Archive for May, 2012

Cancer cells gone wild and goin’ rogue….

May 31, 2012

Basically, the story is too long to repeat, but we will have to see what the tumor marker does tomorrow. If it is rising faster, then off of this chemo and back to the original one I started in April 2010 for one more try and adding another chemo too that is newer. The new one is not proven for any of my cancers and is used to treat  pancreatic or renal cancer. My broken genes are the problem. It is as if I am driving a car without brakes and pushing the gas pedal to the floor. Those are my personal crazy cancer cells which are resistant to chemo. They like the taste at first, but then decide to go crazy and not respond. There isn’t an easy answer especially when going rogue living with cancer.  It is basically just a roll of the dice with the varieties of side effects thrown in for more fun.  I think I have had most of them, so will just go back to my notes and start the crazy ride again. Half of me wants to scream at the top of my lungs, but the other half just is rolling my eyes at this whole process. Just as I am juggling the thought of taking off my wig for the summer, there may be the possibility of back to the art skills of drawing on my eyebrows.  All I care about is feeling as “good” as I feel now for the cruise in July. There is no compromising. I will go on the cruise to Greece, Turkey, Croatia, and Italy. I will feel good and I will enjoy every minute of it. My body has been wonderful in cooperating, so I am assuming it will follow my direct orders. There is nothing much more to do for today, so I will rest and freeze my feet for sleep. By the way, the dermatologist came up with one more cream and said, “ice, cream, and go”. Sounded like a dessert, so I am ready to give it a try.

Advertisements

“Show them what it means to be brave in the face of difficulties; let them see you accomplishing tasks that you would rather not do at all. Teach them that it is okay to be sad sometimes, but that “sad” doesn’t mean defeated…The way in which you handle your battles can provide them with a gleaming suit of armor for theirs.” Vicki Girard

May 30, 2012

Waiting for my doctor to return from Canada, Jim and I have been compiling a list of strategies. I really should say that my rock star husband comes up with the strategies and I just pass them off as if they are mine. This way, my doctors think I am a fake doctor. Honestly, they do listen. When I feel strongly about the next steps, I tend to re-phrase the medical lingo and add my compassionate twist. My focus has always been (about everything) being proactive instead of reactive. I am a planner and an organizer! Just ask anyone! With my recent blood tests, my tumor marker seems to be back on the rise. I am thankful that it hasn’t gone sky high, but has definitely stopped the sharp decline. My doctor did reduce the dosage because of my mouth sores and hand and foot syndrome. I cannot imagine it being any worse as far as my feet go. This has become just one more thing for me to plan. To walk or not to walk, that is the constant question. Besides being a reptile and slightly uncomfortable (okay some days worse than others), I am finding that the handicap placard comes in handy. The fewer steps I take during the visits to Walgreens to pick up drugs or the grocery will help for an evening of standing for a performance or a walk that I pledged to do with Alex (even though he ran the “walk”).

So,my ride continues. This news came on the day that I had to take Alex to an award dinner that he received for his community service. Things do work in strange ways. I really thought to myself, how can I be there for Alex when my heart hurts and my damn feet hurt from this chemo that may not be working. The award is for kids who make a difference in our community and is named for Savannah, an angel who continues to make a difference in many lives with her legacy for organic living. We were seated at the table with another award winner, a boy of 15 who is a cancer warrior. I kept hearing him speak to his mother in Dutch (our favorite 2nd language-okay, we are biased because of family!). I asked them about where they had lived in Holland and we talked about all things Dutch. Then, this boy told me the drugs he took and how he was in a wheelchair during treatment. Yes, he was on the same drug that I am taking. YIKES! He kept making me laugh about his treatment and people reacting to his cancer. He has an incredible attitude. His message gave me strength to be in the moment. Alex enjoyed the entire evening. Many people had congratulated me for being Aliso Viejo Mom of the year since there was an article in the local website for our city. I laughed and told some that people better not mess with the mom of the year. Although as usual, some people still have the same delightful demeanor of their EV (emotional vampire-NESS) that you would have to be Bella from the Twilight books to withstand the exposure.

Alex really is son of the year. I have always looked online for someone who is blogging or has some award winning comments about what it is to be a child of a parent who has cancer. I have found nothing. No one can understand it, but many do show compassion and help him to succeed in every way they possibly can. As the saying goes, it does take a village. My village watches over Alex and is there to hold his hand, listen to him, make him laugh, let him sit in silence, catch a ball, get dirty, and just be a boy without thinking about all that weighs heavily on his shoulders. There isn’t a comparison or guide book as each child is so unique in how they will react. He hears too much and knows too much and I can only tell him that we will be okay. We will be okay because he has a village. I appreciate every person who has helped in even the slightest way.  Any small thing taken off my “to do” list helps me in more ways than you can imagine. I am always reminded that you cannot change people. There are those who cannot get “it” or can barely understand in the slightest what we go through on a day to day basis. Yes, these are the ones who tell me of a woman who died from cancer  or that being a child of cancer is like being a child of divorce. I can tell you right now if you asked Alex, he would take divorce if it meant  his mom never would have cancer again. I cannot blame someone for not understanding, but I can still be in the shock and awe of someone not having the compassion that I expect. Tilt your head, if you want. I don’t care because at least it shows me that you are trying. I have enough challenges every day living in my clogs (not shoes since they hurt my feet and yes, I have to look like a complete dork and wear socks. Thanks to all of you for your kindness who said I can get away with this “look”). This ride is frustrating and annoying ( a real big annoyance). This is my life and I have no other options, but to continue my cancer job even though the pay sucks and the vacation time is not nearly enough.

Tomorrow, I will talk to my doctor for my 3 options. I want to increase my dosage back to the old dosage unless my tumor marker doubles. If it doubles on Thursday, then I need another chemo choice. There are options to add other drugs to this chemo. Plus, with the big ASCO (American Society of Clinical Oncologist) conference just days away, there is hope of new drugs or new trials.

So, I am on countdown to chemo again on the 6th. This means that I will be doing everything and anything fun during the days preceding the closet day. Yes, this means I will freeze my feet with ice, so I can be out an about. If you see me and I have a strange look on my face, just know that my lizard feet are frozen so I will be increasing my lack of coordination in the walking department. Yes, I was never that coordinated to begin with…so watch out.

 

“Then I remember to stop thinking. I remember that today is just today and that is all that it is. I take a deep breath in and I realize that in this moment I am fine and everything is okay.” Max Greenfield.

May 21, 2012

It is amazing when you have a motivation for getting over your side effects quickly. My motivation was to be at the book fair which I have organized with an incredible group of women each year. My first days were a bit shaky as my body wasn’t following my mind. Despite my new routine with electrolyte water, my body craved rest and my fog was too much to face the group. I fought on and by Tuesday I was seeing the light even though my teammates were forever translating my half sentences like a game of charades for a day or 2. They laughed with me and not at me and protected me. Their care and kindness was like a giant invisible hug on a minute by minute basis. Their smiles encouraged me, their trips for emergency lunch delivery kept me nourished, and their knowing nods of acceptance allowed me to illogically continue my strange pace. What brought me the most joy was seeing the students of the Jr crew ( students working at the book fair) on a daily basis. These 4th and 5th graders took their job seriously and often I would think they were much better at helping than some parents. Their honesty, commitment, and dedication (giving up a week of recess) were impressive. Of course, there were some hic ups and one (only one) entitled child who blatantly lied to my face, but the 33 others were amazing. This was on the job training and I had so many conversations with them about this being a real job. They all knew it as a fun experience, but they learned real life math and business skills without really seeing it as such. I also had some very real conversations about what was bothering them like their fears or anxieties and what made them have the best day ever. I cannot explain how wonderful this made me feel as I wanted them to not only have this experience, but selfishly instill in them my hope, my confidence in them, and some coping skills.

Having my mini vacation from cancer was short lived as the reality of Thursday’s blood test came too fast. The one time (I know I have said this before ) that I put my faith in the hands of a process that had been working since February I was faced with the reality that you cannot take a break from the job. It was a disaster, my usual front registration team absent and I was faced with the original idiot who could barely do one task at a time. She proceeded to completely make my order into a mess. Luckily, my dear blood drawing lab manager and favorite employee came to the rescue. When it takes 4 people to fix the order, I think it is a sign that this woman should not work in registration. Of course, the mess up continued with the results. Eventually back on my cancer job, I got it all fixed. I should have known what happened prior to entering the hospital was a big SIGN! When I entered the hospital, I seemed to be feeling a lot of air from my behind area. I was wearing a lace top with tank underneath, but wondered why the air was blowing coolly on my bottom. As I almost entered the hospital that morning, I realized that my skirt had fallen to my ankles because if forgot to tie the waistband. Glad I didn’t follow the nudist approach recommended to control the blistering side effect and I was even happier that the lab manger was behind me. She later commented that she was hoping I would realize before I entered the hospital. This was worse than a tuck in of a skirt into the underwear. Typical Joanie.

My results proved to be “safe” for me to be out in public, but I should avoid the coughing and spitting children. My tumor marker stayed the same as the week before, so we will see what happens next week. Of course, being on my feet despite my lotions and potions did not help the blistering reptile feet. Oh well, the price I pay for freedom.  My cancer job begins again next week as I have several doctor appointments.

My other blood tests came back, but I am not sure what it really says except that I am more broken and not sure if the doctors have any ideas. This will be my next project especially since there is the big conference in June and I need them to be thinking of me when shopping the new drugs. The tests show that based on all this, my cancer will not go away and ongoing chemo may be my job. So it may seem that I may not get the vacation from my cancer job that I always dreamed about, but I still have hope and my thoughts are that if they don’t fully understand my broken genes or these blood test results showing my broken immune system that they cannot know. If they had answers, would I still be on chemo for over 2 years now. I must think like this and continue to focus on each day. I cannot worry about what is not in my control (. And you shouldn’t either). We can only be in the now and enjoy each day, each hour. Having lizard feet is not helping my moments of walking around the town. Of course, this ride is a crazy one, but it is my way of dealing with my cancer job.  As Jessie Rees’ philosophy is NEGU, never ever give up, I plan on following her inspiration as I continue this journey.

 

Confessions of a chemo centerfold

May 15, 2012

I have always been in the range of a low maintenance type of gal. Cancer is so high maintenance. Now, I really understand why some women choose to do the scarf look or just the bald look with no eyebrows. This has never been an option for me. I am thrilled to have eyebrows now and eyelashes, but this routine has been replaced by my lotions and gauze and rinse routine. It used to be about the pills and potions. This has taken a turn in the wrong direction. Of course, my hair is starting to grow back without the same color or texture which makes me think that the wig look will be my look for a while even though Alex has put a firm limit on not exiting the house without the wig for at least a year. There is no hope for my feet or ankles or toes. YECH! Yesterday, I had the surprise for mother’s day while putting on my bra. Who knew this chemo causes this blistering peeling everywhere there may be contact of friction in some way. I decided to add my lotion routine to more areas, and started really examining my body. I noticed that this strange scaling lizard like shedding was happening in many places. I had Jim start researching. He confirmed what I already realized. This was lizard skin disease caused by my chemo. The only solution would be either to add more lotion to my routine or start living on a nudist colony. Another option could be the no undergarment prescription. This would really go over well with 5th graders in computer lab. I told Jim that I would definitely need a boob job or maybe a butt job or just a new job after this cancer job. If Alex was worrying about me exiting the house without hair, what would he think of his mom exiting the house without clothes. I am making a plea out there to all the brilliant scientists. I realize the cure to cancer is really difficult, but can you come up with a chemo that doesn’t make you nauseous, doesn’t make your hair fall out, and doesn’t make you grow lizard skin. I am just asking  for a drug that does not cause baldness, and force patients to go braless. Is this too much to ask? Finally, I understand why many cancer patients don’t exit the house. Isn’t it enough to have this cancer job with absolutely no benefits and added pain and suffering? My only solution is to seek one of those make up artists from the sci fi channel and ask them to apply a full body lizard make up and pose for either the centerfold of some strange magazine or create a full lizard body image to send a message to drug companies. All I can say is that thank goodness I don’t have any friction causing folds of skin on my face or I would really look like a reptile. Yes, it could be worse. I guess I better start my nightly routine before I fall asleep in the tub of lotion. There is nothing like lubing up so much that you slide into the toilet nightly.

To answer your question about my mother’s day…I was happy to be with my boys, but not enjoying my world of living as a reptile.

“You gain strength,courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do.” Eleanor Roosevelt

May 12, 2012

I now admit that my break from weekly chemo allowed me a new perspective and a new approach to my chemo. I had a vision in mind since I had the time away from the closet. Before we left, I opened the door to see the sunshine not only from my friend, but from the loveliest Monet water lily cupcakes I had ever seen. It might have been the flash of memory of walking the grounds of Monet’s house in Giverny that allowed me to escape from what was ahead. I was determined to not allow the nausea invade my mind. I was also armed with a new weapon of electrolyte water by Trader Joes which tasted like nothing. For me, nothing is good when your taste buds have been erased from 2 years of chemo. I brought the book, “Would it kill you to stop doing that” which is a modern day look at manners. Since my cancer diagnosis, I am more aware of how people treat each other or don’t treat each other. This involves people of all ages especially the young and more often adults who lack the kindness and sensitivity towards others. It is a pretty humorous book, so it kept Jim and I laughing most of the way. With my new determination, Jim and I had a mini date in the car ride. It was our time to talk and enjoy each other as much as one can enjoy each other in traffic on the 405!

We rode the elevator to our destination holding the water lily cupcakes and boxes of donuts. A doctor asked us if we were going on vacation. I started laughing and answered, “a vacation of chemo”. Since I was laughing, he didn’t feel strange asking us if the “goods” were for buttering up he nurses. I responded that they were to thank all the wonderful staff and nurses for doing what they do every day. He must work in plastics or something that doesn’t require strength and compassion on a minute by minute basis. We entered the suite and some of the staff looked beyond me towards the cupcakes. One responded immediately, “water lillies” and others looked as if they had seen a ghost. They had tears in their eyes and then, I understood that they thought something had happened to me and responded with, “so happy to see you HERE!” I understood as I had the same thoughts of some of the friends I have made along my 2 year travel to the chemo closet. Next stop was the infusion pod center. They were equally excited, but thrilled to tell me that all my emails worked and they now have 2 volunteers in the clinic. Wow, I had only expected one!  Plus, they told me that my cousin and I were voted best patients of the year(s). We are both still wondering why we don’t have a bag of swag to prove this title. I will work on that for the next time. Swag and new art work will be my new focus. Yes, this isn’t Cedars with the donations of real Monet and Jackson Pollocks, but they have to brighten this place from the Sci Fi thriller of escape from the Lady Gaga pod city!

Damn my VIP seat is gone and now, I was left with what would be equivalent to a middle seat on an airplane. Oh well, I wasn’t going to let that ruin my vision. I had my blood taken and my nurses gathered around for my chant of ” tumor marker go DOWN, be in the 200 range!”  We were all laughing as it seemed silly, but they said, “why not”. Of course, at that very moment, in my mind I saw the Jamaican woman who took care of my Grandma chanting, “Michael row your boat ashore, hallelujah…” Only my sister can fully appreciate this image! My doctor walked in and asked to see my feet which seemed to ruin my moment of chanting. I realized based on my lotions and potions that there will not be any sandal wearing this summer, so if you know of a cute flat shoe which is comfy…email me. Yes, the hair loss, the taste buds missing, and now lizard feet. I have always had a bit of a foot phobia. Looking down at my lizard feet, I couldn’t help but gag a bit. My doctor said I was doing a great job as the sores were healing. He decided to reduce my dose to the normal amount since he would rather have me stay on this as long as possible especially since my tumor marker decided to take a downward turn. Then, he brought us a 24 page report from the new genetic testing. I was not sure how to look at this, but I saw the cover page lists 3 broken genes. This new test covers 182 genes that they know to be involved with cancer. One is very common and the other 2 less common. This is the future of cancer treatment. Instead of just taking the same ole drugs which have been around forever, this would help doctors know which drugs may or may not work. In my case, there isn’t a drug to fix my brokenness.

My tumor marker comes back just below 300 or should I say in the 200 range, so my chanting worked!? My doctor was thrilled and I gave Jim and Alex a scare when I saw the email and screamed. Mom on steroids screaming could mean 10 different things for them, but it was a scream of happiness. I decided to chant my “normal by July”. Of course, I was still not speaking in complete sentences, so Jim just kept saying, “squirrel”.  My mom on the phone told me that while it was nice to hear me breathing on the phone and not finishing one sentence, I should probably rest. I followed all the rules because I wanted my freedom.

Our next day, we spent an hour on the phone reviewing with the doctor all my 3 broken genes. I started taking notes as if that would help the words disappear out of my mind, but I did hear that my one broken gene was most likely the reason for my cancer and my cancer would not go away because of this broken gene. It was all very complicated and I kept focusing on the other 2 broken genes. One is unique and no one had seen this before, so my interpretation is that they cannot really know. These tests are great, so that they don’t give me a drug that won’t work, but these tests were on the original tumor. My thought turns to mutant cancer cells. This new discovery provides us with more knowledge, but again even more unknown. I remain focused on my freedom and my proactive approach to side effects. I look forward to continued sunshine and sharing my day with my family. One day at a time is what I have to do. At the same time, my motivation may seem strange to some, but I prefer to be among people than to be alone with my thoughts.  Wishing all moms a very happy mom’s day! Enjoy the day!

 

 

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this inner light.” Albert Schweitzer

May 8, 2012

I am reminded often that my perception of myself doesn’t match the reality. While living in my pretend world, I push my body to extremes and hear it cry out or scream, “stop what are you doing!” This second chemo treatment, I kept a log of side effects each week. It seems that my “freedom” from the weekly chemo is not as free as I thought. I have to write a book on each chemo and controlling the side effects because I am not willing to stop making the most of each day. I still have hope that the treatment of cancers will change from using the same drugs from 20 years ago. Until then, I am determined to control these side effects.

In the meantime, on Friday Alex and along with some other students started the day at 7am with a Tahitian dance for the school (book fair theme teaser, I am the chair of the book fair-my last book fair). Then, another surprise, I submitted the application to OC Dept of Ed for our students PAL group for PAL program of the year and our school won. It was so joyful to see the students excited about the win and know that they really all are super stars. At the meeting with the students, they talked about what they learned and it could bring you to tears what these students said about PAL changing their lives. Of course, we ended the day with our table to raise donations for pediatric cancer until 7pm. This was the time that Alex told me he was wiped out and I finally listened to my body. Even though my body felt as if I couldn’t even move, my mind was saying yipee since my mouth sores were going away and my feet were better.

I was so excited to enjoy my weekend, but Jim and Alex started feeling sick.  My frustration grew and sadness overwhelmed me. Finally, a weekend free from my side effects, and my boys became casualties of their stress and worries, germs or whatever. I watched the episode of The Big C where Susan Sarandon played a survivor who sold “joy retreats”. The episode had humor and truth. Where’s the joy in having cancer? How can you find the joy when more of real life challenges combined with your cancer job seem to be without joy?  Alex had a fever, so he missed the pediatric cancer walk that he was looking forward to for months. I am always confused when these curve balls are tossed to me, but I decided to get ready for the walk.  My creams and potions seemed to be a recipe for success as I convinced myself that I had to finish the 5k if not for myself, for Alex or for the real reason why Alex chose to be the team leader- for all those pediatric cancer patients who are unable to walk the race themselves.

I did walk the 5k without my thoughts on my ailments.  I looked at the team shirts that surrounded us with names of children who lost their battle in their cancer job. This job shouldn’t be accepting of such young applicants. I walked with friends and got to talk about who knows what, but enjoyed being with them. When the race ended, I was sad to be without Alex and Jim. I talked with a pediatric oncology nurse who pointed out her patients. These patients are all under the age of 12 and are on many of the chemo drugs that I have been on or are the same drug as me. She expressed her joy at seeing these patients finish the race as they were on their “off weeks” like me. She pointed to the shirts that walked by us and told me those were her patients too. She explained the prognosis for many of these children was not great. She also told me they face their cancer job with such hope, determination, and strength. I asked her how she does it and she told me that it is her job. She expressed her frustration with those outside the cancer world who are not compassionate or understanding as they are caught up in what is not important.  Unless you are in this world, you wouldn’t want to see the truth behind the race. It is much easier to look at the race as just a race instead of a race to win a vacation from a cancer job or a race to survive. Yesterday, I found my joy in the faces of my friends and their children, the young survivors, the families of those who lost their children in this race, and am reminded again of living in the moment. I am also reminded that my body was screaming out to rest. When I arrived home, I listened and fell asleep sitting up on the sofa surrounded by my boys and found my joy once again. I hope you find the  joy each day.

 

“Believe there’s a light at the end of the tunnel. Believe that you might be that light for someone else.” Kobi Yamada

May 3, 2012

It has been a while since my last post. My roller coaster ride is still going and I was feeling like I was on a merry go round spinning out of control. This is the life of a cancer patient. I had thought I would have more freedom with weeks off from chemo, but these weeks have been strange. I have had my tumor marker rise a bit, fall a bit, to rise, and now falling teeny bit. I will stay focused for a trend, but this does not make things easy for myself or for my family. Also, the side effects have increased to the mouth sores and foot issues with blisters/sores. If there is one thing frustrating for me is weeks without chemo and being unable to move and go. Plus, there are medications for all of this. I always ask myself what the “other” people do as I was on the phone for days if not weeks attempting to get the meds I need. In the meantime, I followed the old time remedies with lotion and soaking my feet. My feet were so covered with lotion that I almost slid into the toilet from all this slime! Of course, none of it worked. Yesterday, I finally did get the lotion for the feet and hands, but still waiting for the meds for the mouth sores. I will do anything to keep eating and keep my strength up even though it is painful.

On the other “hand”, I am still smiling to myself thinking about what is often in the news about what to eat or not to eat, what to drink or not to drink for all these cancer remedies. People, I can barely eat as it is, so I am really going to do my best and I am sure most cancer patients are right there with me. If there was a magic food or drink, don’t you think cancer patients would have eaten it and been cured rather than put the toxic crap into their body. All I can say is that this better be working because I don’t think I can drive with slippers and ice packs on my feet and certainly cannot walk in the grocery with my puffy socks and lotion lathered on my feet! I would be sure to slide into the freezer section or a wipe out in the produce section.

I do have to say that I had a birthday to remember. I was so very thankful to be here to celebrate that every moment was a celebration. Jim and Alex were finding the week long celebration entertaining. I had lunches and dinners with old and new friends. We did a lot of laughing!! I had letters, notes, and such special meaningful thoughtful gifts that brought me to happy tears. Some people asked me if this was one of the big number birthdays and I just responded that every birthday for me is a big birthday. I cannot explain it.  If you were my invisible shadow every day seeing what I go through every second, I know it would surprise you how much it takes to be a cancer patient who wants to believe that she doesn’t have cancer. Cancer job does consume me and I try to avoid it, but it is critical for my survival that I do follow all the steps and routines of attempts to eat, sleep, drink, pills, lotions and potions. I appreciate everyone who tries to understand even though you cannot even imagine. I appreciate every effort that is made on my behalf to make my day great and bring me sunshine even if there are clouds outside or inside my head. This is why my birthday was so special and I cannot express how much I appreciate all your thoughtfulness. I was surprised at school with an award of $555 to purchase books for our school library. That was a well kept secret although Jim thought Alex knew since he had mentioned the same thing the day before it happened. I think he may have some good ears!

The next surprise came for me today with Alex writing the author of our local online paper for our town to nominate me for being his mom. Of course, he did tell a little lie when I asked him what he was doing and told me he was working on his online test for practice. He was also almost late to school this morning since he wants me to “win” the vote  and wanted to send emails out to everyone to make a comment since he thinks it would be “cool” if I could win and go to a spa or trip for a day. I told him I don’t need a spa trip (little does he know I can barely get enough free time to go to the grocery and visit a store besides the pharmacy), but just some fun time with him. Of course, he responded with “Disneyland”.

You can check Alex’s nomination…the entire essay he wrote brought me to tears. He is such a special wonderful boy! I want nothing more than for him to have some focus on anything, but cancer!

http://alisoviejo.patch.com/articles/readers-choice-boast-about-your-magnificent-mom-19bcd604#photo-9806839