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July 21, 2015 / toriscancerjourney

07/21/2015 Update

I continue to be amazed at how quickly time passes. I was warned as a child, “Don’t wish away your days, there’ll come a time when they go by so quickly, you’ll want them back.” My grandmother was wise.

I have accomplished all but one of my radiation treatments. Three spots on the spine takes a bit more time on the table each appointment, but despite the time taken for this task, I’m so grateful for the option instead of surgery. I dislike pain, the drugs that help the pain, and the inability to do what I consider to be ‘normal’ things.

As a work-at-home mom, I know others will relate, to not be able to cook meals, wash/dry/fold laundry, hand wash pots & pans, load the dishwasher, vacuum the floors & carpets, etc is beyond frustrating, it’s humbling. As before, we have been blessed with being surrounded by loving, giving friends, (and a hard-working 14 year old).

The radiation treatments on T1 have altered my ability to swallow food and liquids. Water is downright torturous. Thankful for juice and Izze soda. Perhaps not the healthiest of choices, but hey, life is short! ūüôā¬† Small sips (easier with a straw), and pea-sized bites prevent starvation and choking. For the most part my diet consists of cottage cheese, scrambled eggs, beans, cheese, rice, and fruit. OH! And root beer floats! ūüėČ What a wonderful time of year to be able to eat fruit! The abundance is magnificent! We have a “Box of Good” delivered weekly to our front door by a local farm called Grateful to have access to locally grown fruits and vegetables.

Most of the pain from the tumor pushing on my spinal cord has diminished. Later in the day is more ‘work’ to get through, but it used to be unbearable, so to be upright and functional is far superior! I am off all pain medications, (was taking 2 naproxen sodium every 6 hours).

The chemo-therapy began July 1. The drug is called “Kadcyla”, (think “Godzilla” – what a hoot!) I picture miniature sized imaginary dragons marching amongst my cells. Kadcyla is a cell-targeted chemo-therapy, meaning, the antibody, ‘Herceptin’, carries the ‘Kadcyla’ directly to the cancer cells where the Kadcyla has the ability to attach to the receptors on the cancer cell wall. The Kadcyla ‘goes to work’ when it identifies a specific enzyme only produced within a cancer cell. The Kadcyla prevent the cancer cell of ‘food’, ‘oxygen’ and thus ‘reproduction’. Traditional therapies targeted rapidly growing cells, which is why all of the unpleasant side effects were experienced. This therapy is so scientifically modern, I can’t quite help but be fascinated!

I will continue this chemo-therapy until further notice. There is a currently is a patient at the Providence Cancer Partnership that was in the original study for this drug. She’s been on it for four years with ZERO progression of disease. The only noticeable side effect is fatigue, (like none of us ever experience that anyway). I’ll take it – pick me!

Previous infusions typically took two hours, which included a thirty minute observation period. The first Kadcyla infusion, (or any drug for that matter), is slowed down to verify absence of an allergic reaction, (90 minutes), along with a 90 minute observation. The new time frame should be near thirty minutes total. Next infusion is Wednesday after my FINAL radiation treatment.

Then we proceed as normal. CT scan August 10th, Oncologist appt, labs, infusion August 12th and so on….

I am exhausted, exhilarated, humbled, grateful and totally at peace. Yesterday I weed for a couple of hours – something I’d not been able to do since about April. Today the only pain is from doing too much too soon. I can live with that. I’m looking forward to once again getting stronger, building up stamina and eventually back to choir.

Thank you for your prayers! God is so good – especially in these past four plus years. I can see His hand in every detail.

“Singing I Go”

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 trusting heart to Jesus clings, along life’s troubled roads, but at the cross of Calv’ry sings, praise God for lifted loads!When to the throne of grace I flee, I find His 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.

The passing days bring many cares, “Fear not,” I hear Him say. And when my fears are turned to pray’rs, the burdens slip away. He tells me of my Father’s love, and never slumb’ring eye. My everlasting King above shall 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! 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!

My grandmother and mom have been gone from this earth for 21 and 19 years respectively. I miss them a great deal daily. There are people still on this earth I miss as much. People that have decided the choices I’ve made in this life might be contagious or some such thing. Whether it be pride, arrogance, misunderstandings or false opinions doesn’t really matter. Is the loss of a relationship so trivial that you’d hold someone at arms length because you hold a differing opinion? We’re all in the same place, we’re born, we live, we die. Difference is, some of us have confidence without a shadow of doubt where we’ll be after we die. Aren’t you the least bit curious what I have that allows me to be joyful through what¬†could eventually, likely, take my life from this earth?

June 13, 2015 / toriscancerjourney

06/13/2015 Update

Well, it’s been a whirlwind couple of weeks since the MRI showed a tumor at T7 pushing against my spinal cord. We have experienced many ups and downs over the past four years, so why would the last two weeks be any different? They didn’t disappoint.

We met with the orthopedic surgeon on June 3. His plan is to remove any diseased bone at T7 and insert a screw between T6 and T8 to keep the space of T7 and then place a mesh screen that would protect the spinal cord. He told me I would be allowed to “hate him” for two weeks, then I should be in a great deal less pain and moving toward physical recovery. I must confess, at that moment, I had already developed negative feelings toward him. I truly dislike the thought of anesthesia, surgery, recovery, being unable to function and take care of daily tasks. He assured me recovery would be worth it. He also made it clear this was not to slow the progression of the disease, but for long term stability and quality of life. We sat on the information and prayed about it.

Our next appointment, the radiation oncologist on June 8. His was, to me a preferred option. We learned the difference between a blastic tumor and a lytic tumor. (A lytic tumor consumes the bone, so when the tumor is removed, there’s no bone). I have a blastic tumor, which means when the tumor is removed the bone, though weakened and¬†brittle, remains. {Praise God, again!) His recommendation is for three to four weeks of radiation. And while we’re at it, since there’s activity showing progression of disease on both T1 and L5, we can blast those too.¬†He had¬†yet to discuss with the surgeon, so we were missing the coordination between these two professionals.¬†The radiation oncologist would communicate with the oncologist after he had discussed with the surgeon.¬†More information to consider and pray over.

Next, the oncologist. Her schedule was full, so she came to visit me whilst I was hooked up for my every three week infusion on Wednesday. Her visit tied all the information together along with her recommendation. Thankfully, we had been praying God would close doors that we were not to pursue, and open the one as wide as a 747 hangar door. He answered mightily. Radiation for four weeks and chemotherapy to follow with a drug called TDM1. this is the drug that I was in a trial for in 2011. It was made available in 2013 and they are reporting zero side effects, I don’t believe I fall into a category that they have studied as of yet. Everything about this path, according to the professionals and doctors, does not take into account our great Creator, God.

How odd is it that I would prefer radiation and chemo over surgery? When you take into account the surgeon sloughing off diseased bone into my body, the possibility of infection and so many other possibilities. I prefer the less invasive options presented.

I have already experienced the radiation simulation, measurements and four¬†new tattoos. Radiation treatment will begin next Thursday. After all this decaying body has been through, you would think this whole process would be “no big deal”, and yet laying in those fashionable “gowns” in¬†a medical facility with strange medical personnel. Don’t get me wrong, they do their best to make you feel at ease, but there are so many other things a person would rather be doing in all honesty.

So, to recap: no surgery, (at least it’s not the plan just now). Confirmed presently at four weeks of radiation daily beginning June 18 and ending July 15. Chemotherapy to begin either July 1 at my next scheduled infusion or the one following on July 22.

I am reminded how fragile and finite our lives are here on this earth. I was chatting with an older lady in the waiting room for my radiation simulation. She lamented how miserable this life had been for her with all the losses of family over the past fifteen years. She felt sorry for her grandchildren. I shared with her the hope and joy I had in Christ my Saviour! To my sadness, she then claimed to be a Christian. Oh how my heart ached for her – she clearly did not have the same assurance that I have. That was the very moment my name was called to go back, sadly she was gone when I was released. I don’t have a clue for this journey I have been on, but I know when it’s done God will be glorified.

I am sure I have had an impact on many by the encouragement I receive, though all I do is get up each day and strive to follow God’s leading as wife and mother. I know I am not perfect, but I thank God every day that I’m not who I used to be. For those I’ve inspired, praise God, it’s His work, not my own. For those I’ve offended by not keeping you personally “in the loop”, I give my humblest apologies.

I am unable to count the times I have been asked, “How are you doing? No, really, how are you doing?” So, here it is: I’m good, truly, I am. Yes, I am in pain. Sometimes minimal, other times excruciating. I have not been promised a pain free life, so I am not surprised or disappointed by this. It reminds me to be thankful when I feel good. I know people personally that are in constant pain and don’t have much relief. I am blessed, and grateful, and loved.

He Lives; by Alfred H. Ackley

I serve a risen Savior, He in the world today; I know that He is living, whatever men may say; I see His hand of mercy, I hear His voice of cheer, And just the time I need Him, He’s always near.

He lives, He lives, Christ Jesus lives today! He walks with me and talks with me along life’s narrow way. He lives, He lives, salvation to impart! You ask me how I know He lives? He lives within my heart.

In all the world around me I see His loving care, And though my heart grows weary, I never will despair; I know that His is leading thru all the stormy blast, The day of His appearing will come at last.

He lives, He lives, Christ Jesus lives today! He walks with me and talks with me along life’s narrow way. He lives, He lives, salvation to impart! You ask me how I know He lives? He lives within my heart.

Rejoice, rejoice O Christian, lift up your voice and sing eternal hallelujahs to Jesus Christ the King! The Hope of all who seek Him, the Help of all who find, none other is so loving so good and kind.

I am privileged to be chosen by our great God to walk this very path that He has lovingly filtered through His hands. He doesn’t call the equipped, He equips those He has called. Amen.

May 30, 2015 / toriscancerjourney

It’s been awhile…. 05/30/2015

So, passwords are supposed to help keep your private stuff private. Then there’s that time you “know” you entered the correct password, several times, but it doesn’t work. ¬†So you click the reset password, ¬†fill in the blanks, click send email. Email is then to give you a new temp password so you can set up a new one. Instead, you end up in a vicious cycle resetting your password that never ever resets. That was me, almost two years ago. For close to six months I tried to get in to my own blog and couldn’t. It was laughable, but I figured y’all could use a break anyway. Today I persisted until I was able to login…it was important!

I’ve had clear scans for this time frame, with comments of “unremarkable” and “stable”. I’ve had heart scans every 3 months, CT scans every 3 months, with the possibility of the scans even father apart as nothing new had surfaced and I’ve been¬†feeling well. The infusions of the two antibodies have also continued every three weeks as well. I was even able to join a class at the¬†YMCA and begin an exercise regimen.

During one of my classes I had performed an exercise wrong and felt like I pulled a muscle. Several weeks went by and there were several days where the pain was so sharp, I could scarcely breathe.¬†I located a chiropractor who took x-rays and he could see where my spine was tilted and had pushed out my rib. I’ve had an adjustment several times in the last two weeks.

The pain persisted over these past weeks, growing worse and sharper as the day wore on, though early in the day I felt physically well. There had also been questions from our medical insurance company regarding some of my appointments, so I also made an appointment with a spinal physiatrist. I saw this doctor and she requested an MRI as she was looking at my CT scan from February which didn’t give her the detail to observe the area well.

I had the MRI scan Friday morning and received a phone call from the doctor Friday afternoon. It appears I have a tumor growing in the epidural canal that is putting pressure on my spinal cord at T7. (When I had the reoccurrence of cancer on my spine in 2013 the locations were T1, T7 and L5). The good news is the spinal cord is NOT involved so an orthopedic surgeon is needed, rather than a neurosurgeon.

The oncologist has not weighed in on this situation as of yet so I don’t yet have a specific game plan.

This is where you come in….

Praying friends, you’ve lifted me up in the past and God answered in a mighty way. I’m not sure what lies ahead, but I know Who holds my future. Please join me in praying for a miracle that the tumor is benign and that I would be a witness and a testimony for His honor and glory regardless of the path ahead.

I will say of the Lord, He is my refuge and my fortress: my God, in Him will I trust.     Psalm 91:2

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:¬†¬† 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 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¬† ūüôā


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. ‚̧

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 ūüôā¬† ). 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! ūüôā¬† 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. ūüôā


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 РI 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.