Archive for December, 2013

“This time of year is supposed to be happy. Why does this keep happening?” Alex

December 25, 2013
I knew the reality of the day would happen based on my increasing symptoms from cancer growing. With the growth, there is ascites which for me causes constant pain. So, Monday night I crept into bed with a heating pad, sitting up, and hoped no one would notice. The chemo I took last Weds isn’t working. Even though I knew my tumor marker had to be sky high based on my symptoms, I was not ready to face this reality. It just couldn’t be happening again, so soon. I close my eyes and see all the photos from the video Sue made of the NEGU cheer leaders and am comforted by so many. I am frustrated that I hit my body with such toxicity that all it did was eat my blood cells. I am overcomed by frustration and fear. I have no plan B. When I got my blood done yesterday, I wasn’t ready to hear this reality that my tumor marker is escalating too fast. This escalation consistently matches my increased symptoms. With increased symptoms, it is virtually impossible to hide the pain behind my smile. My rock star husband tells me about his list of ideas and he refuses to give up. He agrees that the days and weeks ahead are not going to be easy not only from my symptoms, but some of the ideas are full of side effects. This can’t be it. There has to be an idea for a plan B. We talk to Alex who just breaks down and cries. He questions the “why is this happening to our family? Why during the happiest time of year?” I remind him what he tells me that we are lucky I am here today. It is unfair. The timing couldn’t be worse. Jim reaches out to as many doctors as we know with hopes that some will be “connected” even though it is Christmas. At the same time, a FedEx package arrived yesterday with an expert opinion from a doc at Dana farber. He had two new ideas, but without the full knowledge of upcoming immunotherapy. I couldn’t bare to read this reality too of a poor prognosis for my future. Jim reminds me to read between the lines and take the good info from this report. We attempt to stumble through the day feeling numb with all this reality. The night has always been the worst. It begins with Alex in and out of our room. By his third visit, he is crying full of worry. We comfort him and remind him that I am strong and unlike many others. The visits continue until about 11:30 when we agree to let him read anything he wants and he eventually falls asleep around midnight. Unfortunately, I become the next casualty with Jim reminding me of this list of ideas. What starts as just a few tears ends up with uncontrollable sobs and a full blown panic attack. I was beyond any comprehension of hearing anything except my focus in being in tune with my increased pain reminding me of the cancer growth and this list of all unknown roulette of ideas. Jim continues to comfort me and I give into sleep.

We wake up to find Alex sleeping on the sofa. He couldn’t sleep. My heart hurts for him as his young mind is unable to cope during the late night. We also get one response from a doc who has always been on our team and an incredible source of info. She is available today to talk to us and help us prioritize the list. Moments later, my oncologist responds that he will respond later to the list, but likes one idea. I read the side effects of this drug combo. I realize that tomorrow may not be the best idea to start another drug combo while my blood counts are so low. I reach out to the email responding that I want what is the safest even if this means a long transfusion of whole blood. With my family’s arrival, I know I must be focused on this valuable family time especially since my own family is breaking. The sun is shining. It is Christmas day. Today I ask of all of you to savor every second with your family, focus on your faith whatever it may be, enjoy the importance of what this holiday means to you, and never forget that today is now. Be thankful, be grateful, and I am thankful and grateful for all of you. You continue to support me and I know how important this is not only for myself, but for my entire family. Enjoy the sunshine.

My NEGU: Never Ever Give Up Cheer Squad!

December 23, 2013

Best medicine ever! Love my creative sister! Love my Cheer Squad!

Not asking for much just a teeny tiny bit of positive news

December 18, 2013
Another call with one more doctor who is astonished by our unorthodox approach to my cancer. Of course, no new answers.No, plan B yet. This week I continued to get white cell boosting shots ending with what seems to be a cold? I secretly panic as the last time I was here in May I ended up with pneumonia. I say some prayers and wave my real magic wand around my belly. (yes, one of my funny friends left a magic wand on my door step!) What is  with the nose bleeds? Uh oh, did this evil twin sister combo eat my platelets along with my white cells? I have had enough shots and chicken broth to be officially named the mother hen of all chickens. It is out of my control just like the rest of this cancer job. What I do realize is that i have control in spreading our “unorthodox” approach to others and provide a glimmer of hope for someone else. I’ve stopped reading message boards as the news of the season seems to be more and more losing their battle. My fight continues and hopes that the tumor marker goes down and cancer goes away. I question my decisions of exiting my house with so much coughing and colds everywhere. Do I take antibiotics preventatively to save myself? I think the most frightening issue with the double evil sister chemo is that it eats the white cells and you have no way of knowing that you are a ticking time bomb. Now, if you really have zero sickness fighting cells you get a fever as a warning, but that puts you in the hospital. With the red cells and platelets, there are much more warning signs. Although, the only thing for platelets is a blood transfusion.  Last week, I was so surprised having minimal white cells when I had a break from chemo for one week. So,my secret goal is to get chemo without ending up in the hospital. I also am secretly wishing for a downward trend in the cancer growing cells. While we are on wishes, I also secretly hope all parents of teenage kids could keep reminding their kids what this season is about and what they should be thankful for AND just a simple message of kindness: treat others how you want to be treated. A little kindness goes a long way. This way I can avoid seeing the confusion and frustration from my son on a daily basis. His quote from yesterday was, “how can my friends take their anger out on me and how can they be so mean when they know my mom has cancer?” We remind him of the special few who don’t follow this pattern and whose parents I’ve known throughout elementary school. We also remind them of “this age of ME” and attempt to refocus him on some great friends who have been there for him.  Just because this age demands independence, doesn’t mean that you stop parenting and stop reminding kids to show a little kindness. Instead of asking what they want for the holiday season, ask them what they can do for others during this time. Enough of my messages of the day! I’m off to play the chemo roulette…will I or won’t I? Will the numbers be in my favor? Will we have a plan B? I will close my eyes and remember Alex playing Winter Wonderland on the piano with his own jazz twist.

UCLA Weds

December 12, 2013
Tomorrow I go to UCLA to start a new-ish chemo combo. The drugs are navelbine and epirubicin (I had doxil which is very similar to epirubicin). In the past weeks, we have spent numerous hours and hours sending emails and talking to many doctors. It has been very emotional with a lot of “no” responses and not a plan B outlined yet. We are looking for phase 1 trials which are very risky and this is a tough place to be. There are many phase 1 that I don’t qualify for due to prior treatment or no fresh tissue sample. We are primarily focused on PDL1/CTLA4 trial combination which is immunotherapy. Some may be available in January. There is also a trial that my tissue is being tested for which is in Bethesda. So, you see we are now open to going anywhere as long as it is something that is worthwhile. We are continuing to learn with each and every conversation. We do feel very lucky to have such a wonderful team of doctors and nurses who are trying to think of something to try that may work for a bit longer.  We appreciate all your support both near and far. We know as frustrating as it is for us, it is the same for you. We wish there were more answers. We remain hopeful and positive. I am doing everything I can to stay strong despite additional symptoms brought on by the cancer.

 

 

Weekend conflicting feelings

December 12, 2013
Waiting for someone, anyone to come up with a solution, a plan, but no answers come. Trying desperately to live on the moment when thoughts seep into my mind of the “what ifs”. The deep internal calculator is coming up short. Fear creeps into my sleep and my waking thoughts and I realize nothing good can come of this. I have sent dozens of emails to my doc with most having no real answer, but it would be helpful if he just said, “working on this or we can talk Monday”. Instead, wheels keep spinning and I remind myself of how healthy I am compared to most,but also know that things can change rapidly. Knowing that all trials require a waiting period which means that my cancer will grow, my pain increase, my symptoms become too difficult to ignore in my daily tasks. I am so baffled that this process of survival is not easier. The questions of tomorrow keep haunting my daily tasks. I look at Alex and pray so hard that all will be okay. I think of Jim and worry so much. His heart is breaking every day that he spins his wheels more to come up short. What do others do? How to others cope? Do they find comfort in god or friends and family. I talk to my mom more often just now to hear her voice, but knowing she can say nothing to comfort me or to reassure me. With so many cheerleaders on my side, friends and family asking and asking, how can we come up short? How can I plan my tomorrow when I may be living across the country alone on some trial without the daily motivation of my family. Of course, there is Skype, but would this idea be a good decision. So many ideas for phase 1 trials, but each require one thing or another and all require time. I need answers fast. I must push all these thoughts buried and focus on this next chemo combo working for more than a month. I am secretly hoping and praying for 6 months. I must go to UCLA to be the constant reminder to my doc to push myself to the front of the list. I have to stay here. I am grateful for a wonderful son and husband. I am grateful for a wonderful mom, dad, sister and family. I am grateful for my friends. I am grateful to have minimal symptoms from my cancer that doesn’t prevent me from exiting my house. I am grateful for living in aliso so close to the beach. I am grateful for the nurses who care for me. I am grateful to be able to walk and hike around, smell the ocean air. I am grateful to visit with friends when I have free moments. I am grateful to watch Alex grow into a young man and see how smart he is every day. I am grateful to hear all his amazing ideas for his future businesses or inventions. I am grateful to hear his stories about his friends and his daily life as frustrating as he may find tweendom. I am grateful to hear him improvise with his trumpet and see his body sway to the music. I am grateful to hear him play his favorite jazz and blues tunes swaying his head back and forth. I am grateful to see his focus on all things big and small. I am grateful to hear about his tutoring of special Ed students and math students while he explains his creative football or food analogies to help with understanding. I am grAteful that so much comes easy for him and love to see his mind at work. I am grateful that each birthday and each Hanukkah, he asks first for a cure or treatment for my cancer. I am grateful to watch him play with his toys and games. I am grateful for watching Jim and his silliness always making me laugh. I am grateful to enjoy a cup a coffee every day. I am grateful to look out my kitchen window and see the sunrise. I am grateful to see the holiday lights once again. I am grateful to enjoy a hot chocolate in the cold night.

My rock star husband continues….

December 6, 2013
This post is dedicated to my rock star husband Jim who really defines the NEGU attitude, plus he still looks at me with the same loving eyes even if I have my wig on crooked, even if I live in the toilet, even if I have no eyebrows and thinks I am beautiful no matter what. He sees only possibilities and stays calm 99.9% of the time even with Alex acting like a normal teen. Jim continues to amaze me with every spare second night or day, weekends more than ever, he leaves no stone unturned. His efforts with his company, his colleagues, and all the extensions of people who know people have shown us continuous support. You never know what will bring who to the crazy ride we are on. We both know too well what the end road of this disease looks like. If you have seen any recent photos of me, you know I don’t look like a typical cancer patient. So, how can there be no real answers with all these brilliant people all over the world? There are constant tidbits of info which usually confuse me or are more discouraging news of much of the same. The chemo will eventually stop working no matter which one I try and response rates for ovarian on upcoming trials are not very positive. The power of the rock star continues. He sends emails after emails in the darkness of the night with the glow of his ipad remembering each detail. We keep asking and trying other ways to see if there can be any answers. There is the continual frustration combined with so much unknown. We have to focus on how I rebounded from living in the toilet despite the growth of my cancer. We have to focus on the facts that my blood has remained stable (ish), my energy level way better than the average cancer patient, my weight on the heavy side for me and my motivation to stay alive. We cannot think about the tomorrows, while Jim tosses up many balls in the air hoping that one will hit someone in the face. I have sent photos of our family. I have not stopped asking either. Have there been bumps in this process? Oh yes! There was one doctor (neither a social worker or an oncologist) who thought it was her job to remind me that people in my situation die (oh I never knew that?!), do I understand that no drug company is just going to hand over a drug to me, and lastly I should consider telling my 12 year old that there really isn’t anything to try, so he should prepare for the inevitable. I think I was too shocked to respond to this crazy, “what not to say to a cancer patient who has tried every chemo available”.  I did tell her she didn’t know me and she was wrong on every account.  She was not my oncologist or a social worker. She was a “doctor” who wasn’t helping on this path. This is the time to push myself to the front of the mind of all docs I know. I refuse to believe that the next drug combo won’t work. Again, the numbers on what has been studied with these drugs are not what we want to hear. I am not a number and I have taken chemo after chemo only to continually manage all side effects. It is difficult to not totally lose it. Oh, I have had my moments privately in my room, but move on quickly because it helps no one including myself. My goal is to remain as strong as possible and stay on top of things as we usually do. Focus on making most of the day today and what will bring the greatest happiness to my family. My rock star husband won’t give up either. He understands my cancer almost better than I do. He analyzes each trial, each chemo, each idea and attempts to come up with some sort of temporary plan. He does this in every free moment while managing Alex’s tweendom craziness too and giving 150% to his work. I know for Alex that school is his escape just like Jim’s work is his escape from all this reality. It is the night hours that our house has become the night of the zombies. We are all marching around the house in the middle of the night. We often don’t meet, but see a flicker of a light on and off. My escapes are few, but I get glimpses into a reminder of how lucky I am each week when I meet another 20 year old woman with babies and cancer AND her husband just finished chemo or a young man of 30 just diagnosed wondering why this is happening to him. I see the bodies brutally beaten up by their chemo and their cancers. When I go for another test, I always meet a nurse, technician, or fellow patient experiencing what I have been experiencing. I pass on my words of wisdom, my tricks for chemo, my tips for travel, my advice for eating with your eyes closed/nose plugged. I hear about their multiple surgeries, bowels resected, kidneys removed, lungs filled with fluid, and usually the inability to eat much. I am reminded of how lucky I am to have continued this journey with one gigantic surgery and constant control of my cancer which comes from my husband’s constant planning of the next plan. He has hit a wall without a real plan, but sees constant windows of opportunity. He pushes and pushes while I am “dizzy” from my new cancer symptoms. We have to remain hopeful since we know that no one can take away your hope. We have to focus on today. We hope you will enjoy every moment and try to ignore the outbursts of your teens even though it isn’t easy while they are telling you that you are mean, horrible, and know absolutely nothing. Deep breaths every day. Enjoy the sunshine. We will!

from Nov 24

December 1, 2013
I have been meaning to provide an update, but hesitated since I really don’t have good news to share. In the past month, I was on a drug combo which proved to be intolerable. I was on the brink of hospitalization 3 times. As a long term cancer patient, I know too well that once you tip over this brink there is often times no coming back. So, we had to make the difficult decision to discontinue this drug. For the first time, I could not get control of the side effects and I was losing my strength with the inability to eat and being house bound for over a month. This was very challenging while I attempted to maintain as much of a daily routine of normalcy for Alex. Unfortunately, being on just one of the two drugs is not stopping my cancer from progression and seems to have hit my white count, so I have to be bubble bound. I have used my options of drug combos in just 3 months. We are now left with seeking compassionate use of a drug PD1 and/or PDL1 from Genentech, Bristol Myers, EMD Serono, Merck, and CureTech(Israeli company). If any of you are familiar with this process, the odds are stacked against me. It is just the nature of the way drug approval works. Jim is using his company to reach out to these companies. Plus, we know from my doctor and a doc at Cedar’s that they will both get one of these trials (phase 1) starting in January. This was already pushed back from Nov as this is a process as well. I am on waitlist for this trial in Portland. This is an immune therapy which is something I haven’t yet tried. Phase 1 is the guinea pig stage, but I don’t have much choice now. So, there is some juggling of what is the best decision for me while my cancer progresses. We hope that I do not become sicker from the cancer. If I am not well enough by January, then I am unable to get into the trial. With so much uncertainty, this is the most stressful place my family has been in. I choose to keep fighting because I have worked too hard for over 3  ½ years to do anything different. I have been in the place where my cancer progresses before, but having nothing left in the bag of tricks is different.
At this time of Thanksgiving (or Thanksgivukkah), I choose to be grateful. I am grateful that I am alive. I am grateful to have such wonderful family and friends who have supported me all along this crazy ride. I am grateful for the small things (as a very dear friend said to me) will be the big things. I ask you to take a moment when you get caught in the whirlwind of what this season brings to think about how Jim, Alex, and my family live day to day with so much uncertainty and know that as big as your troubles may seem, you and I both have today. Choose to live in the present and be grateful for today. I am fighting harder than I have ever fought before. I am hoping and praying that I can stay strong and remain positive. This is a very scary place to be, so again I take things minute by minute. The sun is shining and even though I am unable to be around crowds, I can be outside in the crisp cool So Cal weather. Next Weds is chemo again, so I wish you and your family a happy Thanks-giving! Be thankful, be grateful, and be present.