Scan Came and Went Without Fanfare… For the Most-Part…

I guess it is a good sign when an interval scan has come and gone without scan-ziety or fanfare.  Last week I had a CT scan of my chest. The results showed no signs of cancer, so this marks that I am officially 4 years No Evidence of Disease - We love NED!!!  I was impressed that I was not nervous this time. I was confident that this scan would not show cancer.  I have come a long way, and I am eternally grateful for this level of confidence in my health!  

Unfortunately, my scan results were not 100% good. You may recall that the last several scans have showed some areas of  inflammation in my lungs that have been thus far unexplained. This most recent scan showed that one such area of inflammation had resolved only for two more inflammatory spots to have developed in another area of the lung. In an effort to learn what may be causing this issue, I mentioned to my oncologist that I sometimes choke on liquids and explained that I was concerned that I may not have the best of swallow reflex (a lingering side effect from chemotherapy). My oncologist ordered a swallow study that revealed that sometimes when I drink liquids, a little bit of the liquid goes down the wrong way (into my airway instead of into my stomach). Normally this makes someone cough to protect them from aspirating liquid (or food) into their lungs.  I did not cough putting me at risk for introducing infectious material into my lungs. The technician felt that I had reduced sensation in my throat and airway causing repeated mini-aspirations into my lungs.  This could explain the inflammatory changes seen on my previous several scans. I will take this diagnostic information to a pulmonologist to discuss if there is anyway to prevent further insults to my lungs. At a minimum it is helpful to know the probable cause of these previously unexplained finding on my lung scans.

Big News in Colorectal Cancer Screening

In case you missed it, the American Cancer Society(ACS) has lowed the recommended screening age to 45, due to the trending down of age of CRC diagnosis and increase in overall cases or CRC. Read about it here:  http://time.com/5295525/colorectal-cancer-screenings/ .

For the 3rd year in a row, I am sponsoring an ACS Relay for Life team. The “Love Your Butt” team will walk for in the 24 hour event July 14-15 in Campbell. Now more than ever ACS’s needs our help to prevent all forms of cancer!!!

Please help me meet my fundraising goals with any size donation:

Click here to visit my PERSONAL page.

If the text above does not appear as a clickable link, you can visit the web address:
http://main.acsevents.org/site/TR?px=36418653&pg=personal&fr_id=85546&s_locale=en_US&et=SphoPtmgfo9Wa7PHT7pqKQ&s_tafId=2059458

Your support is greatly appreciated!

How is the Plant Based Diet Going? 

Since January Craig and I have been eating a whole food plant based diet (essentially vegan with an emphasis on unprocessed or minimally processed foods).  So far so good!  We are both feeling great and enjoying the food. We are still working on the logistics for eating out, but if we occasionally eat fish or other healthy meets once in a while - that is okay. We are doing this for overall health, not for moral reasons.  Craig has lost 16 pounds (the brat!), and I have lost only 3. My back injury has hampered my workout efforts, so I think once my ability to move is back to baseline, the weight will come off.  My back is getting better, but testing my patience.  I am confident that I will be back to playing tennis in the coming months!

Life Update:

The elusive home remodel is finally looking like a reality.  We should be starting demo later in June. We will build a new kitchen, replace the single paned windows and floors in the front of the house, redo the deck, add AC, move the front door, and replace the roof. The project will take 6-8 months, so I may be asking to borrow your kitchen from time to time 😉.  

Kayla graduates from UW next week and is looking forward to   explore Europe in celebration. Woohoo!!!  In July, Elyse moves to Chicago for a 4 year adventure at Northwestern’s Feinberg School of Medicine. Jenna is enjoying a summer at home and soon begins work at ID Tech camp before returning to LMU in the fall.  Craig and I are very proud of our girls!!!

Cheers To Life!

Jacki

Jacki’s Much Overdue Blog Post - Last Scan Results & Much More...

I am so sorry to have been such an inconsistent blogger this past year!  Almost 5 years ago, on May 1, 2013, I was diagnosed with Stage III Colon Cancer(CRC) which later became Stage IV with lung metastasis. I am well aware that this story could have ended differently.  I am so very grateful to be alive to tell the tale!  I continue to blog to be an ambassador for CRC prevention, to share my story in an effort to inspire those fighting the fight, to update friend and family, and to share how my focus on healthy living continues to evolve. Lastly, If I can motivate just one person each year in my community to get a colonoscopy and prevent one case of Colon Cancer, I have done my job!

Tahoe with Dales in December

In my last blog post from July 2017 I left you with a bit of a cliffhanger…  I had inflammation changes in my lung scan from June 2017 that could potential be a recurrence.  I posted in August 2017 on Facebook the happy news that the lung inflammation had partially resolved and was felt to be non-cancerous (Yay!), but I failed to share this update in this blog. So sorry!  This last year has brought me & my family much joy & lots of changes.  So, here goes with a much overdue update and a belated kick-off for March Colon Cancer Awareness month.

Health Update and Latest Scan Results...

Two weeks ago I had another routine chest CT scan.  The fabulous news from this scan is that there is still no evidence of cancer! 👍  The big picture is fabulous!  No cancer! 😊  However, this scan was not all clear and positive. I again have some inflammatory areas in my lungs that elude explanation. My radiation oncologist is not overly concerned about these findings, as they are not suggestive of a disease process at this point. These changes could be explained by something as simple as a cold or seasonal allergies, but I again had neither at the time of the scan. So, again we will not wait for the usual 6 months routine scan interval, but will repeat a lung scan in May to verify if these changes resolve or progress. Since this is a repeat of old findings, I will not waste time worrying about it, but continue to enjoy my life & celebrate my now 3 years 9 months N.E.D!!!  Woo Hoo!!!

Other Health Stuff: 

Meet Play Love tennis tournament in
Tucson, AZ  November, 2017

As many of you know, one of my biggest joys in life is playing tennis. The social aspects, physical & mental challenge of the game, and the outdoor setting are a big part of my love for this game. Unfortunately, my body is angry at me for playing too much tennis without enough cross training. This is especially important at my age (I forget that I am 54 - NOT 20!). I know I have degenerative disc disease (not uncommon for my age). Three years ago I had right sided sciatic pain that I was able to resolve with conservative measures (physical therapy & acupuncture). This time I have more significant left sided sciatic nerve pain radiating through my hip, glute & hamstring area, and down into my calf. So, I have sadly had to stop playing tennis and hiking up hills to rest the nerve. This week I had an epidural steroid injection into the area of 2 bulging discs at L5&S1, to reduce the inflammation and pain at the source.  I will soon resume cross training with Pilates, PT, & yoga to build the supporting muscles in my core & back, so I can ease my way back into playing tennis and hiking with Cooper!

Exploring Dietary Changes & Listening to My Body:

For years, I have focused on a diet high in fruit and vegetables with a daily goal of eating 10+ servings of veggies and fruit per day (8+ veggies & 1-2 fruit). I was often asked if I had ever considered a vegetarian diet. I had thought about it, but had continued to eat meat, despite having reading a lot of research about meat and animal products causing inflammation in the body.  I appreciate that all bodies are different, and believe that a customized diet is the way to go for each individual. Over the years I have become better at “listening” to how my body responds to food. Body responses and allergy test results have told me that gluten and dairy are not so good for me.  In the past I have chosen to selectively ignore some food intolerances because i love meat, cheese, bread, meat, etc.  Recently, the empty nest situation has opened the door for some new thinking.


My husband, Craig, has recently been reading about the benefits of a Whole Food Plant Based (WFPB) diet.  After a lifetime of eating meat, Craig and I have decided to explore how our bodies feel when eating a WFPB or vegan diet.  We may have fish or other small portions of healthy meat once in a while, but for the most part we have been eating plant based (& gluten free for me) for about a month. I am happy to say that we both feel really great!  This is a learning process, so stay tuned and feel free to ask us how it's going!

What is your body telling you about the food you eat?  

• I thought this article was helpful when exploring the transition to a plant based diet: Tips for Shifting to a Plant Based Diet for Meat Lovers
• This article summarizes 5 important CRC prevention tips that support the food topics above and introduces the awareness section below - please read!  Colorectal Cancer Awareness Month: 5 Prevention Tips

March is Colon cancer Awareness Month:

CRC is the 2nd leading cause of cancer death, and is preventable! 

Colonoscopy saves lives!!!  

• Have you recently turned 50? 
• Have you had a colonoscopy?
• Is it time for a repeat colonoscopy? 
• Do you have a family history of colon cancer or are you at higher risk for CRC? 
• There are many types of screening options, & they all start with you talking to your doctor!

Please take that 1st step! Talk with your doctor!  It could save your life - It saved mine!

Family Update: 

Australian Open 2018

• Craig & I are officially empty nesters since August 2017. We are adjusting well.  We have been traveling a bit more: I went on a fun ladies tennis tournament in Tucson, AZ in November; we spent part of December in Tahoe with close friends, Janet & Foster Dale; and started the new year taking a fabulous trip to Melbourne, Australia to explore this fun part of the world and attend the Australian Open Tennis Tournament. This month our plans to remodel the house have begun in earnest. Our 1937 home needs some love! The project includes replacing a leaky roof, remodeling the kitchen, deck, and floors, so this should keep us busy for much of 2018!  

• Jenna is a freshman at Loyola Marymount University studying computer science. Jenna is doing well & will be home this summer to work as a counselor at IDTech Camp (a STEM based summer camp for youth & teens).  Yay, Jenna!

• Kayla is in her final semester at University of Washington studying communications & business. She is set to graduate in June, and has lined up a post graduation job in Seattle at Collabera, an IT Tech staffing company.  Kayla, you go, Girl! Adult life, here you come!!

Sharks Game with Girls :-)

• This year Elyse has been doing research at UCSF while applying to medical schools. She recently travelled to India with her research group & added a fun side trip to Thailand & Cambodia. She has been accepted at 3 med school thus far, so she is IN and going to med school in the fall! Well done, Elyse! 

Craig and I are so very proud of all three girls for working so hard and blossoming into such accomplished women!!!

2018 Relay for Life Kick Off!  

Once again this year, I am honored to captain the Love Your Butt team at Relay for Life with my trusty co-captain and dear friend, Susan Sweedler.  

This year the Saratoga/Los Gatos event will combine with Campbell to form one larger even more fun event & WE NEED YOU!  We would love to grow the team to make a bigger impact on cancer treatment and prevention through the American Cancer Society.

Please join our team &/or donate at the following Link:

http://main.acsevents.org/goto/loveyourbutt

Save the Date!

SATURDAY, JULY 14, 2018 - SUNDAY JULY 15, 2018

10 a.m. - 10 a.m.

We will have a team meeting in coming weeks, so let me know HERE, if you would like to join in the fun while supporting American Cancer Society!

Love and hugs to all!  XOXO

~ Jacki ~

Living with the Unknown.... Again

Living with the Unknown.... Again

As a cancer warrior since May 2013, I have had a lot of experience living with the an uncertain future.  For three years, from May 2014 through May 2017, I have had the pleasure of being No Evidence of Disease (N.E.D.) from colon cancer.  Hence, I have not been posting much.  No news is good news, right?!

What Does NED Really Mean?

NED describes a point in time having no signs or symptoms of cancer nor any evidence of cancer on imaging methods available at this time.  NED may be temporary, or it could be permanent.  NED does not mean that the disease had been cured (a term rarely used by doctors anymore), since recurrence can't entirely be ruled out.  To be classified as NED means there is no evidence of any cancer present that can be detected by studies such as blood tumor markers, CT, MRI, bone or PET scans. It is impossible to know if there are "micrometastases" present in your body - that is, metastases which are too small to be seen on imaging studies.  We know a bit about how cancer spreads, but we don't know exactly why some cancers return years later.  [from: www.verywell.com]

Am I NED or Not?
Scans from May 30th (CT) and June 6th (PET) 2017, both show a small 5mm round change/"spot" in my right lung near the site of my previous cyberknife radiation that was not present in my March 3rd, 2017 scan.  This spot could be caused by inflammation or it could be a tumor indicating a metastatic recurrence. The June 6th PET scan failed to definitely determine if it was a tumor with uptake of the sugar material only a bit above baseline.  This spot is too small to biopsy or treat, so what is the plan....we wait and rescan.  In mid August, I will have another scan to see if the spot has grown.  If it does, it defines itself as a tumor.  If it goes away on it's own, this indicating that it was just an inflammatory process that resolved itself.  So, we wait....

How Am I Managing?
I am often asked, "how are you dealing with this new unknown?"  I have been through a lot of emotions since learning that I may have a recurrence.  Part of me wanted to believe that it is likely inflammation and hope it will just be gone on the next scan.  I am too much of a realist for that.  I always knew that statistically recurrence was a high probability, but felt like I was on such a positive track that, honestly, I believed I would be one of the lucky ones who beat it completely the first time.  As I have not had a cough, bad cold, bronchitis/pneumonia like stuff going on in my chest in recent weeks, I am feeling there is not enough evidence to support that an inflammatory process in my lungs is likely. I feel like there is a good likelihood that this new spot is a tumor, so I am am emotionally and physically preparing myself for the likelihood that I will need go back into battle to kill off this new growth.  If the spot is gone in the next scan I will be pleasantly relieved, but I would rather prepare myself for the worst and be ready.  My doctors did not discuss a treatment plan as the diagnosis is not yet clear; however, I am confident that we can either remove a new tumor with radiation or surgery as we did before.  In the mean time, I am focusing on eating healthy, staying active with hiking and tennis, meditating routinely to stay centered and positive.  Anxiety can creep in all too easily if I let myself think too far ahead. I remind myself routinely to breathe, reflect on the current moment, and enjoy life and all that it brings.  My daily mantra is "Right hear, right now, life is good.... breathe in, breathe out, be grateful, and enjoy every moment."

The Joys of Lingering Post Treatment Side Effects 
I really do not like to focus on the negative, so I have avoided discussing the post chemo, radiation and surgery issues that impact my daily life.  In case you were thinking it must be nice to be a cancer survivor and play tennis & hike every day. I assure you that this last year has brought a new crop of side effects that has kept me rather busy visiting doctors and running to the pharmacy.  I will spare you the exhausting details, but this is a summary of the latest fun times... ;-):

• Dry mouth & eyes with mouth rash - work-up including 5 different specialist (ophthalmologist, ENT, dentist, hematologist, and dermatologist)  & multiple tests that finally resulted in a diagnosis of Oral Lichen Planus due to an Allergy to Gold (presumably triggered by chemotherapy) requiring me to remove 3 gold crowns and 4 gold inlays over the next several months. :-( $$$😩
• A blood clot in my internal jugular vein near my MediPort insertion site. I am required to be on 3-6 months of anticoagulation therapy until the clot resolves, and I recently had my MediPort removed. 
• On a positive note: in May I had a colonoscopy that showed no signs of cancer.  I had 3 small polyps that were removed and all tested for normal cells. They did several biopsies randomly throughout my colon and all revealed normal cells and no signs of inflammation 💩!  Are you due for a colonoscopy? Don't delay, it could save your life!

Relay for Life Saratoga/Los Gatos & the Love Your Butt Team 

My passion to raise awareness and the prevention of Colon Cancer continues stronger than ever.  I support the efforts of American Cancer Society in finding a cure and providing care for those affected by cancer.

I am again participating in Relay for Life Saratoga-Los Gatos at St. Andrew's on July 22-23rd, 2017 10AM-10AM.  This year they have asked me to speak during the Luminaria ceremony.  Please come out anytime during the event and walk with me to show your support.

If you would like to join the team or make a small donation to help Team Love Your Butt meet their fundraising goals, it would be very appreciated:  http://main.acsevents.org/goto/loveyourbutt.  Thank you!!! 💙

Still Following the Latest in Fighting Cancer with Nutrition

• Colon cancer survivors who ate at least two ounces (57 grams) of tree nuts a week - roughly 48 almonds or 36 cashews - were significantly less likely to have their cancer return or to die from their cancer than those who did not eat nuts.  Reference Here
• The benefits of a Mediterranean diet are well known when it comes to colorectal protection, but it’s hard to know specifically what elements of the diet are the healthiest. Now a new study, presented suggests that increasing consumption of fish and fruit and reducing soft drink consumption are the three most important components. Reference Here

Life Has Been Full of Good Things
This Spring has brought some special milestones to the Berlinberg Family.  Jenna survived the college application process, graduated from Kehillah Jewish HS, and is preparing to attend Loyola Marymount University in Los Angeles in the fall.  Kayla finished her Junior year at UW studying Communications and Sales.  She enjoyed completing a sales internship this spring and is looking forward to her senior year!  In June Elyse graduated from UCLA with a BS in Biochemistry and minor in Global Studies.  Elyse is taking a gap year to pursuing medical research while applying to medical schools.  We are so proud of our girls and enjoy watching them grow into smart beautiful young women!

I hope you had a wonderful July 4th! 💥

Could it be? I'm Two Years N.E.D.!!!

First of all, I apologize that it has been 9 months since my last post. Let's just say, no news is good news. Life is good!  

I have continued to have every three months scans, routine blood work, and to date all have been clear. Yesterday I had another CT of my chest, abdomen & pelvis. Today I had an appointment with my wonderful oncologist at the new beautiful Southbay Stanford Oncology building. She told me the fabulous news that I have now reached 2 years No Evidence of Disease!  If this timing doesn't sound right to you, I questioned it too. I had been counting myself N.E.D. after my first clear CT scan which was in early September 2014. Apparently, the doctors considered me N.E.D. at the time that my last tumors were surgically removed and/or killed via cyberknife radiation (in my case, late May 2014). So, here I am, two years cancer free!  Who would have thought it!!! I am so very grateful for the gift of life!  

My next scan will be in 6 months.  I will then get a full body PET scan to look for any areas of cancer cell activity. So cheers to another 6 months of enjoying a life without cancer. 

So, what have I been doing to stay healthy? I play waaaay too much tennis (and loving it!), walk, hike & go to Pilates & yoga. I sadly have let my guard down as to my healthy diet.  I know I still maintain a much better diet than the average American, but I need to reel in the portion sizes, sugar, alcohol, and gluten.  I still eat a ton of organic veggies, but my weight is creeping up.  This is not okay if I want to reduce my recurrence risk! It is time to be more vigilant on the food front!  To kick off this effort, next week I start a 4 week Survivor Nutrition series at Cancer Care Point.


Relay for Life:   Donate To or Join Jacki's Relay for Life Team Here

I am so very grateful for my cancer survival, and I feel it is time for me to give back to the cancer community that so generously supported me during my cancer fight.  

On July 23-24th, I am participating with a few of my friends and family plus co-captaining a team in the Saratoga Relay for Life at St. Andrew's School to raise money for the American Cancer Society.  Relay for Life is the single largest cancer fundraiser nation wide!  

I would really appreciate your support in meeting (better yet, exceeding!) my fund raising goal to raise money to find a cure for cancer in our lifetime.  

Please visit my Relay for Life page to make your donation or to join my team:

Donate To or Join Jacki's Relay for Life Team Here

How's the Family and the Rest of Life?

It is that time of year again when we are so proud to watch our girls grow up, gain independence and spread their wings.  Elyse just completed her Junior year at UCLA.  She continues to be busy with melenoma research and is now working for an orthopedic surgeon in LA as a scribe.  Kayla just completed her Sophomore year at UW and has a great job that she loves with Red Bull.  Jenna has just completed her Junior year in high school and is looking forward to being a Senior in the fall.

Craig and I have been enjoying a bit more travel this year; some business, some pleasure, some together, some independently.  I have included a few pictures from recent months to overview recent life events. 

 

        

Enjoy your summer, Everyone!!!

~ Jacki ~

One Year N.E.D.!!!

I am a bit slow getting this out, but it does not change the level of excitment I have for telling you that I am officially:

ONE YEAR NO EVIDENCE OF DISEASE!!!

My scan on September 14th, 2015 was again clean & made it official!  I scheduled my scan on Rosh Hashanah, the Jewish New Year, as I could not imagine a better way to celebrate and contemplate the coming year than by confirming my disease-free state.  I am eternally grateful for the last year of my disease-free life.  

What a gift! 

Thank you all for your support and love throughout this process.  I could not have done this without you.  ((( BIG HUGS))) to all of you!  

The magic number is two years of clean scans, as 80% of those who recur do so in the first two years after treatment.  I still have a high risk for recurrence, but I'm half way to a much lower risk. The longer I am N.E.D. the risk of recurrence reducing exponentially.  So, I celebrate, appreciate, and keep my on fighting and appreciateing each and every day that I have been given.

I will continue to have every three month scans for another year.  I see the radiation oncologist every time I have a scan, so they can monitor the progress of my cyberknife radiation scar to make sure it continues to shrink/evolve and not grow (indicating possible tumor regrowth).  My next scan will likely be a PET scan to confirm that I do not have any "hot spots" of sugar uptake that indicate potential tumor activity. Until then, I will go to the beautiful new Stanford Cancer Center in Los Gatos monthly for my blood work and Vitamin B12 shots.  I also continue to go to my Integrative doctor about once a month to monitor my diet, supplements, and get acupuncture for my low back and hip pain (getting old sucks!).  

I continue to attend support groups at Cancer Care Point. I am always amazed when I get there how much I need the people there and how much they need me too.  What I mean is that I gain a sense of peace among my fellow cancer patients and survivors that I get no where else. Even if they are new to the group, they are immediately part of the cancer family. A club no one wished to join, but one they are glad to not be alone in. I also notice the comfort and hope that I give to those in active treatment - just by being there and sharing my story.  I am living proof to them that with good medical care, taking extra good care of yourself, and a good dose of luck that they too can beat the odds. I feel it is time for me to "give back" where I can.  I have been invited to speak next month at a local woman's philanthropy organization. This will be the first time I have spoken to a group about my disease, but I am thankful for the opportunity to share how community helped me through the tough times with cancer, how they can support loved ones or themselves with their cancer journey, and finally speak to the gratefullness I have for the continued life that I have been given.

What's New

We are mostly settled into our new home in Monte Sereno.  We have several projects in the works that are keeping us busy.  We are remodeling a lower level guest room, and, as you might expect with a house built in 1937, we are finding lots of other issues.  The electrical in the house seems to need an upgrade, we replace a furnace, repairing some foundation framing, etc…..  We are also getting plans drawn to redo the landscaping to drought resistant plants, put in a hot tub for our aching bones, and add a fire pit to the back yard.  We are excited to see the end result (whenever that will be!).  Despite all the work, we are enjoying the new house with its old charm, great light, and outdoor spaces.  We are discovering several hiking routes that are nice and hilly for that extra challenge!  Come check out the new house and let's go hiking the hills or walk into Los Gatos for a good workout.  :-)

The rest of life is busy, busy, busy.  I won't bore you with too many details, so here is a bullet list of what we have been up to:

Riviera Maya - a lovely oasis to recharge our batteries!

• Elyse returned from a fabulous summer abroad program in Dublin, Ireland where she studied physics.  She is now back at UCLA living in an apartment near the campus and keeping busy with Yell Crew and fall sorority rush activities.  She took the MCAT in mid-September, so her journey of applying to med school has begun.  Classes started last week, so she has officially started her Junior year of college.  Boy, how time flies!!!
• Kayla came home in June to help us move and returned to Seattle to spend the summer working and bonding with her new city. She is working as a hostess at Eureka!, a high end burger bar.  She recently applied to be a Red Bull Rep, which sounds like a fun job, so she's keeping her finders crossed.  Kayla is living in her Sorority house and started her Sophomore year at UW last week. 
• Jenna turned 16 in August, recently started her Junior year of high school, and is doing well.  She is making a few new friends and enjoying life a bit more.  She has started a new hobby of working with and riding horses and has been enjoying new experiences (hiking, cooking, philanthropy projects, etc).  
• Craig had and respite from work related travel over the summer, but is back at it this month. He and I enjoyed a fabulous vacation in the Riviera Maya, Mexico earlier this month, and we are trying hard to retain that relaxed vacation feeling.
• I am captaining another tennis team this fall, and loving my time on the court!  I play tennis, hike with Cooper and friends, and go to pilates or yoga regularly. It keeps me busy and hopefuly healthy and on track.  

L'Shanah Tovah - a sweet New Year to All!

9 Months NED and Life Brings Us Change

So Very Happy to be Healthy :-)!

May 1st mark my 2 year Cancerversary of my diagnosis. It has been a remarkable two year journey, and I am proud to continue to call myself a survivor.  Last week I had another 3 month interval scan of chest, abdomen & pelvis.  I am thrilled to report that all remains clear! I am officially 9 months No Evidence of Disease!!!

Last week was National Cancer Survivors Day. I am proud to be a healthy member of this group, and hope to keep it that way. 

My oncologist has now changed my visits from monthly to every other month. I will continue to have a blood draw to check my CEA (cancer embryonic antigen) monthly, but I welcome the less frequent office visits!  Scans will continue to be every 3 months until I hit the 2 years NED mark. Otherwise, my health & energy is good. My hips no longer hurt and my back is much better after regular acupuncture twice a month. I continue to take Celebrex for my joint pain & for its anti-cancer properties.

Change Is In The Air

Goodbye Horseshoe Drive, Hello Greenwood Lane!

With two girls away at college, one in private school, and an intensive drought in progress Craig & I made the tough decision to sell our now too big home on a large lot with a, once again, leaking pool. We have bought a smaller home on a smaller lot without a pool ;-) just 3 miles away in the Monte Sereno foothills.  On June 20th we will go from a 6BR 4bath 3365 sq. ft. home with a 5 car garage to a 3BR, 2bath 2,400 square foot home plus a 1BR 1bath guest quarters and a carport. So, we have done (& are still doing) some significant sorting, throwing away, selling, and donating. It is hard work, but very liberating! We are excited for the change, but a bit sentimental to leave the beautiful house that our 3 girls grew up in and call home. We have lived in this home for 20 years; Elyse was just 9 months old, and Kayla and Jenna were just a thought. But, life changes and we are embracing it.  We look forward to making our new house our own & creating new memories!

Summer

Craig has been super busy adjusting to his split time in the operating room and traveling with the business development position. He seems to like it, but it has come with a significant learning curve.  In time, I believe it will be a good position for him and help to keep things interesting on the work front.  Elyse is home for a few days and then headed to Ireland to study physics at University College Dublin for 8 weeks.  So, glad she has this opportunity to slip in a study abroad in her busy college schedule.  Kayla is spending the summer in Seattle working, exploring her new city, and hoping to get a summer internship.  We are looking forward to having her home later this week for 10 days.  Jenna doing well and in a summer program away also. Craig and I are empty nesters for a while.  This is strange, but it gives us time to work on our new home. Life has been insanely busy, so I hope to find some relax time, play some tennis, and sit by a pool that we no longer have to maintain ;-).

Wishing all of you a fabulous summer!

Jacki

Status, Consultation, Aging, Lifestyle, Awareness, & Radio Interview

My Latest Cancer Status:
In short - I am still N.E.D. and enjoying life.  I see my oncologist once a month and get my blood work done, and will soon have a PET Scan at the end of March to confirm my status.  I also visit my integrative doctor twice a month for acupuncture and diet monitoring.

I did have an important consultation with Dr. Lin in Seattle in early February that shows a promising maintenance protocol to prevent recurrent colorectal cancer (CRC).  The detailed notes from this consultation are at the end of this post.  I am still waiting for the return of my tumor study results to review the effectiveness of this protocol for my situation.  I will let you know how this turns out.  Thank you to my dear friend, Sue Leiter, for coming with me on this trip to help me take notes and mix cancer business with pleasure ;-)!

My Aging Body:
Since around July of 2014 I have been having progressively worsening pain in both of my hips.  As this showed up around the same time that I began Avastin, I assumed it was a side affect of this or other chemo drugs. Chemo can cause inflammation in various parts of the body, joints included.  In February I finally had an MRI of my hips and my low back, as my symptoms had expanded to include low back pain.  Well, I found out that I am just getting old! ;-(  I have small bilateral labrum tears in my hips (small tears in the hip cartilage) and mild bulging of three discs in my lower back. The treatment? - more physical therapy and a lifelong of stretching and strengthening of my back and abdominal muscles.  Thankfully none of this requires surgery. I also shifted my acupuncture treatments to reduce the swelling and quiet the nerves in by lower back and hip area.  So, far all is helping to reduce the symptoms :-) and keep me on the hiking trails and tennis court which makes me very happy!

Staying on Track with a Healthy Lifestyle:
I continue to work on healthy eating and go to the fabulous weekly cooking classes offered at Cancer Care Point, a local cancer support network. I starting keeping a gratefulness journal, to help remind myself of the positive things I have been blessed with. I am also practicing meditation and the use of essential oils as an adjunct to relaxation and improved health. I was recently shown how to perform self shakra balancing (thank you Jennifer MacDonell), which I have begun to incorporate into my daily routine. This all serves to help keep me in-the-moment and my emotions in check.

March is Colon Cancer Awareness Month!
If you follow me on FaceBook, you no-doubt know that March is colon cancer awareness month. The Love Your Butt campaign is raising awareness of colon cancer and reminds us that we need take care of ourselves and be screened for colon cancer once we are 50yo (or earlier if you have a family history of colon cancer). Colon cancer is the 2nd leading cause of cancer death nation wide, and is the most preventable cancer through routine colonoscopy screening.  Colon cancer is occurring more and more frequently in younger populations, well before screening age.  So, please be aware of the following symptoms of colorectal cancer posted by the American Cancer Society:

Signs and symptoms of colorectal cancerColorectal cancer may cause one or more of the symptoms below. If you have any of the following you should see your doctor:

• A change in bowel habits, such as diarrhea, constipation, or narrowing of the stool, that lasts for more than a few days
• A feeling that you need to have a bowel movement that is not relieved by doing so
• Rectal bleeding
• Blood in the stool which may make it look dark
• Cramping or abdominal (belly) pain
• Weakness and fatigue
• Unintended weight loss

Colorectal cancers can bleed. While sometimes the blood can be seen or cause the stool to become darker, often the stool looks normal. The blood loss can build up over time, though, and lead to low red blood cell counts (anemia). Sometimes the first sign of colorectal cancer is a blood test showing a low red blood cell count. 

Most of these problems are more often caused by conditions other than colorectal cancer, such as infection, hemorrhoids, irritable bowel syndrome, or inflammatory bowel disease. Still, if you have any of these problems, it's important to see your doctor right away so the cause can be found and treated, if needed.

My colon cancer presented at age 49 as anemia, because my tumor was bleeding.  I eventually became weak and fatigued.  The tumor was found on colonoscopy while looking for the cause of my anemia. Sadly, my CRC was not easily detectable until it was fairly far along. Be vigilant, pay attention to your body, and stay on top of your screenings.  It may save your life!

Cancer Beat Radio Interview:
On March 3rd, 2015 I had the honor of being interviewed on The Cancer Beat radio show.  It was fun to chat with the show's host Ingrid Regan, who is a fellow CRC survivor and works to spread the word about all things cancer.  I shared my history, treatments, outcomes, and prevention that I have experienced and practice.  If you are interested in listening to this one hour interview, the archive is available here:

http://thecancerbeat.weebly.com/show-archives.html

I am grateful for all of you who have been with me on this journey 

and continue to fill my life with your love and support.  

Hugs, Jacki

Notes from consultation with Dr. Lin, Oncologist, 
Seattle Cancer Care Alliance in Seattle, WA from 2/3/2015:
He is the doctor who is studying the ADAPT Protocol. This is a long note, but has all that I learned from him during my consult as well as ADAPT research study links to follow. This protocol is being shared with a few other cancer centers across the country, as it has been gaining a lot of attention for it's success. Here is what I learned:
--------------------------------------
Review of my cancer history to date.
Looked at recent CT Scan from December 2014 together. Re-confirmed NED.
Pattern of recurrence for me - three mets to lungs (removed), not liver or other organ lymph nodes.
Current CEA slightly elevated CEA (4-5 range for last 6 months).
Original tumor removed with 15/23 lumpy nodes positive.
Original tumor KRAS Mutant, moderately differentiated adenocarcinoma, and lung mets where solid round tumors.
*Monitoring strategies: suggests continued scan testing every 3 months, however instead of all CT scans make it CT scan q 6 months alternating with PET/CT every 6 months.
Discussion:
- Are tumors/cancer cells really gone? Not likely. Cancer cells lay dormant with micro tumors in the bone marrow and wait for opportunity/environment to grow.
- Without treatment stage IV mCRC have very high chance of recurrence, of those that recur 50% will happen within the first 2 years.
- What is ADAPT Protocol: Celebrex 200mg twice daily (400mg/day & Xeloda 1,000 or 1,500 twice daily for 2 weeks on, one week off, or M-F for 3 weeks and one week off, or some variation there of).
- ADAPT protocol is 3 year commitment. Side effects can be managed with dose modifications; weight gain, hand foot syndrome, inflammation/joint pain, etc.
- How ADAPT is believed to work: Typically chemo does not get to the hibernating cancer stem cells that are hiding in the bone marrow. They are waiting for opportune moment & right environment to release & metastasize. It is believed that Celebrex wakes-up the hibernating stem cells hiding in the bone marrow. Once awake & circulating both the Xeloda & Celebrex kill them.
- Studies show Celebrex alone has some anticancer properties; findings - 25% gained 6 months more survival for stage III colon cancer.
- Celebrex & 5FU work differently; Celebrex kills cancer cells in 15 minutes & 5FU in 17 hours. 5FU stimulates cancer cells (queen bees) & Celebrex kills them quickly & 5FU later. Together Celebrex & 5FU potentiate each other & are more effective.
- Check genomic sensitivity on all patients - test shows effectiveness accuracy of approx. 80%.
- ADAPT works well with solid tumors & KRAS Mutants. I have had both of these, so Dr. Lin feels this may be effective for me.
- * They are looking to add immune therapy to the protocol in the future.
- Question from Dr. Chen: "Are there any surrogacy markers for efficacy?" Dr. Lin, "Yes, however I have no funding for them. They are expensive, but can be ordered."

Findings/Outcome for ADAPT Patients:
150 patients studied after a 3 year use of Celebrex/5FU with 30%(no surgery group) to 40% (with surgery group) patients achieved complete response (full remission) for >5 years.
* If my tumor studies show favorable responses in tumor studies to this treatment protocal the survival numbers could be higher than those in the study.

My Treatment Plan:
1) Blood tests as ordered & drawn at SCCA to predict - included: CEA, CA 9-19, other cancer markers, and routine labs.
2) *Plus study blood draw: "Performance Characteristics of a New Circulating Tumor Cell Assay" = CTC. Normally a $2k test - results to Dr. Lin.
3) Send fresh frozen tumor sample from Stanford lung surgery to FoundationOne (Roche) for testing to predict the effectiveness of ADAPT protocol for me & predict effective meds for potential future mets. Results within 2-4 weeks. *Dr. Lin would like to get this going ASAP.
4) After test results back, if shows I am a good candidate/positive tumor response for Celebrex/Xeloda maintenance then begin ADAPT Protocol if I choose to move forward with the protocol.