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
Thursday, November 26, 2009
Tuesday, November 24, 2009
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
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
Sunday, November 22, 2009
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.
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
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
Saturday, November 21, 2009
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!
- 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!
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