Summer Maintenance Mode

I hope you are all enjoying your summer! I can't believe it is July already!  Since my last post I have
been up and down with minor nagging health issues, but glad to say I am in good shape now.

On May 30th, I had a repeat colonoscopy; my first one was a year ago when I was diagnosed with colon cancer. This time I got much better news.  The surgeon said my colonoscopy was "boring"!  He found no suspicious findings & my surgical scar from the tumor resection had healed well.  I got the "all clear";  I don't need another colonoscopy for 3 years. ;-)

On Monday, June 2nd I started back on chemo therapy after a two month break for lung surgery and cyberknife radiation procedures.  Unfortunately, all did not go well.  My daughters had both been sick with a gastrointestinal virus the prior week, so of course my turn to get the virus coincided with my first day back on chemo :-/.  Having not yet recovered from the colonoscopy prep the prior week,  then the insult of chemotherapy, and a GI bug - MY GUT WAS NOT HAPPY!   My gut was not absorbing anything and just ran though.  I quickly became dehydrated, got a urinary tract infection, and was put on antibiotics.  This all made my gut even more unhappy; I ended up getting a liter of IV fluids with electrolytes at the infusion center for four consecutive days.  I felt like hell!  Finally, my gut began to calm down.  It took the following 3 weeks of medications, diet changes, probiotics, and rest to get myself gut back in working order for another round of chemo :-(.  








On July 1st I was finally feeling strong & healthy and ready for another round of chemo.  My "chemo cocktail" to date (since February 2014) includes Fulfuri (Irinotecan, Leucovorin & 5FU).   We had been wanting to add another special "targeted" chemotheraputic drug called Avastin.  Avastin is an anti-angiogenesis or "tumor-starving" drug.  Unlike chemotherapy that attacks the cancer cells, the purpose of Avastin is to block the blood supply that feeds the tumor. This can stop the tumor growing and spreading to other parts of the body.  If you wish to better understand how Avastin works you may want to watch this video:   http://www.avastin.com/patient/overview/about/how/index.html .  We had to wait until I had fully healed from my lung tumor removal surgeries to begin this therapy.  On July 1st I was finally declared fully healed & was able to receive Avastin in addition to my usual cocktail.  I did not experience any noticeable side effects from the Avastin, however we need to monitor my blood pressure for a potential rise (the most common side effect).   Most importantly, Avastin is another step in the right direction towards preventing growth of &/or removing the couple of small "potential tumors" that we are watching in my lungs.  It is a powerful tool to help my body kick cancer in the ass!

Hike with Havurah.

My next scans are scheduled for late August. These scans will monitor the progress of the tumor destruction from the cyberknife radiation treatments & check for any other changes.  So, until then, I am on every two weeks chemo maintenance mode & trying to make the most of the summer :-).  I continue to learn more about anti-cancer diet/foods, keep my stress levels down, and improve my fitness.  I finally am able to begin to add weight and resistance training to my fitness program and hope reduce my BMI.


The rest of my life is otherwise treating me well!  I am getting out regularly with family & friends.  I have been hiking, walking, & playing tennis.  My family has celebrated some spectacular family milestones this summer.  In May/June Kayla had senior prom at PacBell Park in SF & graduated from Saratoga High School; Elyse joined the UCLA Yell Squad & finished her Freshman year at UCLA; and Jenna is serving on the board for her BBYO youth group & completed her first year of high school.  Having cancer certainly gives one a deeper appreciation for life's precious moments.  I so appreciate that Craig, the Girls, and I could enjoy these joyous moments together!

  

The summer weather has been perfect!  I am looking forward to a couple of upcoming trips.  In a couple of weeks the whole family (all five of us!) are headed to the Central Coast to explore Ojai, CA.  Ojai is a  lovely artist community that boasts great hiking, spas, beautiful orchards, food & wine.  In early August I am looking forward to meeting up with my sister for as long weekend in New Orleans, LA.  I have never been there & am so excited to explore this old historic city & it's wonderful food and jazz.  Finally, in mid-August Kayla & I are off for a short trip to Seattle, WA for Kayla's University of Washington orientation.  I will miss her so much, but I am proud and thrilled for her to make this exciting transition!

I hope you are enjoying your summer and had a fabulous July 4th weekend.
Live each day to the fullest!   Jacki

Cyberknife Treatments Complete! ✔️

Last week I completed the cyberknife radiation treatments to the third and final lung tumor scheduled for treatment.  I went to Stanford on four consecutive days to receive the treatments.  Each treatment took about 20 minutes to do the scans that verified the precise positioning needed to deliver the radiation and about one minute to deliver the treatment.

Here is a photo of me on the table just prior to my last treatment. That device above my chest circled around my body - a complete 360 while delivering the radiation to the tumor.

The tumor will be progressively destroyed over the next several months.  I will have scans to check the progress in late August.  I had vertually no side effects, except for being tired from getting up early to fight the traffic on the way to Palo Alto.  If I am to have any side effects, they will likely show up in about 4-6 months.  The most common side effects of cyberknife radiation to the lungs are a cough, indication pneumonitis (inflammation in the lungs), that may require steroids and pain & weakness in a rib if it is near the tumor site. Let's hope neither of these occur to me.

Cheers!

As my husband so eloquently stated, "Check one more treatment off the treatment to-do list!"  We celebrated several times this weekend the fact that I am now three tumors closer to beating this cancer than I was about a month ago.  I am almost recovered from my lung surgery & the neuropathy pain from the surgical incisions is getting better each week.  So, WOO HOO!!!

We also enjoyed a visit from Elyse this weekend, had a great hike at Freemont Alder Open Reserve, had a wonderful dinner with friends, and enjoyed a couple of fun events at Brookside (our local family tennis and swim club).  It's shaping up to be a nice summer!

   

Hike with Hubby and Elyse

My girls enjoying cheese fondue together

Now I move on the next procedure - never a dull moment around here! ;-). On Friday I will have my colonoscopy, as it has been one year since my colon cancer diagnosis. We do not anticipate finding anything suspicious, as my recent CT scans have shown no findings in my liver, abdomen, or pelvic (yay!!!), but my surgeon wants to take a look at his surgical handy-work, specifically at the anastemosis (the technical name for the area where he attached my small intestine to my large intestine after removing the section of bowel that contained my tumor).  He will make sure there is not excess scar tissue present and verify that indeed I otherwise have a health happy gut ;-).

June 2nd marks the day I start back on chemo. I do not look forward to returning to this every two week regime.  I think it will end my post here and not think about this until I have to.

On a happier note, I think I will begin to ease back into playing some tennis in the coming weeks. Nothing too competitive.  Just social tennis to start, but it makes me very happy just to think about it! ❤️

I hope you all had a wonderful Memorial Weekend too!

Cheers, Jacki

Recouping Well from Surgery... Thanks to my Team!

I can always tell when I'm overdue for a blog post.... My People start calling, texting, and generally reaching out requesting more details.  I have such a wonderful supportive team of people in my life, & I appreciate all of you so much!  So, here goes....

Surgical Post-Op Report:
Today is 2 weeks and 3 days post-op from removal of the TWO, left upper & left lower lobe, lung tumors & the day of my surgical post-operative appointment.  For the most part it was all good news :-)!  Dr. Burt told me that the final pathology report showed clear margins (clean of cancer cells) for both removed tumors!  WOO HOO!!!  He reviewed my chest x-ray and looked at my surgical wounds, and reported that all was healing as expected.

I have some annoying residual post-op pain & numbness in my left rib area that refers forward from where the chest tube was inserted.  This kind of nerve pain is called "neuropathy".  It may be temporary while I am healing, but for some it can persist. I hope not for me, as it is really uncomfortable at times & I hate taking pain meds.  He started me on a pain medication specifically for nerve pain called Gabapentin or Neurontin. I hope it doesn't make me too sleepy, as I understand it can have this affect :-(.  I need to be functional!

Otherwise, I am regaining strength & energy each day. I have been out walking and beginning to increase my distance and elevation. I do get short of breath a bit, but it sure feels good to expand my lungs and  exert my self!  Cooper is enjoying it too!


So, what's next....
The other appointment I had today was a 4 hour radiology cyberknife preparatory appointment. They made a mold of the back side of the upper half of my body & marked my skin to ensure that I will be in the exact same position for each radiation treatment. Then they prepared to do a PET Scan.  For this scan they had me not eat for 8 hours, then deliver sugar tracking medium, had me wait in a quiet dark room & rest (zzzzzz......), then put me in my upper body mold (made earlier) for positioning & run the scan to detect the areas of faster sugar uptake (tumors metabolize sugar more quickly than normal healthy cells).  Without letting me move, they then deliver IV contrast & do a CT Scan of my chest on exhale & one final chest scan without contrast on inhale.  All three of these scans will be overlayed on each other to create the radiation delivery parameters to obliterate the remaining right upper lobe tumor.  That all took about 4 hours this morning. Then…, I finally was allowed to eat!  I am now prepared to have the cyberknife (a.k.a. SBRT) treatment on 4 consecutive days; May 20th, 21st, 22nd, & 23rd.  The tumor destruction & scar remodeling takes several months to complete following the radiation treatment, so they will monitor my scans every 3 months for the next year+ to ensure there is no further tumor growth in the area.  With any luck, this will be it for that tumor!

Plan for restarting chemo:
Craig & I met with my oncologist just prior to surgery to discuss my long-term chemo plans.  I will restart every 2 week chemo on June 2nd for about 3 months.  The plan is to give me what I was previously on, Folfuri (Arinatecan & 5FU), as it was working to stall tumor growth, plus add the drug Avastin.  Avastin is a targeted therapy that targets the blood supply that sustains & allows tumor growth.  Avastin has been proven very effective and has very few side effects.

After three months of the above plan, if all scans & labs look ok, I will stop getting Arinatecan, start an oral daily version of 5FU (pills taken at home), and go in to the infusion center every 3 weeks for Avastin only.   This will continue with monitoring & guidance though regular scan results &/or until I am declared in remission.

More Scans & Procedures Pending:
With all the attention on my lung scans, we are behind in checking my abdomen & pelvis.  So, next week I will squeeze in a CT scan with contrast of my abdomen and pelvis to ensure no tumors have cropped up in those regions.

May 1st marked the one year anniversary of my colonoscopy that unveiled my cancer diagnosis.  So, I am due for a repeat colonoscopy. With all the other treatments going on, I will fit this in around
mid-June.

Keeping up with my treatments, procedures, & scans has been a full time job of late. It has been challenging to keep up with my daily green smoothie commitment, exercise routine, meditation/yoga/relaxation, not to mention, the rest of life with three kids and a dog plus preparing Kayla for prom and graduation!  I am still on track, but it's quite a challenge with all that has been going on.  I am hoping things will slow down into a quieter routine for the summer, because right now I'm pooped!

I'm off to bed; today was a very long day!!!

I will close with a video that expresses my feelings about cancer at the moment.
Thanks, Rasheeda, for sharing this with me. 

"Hey Cancer" 

http://m.huffpost.com/us/entry/5253930?ncid=fcbklnkushpmg00000063

Extra Day in the Hospital

Hi Friends & Family,
My surgery went well. The surgeon removed the left upper nodule/tumor via wedge resection. Then he took a look at the left lower lobe tumor to see if it could safely be wedged out as well; it could so he did!  I am now minus two of my three lung tumors. The extra wedge resection has caused a bit more chest tube drainage and pain, so bought me an extra day in the hospital.  I will be going home tomorrow!
Feel free to give me a call.  I'm a bit sleepy & board in here! ;-)
Take care!  Jacki

Ready for Cancer Surgery #2

Tomorrow is the day I kick the butt of one of my lung tumors!  I would really appreciate all of your prayers, positive thoughts, healing energy, and love sent to me at Stanford Med Center tomorrow morning, as they surgically remove #1 of 3 tumors.  I plan on it going smoothly & to be home in 2-3 days.  Recovery isn't supposed to be too bad; mostly rest, pain meds, some breathing exercises, & no lifting over 10 lbs for two weeks.  My sister, Deni arrived today & will be around for ~10 days.  It is so wonderful to have her here to help out ❤️!  Thank you also to my very generous friends who are bringing meals over the next two weeks.  You are all so kind & supportive!

I have had a wonderful & relaxing weekend to prepare. On Friday I had an invigorating hike to the Montalvo Outlook & lunch with my tennis buddies.  It was beautiful, warm & full of everything in bloom; so much so that my allergies are reaping havoc & have caused me a case of laryngitis ;-(. Friday evening it was ladies night catching up with my buddy Shari at Enoteca wine bar.  Craig has been on-call this weekend, so we curled up & watched a movie Saturday night.  I had another walk with this morning with Sue & our dogs, Cooper & Lulu, a lovely afternoon with the girls & Deni watching  Harry Potter, & an evening of making calzones.  I am now relaxed & ready for tomorrow ;-)!

I'll post soon & let you know how it all went. 

Hugs to all, Jacki

Honored….. in Relay for Life

I just wanted to share the warm & fuzzy feeling I have for being recognized by two very special people in my life.  Both have honored me by walking in the Relay for Life in support of American Cancer Society.  I am very happy to be a part of their motivation to help fight cancer!

My beautiful and compationate niece, Sarah Shinn, headed-up her team called the "Jacki Husslers" at Colorado State University at Boulder this last weekend.  This was her post:

"Our team is named after my beautiful and amazingly tough Aunt Jacki and Amanda Hogen's late grandfather Harold "Huss" Hogen. It would mean so much to me, my family, and many of my friends if you donated any extra dollars to our team! Time to kick cancer's ass, people."

The second team, headed by my good friend, Lisa Hoffman, walks on April 25th. Here is her post:

"This year I Relay in honor of 4 very special people: Richard Hoffman, my father-in-law, who died 1 1/2 years ago after a one month battle with Pancratic Cancer.  May his memory be a blessing.   Patti Stevens, BFF, who is 12 years out from her Breast Cancer battle.   Jacki Berlinberg, who is currently fighting back against Colon Cancer.  Go get your colonoscopy!!  Donna Gein-Logsdon, friend and community leader.   She is the reason I became involved in Relay. Donna took our Relay from a "baby" relay to the 5th largest Relay in California.  May her memory be a blessing."It's time to Celebrate, Fight Back & Remember!!!   Together, we can finish the fight!

I am sorry I missed posting Sarah's donation period, however if you'd like to support Lisa's team, please visit  http://main.acsevents.org/goto/lisahoffman to donate.

What is Relay for Life:

At Relay For Life events, communities across the globe come together to honor cancer survivors, remember loved ones lost, and fight back against a disease that has already taken too much. The funds you raise truly make a difference in the fight against cancer – just ask one of the nearly 14 million cancer survivors who will celebrate another birthday this year!

Relay For Life teams camp out overnight and take turns walking or running around a track or path at a local high school, park, or fairground. Events are up to 24 hours long, and because cancer never sleeps, each team is asked to have at least one participant on the track at all times. 

I hope to participate on a team in the near future, but for now I am honored to be honored :-)!
Thank you, Sarah, Lisa, and all who have participated or plan to participate in this fabulous event in support of the American Cancer Society!

Jacki

If you'd like to learn more about Relay for Life &/or find out when one is happening near you, visit http://www.relayforlife.org/learn/whatisrelay/index

Welcome to My Blog

Welcome to my blog!
If you'd previously followed me on email, then CaringBridge, I apologize for moving around.  I promise this is my final HOME.  It is very important to me to increase public awareness about colon cancer, and a public blog is the best way to accomplish this.  Through sharing my story I hope to help to prevent colon cancer by increase awareness, educating others, and to assist others who share my diagnosis to learn through my experience, all while keeping my friends and family updated on my journey.  This blog is public, so feel free to share it with anyone you feel could benefit from it's content.

Blog Basics:
If you've never subscribed to a blog before, it's super simple. Here are some basics.
1)  How to subscribe; a two step process.
- Step 1, find the box on the right-hand sidebar labeled "Subscribe to Jacki's Blog" just under my photo. Put your email address in the box and hit submit.
- Step 2, you will receive an email asking you to verify your subscription.  Click the link to verify, and you're done!
* You will not receive any spam, your address will not be shared, and you can easily unsubscribe at any time.
2) Why subscribe? When you subscribed you will receive an email each time I post a new journal entry. It's just an easy, convenient way to keep up-to-date on my posts.  I may not consistantly post all updates on Facebook, so I encourage you to subscribe if you want to stay up-to-date.  Also, if you wish to reply to a journal entry or post on the Guest Book page, you will need to be a subscriber.
3) How the blog is set up - click the tabs under the title & explore the three pages:

• Journal - a place for me to post my updates, educational stuff, photo's, links, etc.  I have posted all previous/archived posts in this area chronologically. 
• Photos - a place I can load photos just for fun. I will not post names on photos for privacy purposes.
• Guest - the place for you to leave an encouraging note, ask questions, or leave positive feedback/suggestions.  I have set this up so that I must approve posts since the site is public, so you post will show up after I have read and approved it.  *A note to friends and family:  Feel free to post here, however if you prefer to be a less public ...  I love to get your emails texts and calls anytime! You are my people; I love you and need your positive energy to fight this battle!!!  

Now that that is out-of-the-way, here is what's going on with me.

I apologize that this is going to be a very long post.  But, there has been a ton of stuff going on since my last post!  I will try to not be too detailed and rattle on.

1)  We finally have a plan of action to treat the tumors (nodules) in my lungs!  

First some follow-up on my bronchoscopy results: The bronchoscopy was done to try to determine the reason for the residual inflammatory response in my lungs after my pneumonia.  I am happy to report that all the results were negative. This means they found no bacteria, virus, or malignant cells in the bronchoscopy samples & biopsies.  It was decided that we should give me a trial of one month of steroids to treat the unresolved inflammation in my lungs.  I have been on a prednisone taper for the last 2.5 weeks at a fairly high dose (60,40,20,10 mg). Side effects of prednisone can be fairly challenging; poor sleep, mood swings, headaches, jitteriness, and it's hard on your stomach.  I am tolerating it well and am more than halfway through the taper.  I am hopeful and excited to see if it will be effective in resolving the inflammation, which should make my lung CT scans clearer to view.  With that addressed we could proceeded with making plans to treat the lung tumors.   

After consulting with the Stanford thorasic oncology surgeon and radiation oncologist we now have what I think is a smart & effective plan of action.  There are three nodules each 1-1.5 cm in size that are believed to be cancerous and able to be removed/treated. There are also two or three other smaller nodules that are either too small to treat and/or have not proven themselves to be cancerous.  We will continue to watch these for further development via CT & PET scans.   On Monday, April 21 I will have surgery to remove one of the nodules that is positioned more laterally in the left upper lobe and can be easily removed via wedge resection using the VATs (video assisted thorascopic) procedure. The procedure will have me in the hospital 2 to 3 days, and should be fairly straightforward with minimal pain. A full recovery will take 2 to 4 weeks, so my return to tennis will have to wait ;-).   I am grateful to my sister, Deni, who will be coming into town for much of my recovery to help out.  I might ask a few friends to help with a few meals and to help walk Cooper, but I am glad that it doesn't sound like a terribly tough procedure to recover from.   The removal of this tumor surgically provides an opportunity to send the tumor to pathology for further study to aid in more targeted therapy.  Stanford is also doing some interesting genomic research on metastatic colon cancer tumors, so I have volunteered to submit my tumor to the study.   

The second part of the treatment plan will start one-three weeks post-op and include obliterating the remaining two nodules via cyber knife radiation treatments.  These two nodules are located more central in the left lower lobe and right upper lobe.  This amazing technology allows intensive radiation to be delivered directly into the tumors with minimal damage to the surrounding tissue.  I will receive 4 radiation treatments; one per day for 4 consecutive days.  To keep me in the same position for each treatment they will make a mold of my body/chest area for me to be placed into for each treatment. Also, because the lung moves with breathing it is essential that I am taught to hold my breath using a video game-like training module (a tool developed by Stanford) to "still" my lung while delivering the radiation.  After the radiation is delivered the treatment will continue to obliterate the nodule and a 5mm margin around the tumor over the next several months.  The treatment is completely painless & side effects are minimal; primarily fatigue.  There is some risk of developing inflammation in the lungs after the treatment which would require more steroids.  But most people are able to continue their daily routine with little interruption.  I will begin the training & mold preparation one week after my surgery & the treatments will begin 2 weeks after that.   The results will be monitored by CT &/or PET scans in the months to follow. 

Whew!  That is the plan....  March was super busy with consults & planning.   April & May will be busy with prep, surgery, & treatments.  Let's not forget that throughout all this I have been & will continue to get every two week chemo treatments, shots of Neupagen to keep my white count from dropping, acupuncture for the neuropathies, and other treatments.  There will be some adjustments to accommodate for healing and preparing my immune system, but all this keeps on coming.  So, thank goodness for the boost in energy from the steroids and my smoothies.... I have & will continue need it!  But, mostly, I am thrilled to have a plan to get these tumors out of my lungs!!! :-)

2) It finally happened.....  I got really sad about my cancer :-( ….
Over the last couple of months, with the delays in my treatment from my lung complications, the ankle sprain slowing me down, the gloomy raining skies, a million appointments and treatments, and the stress of it all on me and my family…. it finally got to me.  I know....  it was long overdue!  Denial is a powerful thing.  Through the help of friends and an amazing organization called Cancer Care Point, I have found a support network, services, and professional help to assist me in navigating what can best be summed up as learning to live with the unknown.  I need to find a way to be at peace within while I navigate the many unknowns that are an integral part of living with cancer.  I now feel like I am plugged-into the services I need,  and I am learning to manage the emotional side of my disease.  Please, do not mistake this "sadness" as me losing my positive attitude, because I am still confident in kicking cancer in the ass!  I just need to give my psyche equal time and importance along this journey.  

3) Food as Medicine:

I continue support my immune system thought eating well; minimal white sugar, cut out processed foods, more fruits & veggies/mostly organic when possible, whole grains, more fish/less red meat. I also have been doing surprising well with my commitment to having a green smoothies every day.  The natural anti-inflammatory effects of food and spices added to my smoothie & daily diet have been quickly apparent.  Herbs & spices such as tumeric, ginger, garlic, rosemary and mint, and foods such as greens, berries, cucumbers, green tea, and others have helped to calm and reduce the negative side effects of chemo on my mouth & gut,  as well as increasing my energy level.  I continue to study about the effects of nutrition in treating cancer and other chronic conditions.  There is so much to learn!

I have want to share of a couple of helpful healthy eating resources that are helpful in improving anyones diet:  

• Have you heard of The Food Babe?  On Facebook search "the food babe" and take a look at her posts. If you like what you see like her page and/or subscribe to her blog http://foodbabe.com. You will not regret it! She is full of helpful healthy eating tips on selecting whole nutritious foods, tips on juicing, ordering healthy selections at your favorite restaurants, GMOs, etc.  She was the woman who has recently been preasuring Subway to remove the ingredient used to make yoga mats from their bread!  I have learned a lot from reading through her site and reading her posts.

• The Clean Fifteen and The Dirty Dozen.  Are you confused about which fruits and vegetables are most important to buy organic vs. conventional?  The Environmental Work Group has put out a app for your phone that lists the top 12 items that contain the most pesticides, so are best to purchase organic.  At the top of the list you might be surprised to find apples, strawberries, grapes & celery.   The Clean 15 refers to the items that use less pesticides, so may be okay to buy non-organic/conventional.  Just search your App Store for The Dirty Dozen to find the EWG app for quick grocery store reference.

4)  Making an Impact:

Colorectal Cancer(CCR) Awareness Month came to a close in March, but it is never to late to schedule your screening appointment.  Finding and removing silent polyps (pre-cancerous spots in the bowel) though having a routine colonoscopy could save your life.  I've received several notes from friends telling me that my recent posts have encouraged them to schedule their appointment.  This makes me very happy!  I was thrilled to learn that my post also motivated a friend and colleague/public health nurse & administrator to plan a CCR education event at her hospital. Way to make an impact, Abbie!  

5) This and That - Life Goes On
Elyse was home from college for a week at the end of March and we had a nice visit and a great day at the Monterey Bay Aquarium. It was great to have her home!







Kayla had a successfully participated in the schools Benefit Fashion Show fund raiser; good work!  She has also now received all of her college acceptances and has some soul searching decisions to make.   She was accepted to many wonderful schools, so needs to visit a couple and weigh her options…

 Jenna has had a performance filled couple of months with Winter Guard which is now done, so she can focus on the musical Les Miserable that will show at her high school the last weekend in April and first weekend in May.  Come check it out!









Craig, Jenna and I are on vacation this week and plan to get away for a few days of R&R in Carmel Valley.  I plan to do yoga, hike, get a message, and generally try to re-charge before I enter this next phase of treatment.

Hugs and love to all!