Formation of the Jessica M. Berman Memorial Fund

Jessica's family is pleased to announce the formation of the Jessica M. Berman Memorial Fund.  This initiative has been lovingly established to honor Jessica’s memory and continue her fight against breast cancer.  Please visit the Fund's website at www.WonderWomanFund.org.

Since childhood, Jessica had an affinity for Wonder Woman, the warrior princess fighting for justice and peace.  She came to embody this heroine in her personal battle against breast cancer.  Diagnosed while she was five months pregnant with her son Leo, she became a tireless fighter for her life, and an inspiring advocate and a fundraiser for breast cancer research. 

The Jessica M. Berman Memorial Fund will fund selected breast cancer research institutes that Jessica supported or collaborated with. We are in advanced discussions with a particular Los Angeles-based cancer research foundation regarding a partnership that would include an annual family walk/fundraiser that, in combination with proceeds raised by this memorial fund, will support specified cancer research initiatives.  We expect to have more definitive details on this exciting partnership in the coming weeks ahead.

If you would like to make a tax-deductible donation to the Fund, please send a check payable to The Jessica M. Berman Memorial Fund to the following address:

The Jessica M. Berman Memorial Fund

c/o Macquarie Capital (USA) Inc.

10250 Constellation Blvd

Suite 2250

Los Angeles, CA 90067

The Macquarie Group Foundation has generously agreed to match total donations made to The Jessica M. Berman Memorial Fund of up to $100,000—sharing in the goal of finding a cure for cancer and supporting those continuing to fight this horrible disease.

Farewell Our Beloved Jessica

This is the post that we hoped we would never have to write.  This is the post from the family to let all of Jessica’s friends and followers know that she lost her four-year battle with breast cancer last night in the comfort of her own home, surrounded by a handful of her closest family.  She was 38.

In the twenty days since her last post, Jessica orchestrated her own treatment, which was carried out by family and hospice caretakers.  Her protocol was a myriad of treatments threaded together from the information she found on her own, and through the help of friends in her cancer community, including the Rick Simpson Oil, Ayurvedic treatments, castor oil wraps, charcoal packs, health drinks, and even liquid morphine used sparingly to manage the pain.  We carried out as much as Jessica’s health allowed. 

Jessica believed that cancer, rather than being her master, was her teacher.  She recognized that some of the traditional western approaches did not work for her, so she applied the discipline of her professional life.  She opened her mind, listened to her doctors, became inspired reading other cancer blogs, and so read everything she could get her hands on.  She truly became a student of cancer.  In the end, she learned so much that she was advising her doctors and caretakers, based upon her own in-depth research.  Her approach paid off, as some of her adaptations to western medicine were later validated by independent medical research.

She shielded us from her own grief.  Her determination was steadfast, even after we were resigned to simply making her comfortable.   

Her last day was a summer Sunday.  She lay in a hospital bed, facing French doors open to a bright sky.  As evening approached, the sunset reflected radiant colors on the clouds above her.  Though she struggled with pain, she was ever aware of those in her presence.

People always speak of Jessica’s strength.  We also stand in awe of her strength and conviction.  She knew this, but always said that she was strong only because she had to be.  She couldn’t fathom why anyone would admire her when she never saw another option.  She developed the strength to be a self-made woman, forging a successful career in investment banking and private equity, and a fulfilling her plan to raise a family with a husband who loves her.  Her life may have been short, but she made sure that she accomplished everything she set out to do.  It was this strength that created the magnetism that drew us all to her, and this same strength that she called upon while battling cancer.

Her daughter Abby (5), saw her mom’s pain during these last weeks, and got to help by rubbing Mommy’s feet and putting moisturizer on her legs to make her feel better.  In so many ways, Abby and her brother Leo (3) have been preparing for this for their whole little lives.  They both inherited Jessica’s strength.

When someone is in cancer’s advanced stages, everybody around them feels helpless.  We see it in the outpouring of support from Jessica’s friends, her extended network, and even readers of her blog, as so many of you reach out to ask what you can do to help.  In her last weeks, Jess was aware of this support, and, when we hovered or inadvertently woke her up, she frequently preferred to escape to her phone to check in with your facebook, email and blog posts.

We’d like to thank you, too, for your love, support and encouragement during this struggle.  We are grateful to you.  Regardless of how well you know us, you inspired us as well as her.

It’s our hope and belief that Jess will be remembered for more than just her cancer, and hopefully Abby and Leo won’t be defined by the loss of their mother.  Jess is known for her strength, explaining why she has identified with Wonder Woman since she was five years old.  If strength was Jessica’s superpower, then it came from her gratitude and appreciation for life, coupled with her drive to be here for her husband and children.

It is important to acknowledge that on the outside, her last day was beautiful, but on the inside she was in a swift and sudden decline.  She was battling more pain than she had previously faced.  Our only silver lining was that it left no doubt that her passing was a much-needed relief from suffering.  It was not a pretty process, and in the end, the promise of the hemp oil and the morphine were still no match for the wrath of her aggressive cancer.  No matter how well a cancer patient is cared for, in the end, until we find a cure, this disease is more powerful and does more damage than we let ourselves believe. 

The family is in the process of establishing a memorial fund in conjunction with one or more cancer research institutes.  We expect to have more information in the coming days.  In lieu of flowers, we encourage donations to that fund, or any fund with the goal of finding a cure for this horrible disease.

Not what I hoped for...hospice.

The negative shift in my health has come so fast that I just can't even believe it. Currently I am sleeping all day except for appointments I have. I have a completely distended stomach and the liver is very swollen. It makes it very difficult to eat because of the nausea and the pressure in my abdomen and lack of appetite. I can barely walk up and down stairs without becoming incredibly winded. In fact I prefer to lay in bed than walk anywhere at all. I have zero energy and feel very weak. 

This started about a week ago. It turns out that the rash was not a rash at all but billirubin being released into my skin. Liver functions are significantly compromised. I am in a lot of pain and very uncomfortable. Like I said I can barely walk around. Worst of all, having zero energy also impacts whether or not I can spend time with the kids. Last week Abby was very reactive with me. She doesn't like to see me sick and laying in bed all the time. I don't think I've ever done that the whole time I've been fighting this disease. But I also don't know what to tell her because I keep holding on to hope that there is time left for me. One more thing to do, one more trial to try, one more surgery to fix this. But that is like looking for the holy Grail.

I was able to complete all of the testing for the trial last week and everything seemed fine. They called me on Friday to say that I need to go in on Monday to repeat my blood work because my platelets were too low. They also wanted to repeat my liver function tests. All the results from those tests were very discouraging. I will no longer able to participate in the trial. The liver is too compromised and is in the beginnings of failure.

I saw Dr. McAndrew yesterday on Monday for blood work, hydration, and ended up needing a unit of blood too. After looking at all the blood work and the swelling in my abdomen, she is suggesting hospice. She estimated about three weeks. She also suggested that since my kidneys and heart were so strong that it could be delayed. But I wouldn't really be functional at that point. I asked Mary Lou to tell me what really happens to patients in my condition. She told me that I won't really know what is happening. She said as the billirubin starts building up in my system that it will start to make me confused and disoriented.

I know I have said many times before that you can't make decisions when you're in pain. I am really feeling the effects of that. I just want to be at peace and out of pain. I want to get the hospice in here as soon as possible so they could monitor pain medication and really help me get comfortable. 

The other last hope though very small would be from the ultrasound of the abdomen I had today. If for some reason there is a blockage in the bile duct, then they can put in a stent and then be able to continue some type of treatment. Philomena said, however, that the chance of that was very small, given results of the blood work. At that point I would be able to continue some type of chemotherapy or potentially get back onto a trial once the blood recovered. Once again the problem becomes a) risks and recovery from surgery and b) if the liver is already compromised what type of chemo can you do that isn't metabolized in the liver?

There are so many moving pieces right now like trying to find hospice and trying to find a good therapist/transitional list for the children, and also going for broke to see if there is anything else out there that can help me. Thankfully David is in charge of this for me. He's working hard reaching out to family, friends, doctors and institutions to make something happen. I am living on borrowed time.

I always thought when they said that you had a few weeks or a few months to live that you would take charge and go do things on your bucket list. But when you are in a bad state of health it is impossible to do anything other than sleep in your bed.

I have so many things I still want to do before I go. Bucket list doesn't seem possible. Mostly I just want to put together keepsake boxes with letters, videos and mementos for the kids so that they can remember me. 

Everybody says it sounds like I am giving up. However, at what point do you surrender? At what point do you face the reality that your time is coming to a close and start getting your affairs in order? 

I want to thank everyone for all of the texts, emails, phone calls, visits, gifts, deliveries and support that you have given me over the last few months. I have been hoping to get around to responses and thank you notes (like for my birthday) but there never seems to time.  Please know that I really appreciate your thoughtfulness, love and support. 

I had to write up a medical history synopsis for all the research we are doing. It was incredibly depressing. To see the last four years of my life summarized into three paragraphs of treatments, surgeries, and injections just made me sick to my stomach. When I was less knowledgeable about cancer it seemed like there were a lot of strides being made in cancer research. But many people die every day from this disease and I don't feel like we are any closer to a cure. People may say that cancer doesn't define you, but looking back since my initial diagnosis - I think, how could it not? It has been the biggest uninvited guest in my life for the past four years. Now it plans to rob me of raising my children and being a wife to my lovely husband David... I'm 38.

#fuckcancer

For so long I kept hoping to get better and get back to sense of normalcy. A place of peace. The mental, emotional, spiritual, and physical break that every warrior needs to recharge the battery for the next fight. I hope I can get through this. But my yellow colored wolf eyes are telling me something different...

Medical History:

Diagnosed in September 2010 while 5 months pregnant; no family history of breast cancer, BRCA1, BRCA2 and BART negative. Pathology was ER+ 75%, PR-,  Her2 negative (1+), Androgen Receptor positive 15% (3+). Immunostains showed that the neoplastic cells were positive for CK7, estrogen receptor, and GCDFP-15 (rare cells); they were negative for CK20, TTF-1, HepPar, chromogranin, and CDX-2. Repeated pathology after recurrence -  immunostains performed were reported to show ER positivity in 95% of tumor cells with a staining intensity of 2-3+, negative staining for PR, a Ki-67 labeling index of 21%, and low expression of p53. Immunostaining for HER-2/neu was equivocal (score 2+). HER-2/neu amplification by FISH was negative. 

Initial treatment plan was four cycles FEC-100 (cytoxan, epirubicin, fluoracil). Gave birth 12/2010, then four cycles Carboplatin and Paclitaxel, followed by left breast mastectomy and lymph node removal (15 of 19 positive) on 4/2011, immediate reconstruction with expander. Radiation for 7 weeks with Xeloda boost ending 7/2011. Tamoxifen, Lupron treatments after initial treatment. Metastatic breast cancer confirmed - liver and bones 9/2012. Sought advice from MD Anderson; repeated liver biopsy to get into possible trial; started Xeloda 11/2012. Switched to monthly lupron injections and added monthly Xgeva infusions. On 8/2013 switched to Afinitor/Aromasin combination (terrible reaction). On 1/2014 switched to Abraxane, dramatic improvement in bones - 4 cycles but continued rise in tumor markers;  after 2 month insurance fight and approval; attempted Y90- siripheres procedure - angio-mapping procedure revealed advanced liver disease and surgeon would not do procedure without tumor shrinkage. Switched to Carboplatin/Gemzar and attempted 4 cycles but low blood counts continually delayed infusions. Currently, waiting to start clinical trial for FGFR inhibitor JNJ-42756493, a pan-fibroblast growth factor receptor (FGFR) inhibitor.  Patient has FGFR3 genetic mutation.  

Update

This is the f*cking crap I'm dealing with right now (skin rash photo below) and I want to crawl out of my skin. Literally. And I want to scream and beat on my pillows until I cry with exhaustion...

We think it's contact dermatitis but I won't know until tomorrow when I see the nurse.  My biggest concern is that it could be shingles since a lot of stage four cancer patients develop them towards the end. I really don't think it's shingles; didn't present with headache or fever. This photo may not be suitable for all viewers:

As for the regular update I went to MD Anderson and they agreed that the FGFR trial at Cedars was a good one for me. They didn't have anything for me that was in the immediate future. I asked about the vaccine trials but they said that one could become available in three days or three months but they weren't sure when... They would keep me on a wait list for when something opens up. 

Meanwhile I am supposed to start the screening for the trial, tomorrow and Tuesday, that includes all kinds of lab work, an echo, several EKG, a heart monitor I wear over night and skin biopsy. I'm worried about the skin biopsy part on Tuesday because if this stupid rash hasn't gone away then I might have to delay. 

I'm completely defeated and I just need a damn break. For the past three weekends in a row I have really wanted to do something with the kids but I have not been able to do anything. I lay in bed all the time, all day. I hardly see anyone because I am in pain and uncomfortable (even before the skin rash). I have no idea what Leo and Abby are thinking about me because they've spent very little time with me and when they do see me I probably look very fragile. Or like right now I have blisters all over my face. Lovely!

You can put the crystal ball down...

There's nothing like being in limbo. Living your life doing day to day nonsense so you can keep your mind occupied away from life-threatening decisions. Turns out I didn't need my crystal ball because…dun dun duh…Dr. Friedman won't perform the Y90 procedure. He said before I probably could of but it was risky, not the risks are too high that I would lose liver function so that's that. Now my only option is to start the trial (I start pre-screening tomorrow) and see if MD Anderson has anything for me. I go Wednesday night for a Thursday morning appointment. I met with Philomena Friday and she basically told me that if I don't get into a trial and one that works for then there's nothing more that she could do for me. The problem is the liver. It can't handle too much more treatment and same with the bone marrow. Most drugs are metabolized in the liver so that's crappy news. 

For the time being I've still been on my rick simpson hemp oil (I'm at about a half a gram so still ramping up) and unfortunately it masks the pain but it also heightens it at times too. When I'm high dosing on the oil then I get pain in my liver, my bones and elsewhere. I feel as if the hemp oil knows where it needs to attack and then does so within the body. I'll find out tomorrow if I have to drop this for the trial (most definitely). 

Anyway, I haven't been out and about. I've been in my bed most of the day all day each day. The oil makes me out of it but if I don't take the oil then the nausea, swelling and pain are unbearable. I wish I could figure out how to motivate myself to go for a walk outside in fresh air. I just don't know how long I could do it for. I suppose that's what I need to find out. Walk a little each day. Do what I can do!!!

Decisions, decisions….

I'm at a crossroads right now. I'm waiting to talk to Dr. Friedman about the Y90 procedure, risks, and scheduling. I met with Dr. Monica Mita at Cedars yesterday, a referral from Dr. McAndrew for access into clinical trials at Cedars.  After waiting an hour and having a routine physical, which I find really odd since I was just suppose to speak with her about trials, Dr. Mita checked my medical history plus the gene mutation analysis from MD Anderson. Right away she told me that she had a trial for me to participate in. The trial is Phase 1 (part 2) - daily intermittent for determining the most effective dosing of the drug in patients. The FGFR inhibitor is a tyrosine kinase inhibitors. People in the industry are very excited by these inhibitor. After I first met with Dr. Moulder at MD Anderson she was most excited if I could get into one of the PARP inhibitor trials but it turns out that I wasn't BART positive or have the specific genetic mutation to be eligible. It turned out two years later, according to Dr. Moulder, that the later results were not as promising as the initial results so the trials stopped. The biggest risk factor in participating in a trial is disease progression and lost time. I'd hate to consent to the trial, participate for 6 months and then have disease progression and no longer be eligible for the Y90 procedure. This is my biggest fear about entering the trial. The reward could far out way the risk if the trial drug actually worked for me….

• A tyrosine-kinase inhibitor (TKI) is a pharmaceutical drug that inhibits tyrosine kinases. Tyrosine kinases are enzymes responsible for the activation of many proteins by signal transduction cascades. The proteins are activated by adding a phosphate group to the protein (phosphorylation). TKIs are typically used as anti-cancer drugs.
• They are also called tyrphostins, the short name for “tyrosine phosphorylation inhibitor”, originally coined in a 1988 publication,[1] which was the first description of compounds inhibiting the catalytic activity of the epidermal growth factor receptor (EGFR).
• The 1988 study was the first demonstration of a systematic search and discovery of small molecular weight inhibitors of tyrosine phosphorylation, which do not inhibit protein kinases that phosphorylate serine or threonine residues and can discriminate between the kinase domains of the EGFR and that of the insulin receptor. It was further shown that in spite of the conservation of the tyrosine-kinase domains one can design and synthesize tyrphostins that discriminate between even closely related protein tyrosine kinases such as EGFR and its close relative HER2.

It sounds very promising but for some reason I am not too excited about it. I'm nervous. I have a hard time lately getting excited about anything. I've had my hopes crushed far too many times lately. It's not the best way to be spending my mental time feeling sorry for myself but it's hard not to when the physical body isn't feeling well. I feel like I'm on borrowed time in so many ways. I'm having sharp and dull/achey bone pain, but the sharp pain in less frequent now, and a swollen abdomen which is the most challenging. The swollen liver is putting pressure on the rest of my organs and I can't tell if it is that fact alone or lasting side effects of the chemo that are causing major nausea and lack of appetite. I'm nauseous if I eat or if I don't unless I'm on a major dose of the hemp oil. I told Dr. McAndrew that I have no quality of life on this cargo/gem treatment and if it isn't working then please get me off and move onto something better. Onward and upward.

Last week I had a PET scan (insurance wouldn't cover the CT part, AGAIN, but McAndrew felt it still gives us an accurate representation of what is going on. So we have the liver MRI the week before that showed stability. Well, I should hope so since it was only ONE month since the last liver MRI. The second was the PET last Monday. The bone scan was on Friday. In between appointments I would sleep mostly. Lots of sleeping lately. On the one hand I feel like my body really needs the rest but the internal conflict I have with the guilt of not exercising or at least walking daily is starting to get to me. Walking is supposed to strengthen your bones. I was told to walk 2 miles a day. That would be ideal. I'll get there. I forgive myself for not walking lately. Today is a new day and I can take a walk any time on this beautiful day. I'm in a better mind set now to get out of this physical funk. If walking is all I can do then that is all I need to do.

This leads me to something that has been bothering me lately. It's so easy to judge others. The President and CEO of the Susan G. Komen Foundation wrote a wonderful article called the "Metastatic Breast Cancer Conversation" in which she describes the challenges facing those with metastatic disease.

• Since there is no cure, we are always in treatment
• "Scan, treat, repeat"
• Metastatic breast cancer causes the majority of the 40,000 breast cancer deaths annually in the United States. The five-year relative survival rate for metastatic disease is only 24%.
• "Those who suggest that maybe these patients aren't "fighting hard enough" or didn't do something to prevent their disease."

The last point really doesn't sit well with me. It's easy for a healthy person to pass judgement or be critical of a sick person. It's easy for other sick people, who aren't as sick, to pass judgement or be critical of another sick person too. But we all have a different path. We each have our own journey. I remember being critical of Martha, my stage IV friend who died a few months ago. She kept saying she didn't have time to exercise but would instead grab a few beers and watch a game with friends. There are two ways to look at it. Shouldn't she have been drinking green juice and walking two miles a day after teaching all day on her feet? Should my other friend Annie, who passed away last month from Stage IV not have had a glass of wine with dinner or enjoy a BLT with actual bacon?  You can't understand a person until you've walked a mile in their shoes, right? This is a also a quality of life issue. Do all cancer patients need to become vegan, gluten-free, sugar-free supplement taking, acupuncture, yoga and meditation loving clones during treatment? Or should we be doing the things we love since we don't know how much time we have left? As for living on borrowed time, I'd hate to go through everything I am going through (and then some) to lose my fight while not enjoying a good quality of life. Can I find that healthy balance of eating healthy and allowing myself some well deserved treats now and then? If you see us start to slip on our diet, drink a glass of wine, skip a walk to spend time with friends and family then please don't pass judgement that we aren't "fighting hard enough".  I heard a man at a dinner part tell me that a mutual friend who fought and lost her battle with stomach cancer "just gave up, she simply stopped trying…" I don't think the mother, who was a mother to three young children stopped trying, she didn't throw in the towel or give up. She resigned herself to her latest condition and left the earth having made her OWN choices and tried HER best. Sometimes we need a break.  Even soldiers get breaks.  Stave IV metastatic patients don't get a break. 

My yoga teacher was telling me that I looked like I just needed to get away, recharge the battery and have a break. She was the one who explained to me about how soldiers aren't allowed to stay in the battle field for too long at any one time. Their posts can be 6-9 months but usually no longer or they can literally go crazy depending on the field conditions. The day before she told me this I had watched the film 12 Years A Slave, I was of course sobbing like a baby. I thought how could people treat other human beings this way?! Well, the answers are most likely ignorance and lack of empathy but I couldn't stop thinking about Solomon Northrup. It's one thing to grow up as a slave and not know anything but these horrible conditions, to grow up free in New York and be smart and talented and then thrown into slavery. I made the terrible analogy that it describes so much how I feel at times being stage IV. To be young, healthy, and in my prime as a mother and then have it take away from me by cancer. I am a slave to this disease. I don't know if I'll ever be cured but so far I'm living on borrowed time as I jump from treatment to treatment.  Cancer is a cruel, hard master who keeps you scared and anxious. If I continue on like this my kids will only know and remember a mother who wasn't often around, who was always at the doctor or hospital, who slept a lot, who "didn't feel well" most of the time, who couldn't help facilitate play dates, park and museum trips, and take them on adventures. I've become this shell of a person operating at a minimal level of activity. That really sucks. 

This week I'll do more research about the trial, a spot is being held for me. I'll hear from Dr. Friedman on his thoughts for the Y90 radio-embolization procedure. I see Dr. McAndrew on Friday. I've emailed Dr. Moulder in Houston at MD Anderson to see if I can move up my appointment with her instead of waiting until 7/29. Perhaps they have some trials too. The thing that scares me about all of this is that I wish I could look into a crystal ball and figure out which path has the least side effects, less toxicity and is going to be the most beneficial killing the tumors. It is a wonderful thing, yes, to have these two options. Perhaps the choice will come down to the lesser of two evils.

The hemp oil has been very good for me. I'm off the zofram for nausea, off the tramadol for pain, off tylenol for pain, and no meds for constipation either. I'm figuring out how to best dose it so that I can still be a functional human being. The dosing is biggest at night when I am sleeping. Then I take a break during the day, unless I'm in pain or nauseous then I have the high CBD (low THC) tincture. The tincture does not give you a buzz or make you feel stoned. What has been difficult about the dosing and the ramping up is that I've noticed that the oil when put into a cellulose pill takes about 3-4 hours to really kick in (for the peak) then it goes back down pretty quickly. I'm still working on it but I'm sure that if I have the Y90 or consent to the trial that I will have to stop the hemp oil. (I think)…

I really hope everyone is enjoying their summer. I can't wait to get some answers and a plan in check so that we can take a long family vacation. We wanted to go away the month of August but if I do the trial  then I won't be able to go for sure. Not sure what it would mean if I did the Y90 procedure instead…

I need to make some very important decisions but I also can't make then in a vacuum. I need more information, more research and more discourse with my physicians. H E L P. Where's that crystal ball?

And she was all like "meh" and I was all like "yeah, meh, too"!!

I haven't posted in some time. Mostly it's because I haven't had the energy. I've been sleeping a lot more and I don't just mean resting. When I go upstairs to lie down during the day I fall asleep hard and fast. This latest battle with chemo should be filed under the most difficult thus far. My counts are constantly out of whack despite blood transfusions and neupogen shots. I originally was scheduled to have the carboplatin/gemzar combo for three weeks on and one week off. Per my last post, I was only able to do two then the counts tanked and after two weeks off (and two other additional attempts) I was finally able to get chemo the third week. By that time however, my tumor markers started rising again slightly.

Tumor markers continued to rise so I had to repeat the Liver MRI even though it's only been ONE month since my last one. That is a sign of the times. Everything is done with a tad more urgency and seriousness. Headache? Let's get a brain MRI. Bone pain? Let's repeat your bone scan, you haven't had one of those is six months. Constipated? Let's x-ray the abdomen and check for blockage. Got a scratch? Let's call in a script for bactroban and some antibiotics. Nausea? Let's push some IV anti-nausea meds. I still refuse most things when I can. I already have all this poison running through my system so I'd like to be as natural as possible any where else.

What have the side effects been from this current treatment? Other than being very tired and low energy I am constantly nauseous and/or constipated. The inability to rely on any true chemo schedule has made fasting impossible. The new schedule of one week on/one week off also hasn't worked.  After the third treatment and two weeks off I wasn't able to have chemo that week and had to have it pushed to this past week. I was finally able to get the fourth treatment on Wednesday June 25th. How is that for an erratic schedule? So if I had fasted last week then it would have been for naught. And I can't be expected to fast every week, right? I've decided to put fasting on hold until I can get to some kind of consistent schedule. I still fully believe in the benefits of fasting. When I get time I will post the fasting schedule and regimen of what I did since several people have asked me for it.

I have also been experiencing major bone pain in my legs, hips, shoulders and back. Some of that is attributed to my infrequent and inconsistent work outs that I try to do whenever I get a spurt of energy. I made it to ballet two Saturdays ago and my body paid for it for over a week. I think that pain is a result of being out of shape, wanting to do something my body probably shouldn't, and pushing myself because I feel, on some level, that I should try to battle through this like an athlete. You know, like Lance Armstrong in his book "it's not about the bike" - yeah, apparently it was about blood doping. Anyway, the things I know my body likes and doesn't react badly to are yoga, walking, and swimming.  As is often said, it's best to "listen to my body" but darn it I love ballet so much more and wish I could dance. I wish I could be stronger like I used to be in these classes. I'm almost able to releve on my right ankle that I sprained back at the end of March. I'm so close but so far. It's just beyond my reach…and mentally that really hurts. It's a little bit of spiritual anguish too.

At some point in life, most adults come to a point where changing or shifting just isn't possible. We don't start out that way. I'm  talking about how right out of college you think you could conquer the world, then a few years later still have the ability to change your career or pursue something untraditional. At a certain age or a certain shift in your life perspective you realize you can't just change things on a whim. That is a sad day. Before I was diagnosed I kept thinking about getting back to work and doing something that I loved to do when the kids were school age. Abby starts kindergarten in the fall and my job has become that of a cancer patient. I am working so hard to get well and stay well. Some days I feel like I could go back to school and pursue medicine. Except it's not my passion. This new hobby is out of necessity. To be my own advocate. I'm still researching new treatments, trying to meet with new doctors and explore different options. I'm going twice a week to acupuncture. I'm going twice a week to physical therapy - split between my ankle, the cording in my right arm from the port and the tightening of the soft tissue and muscle post-mastectomy and radiation that is pulling on the left implant. I'm constantly doing something to try to make myself stronger, more agile, more normal, more….ME, back in the old days. It's a real bummer when you wake up in the morning and you don't recognize yourself. When you walk up the stairs to grab something quickly that you forgot and need to stop half way from being too winded. HOW DID THAT HAPPEN? When did I get so out of shape? How do I stop my health from slipping away?

My girlfriend Stefanie has stabilized and potentially shrunk away the cancer from her third metastatic recurrence using help oil. Hemp oil is cannibis oil. Marijuana, you dig? This is an area where I haven't done enough research. However, I did try it in the past to help me sleep. It's not like ambien knock-you-out, it's more like knock-you-out-and-if-you-wake-up-to-pee-in-the-middle-of-the-night-well-GOOD-LUCK-walking-to-the-toilet-while-seeing-stars-through-closed-eyelids OUT. Stefanie has been having great results and is becoming a huge advocate to the cause and has been suggesting (gently) that I get on the program. The catch is that people in the "industry" recommend that you not be on any traditional treatments while dosing the hemp oil. It takes your body quite some time to build up to the recommended dose of 1 gram per day. I asked Philomena about this and her immediate answer was "no way - that someone who has it in soft tissue vs. internal organs is a completely different scenario". That being said, I'm wondering what is the harm in doing the help oil AND the treatment? So I started doing a little bit of research in that regard. There of tons of women and men on various cancer message boards having the same conversation. There is more of more news reports of adults and children being treated and cured using cannibis oil. They are even making non-THC (non-hallucinogenic) edibles for children that is being used at major children's hospitals around the country.

Last time we were in Hawaii for spring break we looked at buying a condo as a dedicated second home for our family. There is something incredibly healing and relaxing about the Big Island. After losing out on a unit over spring break we were able to buy a similar unit from some friends that were upgrading to a house. David has worked diligently over the past few weeks making this happen for our family. It is such a blessing for us. David has been asking when we can go check out the place…and I haven't been able to commit to a time because of the chemo schedule. We took a leap of faith and booked some tickets last week after chemo was cancelled. It worked out fine since it was chemo Wednesday and leave for adult vacation the next day. Four days of recharging the battery. Who could ask for more? I slept all day Thursday and Friday but had no guilt that I wasn't taking Abby to camp or responding to whining or crying from downstairs...

I also decided to take Stefanie's advice and load up on the hemp oil and tinctures so that I could start in Hawaii when I had nothing else I had to do. My general excuse is how can I do this and be "on" as a mom? The trick to this hemp oil is to ramp up to 1G a day. If, at night, when I have a capsule with hemp oil the size of a grain of rice (1G is about 25 grains of rice) and I am out for the count how could I possibly function? I have become an official medical cannibis user. I am learning all about cannibis and it's medicinal properties plus a whole new lingo - saliva vs. indica, medicinal vs. recreational, THC vs. CBD, hybrids, edibles vs. smoking, etc. etc. If you had asked me years ago whether I would ever 1) be taking, doing, having marijuana in any form and 2) speaking about it publicly - the answer would have been a resounding NO. I grew up watching my parents smoke cigarettes and MJ and became a crusader against tobacco and marijuana. It's the gateway drug. Ooooooooh. Is it really? Why if there are  medicinal properties in this plant is there such a negative stigma? Is no one making enough money off of it for it to become a viable industry? We need more research. We need more answers.

Here is what I have experienced on the hemp oil thus far - I am relaxed. It helped me sleep after the first two days of chemo straight all day and night (except for meals) and by the third day I felt GOOD. I'm NOT in any kind of pain. It feels very nice. I feel mellow. The things that I don't enjoy about my type A personality are very turned OFF by the hemp oil. For instance wanting to run out and buy everything we needed for the condo on the first day so we had things for the first morning was just a non issue. I was just like "meh"! And traveling on the airplane here and hearing screaming kids yelling "Mom" and "Mommy" normally keeps me on edge and I was just like "meh"!!! I can totally see how this oil is going to benefit me back home. I need to have more of the "meh" attitude about everything other than my kids, my family and my health. I need to let the "little" things that end up occupying so much of my time, energy and consciousness just slide away. I bet my kids will love the new mommy that lays on the floor to play magna-tiles all day and have snacks with them and says "meh" to everything else.  I love feeling relaxed, non-stressed and unfussed. I am liking the new "meh" me. She's not in pain, she takes things slow, she doesn't blurt out stupid things, she just hangs back and enjoys life. I even did water aerobics this morning and will go for a walk later. It's not debilitating. I am able to function much better than I thought I would. Well, I suppose that's how I feel, my friends and family will be sure to tell me whether or not I'm functioning well or not. I'm also going to be tracking my progress, blood counts, etc at Tower to make sure that this doesn't negatively impact anything. All precautions are being taken!!

Aloha!!

Good to go!

The good news is my platelets are at 122. So I'm clear to have the treatment. The bad news is that my hemoglobin is way down so I need a blood transfusion. They want me to get 2 units. I have an "already cancelled once", "very belated" birthday lunch on Friday that I'm trying not to cancel it again. It means that I will have the infusion today, then one unit of blood this afternoon and then one unit of blood tomorrow morning to be done by lunch. I'm told that the blood will make me feel so much better AND it does not effect the efficacy of the chemotherapy.  I welcome anything that will make me feel better.

I also cannot wait to eat tomorrow and break my fast. The woman in the chair next to me ordered some deli and I can smell the food wafting over here….Yum.  I'm hoping that this gnarly fast, it was very hard this time because of the super restricted calories, makes me have less nausea and no vomiting like the last infusion. I created a "juicing" station at home that I can't wait to start using so I can start juicing fresh veggie juice myself. Apparently, I also should be eating some red meat. But I know I can try with spinach and other iron hearty foods too. I'm excited to drink my almond milk from the "mylkman" and my "beautiful cereal" from Dr. Mao. I'm finding that I'm craving healthy food and will keep that up.

HUNGRY.
NOM. NOM. NOM.

Have a great weekend!!

Attempt #3 Thursday

I'm still in digging deep mode, staying motivated to get this next infusion. I've had two failed attempts last week. I went to acupuncture to help with my platelets. Monday - platelets were 69 then on Friday they were 56...oops, WRONG direction. I'm trying again this Thursday. The neupogen shot did bring up my white counts but the platelets need to be at least 90. Fingers crossed.

I'm fasting this week. I started yesterday. I'm not doing the L-Nutra fast. I'm actually doing the protocol from the actual NCI study which is a starvation study. 2 days before chemo, day of chemo, and 1 day after. I can't have more than 200 calories. Yesterday I didn't make it. I had two cups of vegan soup, one at lunch and one at dinner which were 75 calories. Then I was way too hungry at bedtime to even think of falling asleep so I had 10 almonds, which is about 100 calories.  I'm hoping the rest of the week will be easier!!

The protocol for the infusions are changing as well. Dr. McAndrew is switching me to one week on and one week off in hopes that my blood counts can recover and we don't have to delay treatment. I will be getting another PET/CT or liver MRI (ugh) at the end of two months of treatment, NOT after 6 infusions like I previously thought, due to the delays in treatment. She wants to stay on top of the progression and make sure this is going away. The good news is my tumor markers are indicating that they are working. The bad news, other than how I feel and my damn blood counts, is that the liver mapping procedure doubled my tumor markers. All the banging and shoving and resulting inflammation jumped the CA 15-3 from 772 to 1280 (normal range is 0-42.0!!!) and the CEA from 377 to 624 (normal range is 0-5.0). This needs to get under control. It is totally unacceptable in my mind. I'm fasting and I'm going to get my infusion on Thursday. Goodbye tumors. You suck.

Work B*tch...

I'm feeling better. I'm exhausted still but mentally a little better. I stopped listening to that song that makes me cry to *cough* Brittany Spears, particularly the song "Work B*tch"... You have to want it. And I WANT it. So I better work. Get motivated. Dig deep. 

Went for my infusion this morning at Tower. I got hooked up and they took my blood for counts, markers and chemistry. And unfortunately my white count and platelets came back far too low to have an infusion. I was even wearing my new Ganesh necklace from Patti!! I should say that I'm not surprised about the counts because it would explain why I've been feeling like cr*p, but I was still totally surprised. Duh. Anyway, they gave me a neupogen shot and I'm going back on Friday in hopes that my bone marrow works overtime to bump my counts back up to acceptable levels. More resting for me (just hoping no bone pain from shot)...

Thank you everyone for your emails, texts, calls and well wishes. I sure do feel loved and supported!!

What's your favorite "get pumped" song? I need to create a new playlist...!! 

Love,

Jess

Ugh

I'm having a really rough time. This sucks. I'm lying in bed all the time. I'm nauseous all the time and have to take the zofran. I also have to take mineral oil, miralax and stool softeners daily. My GI system is like what the heck?! I'm hungry but I'm not. I eat but feel sick. I'm constantly uncomfortable. That's all when I'm awake. I only get spurts of energy then I better drag my *ss back to bed. Not even watch TV and relax in bed, more like passed out cold, drooling on my pillow and waking up in a fog. It's really depressing. I'm fighting hard mentally and spiritually. I need to get through this but I feel so beat up and defeated. I assume I feel this way because it is working. But I'm not buying any of my normal internal pep talks, be happy, snap out of it bullshit. I'm just coping. The hardest part is I don't see an end in sight. Where's the light at the end of the tunnel that says "just two months of this and then you'll be done"? Or "One more month and you'll be able to recover and get strong again"...No one is telling me that... F*ck cancer.

I feel like the Calvin Harris/Florence + the Machine song "Sweet Nothing" (again, in case I blogged it already)...

There is a hollow in me now
So I put my faith in something unknown
I'm living on such sweet nothing
But I'm trying to hope with nothing to hold
I'm living on such sweet nothing
And it's hard to learn
And it's hard to love
When you're giving me such sweet nothing
Sweet nothing, sweet nothing
You're giving me such sweet nothing

Well, let's be honest...

I'm scared for tomorrow but I'm know I'm going to get through this. The amount of love, support, advice, guidance and encouragement I have received lately is making me feel that I CAN DO THIS.

I completed the Walk with Love on Sunday and it was a truly AMAZING day. It was very special to me. First I went to get some balloons for the kids' water table and the florist and I start chatting - I paid for one bunch of balloons and left with two (her mom is Stage 2 about to finish chemo and I was telling her my story). My core team of walkers on my team were David B. Sue B., Lee Jay B. Trish B Denise D. and Courtney J. THANK YOU GUYS SO MUCH! (I'm sorry about the team name Wonder Women since obviously it wasn't all women…I'll need a new name for next year).  I wasn't sure I would be able to do the whole walk but I showed up at the start line and people I really care about just started popping up to walk with me as surprise registered team members - Jen A., Gina C. Maggie C. Matt C. with their two kids, Blake J. Mary and Sarah K... And if that wasn't enough to fill my cup, it certainly runneth'd [sic] over when I saw the kids set up their little lemonade/water/cookie stop in front of our house, full of pink decorations and balloons AND my neighbors painted the most beautiful "GO JESS" sign that brought me to tears. I can't tell you how wonderful it was for me. Walking to raise over $230,000 for the Susan Love Foundation to stop breast cancer. Our team "Wonder Women" raised over $21,000!!!! The best part of the walk was walking up to our house and seeing all the kids hard at work, having fun, passing out their beverages. After the walk was over I came home and laid down to rest. Then I cried. I just start boo hoo'ing and couldn't stop. Happy, warm, thankful tears for my friends and family.  I am so grateful to EVERYONE who donated to our team and who participated in the walk. I also want to sincerely thank my mom and Elizabeth who were behind the scenes with the kids fetching pitchers and pitchers of water and lemonade all morning. Love you Mom. This was one of those special "life moments" for me. I was very emotional. What a big cry baby, huh, all darn day? I know. THANK YOU!!

Yes, I CAN DO THIS tomorrow. Today was a good day. My first good day in over a week since the infusion. I'm hoping that it makes the infusion tomorrow that much easier. I'm getting recovered from the angio/mapping, the first (horrible) round last Wednesday, the liver MRI, and I hate to tell you but a serious case of bowel impaction after Sunday's Walk with Love. I really couldn't tell you which part was worse (the BM issue or the leg pain the night of the infusion are a close tie) but the important thing is that I made it through the HELL of the past week. Over and done!! Stay strong Jess. You can do it!

I felt very good today. I went to acupuncture and had one of those amazing floating down the river experiences. I was able to wake up this morning with the kids and have them both in the bed with me watching Team Umizoomi and cuddling on me, one on each arm. THE BEST. I was able to hold my own at the New Parent Party for Abby's new school in the Fall. I'm not eating but I don't care really. I didn't eat anything at all Monday until a cup of cauliflower soup at dinner. Today I'm feeling the hunger pains but I'm also thankful to not put anything in my GI tract. Ugh. I suppose you could say the timing worked out great… The food at the party smelled divine… Just remember, smells are ZERO calories. It's nice to smell delicious foods and plan what I will be eating for the next two weeks until the second cycle of the infusion starts and I go back to correct fasting one week on/one week off.

I have a very crass sense of humor…my husband generally doesn't appreciate it. I suppose most people don't like fart and poo jokes though! But if you loved the link I sent you about the Haribo sugar free gummy bears, you will appreciate these next two slides from a page I discovered Sunday night (or Monday AM) while in excruciating pain trying to figure out what the heck was wrong with me.  I came across this page (at the end of post) and was crying laughing and yelling "is this for real?" "this is hysterical"!! I'm not saying this is what was wrong with me by the way. See "rousseau"'s answer and the part about the hurricane or "is it a bar stool?" or "bbq tongs!"…O.M.G.

Taro Gomi instructs our toddlers through his book "Everyone Poops" that it's a natural process. We all do it. He should also write a book called "Sometimes you don't poop…and that HURTS"…So yes, everyone does it. No one likes to talk about it though. Except if you're under 10 and over 60. Anyway, get over it! Everyone Poops. I sat around Tower Oncology on Monday after an abdomen x-ray, yep, an x-ray for poop to make sure there were no obstructions. The colon was just completed impacted, all the way, no obstructions, thankfully. BUT (no put intended)...they basically told me that I was "FOS" - as in, "full of shit" and then Mary Lou says "We're all just sitting around here…talking shit" No big deal. Anyway, I will tell you that should you ever suffer from impaction this is what was recommended and worked. The cause, by the way: chemo and pain meds. Nothing to do with diet. The cure - magnesium citrate drinks (given to people before a colonoscopy), mineral oil, lidocaine, and/or glycerin suppositories.

Happy pooping everyone!!!

A few updates

I'm starting to come out of my coma from the new chemo regimen on Wednesday. They so did not prepare me for this round. Or perhaps it was just that my body is so weak from recovering from the Angio, the Abraxane, the sprained ankle, the PT from the left breast, etc, etc, that the side effects are hitting me stronger than usual. I have been sleeping non-stop since Wednesday. That early morning, painful wake up call threw me off but I've been working with my RN Paige on relief. The next night, since I couldn't pick up my Rx, I took half a vicodin and an ativan. I am not a pill pusher. I can't stand taking pills. I was desperate for relief. That combo seriously knocked me out. Normally, when I rest after chemo I will watch a TV show while eating lunch or surf the iPad but I haven't been able to keep my eyes open at all. For real. Now I'm able to take Tramadol for the pain and went back to my melatonin for sleep. The serious pain meds give me hangover headaches and make me super nauseous so I have to take zofram to eat. Ugh. I just want off all this stuff. STAT. 

I was immediately reminded of Jim Carrey in Liar Liar. Seriously, this is how I feel. "I'm kicking my ass…do you mind"?!?! 

I had the liver MRI Thursday evening. More poking for an IV because they couldn't use my port. I used my "off limits" left arm but my right side is pretty cooked. Very odd time for an MRI but I digress. It wasn't my favorite MRI so far, brain and breast were easier. The liver MRI requires lots of breathing in and holding your breath. To top it off, at one point, the tech forgot to tell me that I could breath again so I had to press my call button and remind him to tell me that it was OK to breathe!! WTH. I'm so glad that's over...

Friday, I met with Philomena. The procedure is out. As I see it, nothing was a waste. The Angio revealed important live saving information before it was too late. I'm grateful for that. Right now, the only thing I can do is systemic treatment, we're going with the Carboplatin/Gemzar combo. On my stage IV breastcancer.com discussion boards my liver mets sisters have had good success on this combo for knocking the liver mets out of the park. That is my plan too.

This was the first time I've felt Philomena be glum at an appointment. She said it's not grim but she said "yes, things are progressing and we need to stop it;" I still have a lot of chemo regimens available to try but she sees this a lot with her younger patients. Cancer is more aggressive. She said she wants me to meet with the researcher at Cedars who handles the Phase 1 trials. She has a patient the same age as me who had tried even more chemo regimens without success and then went in a phase 1 trial that has kept it stable for 9 months. When I hear things like that I think, awesome. But what I also hear is "9 months" like that is some kind of prize. I want this f-ing cancer gone and I want to be NED in 2014. Universe please make this happen. This process right now is really difficult. I am losing faith. I think this is because I feel so bad physically. I can't wait to get back up some energy and get back to walking, ballet and yoga. I know I need to keep my body physically happy so I can be mentally happy too.

Tomorrow is the Susan Love "Walk with Love" walk here in my neighborhood. I am going to walk, I will listen to my body but with each breath and each step forward I am going to appreciate that I am alive and fighting to live. I will appreciate that I am a warrior. I will appreciate the warm day, the breeze through the trees, the love and support of my family and friends, and the community in which I live.

I breathe in peace and I exhale gratitude. Prana.

Love,
Jess

Ockham's Razor

Sometimes the simplest answer is the right one. It is challenging when you are a cancer patient to always go to the simplest theory. Some days everything feels like it is related to cancer (or dying). 

Here's what I now get that I was trying to understand before about death and dying. I lost a friend, Debbie, to pancreatic cancer recently. She was a mom to two young girls, four and eight. Fuck cancer!!! After losing my friend Martha the month before this threw me for another loop. A mutual friend of Debbie and mine was with her at the end. When I was finally able to talk about it and ask her how it was in the end she told me that the hospice care was beautiful and that Debbie was really ready and happy to go. This is something so painful for me to understand. If she had her choice she'd be walking around healthy as a wife and mother to those two amazing girls. Here's what I finally understand: when you are in so much pain and so debilitated that you are unable to care for yourself at even the most basic level, you want to stop your suffering. You also want to stop the anguish of those close to you. Your hope shifts from yourself to a life in the beyond full of fantasy, peace and love and to the bright and merry future for those you love and care for. You know that life will go on without you, that time heals most wounds, (I won't say all since I still miss Bennett terribly at times), and that your loved ones can thrive again. Debbie worked with and her family is still working with a Transitionalist to make the process easier. I know this time is very difficult for them. I also know they can come through it and find a new kind of normal with the memory of their beautiful and loving Debbie in their hearts. I am so sad for them right now. 

I am also sad that the veil has been lifted from my eyes and I now better understand this process. I am grateful that there can be a process and a timeline for some who can "get their affairs in order". At the same time I am disappointed that there isn't a process or timeline for others who are taken suddenly and without warning. 

What I have also come to understand is that you can't make decisions when you are in pain. You aren't in the right mental state. I say this to many people I meet who are recently diagnosed with cancer or other life-threatening illnesses...get the pain under control first.

I literally thought for the past three days that things were not going my way. My faith and hope was wavering. Not just in the usual seesaw, teeter totter way that I know I can bounce back from.  The Angio/mapping was way more than I was prepared for. The procedure was traumatic for my body that was already weak. I slept all the time as time allowed. I battled intense UTI symptoms from the catheter; a swollen, bruised and painful groin area from the incision which inhibited my mobility; and more ankle pain from not being prepped and supported properly during the procedure. Thankfully the sore throat went away relatively quickly! The worst part was on Sunday I started having very bad stomach pain, my abdomen was swollen and bloated.  Whether I ate or didn't eat I felt really uncomfortable and doubled over in pain. I kept thinking it was my liver. Fast-forward two days later to dinner and my friend Jeanne reminds me of c-section recovery and all the gas and bloating. She asked if I've tried Gas-X? Why no, no I haven't tried Gas-X. I ran out to get some and have been eating it ever since. I feel so much better! They must have pumped me full of air since I had a breathing tube and so they could fill the lungs to better see the liver. Ockham's razor - it's probably gas! After gas-x like candy and more rest my head was in a much better place to battle the next step in Agent Oso's plan: infusion day!

Here's what I got through yesterday:

1) Anxiety

2) Walking down the street to get a tea to kill time while blood work and chemistry were analyzed with David in 100 degree heat, port accessed and wrapped, wearing sandals and not having walked in over a week. 

3) Carboplatin skin test - like a TB skin test to check for allergic reaction but with a burning chemotherapy agent injected just under your skin.

4) More anxious waiting - I've already had carboplatin the first go-round for six infusions so now they have to test me each time for a possible allergic reaction before we can proceed.

5) Infusion was a GO!

6) 10 minutes later intense Charlie horse cramps in both feet but primarily the right. That poor right leg - terribly bruised and healing from the groin incision and procedure, ankle still a mess, and walking in stupid sandles for 20 minutes as the first exercise since Angio. I used to get these terrible cramps all the time but ballet really got rid of them. I really, truly miss ballet and need to get back...

7) Infusions (Carboplatin them Gemzar with a side of Dex steroid, kytril and hydration) were no problem - just very tired, you know the heated tired behind the eyes kind I've referred to in the past.

8) Made it just in time to pick up Abby from school, David racing in his tesla (which has strong G-Force so I almost lost my lunch a few times...love you Honey).

Fell asleep at a reasonable time tonight but woke up at 2:45 with terrible leg pain. I laid here in agony for 15 minutes and couldn't figure out what to do... Should I call the nurse? Then, in my groggy stupor, I thought about Ockham's razor, the Gas-X and fixing the problem myself.

Think, Jessica, Think!!

1) Tylenol for pain

2) Massage the leg - Wow, huge knots in shins and calf. I had no idea.

3) Pressure point release - good kind of pain

4) Heat pad

5) Now I'm wide awake fighting urge to watch TV...and it's been an hour and a half so now I'm hungry too. So here I am typing this blog entry, which is probably just as bad but I still can't go back to sleep. 

Notes to self:

1) No more walking in non-supportive shoes

2) Make PT session tomorrow before MRI about my ankle and plantar fasciitis instead of the capsular contracture in the left breast.

3) Up melatonin to 5 per night while not fasting. FYI - melatonin is not a sleep aid it is to strengthen your innate immune system according to Dr. Conklin.

4) No more cell phone at night either if can't sleep. Ask what I can take as a sleep aid during treatment.

5) Blog entry on Dr. Conklins supplement regimen and schedule. 

Good morning!! It's 5:30AM. Now the F-ing sprinklers are cycling and birds are chirping. I can't get back to sleep. Time to sign off. Thanks for listening. Thank you for being here with me.

A huge thank you to Debbie K. for the surprise visit complete with gorgeous  peonies, a rose quartz Ganesh (Jai Ganesh!!) and other wonderful gifts. And a heart felt thank you to Patti and Howard W. for a special box that arrived when I got home from the infusion today with a bracelet and necklace of Ganesh. (Jai, Jai Ganesh!!). The three of you lifted my spirits this week when I was really struggling!! Thank you. You people are just so crazy!! Crazy thoughtful. 

Sending my love to all!

Night night.

Home now playing chess...

Teach Me to Play Chess 

5:15 wake up
Throw Mom in the car
Racing to Cedars
Pit in stomach growing
Anxiety masked as hunger
Or possibly both
Checking in
Advanced directives
Signing my life away
Cutest elderly couple telling jokes
Happy David Lynch style
"If everything is coming your way, move, you're in the wrong lane"
Sharing the laughter
Tinged with jealousy
Taken in groups up to prepare
Icy cold stalls
Naked in gowns
Warm hospital blankets
The only civilized thing
Checks, doubles and triples
Paperwork and Data Entry
I'm so parched
Patiently waiting
Hierarchy is apparent
Doctors among gods
You can tell who's the best
R E S P E C T  and A W E
Spinal surgeon walking on air
Too be that important
A mortal god with healing hands
Regrets from not pursuing more
Could that have ever been me?

Transport to OR

Down a long creepy hall

Where is everyone?

New Sterile Room

Specialized Techs for expensive machines

Nurses with nicer jewelry

Anesthesiologist with a 9 month old

Wait, I need a breathing tube for this?

Instant dread, "only a sore throat"...
Checking for pulse spots
Why on my feet?
Access my port and dressing it up
Doing the OR prep dance
My Deity of a Doctor arrives
Everything's all set
Saw good news on the scans he says
A wish in my head
Skip the whole blasted thing?
Mom says goodbye
So thankful she's here
Everything suddenly set to warp speed
Listening through a ringing filter
Did you give me something?
"Oh, most people don't feel that"
Oxygen and two more minutes
Deep breaths
Think of happy dreams
Family playing on the beach
Perfect sunny day
Laughter and delight
Innocence and freedom

Procedure went well?
Waiting for shunt results
Bed rest for three hours
Urinate in a bed pan?
Wished to sleep more
Crabby old man needs interpreter
Screaming at nurses
Irate blood pressure warnings
Shouts "medicine" and "access"
Two hours can feel like a lifetime
Shhhhhhhhhhhhhh I say
Goodbye and so long!
Peace and quiet
Drinking icy cold water
Throat really hurts

Doctor came to talk
There are some issues
Angiogram better than scans
Much more disease than previously thought
10-12 lesions, seem to be dying
Scans aren't picking it up
You should get MRIs of liver
Scans are not accurate
Small lesions throughout the tissue
Too many lesions can complicate liver function
Changes procedure landscape
Barely a candidate
Liver may not tolerate spheres
Can it continue normal bodily functions if completely suppressed?
Liver function and Billirubin tests
Philomena will call to change your chemo
I'm not wanting to hear this
We opened up a spot for the procedure
If we move forward on May 21st.
See what Philomena says

I'm reeling.
Did I just hear that...
Almost a goner?
I only have one liver
The nurse says, No...
Breast cancer most researched
Plenty more chemotherapy agents
Should you not proceed with spheres
Meaning: no longer be eligible

I'm resting at home now.
Throat getting worse
Tea, Water, Applesauce, Acai bowl
Reeling from the news
Advanced liver disease
Vampire lesions sucking my blood
He says start on right over left lobe
But left had larger lesions.
Tumor markers weren't lying
They are abandoning the mother ship
Striking out on their own
Multiple small lesions all over
Worse than big main ones

Talked to Philomena
Yes, we are changing chemos
Starting early this week
Scheduling a liver MRI S-T-A-T
Talking to Doctor to postpone
21st too soon, need a month
Need one new chemo cycle
New combo may not lose hair
Good bye cold caps?
Philomena says no need,
Penguin Cold Caps say yes
I think a break is ideal
Now fasting yes, yes, yes.
But not for this week.

Lots of moving pieces
My health is a chess board
I really wish I knew how to play
This checkered board game
That has become my life
Trying to control the strategy
Before a checkmate

All Aboard!! Toot Toot.

First of all, Friday's scans showed stability and even some shrinkage. I don't have the report but both Dr. McAndrew and my RN Paige seemed both surprised and relieved. SO I'M HAPPY!!

Furthermore, after two days of calling and pushing the appeals department at my insurance company they notified me this morning that they are APPROVING the Y90 radio-embolization procedure!!  GOOD NEWS!!

Things are now in a rapid fire process…tomorrow pre-ops and Friday will be the angiogram/mapping procedure. I am told that is an all day process. I don't know the time or any other further details. The RN Becky told me that once the mapping is complete and analyzed then I usually go in for the actual procedure two weeks later! Not sure if that means I continue chemo in the meantime or not. More details to come...

SUCK ON THAT LIVER TUMORS.

JAI GANESH!!!
I went to this random "timeless symbols" kiosk in Santa Monica after my therapist yesterday because I saw they had dream catchers and I wanted another one for Abby. She had a random bad dream over the weekend but I digress. They also had beautiful mala beads and I was attracted to the lotus root beads, red coral beads and ebony beads so I ask the woman in the shop what they mean. Then we had a whole conversation on my life and my issues, she wasn't shy and was very direct about her investigation…She said I needed to be vegan again among other pieces of advice I didn't necessarily ask for yet didn't have the energy to politely walk away from; as David calls "the art of the dismount". Anyway, I kept chatting her up because I couldn't dismount but I was also very fascinated with the meanings and symbols. She made me a small necklace on a red string with two pure coral beads, that she said were very important and special. She also gave me a card with the Hindu elephant god - Ganesh and told me to say a mantra of "Jai" (victory) Ganesh (the elephant god). He is the god of success and the remover of obstacles. Coincidence that the next morning I got the call from the insurance company for the approval???
JAI GANESH!!!

BE GONE CANCER. YOU ARE MESSING WITH WONDER WOMAN.

My therapist told me about the coolest study ever. Do you want to be less stressed and more successful?  Reciting positive affirmations aren't the key. You also have to change your body language. If you want to be confident and take charge then take a stance like Wonder Woman. This is no JOKE. It's hysterical but completely legit. Read about it for yourself: Body Language Research Study and then watch Amy Cuddy's 20-minute TED talk.

YOU ARE WELCOME.

Happy Birthday to Me!

Happy Birthday to me.
Happy Birthday to me.
You look like a monkey.
And you smell like one too!

I'm fasting again. I couldn't decide if I wanted to indulge on my birthday or fast for my last session of this chemo cycle. I went with the fast because as my Aunt said to "fast for many more birthdays"…

Last night while lying in bed I started massaging my empty stomach because sometimes the fasting makes the stomach feel like a dried up rock. Sometimes you get cramps. I was only trying to be gentle to my stomach and give it a little rub. The area, however, near my stomach and liver was tender and sore. That did not seem like a good thing. I knew the minute I got here I wanted to see Dr. McAndrew.

Per my last post, our insurance company, in all their wisdom, has denied my request for the Y90 radio-embolization procedure. They say it is investigational and therefore NOT covered under our policy. Anyway…so what does that mean for me? I am still hoping they change their mind and we'll know that by Tuesday at the latest. If I can't get that treatment then another option would be a liver resection and ablation procedure. And/or changing the chemotherapy agent I am receiving at the moment. I have heard good things about the Carboplatin/Gemzar combo in combating liver tumors. Not sure what that means about my bones…we know that my bones have been responding to the Abraxane so will they keep responding on a new cocktail as well? Regardless, you never really want to change to another cocktail because that means that there's one less thing on your treatment tool belt.

The kids watch this show called Agent Oso.  He's a stuffed bear that's a special agent like James Bond. He helps kids do new things, like jumping rope, riding a scooter, using a hula hoop, etc. in three special steps. Then he earns a digital medal for completing his special assignment. David and I refer to this all the time when things are difficult or we know they are going to be rough. Traveling with the kids: Get through airport security - STEP 1!! Make it through the flight - STEP 2!! Get the rental car and get to the hotel - STEP 3!!! And so on. It really helps get through hard stuff. It adds some levity.

I'm sitting here at Tower now. This is the C*RAP that went down today. My regular nurse Mary Lou was out today, sniff sniff. I had a new nurse. I came early and got started with the caps in hopes that I could go home a half hour early. The nurses got out of their morning meeting late… Best laid plans as they say. Anyway, blood counts were fine and we were able to proceed with treatment - but still half an hour later than normal so I'll still be stuck here. Paige, my nurse practitioner came over to check in and asked about last week's reaction to the Abraxane. She added the steroids again for this infusion. The infusion went off without a hitch. (STEP 1!)

Then she told me that I'm due for my lupron and Xgeva shots. (!!!) I'm in constant denial that I need these shots because I always feel like I just got them, and I did..but it was a month ago… Even worse news is my tumor markers have jumped up dramatically in the last two weeks. About 100+ points each time. I'm ticked that they are just telling me this now…shouldn't they be checking for these things during the week for follow-up?! Anyway, this means that the tumors in the left side (or maybe elsewhere) are continuing to grow. With the added tenderness in the liver area they decided to order a CT Chest and Abdomen scan while I'm here. Chest to double check on my port and Abdomen to check on my liver.

The *very* best part about getting scans is that they are at Tower Oncology which is doubly convenient since I'm already here. The bad part is that I need a contrast and they either need to take out the huber needle I use for the infusion and insert another LARGER huber needle for the contrast or they have to start an IV. My veins are pretty much shot so I opted for the other huber needle. That really hurt. UGH. I opted not to do the cold spray because they had just taken out the other needle and it could sting. I'm not sure the cold spray would have helped that much but man, oh, man. So glad that is over.  They took me over for the scan and it was so quick. Just 20 minutes. I had to wear my cold cap in there which added another element of fun but it was totally doable. (STEP 2!!)

Next thing is to get my shots. (STEP 3!!!) I'm asking if I should go back to Zometa since the whole reason I had stopped Zometa was because I was required to come in for infusions on another day and get poked with an IV but now that I have a port and can potentially coordinate it my Friday infusions I'd rather do that. Let's put everything in through the port!! It's a power port party.

"Your special assignment was a success, because you followed three special steps! You did your three special steps…now you've earned your digi-medal"...

I was freaking out that today would be hard. And it was. I'm fasting. I was worried about having another reaction to the Abraxane. I'm wearing the cold caps. I got poked in my port twice with increasing intensity. I got scans. I got shots. But very soon I will be home and I can forget. I can breathe and focus on the moment. I can hug the kids. I can be away from this chaos until we hear about my scans results and what it all will mean. There is a crossroads coming up and a new treatment decision will need to be made but I'm not going to think about it over the weekend. I want to break my fast tomorrow night with a lovely birthday meal with my husband. I want to go see Abby perform on stage in her Matilda play and Ballet Recital and bring her bouquets of flowers. I want to enjoy a beautiful beach day with family and friends in this glorious sunshine on Sunday.  I'm still making the very best of each day (and getting through the ones I can't control)… I did my three special steps!

Insurance nightmares...

I found out Friday after I left chemo that insurance has DENIED my radio-embolization procedure. This week Dr. Friedman will be having a Peer-to-peer discussion with the MD at the insurance company to attempt to reverse the decision. (By the way, this happened before when I tried to get in-home physical therapy approved for Leo's cerebral palsy; they had some random MD of internal medicine making a judgement about something specific regarding cerebral palsy..how does that make sense?!?!) Dr. Friedman is also armed with information from the Siri-spheres company and Cedars Sinai. I will see if Philomena can put in a letter of support as well. I will also be calling the insurance company to find out WHY in all their wisdom (*cough, cough) they have decided to deny the procedure. Just how BAD do the liver tumors have to be in order for them to approve the procedure? What brilliant life saving method do they suggest I try instead of the latest cutting edge procedure that is minimally invasive? Surely it can't be a financial decision, right? I have to say that ever since Obamacare has been shoved into existence, and its been good on the one hand because people who are close to me are able to get (however I didn't say *afford) health insurance, the private insurance companies are giving previously insured, current policy holders a run for their money. Nothing is easy anymore. Nothing is approved anymore. Everything requires push-back, follow-up, extensive investigation, filing and re-filing, changing code numbers, etc. etc. A stressful paperwork fight is EXACTLY what people who are facing serious illnesses need, am I right? This next week will be an anxious one for me. I have a birthday on Thursday, perhaps I can pray that good news from the insurance company will be my present that day. Fingers and toes crossed.

The canvas

Sitting here at Tower getting my infusion…I had a scare today about an hour ago while getting the Abraxane that freaked me the f*ck out but more on that later… I opened up this blog and the editor told me that I had a post from last week that I never finished so I'll start with that first.

First of all, I want to give a special thank you and "shout out" to my beautiful friend Nandi. I haven't seen her in forever and out of the blue she asks me for my address….a few days later I got the special PEACE mug for my tea that I was so crazy about in Hawaii. I was so touched I started to cry. It was just so thoughtful and really made my day. I guess I'm not writing this blog for nothing! See, I get free gifts. Ca-ching!! Thank you Nandi.

So how are you? Everything good? Have you been watching Cosmos? Neil Degrasse Tyson is my hero. I love science. I forgot how much I love biology, physics, and chemistry; school was so much fun. So how am I? I am all over the place lately. Generally, I'm feeling run down. The fact that I fasted last week, got chemo, plus haven't been able to get back to a rigorous work out regimen don't help the overall picture. I need this ankle to heal so that I can get back to ballet and back to building muscle. I tried yoga last week the day AFTER I bumped up my melatonin to three tablets per night and it was a pointless session. I basically couldn't do much more than ujjayi breathing, stretching and lying down (emphasis on the lying down part). I was having terrible bone pain the past two weeks. I thought it was related to the ankle but since it was both legs it really couldn't have been. When I went for chemo last week my nurse practitioner Paige said is was related to the Abraxane. Apparently, bone pain can be a common side effect. This week, however, I am having less bone pain. I think the bone pain is related to the Xgeva shots. It's always very achy after I get that shot and then it dissipates over the month until I have to get another shot. I have been able to walk my neighborhood, starting out with shorter walks and building my way back up to the full distance with short stops along the way. Exercise is supposed to help the joint and bone aches so I'm trying to keep it up. I'm also trying to build up my stamina and endurance because I've signed up for the LOVE foundation annual walk!

Walk with Love 2014 for a Future Without Breast Cancer. May 18th at 10AM, right in my very own neighborhood in the Pacific Palisades. I hope we walk by my house. I did this walk two years ago and remember walking by our future house and admiring it. How fun it will be to walk by it now!!

I was trying to explain to someone the other day what being a cancer patient was like. Basically you just do what you have to do. I don't like it but I still do it because let's be frank - there isn't another option. Just like you feel when you know you're going to get a shot or the doctor is going to prod at an injury to check for sprains or breaks - you flinch, you feel dread, your fight or flight response kicks in and you hope there is some way to get out of it or away from the pain. When you realize you can't you just take a deep breath, suck it up and get it over with. That's how this feels. I still feel the way you would and do at the doctor's office. I still feel that absolute dread when I see the Chemo nurses taking out their packets with the huber needles, sterilization materials, dressings etc. I constantly take deep breaths, look away, try to trick my mind that the pain will be over soon. That soon I'll be back home and away from this place.

Fasting has become harder for me. This last one was really difficult. I think it was most difficult because it was emotionally hard. I kind of could care less about the food plus I was pretty nauseous last week too. I was losing faith that the fasting was having an impact. Looking at my blood work though it appears to be working. My blood work has remained stable despite how terrible I may feel at times. When I really think about what was bothering me the most, it is the balance of doing everything I can when I don't really know what is working. I'm trying so hard to be perfect all the time with supplements, fasting, exercise, diet, doctor appointments and follow ups. It's exhausting. Good thing I can remember that I am human. That I am NOT perfect. I am attempting to shift my type A personality. I know that I can take a beat. That I can slip up. Have an off day. Forget pills. Skip a work out. Miss an appointment. Take a nap instead. And feel OK about it. This is what I have been focusing on. Doing less. Doing only the things I feel I really want to or can do.

I had my Y-90 radio-embolization consultation for Dr. Marc Friedman at Cedars. He is very impressive and certainly put me at ease about this process. It will be a series of three procedures once they get done fighting it out with the insurance company for approval. They started two weeks ago with the authorization process. Once we get the go ahead I will have an angiogram to map out the path through my femoral artery to the hepatic artery where they will release the radiation to zap out of the liver tumors. They will start with the left side. Then they will take a four week break before they check out my blood counts, etc. etc. and then do the right side (which I'm curious about since the Abraxane is shrinking them)…

Today during my infusion I started feeling super cold on my right side and was having difficulty breathing. All of a sudden I felt super nauseous, couldn't take a deep breath and started having a panic attack. My nurse had to stop the Abraxane and take a break. 20 minutes later she started again with a slower rate and had to give me the steroids. Apparently, sudden on-set chest pain and issues are par for the course with Abraxane. It is likely that I will need the steroids again next week (which will be the last infusion for this cycle, yay).  It felt like someone was sitting on my chest, while sucking in liquid oxygen at a high altitude. I was very scared. I did not feel well and I did NOT like it. I'm going to get a chest x-ray next week. I want to make sure it was just the infusion and not an issue with my lungs.

Can I say it…FUCK cancer. OK, there I said it.

I saw my therapist Pam recently and communicated my emotional roller coaster and how very afraid I am of continuing treatment, how it has been increasingly difficult to recover after each infusion, and how the upcoming procedure scares me. I do my best to not let the feelings over take me but I still have to acknowledge that they are there and that they are very real. She explained that those dark feelings and emotions can be there and that they are a small part on a larger emotional canvas.
Our emotional canvas is a detailed and changing painting. There will be some dark spots but we can't let it over take the whole canvas. Recognize it is there and that it can grow and diminish depending on the day. Stay in the present moment. Like that lame movie I forced myself to finish watching with Will Smith and his kid, After Earth. The best part of that movie was the message that there is no fear in the very present moment. Fear is in the future or of not letting go of the past.

My fascination with death is becoming less of one with fear and one of acceptance. Yes, I know we are all going to die, blah blah blah. (I'm a little tired of hearing that from people who aren't dealing with a serious illness). And no I'm not saying I am anywhere near that point. I have faith that things are going to turn around for me. I'm saying that understanding and accepting death is a process. A true process that has to happen to achieve peace before you go. You start to see that when people who are close to you die, who may or may not be in similar circumstance to you. Were they ready? Were they scared? Were they in pain and ready to be free? This is a dark spot on my emotional canvas at the moment that I am working through. But I have 100 times more bright spots on my canvas to think about…

I took the kids to Disneyland on Wednesday kind of spur of the moment. Abby had a random day off and Leo is still on his spring break (their spring breaks don't overlap). It was a really fabulous day. Very exhausting but totally worth it. There was this one point after the dumbo ride and hat shopping at the Mad Hatter that Abby turned around in the busy plaza and took Leo's hand to walk with him over to the restaurant for lunch. I whipped out my phone and started snapping away because it was one of those moments that makes your heart swoon and fill with pride. I love them so much!!!

It's time for my last cold cap of the day for this infusion so I'm going to wrap it up. Fingers crossed that I hear from Dr. Freidman's office and can get started this week or next for the radio-embolization!!

Thank you for listening.
Love,
Jess