Sunday, November 27, 2011

Happy Belated Thanksgiving

So much to be thankful for...

My children and their health. My husband and his health and job. My parents and in-laws and their health. Our friends. Our home. Our church and school communities. Our football/cheer support system. My doctors. Our health insurance. Most of all, my faith, without which nothing makes sense.

Who knows what the next year brings for any of us? I, for one, am trying to treasure each day, each interaction with the people in my life. I am trying to worry less about how clean the house is and more about how I can please my family with little things, especially the most basic thing of all: my smile of delight when they walk in the house. I am appreciating the days I feel well and trying not to be frustrated and worried about the days I don't. (I am only experiencing marginal success with this one--I want to feel well NOW!)

My treatment plan going forward is relatively gentle, and I am also thankful for this. We are going to try Herceptin alone, both intrathecally (directly into my brain) and systemically (into my chest port) every three weeks. In addition, I will be taking Tykerb orally daily. If I continue to have trouble with nausea and vomiting, I will drop the Tykerb, but we are in the "see how it goes" period right now. I have had a lot of trouble with eating and hope that this will not continue for long. Imagine, ME, not finding food appealing! Unheard of. And unwelcome. Takes a lot of the fun out of life, let me tell you! At any rate, we will scan the brain again in February and see what things look like. Here's hoping there is nothing to be seen.

I hope you all had a blessed Thanksgiving. I am thankful, also, for all of you who read this blog!

Sunday, November 20, 2011


Today officially ended our football/cheer season. As happy as I am that we play this sport as a family, I am always even happier to have the break that the end of the season brings.

I seem to be unique in this view within my family.

Wednesday, November 16, 2011

Happy Cancerversary to Me

Well, today it has been two years since I first heard the words, "invasive carcinoma". On Sunday it will be two years since I realized it was stage IV from the beginning. As of now it has been six months since I learned it found its way to the brain. Anniversaries everywhere.

While of course I am so grateful that I have had two years, one and a half of which were almost like living a normal life, the last six months have been very, very difficult. I never knew how debilitating it could be to be so ill, day after day, not being able to care for the basic needs of my family, to be on a chemical roller coaster, to be wondering where it is all going and how much more I can take. Even knowing it is the steroids that are pulling my master strings does not help me cope much some days.

I thank God for my faith without which none of this makes sense (and, truthfully, somehow it is hard to make sense of it even with faith some days--those days are the worst). I am praying hard for strength, energy, unwavering faith and long lasting health. But most of all a cheerful heart and a strong desire to serve God however he wants each day I have.

I could not have made it through these six months without my community of friends and family and the army of meal bringers and laundry helpers and drivers. I am so hopeful I will get better and I can drive again someday soon and sing again, but until them I am learning to accept my limitations, a valuable lesson I am sure.

I know for sure that I am a daughter of God and therefore worthy of basic human dignity whether I can get off the couch or not, but I sure feel more worthy when I can take care of the needs of my family.

So, here's to another two years (and more) with better strength, health, faith and resolve. My scans look good, so here's hoping! Brain lesions be gone and stay away! Liver, hold fast. Lungs, don't even think about it!

Oh, and leg clot? I am SOOOO over you. Go away.

Friday, November 11, 2011

The Next Battle in My War on Cancer

After two or three lovely days at home, I am back in the Santa Monica UCLA Hospital for a few days.

This week I used my new Ommaya Reservoir three times. That is the port on my head that drips medication right into my brain and spinal cord. The Monday access worked very well. I experienced no problems or pain and the Herceptin began to do its job immediately.

I was supposed to receive a regular chemo called DepoCyt at the same time of the Herceptin but the Fed Ex did not arrive in time, so we rescheduled for Wednesday. I asked if we could skip the heavy doses of Decadron steroid that made me so miserable toward the end of the summer. He said OK and we would just go slow and watch me.

Big mistake on my part. My doctor knows more about cancer than I do.

About 2pm yesterday I spiked a fever of 101.8, developed chills and a massive headache, violent vomiting and steady nausea. That was 3 of 4 "go to the ER IMMEDIATELY" instructions on the DepoCyt, and by the time we arrived I had all 4. We called our doc and his staff verified, go because these are the same symptoms of Bacterial Menengitis which is REALLY bad. So, they immediately put me on high power antibiotics and are treatment as if I have the worst case scenario until the cultures come back showing otherwise.

I am coming to appreciate the hospital. I felt sicker than I have ever felt in my life yesterday afternoon/evening. As if I had the worst stomach flu you can imagine. That at least put me in a private room quickly because apparently vomiting people in the lobby is not an attractant for new patients. It's the little things that make unbearing situations more bearable. For instance, When we arrived in the ER I ran in and made a general announcement that I was about to vomit and could I please I have a pink bucket. People started running in different directions, the waiting patients starting turning away and covering their mouths. No pink tub was arriving regardless of the scurrying of so many, so I located the nearest triage room sink. About 3 nurses grabbed me and screamed, "Not in the sink!". They practically shoved my head inside the biohazard trash can and not a moment too soon. Needless to say, we found our way to an upstairs, private and fully admitted room in record time.

At any rate, our hope is I will be home by the end of the weekend, infection free, tolerating the Decadron, feeling as well as I am right now. As for future treatment, I am not sure of the details but I am certain I will be continuing Herceptin in both ports. As for the DepoCyt I hope I never again have to experience a time like today again. Today's MRI showed nearly the all the cancer in the brain is gone and now they are keeping an eye on only one receeding spot.

Keep up the prayers--they are working!

Friday, November 04, 2011

I'm Scary After All

When the neurosurgeon changed my wound dressings this morning, I found 11 jagged metal staples in my head. Honestly? It's not my best look. But I feel oddly tough and confident I could hold my own in a bar brawl, so at least that's one less thing to worry about.

I am just sitting, feeling pretty good, waiting for transport to take me to the car. I can't wait to see my kids!!!

Wednesday, November 02, 2011

Not What I Expected

I had imagined all sorts of things...a horn like a rhino's that the kids could play nerf rings on. An upside-down kiddie pool with a water collection feature in the sagging middle. At least some jagged staples giving me a partial, really-mean looking sneer-shaped facelift. I was really looking for some respect on the playground. Can't you just hear the 5th grade boys someday soon when I come to get my kids from school (God willing)? Mrs. D. is SOOOOOOO cool! Sam, can I come play at your house so I can get a better look at your mom's freakish head? Do you think she is one the characters from the Lightening Thief?

After all, folks, I had BRAIN surgery today. Some impressive evidence of this would be nice.

Well, color me disappointed in this regard. All I have to show for having had a hole the size of a drinking straw drilled into my head and a catheter threaded deep into the recesses of my brain today is a sweet little white piece of gauze delicately edged in blood. BOOOOORRRING!

Well, at least I have a shiny new button for my purse that reads, "I had brain surgery. What's your excuse?". This cheers me greatly in the absence of all the above. Because, after all, brain surgery is a really big deal (if it wasn't, we wouldn't have all those "It doesn't take a brain surgeon..." jokes), right?

Ok, ok....enough joking around about something so very serious. To recap, this week alone I have had my spinal cord punctured, fluid removed and replaced with extremely toxic chemo (no anesthesia whatsoever); an egg beater placed (and turned on, mind you) in my femoral vein, a filter threaded with wire down a vein in my neck and attached somewhere in my abdomen) to catch the pieces of blood clot loosened by the egg beater before they reached my lungs (twilight anesthesia--don't fall for it, there is no such thing); fasted, even from water and ice chips, on a queasy stomach, for two days in a row until 6pm as I waited for my surgery; endured ridiculous tights that deflate and inflate on each leg to prevent more blood clots; had my skull opened up for the express purpose of being able to bathe my brain in more toxic chemicals (though, blessedly, far less toxic than the methotrexate from the spine, since this one is for the long haul), and had a rough breathing tube shoved down my throat when all I want to do is start singing again.

Now, this may seem like a giant complaint (and I admit it kinda' is!). But the truth is that I came dangerously close to death at least several times in this last month...giant undetected blood clot, near starvation/dehydration, measurable new growth, though happily not too much, of the cancer in the brain in just 3 weeks...but scariest of all, the beginnings of my belief that I could not endure any more. I didn't think I could accept feeling so sick for much longer and was losing my will to fight. My family and your prayers are what pulled me through. I felt your love and support in such a tangible way that it got me out of bed for my nightmare-procedure-of-the-day rather than rolling over and drifting back to sleep where nothing hurts. You all reminded me to continue praying for myself, too, and so many of you came to help me do just that. You made sure I saw a priest, was anointed, received the Blessed Sacrament nearly every day I was in the hospital. You continued to bring meals and send cards, my kids' football/cheer organization created and sold "Rebels With a Cause" rubber arm bands and special shirts to benefit our family, and put the boys at every level in pink socks for the whole month. I am so grateful to you all for helping me to keep the faith, literally.

Now here I am, likely going home tomorrow, with every expectation of some extended period of good quality of life. Now, I am a realist. I know my statistics, but I am not a number and intrathecal administration of Herceptin is showing great promise and is still very new. I am on the forefront (again) of what our new medications can do and how they can be used. My particular flavor of cancer HATES Herceptin and I can't wait to send it a message tomorrow: we are not messing around and we are not backing down. (oh, yeah,and we're MAD too!)

Please continue to pray for my healing but also that my faith and will stays strong because to feel that waiver, even a tiny bit, is the scariest thing of all.

With much love, hope and gratitude,

Happy news!

Hopefully, this will be my last update as guest blogger and Suzanne will be able to resume blogging very soon!

I went to visit Suzanne today and I am happy to report that she is doing wonderfully inside and out. This afternoon she finally had the procedure for the Ommaya reservoir. It was all done without a hitch and when she returned to her room she was awake and making jokes. The worst part of the whole thing was that they still won't let her eat or drink until they review the CT scan to make sure all is in place correctly. For the first time in weeks, she is hungry! The doctors finally found a medication to ease the nausea and she is busily reviewing her menu and anxiously awaiting the clearance to eat.

Tomorrow, she has a 10 am appointment with her oncologist who will then administer the herceptin infusion. After that, she is free!

The herceptin being administered straight into her brain will control, if not completely eliminate, the cancer that is residing there. With the cancer elsewhere already under control we are hoping that this is the beginning of a wonderful time of recovery. Praise God!!

Tuesday, November 01, 2011

A minor delay

As you know from Suzanne's previous post, she was supposed to have her new port put in yesterday. However, there was a delay and she didn't have the procedure until this morning.
As of now, we are not positive when she will be having her first infusion of the Herceptin through her new port. We do know that it is against hospital policy to do the infusion while she is still an inpatient at the hospital. So, she will have to be discharged in order to go to the Westwood campus to have her infusion. After that, we will see. Will they simply send her home? Send her back to Santa Monica to be readmitted? Quite a few questions and not enough answers!!
Thank you all for the continued love, support, and prayers. When we learn the next steps I will do my best to post it here.