Archive for July, 2013

Settle down, it’ll all be clear Don’t pay no mind to the demons They fill you with fear “The trouble it might drag you down If you get lost, you can always be found” Phillip Phillips

July 29, 2013

I thought I was strong enough or could handle “coming home” to UCLA. Wednesday my nurses greeted me with open arms. It is oddly enough like seeing on old family member who you haven’t seem for a while. Even though I had been there often, my nurse ran through important list of questions. My blood numbers came back even stranger than strange. My platelets which are normally eaten by this chemo went up again by 10 points. This is unheard of…my doc laughed and my nurse said I should publish how chicken broth is the home remedy to prevent taking those horrible shots to boost your bone marrow. Now, although my white count just squeezed by the lowest parameters enabling me to get chemo, I am now at high risk for infection. DAMN! This isn’t going to ruin my week off of chemo. I must remain vigilant and smart about being out and about. Plus, I have a plan to drink gallons of chicken broth so I can exit my house.

What happened next made things more difficult. I felt that Margie was with me. The nurses came one by one to express their sympathy and sadness at Margie’s passing. They told me it was difficult for them to see her before she left for Ohio and even at her last visit she was so full of hope, laughter, smiles, and jokes. As the tears began to fall and the tissue box became my new friend, I felt such overwhelming sadness. Each nurse told me to focus on staying strong as Margie would want that and focus on taking care of myself. They also told me that it is patients like Margie and me that make their jobs have purpose, motivation, and even joy. There were nurses who cried with me and wouldn’t let me go. Others joked with me as we talked about the dynamic duo cousins -Margie and me. Also, the fact that we got in trouble for being too loud or happy!  The staff was also equally impacted by Margie’s passing. I also learned that I am famous again. My case was the exciting tumor board case. My doc was practically skipping and smiling ear to ear talking about my low dose weekly chemo which is out of the norm and in a new adventure of treatment. Maybe, this will help others instead of the same one size fits all approach. My fellow doctor who was in my 12 hour surgery commented about my fame. Hey, anything to brighten the days of these docs who work so hard for all their patients. The scientists from the Clearity Foundation are equally excited and explained they will always be in my corner until I get a remission from this disease. They told me I inspire them and motivate them too! All in all with all, the sadness comes a positive motivation for tomorrow. Margie would be proud.

The ride continues as it always does. There cannot be any complacency in my cancer job. Once you think of tomorrow too long, cancer decides to slap you in the face. My tumor marker went up just to mess with us. UCLA’s lab is normally lower than Hoag so the talk of a lab discrepancy gives me zero reassurance. My rock star Jim goes into full speed ahead as he hugs me and tells me he will do everything to find me some time off from the cancer craziness. He spends every free waking and even sleeping moment researching and reaching out to scientists. He keeps this info to himself to not stress me out, but expresses to me his absolute love and devotion that no one can fully appreciate unless you see him in action.  He will not stop and this is what comforts me to live each day to the fullest and stay strong. He is my rock. When I melted down with the news of y tumor marker, my boys told me to focus on how I am feeling now which is a ton better than last summer and just focus on today. Alex kept repeating, “Mom, stay strong and stay positive.” My pity party was short lived as Alex had me focus on our garage sale preparations.

Our garage sale was organized with the help of Tiffany who is queen of multi-tasking and organization. Alex reminded me of this daily when I added my two cents. His comment was that he would just ask Tiffany because I didn’t really know what I was doing. He also told me that he watches enough HGTV to know how to prepare for a garage sale. Lastly, he decided to do his top ten reasons for the breakdown of funds which was 1/3 to charities, 1/3 to his expenses for his mitzvah project for his bar mitzvah, and 1/3 to keep. He changed his mind on the charities which are now the Jessie Rees foundation and the best Ovarian cancer organization dedicated to research which so far may be the OCRF. We also talked about giving the half of our third to South County Outreach since he reminded me that $40 can feed a family of four for a week through SOC. The best was watching him get up with me at 5:30, follow his diagram for “display” and watching him “sell”. His buy a thing get something free goes back to the desk sale of elementary school because he says everyone likes something for free and they may buy more if you give them something. Our garage was nonstop and I stopped to listen of the woes of families, the ailments of people (if they only knew who they were talking to), and talked at great length to parents who were buying books or children who discussed their favorite books. It reminded me of the book fair days, but most of all it reminded me the joy in talking to a stranger. For a moment, I could forget about my own “ride” and focus on their problems big and small. I kept my distance and touched no one (no shaking of hands etc…) and I cannot tell you how fun the morning was. Plus, hangin out with my neighbors is also the best medicine and just reminds me that this is what summer is about.

What came next was the star gazing at UCI with hopes of seeing Saturn and the rings, but the marine layer was following us in our car to UCI. We picked up two of Alex’s friends and established that we are “cool” and wouldn’t listen to their conversations even though we did. There was constant laughter as we glimpsed into the world of a tween boy. We had the best time despite the cloudiness and no visibility to see anything but a great view of Newport and Irvine. The UCI Visitor programs are free and filled with families, astronomers, college students, professors and the unusual strange gnome like people who have an usual odor of not bathing. Besides the professor’s lecture losing most of us which covered dark energy, the speed of your body falling out of the plane, bending light (lost me on this one), and GR (cool way of talking about gravity) and the radius of the earth in KM. I told Alex and his friends I felt an algebra problem coming on, but told them to go adventure around with flashlights in the darkness. I heard their laughter in the distance. Once all was done, we took the walk to the shuttle bus and visited the community center where we witnessed a disco dancing wedding party and an encounter with some lost boy scouts. The laughter continued as we decided that it would be worth another visit for the Perseid showers in August even if we are surrounded by marine layer. Who knows what adventure we would have with stinky gnomes, disco dancers, professor lecture, and walks in the pitch dark with flash lights.

So I will approach each day as I usually do with my philosophy of one day at a time. I will try to avoid the PP (pity party) and continue to make the most of every day. Enjoy your summer as August approaches…it isn’t over yet!

 

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“We’ve come too far to give up who we are, So let’s raise the bar and our cups to the stars.” Daft Punk Get Lucky

July 21, 2013
It is raining hair and my eyebrows are almost gone. Without eyelashes and nose hairs, things get into different spaces since those tiny hairs are not there to protect the areas. I am now constantly blinking and covering my nose as if it is winter weather here. I am so thankful to be alive, but understand that getting ready is not an easy task. In addition to my new routine, I have the breathing treatments to deal with, so there is no quick exit out of the house. If you see me without a hat, without eyebrows, or with only one eyebrow, just try to not look so shocked. I am never high maintenance when it comes to getting ready and with so little free time, I tend to miss part of the beautification process.

My conversation prior to chemo with one of the charge nurses went very well the day before chemo. I had to make every effort to prevent any additional stress if possible. For example, I want my results of all my tests as I am “in charge” of my treatment (well kind of), and I know how to get the reports if I need them.They’re mine. Yes, I realize that not all patients are like this and some docs don’t have a partnership with their patients and some patients rely solely on the decisions of their doctors taking a passive role. This is all fine, but this does not work for me. I promised and crossed my heart not to freak out with seeing the results. I have been there so many times and felt the fear so many times that I care to remember. We are on a good trend, but this is not reason to be complacent. Now is the time for planning as we know from docs that the long term efficacy of the drugs has an hour glass where the sand runs out eventually according to their studies. Since we are in uncharted area, we have to reach out. We have to reach out far to scientists who have been such a big help and are so kind. We now have to reach out to the actual drug companies. You can do this…anyone can, but the trick is finding the right person. This is where the scientists can be helpful. So, next week before my visit to UCLA for chemo, I hope to find THE PERSON who may have some answers for drug dosage going forward.
Chemo went fine and even without Jim, it seemed to be okay. There was a cell mate who was bald and looked pretty down. When I heard her story, I realized why. It was a long and sad story. Cancer after cancer and surgery after surgery…luckily, I had my substitute driver and friend who made some pretty good jokes once I admitted to bringing my packed lunch for chemo camp. She offered to come back with a hibachi, s’mores kit, and friendship bracelets. This broke the ice and I thought of my cousin Margie who I would normally share these stories with, only she is now gone. My heart still hurts so much and cannot believe she is gone. My chemo drug was done too fast since my primary nurse was at lunch. I missed the administration and did not look at the clock, write down the time. I started getting a wave of nausea. Luckily, I had my drugs, but I was angry that I missed my clues to get things done right.
I also reached out to the American Cancer society for the beautification classes, but realized after a minute or 2 that everyone who talks to a patient must be convinced that the patient isn’t ready to jump out the window. Yes, it does seem strange that after 3 years, I would like to get some help with makeup now that I am again missing eyebrows and eyelashes. I did try before, but these classes are never offered on the right day or time. Now, there is one, so pencil me in. First, I had to answer the series of questions and I guess it didn’t help that I told the person that my skin color was greenish gray. I realized that to get my special appointment, I had to act more “cancer like” or possibly fake cry. I tried the whimpering sounds, but I only sounded like I was coughing. Finally, I passed the test.
With the June gloom happening in July (almost August), I am enjoying this weather a lot and taking advantage of my free moments to make the most of the summer time. I like waking up and having the luxury of time to play some jokes on Alex. One morning I greeted him with a spock wig and ears telling him of a new pneumonia side effect. Another morning, I played “light’em up” by Fall Out Boys and did a combination of interpretative dance and my good ole’ Club Med tambourine dance sans a tambourine. Alex is now convinced I am weirder than normal. His rolling of eyes is something fun to see on a daily basis. I hope you are enjoying summertime too!

“On and on the rain will fall, Like tears from a star ,like tears from a star, On and on the rain will say, How fragile we are how fragile we are…” Sting

July 16, 2013

When you are limited to only outdoor activities without a lot of people, you have to be creative of you want to go anywhere. Luckily we live in So Cal where the outdoors has much to offer. I am now on semi lockdown which is better than full lockdown. Friday was an awful day all around and a visit to the pulmonary doc who was almost 2 hours behind schedule is not such a fun Friday activity. After careful examination, he declared that even though I sounded better, I am not normal. I took that as a compliment, but he was actually referring to my lungs which still have fluid in them. My new symptom of exercise induced asthma is just one more side effect of pneumonia. Plus, the exercise I am now talking about is just plain old walking. Besides asking me a zillion questions (no wonder he is the busiest pulmonary doc in the OC), I realized again that I blocked out how bad I really was just a short time ago. Yes, I can now breathe and talk and make it through the night without a breathing treatment. I am now down to 3 or 4 treatments a day plus inhalers twice a day. Yes, I can talk without gasping for air. Yes, I am staying out of crowds. He explained how pneumonia with cancer is a difficult thing for a body. The body fights the pneumonia to a new normal state of breathing with assistance and then goes on to fight the cancer. It is a lot for the body to handle, so this will take 3 more months. WHAT? Yes, 3 more months as we need the fluid to clear up and I need to continue to go in the right direction. So, no summer movies for me and no groceries and no elevators if possible, no mass crowds body to body where I am mushed in a crowd-this is semi-lockdown. Take care of my body he begs me. He gives me some more inhalers to and one for exercise or walking. It seems like I will need a new accessory bag to carry the nebulizer and all these new inhalers. Oh, another online shopping experience awaits.

Speaking of shopping on a side note, my new favorite Laguna Beach shop is Laguna Buy Hand on PCH. They have one of a kind jewelry and accessories all made by local artists. If I had a dog, they have some cute accessories for dogs too. Of course, I love the necklaces and bracelets. My favorite new item is the Buddha candle. Besides smelling amazing and able to rid a room of any tween boy body odor, I love the Buddha’s face and look of the candle. Plus, when I decided I needed more Buddha, I called the store to have them mail some to me and the owner delivered them to me. I didn’t even have to use the cancer card!!!

Of course, this weekend was a difficult one. My sadness was so deep that I was having a difficult time breaking free from it. So, on Sunday when I went to bed and noticed my vision was blurry, I thought it was from all the crying and fatigue. I took the new inhaler which I’m convinced is designed by an artist. It could be used in public as it is such a cool design if only it came in a choice of colors. I noticed while watching the news that my vision was blurred again after inhaling the puffs of medicine. I decided not to freak out since Jim is gone and I must drive Alex, but to start the calls and emails to the doc. I read the side effects online and decided to stop the medication immediately. I noticed that the new drug was not working well and I was back to the tight chest and slight gasping for air too soon after a breathing treatment. I was convinced to solve this problem on my own so Jim could do his job without more worries. I would have a solution by dinner time. So, I did. Doctor phoned me and pharmacy called me. Back to new routine, I begin the revised road to recovery of pneumonia while having cancer.

My Alex has been such a big help to me while Jim is gone. He has always been an old soul even Margie always commented about that. He would look at me throughout the day and say, “you’re sad and thinking about Margie.” As much as I hid my feelings behind my smile, he knew what I was thinking. He brought me some ice water and told me to do his breathing technique and listen to musical I could relax. Between the breathing issues and mental issues, I was wiped out for the night. Alex saw I fell asleep with the tv on, turned it off, turned on some music, kissed my forehead, and told me he loved me. I was too tired to move, but he understood. On his way out of my room, he told me about his online game and that one of the users had their user name as “cancer sucks”. Right before he left the room, he said, “I’m changing my user name to Cancer sucks 2”. My heart hurt, but I was too tired to really feel the pain.

Tomorrow I am off to chemo again and will place a call to Hoag so I don’t have a repeat of last time. I know I don’t have the energy or strength to deal with incompetence. I need a nurse who knows what they are doing and won’t question the doctor’s orders and other paper trail errors and actually administer the chemo as prescribed.

Today I am off to Cal State Fullerton to take Alex to Barry Perkins trumpet academy. This is such a great opportunity. There seemed to be mostly college and high school students. The sound was phenomenal and Alex told me there are music teachers learning too. Nothing can be better than a trumpeting fanfare as I felt like any minute the queen will be arriving.  I closed my eyes and I was back living in England. Yummy biscuits and scones! Back to reality, I will be finding my fun today and hope you find yours.

 

 

 

Tribute to my cousin, Margie Shane

July 14, 2013

Some of you had met my cousin Margie Shane. She was a hero to me in how she lived and how she lived with cancer. She was an artist, a writer, a performer, an entertainer, and an independent strong woman. In Bernie Siegel’s book, Faith, hope, and healing: inspiring lessons learned from people living with cancer, Bernie calls Margie an Exceptional Cancer Patient (ECaP).  It takes a special person to not project feelings onto other cancer patients or tell a person what surgeon is best for her or not share her opinion on what is the best way to live with cancer or survive chemo. Margie was exceptional in so many other ways. She allowed me to find out on my own what the best way for me is to live with cancer. I have failed her because I so desperately want to save everyone from the pain of cancer or not make the same mistakes I did. Margie realized that each person has their own destiny, their own way of living with cancer. She respected mine as I continue to honor, respect, and admire hers. She was a true hero. I never realized what she was showing me along the way. I was too busy enjoying my ride with her. She was correct in teaching me that cancer is a personal journey and the path we take in life is neither right nor wrong. The journey is individual and personal.

Cancer sucks. Cancer takes over without a moment notice. Too often the cancer wins the fight not only against the patient, but against the doctor.  The last time I talked to Margie, only a couple of weeks ago, she was so full of hope. We laughed as usual and talked about her fears. I reassured her in every way I could. She told me she was in liver failure. I told her I already knew. How did I know she asked? I told her when I was in Waikiki and my tumor marker came back as 1500, we sent an email to my doc asking what the warning signs would be of the situation getting worse. I wasn’t feeling like I normally did, so our guess was that my cancer was around the liver. He meticulously explained the symptoms leading up to liver failure and what to look out for. Margie had already told me she had these symptoms. I felt strongly that she could come back from this. Her “bitches” (tumors in her liver) refused to cooperate from her initial diagnosis. While I had chemo, she had chemo and she had radiation. She faced all of her treatment as an independent woman. Of course, she had friends who always rallied beside her, but she came home without an Alex or Jim helping her eat or making her bed. She had incredible strength. She had incredible spirit and the ability to laugh at a horrible situation. She was an ECap!

Now Margie and I go back to days before being cancer soul sisters. We were cousins first. I remember meals with her mom and dad and visits to Florida to see her parents and they would say, “You are so like Margie in your humor and mannerisms”. Her dad calls me J.D. For Joan Debra and he would continually tell me, “J.D., that is what Margie would do”.

What Margie did for me is immeasurable in words or emotions. Margie saved my life. When I was in my total crisis of finding a surgeon in a week when I needed to have a Debulking surgery she jumped to our rescue and stood by our side. I can see it like it was yesterday. She gave us names without giving her opinion, but we all came to the same conclusion. She took notes and we laughed. We laughed at the exam that almost removed my ovaries by the hands of a surgeon doing a gyno exam. We had lunch and laughed some more. She found humor in every ounce of these encounters since she knew what awaited me, but never said. She did this all while undergoing her own treatment. She helped me to find the best surgeon for me. Now, if you asked her an opinion about a doctor, she gave it to you. She allowed you to find your own answers, but was along for the ride by providing love, support, and humor in a very bad situation. During my 12 hour surgery, she sat in the waiting room with my mom and Jim and took shifts. She entertained Alex. She never left my side and I was in the hospital for a week while she was undergoing chemo and blood transfusions and scans. My days were fuzzy, but I remember her sitting on the sofa in my hospital room comforting me. When I was in pain, she encouraged me to get through it.  When I started chemo, she came to every appointment. She even stood in the “closet” for 7 hours because there weren’t enough chairs in the old closet. She was my voice when I had none or was too drugged to make a comment that made sense especially when Jim had to work. She understood firsthand what I was going through and never let me understand the horrible nature of this disease. She always had hope and strength. She had enough for the 3 of us. When Jim had to take a call since he has yet to miss more than 2 chemos in 3 nonstop fun years, Margie wouldn’t leave my side. We would laugh at chemo and don’t ask me why. We had stalkers and Debby downers and just plain ole pity party patients in the “closet”. We got in trouble a lot, for acting out a Saturday Night live sketch in the closet both old and new. We got in trouble for just laughing at the annoying side effects of chemo including the hair loss. Margie gave me the best cancer books and bought me some of my favorite t-shirts. I have many special photos of us in the chemo closet. We both have our wigs on and she is wearing one t-shirt which we both have and I still wear which says “breathe” and another that says, “wish”.  In between the good and bad days of chemo side effects for both of us, we had some fun meals out in the city. Our favorite time was when she came to Laguna to be with the entire family. The kids put on shows and we enjoyed every minute.

The chemo closet was our stage and our audience. The nurses were our biggest fans and the doctors couldn’t quite figure us out. They would usually say, “What a pair” or just smile. I know we puzzled them whether it was the fighting Bader (her mom and my grandma’s maiden name) spirit since all Bader women are tough women or just our will and motivation to survive. Her doctor really loved her and all the nurses did too. I know they knew what was really happening with Margie. They never told me, but their sense of urgency for us to connect and the look in their eyes spoke volumes. They know because they have seen the path of this disease over and over again. When I think back, I think they had this look when I saw them back when my tumor marker was over 1500 and I had cancer all over my abdomen. I have always said that Cancer is a selfish disease. During this past year, Margie and I lost our physical connection to each other in our fight to survive. I was dealing with little options left to try (still am) and she was dealing with those bitch liver aliens causing her ascites and pain. So when I arrived at chemo at UCLA back in June and one of our nurses who was “our first” for both of us urged me to call or write Margie, I did.  Since the damn pneumonia happened, I wasn’t talking much those days. This nurse was insistent and told Jim to call if I couldn’t talk. I called her at the beginning of June even though I wasn’t supposed to talk because I couldn’t breathe. Margie had asked if I ran up the stairs since I sounded so winded. I told her it was the nature of the beast, pneumonia. We talked a long time about me losing touch and being on the island to survive, dumb tv shows that we still watch, what the doctors said and didn’t say, and our fears. I was angry with the disease and myself for not connecting with her sooner as she had been there for me every step of the way. I was determined despite doctor’s orders to not talk on the phone, to call her every week and every day. I left her messages which only she and I would find funny. We did briefly talk of the “what ifs” and island you only want to visit briefly as we were against the Debby downers and pity party patients. I told her how much she meant to me and my family. She had shown me how to fight this disease with strength, determination, grace, and a lot of humor. She was the true sunshine as she knew and understood the evilness of this disease. How she fought this disease as such an independent woman and showed strength that was unmatched and misunderstood by many. She never lost hope even when facing her fears. She would want me to stay fighting and keep laughing. I cannot believe she is gone. My heart breaks as I read what she wrote to me.

Here are some of her words to me:

“You’re strong and your fighting spirit will take you far. I BELIEVE in you, love you. After you read this you’ll start to see how often God winks at you.”

“Whenever I’ve gotten discouraged or a little blue, I come back to the teachings of this book. (The Triumphant Patient by Greg Anderson)

I believe you’re strong without a doubt. Keep doing whatever you’re doing. You’re amazing!!! I know we’re going to be old ladies talking about this in 30 years as part of our past…just another bump in the road of life. I love you. Margie”

“Here’s another inspirational book (There’s No Place Like Hope, Vicki Girard) I want to share with you, I stumbled upon it and am reading it now. Your wonderful attitude will continue to help you heal and HOPE!!!

There’s a lot of hope to go around, love you Margie”

From her chapter in the book, Faith, hope and healing by Bernie Siegel, Inspiring lessons learned from people living with cancer.

A  New Autumn by Margaret Shane,

“My once idealistic expression is more soulful and serene yet full of hope and excitement…. At times I was discouraged, sad and worried. However I decided early on that it wasn’t going to beat me, and the gifts that have come from it have far outweighed my actual illness… My faith in both god and myself deepened, I felt like a large net was holding me up, orchestrated with angels circling, taking turns to catch my fall, to help me beat back the fire when I felt it circling me. Those angels are my family, friends, fellow cancer survivors, doctors, nurses, and even strangers….Cancer is scary, but not as scary as I thought it would be…I’m sure that stubbornness and a strong will have helped me over the last four years and will continue to do so…. I see the world with different eyes…I’ve had to let go of some left brain thinking, so that I can open up more to trusting my heart and spirit. Not looking at the “shoulds” or “coulds” but what is right and true for me. I’ve had to honor and value myself like never before….fighting this disease has helped me find my passion for living fully again.”

Bernie Siegel’s reflection on Margie’s piece

“Cancer reminds me of water in the way it has the ability to reflect back certain truths to you…your body is aware of how much time you spend fighting versus nurturing yourself… When you nurture your body, mind, and soul, growth and healing occur within you, …So never stop planting and cultivating your seeds of life, though cancer may been seen as compost, remember how it helped Margaret to find her passion for living her life fully again.”

The world has lost a very special warrior, a cancer soul sister, a cousin, a friend, and my hope is today when you see some beauty in the day you say a prayer for all those fighting to survive because that is what Margie would have wanted. Lastly, I hope you find your passion for living your life fully each and every day. Margie always did that and taught me to do the same. As we say in Hebrew, L’Chaim-To Life!

 

“Hope is a powerfulul weapon and (one) no one power on earth can deprive you of.” Nelson Mandela

July 6, 2013

Wednesday was chemo camp day. I packed Jim and I a brown bag lunch ready to face another treatment. While I was trying to convince Jim that by now after all these treatments, we shouldn’t worry about things not going right, he was correct in his prediction as usual. With some last minute treats baked, I was hoping not to be placed among the vampires (blood transfusion). There is something gross about seeing all that blood especially when you are not getting some yourself. It affects your appetite even if you don’t have any. It worked and I had a room to myself. The saga began and I never understood why basic communication was not a key part of training in the world of cancer centers. We are a trapped audience awaiting a poison and some key components of compassion and care were missing. I wrote down the time of my arrival to my room. I was hoping that someone would tell me who my nurse was. No luck there. Unlike UCLA, you are on your own at Hoag unless you are contagious and get your own giant room. There really isn’t a place for a visitor. In past conversations with nurses there, they agreed that this is not a good set up. There are days when I can speak for myself, but other days which I was consumed by pain that I needed another brain and voice. The minutes passed and now we were in the 20 minutes without a nurse visit. I saw the nurses’ station from my cave and heard my name mentioned. I saw a nurse who was waving a paper around and stated she was concerned with starting my treatment since I didn’t have a room number assigned. Ugh. Guess no one cared that I was still sitting alone and waiting. Finally, the nurse appeared and opened my chart as if it was the first time seeing the information. I was thinking to myself that it would have made me feel more comfortable if she had reviewed this prior to entering the room (only she was concerned about my missing room number). The countdown began (I started calculating the time we had before Jim had to take Alex to his band workshop practice session in Mission Viejo) and I realized that the debate had to be over. This was the debate on what number cycle of treatment this was. I told the nurse it really didn’t matter since I would be on the treatment until it stopped working. There was no end date on the order for a reason. This was extremely confusing for her. She continued to start the counting again. I finally used my “mean voice” and told her we could figure this out later, but needed to run the blood test first. I thought about getting Jim but understood he has been on non-stop calls for work, so I began to deep breathe. I used the meditation breaths that I used with Alex and instead of his mantra, I kept saying, “I will get chemo, I will get chemo….” She finally agreed. Now, my chemo is a blood eating, cancer eating toxin. It eats all blood cells and there was no solution last time I was on this drug in 2011, but to get ongoing blood transfusions. I did my bone broth all last week (a coffee cup of broth one or two times a day). She returned with the results questioning them since it is a known fact about the blood and this chemo. My platelets went up 10 points and the rest only went down a few points. This was unheard of, but she wasn’t the nurse who believed in the bone broth idea, so I decided to not waste my energy and focused on getting the chemo. I explained the timing of my exit. Alex had to be on time and didn’t want to miss the band event. We had never seen him so excited about band. As he said, he learned more in one day than he did all year. (Thanks Valerie Robbins/Dan Robbins!) Then, it started with the next debate. Are you kidding me? The order for my chemo is a prescription. There is a reason one drug is first and yes, Jim could explain this reason, but he is working!  Was it really important for this nurse to understand instead of just giving me the friggin right drug first? She began to explain her understanding of the drug and the pharmacist understanding. I could have cared less and all this time I had been getting the drugs in the order as prescribed. So, I was confused about this argument. Was this making it easier for the nurse or pharmacist OR was it because it was something that she didn’t understand and was the type of nurse who had to know the facts before administering? Either way, follow the prescription…por favor! She didn’t give me the wrong drug first, but still had to tell me she was right based on her knowledge. I tossed out the charge nurse name to stop this debate. It almost worked. Then, we started again with the number of cycle debate. My meditation breathing began again. Yikes! I thought to myself does this have to be so difficult. I looked around the cave and felt confident in my ability to continue this countdown. Again, I did think, what happens to those who don’t have the strength? After the continued debate about the cycles ended, I got the correct chemo first. Jim sent me a text and I responded that I would be done in 20 minutes. My IV alarm started ringing indicating it was finished. Minutes passed and no nurse. Jim entered the nurse station to find 4 nurses who were sitting. He asked if someone could “unhook me”. One of my favorite nurses insisted that she could do this since my nurse was with a patient (probably debating another patient). At last I was free! The next days began the fatigue and nausea which I blocked out from the last time. Guess this was the way to go like childbirth. All side effects blocked out: the extreme pain in my legs (one drug), the nausea (both drugs), and the fatigue (both drugs). There are drugs for all, so I began my process. Now with my tumor marker going down a teeny bit, my request for one week off is accepted. My ability to tolerate these drugs long term has to be considered, so docs agreed to have one week off. Otherwise, the continued hit to my bone marrow would put me in a scary place. This one week off would give me the best chance of staying on the drugs as long as possible. Once again, being your own advocate is critical in living with cancer or any other ailment. I am now realizing again that without the constant pain of cancer growing, I am able to reflect upon feelings and gain new insight into living with cancer as it affects Alex, Jim and those who surround me. Time becomes even more valuable. I continue to seize each moment with less cancer with such drive and determination that I refuse to let anyone stop my desire to maximize every moment (of course, safety first until I see pulmonary doc on Friday).

Hope you are seizing the day and your moments!

Today is now. Make the most of your day!

 

Down, down, down….

July 1, 2013

Experiencing such joy this past week has brought me to tears. Although I am still in full quarantine and not allowed among the party crowd, there is something to be said for watching my nephew, Max and Alex run back and forth smiling and laughing. Walking side by side with Chloe, my niece hearing about all her acrobatic dance moves while she sings Will.i.am “Scream and Shout”, I do remember what this joy felt like. Hearing Sofia my niece sing brought goose bumps and such overwhelming feelings of pride and I realized for the first time that I am more present now than ever before. Enjoying dinner with my family, laughing with my sister, Sue and brother in law Caspar, I am filled with happiness that the replay of the day is the best medicine I have received this week. Whether it was the balancing of spoons on the nose or talks about make up, I love every minute, every second. I also realized that last year at this time, I was consumed by horrible pain and unable to fully enjoy these moments. Of course, last year I thought I was enjoying the moments with my family, but now with the tumor marker going down it is a whole new appreciation. When your body is not working double time while consumed with the toxicity and pain of cancer, you can fully enjoy the moment. Who knew? Now my old self would say, “carpe diem”, but my new self says, “Avoid the germs and say no to hospitalization from pneumonia or any other germs”. Last year at this time, the fluid buildup from cancer caused me pain and brought me the inability to sleep (only sitting up) and eat. I cannot explain how much I am enjoying the moment now compared to last year. I had no idea how awful I felt at the time because I was enjoying living just as much as today. It is different today because with less cancer I can sleep on my side, eat more than a tablespoon of food, spend less time in the bathroom, and really be present to listen, look, feel the joy of every moment of my day. Now there is the hair loss that I am dealing with once again which now proves to be more of an inconvenience than anything. I could go with Alex’s sharpie suggestion for the eyebrows, but with artistic skills being one of my weaknesses, I really don’t trust myself.

 

During this time of now not being consumed in pain while living in the moment, I have learned once again a valuable lesson. I have begun to ask for help realizing that the energy required to accomplish the simplest things is not worth the energy I need to save for enjoying my moments with my family. I have lost touch with friends and most importantly my family in struggling every day to cope with living with cancer, deal with chemo side effects, and living in pain. This isn’t going to happen again. So, I know I may have lost touch during this crazy ride, but I may be contacting you and asking for your help big and small. I appreciate you riding this ride with me and I cannot explain why I didn’t ask for more help. The typical after surgery meal delivery is what is normally done, but I am living with cancer and having weekly chemo. The needs of my family and my own needs are different in struggling to live with cancer. I realized that my needs are much more specific and even strange. I realized the need to ask for help is critical to my ongoing survival. Now that I am more present in the moment of the day, I must seize those moments and ask for help with the mundane. Yes, you know how my old self used to hate asking for help because I wanted to do it all and my new self, felt as if I was burdening those I care about with my feelings or needs which seem so silly to ask for help. All this is thrown out the window now. I am still walking in uncharted territory for me, so work with me in discovering all those little things I need help with. I know it may be difficult to understand what is going on now. I am thankful to be alive, thankful my tumor marker is going down, and thankful to be living with cancer.

 

Having my tumor marker go down, I realized that I needed to read the expert report. This is the report provided by “experts” across the country evaluating my case and giving their opinion. I received the report about a month ago and I read the first page and handed it to Jim telling him to hide this from me. This report had a cover sheet telling me that I had few options and my cancer will continue to be resistant. The report said the chemo would stop working, cancer would grow, and I should consider stopping chemo. Palliative care is what I am doing now as I know I have no standard options. We are in uncharted territory.  I refuse to accept this death sentence. I know and understand there is no cure for my cancer and the likelihood of it returning is high. I also know a lot about myself and my body. These experts are looking at me on paper and making a decision based on facts provided in the report. I took a deep breath and looked at the specifics. They were missing two key items which are all the “rage” in chemo treatment: Votrient and low dose chemo. These were both presented at the big ASCO conference in June. Either they quickly reviewed my case or didn’t give it the attention it deserved or really could not think outside the box. I did review their other suggestions which we had already talked to my UCLA doc about. I decided there is something to be said for meeting a doc face to face. There is also something to be said for keeping your hope, your motivation, and your purpose for living. These experts made no mention of my husband, son, family, or friends. These are pieces of me which motivate me to face another chemo each week. My drive and desire to stay alive cannot be measured or even comprehended unless you know me. I think back to the expert at Cedars who shook his head in disbelief when he read and counted the number of chemo treatments, reviewed my current blood work, and looked at my face. He acknowledged that I did not look like a cancer patient. Now, there are days without make up when the gray pastiness creeps out of the makeup, but I have convinced myself even in my worse days that I am a wife, mom, sister, daughter, and a friend and not just a cancer patient.

 

As a new friend and fellow warrior said, “you have a powerful name and I can see you are riding the ‘F-in’ wave and refusing to give up.” This is true and we are more than just what reads on a paper. I am lucky to have a team of doctors, nurses, and scientists who understand me as a person instead of just a cancer patient. So, I will continue to enjoy these new moments as much as I can. I cannot think about the tomorrows, but only today. I will enjoy the sunshine (still with a mask in crowds) and my countdown to freedom from pneumonia continues. ENJOY THE SUMMER FUN!