3rd Week of Phase 1 Treatment - Complete

There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something better tomorrow. ~Orison Marden

Another week down....only 3-1/2 weeks more to go in this phase (well technically, that would be 19 radiation treatments, 28 more days of chemotherapy)....oh happy day!

I've been pretty tired this week and of all things came down with a respiratory infection. The doc put me on a z-pac antibiotic which has helped tremendously. No more fever, and on the road to recovery from that!

My hair is now beginning to thin in the spots were the radiation is focalized. Although I knew this was going to happen, it's kind of thrown me for a loop. I'm working to get over that! I know, it's only hair.
The condition of the body has little or no relationship to the condition of the spirit.

I hope that everyone had a wonderful Christmas spent in a meaningful way with those you love and care for...after all, this is what it's all about. I am forever grateful to all of you...my family and friends, who have been so prayerful, supportive and encouraging, you have changed my life with your outpouring and sharing of these gifts.

The Lord replied, "When you have seen only one set of footprints, My child, is when i carried you."

I'm focusing toward Week 4, so bring it on!!!

Peace,
Sandy

2nd Week of Phase 1 Treatment - Complete

But those that hope in the Lord will renew their strength. They will soar on wings like eagles, they will run and not grow weary, they will walk and not be faint. Isaiah 40:31

Week 2 of radiation (10 days!)...DONE! 13 days of Chemotherapy...DONE! Yay! But it hasn't been without a price, hasn't been an easy week for me. I've been pretty hard on myself as I'm trying to cope emotionally with the fatigue that is setting in. I don't like this feeling one bit. It's been humbling to discover that I can only do so much and need to ask for help...which is very, very difficult for me. So my prayers this week have been focusing on letting the Lord carry me on this journey and to not resist help when it's offered.

This 'fatigue' business....it's a different sort of tired feeling, unlike any tiredness I've experienced before. I am very disciplined (to a fault!) and have always pushed and challenged myself to move forward in everything I do, but I'm struggling with being able to do that with this. I know...I know...I can hear all-you-all are saying..."Be kind to yourself, quit trying to make yourself do something when your body is telling you that you need to take it easy." And of course, all-you-all would be right!! But you see, I'm a bit stubborn (ha!..just a little bit!), so it will take me a while to finally drill that concept into this thick head of mine. ...I continue to be a work in progress!!

Alright...enough already of digressing into a pity party!! As Week 2 ends, statisically making me about 30.3% complete with Phase 1, I'm looking outward to Week 3. I CAN do this...I'm DOING it everyday..and I WILL continue to do it! My faith in God fills me with hope and confidence.

Please continue to keep me in your prayers.

The Lord is with me. I will not be afraid. Psalm 118:6

Onward to Week 3...

Peace and hope,
Sandy

Speak kindly.Live simply.Care deeply.Love generously.
Leave the rest to God.

First Week of Phase 1 Treatment - Complete

I stand firm and steadfast with God and all my 'healing supporters' in my fight against this disease . I know I'm already winning the battle.

My first week (5 days) of radiation is complete and 5 days into Chemotherapy...woohoo!! I have felt okay...several headaches, but nothing that extra-strength tylenol has not been able to take care of. Although today was a little worse than the previous days, a little stronger headache and starting to get a bit tired. I do tend to push myself, so today I came home from work and took a nap. So unlike me, however I must admit...so necessary!! But...only 5 1/2 more weeks of this phase!! They say the next couple of weeks will get a bit rough, but I remain up for the fight, because I know God is healing me and I believe in miracles.

I'm sorry if I sound like a broken record, but I don't want to take for granted all the wonderful prayers and support I have in all of you. I wouldn't be able to stay as strong as I am if not for everything that you all have done for me.

Crisis breeds transformation. With transformation HOPE is born. With HOPE, we can accomplish ALL things. I'm going to be LIVING proof!

Hope and Peace to all...
Sandy

Sharing an awesome email conversation with my sister Tracy

Email from my sister Tracy dated 12/05/2009:
San,
I just wanted you to know that I love you. I will be thinking of you on Monday at 6:15. Let me know how "the gathering" goes tomorrow. I am disappointed that I am missing the service.

I am in such awe of your strength, courage, support and faithfulness. I don't know how you do it. I am praying for you always and wish it was me instead of you going thru all of this. I continue to struggle with the why and know I should not but do anyway......

I am hopeful that I can get you down here in the near future for the healing power of the ocean and to recharge your batteries. Mom seems to like it here. I am glad. It unfortunately is in the 40's and windy. Rather like St. Louis weather but hoping for improvement during the week. The ocean tonight was very calm with a gentle wave and crisp clear water. Breathtaking. A beautiful sunsest also. Hopefully I can get some pictures.

Thinking of you always and loving you forever.

Trac
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
My reply to Tracy on Sunday morning, 12/06/2009 :
I love you too, Trac. Thank you for your note.

I was actually laying in bed this morning kind in wonderment of how I am doing this too. But, you know what...I really, really do feel God with me and carrying me. If he wasn't, I know I would be a total wreck. I feel him..his strength...it's amazing.

I honestly keep going back to these two Bible verses. The first one is Matthew 6:27..."Add who of you by being worried is adding a single hour to his life?" The other is Matthew 9:22...Jesus turned and saw her. He said,
"Daughter, be encouraged. Your faith has made you well." And the women was healed at that moment.

These verses have made me realize the total lack of contol I have over all of this. They are telling me that I have no choice but to turn ALL of this over to God. He's healing me Tracy, I know it, I just feel it.

I'm not saying, by any stretch of the imagination, that I am not getting down occasionally...'cause I am. I get weapy and start to question why this is happening, what's the reason God chose me to walk this road. But every time that's happened, I tell myself a different story (sound familiar...I really took that sermon to heart!) and ask God to lift me up again....and he does, he just does. And actually as I'm thinking about this and typing to you ...I think a small miracle has occurred...God has finally got me to realize that I don't need to be in control of everything. Wow....that really is a miracle!

The other thing too, that is so, so important to me...is that as all of you see my faith and strength....you all will find the same and be comforted by that. I want to show by my example that we can face anything, but to face it we have live in trust, not fear. (another sermon take away!) I didn't realize it before, but I fully, totally believe that now.

I do frequently think about the email you sent where you mention a conversation between your friend Katie with breast cancer and the Nun, where they talked about living many more years and why do we expect to live even another day, why do we think tomorrow comes with a guarentee. This is so true...I just always took it for granted and now I don't. So....I am waking up thankful for everyday and gifts and opportunities it brings.

You know what, Tracy, I am really, really lucky. I never realized how many people cared for me or cared enough about me to reach out, pray for me and support me. Now I know....it's a very special feeling.

Have a great week. I'm glad Mom went with you, I hope you both recharge too and have a relaxing week in Florida. Be safe and talk to you soon.

Love you always..
~S
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Tracy's email reply on Sunday evening, 12/06/2009:
Where do all of these inspirations come from? You are amazing. I am thinking of you. Good luck tomorrow. I will set my alarm and be praying that a peace comes over you when laying there, so that it goes by quickly and easily.
Love T

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
What an awesome family I have!!

First Treatment Today - December 7, 2009

I know the plans I have for you. They are plans for good and not disaster, to give you a future and a hope. Jeremiah 29:11

I mentioned in my last blog update about the start of my treatments...well... I started today!! My appointment time was 6:15am. Most of you who know me well, know that I don't like being late for anything. So my 'prompt' self was at the Cancer Center at 6:05am. They took me in the radiation room at 6:09 and got down to business. Oh boy...I'm really gonna have to work at finding 'my happy place"!! Actually I prayed for calmness the entire time...which really did help. I also had the healing prayer quilt over me...that gave me a sense of peace as well. I'm taking that thing with me every day!!

Why is it though, that when you know that you can't move, you inevitably have a spot that just has to be scratched?? The technicians put my mask on, and then of course I needed to scratch...LOL! I said.."Wait, you gotta take this off, GAH!! my nose itches!!" I also wanted to say, "Do ya have to bolt me down so tight? I promise I won't move...really!!" ..but I didn't say it. Besides..I'm sure they would NOT have NOT let me wear the mask anyway. So they started the radiation...hit me beams in 3 different spots. The machine makes a buzzing sound when the radiation is on. I didn't feel anything, but it''s a kind of wierd, eerie noise which reminded me of a movie where a patient is undergoing 'shock treatment'. Thank goodness, I don't need that!!! Anyhow...it all went well and time did pass quickly. I was actually back in the car by 6:25am and on my way home and then made it work by 7am. It took me longer to drive there and back then the treatment appointment.

This morning I also started Temodar, which is the chemotherapy drug; Zofran, which is the anti-nausea drug, and an antibiotic, so as my immune system wears down, I won't get pnuemonia. My goodness...all the rules you need to follow with this stuff. But, I have it all written down, organized in a folder (No really....I'm not too anal rententive!) and I ended up putting everything in a day-by-day pill box, just to keep straight what I've taken and/or not taken. I for sure don't want to mess anything up with this.

As the day has worn on, I'm feeling fine..just a bit of nausea, but nothing that I'm sure another Zofran won't help. Thanks again for all the prayers everyone. I had many phone calls, emails and IM's today asking how I was feeling..thank you everyone for your concern...so far so good. Tomorrow is another day...looking forward to it!!

If God brings you to it, He will bring you through it.

I remain enveloped in peace and hope,

Sandy
Speak kindly.Live Simply.Care Deeply.Love Generously.
Leave the rest to God.

Thursday, December 3, 2009: Radiation and Chemotherapy - Phase 1

"Do not be anxious about anything." Philippians 4:6
However....I am anxious to get my started on my treatments.....let’s get this healing process show on the road, folks!! I begin on Monday, 12/07/2009.

I met with the Radiation Oncologist at St. John’s on Wednesday morning, 12/02 and we talked about the 'plan'. They made the 'mask'. Actually it's more like a big mesh face helmet that will limit the movement of my head during my radiation treatments. That will be a little freaky, as I am somewhat claustrophobic, but it's a necessary apparatus that will ensure that I don't move my head, allowing the radiation to target the exact same spot on my head each and every time. As I lay there, confined, during radiation treatments, I will have to continually remind myself of the objective, so that I don't freak out when I can't move. I’m thinking maybe closing my eyes might be a good idea!! Treatment should last about 15-20 minutes.

So...as I have mentioned in previous posts, my Radiation Treatment will be a 5 day a week regimen for the next 6-1/2 weeks. So I start at 6:15am on Monday, 12/07/2010 and end on Friday, 01/22/2010. (Beginning on Tuesday, 12/08, my timeslot moves to 7 a.m....a little better, eh!) I'm sure some of you said under your breath with a raised eyebrow...7 a.m....you crazy girl??? I am an early riser, I just want to get in there and gitter done!!

I met with my Medical Oncologist at St. John’s Wednesday afternoon, 12/02 and discussed how I am to take the Temodar, which is the chemotherapy drug. I start that on Monday, 12/07 as well. It is in pill form, so I will take this medication at bedtime, in hopes that if I have nausea, I will sleep through it. And that’s a good one…since I’m not sleeping well…we’ll see how that works out for me.

The results of the MRI that was done post-op on 11/20, which was 16 days after surgery, showed a very small spot in the area where the tumor was removed. They couldn’t tell whether it was tumor growth or scar tissue, but the doctor was cautiously optimistic that if it was tumor growth, the radiation will take care of that spot. I’m not worried about it; because I am trusting God is healing me!!

So there you have it…..This is phase 1 of treatment. No doubt it will be a long and rough 6-1/2 weeks, but I am up for the challenge. I know I’m going to be tired and probably sick, but God will carry me through this and make me stronger! After this phase, I will begin another round of Chemotherapy, but I'll get into that as I get closer to the end of this phase. I'm taking one day at a time and keeping in mind that everyday is a gift.

Once again, I must tell you that I am forever grateful for all of my ‘prayer warriors’ and extended healing family for your endless prayers, your inspiration and strength which continues to lift me up on a daily basis. I am still amazed at the outpouring of support by everyone, people I know and don’t know...thank you, thank you, and thank you!! I am so incredibly touched and I feel the power that is directed toward me that there is no way I can lose this fight. I am so lucky to have you all on my side.

“Don’t get discouraged and give up, for we will reap a harvest of blessing at the appropriate time.”
Galatians 6:9

Things are in good hands. Our Lord and Creator of the universe knows what is going on in our lives and keeps watch over us as we come and go, both now and forever.

I will blog again soon.

Peace and blessings to all,
Sandy

Siteman Cancer Center visit to Medical Oncologist - November 25, 2009

And these signs shall follow them that believe; In my name shall they cast out devils; they shall speak with new tongues; they shall take up serpents; and if they drink any deadly thing, it shall not hurt them; they shall lay hands on the sick, and they shall recover. Mark 16:17-18

We met with the Medical Oncologist at Siteman Cancer Center on Wednesday, 11/25. I can tell you that talking to all of these doctors has been very informative and we continue to learn more with each visit. They have all been saying pretty much of the same thing, so hearing the consistency of their message is good and it just plain helps me to absorb the information and better understand this disease. The purpose of going to Siteman was to learn of any clinical studies available and then make the best decision for my situation based on timing and candidacy.

Siteman currently has a couple of clinical studies ramping up. This doc thinks that one of the studies "Study-825" would be a good one for me to participate in. It is a clinical trial using the standard radiation/chemotherapy treatment, but with an additional drug called 'Avastin" that would be given simultaneously during the standard treatment. Avastin is a drug that can interrupt the body's ability to grow new blood vessels causing the tumor to shrink and also may eliminate poorly formed blood vessels in tumors that would result in improved blood flow allowing better delivery of the chemotherapy drugs. Currently, Avastin is used only when/if they see a progression in tumor growth after standard treatment and have seen some success with it. So, the purpose of the study is to determine if they have more success rate with its use during standard treatment versus as an 'add-on' at the end of treatment. This study has 700/800 participants across the world, I would be the 2nd patient in STL on this study. Downside...can't get started for about 3 weeks because of more tests. Yikes...in my mind that's too long to wait to get started. Another downside....placement on the drug is random, meaning I have a 50/50 chance of getting the placebo or getting the Avastin, won't know what group I would fall into.

The other study, CT-322, that I could or could not be a candidate for based on other tests on the tumor tissue would be for the use of a drug called 'Celingitide' in addition to the standard treatment. This drug has an effect on the proteins, cell inhibitors...blah, blah, blah. My tumor would have to be of a specific status, which they don't know that answer yet without more tests...causing more delay in treatment. This treatment would be administered in IV form on a scheduled basis.

So....what does this all mean? Leaving Siteman Cancer Center yesterday, my mind just kept going back to that reality of I don't think I can afford to wait on more tests to determine if I am really a candidate for these studies. I can't stand the 'hurry up and wait" mentality when I am now 3 weeks out in my surgery recovery and we need to get down to business and get treatments going.

So, I called my docs at St. John's and have everything set up there to get started mid next week. My plan is to continue to research if there are any other studies anywhere else once I’m on the standard treatment. That’s always an option, but fully knowing I could knock myself out of a study because of it. But, this gives me piece of mind that we are moving forward.

I continue to remain strong in my faith that God is healing me. Whether he assists the doctors in my healing or blesses me with his healing hands, HE is with me and carrying me to win this fight.
I am the Lord that heal thee. God has promised and he will deliver!

A little housekeeping detail…I know that I have not responded to the many, many, many emails, cards and notes that all of my ‘healing supporters’ have sent me and I apologize for that. Publicly, I would like to thank EVERYONE and please know that I have read and re-read them ALL. You all have brought me such comfort and strength and you continue to do so every day. Knowing that I have so many supporters and prayers all around me is carrying me on this journey. I appreciate and love you all. Thank you for sharing your compassion and love with me.

Have a wonderful Thanksgiving Day. Peace and love to all,
Sandy

Siteman visit to Radiation Oncologist - 11/24/2009

Jesus turned around and when he saw her he said, "Daughter, be encouraged! Your faith has made you well." And the woman was healed at that moment. Matthew 9:22

We consulted with the Radiation Oncologist today at Siteman Cancer Center. They offer the same standard radiation treatment as St. John's, but they can't get started for a couple of weeks because they need to make a simulated impression mold of my head. This molded impression will be used to set the focus and target the radiation to the tumor site along with limiting movement of my head so the radiation is beamed to the exact same place each and every time. St. John's can make this impression and have it done in a day....what's up with that??...why can St. John's do it faster than Siteman?? Ya know, I'm not real interested in waiting a couple more weeks for Siteman.....daylight is burning here folks!!! I am anxious to get started on my treatments so that the Lord and the Doctors can get down to the business of healing me!!!

Here's the regimen for daily radiation therapy: Focused radiation to the tumor location 5 days/wk for 6 1/2 weeks. Each radiation treatment last about 20 minutes. Side effects will be temporary patchy hair loss in the area were the radiation is focused, (I guess I'll just part my hair differently...probably have a 'big comb over!!" ..yikes!), redness or irritation in that same area, possiblity of headaches, nasua, vomiting, blood clot and oh ya...Fatigue! Well...we'll just see about that part! My type A personality will probably get the best of me on this side effect! Possible long term side effects will be slow hair regrowth, normal brain tissue damage, possible return of original symptons and fatigue could be slow to wear off. It is was it is!

Today I went ahead and made an appointment with St.John's for Wednesday of next week (12/2), they can make the mold and set my schedule all in the same day. Depending on the outcome of tomorrow's consultation visit with the medical oncologist at Siteman, we will make the final decision on where I'm going. Today...leaning toward St. John's. Stay tuned...more to come.

As we consult with these doctors and continue to learn more about Gliosarcoma, I find it encouraging that they have been impressed with how healthy and strong I am, the visible size of the tumor (1.6cm or grape size) and encouraged that the surgeon was able to cleanly remove the tumor that was visible. This is all good news....thank you Lord....I'm telling you all, HE is right here with me!!!

Make it a great day everyone, thank you again to all my prayer soldiers standing as a united entity with me on this journey....we are all so blessed and have so much to live and be thankful for!!! You all inspire me!!

Peace and love to all,
Sandy

11/19/2009..First update to everyone on Thursday (Just adding to Blog)

Hi everyone,
I want to keep my support system updated on what's going on with me...I will try to send emails as I continue to learn more. Feel free to pass this information on to anyone you know...the more prayers I have the more God's healing touches me.

I know I'm missing some emails, so if you forward this on, please let me know to whom you forwarded and I would love to add them in my contact list.

I cannot tell you how touched I am by the outpouring of prayers of healing and strength and support.....I am truly the most blessed person on this planet!

Here's an update from my Radiation Oncologist consultation on yesterday, 11/18/2009....

St. John's is proposing that I don't need overall head radiation therapy, only radiation concentrated to the surrounding tumor location. This means that I probably won't lose all of my hair. The doctor seemed to be encouraged by the size of the tumor, as it wasn't as big as he has seen, meaning that he thinks we found it at a good time, however, they do know they didn't get it all, but they were able to get what they saw. Radiation will be 5 days a week for ~6 1/2 weeks. There are other radiation therapy options if they feel this is not working. However, radiation usually is one time therapy, we'll have to see how it goes. We will probably start right after Thanksgiving, he doesn't want to wait because time is ticking. He will treat this as aggressive as he can...which I told him is what I want to do. I will have a lot of fatigue and most likely some short term memory loss, but I can deal with that. I have another MRI done tomorrow night, so he can see the post-surgery site prior to the beginning of treatment. I left there feeling very comfortable with this doctor and he works very closely with the medical oncologist I saw at St. John's, who I see this afternoon for the results of my body scan from Monday.

I still plan on keeping my consulting appointments with Siteman Cancer Center next week to see what they have to offer. I'm really anxious to continue my healing journey!!

Peace,
Sandy

Speak kindly.Live simply.Care deeply.Love generously.
Leave the rest to God.

11/20/2009 - Emailed "Note from Sandy" (Updating Blog)

I can tell you for sure that I never wanted to be the center of attention this way…but here ya go, there are some things we get in life that we would never in a million years have asked for! But, in the words of one the strongest men I know, my Dad and angel watching over me, Gene Wahlig…..”We have no choice but to play the hand we’re dealt!”

I am so incredibly moved by the outpouring of love, prayers, support, and encouragement. I don’t know how to even begin to express my deepest, deepest gratitude to all of you who think enough of me to send cards, emails, flowers, food, including me in your prayers and your intercession on my behalf to our Father. I am truly humbled, thankful and amazed every single day.

The Lord, my family and all of you as my extended ‘Healing Support” family are keeping me sane through all of this. I feel I am doing remarkably well, (haven’t had to go on Zoloft..yet!) because of all of the love and support around me. I am at peace that I am in the Lord’s arms as he is carrying me through this journey and I know I am being raised up and I TRUST that HE is healing me at this very moment, I absolutely, undeniably feel it.

You all have been gift and an inspiration to me…..thank you!!

BTW…. my CTscan done on Monday came back clear, meaning they found no cancer anywhere else….so that’s great news!

Please, please keep the prayers flowing…I want to be on every prayer list there is!!

Peace and love to all,
Sandy

From the beginning....Event Timeline

This timeline outlines how we got to this point.....
- Last 2-3 weeks of October, 2009 - Some tingling feelings on my right cheek and around my mouth. The tingling seemed to gradually become more frequent.
- Sunday, Nov 1, 2009 - had a some tingling in my check, my tongue went numb and began to slurr my words and had some confusion for about 5 minutes. My pointer and middle fingers on my right hand went numb during the same time. Felt very drained and then concerned maybe I was having a stroke.
- Monday, Nov 2, 2009 - Went to work, called the doctor. Went to his office at 10:30am and described my symptons...he sent me straight to the hospital concerned I could be having a stroke. (In hind site, this would have been the blessing!) They actually drove me to St. John's Mercy Med Ctr. After the Emergency Room triage, they decided to admit me in order to run more tests. I was interviewed by the Neuro doctor and then had a CT scan. The doctor came in and told us the news....A "worriesome" tumor was found close to the surface on the left parietal lobe of my brain. The fortunate thing was that is was close to the surface and was operable.
- Tuesday, Nov 3, 2009 - Had an MRI to get more views and a better idea of what we were dealing with. Neuro-surgeon, Dr. Tom Forget, showed us the pictures of the tumor, which was about 1.6 cm or grape-size. It definitely needed to come out...the sooner the better.
- Wednesday, Nov 4, 2009 - Surgery, 4pm to remove the tumor. Priliminary pathology told them is was cancer. 7 inch incision on the left side of my head....Recovered in ICU until Thursday.
- Thursday, Nov 5, 2009 - Moved to a floor room, able to take a shower..yay!
- Friday, Nov 6, 2009 - 2 days after brain surgery...Home from the hospital.....crazy!
- Continued to recover at home.
- Wednesday, Nov 11, 2009 - Appointment to see Dr. Forget for pathology results....Gliosarcoma....GAAAAHHHHH!!! He also removed the staples from my head...this part didn't hurt....hearing the news part did! ;.-(
Had an appointment immediately following with the Medical Oncologist, Dr. Susan Partridge to consult on treatment. OMG...so much to think about.
- Continued to recover at home until Monday, Nov 16, 2009.
- Monday, Nov 16, 2009 - CT scan of my body to ensure cancer is no where else....good news...it's no where else!!
- Tuesday, Nov 17, 2009 - Back to work!! Great diversion...great to feel productive again!! Also, had a lunch time prayer service at my house with family and friends and was annointed and blessed by my good friend Carolyn's father who is a minister. It was awesome and moving and I know and trust that God is healing me. Very moving experience.
- Wednesday, Nov 18, 2009 - Met with Radation Oncologist, Dr. Jay Stroud at St. John's to consult on radiation treatments.
- Friday, Nov 19, 2009 - MRI of my brain..again..post surgery. I think they still left some brain in there...thank goodness!!
- Scheduled to consult with Radiation and Medical Oncologists at Siteman Cancer Center on 11/24 and 11/25. Will blog on how that goes!