Tuesday, December 1, 2009

November 30, 2009

Monday, November 30, 2009

Radiation is officially over. Man oh man is it ever so much easier than chemo!!!! So what’s next? On Wednesday, November 18th, we met with Dr. Link to see what his next move would be. This is what he said...” I have one more thing I can try before I let nature take its course.” That one more thing is an oral chemo that is evidently a “miracle” chemo for a very specific form of leukemia and not a chemo for breast cancer. No, I don’t have leukemia but for some reason “my” cancer shows strong evidence of responding to this drug. However, like all the other regimens I’ve been on, this one also needs to be cocktailed. Oh, and this cocktail has never been used on an actual breast cancer patient before. It’s only been tested in a tube and it’s in this test tube that things looked promising for breast cancer patients like me. Do you feel like I’m just telling you the same story over and over again? I do.

So, this is what the doc wants me to do. I will take the oral chemo (Gleevec) daily and then once a week I will have the other chemo (Navalbine) administered via I.V. I will also be receiving a once a month I.V. dosage of Zometa that is supposed to help with bone healing. The first dosage of the Zometa literally put me to sleep for about 36 hours. It was weird. One of the side effects was fatigue...guess so. As it stands right now, I am scheduled to begin both treatments next Monday, a week from today. This new regimen will continue until it stops :)! Very likely it will continue for 18 weeks :/. That’s at least the best guessing we can do right now. It’s all going to depend on my body.

Crazy as it may seem, when the doctor made the “let nature take its course” comment, I was oddly relieved. I felt like saying, let’s get on with this and get it over with. I’m not being a pessimist but I feel like this new regimen will work for a bit and then my body will once again build up a resistance to the drugs making it ineffective. And I’ll be left to once again detox and try to get my body back to some sort of normal. This seems to be my new normal. At least I have hair.

I think that’s all I have to share for now. Until next time...Angela

P.S. Thanksgiving was AMAZING!!!

Sunday, November 1, 2009

3,664 words

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,

Saturday, August 8, 2009

News of the Day

August 8, 2009

Hi friends...

Just wanted to share the good news. Yesterday I went in for treatment. Pictures and measurements were taken. A week ago Friday (when we first began the "miracle" treatment) the measurements of the wound were 6.5 cm x 3.5 cm. Yesterday, the measurements were 5.8 cm x 3.3 cm! The wound is shrinking!! This is critical because the wound is the site where the original tumor began. It is the indicator of whether or not the treatment is working throughout my entire body. There are some other indicators too such as far less pain in my hip. My medical staff is elated.

Well...that's about it. Just wanted to share the good news. Thanks so very much for your prayers. I know with all my heart that they are carrying me through all of this.


Sunday, August 2, 2009


August 2, 2009

Hi all...

Just a quick note to let you all know the latest (if you haven't heard already). Friday morning I went in for treatment without knowing which direction my doctor was choosing to go. I was completely at peace and completely confident of whatever decision he chose to make. When I arrived, it was CLEAR that he had chosen the path of medical history!!! I had to approve it of course (there could be an insurance glitch) but I was 100% positive that this was the right choice. Reed was too. So, I signed the approval and to be honest, I was really excited. My medical team was really excited too...we all believe it's going to work. My nurse wanted my approval to document, with pictures and measurements, the damage that has taken place. She said that they would like to write a paper afterward (assuming it goes in the direction we all believe) and I said "that's OK because I want to write a book! So you can write your paper and I'll write my book!" That's fair right? Anyway, we all laughed.

So this is what this next month look likes for me. I will be having treatment on nearly every Monday and Friday morning for the month of August. Eight treatments in all. So far, I have had very few side effects so I think I should be able to handle it "OK". I've not had any nausea, weird food issues, hair loss, etc. Really the only issue that has hit hard is fatigue making my energy level REALLY low. With my last treatment, I dealt a lot with mental fogginess and nausea. Not this time at all. This makes it so much easier to continue "life as normal" ... with an asterisk. I have to do much of this life from my couch. I must say though that we are being very well taken care. Meals are coming on a regular basis, lots of friends are accompanying me to treatments so that Reed can focus on work, and prayers are constant and VERY much felt.

As for the rest of the family, Cambron moves out in 3 weeks and into the dorms at school so I know that there will be some strong emotions filtering through the house. His presence will really be missed but we are super excited for his new adventure. Oh...his shoulder is healing well too!! He and Ben are still in therapy but both are doing really well. Ben was released and allowed to jog and jump rope but still has to stay out of the ocean. Nothing new to report with Abe, Peter or Eli...WOOHOO!!

I need to organize and prepare for year 14 of homeschooling...deep breath. Luckily, I can do this from the couch. Then there's football...it looks really different for us this year so we get a bit of a break but, fall ball has begun. Reed is doing GREAT. He's super busy and the opportunities look quite promising. We are getting excited for what's going on with him. It's been fun to watch.

That's about all. This isn't the smoothest flowing email but I think you get what I'm trying to say...right?

Until next time which could be a while...many hugs.


PS...duh!!! I didn't give you my treatment dates!!! Here they are...

Monday, August 2 @ 10:15
Friday, August 7 @ 9:45
Monday, August 10 @ 10:00
Friday, August 14 @ 10:15
Friday, August 21 @ 10:45
Monday, August 24 @ 10:15
Friday, August 28 @ 10:00
Monday, August 31 @10:15

I don't know about September.

Monday, July 20, 2009

Today's Doctor Visit

July 20, 2009

Hello friends! Just wanted you to know that I left my doctor's appointment this afternoon giddy!!! Yes GIDDY!! Have you ever heard me say that?? I didn't think so. The docudrama of this crazy adventure just keeps getting more and more interesting but this time the spin is really exciting to me (and Reed) and possibly life changing for my doctor and a lot of women. So here's the scoop from my visit.

For whatever reason, today when the nurse checked my blood pressure, it was really high. This is super unusual for me because my blood pressure tends to be low. It also completely surprised me because I wasn't the slightest bit nervous. Truthfully, I was so at peace that I was even shocking myself. The entire day today and actually even yesterday, I have felt that this visit was going to be good. I wasn't the least bit worried. In contrast, the LORD very often forewarns me or often I feel an impending doom whenever the news is going to be bad. I felt good going in and, like I said, giddy when I left.

Reed and I sat with Dr. Link in his office while he finished up reviewing some of my recent medical results. He looks up at me with his cute smirk and makes some remark about not knowing what to do with me. He wanted to know how I fared after they released me last Friday so we filled him in. He just shook his head in bewilderment because he really was perplexed. Never had they had a patient that reacted the way I did to that type of chemo. He made a point of letting me know that he believes me in regards to what happened 11 years ago. No more questions. I want to tell you that my doctor is amazing and I would highly recommend him to any woman. He's gentle and wise and has most definitely earned all the accolades on his office wall. So when he's perplexed it's kind of amusing. Anyway, if you remember, a few weeks ago I had a special type of biopsy performed that would indicate what types of chemos would work best on "my" type of breast cancer. I don't know the medical jargon but in layman's terms, the cancer sample is tested for varying types of reactions to varying types of chemo. Some genetic testing is also done. Make sense?? I have all the paperwork if anybody really wants to read it :o) but that about sums it up. The family of chemos that works the very best on "my" cancer is one we have now confirmed I am highly allergic too and can literally kill me. This is the largest segment of chemos available for overall breast cancer treatment. There is a possible way around the awful side effects of these chemos but it involves 3 days of pre-medicating with steroids and then having a once a week treatment for 12 weeks. Ummm...I'm thinking no. Actually, my doctor is thinking no too. Can you imagine, 3 days of steroids and then a chemo that causes you to be sick for ?? who knows and then you get the thrill and joy of watching your hair fall out...ohhhh...it's just a mess. Oh yeah, and I'd get to repeat this cycle every week for 12 weeks. There's got to be a better way, right? Well, there may just be.

Another chemo that showed good results with my biopsy is one that is actually used for multi-myeloma cancer. It has never been used as a treatment for breast cancer because it hasn't worked where tested. And yes, my doctor is certain that the cancer I have is breast cancer. However, for me, because I'm so wonderfully unique - with a capital U - it actually shows positive response when tested with the chemo used for multi-myeloma. The treatment is far less toxic than the ones I’m allergic to which means far, far fewer side effects and very likely no hair loss. This is a big deal because I believe that God also told me that I wouldn’t lose my hair.

Now, it may not seem like a big deal that a treatment for multi-myeloma is possibly a treatment for breast cancer because it's just another chemo right? But in reality, it's huge. As Dr. Link put it, if this treatment were to work on me, we would make medical history!! These were his words and he meant it LITERALLY. Absolutely NO exaggeration. Who knows the realm of possibilities behind this statement. Seriously, only God does. So very many women could be helped...it just boggles my mind. But the even more amazing statement from Dr. Link was..."maybe this is how God is planning on working it out." He was so cute because he couldn't look Reed and I in the eyes but he wants to believe that God is going to work it out this way. See why I was giddy?!!??!!! I mean seriously. Since day one, we've been so straight forward with Dr. Link and have told him numerous times that God told me He is going to heal me. I really believe Dr. Link is listening and what's even better, I believe he's believing. If I'm allowed to go through this to lead my doctor to the LORD and help other breast cancer patients, wow...I don't even know what to say to that. The LORD would be so glorified because my doctor would know why it happened. There would be no denying it.

What's actually shocking to me is that for the last 4 1/2 years of this 11 year journey, I have BEGGED and BEGGED and BEGGED God for a miracle without the use of medicine. I am actually at a point now where if God chooses for the healing to come from this latest turn of events, I would be thrilled. The look on my doctor's face today was priceless. I could "easily" endure what's left of my treatments if the outcome would actually be what Dr. Link believes could happen and if it would open his eyes to the one true Physician. What an honor to be a part of that. I'm sure it goes without saying that I would take a non-medical miracle in a heartbeat and I won’t stop believing that this could happen but I have NEVER been at a point where I've been OK with chemo. I've done it out of obedience but that's about it.

So, what does this mean for me. My doctor wants more time to think about what specifically should be done. I would LOVE prayer for wisdom for him in regards to this decision. It’s a really big one. He needs time to consult with some other doctors and just have time to figure it all out. He has already spent several hours pondering over what to do so I really feel he would love the prayer support, even if he never knows.

If we proceed with the experimental treatment, that will mean treatment twice a week for 4 weeks. It will be a cocktail taken along with the other chemo I am still doing. The one I'm not allergic to. My next appointment is scheduled for July 31st at 9:30. The only thing I really don't know is what my treatment will look like.

Well...I think that's all. It's so nice to feel light hearted again. Your continued prayer is so very much needed. Please don't stop. Thank you so much.

Big hugs!!!

Saturday, July 18, 2009

Back to the drawing board

July 17th or 18th?, 2009 it's the middle of the night between Friday and Saturday so I guess technically it's the 18th.

It's the middle of the night and I can't sleep so I thought I should at least journal to get the head stuff out through my fingertips. But, I also knew that I wanted to let you guys know what happened today so I've decided to allow my email to you to sort of be a journal entry that way I "kill two birds..." Now, don't get too excited because I seriously doubt I will share quite like how I would if this was a true journal entry. But, you never know...it is currently 2:00 a.m.

This morning (well Friday morning...it's confusing when it's the middle of the night), at 9:30 I went in for my new chemo regimen. I had an overwhelming peace all morning and slept very well last night (Thursday night). This was surprising to me because just a few days ago...on Monday...I was having serious fear and anxiety about going in this week. My treatment hadn't been scheduled prior to our vacation because I couldn't seem to get through to the doctor. In hind sight, this was very much the way God wanted it. I wasn't supposed to dwell on the date of chemo while I was on our little trip. On Monday, I knew I needed to call the doctor. They had called to check on me while we were gone but the area we were staying in didn't have cell reception so I couldn't call them back. When I talked to my nurse, I was brutally honest about how I was feeling and the anxiety I was having. We talked it all out and she kept reassuring me that I was going to be fine and that this treatment, even though it's in the same family of the one I had such a horrible reaction to 11 years ago, was far gentler. I was going to be fine. "OK", I said and proceeded to make my appointment. They couldn't get me in on Thursday the 16th so I went today (Friday).

My chemo regimen is always some sort of a cocktail. This time was no different. The first chemo they gave to me this morning went according to plan. I had never been on this type so I really didn't know what to expect and really, I still don't because most side effects don't take place within the first 24 hours. They occur on days 2,3,4... First chemo over, time for the second one. They began the drip and WHOA!!! what the heck's happening??? Immediately my body began reacting in a bad way but totally different than 11 years ago so I was confused. Really confused. So I kind of just sat there trying to figure it out. I was finishing up a pb&j and thought that I must have swallowed wrong because all of the sudden I couldn't breathe. So, I kept swallowing and drinking water and nope, that was it. Then I began to get really hot - actually my face began to feel like it was on fire - so I took the heating pad off of my lap to see if that would cool me down (I was using it to get warm because before this I was chilled). Nope, this wasn't it and my breathing was getting worse. Finally I realized that something wasn't right but I was still hesitant. Of course, Reed had stepped out to run a quick errand and my nurse, who is always very attentive, happened to be busy at the desk so I didn't have someone right there with me. Still not sure if I was imagining things, I got up and walked over to the desk. But when my nurse glanced up and saw me and had a look of fear on her face, I knew my concerns were legit. She began gently barking orders..."go back and sit down"..."take deep breaths"..."keep taking deep breaths"...as she scurried over to me to turn off the chemo drip and then scurried to get some steroids to put in my line so that I could breathe again. The steroids worked quickly and my breathing eased up. It took a while longer for my face to cool down and for the massive headache caused by all of this to go away but it did. Then my doctor and his nurse came in and were literally tongue tied but not me. I said, "I told you so!" And they said, "Yes you did!". In all their years of practice, they'd NEVER seen anyone react to this chemo like I did. My chemo nurse told me, "when you were saying that you were allergic to this I thought you just meant you didn't tolerate it well. You REALLY meant allergic!" Yes I did. And now they know.

They monitored me for a while and because I was having other allergy reactions, gave me some Benadryl with instructions to take it every 3 hours. I've only taken it once more. Oh well. Unlike most people, Benadryl does not cause drowsiness for me. It keeps me awake. I was released to go but for two-ish hours afterward I had some other issues. I got the shakes and chills really bad as we were leaving so Reed wrapped me in his jacket to keep me warm. The shakes got so bad that I had to lay down in the back seat of our truck and asked Reed to please not turn on the air. So, we drove home with the windows up and air off because I couldn't get warm or stop shaking. Poor Reed. It was at least 85 outside - and yes, I know that's not hot for Texas or Arizona but here it's hot...especially in a closed up vehicle. Anyway, I was so weak and incoherent by the time we got home that Reed had to carry me into the house. I slept off the weirdness and have done pretty well the rest of the day. Eating and drinking far better and more normal than in the past post-treatment. I'll see what tomorrow and the days following hold.

What's next? My doctor told me that he needs to go back to the drawing board and come up with a new game plan. Evidently (or obviously?), I cannot have any chemos from this family because I will be allergic to all of them. I go into his office on Monday afternoon to talk about my options...again.

Earlier I alluded to the peace that I had today. I know that there is only one reason the peace was so strong. Prayer. The amount of prayer support I've had this week has been overwhelming and humbling. Some from a distance and some very close and personal. I feel loads of support and encouragement with the encouragement coming from unusual scenarios that are undeniably from God. I have worked through my sadness from the last email and am actually in a really good spot at this moment. Reed and I actually look at what happened today as a good thing. We see God's hand all over this and are curious as to what is around the corner. The LORD is using His body to get us through this. He is using my sweet friend Laney to orchestrate the 40 day prayer and fast and He's using all those who signed up and are making a sacrifice (big thank you's). He is giving special friends specific scripture to send to me at exactly the right moment to prepare for what's to happen next. He's given 2 friends the exact same scripture to pray over me with neither knowing ahead of time that the other had been given that scripture. It is a scripture that I can NOW fully understand and after this morning is NOW fully relevant. He's recently used a handful of intimate friends as sounding boards and confidants. He's given a revelation/vision (I'm not really sure what to call it) to another friend that was confirmed and incredibly encouraging. And He's given me the privilege to be anointed and prayed over by one of my dearest friends while holding her newborn baby. THIS is why I had a peace today and THIS is why Reed and I were literally giggling with excitement earlier tonight. We are preparing for a miracle. It feels really good to have some medical options taken away from me. I am so eager to see God's hand in this but in a way that is undeniably God. I'm not sure what that will mean in the end of this journey but for today, I am in a good spot and feeling encouraged and hopeful. I'm the woman in the Bible who's having her options taken away from her and so she touches Jesus' cloak and is healed. That is the verse hanging on my wall. "Daughter, you took a risk of faith and now you are healed and whole. Live well, live blessed, be healed of your plague." I'm getting excited!!!

OK...it's now 3:40. Guess I really should go to bed. Plus, the battery is nearly dead in my computer and I don't feel like going downstairs to get the cords. Goodnight. I hope all this rambling makes sense!!


Thursday, July 2, 2009

A day in the life of the Robinson family...actually a week.

July 2, 2009

My heart is pretty much in my stomach as I write this update. I wanted to get it out sooner but "things" just kept happening that have slowed my progress. Plus, I'm tired and it takes a lot of energy to put my thoughts into words and share them.

The really good news is that both Cam and Ben are out of their slings and on their way to complete healing. And, as of Father's Day, Peter is off of crutches. So, we can now walk down a sidewalk and not look like we've just come from a car wreck. We were literally asked that at one point. Thank you for your prayers in regards to the boys' injuries.

Now for more of the story. A week ago today, I received the results of my scans, biopsy, and MRI. None of the news came as any shock to me because I am so in tune with my body that I can feel the slightest changes. The good news of the visit was that there is no cancer in my liver or brain. But the bad news is that the cancer has grown in my hip, breast, and there are two new spots in my lungs. Biopsy results showed that the cancer I'm dealing with is very responsive to several different chemo options so my doctor wants to switch it up. It appears that my body is building up a slight resistance to the treatment I am currently doing. The biopsy results showed that the cancer is still responsive to the current chemo but not as much as other treatments and not as much as it once was. So, this is where I can become freaked out if I think about it too much. The chemo my doc wants to put me on is the same stuff I was on 11 years ago. For those who don't know, I was HIGHLY allergic to that chemo and nothing could be done to control the allergic reaction. My side effects were insanely horrible and I dropped to 87 pounds. I was supposed to complete 4 treatments and I could only get through 2. My current doctor is not the same one I had then. Dr. Link knew my side effects were bad but I had never explained in detail just how bad they really were. He was shocked. The difference with this version of that extra yucky chemo is that it is coated in lipids and is "supposed" to only affect the cancer cells. In theory, the lipids cause the treatment to be be gentler. The cancer likes the lipids (fat) so they open up and eat the chemo. The big problem with this theory as a whole is that if it's only getting to the cancer cells, then why will my hair fall out??!!! Yep...up until now, I've been able to keep my "glorious locks". However, this treatment will cause hair loss. And trust me, hair is NOT overrated (sorry to all my bald guy friends but I've gone that route once and it was more horrifying than many things I've had to deal with). I like my hair...a lot...and I really don't have any desire to lose it. Dr. Link wants me to have 12 treatments...in 12 weeks!!!! They are supposed to be "mild" doses and "shouldn't" affect my life too much but...sorry for my skepticism but I just find this hard to believe. I get affected by the contrast dye that's put in my body for the scans and MRI. I'm more or less wiped out for an entire day after that so I have a super hard time believing that this is going to be "gentle". Ugh.

Anyway, I really wish this was the end of my email and I could just tell you the dates treatment will begin and end but I don't have that information yet. We have a little vacation planned for next week and Dr. Link really wants us to go on that before I come back in. So we are. The day I will most likely begin treatment is Thursday, July 16th...assuming the LORD doesn't intervene with a supernatural healing. I'm still hoping and BEGGING!!!! Oh am I begging. Sigh. I will give you the dates as soon as I know them.

So, here's the rest of the story. And, this is the reason my heart is in my stomach. This past Monday, June 29th Reed was laid off at Hurley. This came as an enormous shock because Reed was one of those rare employees that no matter what they gave him to do, he excelled in it and was continuously promoted because of it. He has a knack for being able to put together really good teams and getting them to run so efficiently that the departments could virtually run themselves. Hurley - like so many companies - is restructuring and has been for several months so layoffs have not been that uncommon. Even knowing this, we were still surprised that he was one that was chosen for a recent layoff. But completely trust that the LORD is in control. Without getting too specific, please know that Hurley is taking care of us and that we are not out insurance. Reed's had several little fires going on on the side for a while and my prayer is that the LORD will allow one of these fires to grow and flourish so that he can truly be self-employed. That has been Reed's forever dream. He's massively talented and has an incredible reputation in the industry so, selfishly speaking, I think it's time that God allows his dream of being a successful entrepreneur to come true. For me, I'm just really sad because I really like the people at Hurley and it's always been a super easy brand for me to get behind because I genuinely believe in it. I still do. That is why my heart is in my stomach. It makes me really, really really sad. And geez...really? One more thing? Thankfully (?), I had an enormous breakdown at church Saturday night where I was able to release a lot. If this hadn't have occurred, no telling how I would have reacted Monday.

So, even with all of this said, I'm not feeling depressed, desperate, scared, etc. but I am feeling numb and tired and sad. Can you be numb and sad at the same time? Well, I am so I guess you can. Or maybe I've just been given so much grace for this season that I'm just OK. I don't know and I don't have any need to figure it out right now. But you guys can analyze me if you want.
Well, I think I'm done. Ben is nearly done with therapy so I need to close up anyway. It's a weird life when you actually look forward to taking your son to therapy because it's a nice quiet and safe place to be but yet you're actually getting something done. Oh well. That's my life...a day in the life of the Robinson family :o)! And that's our week.

Many hugs and so very, very much appreciation.

Monday, June 15, 2009

The last two months...

June 15, 2009


I didn't realize how long it had been since my last update until I sat down to type this and tried to think through everything that I needed to update you on. The last we spoke, I had asked for prayer in regards to our zany weeks that were coming up. We had an amazing prayer night at our house Sunday, April 19th (our 23rd anniversary) where over 40 people showed up to pray. I also know that there were people literally all over the country praying at the same time for us. It was powerful AND fun. I know that Reed updated you on my gamma knife procedure and Ben's surgery. So here's the rest of the story...

Like my procedure and Ben's surgery, Cam's surgery went very well also (and he actually did turn 18). But 4 days prior to Cam's surgery - on Mother's Day - Peter's toes were hit by a swinging sledge hammer and two were broken...one needed to be reset. Ugh. So, we had two guys in large slings and one on crutches. We've bought a lot of ice in the last couple of months. The boys are doing well and on the mend. Peter realized yesterday that he broke his toes on Mother's Day and he'll get to take the bandages off on Father's Day. He was pretty excited about that. Ben is out of his sling as of a few days ago. He began therapy shortly after surgery and will continue for the next 4 or 5 months. Cam won't get out of his sling for a couple more weeks and then will begin his therapy. Peter doesn't have therapy!

Ok, now for the part about me. My last treatment was on May 28th. I was incredibly emotional and agitated before I went in and I just couldn't calm down. My nurse even commented that my heart was racing...which is not normal for me. I was incredibly tired that day because of all the recent events and trying to finish out this school year so I just chalked it up to that. I should know me better by now so I should have realized that I was feeling the oppression from what was to come. During my exam, my doctor made it clear that he was not at all happy with the progress (or lack there of) that he was seeing. He uses the wound I have as a gauge for how well I'm reacting to the treatment. Before the Thanksgiving and Christmas chemo break, the wound was almost 100% closed up. It has now grown to roughly the size of a quarter. This leads to the next part of my journey.

My doctor cancelled my treatment for this month and instead wants me to have some tests run. On Wednesday, June 17th I will have a biopsy and right after that I will have CT/PET scans. The biopsy will be sent to a "special" lab in Arizona. Tests will be run of it to try and figure out what chemo regime will be the best for me. The tests will show what the cancer I have responds to the best. I will also have an MRI on my brain on June 23rd. The amount of fear I have dealt with since my last treatment has been enormous. I'm actually not nearly as afraid of the cancer as I am of the needles, the chemo, and the side effects. These things cause much fear in me and I daily work on keeping that fear away. I will get the results from the biopsy and scans on June 25th. I don't know about the MRI.

On the flip side of all of this, Cam and Abe will be officially graduating this week and we will be celebrating this Sunday with a party...yes on Father's Day. I have made many, many, many errors over the last several months and one of them was not realizing that I planned a graduation party on Father's Day. Oh well. Currently, I am in a constant state of raw emotions because of the "full" life I am leading right now. I'm trying really hard not to beat myself up for all the mistakes I've made and I am trying to give myself far more grace than I ever have because of being drugged for much of the time over the last 11 months. This is very hard for me because I simply do not like to make mistakes. I've had some doozies so it's really frustrating. Wow...I really went off on a rabbit trail there. Again, oh well.

As for the graduation and party...a couple of my friends "ambushed" me in the hallways of church and decided they were going to help me party plan. They've been tremendous and it's been an enormous relief. After 13 years of schooling these 2 boys, it's very surreal and emotional to let go and not be responsible for their "proper education" anymore. It was very important to me to forbid the events of my recent news to hinder celebrating this mile stone. This is as much for me as it is for the boys. I need to celebrate. Next month it will be 11 years that I have been dealing with cancer. Eleven of my thirteen years of schooling have been "complicated" by this crazy journey. These days I get easily overwhelmed by all the memories...all the good and all the hard. So...I need to celebrate. This is an area of my life that does not come naturally in the tiniest degree.

So here I sit feeling like I've just written a journal entry. It's times like these that it's abundantly clear that we are not in control of anything in our lives. Even though we so often believe the opposite. Life on earth is full of suffering. Some of us seem to have more going on in the suffering department than others but we all suffer with something. I just "happened" to read this in my quiet time this morning after screaming at God with my voice and screaming at God in my journal...it comes from "Streams in the Desert".

God has made me fruitful in the land of my suffering. (Genesis 41:52)

A poet stands by the window watching a summer shower. It is a fierce downpour, beating and pounding the earth. But the poet, in his mind’s eye, sees more than a rain shower falling. He sees a myriad of lovely flowers raining down, soon breaking forth from the the freshly watered earth, and filling it with their matchless beauty and fragrance. And so he sings:

It isn’t raining rain to me - it’s raining daffodils;
In every dripping drop I see wildflowers upon the hills.
A cloud of gray engulfs the day, and overwhelms the town;
It isn’t raining rain to me - it’s raining roses down.

Perhaps you are undergoing some trial as God’s child, and you are saying to Him, “O God, it is raining very hard on me tonight, and this test seems beyond my power to endure. Disappointments are pouring in, washing away and utterly defeating my chosen plans. My trembling heart is grieved and is cowering at the intensity of my suffering. Surely the rains of affliction are beating down upon my soul.
Dear friends, you are completely mistaken. God is not raining rain on you - He is raining blessings. If you will only believe your Father’s Word, you will realize that springing up beneath the pounding rain are spiritual flowers. And they are more beautiful and fragrant than those that ever grew before in your stormless and suffering-free life.
You can see the rain, but can you also see the flowers? You are suffering through these tests, but know that God sees sweet flowers of faith springing up in your life beneath these very trials. You try to escape the pain, yet God sees tender compassion for other sufferers finding birth in your soul. Your heart winces at the pain of heavy grief, but God sees the sorrow deepening and enriching your life.
No, my friends, it is not raining afflictions on you. It is raining tenderness, love, compassion, patience, and a thousand other flowers and fruits of the blessed Holy Spirit. And they are bringing to your life spiritual enrichment that all the prosperity and ease of this world could never produce in you innermost being.

I don't at all feel like a flower or feel like flowers are growing around me or that I'm fruitful but I do know that it doesn't really matter how I "feel" when God is at work. He cares about how I feel and He cares about all the things that I am bothered with so I know that He listened to my ranting this morning but I also know He cares a ton about those around me and whether or not what I'm dealing with will spread His truths or cause people to turn away from Him. I will do my human best to not do something that will turn others away from Him in the midst of this journey but it certainly doesn't mean that I will gloss over what's real or about what I'm feeling and what I'm dealing with in order to make Christian life sound more fluffy than it really is. I haven't "felt" good in a really long time. Daily I feel the weight of my real life. I try not to be consumed by it but there are days when that is not a reality. So I read books that take me someplace else, I record old safe movies, and I watch some lame reality TV shows. Well..."So You Think You Can Dance" is not lame...just some of the other stuff I choose to watch. It takes me out of my reality for a short bit and allows me a moment of brain respite.

And since I said all of that I may as well let you know that I feel very much out of the loop with most of my friends lives because people are afraid to "burden" me with more. Like control issues, this is another opposite. It is "refreshing" to hear about others' lives because I can then more easily take my focus off of me. It is quite dangerous for me to always focus on me. It leads to unhealthy thoughts and a clogged brain. So, if you run into me somewhere, please don't hesitate to talk about you. Please don't feel the need to ask how I'm doing. I know you care. So consider your life as a good reality show or a great old movie and fill me in sometime. OK?

Thanks again for listening and for caring. Thanks for the massive boat load of meals during the month of May. That was a God send and a life saver.

See you soon...many hugs.

Thursday, April 23, 2009

2 down, 1 to go


Angela has been pretty busy and is quite tired at the moment, so you get me again. In short, both surgeries went well this week. Praise God! Thanks for your prayers!

If you want the long version, here you go:

Angela’s Gamma Knife surgery was on Monday. We went in at 6:30am. She and I were put into a pre-op room. There she was given a group of last minute questions, poked with a local anesthetic and an IV, and then I was whisked away so she could be fitted with the head frame. It sounds easier than it really was. Angela was given twilight anesthesia (which means that she would be easier to wake up) and they then proceeded to drill four holes in her head, which were used to lock the frame to her skull with some rather large screws. By the way, the anesthesiologist was about 6’5” tall and while Angela was in twilight, she asked him if he plays basketball. After that, she proceeded to ask him about volleyball. Must have been some good stuff that she was on! Anyway, after the frame was screwed on, they woke her up. She was fully awake by now and would remain awake for the remainder of the day. After a bit, she was taken away to get a high contrast MRI and I was able to watch. We were a little nervous about this MRI because we had been warned that since this was much more detailed than the regular MRI, it could reveal even more tumors. Fortunately, that was not the case. There was still only two, so in the words of her surgeon, “no surprises”. However, we feel VERY fortunate to have “discovered” this when we did because in just a couple of weeks, the one tumor had grown from the size of a grain of rice to the size of a dime. Who knows what would have happened if we had discovered this 1 month later. Thanks God!! After the MRI, Angela was taken into the Gamma knife room. That is where her head and the accompanying frame were locked down so tight that she couldn’t twitch even if she wanted to. Interestingly, she was able to move every other part of her body and was even told that it would be OK to scratch her face during the procedure if she would like. By this point, the computer had told them that the procedure would last 16 minutes. Still seems a little Sci-Fi if you ask me. As a courtesy, they showed me the Operating room, the Gamma knife machine, the camera monitors, and the computer control room before asking me to wait back in the waiting area. Sure enough, after about 20 minutes they led me back to the pre-op room, where Angela was already recovering. The doctor came through and told us that everything went well and the surgery was a success. Shortly thereafter, we were driving home. Angela will now go back for a post-op check up next week and then go back every couple of months for follow up MRI scans. So now she has 4 “very sore spots” on her head and is understandably tired - especially after getting up the next day to do it all over again with Benjamin.

Speaking of Benjamin – He had surgery on Tuesday. Benjamin also went into the doctor at 6:30am. Déjà vu?? After some paperwork, etc, he and we were led back to a pre-op area where Ben was given a gown and a bed. The nurses strung him up with monitors and explained a couple of things to him. Then the doctor cracked a couple of jokes and wrote on Ben’s shoulder with a magic marker. He was given a mild anesthesia (pre cursor to the heavier stuff) as Angela and I were asked to head back to the waiting room. About 90 minutes later, the doctor emerged announcing a successful surgery – everything according to plan! We soon were able to join him in the recovery room. By about 10:30 we were leaving the office. Ben was sent home with a really cool (no pun intended) cold therapy machine to keep his swelling down. He had a post-op appointment today and all is well. He will be in his sling for 6 weeks and will be out of sports for at least 6 months.

That’s about it. Thanks for hanging with me. Next up, Cambron on May 14th.

Talk with you soon,


Friday, April 17, 2009


April 17, 2009

Sometimes I wonder why I ever began these updates. Had I realized I would be doing them for years I’m pretty sure I would never have begun. Touché...it's too late now but today is most definitely one of those days where I wish I didn't have to try and get it all into writing. Sometimes it's just so challenging trying to get the brain to cooperate with the fingers. But these next few weeks are going to be so taxing that I felt it necessary to have prayer coverage and other types of human support. I would love to say that I’m not overwhelmed but now that I’ve had time to really sit in all that’s going on, I’M OVERWHELMED!!

Wednesday, we received the MRI results for Cam and Ben. It was Cam's second MRI and it came back as expected...he still has a tear in his muscle. He doesn't "have to have" surgery but if he doesn't, his shoulder will forever keep slipping out of the socket. So, we think he "needs" the surgery. It's hard to play intramural football and wrestle with your brothers if you're shoulder is slipping out! He will be in a sling for 6 weeks and then physical therapy. Cam's surgery could be delayed a couple of weeks but it would then cause problems with his transition into college so we feel we need to get it dealt with now.

Ben. Oh Ben. Will this kid ever stop damaging his body? In my last email I told you that he fractured his shoulder. Well...in reality his damage was far, far more significant. He actually tore his tendons and muscle away from his rotator cuff and has to have immediate and delicate surgery. It is delicate because growth plates are involved and since they are involved, the doctor does not want to perform arthroscopic surgery...he wants to cut him open so he can get a better view of the damage. Our doctor does about 400 surgeries a year and he has NEVER seen this kind of an injury in a 14 year old. Any of you who've had Ben in your house will not be shocked by the news that Ben did something unusual. The doctor told Ben that he was a special boy!! But we knew that already. He will be in a sling for 6 weeks and completely out of commission for 6 months!! Ben has to be virtually still for 6 months...r i g h t. He will then have to go through physical therapy for who knows how long. Sadly, this means that he will not be able to play football this fall. This is a big bummer to me but I am trusting that the LORD has allowed it to happen for a reason (cliché I know but completely true). You see, Ben did everything right when he was skateboarding the day the accident happened (and for my elder friends…this happened the weekend of the retreat!). He was fully padded, even his elbows. Seriously, the kid never hurts himself on the field just on the bike, skateboard, trampoline, scooter, walking, etc. He’s happy though because it gets him out of his piano recital.

Ok, ok enough of that. Onto the next thing. Today, Ben had a pre-op appointment and so did I. It was brutally hard sitting through so much in-your-face reality. Sometimes delayed reality is really nice. For Ben, there is the risk of infection and because he is prone to funky infections, the doc needs to be even more careful than normal. He also has the risk of the growth plates being damaged - causing his shoulder to grow improperly - and problems with the tendons adhering to the bone.

As for me and my procedure, I'm freaking a tad. I will have this weird contraption screwed to my skull...literally...and will be put into a tube so that gamma rays can be shot into my head. Right now we know that I have two tumors in my brain but there is a chance that more will be found the day of the "procedure". This is unsettling but it's better to find them now than for them to go unnoticed. Maybe they will just all be gone when I go in! We can hope. The good news for me is that I was told by the doctor today that there is a 95% chance of these tumors never coming back!

As for Cam, his pre-op appointment isn't for a few weeks.

So, here's our schedule...

Sunday, April 19...our 23rd wedding anniversary
Monday, April 21...6:30 am Angela's procedure (I’m supposed to be out around noon)
Tuesday, April 22...sometime in the morning, Ben's surgery
Wednesday, April 23...Ben's post-op appointment
Wednesday or Thursday...my post-op appointment
Saturday, April 25...Cam's 18th birthday party (this was planned prior to all this other stuff and I'm not about to blow off Cam's 18th birthday)
Monday, April 27...Reed leaves for Hong Kong and several other Asian countries for 12 days.
Thursday, April 30...1:00 pm my next chemo treatment
Tuesday, May 5…Jodie Hillyard’s birthday
Thursday, May 8...Reed comes home
Monday, May 11...Cam's pre-op
Thursday, May 14...Cam's surgery
Monday, May 18...Cam's post-op
June...Cam and Abe graduate

Insanity right?

To be honest, I am nervous and feeling the weight of it all – there are several “little” things that aren’t on the list - but I am confident that the LORD will bring us through this as He has everything else. Ben and Cam are completely at peace and are entertained by the fact that they both have to have surgery on the same shoulder. I am at peace in that we are doing what we are supposed to but will not be sad, at all, if the LORD decides he wants to heal us all miraculously instead of having us go through all these "procedures".

So, this is what I'm asking. Many, many of you have offered help in any way we need. We now need something specific. What we are planning is a time of prayer...for us! Specifically for my procedure and Cam and Ben's surgeries...or maybe we can just pray for miraculous healings!! Anyway, we are going to do this Sunday night, April 19, 8:00 pm at our house (20091 Kline Drive, Santa Ana Heights, 92707) and are opening this up for all who receive this email. This is the only thing that I really feel is going to get us through this craziness so I am choosing to be vulnerable by putting it all on the table. Please don't feel obligated to come, please only come if the Holy Spirit is prompting you. I know He will bring whomever He wants here.

A year ago this weekend, we had a big party for our 22nd anniversary. This year we are going to have a big prayer time for our anniversary! Wonder what next year will be? It needs to begin with a “p”! Picnic? Panning for gold? Potato farming? Playing with Play-doh? Pasta making? The possibilities are endless. We’ll just have to wait and see.

And just so you know that not everything has been icky in our household…Elijah was baptized on Easter Sunday!!! Plus, I finished my “artwork”. I haven’t had time to get a good picture yet so that will come later or maybe you’ll see it this weekend?!

Have a great weekend…maybe we’ll see you Sunday?!


Wednesday, April 1, 2009

the promise is still there

April 1, 2009


I’m stumped on how to begin this email so I’m just going to dive in. This week has been so crazy and it’s only half over. Tomorrow, I have my next treatment but that’s not really a big deal this week. Friday I get the pleasure of visiting a neurosurgeon. Why you ask?? Oh…because I have two tiny little cancer spots in my brain, each one the size of a piece of rice. Yippee!!! My doctor wants me to go to another doctor because this other doctor specializes in the “gamma knife procedure”. It seems like a pretty cool science fiction-y kind of procedure but I’m not really very excited about trying it out!!! I’ve never liked sci-fi. The only redeeming thing is that they sort of knock you out so I actually might get some sleep! In the midst of all of this, I have the extreme pleasure of taking Cam and Ben to the doctor for shoulder injuries. Ben fractured his shoulder doing a skateboard trick (Ben’s 14 and has had 7 fractures…not ONE from football!!!) and Cam has a shoulder issue that needs surgery. By the end of this week, I will have been to a doctor of some sort five times. I’m truly not bringing up any of this stuff for pity…only for the extreme entertainment value it holds. And, for you to know that if I’ve promised I would get something to you or call you, there really is a great reason as to why I haven’t (and possibly never will)!

The truly amazingly awesome thing that has happened though is that the LORD has spoken to me in some super powerful ways over the last few weeks. I know that’s a really bad sentence but I’ve been so excited to hear from the LORD again that it’s hard to put it into words. This last weekend, God gave me an assignment. Let me try to explain. A few years ago, a couple of dear friends - who now live on different continents - gave me the same exact scripture within a few months of each other. Both confidently knew that the LORD had put it on their hearts for me but didn’t really know why. I never truly understood the importance of the scripture in regards to my life but somehow gained strength from it anyway. So, I held onto it knowing that some day it would make more sense. It’s not a well known scripture and it’s in a book that’s not common so whenever I’ve heard it since, I’ve totally perked up. A week ago Tuesday, God gave it to me again but in a way that I couldn’t just glide over. It hit me so hard that I decided I needed to look up every translation to figure out if I could figure out what God was trying to tell me. I printed off all the translations I could find but wasn’t able to read them all for a few days. FINALLY, this last Saturday, I was able to get them all read and that’s when God made it clear to me what I was supposed to do. The scripture is Habakkuk 2:2-3 and it reads…

“Then the LORD told me:
‘I will give you my message
in the form of a vision.
Write it clearly enough
to be read at a glance.
At the time I have decided,
my words will come true.
You can trust what I say
about the future.
It may take a long time,
but keep on waiting –
it will happen!!!’ “ (CEV)

I was stunned when I read this version because I finally realized what God was telling me to do (this was confirmed by Reed, unprompted) but I’d never done. I’ve always read this to mean that I needed to write my story out and felt that I was doing that in the form of journaling and these update emails. However, in all the versions I could find, it is made clear that the “vision” I need to declare needs to be written in a way that can be read clearly and quickly. Journals and emails are hard to read quickly and it’s hard to find exactly what you’re looking for. So, I knew that I needed to write it big enough to be seen easily and quickly. This led to the assignment I received from the LORD. I am creating two large canvases to be displayed in a prominent place in my house…not only will I see it every single day but so will anybody who comes to my house. One of the panels has the Habakkuk scripture on it and the other has the vision promise that I still can see and feel so strongly. The LORD did give me a vision and with that vision was attached a scriptural promise. This literally occurred to me while I was in the shower a few years ago and has been confirmed so many times that I’ve lost count. I don’t know when that promise will be fulfilled but He’s making it abundantly clear to me that my job is to wait and continue believing. This has not been easy as of late but for some strange reason, the worse things get for me, the easier it is for me to believe.

This is what the other canvas says…

“This is the message
the LORD gave to me…
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 (Msg)

So, in the midst of this crazy week, I’ve been given an assignment that has honestly been a huge challenge for me - and it’s not because I lack artistic ability. I’ve had to study these words in an entirely new way because I refuse to have something hanging on my wall that I don’t like. I’m not finished with it yet but am really getting excited at how it’s looking and the story it portrays. Plus, it’s already been a discussion starter with our piano teacher.

I’m finally done. Thanks for staying tuned !

Hugs (from a non-hugger who appreciates hugs!)…

Monday, March 2, 2009

a REALLY quick FYI

On Thursday, March 5th at 1:00 I will go back in for chemo treatments. That is, assuming God doesn’t massively close the door. I’m hoping for a closed door but not expecting it this time. He actually did close the door 3 times in a row over the last month and allowed me to experience some pretty cool things (like Hong Kong and a silent retreat) but I’m thinking that this one is going to go through L. I don’t know when the next treatment will be but it will likely be in a month-ish. Ok…that’s about it. Just wanted you all to know.

Take care,

Sunday, January 25, 2009

the good, the bad, the ugly

January 25, 2009

The Scan Results

The good…
The cancer is still gone in my lungs, liver, and spinal bone.

The bad…
The cancer in my chest wall as enlarged a teensy tiny bit and I now have two new spots…also very, very small…in my hip bone and hip socket.

The ugly…
The damage done to my body caused directly by the cancer and chemo…mostly the cancer.

The good…
The doctor adamantly stated that I was NOT dying…I knew that already though J.

The bad…
Doc wants me to have 6 more treatments…one a month for 6 months BUT he did tell me to go home and pray about it (that’s not bad J).

The ugly…
Duh…the chemo.

What am I going to do?? I don’t know. I’ll let you know when I figure it out. I simply cannot let go of the hope of a complete NON-medical miracle. In the world’s eyes this is foolishness, and probably in the eyes of many who receive this email, but my heart just won’t let go of that hope.

Tah, tah for now,

Wednesday, January 14, 2009

Angela's Scans

January 14, 2009

Angela’s Scans

There was a young man whose name was not Dan
His job was to prepare my bod for a scan.

To the room we went and for the needle he sent,
But the scans for today were simply not meant.

Into my vein the needle did slide,
And into my arm the pain did not hide.
Oops! The floor and my face did nearly collide.

I awoke confused – very much in a daze,
Not knowing where I was because of the haze.

My husband’s sweet voice and frightened tender face,
Helped bring to memory the quite familiar place.

Next came the nausea and sweating chills,
To the bathroom I ran without any thrills.

The doctor and tech were very alarmed,
But was it for me or the tech who was harmed?

With the bloody needle my tech did get poked,
Much concern and fear this fact did evoke.

Reed brought me home and I went to bed,
To the clinic for testing my young tech he did head.

This should end the tale of Angela’s scans…
Can I please ban? For I am no longer a fan.

But sadly for me this simply won’t be,
For on Friday again the tech I shall see.

Let’s hope this time is better and I won’t pass out,
For if I do, I will scream and I will shout.

On Friday the 16th I ask you to pray,
At 11:00 a.m. I hope for no delay.

I’m done with this poem I can no longer rhyme,
I’m hopeful results will be different next time.

For barfing and fainting truly aren’t me,
I’m more prone to sarcasm and lots of green tea!!!

Angela Robinson ©2009