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Wednesday, February 16, 2011

Throwback Time: in honor of this time in our lives, 5 years ago.

This is a string of emails - my apologies for the overlapping timeline and differing authors.
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feb 10, 2006 (Ian)

Hello all,

Ian writing here, just borrowing Rachel's account, since in her slight OCD-ness, she has made a nice mailing list for everyone!

I know that there are some of you who are new to this mailing list, so let me give a brief synopsis:

Three days ago, on Tuesday, I was informed that I have a brain tumor. I had been seeing various levels of eye doctors since early January due to some mild symptoms that were initially diagnosed as Ocular Migraine. There was no pain involved, just some moderate flashing and blind spots in the peripheral vision of my right eye.

As each successive doctor found nothing wrong farther back in my eye, I was sent for an MRI to rule out the possibility of a tumor or other obvious nerve damage. Or in my case, find one.

The tumor is about the size of a golf ball, right against the back of my skull on the left side. It is currently diagnosed as a low grade oligodendroglioma (wow, I think I spelled that correctly), which is very operable. The doctors will not know if it is cancerous until partway through the surgery, but it does not show up as cancerous on some of the more advanced MRI pictures.

I am scheduled for surgery next Wednesday, the 15th of February, to start pre-op as early as am, hopefully to be out of surgery by 4pm. I will then spend one or two nights in the ICU, and one or two more nights in the hospital ward. I will then come back home to six weeks of convalescent leave from the Navy, and up to a year of limited duty.

We are unsure as of yet as to how my Naval career will be affected, but it is almost certain that my flying days are over.

Throughout all of this, God has truly shown me his grace and strength, and I would encourage everyone reading this that I am in very high spirits, although periodically wishing I could ask Him why He has chosen this particular manner in which to bless me!

Over the next few days, lots of family will be arriving in the Norfolk area, kicking off with my Mom and Grandparents, then my Dad, and later Rachel's parents. We are all going in to the hospital on Tuesday afternoon to meet with my Neurosurgeon, Dr. Tina Rodrigue, for a question and answer session.

Phone calls, emails, and letters are always welcome, as if nothing else, this gives me a great opportunity to talk to some people that I have had a bit of a tendency to lose touch with.

Brief Prayer List (Expand as you see fit)

Me
Rachel
Audrey
Jim Maize (my dad)
Carol Reece (my mom)
Mark and Ellen Jones (Rachel's folks)
Grandparents galore
Dr. Rodrigue
Associated Nurses, techs, etc.

I hope this letter finds everyone well, and rest assured that I am also well, and in good spirits and most certainly in the shower of God's grace!

Love,
Ian (and Rachel and Audrey)
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feb 15,2006 (Rachel)

There is nothing more beautiful than the sight of your head-bandaged husband after a long 10-hour day.

Ian's surgery was a success.  He will have a follow-up MRI in the morning to see if any left-over tumor  can be detected, but the doctor seemed confident that she was able to remove it all; she said it was well-defined and separated from the healthy brain tissue.  She also said that there had been a great deal of swelling, and Frank was soon to have been a big problem ... so in other words, we got it just in time.

When I left the hospital, Ian was groggy, had a horrible-sounding throat (from the breathing tube), could feel where he would be getting a headache, and has a puffy, squishy face from being face down for so long.

BUT

Praise God, my Ian is safe.  He sang as much of the alphabet song as his dry mouth could take, and even smiled a bit.

Thank you everyone for your thoughts and prayers.  We don't know what this recovery will look like, but we know it will be accentuated by your fervent prayer.

Please don't be strangers!  Ian will I'm sure appreciate calls, letters/cards, and visits.  He's not looking forward to lying about, so having people show their support will mean a lot.

I will continue to update by the day, as much as possible.

Love you all,
Rachel
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feb  25, 2006 (Ian)

Good Evening All,

Well, it has been a week or so since the last major update, and certainly some new information has come to light.

First of all, my recovery from surgery is going, by all accounts, exceptionally well. I was out of the hospital less than 48 hours after surgery, am almost completely off of the pain medications prescribed, and am back to showering without a shower cap now that my stitches have been pulled. My hair is growing back, and although the horseshoe scar is still visible, it's already becoming less so.

The other great news is that Rachel is, in fact, officially pregnant, verified by blood test at our local medical center. They have assigned her a due date of October 20th, although Rachel believes that she may be a bit further along than that. We shall see.

Unfortunately, all is not rosy. During my appointment on Thursday to have my stitches removed, my surgeon informed me that some preliminary pathology information had come back from the material removed during surgery. What had been initially thought to be a low-to-mid grade tumor is in fact more malignant, now being classified as a Grade 3 Anaplastic Astrocytoma.

What that means is that my battle with this tumor is just beginning. This type of tumor is almost never completely curable, and I will begin to undergo my first series of treatments to control it, hopefully effectively and for quite a long time. I am expecting to start both chemotherapy and radiation therapy within the next two weeks, although I will have more detailed information on both treatment plans after meeting with those two oncologists starting next week.

What I also know is that this road will not be easy, either for me or Rachel. We truly covet your thoughts and prayers as we cope with this new information and enter a new life as cancer survivors.

There. I said it. The C word. It is still a bit surreal, as other than one night in the ICU, I have felt fine up to this moment! Yet the fact remains that I am in the early stages of treatment of a very significant medical issue.

I remain confident in the knowledge that God means this for His glory, and His positive influence on my life has not left me. If I could ask one thing of each one reading this, it would be to let me know if I seem to be losing that positive attitude. I have been given the gifts of a successful life accompanied by a wonderful wife and a beautiful growing daughter (and 2/9!), and I will try not to let any aspect of my cancer or its treatment take my thoughts away from the blessings I have right here.

In closing, I would like to refer everyone to two resources that have already been very helpful to me in finding information and support. The American Brain Tumor Association (http://www.abta.org), and the Lance Armstrong Foundation (http://www.livestrong.org) have both been exceptional sources of both information and inspiration.

I will plan on trying to send out at least one update weekly, with additional updates as required for important information. If anyone would rather not remain on this mailing list, please let me know; I won't be offended. Conversely, if you know anyone who is not on this list who would like to be, please also let me know; I'm an equal opportunity emailer.

Please feel free to reply, write, or call anytime to me or Rachel. We are slowly coming to grips with this situation, and knowing we have external support is always helpful.

Sincerely,

Ian Maize

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march 6, 2006 (Ian)

Good evening all,

I waited until tonight to send this update, because I wanted to have information on both of my upcoming treatments before sending it out.

I've had three appointments at the Radiation Oncology clinic at the Naval Medical Center, all of which have been informative, but only two of which I would call neat. The first was my meeting with the oncologist, Dr. Wilds. He was very helpful in explaining the concept of radiation therapy, and my course of treatment.

The other two appointments were what I suppose you would call practice. The first was my introduction to the mask. It was a plastic sheet that was heated and stretched over my head, then connected to the table I was on. It sort of ends up like chicken wire, flexible enough that I can breathe, swallow, etc, but stiff enough to keep my head stabilized during the treatments.

Today's appointment was a 'simulation' of the radiation, marking the projections of the radiation on the mask to ensure that the plan works properly. The actual radiation treatments will start tomorrow morning, and continue for six weeks, five days a week. Each treatment will only last about 30 minutes. The therapy will cover the area where the tumor was, plus a border of about two centimeters (statistically, if or when the tumor regrows, it typically does so within one centimeter of the original tumor area). This is done by shooting radiation from four different directions during each treatment.

Supposedly, the major side effect of radiation therapy is fatigue. However, my hair will probably fall out in the affected area, and I'll start having to wear hats to avoid sunburn.

I also met today with my Hematology Oncologist, Dr. Reninger. The other half of my treatment is chemotherapy, which I sort of always thought was what is actually the radiation therapy. Turns out, chemotherapy is actually a drug (one of many), given either orally or by IV, depending on the type of cancer and stage of treatment. I will be taking an oral chemotherapy, a drug called Temador, which has been very successful at treating brain tumors in particular. I will take Temador daily during the six weeks concurrent with radiation therapy, then five days out of every 28 for the following six months.

During and following the two treatments, I will be getting regular MRI check-ups to see if the tumor is trying to grow back, or if the treatments are being effective at keeping it at bay.

Other than the impending treatments, things are going really well! I've been enjoying the opportunity to be a full-time husband and dad, slowly finishing the last stages of our bathroom remodeling project, and generally eating well (we're still finishing leftovers from all of the meals brought to us after the surgery - a special thanks to all who were able to help out!). Another side effect of the treatments is loss of appetite, so I'm storing up :)

I have gotten so much enjoyment and uplifting from all of your calls, cards, and emails, and I confess my lack of attention to writing personal notes back. Thank you all for being better communicators than I am!

Well, it's almost 11pm here, and our 19-month old alarm clock doesn't allow for much sleeping in. That, and I do have an important appointment at 9:30 am to start fighting whatever tumor cells are left!

God bless you all, and thanks for your continued attention!
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march 11, 2006 (Ian)

Good afternoon!

For those of you not in the greater Tidewater area, you are missing out on some exceptionally nice weather! It's probably about 75 degrees today, sunny, with a light breeze blowing (I think even Rachel would call it a nice breeze!).

Audrey got a visit to the zoo today, courtesy of Verna McCrillis, which left Rachel and me to a blissfully quiet morning doing mostly nothing! The zoo report was that Audrey walked almost the whole time, one hand on the stroller, and that almost all of the animals in the zoo were actually out in sight! I guess they were enjoying the fine weather as well.

On to the medical update. As of today, my first week of radiation therapy is over, and I have taken four doses of Temodar, my chemotherapy drug.

As of yet, the radiation has been a complete non-event each time. The staff at the Portsmouth Radiation Oncology clinic is great. All of the nurses, doctors, techs, and other staff are very friendly, knowledgeable, and professional. The treatments are short - about 20 minutes - including the time to check in, get lined up on the table, get the four shots of radiation, get unhooked from the table, and get out. I also appreciate that almost every office I walk into has a Bible on the desk! Perhaps it's a result of working around cancer patients every day, or seeing God's hand at work in those patients, I can't really say for sure. But I know it has helped reaffirm my faith that so many of my medical team are also working from a position of faith.

As for Hematology Oncology (the fancy term for chemotherapy doctors), it has also been going well. I got my pills with the admonition that they are likely to cause nausea and possibly vomiting. So, I was also issued a prescription for anti-nausea medication. Well, under the theory that fewer medications is generally better, I decided to tough it out the first night without the anti-nausea medication. After all, I don't get sick very often, and even things that generally make others nauseous (roller coasters, airplanes, spicy food, etc), don't have the same effect on me. Well. Here's for listening to the doctors. Tuesday night I was pleased to spend about an extra hour of quality time in the bathroom over my normal night. Ha. After about 45 minutes, I went ahead and took the dose of anti-nausea medicine, and, voila, I slept the rest of the night. Each night since, I've taken the anti-nausea stuff 30 minutes before the chemo pills, and have been nausea-free since.

So, overall, as my first week of treatments draws to a close, I'm really feeling pretty well. I would say that the treatments, or the remaining surgery recovery, or some combination, has made me fairly tired. I now take a nap most afternoons, which although I probably felt like taking on normal days at work, I think I actually need now. I am also a bit prone to minor headaches, which are usually attributable to some overexertion or other miscalculation on my part. But on the whole, I am feeling very well. I still snore at night, Rachel still kicks me for it or wakes me up to tell me to roll over, so I can't be all that sick :)

I know it's a tough leap (maybe St. Christopher helps here), but Rachel and I want to really emphasize how important our faith has been throughout this (to us) epic ordeal. I mean, how else could we face the possibility of this prognosis? Day by day, God proves His faithfulness, pouring out grace in infinite quantities. Somehow, we manage to find enough of it each day to get by. There will be easier days, and harder days, but we are always confident that He will provide. If anyone reading this is struggling with any questions about God, faith, and your own life, I would welcome the opportunity to talk with you about it. I believe that the most effective way to share the love of Jesus Christ is with someone you know and care about. After all, I think you all believe that I'm being honest and open about cancer; how could I not be just as open about something infinitely more important!

Sincerely,
Ian, Rachel, and Audrey.