Let your frustration be your joy

After my poor blood work results last week, I was instructed to go back again on Monday of this week.  I went back and there was no change in my numbers.  I was feeling pretty bad, but I attributed it all to the counts being so low.  I progressively felt worse and worse.  Beginning Monday morning a strong headache started in my neck and pulsed throughout my head for the day.  I took Tylenol on and off and slept most of the day.  I slept from about 2:30 on Monday through Tuesday morning.  I did some things Tuesday and came home and went back to bed.  I couldn't shake the headache and at this point I couldn't get out of bed.  I called my nurse to let he know what was up but that I wasn't concerned because my MRI last week was completely clear and I was guessing it was a result of the low counts.  She didn't agree.  After a quick call to my neuro-oncologist I was sent to the ER for a head CT and a host of tests to see if there was a brain bleed or intercranial pressure.  

On the way to the hospital I couldn't sit up and I couldn't focus.  They got me checked in and I couldn't stand the light or stay awake.  I covered my head with a blanket and slept.  Of course, it took a while for everything to happen.  I had 3-4neurological exams, 6 vials of blood drawn, an IV and a shot of morphine.  I was finally taken back for the head CT which turned out to be fine.  Another neurologist came in and did an exam and recommended a lumbar puncture. I was not in favor of this idea!!!!!  

They explained to me that with my blood counts low there could be an infection that no one can see in my spinal fluid.  By drawing some fluid out they could test it to see what might be going on.  I really didn't want this test but I said I would do what they wanted.  This neuro doc called my neuro doc and they discussed things for a while.  

If I had a bacterial infection, I would have had more symptoms.  There was no brain bleed on my scan. If I had too much intercranial pressure than my head would feel like it was exploding, which it wasn't and medicine wouldn't help, which it did.  Meningitis would have also shown up on my scan.  

So after a few hours of close watch with nothing conclusive, my neuro  recommended that I stay over night for monitoring.  I was surprised by this because they didn't find anything.  I asked what they would do differently in the hospital that I wouldn't do at home.  At either place I was going to sleep.  They talked about it and allowed me to go home with a promise that if I had any lethargy or severe headaches I would go right back and get admitted immediately.  They gave me some prescriptions for pain and I finally left late last night.  

Between last week and this week I had 5 or 6 blood draws and IV's.  When the nurse went to put in my IV she looked at my veins and said "look, here's Old Faithful!  We'll use this one since it's already proven to work". I laid there and looked at my arm lamenting all of these needles and wishing it wasn't like this.  I was tired of being pricked and poked.  I don't want to have an "old faithful" vein.  

I remembered a book I read that I was given for Christmas.  It was called Between the Darkness and the Light.  It was an incredibly powerful and must read book.  But what I remembered last night was the chapter about frustration.  The author said that we think we are frustrated by all of these things in life, but often, when we look closely our frustrations often turn out to be our greatest joy.  If we are frustrated at kids or jobs or house circumstances, if we take a look again the things we say drive us nuts, they are really sources of joy.  

So as I pouted over Old Faithful I was reminded that my veins haven't collapsed, that they are strong enough to withstand the pokes, that I have amazing and competent doctors and nurses who cause no pain with needles and that I was alert and aware and alive and my blood and veins are proof of that.  

Of course, when they tell you that your brain might be bleeding your thoughts race quickly.  I wanted to be with my children, in my bed and surrounded by whining and piles of laundry and cat hair... Surrounded by the things that generally cause me frustration.  

I was finally discharged last night and I came home and went right to sleep.  I woke up this morning still feeling the headaches but after an hour or so my head cleared and I feel really good.  

I talked to my nurse again this morning and she said I sounded much better.  There could be a viral infection, but even if they found it, they don't treat viral infections. 

So, now I will have another week or so with no more chemo an time to relax.  

I'll speak tonight at church about 2 Corinthians 5 and how "now" is the time.  Waiting for a different time to reconcile, to change, to start over is not the way to go.  There is no point in waiting when there is "now."  I'm grateful for lent because I love the seasons of the church and I love remembering that it is God's breath alone that gives me life...that without it I am a pile of ashes.  

Ashes or no ashes, I pray that this is a day of reconciliation for you!!!

Highs and lows

I had my check up today. 

The great news is that my scans continue to be completely clear. This is ultimately the most important information. 

In other news my blood counts continue to plummet. 

As I said before, a healthy adult has a platelet count of 150-450. Today I measured at 60. This is the lowest count I have had yet. 

Low platelets cause bruising and bleeding. I am to go to the ER if I get a nose bleed or if I get a cut that doesn't stop bleeding. 

My white blood cell count is 2.5 and a healthy count is 4.5 to 10. This number is my ability to fight infection. 

My blood pressure came in at a whopping 88/50. 

I go back for bloodwork again Monday. If my numbers go down again significantly, the next step is to talk about a blood transfusion. 

So, in response to this news, I will not start my next round until we return from our trip to Iceland on February 21. In addition, he decreased my dosage for the next round to 300 mg. 

These numbers explain why I am so tired and why I am unable to get through the day or walk up the steps. The doctor said that my body and bone marrow are responding to the increased and prolonged exposure to toxicity. 

The news is not unexpected. And in some ways it is a huge relief. I left the office smiling because now I will be able to enjoy the holiday and the trip a little bit more. 

 I'm hoping and praying Monday goes well and my body bounces back soon. 

Time for a nap. 

Job

This past Sunday, I was given the great privilege to offer a reflection on Job 38 for our church. It was my first sermon in 18 months. After helping out at church here and there for a while the session voted last month to add me to staff in a very part time agreement. We are working to make a position of Parish Associate but that will take time with church policies, etc. 

Everything went really well and I felt God's presence with me the entire time. 

More than anything I was just so grateful to be able and well enough to lead worship!!! I know so many brain tumor patients who have lost speech or mental clarity. I have struggled with the thought that I might never be able to get back to work because I spend so much time at the doctor or in bed. This opportunity fits perfectly with my time and energy level. It is a huge blessing to me and I just pray I can be a blessing to them!!

Round 7, check

Round 7 was another trip through the ringer. My nausea was worse, as expected. I only took the second medicine once because it made me fall asleep and I didn't want that. So, I took my Zofran, a little more than I was supposed to, but I needed it. I also found that gum and ginger mints helped so much. 

It was a weird round in that I didn't sleep as much and the severe part of it didn't last as long, but I felt as though It seemed to drag out a very long time. I didn't recover until a few days ago (2 weeks post meds). I was so drained and sluggish. I couldn't climb steps without taking a break and my appetite was gone. 

I went to bed really early a few nights ago and Paul asked why. I told him I still wasn't back to myself. As we layed (lie?) together we were chatting and I asked why I had my appointment next week already, so close to the last one. But when we did the math, it has been a full cycle. I was shocked and surprised because I didn't get that recovery time. I started to panic because Valentine's Day is coming and I don't want to mess up the fun for my kids. In addition we are traveling to Iceland soon and I realized all that I will have to do to prepare, in the middle of a treatment cycle. Paul comforted me as usual and promised to take care of everything. I just have to be okay with it not being perfect, which as you know is a great struggle. I continuously set myself up for disappointment. I guess I have to learn to be okay with that too!!!

And so here I am, a few days away from another MRI and another dreaded torture week. And yet, I'm alive and relatively well and I'm grateful for the opportunity of each day. So I'll enjoy 4 days of feeling great!! I covet your prayers on February 4th!

Glioma Research

Here is a new and somewhat promising article about glioma studies. It's pretty technical, but gets more clear as you read. 

http://mobile.nytimes.com/2015/12/24/health/brain-cancers-reveal-novel-genetic-disruption-in-dna.html?referer=&_r=0

In her first performance...

The kids school offered an after school piano/keyboard class last quarter and Maeve was very excited to sign up.  She took to the instrument quickly and would even practice regularly on a paper of a printed keyboard at home.  After 8 weeks her class had a recital.  She was very shy at first, but finally went up to play her song.  We are all so proud of her!!

7.1

Harder and harder it gets.  But I guess, in some ways easier.  

I started round 7 on Wednesday.  On Thursday I headed to the drug store to pick up some prescriptions.  I got confused and then really frustrated when the orders couldn't be filled yet.  I felt myself start to mentally collapse because I had walked to the drug store and I would have to come back again the next day.  As swiftly as I started to panic, I remembered that I'm taking chemotherapy drugs!!!  How funny is it that it was a relief!  I was able to check my feelings and balance them with a  little grace.  

Yesterday I made it until noon and then slept all day.  Walking up the steps was hard and took my breath away.  Today I couldn't stand.  A shower was exhausting and it felt as though a heavily weighted  X-ray blanket was pulling me down.  So, I am back in bed.  It's actually quite nice.  The kids and Paul are skiing and I can't do much so I actually sat and read, which I never do.  The nausea is still hanging on, but I'm coping.  I guess this is what people do when they relax? Sit in quiet, read, and nap.  Why haven't I tried this before?  

My next MRI will be February 4th.  

I'm continuing to pray for Dugan, Pete and Bill... my brain cancer buddies.  Please add them to your prayer list!