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.
The big question remains: is it better to drive to Hoag and face chemo calamity or spend 12 hours at UCLA? Time seems to be what I seek, so I choose Hoag. Here we go, the first calamity, the chemo calendar frenzy (no nurse seems to understand weekly chemo! weekly=weekly) and the day 1, day 8, day 15, which cycle questioning begins. Then, the second debate which is an increased dosage that not one doc tells me about. It all seems logical, so I stop questioning the 5mg difference and hope it is fine. The third calamity begins with a stab (literally) to the chest in my port which I have never ever had pain when the “hook up” begins. Something has got to be wrong. My eyes water as I try to ignore the horrible pain. After no blood return occurs, she decides to pull it out (ouch) and try again. This saga puts me at 2 hours so far behind my starting schedule. Still no blood return. Never had this happen and I am told it can happen and my port could need a “draino” process, but that requires a doctor order which I don’t have and also requires another hour. We cannot start chemo unless we get a CBC to verify my counts. I give in after much debate of whether I want more pain or just wait more time to get blood return. I take the pain route since time seems to be too precious. My CBC seems to take longer than normal. It comes back after one week skipping chemo with less than desirable results, but good enough to get chemo. After verifying once with local doc, twice with nurse about my pre-meds, the pre-meds were brought to me wrong. I don’t know who wasn’t listening to who or what happened. Let’s start again with the only 2 pre-meds I take. (this was determined to cut more time by me taking the pills instead of infusion) Nurse brings 25 mg of Benadryl which she says they “push” directly into the line. WHAT? That method of madness is not for me. At UCLA, it gets infused and diluted. Even then, I am unable to see straight. They may have their method, but I fear vomit or some additional crisis. After much debate, nurse agrees to infuse it with some dilution. I pass out after this, but only to be monitored every 15 minutes attached to a BP machine. Whatever?! I start calculating my arrival home and thankful that I will see Alex before bed time. I wonder with the series of calamities about the patients who put their lives in the hands of the “experts”. Bye, bye, patients! If I have learned anything, it is never to be afraid to ask questions since humans are involved and humans can make mistakes.
On the other hand, the pursuit of getting compassionate use for the immunotherapy drug seems like a dog chasing it’s tail routine. Bottom line is that drug companies are forced to avoid compassionate use since FDA is involved and one person getting the drug outside of normal routine would force the pharmaceutical company to report this both good and bad. This would skew the results and cause the drug to not come to market or cause delay. So, we presented my situation once again to someone who doesn’t really understand first hand to see if there are any answers. We are not at the point of flying to India or China or Europe. It seems strange that this would be my only option. I will pray and hope that the immunotherapy will come to Cedars and UCLA sooner rather than later. This would give me the chance to enroll in normal phase 1 trial. I was told Nov, then Dec, now Jan. Hoping and praying that there is no more delay. I still must focus on the here and now. This is difficult, but made much easier with less time living in the toilet. Having conversations with a door between you and your child, I am finding a lot lost in translation or limited conversations with short answers. I decide to take control of what I can and try to focus less on what limited control I have in the course of the disease. I also decide to focus on my good moments and trying to do anything fun in the few moments. This is as simple as hearing Alex tell us about his tutoring or his search for his teacher’s purse which he found in the teacher’s lounge. I know many of you are on Thanksgiving, Hanukkah, Christmas and the frenzy of all you have to do. I encourage you all to take a moment to enjoy the simple things and remember what you enjoy about the holidays. Is it your egg nog latte? Baking cookies? Hanging with friends? Decorating your house? your tree? Whatever it is, cease the moment and try less to get caught up with the craziness. It isn’t worth it. Enjoy this time!
I know you have been wondering where I have been? I haven’t left the bathroom since last Saturday, but it really started Sunday night. My new drugs have delightful latent diarrhea. I am talking non stop never leaving the bathroom diarrhea. I have had no real food since Sunday. I have now finally worked up to broth and oatmeal. We have had to postpone my chemo until tomorrow, Friday. It has been a rough week. My last call on Tuesday night put all of us in shock when my doc explained that if the diarrhea did not stop, I would need to go to the hospital and be put on antibiotics to avoid sepsis. It was serious. I knew it was, but I couldn’t face that tipping point. So, I kept taking immodium (since Sunday non stop) and even doubled up on the dosage. For the first time, I felt worse instead of better before getting chemo. I knew I couldn’t get chemo on Weds. I am in a weakened state which is not a comfortable feeling to start this all over again tomorrow and again on the following Weds. Of course, I had to deal with the sell out crowd at the chemo closet which luckily my doc intervened or I would have had to arrive at UCLA at 7:30am. Oh that would have been great! Glad they are making it as easy as possible. I have not enjoyed living in the potty. It has been frustrating for everyone. Tomorrow is a new day and I must gather all my strength to continue this ride and face the toxins once again. So far, it has kept the tumor marker stable. I am thinking it will do it’s magic soon. Hoping to get some relief and comfort in the days ahead especially avoiding living in the potty.
It all started on Monday at Cedars. At Cedars the cancer center is in the basement as I am not sure if it was a throwback to the 70s when people just whispered the word cancer and no one talked about it. Those were the days when your grandparents had cancer instead of now, when cancer hits children, teens, and moms and dads. They improved the basement by pretending to light up the place with artificial light. I still know I am in the basement because of the absence of windows. We meet with the team and Jim has his laptop. I am armed with my notes of treatment list and future list. Our goal was to get his opinion. His goal was to sign me up for a trial. This made for an awkward meeting. I tossed the mention of tween Alex as if that would humanize me for this “experiment”. This is a fine line docs walk as they must fill their trials. Going back to UCLA trial doc visit, the doc seemed apathetic. Now, I really prefer that to the harsh reality tossed in my face. I have to admit that he tried the nice approach first. When this didn’t work, he avoided reviewing my real options and tossed in how it won’t work or will eventually stop working. Again, no one can take away my hope. Lucky for my rock star husband jumped in when tears began to stream down my face asking how I would tell my son that this option which may or may not work would be my best option. Jim forced the issue making a dream scenario if all other trials were open, would this doctor choose this one for me. The answer was “no”. I signed the papers anyway just in case. Of course, these research nurses asked Jim if he was a doctor. He said that he had to learn this to keep me alive which is totally true!
While sitting in the Cedars meeting, we saw the fax come in with my tumor marker rising again. We have a small window to make the right decision. I call my UCLA doc, Dr Konecny who answered and advised me that without knowing what I was about to say, had ordered this new duo of chemo already. The plan was in place. I would try this new combo which is an off label use of existing chemo. I have yet to see where it was done in other cancers, but I have to trust that he said he knows this combo. This combo is harsh and causes major side effects. I chose not to read about them until Weds. What I also had to deal with is that somehow my new assigned nurse from the insurance side is proving to be more about the insurance point of view. My old nurse assigned via an old VIP department which was an outsourced insurance benefit proved to be life saving for me. The new benefit is proven to be life squashing and stress inducing. Even though we all know that UCLA is the slowest to bill for chemo, I had to sign a paper saying I would be paying $14K each week. We both know it will get resolved, but they don’t know that and so do many other cancer patients. So, these cancer patients wonder if they need to sell their house, car, IRA funds, stocks in a child’s college savings. All is very annoying. We decide to just try as much to help the process along. Meanwhile, I need another resource to help me through this weekly new chemo. I decide to call the palliative dept at Hoag for many more reasons. I need a local resource, an advocate for me, someone to call on my friggin time zone. This new nurse worker is not so VIP. She calls during her 8 to 5 shift EST, checks the box that I am not jumping out any windows (otherwise, the script would advise her to call the EAP plan) and finishes her 5 minutes. My old nurse would call me three times a week when I was on a new drug protocol and ask her boss, other nurses across the US, old colleagues for tips and tricks to help me. I know she helped me more than I probably told her. I know she prevented many trips to the hospital by helping me manage my side effects. I never said thank you enough to her, but I did spill my heart to her telling her how much she meant to me.
Meanwhile, Weds approaches and my VIP status is renewed at UCLA. I get hugs all around and support from everyone. We are now told that these drugs alone without pre meds will take 5 hours. I pull out any pills I have which I can take by mouth to eliminate more time for infusion. My nurse navigates this path for us. We still end up staying there until 5:30pm from 10am! We got home at 8:30 since we had to get off the freeway. On a bright side, I had no serious side effects, but I was fully loaded with anti-nausea meds. Today, this new combo hits me strong and I feel like I hit a brick wall. I took a long nap since my head could not support my body. Oh, yes, there was also the mention that this is every week and since it is so complex, I must go to UCLA. One day at a time. We will just do one hour at a time. On a positive note, my mom is coming at the end of the month so we are trying to plan something fun to do. It is always good to have fun things to look forward to! Enjoy your weekend, your sunshine…LISTEN to what your body is telling you, breathe, relax, take a moment, reduce your stress, enjoy the moments NOW, today! Tomorrow is another day. No regrets. Live each day to the fullest. Please, please try not to stress over the little stuff.
I was listening to the conversation that Dr Glaspy was having with a patient who has curable cancer, 95% curable. He told her over and over that it was cured 95%. They wanted to know about the other 5%. He told them, you could walk out of your house and get hit by a bus. He is like that…very in your face. He told them that he can only deal with scientific facts. He told them they were not listening. He walked away, shaking his head. I know what he was thinking as we have heard him give other scenarios too where there is no option or knew what he said to my cousin Margie. I asked him if I could have her odds or her cancer. He responded that, “there is always someone worse than you who would be willing to trade places with you in a minute.”
I know this to be true as I had to say goodbye to my neighbor, my friend, my fellow warrior this weekend. She passed away in her home with her family beside her. We had to tell Alex. He didn’t know how to handle that feeling of sadness. He played his piano and trumpet for an hour. Then, he wanted to go for a run. Unfortunately, they were taking her body away at that moment. Jim called his gym to see if he could take him since we don’t have a membership for Alex. The manager was more than happy to help. Alex keeps telling me that he sees my neighbor Gina everywhere he looks. I told him that she will always be with us just like Margie, just like Charles, just like Aunt Sylvia and Uncle Max. He said he understood, but I know his thoughts are much deeper. He kissed me on my forehead and told me he loved me. I know his worries, but I push them aside to fight on. I can do this, so again I ask you to make the most of your days. Listen to your thoughts and see what they are telling you. If it is that cleaning your house is more important than sitting for 5 minutes with your husband, son, brother, sister, mother, father, friend and listening to what happened during their day, then you are not hearing me. I know firsthand about the limits of tomorrows as living with cancer we are forced to face them weekly, daily, or monthly. As I watch the sunset in the distance and see the glow of night coming, I picture walking on the beach with Alex and Jim. Find your happy place. Today. NEGU!
When you start a new chemo no matter the kind IV infusion or oral, there is always some anxiety of what the side effects may be. Since I have experienced it all from completely debilitating bed ridden to slight nausea, hand/foot syndrome, hair loss, and rashes and much more. Taking a new drug makes all these ranges of emotions surface even though I try everything to push them down. Reading the list of side effects can become psychosomatic, but you must be prepared to avoid mouth sores in the throat so bad, you go to the ER or hand/foot syndrome so bad that you need a wheelchair. With the first dose, comes the relief that you didn’t have an extreme reaction that requires immediate attention. Now, with oral meds, I must get past day 3 in my mind, since some effects creep up and become one more crisis to deal with. Finally, the last thought is always, “is this working?” In the back of my mind, “what will be next?” Then, I start my calculator, but immediately stop it since it is similar to the moments when you wake up in the middle of the night only to look at the clock to see 4am and calculate the 2 hours more to sleep, but you end up awake for the two hours. Of course, with my finding my groove, I wonder how I will leave my house when I am supposed to be constantly drinking water or my bladder will start eroding due to the toxicity of the drugs. Each time I pee, I have to think, “was it more than 2 hours?” I know that the first blood test will determine how these drugs are affecting my bone marrow since the one drug is specifically used for organ transplants so the body doesn’t reject the new organ. I still drink the chicken broth only to be almost growing feathers. Monday will begin with the attempt to change my appointments to negotiate and communicate with the Hoag cancer center. Always there is a mix up and every attempt to prevent this will surely end up with more confusion. On an interesting note, the concerns I voiced to the lab have resulted in the receipt of a Starbucks gift card for my troubles. Plus, my post on the cancer message board resulted in the receipt of a giant box of Heggy’s chocolates. If you have never eaten Heggy’s, you don’t know how delicious chocolates which are hand dipped, hand wrapped are! Plus, just the smell is enough! Guess you never know what happens when you help people or have your voice heard. When I put my voice out there, it is only for the reason to help others waging this war with their cancer. I know others aren’t lucky to have a rock star fake doc like Jim and most don’t have the energy to voice any concern. It always surprised me how difficult the every day living with cancer is…not the disease itself, but all the work involved. Unfortunately, nothing is easy. Every call usually leads to a dozen more calls. So, now with Monday and not one, but two attempts to leave the house only to return to take more meds, I am not in this groove. I think about people including children who have to take daily meds and wonder how they do it! I am thinking that most daily meds don’t cause you to have some sudden waves of nausea that you think you are having a heart attack. (seriously) Add this to the additional side effects for new drugs and I am in the twilight zone of chemoland. I am wondering why I need goggles and gloves to handle this drug that I am putting in my mouth! Try to quickly swallow a horse size chemo pill knowing that you should have your insides coated with some magic dust before it gets to where it is supposed to go. The one chemo pill (I have to take 2 of these twice a day) are coated with a lovely coating of something and did not require a full body armor to remove out of the container while the other (I have to take 3) are blue powdered awful non coated drug. Maybe this is why these burn holes in your bladder. I did read that it is all the chemical reaction. I cannot even wonder about the days to come since I am just in the unknown zone. I have to focus on reliving the Algebra crisis with Alex (oops, he cannot read his writing) and we have to decipher his hieroglyphic symbols only to determine that he forgot a negative sign. Enjoying listening to tween boys talking about so much silliness that I now have a glimpse into what was going on while I was in my flashback of tween time focusing on my hair and makeup. Bottom line, there are hair crisis with both. It is all normal and all fun. Enjoying cleaning Jim’s office wondering why he keeps all this clutter (oh, I mean why I keep all this clutter). Still looking for the binder of info that I put in such a special place that I am sure it will reappear one day. Laughing with friends, hearing their stories, talking to my family about the week of activities. This is what is all about. Enjoying every minute of every day despite my frequent visits to the “office” (bathroom) and multiple schedules of pill taking. I can do without the overwhelming fatigue that it seems like my head is too heavy for my body, but all the rest is just what I do. You can still make me laugh with your worries and I see you are laughing too when you even mention them without a thought. I go back to what Alex says all the time, “no one can understand what I worry and think about unless you are me.” Perspective…I learn something new everyday and I am thrilled to be able to learn and grow every chance I get. I hope you find your fun. If you stop running and hurrying for a moment, you might just glimpse into a lesson learned and push your worries away.
Tumor marker did not cooperate. The strategy remains the same. Remind the doctor that I am not the “average patient” and choose to try to out smart this disease. This ride is a dizzying effect like the merry go round that you want to stop spinning and you cannot quite catch your breath. Just when you feel like your feet have settled your body into the ground, the spinning continues. I hear my own voice speaking words of strength from a whisper to a scream. I hold back the tears. With each turn around the corner are the faces of the path of this disease and it’s destruction. The hallow faces with the spirit of these patients barely hearing their own voice. The sound I hear is not their own voice, but just whispers of air. I don’t recognize this whisper from the months before filled with laughter and joy. The voice has disappeared for the continuing fight. The words they say are the same, “I’m tired” and I remind myself not to use these same words. I visualize these faces and look in the mirror to see myself still present full of fight and strength. I know the path and I recognize the path, but I choose to do everything in my power to avoid the predictable path. The game to outwit my cancer continues. The calls begin, the emails start, the strategy sessions begin. My mind says slow down, but in the very quiet of my soul I hear a scream of “hurry before this cycle of craziness gets ahead.” Jim slowly explains with a calmness that I never can find for myself. He reviews the drug choices, the drugs I have tried, the data we have collected with every scan, every blood test. He allows me to make a decision, but often there is no perfect answer. I explain my feelings about what I want as we rehearse what the doc may say or guess what his response would be. We change my approach with less emotionalism and more science plus more facts. I usually become frustrated and upset at the frequency at which we try to outwit this cancer. There is no clear path, but there is always the review of these drug combinations for quality of life. The goal is always first to get rid of the cancer and second be able to tolerate the chemo. The same question comes to mind, “why do I want to accept the stability of disease? while my symptoms increase, my quality of life declines?” Then, comes the real question, if all doctors have the goal of treatable cancer with the same end zone in mind, why not think of trying something else new? Why if there isn’t an exact science to this chemo roulette is the group mentality the best approach? Then, I realize the answer is that there are too many of us. For infusion centers to be “sold out” or overbooked, there is most likely never enough time with so many patients. I’m lucky to have my doc always willing to listen and hear my plan even though at first it sounds outrageous. He usually talks things out like we are colleagues instead of me being the patient. I’m sure it is strange to not go by what is the normal thing to do. I want my voice heard. I want to be the voice for those with me, before me, beside me who have lost their voice. I am not looking for just the stability of the cancer. I am now on the other side of constant pain, inability to eat, sleep, and go to the bathroom. Without constant pain, I can be more present. So, why would I want to spin the roulette wheel on drugs that are partially working? Let me try something new. Let me try. Isn’t it better to try this when I am strong?
Our conversation went well, but started with the usual suspects. I am not the average patient. I have reliable data. I track these cancer cells every move. I don’t wait any more for the cancer to grow out of control. He agreed with the idea and suggested something new based on all our ideas that Jim had researched. We know the toxicity of some drugs are worse than others. After all this dancing is over, we decided on two oral chemo drugs. Now the fun really begins.
First, I get a call based on one of my numerous attempts to fix some broken systems with just a request for basic communication. I am told that the lab issue (when the lab was down for maintenance after the labor day holiday) is brand new. They have never heard of any complaints from the cancer center. My first question was, “have you ever been to the cancer center?” Followed by, if not, you cannot understand that patients are fighting for their life every day. They put up with the frustration, lack of communication, and just chalk it up to the way things are. I am told the lab is very complex. Is it too complex to communicate a simple schedule of maintenance and just curious why the maintenance has to be done during the day. Oh, no nurse has ever complained. Again, my response is, “have you been to the cancer center, maybe a visit is just what you need.” Another comment was that the nurses at the cancer center do every thing in their power to help each and every cancer patient every second, every minute of their zillion hour shift. No, they don’t have time to “complain” about the lab. Why not just try communicating? How about an email? The voice on the end of the phone seems puzzled since they have never heard any complaints about the lab. I have to add that I have never in my 3 years of being treated been talked to with such lack of compassion, but I guess that is something that was addressed. Oh, by the way, I speak for all those patients who cannot, do not, and just are fighting every day to live. I mentioned that I fight every day too, so it isn’t necessary to call my doctor because he has a zillion patients. I am given a direct line for any future lab issues. Success? Who knows? My voice is heard.
The battle starts with the order for the new drugs. It seems like a ping pong match that is non stop. I call the doctor and the pharmacy (delivery for expensive meds), page the doctor, call the doctor, call the pharmacy, call the doctor, talk to the doctor, doctor phones the pharmacy, doctor calls me back, doctor calls the pharmacy again. This continues ALL day! My right eye is throbbing out of my head. I make one more call to confirm the delivery. Surprise! My meds will be delivered between the hours of 8am and noon. Yes, I told them it was chemo. Yes, I told them it wasn’t cable tv being fixed. Yes, I told them I had to take my first dose tomorrow morning. You know what they said. “You are lucky you are getting this tomorrow.” Oh, I sure am lucky to have cancer to beg for a drug, to spend the whole day free on the phone, and then I could maybe or maybe not get it by morning. I will wait just like I wait for the new sofa to be delivered only this is a drug that is supposed to stop my cancer growing. Good to know I am lucky I am getting it tomorrow. Good to know that I can laugh about it. My positive (even though UCLA is sad I am not visiting more for the treats that they were looking forward to) is that no drive tomorrow and no visit to see the visual path of destruction of the cancers. I will be at home. Of course, during my few free minutes, I read about the side effects and they do include hair loss. Oh well, guess I need some more tools for eyebrow drawing. I am concerned about the spontaneous bowel movements which will not work for me when I am walking along the beach. I am told not to worry since that only happens to a few percent. Of course, this includes the hoof and hand or hand and foot syndrome. Been there done that and I did get a tshirt in Greece! So, here I go again. I hear my voice in my head even though the thoughts are in the way back of my head. I shove them to an even further part of my head. I tell myself that I can do this. Another drug, another day. Tomorrow waiting at the door for my delivery seems far better than sitting on the 405.
I decided decided to post my strategy and lessons learned from my ongoing treatment (chemo non stop) from 2010 to now.
1. Be your own advocate: BYOA
2 mistakes happen so try to avoid them!
3. Take control of your treatment: TCT!
4. Average dosage based on 200lb man, your dosage may be different
5. Sometimes there are no answers
6. Living with the unknown, it is what it is…
7 It’s okay to visit the island of negativity, but make sure it is a short flight
8. There is always someone sicker than you, dying today, yelling for your doctors attention, so choose to be demanding at the right time
9. Nurses are the best source of info
10. Ask questions, don’t be afraid
11. Ask for help, to friends, neighbors, co workers,
12. For you to succeed, you can’t do this alone, this journey requires you to get help, ASK, ASK, and ASK
13. Take notes and have someone else present at every doc meeting, each person hears different things.
14. Eat and drink , whatever, whenever, your body needs fluids and nutrition to fight the cancer
15. Seek out 2nd , 3rd , 4th opinion, you can learn something from every doc. Never stop asking
16. use your time wisely and save your energy for what is important to you.
17. Think outside the box, have an oncologist who thinks the same way or find a new one.
18. Find your style, dress for a successful chemo! Mind over matter.
19. NEGU: Never Ever Give Up
20. Hope is a 4 letter word, so never lose hope