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'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 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 is currently 2:00 a.m.

This morning (well Friday'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" 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!!!'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 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.