritical. I was watching the huge automated arms move around me and calming myself by looking at the fake sky scene with the fake shooting star. It was then that God reminded me that He created radiation and because of this it was “natural”. Wow. Kind of weird but I couldn’t deny the truth. An immediate peace came over me and I survived the first day.
Something else He said to me was quite loud and clear. It was a resounding re-confirmation of the promise of healing. I know I will not die of this disease. I don’t know what this means but I know I will not die from it...I will live to declare the works of the LORD. These truths give me the strength I need to wake up each morning. My specific prayer today is that I would have the courage to face the realities of what I daily endure and the confidence to stay firmly rooted in the hope of the promises I’ve received. I’m pretty confident that more stripping is coming and I know this is going to be another big challenge. Hopefully without a pit. I’m not excited about this but there will be a day when I can look back and be grateful for what the LORD has allowed me to endure in order to somehow point others towards Him.
I am grateful that the LORD is trusting me enough right now to connect some puzzle pieces. He is also showing me how much my life is truly paralleling the woman who touched Jesus’ cloak. “Daughter, you took a risk of faith and now you’re healed and whole. Live well, live blessed be healed of your plague.” Mark 5:34 This update is not the time for explaining the parallels but I have a feeling that day will come.
Really good things have been happening amongst all of this. Reed has begun a clothing line and God has been opening the doors quickly and widely. We just keep marching through. So far, it has been well received and has enabled him the opportunity to hang with me through all of this. If you ever see Arlington in PacSun, go ahead a buy it...it’s Reed’s. It’s not there yet but will be soon. Reed’s also been able to be more available for the boys. The boys are doing great and school is going shockingly well. So, even though we have this major disruption in our lives, there is calm surrounding us. Calm that can only be explained by God’s presence.
Goodnight. Much love,