On April 15th, 2013, the day of the Boston Marathon bombing Craig was in Boston of college
visits with Kayla and Elyse was in Israel and Poland on the March of the Living Trip. On this day,
I also received a call thatchanged the course of my life. I had injured my back playing tennis a couple
weeks ago and visited my doctor to get some meds to settle the back spasms that ensued. My doctor
suggested that we draw some cholesterol levels and routine labs and invited me back for a physical
(as it had been 18 months since my last check up). She called me on April 15th to tell me I was
anemic (Hematocrit of 9.3) and that we needed to do a work up to find the cause. It was not a
gynecological issue, so it had to be gastrointestinal (an upper or lower GI bleed), so we scheduled
an endoscope and colonoscopy.
May 1st, 2013 – the upperendoscopy showed no signs of bleeding (EGD), however the colonoscopy
reveled anapproximately 3 cm tumor in my Secum (the area of the large intestine nearestwhere it
meets up with the small intestine: in the right abdomen near where theappendix is found). The
biopsies reveled adenocarcinoma: See follow-up visit notes:
Copy of CT, Biopsy Report, & MSI report received. Biopsy: Adenocarcinoma with moderately
differentiation. "Better than poor differentiation".
CEA is 1.1 = Normal / "boring" / low
Important: Wants me to tell Peter Youn, MD (surgeon) to do special genetic test on tumor = "micro
satelli instability (MSI) testing on the tumor". Either way I need tell siblings to notify their doctors that
"their sister has colon cancer/adenocarcinoma at age 49." Deni -colonoscopy now & Travis in ~ a year.
Recommend oncology consult after surgery based on findings (Drs. May or Tom Chen, La Bebe,
Rubinstein).
I was promptly scheduled to see a colorectal surgeon.
-------------------
Dr. Peter Youn, General Surgery - 5/8/2013 - Specializes in Colon & Rectal Surgery
Right Hemicolectomy scheduled 2pm on Tuesday, 5/14/13
In hospital 5-7days.
How much is removed? 1/3 of large bowel w associated lymph nodes. Will palpate liver & eval for
mets.
Approach/Incision? Open approach with two incisions: one above & one below umbilicus~3-4 inches
each.
How long until we get Cancer Staging results? Pathology report will take ~5 days to getback.
-If needed, chemo is typically ~6 months, & typically well tolerated.
-How long until anemiais resolved? 2-3 months w/iron.
-Causes of my Colon CA? Genetic (will test for this) or just bad luck/random. Tumor likely started
with diverticulum & evolved to cancer; likely been growingfor 2-3+ years.
----------------------------------
Shared on May 13th, 2013
Hello to My Awesomely Supportive Friends and Family,
I appreciate all of thelove, support, prayers, and general positive thoughts my family and I have
received since learning of my recent colon cancer diagnosis. I feel sovery fortunate to have such
wonderful friends and family to support us throughthis! We have received many offers of "how
can I help?" I am sending this email to help Craig and I to distribute information about how you
may be able to help and to keep you informed abouthow things go with this weeks surgery and the
recovery to follow.
In summary: as we have lost track of who we have told what and when:
I have a tumor in my large intestine that was discovered during a colonoscopy which was done to
determine why I was anemic (anemia discovered with routine labs). The CT scan thankfully shows
no evidence ofmetastases, and cancer marker blood test is normal, indicating likely early disease process.
There is no way to know exactly what stage the cancer is until after surgery (and pathology reports),
but we are hopeful that it was discovered early and is not too invasive; itwill be a few days after surgery
before we know.
Surgery to remove thesection of the large intestine where the tumor is and the associated lymph nodes
(a "right hemicolectomy") is scheduled for Tuesday, May 14th at 2 PM.
My hospital stay isestimated to be 5-7 days by the surgeon. I will not be able to drive oreat solid food
for at least two weeks post-op.
Craig will use this mail distribution to let you know how things go. Many of you (if local) have so kindly
offered to make meals and help with driving. I have arranged two weeks of rides for Jenna to get home
from school (Elyse and Kayla can drive themselves and will take Jenna to school most mornings). As
for meals, my good friend Sue Leiter has offered to coordinate a few meals to help my family while I
am recovering & not able to cook for the family. If you are interested in helping out with meals, please
contact Sue at sueleiter@comcast.net or (408) 205-5467. Thank you so much for this very helpful
support!
I am in good spirits and feel well. I am thinking very positively and hold onto the belief that we learned
of this early enough for me to make a full recover. I feel toogood and know too many positive cancer
success stories of people my age to think otherwise! Craig and the girls are wrestling with it all, but are
also thinking positively & doing well overall.
I love you all and appreciate your support while we go through this "bump in the road".
Sincerely, Jacki
------------------------------------------
Shared on May 14, 2013
Hello all:
Just a quick update -Jacki's out of surgery; the procedure went well. She's resting comfortably.
Thanks to all of you for your concern and best wishes.
Craig
---------------------------------------
Shared on May 15th, 2013
Okay, so this is not a cake walk, but I have been up for a stroll down the hall a couple of times and up
sitting in a chair for an hour or so. Gotta love that epidural !!! Jacki
-----------------------------------------
Shared on May 18th, 2913
Hello Friends andFamily,
I know it has been a few days of silence while I recovered in the hospital, but I have just arrived safely
home this evening. I am healing well, and look forward to sleeping in my own bed! I am a bit sore still
and moving slowly, but it feels goodto be home nonetheless. As some of you have heard, and others
not yet -the news from my pathology report was not as good as we had hoped. Thecancer had spread
to 15 of the 23 lymph nodes that were removed. Theyremoved a benign nodule on my liver, which
otherwise looked clear of disease. So, were does this leave us? I have stage 3 colon cancer and will
require chemotherapy for about 6 months. There is a chance of recurrence,so there will be vigilant
testing and monitoring along the way. I have anexcellent surgeon and oncologist and am confident
that every effort will bemade to help me to fight this and find health on the other side. I amstill in shock
and having a tough time accepting it all. It will take abit of time, I suppose....
In a lighter note, I do feel extremely fortunate to have so many wonderful supportive people in my life.
My refrigerator overfloweth with food from the heart, my kids have arrived safely and happily to all of
their various destinations, and I was blessed with many loving visitors in the hospital. I thank you with
allmy heart for your kindness, and I will appreciate your continued support whileI kick the ass of this
cancer business!
Sincerely, Jacki
-------------------------------
Shared on May 20th, 2013
Tonight Craig took the girls & I out for a much
needed outing to Yogurtland to keep me from
being overly house bound. It was perfect!
Recovering quickly, but can't drive for three
(not two) weeks ;-(.
Otherwise, I'm resting and recouping quickly!
Love to all! Jacki
----------------------------------------
Shared on June 11th, 2013
Hello Family & Friends,
I am now 4 weeks post op from my colon resection surgery and doing well. I amwalking a mile + ,
driving, running errands, and off all pain meds. Istill fatigue easily, but this is improving every day.
Last week was fullof preparation and celebration. On Tuesday I had my MediPort line placed in my
chest & neck area. This line provides quick access to a larger veinfor delivery of the chemotherapy.
On Wednesday Kayla completed her junioryear of HS, Thursday we celebrated Elyse's graduation
from high school, &on Friday celebrated Jenna's graduation from middle school. It waswonderful to
have family around to enjoy the happy occasions!
Today I had my first appointment with the oncologist. I learned that I will start chemotherapy next
Monday, 6/17. I will get 12 rounds of a combination of chemo therapeutic medications called Folfox
(5FU, Oxalliplatin, & Leucovorin) every two weeks. Each infusion session will take two hours to
deliver about half of the dose, and then I will go home with a pump that will deliver the remainder of
the infusion over the next 46 hours. This slower delivery helps to control theside effects. I will potential-
ly feel poorly from some of the sideeffects the week following each infusion & will feel better the
second week. I will have several medications available to help control any side effects that occur.
I am not looking forward to going through chemo, but am anxious to get treatment underway & reach
the end of it. Throughout and after treatment I will be monitored forsigns of recurrence with regular blood
tests and CT scans of my pelvis, abdomen, and chest every 6 months. If I remain cancer free for two
years there is a good chance the disease will not re-appear. That is what I am planning for; two years of
being cancer free and a lifetime of health to follow. This may be a challenging 6 months, but I have
confidence in a healthy future.
Thank you to all who have helped my family and I with driving; bringing meals, fruit, flowers, cards,
emails, and notes; visiting; walking with me; and your generally supporting me and sending positive
thoughts. Your support has allowed meto focus on my recovery and to better prepare myself for coming
therapy. I feel so blessed to have each and every one of you in my life. I could not do this without you!
Love to all, Jacki
-----------------------------------
Shared on June 28th, 2013
Hello Friends and Family,
Apparently an update is in order, as many are wondering how I have faired with round one of chemo. In
short, it was not fun, but I have weathered the storm fairly well. I received my first round or chemo a
week ago Monday (June 17th) and willget round 2 on Monday, July 1st. I received Oxaliplatin, IV
steroids (used to reduce swelling in the nausea center in the brain), and an anti-nauseamed that lasts 5
days. These infusions were done on-site at the infusioncenter over 21/2 hours,
then I went home with a small round pump, about the size of a tennis ball
(see photo attached), that infused 5FU over the following 46 hours. They
infuse this drug slowly to reduce the side effects. The pump is very light and
compact, so fits nicely in a pocket or small fanny pack until I returned to the
infusion center to get "unhooked".
The side effects began immediately and evolved over the next several days.
On day one I had the predicted sensation of pins and needles ("parasthesias")
in my throat& fingers when drinking or touching cold items. I got a significant
headache that waxed and wained over ~3-4 days (side effect
of the anti-nausea med),and was "wired" from the steroids for 24+ hours.
I have hadfairly mild nausea that was manageable, while maintaining a decent appetite throughout the
week to follow. Fatigue set in on day 3. On day 5 I began to get sores in my mouth that have now
healed ;-)! I had started chemo with the tail end of a cold that quickly turned into a sinus infection;-(.
I saw the oncologist on day 7 post chemo where she aggressively managed each of these side effects
with medications (antibiotics, a special mouth rinse [compounded by my dear friends at Leiter's Pharmacy
and antiviral mouth sore prevention meds).
I learned quickly that the bulk of these mild-moderate side effects were best managed by being outside
in the fresh air and distracting myself with walks, getting out, listening to audio books, gardening,
watching the drama unfold at Wimbledon, movies, hanging out with friends, and getting a good nights
rest. IF I did not stay busy/distracted, it was too easy to fixate on these annoyances & let them bother
me more than they needed to. Thank you to all that have helped distract me; spent time with me going
on walks, go out to meals, stopped by for visits & glass of wine, join me for a matinee, recommended
good books, sharing home fitness tools and tips, etc. Keep it coming!
Today I am almost back to pre-surgery energy, but know as the weeks of chemo progress this will
change. This week I was able to walk my pre-surgerywalking distance and made it to the gym for a
40 minute stationary bike ride & light weights. I am planning to start attending some gentle yoga classes
and do some home-based work-out routines (trying to lmit time atthe germy gym while immune
compromised) in an attempt to maintain some level offitness (until I can return to tennis in August
(as my energy level permits).
My husband and the girls are dealing with this like troopers! They are all busy with their various jobs
and social activities, which serves to keep things more normal. Normal is GOOD!
I hope all of you are enjoying your summer so far. I know I am glad to have the nice weather and a
break from work!
Sending love & hugs to all, Jacki
------------------------
Shared on September 6th, 2013
Hi to All,
I had not realized thatso much time had passed since I had send an update. I have now completed 6 or
12 rounds of chemo - half way there! Before I started Chemo theoncologist had told me the nausea
would not likely get any worse - and it hasjust stays mild and waxes and wains over the first week after
chemo. Thefatigue, however is cumulative; worsening a bit with each round. I am nolonger able to
fully recover my full energy before I get another round twoweeks later. I have been able to keep active,
playing bit of tennis andwalking, which seems to help a great deal. However, there are days that I just
allow myself to be a slug on the sofa and watch the US Open, a movie, or read. There are other annoy-
ing side effects; parasthesias - uncomfortablesensations/pains triggered in my tongue, mouth and hands
when I touch or drinkcold things; mouth sores; dry skin; and gastrointestinal upset. These are best
addressed by drinking room temperature drinks, wearing gloves whilegetting items from the freezer,
constantly brushing, medicated mouth rinses,etc... but, most of all, I just try to ignore them and distract
myself from focusing on them too much. Thank you to my Chemo Night-Out Ladieswho help to keep
me busy and distracted after each chemo round with dinner, cocktails, and/or a movie. It is super help-
ful to have something to lookforward to each time I head into the next round. Let me know if you care
to join us!
Wednesday I had afollow-up CT scan of my chest, abdomen, and pelvis to make sure they are still clear
of any metastasis. I do not anticipate that any will be found, but should learn the official results when I
see my oncologist next Tuesday beforeI get round 7. If I continue to tolerate the chemo well and we
stay onschedule, I should receive my last chemo on November 18th. The effectswill stay with me for
a couple of weeks and then I should progressively regain my strength and health over the next month
or so to follow.
I had previously planned to go back to work when the new school year began, however the school
district was not able to accommodate my need to adjust my work duties while on chemo. So, I am on
medical leave until January 1, 2014. I was not happy about this at first, but now realize that it would
have been very difficult tobe at work and take care of myself and my family while managing the effects
of chemo therapy.
So... since I am at homemore for a few months we decided to adopt a puppy. He is a lab, like our
recently passed, Bailey. His name is Cooper, is 10 weeks old, growing like a weed, and cute as ever
(see picture in photos). He is a ton of fun, full of energy, and adds much joy to the house!
--------------------------------
Shared on November 19, 2013
Hi Friends & Family,
It is with mixed feelings, but mostly relief that I report that's round 12 of chemo was cancelled today
due to the lung symptoms that I am exhibiting. I have signs of swelling in my lungs likely due to the
chemo, therefore round 12 would only add insult to injury. I am taking a round of steroids & going to
have a lung/abdominal CT scan w contrast soon & may consult with a pulmanologist to evaluate & pre-
vent long term or ongoing issues & re-verify nometastases of my cancer. Let's hope there are none on
either count!
So, I am done with chemo.... this is very strange to say, as I had expected one more round. The
oncologist had told me at the first consultation that it was possible (& common) for people to not tolerate
all 12 rounds. I just didn't expect this tobe me, as I thus far had been "sailing through". So.... no
more chemo - Yeah!!! Let's just hope the 11 rounds I did get were enough. I continue to have positive
vides on this front.
In the short term, I am planning to enjoy NOT feeling crappy from a new dose of chemo, begin my get
health program as tolerated, and enjoy spending the holidays with my family. Although the effects of
chemo can last months, I hope to begin to progressively gain some energy back though regular exercise
and healthy eatingas tolerated & or course treating this lung issue as indicated. Feel free to call &
schedule a walking, tennis, or other active &/or social date in the coming weeks.
Thank you all again for your ongoing support, and I wish you all a Happy Thanksgiving & Hanukkah
holiday season!
Cheers, Jacki
---------------------------------------
Shared on November 23, 2013
Hello to my Inner Circle,
I was hoping my lastpost was truly all you would hear from me for some time, however I have
encountered a Bump in the Road. I was admitted yesterday to Good Sam for a work-up for continued
fevers. My current status is that I am beingtreated for bacterial pneumonia & require a few (?) days of
IV / hospitalbased antibiotics. I guess the chemo left me a bit depleted! As with any patient just off of
chemo things can be a be a bit less straight foreword & I am no different. They are checking to see if I
also have a blood infection, so they need to more labs, maybe take out my central IV line(which I likely
no longer need anyway), etc. So, while I get another day or so of IV antibiotics, they will sort out when
I can switch to oral meds, any addition procedures needed, & most importantly - when I can go home!
My best guess of getting out of here at this point is - best scenario Monday / worst case Wednesday.
Hopefully that will be theend of things (with follow-up of course). I am just hopefully to spend some
family time over the holiday & rest up. Ironically, other than occasional sweats & some fatigue - I feel
well. Not even much of a cough. Go figure!
This is just an FYI - I tell you about this just because you are my people :-*, and you have been so
wonderful to me (& I don't want you mad at me for keeping you in the dark ;-). I am here resting,
healing & getting my antibiotics. I honestly need nothing! (Just time, rest, & meds to heal).
Enjoy your holiday preparations & festivities. I wish you a wonderful Thanksgiving!
Hugs from the hospital ward, Jacki
------------------------------
Hospital Stay: November 22-26th, 2013 - Dx Aspiration Pneumonia - complication from tongue
parasthersia/difficulty swallowing (side effect from chemo - Oxcaliplatin).
Removal of central line due to fever and + blood culture 11/25
IV antibiotics Vancomyacin & Levofloxacin – home on po Augmentin and Levoquin
Home in time to spend time with my wonderful family for Thanksgiving!
12/10 – CT Scan of Chest, ABD & Pelvis at VRI
12/13 – PET Scan
12/17 – Lung biopsy ofLeft Upper Lobe Nodual (Positive result for Colon CA).
Diagnosis: Metestatic Colon Cancer (stage 4) with mets to the lung.
12/17 – Consult with Pulmonary surgeon, Steve Schwartz, for lung metastasis.
12/18 - Consult with Oncologist to share Stanford Tumor Board recommendations; give me 3 rounds
of chemo followed by lung tumor removal if indicated vs. surgery then chemo. Complications or cloudy
lung scan secondary to recent pneumonia andinflammatory changes in bases of lungs.
Hawaii with Family December 20-27, 2013
Shared December 29th, 2013
Hi Family & Friends,
I was hoping my previousupdate would be "it" for a long time; unfortunately, this is not thecase. Many
of you are aware that I had a bout of pneumonia in November that ended my chemo a bit early. Follow-
up scans after my discharge showed two small lung nodules, previously seen and assumed benign, had
grown. Abiopsy of one of these lung nodules confirmed that I have metastatic cancer from the colon.
A PET scan shows that I currently have no other detectable tumors in my abdomen, liver or other organs.
I will need more surgery and more chemo, starting in the next couple of weeks, but the order of treatment
(chemo first vs. surgery first) is still unclear at this point. The decision will be made next week after
another interval CT scan.
Of course I am disappointed to have these nodules not be benign as previously thought; however, with
the number of positive lymph nodes that I had removed from my initial surgery it is not a complete
surprise. I am encouraged that thereare treatment options to pursue. Given my age and relative good
health, we plan to aggressively treat to tumors with the goal of cure. The irony of this whole thing is
that I feel better than I have in months, and have no symptoms from these new tumors; they are only
seen by scan.
Having just returned from a restful rejuvenating trip to Hawaii with my loving husband and children,
and surrounded by my supportive and loving friends and family...I am ready to do battle again and kick
this cancer in the ass!
Wishing all of you(& me) a happy and healthy 2014!
Jacki Berlinberg
---------------------------------------
- January 6th, 2013 – Pulmonary Function Test completed at Good Sam Hospital
- January 6th – Decision made to proceed with three rounds of chemo every 2 weeks X 3 rounds.
- Hold off on use of Avastin until surgery decision, as this drug impairs healing.
- Three Rounds of Fulfiri Chemo regime to infuse on 1/8, 1/22 and 2/4 – 2014
- Rescan Lungs the week of ~2/17/14.
-------------------------------------------------
1/17/2014 – Celebrated my 50th with my wonderful friends and family!
Thanks to all who made it a wonderful birthday week or two!
-------------------------------------------------
1/22 – received Round two of three; however my white blood cell count (WBC) was reported to be
low (fractions =1.7). Okay to get chemo, but stressed the need to avoid viral exposures. Received
Neupagen injections x3 on 1/24, 1/25 and 1/28; stimulates WBC production in the bone marrow.
1/27 - Continue to play tennis and walk with friends, but fatigue is and issue this week.
Neuropathies present from first chemo regime in hands and feet reducing my sensation.
