TEN years in stage 4 metastatic breast cancer!

10 years ago today, I was diagnosed with breast cancer.

WOW… that statement ALONE is noteworthy… TEN YEARS! But even more noteworthy is that initially I was told “we caught it early” and that I was in stage 2. Later, after several scans and tests, I was told I was in stage 4 and the cancer had metasticized to several areas of my body – although, thankfully, not to any organs – and was given months to maybe a few years to live depending upon whether I had chemotherapy and radiation or not.

The American Cancer Society (ACS) states that the five-year survival rate after diagnosis for stage 4 breast cancer patients is 22 percent. This percentage is considerably lower than at earlier stages. At stage 3, the five-year relative survival rate is 72 percent. At stage 2, it’s over 90 percent.
According to a site I saw on the internet, “There is a small subcategory of people with Stage IV breast cancer (about 2%) who beat the odds and live for years. However, it is difficult to predict who will fall into this group.”

WOW…. TEN YEARS in STAGE FOUR metastatic breast cancer!!! I guess you can consider me a walking, talking MIRACLE!!

For those that might be going through what I have gone through, or have a friend or family member who is going through it… I would like to relay some ideas as to why I feel that I have fallen into that “2%” of diagnosed survivors.

1. The grace of God.
2. Powerful prayers.
3. Great doctors with innovative, up to date treatments
4. Wonderful, loving, supportive family and friends
5. Positive attitude and supreme will to live

1. The grace of God.
First, let me say, I have no “illusions of grandeur” that I am any more special to God than anyone else. Quite the opposite. I certainly do NOT feel deserving of His grace! I see others who have passed on from and are still surviving with breast cancer that were/are, in my opinion, MUCH more deserving of God’s grace than I will ever be. That being said, I truly feel that it is only by the grace of God that I am here typing this today! Almost every night, when I go to bed, I thank God for His grace and for giving me even just one more day to be with my family.
When I was first diagnosed, I was 48 years old. I had been married to my wonderful husband, Tom, for almost 20 years. Our children, Tommy, Stephen and Marianne were 19, 16 and 13 years old respectively. My husband told me I HAD to fight this, that I was the “glue” that held our family together. While I truly love God, and want to be in heaven with him some day, I could not stand the idea of leaving my husband and children! I honestly do not know how anyone could survive this dreadful disease (or any other for that matter) without having some sort of faith in a higher power. I suspect there may be some out there somewhere… but I know that I, personally, would never have survived this long without my faith and belief in God and His grace.

2. Powerful prayers.
I realize this ties in with #1 – grace of God – but I believe in prayer so much, that I feel it needs to be separated and highlighted. I was raised by a very spiritual Mom and Dad and I thank God that they raised me to believe in the power of prayer. From a headache to a fever to breast cancer… God answers prayers! I had friends, family and people all over the US and internationally that said they were praying for me. How could God possibly not hear all those prayers and respond?

3. Great doctors with innovative, up to date treatments
I was lucky enough to be led to go to Cancer Treatment Centers of America in Zion, IL where they deal with MANY victims of latter stages of breast cancer. The local oncologist here could count on one hand how many patients she had treated that were in stage 4 of breast cancer. Three of them did not live very long. The other two had not yet made it to 5 years. It only makes sense that, if you can, you go to a place that has a high success rate in treating people in the latter stages of any disease.
One of the many things I like about CTCA is that they incorporate natural supplements into your protocol. Supplements the doctors here at home scoff at, but that TRULY help! I totally believe that God, in his grace, led me to CTCA because of their innovative approach to treatment of cancer. I actually take more supplements than I do prescription medication. And, believe me when I say, I take a lot of prescription meds.

4. Wonderful, loving, supportive family and friends
I know that my husband of 20 years (at that time) and our children were probably scared half to death at the thought of losing me. But they are all so STRONG and supportive of me and my battle with breast cancer! Yes, they broke down and cried – just like I did.. but they were so strong and helpful. When I could not even lift a suitcase to go out of town to CTCA, someone was always there with me to help me. Our daughter, Marianne, probably went with me the most times while I was undergoing chemo and for the first few years.

5. Positive attitude and supreme will to live
I have been told by many people, including doctors, that my positive attitude and sense of humor has played a major role in my survival. From as far back as I can remember, I have always been a jovial person, full of humor, joy and love. I was determined (and still am) that I was NOT going to let having breast cancer take me down.
I have to admit, there are some days that the pain from the tumor that metastisized into my L4/L5 region of my spine is so debilitating I have feelings of wishing I could be out of pain and in heaven. I have a nice little pity party for myself on those days. But in the depths of my painful despair, I think of my family, and I MAKE myself change my attitude. I’m not saying it is easy… its not. I realized very early in my life that it does no good to whine and cry about something bad that has happened to me. My attitude is… it happened… there is no changing what happened, no going back in time and doing things differently….. so pull yourself up by your bootstraps and move on. You can either cry your eyes out about it and be down and dark and make everyone you love around you depressed, or you can laugh, learn and live with it.

I know that I don’t make posts on this blog like I really should, but I can only hope that what I have shared here will help SOMEONE in their journey!

September 15th 2015 Check Up

Those of you that follow my blog may remember that I go to Cancer Treatment Centers of America in Zion, IL every 6 months for scans, blood work and to see all the members of my care team.  Additionally, every 6 months, I see my local oncologist for blood work.  This way, I am being tested every 3 months to make sure my tumor marker counts and other blood work is within normal range.

We left to head up to Zion on our 28th wedding anniversary – Sept 12th.  We decided to wait until we got back home to “officially” celebrate our anniversary with family because we had to leave in the morning in order to get to Coralville, Iowa which is our halfway point on our journey.

It is kind of weird…. but after all these years of traveling up to CTCA, we have this regular routine we follow and almost feel like if we deviate from the routine it will JINX things!  lol  So, like two rats in a maze, we make our trip, always nervous, but also always very hopeful that the scans will turn out fine.

My care team consists of my Oncologist, my Naturopathic MD, my nurse, my care manager and my nutritionist.   My scans came out fine, with the exceptions of a mild uptake in my left jaw that is probably periodontal disease – will be checking with my dentist on that one.

My Oncologist, Dr. Neelam, is so wonderful – I just have this sense of love and loyalty to her because she is so instrumental in the fact that I, being in stage 4 metastatic breast cancer, am a SURVIVOR.  She is so caring and supportive – and reassuring.  My husband and I will most likely be retiring to Montana in a few years, and I expressed to her how concerned I am because I know insurance wise I am grandfathered in to come see her because of the rules they had 8 years ago.  I told her, as tears ran down my face, that I can’t stand the thought of not being able to come for scans and checkups every 6 months.  She told me that I need to stop worrying about it – that everything would work out – and there was no reason to even be thinking about this when retirement is a few years away.  (she apparently doesn’t know what a “planner of goals” that I am!  lol)  After she examined me, and helped me up to a sitting position, she put her hand on my shoulder and said that she truly believes that one of the main reasons I am still here today is because of my positive attitude.  She said I need to hang onto that and keep being that way and stop worrying about things.  It is definitely easier said than done…. but I will do my best!!!

babette-091515-450I was so VERY thrilled to run into Babette this time!  When I first started going to CTCA, she was at the front desk at the Doctors office.  Then she moved to a different position, which I was able to track her down and say hi to… THEN she moved to another position – and I have never been able to get to see her, even though I knew where her office was.  One time I remembered leaving her a note.

Well… this time there she was!  We hugged, exchanged all our normal pleasantries on how we all are doing, showed her pictures of my 2 grand babies AND I got to take a picture with her!  I have not seen her since my Five year Celebrate Life party – which was 3 years ago!

I am always grateful to be able to have a Naturopathic MD on my team!  Khara takes such good care of me and helps me with finding supplements that will help me with certain things that “ail” me.  This time, she was able to help me with supplements that would offset the side effects of all the morphine that the local pain management doctor has me on.  She is such an INTEGRAL part of my care and I don’t know what I would do without having her to consult with!

Well – that’s about it for this visit!  All checked out fine and I am ready to get scheduled to come back to see my care team in March 2016!

Thanks to all of you who remember me and my family in your prayers!

Looking Backwards and Forward

Looking Backwards into 2014
One of the most precious, special moments in 2014 was watching our daughter, Marianne, give birth to a little baby boy – Samuel James Boyd, Jr on April 21st!  As with the birth of Addy, Marianne invited me to be in the birthing room with her and Sam while she gave birth.  It was such a special thing for me that she would want me there!

Samuel James Jr
Samuel James Boyd, Jr.
baby samuel
Daddy, Mommy and Samuel Jr

 

 

 

 

 

 

 

Daddy, Addy and Sam Jr
Daddy, Addy and Sam Jr
Me looking on as Tom holds baby
Me looking on as Tom holds baby

 

 

 

 

 

 

 

 

Our little Addyson Joy who was a few months shy of 3 years old was (and still is) mesmerized by her new baby brother!  She is so good with him, and I hope she continues to be that way when he gets mobile and starts trying to play with “her” toys!  LOL

As many of youGrand Canyon know, I go to Cancer Treatment Centers of America in Zion, IL for my care, and also see a local Oncologist.  In June of this year I received an email from Cancer Fighters Thrive (a part of CTCA) announcing a new website and asking everyone to send in an inspirational travel adventure story which may be included on the new website.  Now… consider that I am statistically supposed to have been pushing up daisies years ago … so an opportunity like this was something I could not pass up!  LOL  So, I sent in my story about traveling with our sons in 2013 – complete with pictures, and it was ACCEPTED!!

My FAVORITE part about my story being published was the very last part that said  “No case is typical. You should not expect to experience these results.

Here is a link to the article if you want to look at it.

In September, 2014, my husband, Tom, and I celebrated 27 years of marriage.  I cannot ever express how grateful I am that God brought us together!

Two of my saddest moments this year was the loss of a friend, Katie Skully Trammell, to breast cancer.  While I never met her, she found me on the internet as a breast cancer victim and we made friends.  She sent me an angel – which made me start collecting them.  She fought a good fight and was so young with young children.   Later in the year I lost my cousin, Janie Ralls to breast cancer as well.  I remember as a child us going to Oklahoma to visit them – many many precious memories!  I also had gone down to see her after she had her mastectomy to try to encourage her because she was so upset.  Both of these deaths broke my heart!

One thing that meant a lot to me was a high school friend messaging me on Facebook and saying   “Kiddo your attitude is amazing and an inspiration! Based on what I see from you on here and the all too brief time we saw each other this summer I don’t think you know what a special person you are.”

The reason that means so much to me is that I try SO HARD to keep a positive, joyful attitude.  But some days, the pain from the tumor in my back, bulging discs, etc. make it a real chore to maintain that.  I have my pity parties, then try to get my emotions and mind back on track.  Honestly, some days I am completely exhausted at the end of the day, just from trying to keep a good mental attitude.  That may sound crazy to some, but for those of you who go through chronic pain, or have a “death sentence” hanging over your head may know what I mean.

Looking Forward into 2015
I am so excited to, come June 15, be able to yell from the rooftops that I was diagnosed EIGHT YEARS ago with stage four metastatic breast cancer and I am still here to tell YOU that YOU can get the same results!!

I am looking forward to seeing my Grandson crawl and take his first steps and then start RUNNING!  I am looking forward to seeing my Granddaughter riding her bicycle and scooter.  I am looking forward to celebrating 28 years of marriage with the man who stole my heart in Utah so many years ago!  I am looking forward to another year of visits to CTCA with good scan results!  I am looking forward to meeting up with friends and going out to lunch, meeting NEW friends and hopefully being of some encouragement to those going through their own breast cancer journey, I am looking forward to spending time with all of my family and so much more!

Here is hoping that whomever is reading this will have the greatest year yet, filled with love, joy, compassion and most of all HOPE!!

September 17, 2014 Checkup

I don’t have a clue why I get so stressed out a week or two before my next visit to Cancer Treatment Centers of America in Zion, IL.  I mean, I pray every night and thank the Lord for taking such good care of me and for giving me another day to be with my family.  I feel sort of sacrilegious for always thanking God for helping me beat all the odds and statistics, but then be so stressed before the visit.  What is up with that anyway?

My husband and I took our usual car trip to the hospital, staying overnight in Coral City, IA before heading out to Waukegan, IL where we stay.  The trip is nice because we get a chance to talk about everything under the sun and share our feelings and dreams with each other.  That will never get old!

I had my PET scan on Monday the 16th and saw the oncologist and the rest of my care team on the 17th.  Normally it is just a matter of going in, getting the great news that all is ok, hugging everyone goodbye and leaving.  But this time it was a little different.  The PET scan showed an area in my “rump” for lack of a more politically correct word that there could be a problem with.  So as soon as the doctor saw that, they scheduled me for an MRI.  What they found was NOT cancer, but a “complete avulsion of the conjoined tendon from ischial tuberosity and mild partial thickness tearing of the gluteus minimus and gluteus maximus at the greater trochanter”

Guess the bottom line is this…. cancer is being controlled well, but the rest of my body is falling apart!  LOL

Grateful that we could leave with smiles on our faces!

Seven Years In Stage 4 Breast Cancer

judyandtom-smThis time of the year is pretty emotional for me for a few different reasons. First, and most  important, on September 12, 1987 I married the love of my life, Thomas Gunderson, who has stood beside be through thick and thin. Secondly, it was in September of 2007 that I first went to Cancer Treatment Centers of America in Illinois for diagnosis and treatment of stage 4 metastatic breast cancer. I was there meeting with doctors and having scans and chemo during the week of our 20th wedding anniversary, which should have been a day together filled will love and celebration instead of one of dread and hopelessness.

Looking back seven years later, I am so glad I went “out of my comfort zone” and flew out to CTCA for treatment instead of having treatment here locally! I truly believe that God led me there and that I would not be alive today had I not gone there. When I say that to people, they want to know why I feel that way. There are a few reasons I can think of off the top of my head, and these are not the only reasons.
1. The doctor here told me I had about 6 months to live without treatment and possibly 2-3 years with recurring treatment. My doctor at CTCA told me that while statistically that was true, they are at the cutting edge of technology and treatment and would do everything they could to help me not be one of those statistics.
2. The doctor locally could count on one hand how many stage 4 breast cancer patients she had treated. Three of them had passed prior to 5 years. CTCA has a much better success rate and more experience.
3. The local doctors scoff at homeopathic, natural treatment. The doctors at CTCA ENCOURAGE this treatment and I have my own dedicated Naturopathic MD as part of my care team! There are so many herbs and vitamins that can help with cancer, and I believe every Oncologist should learn about them and use as part of their treatment plan! I go every six months to CTCA for scans and consult now, and every six months to my local oncologist – so I am being seen and having blood workup every 3 months. My local Oncologist keeps telling me that there is nothing CTCA can do for me that they cannot do here locally. The last time he said that, I asked him if he had a Naturopathic MD on staff now that would be able to prescribe natural treatments. His response, with a disgusted look on his face, was no. I then told him that showed me that they COULDN’T do everything here locally that CTCA does for me!

judy-survivorSo, as I get myself prepared emotionally for this next visit on September 15th, I get a lump in my throat because I am so grateful for the grace of God and all He has done for me and my family! Who would have ever thought that I would still be here driving everyone nuts this late in the game? I know I surprise the doctors – because I have had a few tell me that I should not be alive considering how “far gone” I was when I was first diagnosed.

While I cannot more highly recommend CTCA for treatment for those with cancer, I did not intend for this post to be a free advertisement! LOL  I just want anyone reading this to know that there IS HOPE after a cancer diagnosis and to never, ever give up!

headshave082814

So Much To Be Thankful For

When I look back at my life 6 years ago, I was undergoing chemotherapy and praying like you would not believe that I would survive this horrible death sentence of stage 4 breast cancer.  While I think, because of the treatment I received at CTCA, I did not have as many problems as most people would have undergoing chemo, I still remember at one point thinking I was not going to make it because I was so weak and ill.

Then and now I tried my best to have a good outlook on things – not just including having breast cancer – but in everything in our lives.  My wacky sense of humor saw me and my family through a lot!  Some days it felt like I was completely exhausted at the end of the day, just by trying to maintain a good attitude.  But, by golly gee whiz, I was and am determined to keep my “not going to give up” attitude for as long as I possibly can!

Because of the cancer eating into my L4 lower back bone, I have been in chronic pain for years – even before my diagnosis in 2007.  For those of you that have chronic pain, you know how it can bring you down emotionally, spiritually as well as physically.  The morphine takes the pain down to a bearable level, but it is never gone.

Or… maybe I should say it WAS never gone!!

In December 2012, I started having spasms in my buttocks and told my local Oncologist about it.  They did a scan and found the tumor in my L4 had decided it wanted to grow and be active… so I underwent Tomotherapy which successfully brought the tumor growth back under control.

Shortly after that, I started having spasms, down my buttocks all the way down to the ankles of each leg.  When I say “spasms” I don’t mean little jerks here and there.  I mean massive spasms!  I took a video of some of them and you could see my calf just indenting and jumping and doing all kinds of weird stuff!!  They eventually got worse and worse… at times I could not walk because one or both of my legs would “lock up” as I was walking.  Very scary stuff!  I had to start walking with a cane, which did not make me very happy, but the doctor insisted.  So… being the bull headed person I am, I would just put the can on the crook of my elbow as I walked, so it would be there if I needed it.

On October 8th, I got steroid injections in both sides of my spine and since that day have only had muscle pain in my back!  WOW!!!  Talk about something to be THANKFUL for!!  In less than three weeks I had weaned myself completely off of the morphine and am now living “narcotic free” as well as pain free!

October 29th 2013, I met with Dr. Neelam at the Zion, IL Cancer Treatment Centers of America to go over the PET scan from the 28th and my blood workup.  My husband and I were thrilled to here her say how happy she is with my progress and that my scans all came out normal!

So, I am thankful for God giving me the opportunity to still be around for my family, to see my first grandchild and another coming in April, to be able to walk in a store and shop without having to find places to sit down every 10 minutes or so, for being out of chronic pain, for my doctors, for my friends and for my family.  I am sure once I post this I will think of another 100 things I am thankful for as well!!

Judy

 

 

Part One of My Breast Cancer Journey

Because this is a new blog, and will now be my preferred method of getting information out to those needing it, I am going to give a recap of what I call Judy’s Journey!  All of this info (and even MORE!) can be found in the forum.  The forum will remain, but has been locked for several years because of spammers attacking it.

Here we go!

June 13, 2007 – x-ray of lower back and mammogram because I had a lump on left breast that showed up two weeks prior, and also had been having severe back pain for a year or so.

June 15, 2007 – diagnosed with breast cancer by Internal MD, who said it appeared to be in stage 2.

July 3, 2007 – underwent surgery to have mastectomy of right breast.  Surgeon could not find mass, so he sewed me up and scheduled me for a mammotome

July 20, 2007 – Mammotome biopsy

July 30, 2007 – modified radical mastectomy of right breast.  Removal of 24 lymph nodes, 14 with cancer in them

August 10, 2007 – saw local breast cancer oncologist who said it looked like I was in stage 3 and ordered a port to be put in, a MUGA scan, a bone scan and a CT scan.  She also scheduled me for chemo to begin on 8/28/2007.  Aggressive treatment with four cycles of Adriamycin and Cytoxan, followed with 4 cycles of Taxol on dose-dense regimen every 2 weeks.

August 14, 2007 – had CT scan

August 16, 2007 – bone scan

August 27, 2007 – CT and PET Scans

August 30, 2007 – drains removed from right breast from mastectomy

August 31, 2007 – local breast cancer oncologist went over scans with me and husband Tom.  She said I was in stage IV of metastatic, ER Positive invasive ductal carcinoma of the right breast.  She said it was not curable and the median life expectancy was 2-3 years.  Bone scan showed cancer in L4, left 6th & 7th ribs and right femur.  Also showed “at least 4 adjacent hypermetabolic lesions in the left middle to lower abdomen” within the omentum.  Scheduled in one week to start chemo – Adriamycin and Cytoxan every 3 weeks.

September 2, 2007 – My dear friend Marilyn, called and told me to check into Cancer Treatment Centers of America.  I called, liked what I heard and set up an appointment immediately.  Now… watch how FAST things go from this point forward in comparison to up until this time!!

September 10, 2007 – Meet with Dr. Neelam at Cancer Treatment Centers of America in Zion, Illinois (CTCA) with my sister, Patti

September 13, 2007 – MRI of lumbar spine ordered by CTCA

September 14, 2007 – First cycle of Taxotere – also put on Tamoxifen – CTCA

September 25 – October 11, 2007 – 13 treatments of radiation locally

October 12, 2007 – Second cycle of Taxotere at CTCA with my husband, Tom

November 9, 2007 – Third cycle of Taxotere at CTCA with our daughter, Marianne

November 30, 2007 – Fourth cycle of Taxotere at CTCA with our son, Tommy

December 11, 2007 – Met with therapist for lymphadema – fitted for specialty german made sleeve

December 21, 2007 – Fifth cycle of Taxotere at CTCA with our son, Stephen.  Dr. Neelam said chemo was working and no cancerous activity seen!!

Age 50 for First Mammogram

I find it interesting and concerning that the recommended age for first mammogram is now 50 as opposed to the 35 it was when I was 35.

At age 48, I did not even know I had breast cancer when I was diagnosed, so to say we were surprised would be an understatement.

The tumor, while pretty large, was deep inside the breast and not palpable.  Lucky for me, (thank you Lord!) I got a purple lump on my LEFT side that would not go away, and during a regular checkup with my internal medicine doctor, I brought it up, along with increasing pain in my lower back which was hampering me when performing even the simplest of household chores like dishes and laundry.  She ordered an xray of my back and a mammogram.  It was later found that I had a large tumor on the RIGHT side and a metastatic tumor in my lower back – as well as in many other places.

Even though there was no history of breast cancer in my family, I followed the guidelines at that time to have a mammogram at age 35.  Once it was over, I swore I would never ever have another one because it was so painful!  I found out many years later that the reason it was so painful was because the place I had it done at did not have a clue how to do one any other way.  Had I gone to a “specialist” for mammography, it would have been less of an ordeal.

Had I followed up and had mammograms regularly after that first one…. who knows…. maybe the cancer would have been caught before it metasticized!!

So, based on MY personal experience, I say waiting until age 50 for your first mammogram is NOT a good idea!  Had I “waited” until age 50… chances are I would never have MADE it to age 50!!  I would have been long gone and pushing up daisies by then.

2011-breast-cancer-cases

Look at the above chart from cancer.org regarding incidents of breast cancer in the under 50 age groups and tell me you don’t agree!!

To your health,
Judy Gunderson

Celebrating 6 years!

After six years of “knowingly” living with Stage 4 Metastatic breast cancer, I finally realized that I am not going to die as quickly as the doctors told me I would (2-3 years), so I decided to be brave and start blogging about my experiences!

The first several posts I will be making will be going back in time to June of 2007 when I was first diagnosed.  I hope that this will not bore the heck out of my friends and family that are already aware of my saga!