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July 25, 2013 / toriscancerjourney

07/24/2013 Update

I can hardly believe the year is over halfway through!  So much has happened and yet the time seems to never be enough to get everything accomplished on my ‘to do’ list.

I completed my course of nasty chemo with the Taxotere on April 15th. (I found it ironic that I completed TAXotere on the IRS income tax filing date). The doctor ordered another CT scan to give us a ‘new’ baseline for future reference. The scan showed everything is ‘stable’. The cancer is gone and only ‘scar’ tissue is apparent in all of the prior affected areas.

My next infusion is Monday July 29th and we’ll be scheduling the next CT scan for August.

I continue with the Herceptin and Perjetta Antibody infusion every three weeks. I also am receiving an osteoporosis drug to strengthen my bones.

My last dentist appointment discovered I have many cracked teeth from this process. My body is generally dried out, (I use eye drops to get my eyes open in the morning, I have prescription toothpaste, I have stock in lotion, etc…), and I apparently grind my teeth while sleeping.

My heart scan continues to be in the mid-range. It was at 54% and moved up to 58% on the last scan in June 2013. More exercise on my part will continue to keep the output percentage in an acceptable range.

I had done some research a while back regarding an alternative treatment that is located in Texas. Recently a series of events and various conversations lead me to a similar treatment regimen located right here locally. Even more exciting is it’s the naturopath doctor I used to see prior to 2011 and the diagnosis. I love to watch how God unravels His plan before me!

The local medical group is called Health & Wellness Institute Cancer Research. The website for more information on this treatment is: hwicancerreasearch.org.   There are several videos that explain the nuts and bolts of it if you’re interested. The short version is they ‘train’ the immune system to identify and fight the cancer cells. Their partnership is with the Dana-Farber Cancer Institute in Boston.

Here’s the tricky part from my point of view. It costs money and virtually nothing is covered by insurance. The initial need is for $18,000.00 for the first course. Not knowing how the treatment will affect me and my cancer, the typical initial plan is for 3 or 4 courses of treatment. Over and above that is general supplementation of nutrition and vitamins which adds another $1,500.00 per month.

Would you please pray with me that the funds would become available for this treatment? I had 15 vials of blood drawn today and it is being shipped off to Dana-Farber along with the initial $7,000.00, (which was generously donated), they need to start their customization process. And if any of you feel lead to donate to my treatment there is a link you can follow on the hwicancerresearch.org website that will link to a firstgiving website so the funds get directed to my name.

We are confident that God is not done with me yet. He orchestrated a series of events that lead to this local treatment. I don’t believe it is an accident.

It has been just shy of 2-1/2 years since this particular roller coaster ride began. I am still overwhelmed at God’s grace and mercy through the whole process. I have had only one cold/flu in that time. I have not been nauseous with the various medicines nor have I needed any of the anti-nausea prescriptions. I have maintained a fairly ‘normal’ lifestyle, (I can ignore the need for more than ten hours of sleep each day). I have experienced no lymphedema swelling as a result of the surgery almost 2 years ago. I like my hair extremely short. I have friendships with people I may have never met as a result of my many appointments.

Given all of that, I am truly blessed. I haven’t even mentioned my loving husband, precious son, extended family, supportive church family, and prayer partners from all over! God is so good. I am grateful He has not given me what I deserve!

The night is late and my day tomorrow is again filled with plans of errands, gardening and play!

Thank you so much for your invaluable prayers and words of encouragement. I am eternally grateful! Enjoy the warm weather!

I will post a song tomorrow…..

January 2, 2013 / toriscancerjourney

01/02/2013 Update and General Information

Happy New Year!!

I am finally updating you all to my progress. I still praise God for every day I wake up and get the privilege of spending another day enjoying the many blessings of this life.

I have been, for the most part, healthy these past many months. I have had the opportunity to share God’s love with others in arenas I would have not otherwise have had.

I am right this very minute sitting in the infusion room hooked up to an IV as I have been doing every 3 weeks since March 2011. I have had an antibody, (Herceptin) since the beginning. June 2012 there was a spot in my left lung that came visible in the scan that we were “watching”. September’s scan revealed that spot had grown. We added the 2nd generation antibody, (Perjetta). The only side effects, (that I will share with all of you), to these medicines  is fatigue.

My heart scans  have showed slight improvement each time. I am able to breath easily and well. Prayers have been answered.

My most recent CT scan on 12/31/2012 showed that prayers have been answered!

Not all is well, though. I need more prayer:       Lungs are clear; lymph-node on left shows nothing unusual,  liver is clear as well.  New area of concern is 3 different locations in my spine show what the doctor is calling lesions. One each on T1, T7 and L5.

Chemo started today. Still on & Perjetta, now adding Taxotere. Hair is overrated anyway.

Waiting for insurance approval for Zoledron which is used for osteoporosis. They want to use it so the bone will regenerate to replace what the cancer has ‘eaten’. I have a small fracture at one of the locations and a compression at one of the locations. I have lost some height to put it into understandable terms.

While I am excited about the areas that were of concern, I am a bit exhausted at the prospect of this all again. I feel like I was just starting to get ‘on top of things’ so to speak.

I already feel like I sleep so much and am always tired. To think I will be even more tired is a bit overwhelming.

I am not thinking about how big my storm is, I am thinking about how big my God is. He is the Creator of the universe and the Great Physician. I will continue to lay this all at His feet.

I don’t have a hymn book with me, but this one I know by heart:

Lord, as I seek your guidance for the day. I find my thoughts unyielding. Confusion crowds my way. But then when I bow to You, the challenges You guide me through. Your promises are ever new. I claim them for today.

Your will cannot lead me where Your grace will not keep me. Your hand will protect me, I rest in Your care. Your eyes will watch over me, Your love will forgive me. And when I am faltering, I still will find You there.

Each new days design is charted by Your hand. And graciously revealed as I seek Your master plan. Keep my footsteps faithful, when from You I go. Return me to the joy that Your blessings can bestow.

Your will cannot lead me where Your grace will not keep me. Your hand will protect me, I rest in Your care. Your eyes will watch over me, Your love will forgive me. And when I am faltering, I still will find You there.

My day here was originally scheduled to take about 2-1/2 hours, but is now 4-1/2 hours.

If you recall way back when this started, (almost 2 years ago), I was enrolled in a study for a drug being called TDM1. I received the placebo arm at that time. There is a rumor in the oncology arena that the FDA will be approving it in February 2013. As soon as that drug is available the switch will be made from Taxotere to the TDM1. With that there may be a chance I won’t have time to lose my hair on the Taxotere.

It is all in God’s care.

I thank you in advance for your prayers. I am honored and humbled by your care for me and my boys.

God bless you all!

Love, Tori  :)

 

March 7, 2012 / toriscancerjourney

CT Scan Results & General Update 03/07/2012

It’s late Tuesday night, (ok, early Wednesday morning), and I feel the need to get this done so you may update your prayer group with the news.

CT scan took place last week on 02/28/2012 with minimal challenges. Running an IV in my right arm is proving to be a challenge for the folks that must find a vein for use. The vein is easily seen, but once the needle gets past the skin, the vein must be ‘relocated’ several times before the needle actually find the vein.  Bruising is now the norm.

My reward was lunch out with a wonderful friend. <3

Doctor appointment on Monday 03/05/2012 was attended with my husband. He doesn’t like the way I translate the information, (he thinks I am just too happy :)  ). I won’t keep you in suspense; My scans are clear. The special word used this narrative from the technician reporting was “grossly unremarkable“. (Tell me you didn’t laugh! – I wouldn’t believe you!).

There are things to note, however, such as the stone in my gallbladder, which is too large to pass, could possibly cause concern later. (don’t ask me for further explanation – I don’t know).  A cyst in an ovary, nothing to be concerned with, but noting it is present.  Things like that.

I am more relieved than I thought I would be.  I am grateful beyond explanation. I weep at the very thought of the many prayers that have been sent forth to the Creator of the Universe on my behalf by saints that have never met me or my family. I am overwhelmed by His grace and mercy.

March 13, 2012 marks our son’s 11th birthday – and I can’t imagine a better present than this news.  March 1, 2012 marked 1 year since my diagnosis. Another milestone to celebrate – winter is almost over and, to me, a ‘new’ year is just beginning.

The doctor has given her blessing for me to resume as many normal activities as I am able.  The herceptin infusions will continue every 3 weeks.  Blood work and doctor appointments will be every 6 weeks. 

Since my last heart scan actually showed an increase in its function, the next MGHA Heart Scan and CT Scan will not take place for 3 months.

When you read this post or share it with those who have been praying, please know that I have wrapped you, and those that have prayed, in the warmest, tightest, most grateful hug of thanks – tears of joy and all!  THANK YOU SO VERY MUCH FOR PRAYING! :)  Please don’t stop praying!

Tho’ the pathway before you uncertain may be, Trust the Lord no good thing to withhold back from thee;  He is perfect in wisdom and faithful to bless.  Trust His Word;  in His time He will give you His best.

They that wait upon the Lord shall renew their strength;  They shall mount up with wings as eagles.  They shall run and not grow weary, they’ll walk and not faint.  Wait, I say, wait on the Lord.

Be not weary in waiting, for love suffers long;  If you faint not, you’ll reap when the harvest is come.  Run with patience the race, as you rest on His Word.  For your testing will teach you to wait on the Lord.

They that wait upon the Lord shall renew their strength;  They shall mount up with wings as eagles.  They shall run and not grow weary, they’ll walk and not faint.  Wait, I say, wait on the Lord.

With a humble and grateful heart, goodnight. :)

 

February 15, 2012 / toriscancerjourney

2/15/2012 Infusion Update, Heart Scan Results

Today is Wednesday, 2/15/2012. I have, for the most part recovered from doctor appointments on Monday, 2/13/2012. I took a four-hour nap on Tuesday and was still able to sleep well for over 8 hours Tuesday night. I even received a dozen roses for Valentine’s Day from my hard-working and loving hubby.

Blood work shows I’m still anemic, but the numbers are slowly climbing.  All the numbers  are still on the low side of the normal range as of now.

Doctor appointment went swimmingly. No new information to be had. My heart function is continued as “stable”.

Infusion took place without any hindrances.  The staff at Providence Medical Cancer Partnership is phenomenal. (If you’re going to have to experience this journey, at least be pleased with the level of care you are receiving).

A friend’s mother has just received a diagnosis. My heart aches for the grief to be experienced, but my heart rejoices on the mercy and grace that will be had through the experience just for the asking. Psalm 91 has been a blessing to me through this. My prayers are for peace, comfort and strength. As well as complete healing.

We have investigated the Burzynski Institute in Houston a bit further. It will definitely have to be God’s plan. The preliminary costs for initial exam, records review and lab work is almost $20,000.00. That doesn’t include the fare to Houston, the hotel stay or the approximate $4,500 per month medication and maintenance fee. We did download all of the forms and information and will be praying to see if this is God’s will for us.

My next appointment will be for the CT scan on February 28th at 10:00 a.m. We will receive the results on March 5th, along with more blood work, doctor appointment and another infusion. We pray the scan will return completely clean so we can point to God’s merciful healing and sing His praises.

God continues to bless us through this trial. I will sing His praises regardless of the current circumstances. 

Thank you so very much for your prayers – I do covet them!

Jesus is exalted; Ev’ry knee shall bow to honor Him. Praise the Prince of Heaven; Join the angels and the seraphim. Though He rules creation, even though He reigns above, from His throne on high Jesus came to die; Taste His wondrous love.

Jesus sticks closer than a brother; Ev’ry moment He is near.  I know He never will forsake me; He has conquered all my fear. Jesus sticks closer than a brother; On His love I can depend. King of Kings, Lord of Lords, Conqu’ring Son – Though all of these, He’s my very best Friend.

Glory to the Savior, all my praise shall be to Christ alone; He is my foundation, He’s my rock, and He’s my cornerstone. Like a mighty fortress, He is evermore the same; Yet He died for me on Mount Calvary; Now I bear His name.

Jesus sticks closer than a brother; Ev’ry moment He is near.  I know He never will forsake me; He has conquered all my fear. Jesus sticks closer than a brother; On His love I can depend. King of Kings, Lord of Lords, Conqu’ring Son – T h o u g h  a l l  o f   t h e s e,  H e’ s  m y  v e r y  b e s t  F r i e n d.

 

 

January 28, 2012 / toriscancerjourney

1/28/2012 General update and PRAISE!!

Wow!! 7 weeks have gone by since I last updated you all.  The time, as I get older, seems to go so very quickly.  I don’t know how I had time to work full-time.  It seems all I can do to get dinner on the table once a day!

So, I just read my last post from 12/13.  The vertigo stayed constant until about  mid-January.  I ended up getting a sore throat 12/27/2011 that hung on tenaciously for 2 weeks or better.  Lost my voice for a week or so, and stayed home from all activity for 12 straight days.  I was getting very stir crazy by the time I finally got to go to church on 1/08. 

Miraculously, my voice, which I could not make ‘sing’ on 1/7, found its way to sing Sunday morning 1/8/2012.  I was astounded at the overnight answer to prayer. 

My left ear plugged up the first week of January.  I finally went to the walk-in clinic 1/19, (I avoided it as long as I could).  Thankfully, I did not have an ear infection, just congestion in the eustachian tube.  I was told to try decongestants which did nothing after a week.  I had a prescription nasal spray to try after that.  I finally picked the spray up from the pharmacy, but I procrastinated on using it just long enough for the ear to clear on its own this past week.  (Another praise – I don’t like using drugs, and the spray was a steroid).

As for treatments:  I completed radiation on Monday 12/18/2011.  It was a wonderful Christmas present for me and my family.  I was to have a follow-up check up with the radiation oncologist on 1/18/2012.  But, due to the snow and ice, I received a phone call from the nurse that morning to say, if I didn’t have any burning (I thought it an ironic use of the word), if I didn’t have any burning questions or concerns, then the doctor didn’t need me to come in.

I received my scheduled herceptin infusions on 1/03/2012 and 1/23/2012.  My next appointment is 2/08/2012 for another MGHA Heart Scan.  I will then have blood-work, oncologist visit, heart scan results and my next herceptin infusion on 2/13/2012.

The CT Scan will be scheduled for the last week of February, just prior to my next 3-week appointment on 3/05/2012.

Shortly after the diagnosis last March, I spent a great deal of time praying to God, asking Him to use this journey for His honor and glory.  He has indeed.  I have been the instrument of joy and blessing to others.  I don’t know how or when it happened, but I’m told I glow.  (It may just be the residual effects of PET scans, heart scans, CT scans and radiation therapy :o)  ).  God is so very good.

  • To date, over $250,000 has been billed to the insurance and my portion is shy of $2,000.  That is miraculous if not unbelievable.
  • My husband has employment that allows him to help around the house and during the day with various appointments.
  • His employment provides a consistent paycheck.
  • I have been healthy for an entire year up to that 2-week sore throat.  That is unheard of!  (Good Nutrilite vitamins do help).
  • I have prayer warriors across the United States.
  • I am able to sing God’s praises.
  • I have received so many meals, notes of encouragement and kind words.
  • I have been the recipient of countless acts of kindness from written poems, Starbucks drinks, fresh vegetables from home gardens, our lawn mowed, gutters cleaned and car washed.
  • Our son goes swimming with friends twice a week and to the library frequently with them.
  • I have not needed the prescription medications to keep nausea minimized – I experienced zero nausea.
  • I have only missed one infusion session due to a decrease in heart function.
  • Heart function returned in only 3 weeks. (As opposed to the 8-10 weeks expected).
  • I am able to take vigorous walks, run with family and dog to keep heart function healthy. (Not to mention wiping out the free radicals which cause dysfunction within my body).
  • Continue to home school our son.

I would not have known to even ask God for the blessings that He has bestowed upon us!  But God knew what we would need before we needed it!

I am indeed very grateful for your continued prayers!  I would love for you to join me in prayer for several concerns:

  • We are terribly behind in our school due to the daily radiation appointments for 7 weeks.  We would pray for completing our year by June 1, 2012.
  • Continued good health for all of our family.
  • Strength & stamina for Dave.  10+ hour days, 7 days a week is taking its toll.
  • That the CT scan will be clean.  If there is anything to see, that it will be large enough to see.
  • We are praying about and investigating a treatment option.  Dr. Burzynski of the Burzynski Institute in Houston, Texas has found a way to work with antineoplastons (and a bunch of other scientific, I’m not able to explain it stuff).  Essentially,  he has located with cancer patients certain ‘markers’ within our cells that are turned ‘off’ that should be ‘on’ and others ‘on’ that should be ‘off’. He has a way to change these “switches”.  So, he recommends conventional treatments for those with aggressive cancers to get them under control and then he can ‘fix’ things on the molecular level that allowed the cancer to begin in the first place.

 My prayers for you are for you to be as blessed as I am!  God bless you all.

The trusting heart to Jesus clings, Nor any ill forebodes, But at the cross of Calv’ry sings, Praise God for lifted loads!

Singing I go along life’s road, Praising the Lord, praising the Lord;  Singing I go along life’s road, For Jesus has lifted my load.

The passing days bring many cares, “Fear not,” I hear Him say, And when my fears are turned to prayers, The burdens slip away.

 Singing I go along life’s road, Praising the Lord, praising the Lord;  Singing I go along life’s road, For Jesus has lifted my load.

He tells me of my Father’s love And never slumb’ring eye;  My everlasting King above Will all my needs supply.

 Singing I go along life’s road, Praising the Lord, praising the Lord;  Singing I go along life’s road, For Jesus has lifted my load.

When to the throne of grace I flee, I find the promise true, The mighty arms upholding me Will bear my burdens too!

 Singing I go along life’s road, Praising the Lord, praising the Lord;  Singing I go along life’s road, For Jesus has lifted my load.

December 13, 2011 / toriscancerjourney

12/13/2011 MGHA Heart Scan & General Update

So, today is Tuesday and all of my appointments were yesterday. Another day that did not go according to my plan. Woke up on Sunday with slight vertigo symptoms.  I was still able to attend church and perform for the Christmas Program. Monday’s vertigo was a slight bit more intense, but manageable.  I was able to drive to the doctor appointment. The getting home part was, however, past my ability.  Enter, dearest husband, who has continually picked up “the slack” that I am not able. He drove to North Everett and delivered me home to bed, then ran out the door, almost late for work.

Radiation appointments have taken place without any breaks.  The Radiation Oncologist says my skin has held up remarkably well considering the intensity of the treatment.  Usually there needs to be a break so the skin doesn’t break down too much.  I believe that God has again intervened and planned this too.  As of last Thursday’s appointment with the Radiation Oncologist, (which takes place every Thursday), my treatment will be complete on Monday, December 19, 2011.  The countdown has begun!  4 to go!

Monday was the Oncologist appointment. Blood pressure was 105 over 76, weight increased by 3 pounds.  Heart scan numbers are “stable”, which meant Herceptin infusions will continue as scheduled.  Next MGHA heart scan and CT scan will be scheduled for February to determine future infusions and to “restage” the disease.  Herceptin can continue for up to two years provided heart function is maintained.

Next was radiation.  The last of the full area treatment.  The remaining treatments are specific to the scar area only which receives the electron beam and not x-rays.  Getting up off of the table proved to be problematic with the vertigo symptoms.  The building was extremely warm as well which did not improve my situation.

Finally, chemo.  Well, not really chemo.  Just the Herceptin.  It’s still in the chemo room and administered in the same manner.  And chemo is easier to say and type rather than infusion.  So, chemo.  That’s when things went south for me.  I was clammy and hot but my body temperature was 97.9, (normal for me).  Nausea had set in as well.  My blood pressure was down to 96 over 63. So, I texted hubby to come pick me up.  I didn’t think I’d be a good driver at that point. 

I slept for 3-1/2 hours and  remained in bed except to eat a PB&J sandwich for dinner.  The man-child was swimming and playing with friends thankfully.  Still able to sleep restfully through the night and wake up with minimal vertigo this morning at 7:45 am.  (I realize that is late for most of you, but it’s early for me these days). 

I’ve gained 3 pounds, which is not troublesome to the doctors.  It is probably due to my cravings of cheese, eggs, potatoes and popcorn with lack of desire for vegetables.  The chocolate covered raisins probably, might, maybe take a bit of the blame as well. :o)

When the ways of God unequal seem to be, and the trials He sends appear too hard for thee.  He has promised you His wisdom shall be given lib’rally: If you ask in faith with patience, soon His purpose you shall see.

Count it all joy, (count it all joy), when darkness clouds the path you’ve trod.  Trust in His Word, (trust Him), that the secret things belong to the Lord our God.  Count it all joy, (count it all joy), and for the crown of life endure.  Let your patience make you perfect and complete in all His will, and the grace of God employ to count it all joy.

As with Job, the Lord doth often hide His face;  Still He’s faithful to provide a secret place to escape from each temptation thru His all-sufficient grace, so rejoice in tribulation, and your trial now embrace.

Count it all joy, (count it all joy), when darkness clouds the path you’ve trod.  Trust in His Word, (trust Him), that the secret things belong to the Lord our God.  Count it all joy, (count it all joy), and for the crown of life endure.  Let your patience make you perfect and complete in all His will, and the grace of God employ to count it all joy.

Thank you again for your faithful prayer.  I know without a doubt that your prayers are what has made this all bearable.

Blessings to you all.  May you all celebrate the birth of our Lord and Saviour Jesus Christ with family and friends in the coming weeks.

November 22, 2011 / toriscancerjourney

11/21/2011 CT Scan Results, etc.

Today was one of those days where you ‘think’ you’re going to accomplish much, but in the end the day rushes by and you look back and say, “What just happened?”.

It started just fine, slept through my alarm.  :o)  Decided we could all use a bit of extra sleep.  Then flew out of bed when I realized I had scheduled an appliance repair and the repairman could show at any minute!  So, the day began, late.  The man-child wasn’t up either so school was only going to be a dream.  Husband borrowed my van to run an errand and of course the errand ran late.  Repair man showed up just before husband returned home with my van.  11:05 at this point and I’m to be in a ‘gown’ in North Everett in 19 minutes.  Right.

Somehow, God must have accompanied me on that trip.  Traffic was obnoxious and the rain was heavy, but I was at my appointment at 11:26 am!  Then an egg nog latte and book reading before the rest of the appointments.

Blood-work looks good.  Still anemic and that is not abnormal given the past 8 months.  Oncologist read the radiology report on my CT scan from 11/16/2011.  Essentially “the scans show nothing remarkable”.  Which she said, “is quite amazing” in itself.  So, the doctor appointment was brief, but positive.

Next MGHA heart scan is scheduled for December 7th to make sure the herceptin isn’t damaging my heart function. Next CT scan in 3 or 4 months.  The herceptin infusions will continue indefinitely. As long as the scans remain clear the herceptin is effective.

Had my infusion today as well.  Very uneventful, though busy.

A wonderful mom from soccer took the man-child swimming today during my appointments. (so, some school time did get logged!).   A dear friend showed up at my door this afternoon to rejoice with me.  Another dear soul delivered a beautiful and wonderful homemade cherry pie, (absolutely divine!).  Delivered dinner to my husband at work.  Then, finally, bought the Thanksgiving turkey.

So, the day did not accomplish what I set out to.  But, I can’t complain.  We serve a Great God!

Now, a very personal note:   I have never been more humbled than I have these past 8 months.  The love and prayers that have been displayed and said on my behalf is completely overwhelming.  I am so grateful, I will never, ever be able to say all of the words that would convey my gratitude.

A friend said the other day, “Please don’t take this wrong, but I truly envy the adversity you have been experiencing these past months.  You are having a walk with God that can never be experienced without the fiery trial you are experiencing.  It is amazing to watch.”

She is right.  I am indeed walking with God in a way I never would have without this experience.  I am so grateful He chose me.  While the joy that I am experiencing through this is wonderful, I still would not wish this trial on another.  But God knows best.

Thou art worthy, Lord divine, to receive this praise of mine.  To receive this grateful praise of mine.  Thou hast mercy shown to me, and my soul delights in Thee.  Evermore my soul delights in Thee.

Lord, I thank Thee for Thy love, draw my heart to Thine above.  True and faithful would I be, Jesus keep me close to Thee.

 

By Thy grace so full and free Thou hast bid me come to Thee.  Thou hast bid me rise and come to Thee.  Since Thy promise I have heard, I will take Thee at Thy Word.  I will trust and take Thee at Thy Word.

Lord, I thank Thee for Thy love, draw my heart to Thine above.  True and faithful would I be, Jesus keep me close to Thee.

Since I trusted Thee that day, Thou hast led me all the way.  Thou hast kept and led me all the way.  And some day in heav’n above I will praise Thee for Thy love.  I will sing and praise Thee for Thy love.

Lord, I thank Thee for Thy love, draw my heart to Thine above.  True and faithful would I be, Jesus keep me close to Thee.

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