Archive for June, 2012

“When the mind is backed by will, miracles happen.” unknown

June 30, 2012

My heart is heavy and I am definitely on the edge of screaming, laughing, or crying. Every summer we watch Australia’s Master Chef. We are always impressed with the Australian spirit of support, kindness, and positivity. If you compare this to US Masterchef, it is completely the opposite. We are now on our third season of the show and enjoy watching these home cooks create some amazing food. What is more fun is the slang and lingo of the Aussies, “how you goin?” and even in moments of food disaster, they manage to see the bright side of the situation.

I don’t like to think about the cancer inside of me and it just creates a bad visual. Alex has been having moments of sadness since he says, “he can see sickness in my eyes”. Again, cancer sucks for everyone in my circle. It is frustrating and annoying. My week started with my PET scan. Now, I have had many of these scans. I know my body and veins. I told the technician not to use a particular vein and I guess he thought I was one of those types of patients who are just complaining or have a fear of needles. Of course, after I had told him not once, but several times that it hurt, he declared that the catheter would not go in…Yes, I told you so! Back to the arm/vein I told him to do. I was the first patient of the morning, but instead of phasing my drink consumption, he added ice, told me to drink it all since they had back to back PET scans. LIKE I care!? I did what I was told to do and sat in the dark room trying to not think about anything and stopped myself from counting backwards from 1000. I was shivering even with a warm blanket. I knew I wasn’t supposed to move, but reached for another blanket that was used for my arm. Since I was tired from not a lot of sleep, I almost fell asleep, but then the door opened and I was rushed into the scan. I was awkwardly propped up, and missed something which I remembered the pillow to support my back. Oh well, too late. Inject solution started that makes me feel like I peed on the table. Now, I am used to the sensation. No one explained anything about the timing and I was slid silently into the scan tube with the banging and buzzing. My thoughts turned to the awkward position of arms over my head, but this time a pillow was provided. Unfortunately, I thought my hands were frozen and thought to myself that it would have been nice to offer a paraffin dip with moisturizer for hands and feet while in this machine. Anything would have been better than this strange silence of voices. Images drifted into my mind of Alex and Jim laughing, but I pushed the image away as this brought tears falling down my face which I could not dry or wipe. The machine stopped and I saw people wandering in and out of the room and a person behind the glass looking at my images. ( I saw them walking back and forth.) No one said anything. Why were people in the room with the machine? Was this a party or was this party over? What seemed like too many minutes ended with “oops, I forgot to put that pillow for your legs”. I thought to myself that I was happy this wasn’t my first time. I pledged to write to Hoag and coincidentally received a survey which I quickly completed. No wrap of my arm to prevent bruising, no glass of water offered, what happened to the Nordstom’s of PET scans. I learned that Hoag Irvine will have the machine and will be offering scans soon. If I am going to have a party, I would rather be there. Next time.

Meanwhile, the report came back, but seemed to be missing some key comparison. Yes, the radiologist language indicated the cancer was more than microscopic and seemed to be exactly what I didn’t want to have happen. I talked to docs at UCLA who wanted the cd of the scan and were upset that some comparisons were missing. Of course, this just motivated me to call radiology and explained that the doc that read this scan was the same one who misread my first scan. I wanted more comparison and someone else to read it. I had talked to numerous people and made too much effort. I still think what others would do. They assured me that the scan would be read again the next day.

 

I began my day with my own comparisons based on prior discoveries. I pulled up each report and compared items from the areas of concern…was it a cyst on my liver or tumor, did the implant on the liver stay the same or grow, was this the same area back in 2010 that never left, was my pelvic area the same area as before….then, Jim told me that I did a good enough job and hoped all my efforts made me feel better. I asked him if he thought I should call radiology again with my “findings” and he said he thought my 6 calls were enough and someone would respond. Sure enough, a call from a radiologist came and he had read one of my many scans from 2010 to now. He told me that he had spent hours reviewing the scans and then told me that he had a family member with peritoneal, so he had that kind heart who understands, but is a doctor too. We went through my list and his interpretations. He was so amazing describing sizes of these implants (peritoneal cancer) on the top of my liver, on the front and behind we’re the size of a peanut (without the shell). He confirmed that one was in the exact spot as the one back in 2010. If I thought with perspective, all this chemo has kept these microscopic cells from growing for about 2 years into these “nuts”. He also explained how free fluid is not good since that would mean that those cancer cells could spread to all the organs in the abdomen. The fluid I have is considered to be a gelatinous blob in a pocket in one area. I thought was it something that is a full crisis where I should miss my trip? He felt not, but again explained he was not an oncologist. He did tell me of doctors who treated his family member at UCI and asked if I had been there for another opinion. It has been on my list and will move to the top when I return. He explained his opinion when I asked about UCI. We ended the call with his number and his kind message to call if I ever had questions again. I felt so lucky and again realized without all my crazy cancer job effort that this would not have happened.  Lesson learned again, the doctors are out there, but you have to find them. I did my recap of this call to all my UCLA docs as if I was part of the tumor board. Of course, I had to google the spelling of his medical terms, so I was speaking the same language.

 

Then, my job continued with blood test Thursday. After having my blood drawn, I was informed by one of my favorite phlebotomist that whoever did my scan really did a number on my veins. Oh great! While I waited for the results, I started with all the different plans, plus had a few conversations with myself. The results came in and I started sending emails to UCLA.  Strangely enough, my blood counts have plummeted most likely a result of the new chemo. I am constantly trying to put all this “junk” to the back of my mind, but know that all that surround me are feeling my worries despite my efforts to disguise myself in laughter and smiles.

Now approaching day 4 of the new chemo, I am finding it isn’t that bad especially since I have been on this ride so long that I have an arsenal of potions for side effects. Meanwhile, the call came in and votes are in…I should continue to take these renal cancer chemo pills, get the same chemo on the 5th that gives me hand and foot syndrome, and there will be shots to boost my counts. These shots will help me get through the cruise without issue. When I return, I may need to change things up, but for now this is the plan. We also discussed additional genetic testing should be done since it is NEW and for women who do not have the main genetic defect of BRC1 and BRC2, but have others. My focus was asking him once, twice, three times if he was comfortable with this plan and that I have time to allow less drastic measures now. He agreed once, twice, and three times. Unfortunately, this new chemo regime plus the old chemo requires many steps so that I can make the effort to exit my house. It is exhausting, but you know me, it is all worth it to keep things as “normal” as possible for Alex.

“Do what you feel in your heart to be right. You will be criticized anyway.” Eleanor Roosevelt

June 24, 2012

I am concerned. I am back to feeling like I have cancer…the lack of appetite, the bloating, the digestive system gone crazy, and as Jim says, “the look”. Monday was UCLA. TUES was my MRI/mammogram. The gene mutations I have increase my chances of breast cancer substantially. I was happy to eliminate these 2 body parts from the equation. I explained to the technician about my veins, but still ended up with the drug addict arm. Come on!?! I waited for the radiologist and docs who reviewed the films and was told that all is fine above! Then, Weds we went to Scripps. As we drove along the coast, I felt the weight of this cancer filling our car. Between the sadness and frustration, I was overwhelmed with emotion that my mind could not think clearly. Instead, the usual joking about this and that was ineffective. One day at a time is what I kept telling myself. When we arrived at Scripps, I was greeted with the same friendliness as at UCLA and I didn’t have any treats. Luckily, we beat the mad rush, so by the time we connected to the wireless, my giant box with my vaccine entered the room. As Jim explains, it is like those Russian nesting dolls when they open the giant box. There are the layers of temperature gauges and dry ice. Box after box, there was my teeny tiny vial of dendritic cells. Jim and I were joking that I wanted my cells back. They were MINE! Unfortunately, when the doc and reps for the trial study explained to me that I am merely part of the study not for any data points, but to test for toxicity. Oh Great! Each of these people said repeatedly, “it may help, we don’t know”. I am glad that we all agree to disagree with the hopelessness stated by the drug company. This is not my last resort and I don’t feel that hopeless. As required by the trial and I am sure some liability, I had a very special exam when the doc determined she felt nodules in my pelvic area that were not there before, so these could be tumors, but the PET scan will determine cancer or not. Yes, she said I was bloated and yes, the groin lymph node was enlarged and palpable. I know my body. I cried as Jim held my hand. There was discussion about the next vaccine and Jim joked that we have our usual bowling game on that day. This doc looked at my hand and foot syndrome to declare it the worst she had ever seen, but her age may have reflected what I knew to actually be the best I have seen since my 4th infusion of the drug. She also looked at my chart and was not convinced that it meant that the rising ca125 was a sign that the drug has stopped working. Again, all I know is how I feel. (lesson #425 learned, listen to the signs of your body) This was the doc who said I made it too difficult because I act like I feel great. This was also the doc that while I felt my cancer came back, she felt waiting would be better. Again, I am reminded that she felt the nodules and did such a thorough exam that I must see the value of what each doc brings to my treatment.

So, two nights ago, Alex broke down. With his graduating elementary school, seeing me not feel my best, and being part of this cancer job, he told me he was just too sad for words. Then, for the second time since my diagnosis, sobbed uncontrollably saying, “this is too much, you having cancer is too much and why can’t I just be a normal kid with a parent who doesn’t have cancer” . I agreed with him. As much as I put on a happy face and carry on, he asks questions as he is smart and has always asked us to be honest. Do we share all the details? No! As our counselor recommends to us that keeping things from Alex will only make his mind wander and honesty is best with always a focus on what our plans are and what I will do to fight against my cancer. This works for me since Jim and I always have a plan and maintain a positive attitude. Our success as seen in what Alex has done this year and how he has coped and grown is seen with how we try to keep things as normal as we can. (Cancer with a twist of normalcy.) Of course, when Alex is upset or worried, it comes out in strange ways like his focus we call analysis paralysis on something silly like where is his blue shirt or why a friend joked with him about something he would normally laugh about, is now something that would either frustrate him or cause him to question why a friend would do that to him while his mom has cancer. His inability to see why a child would do certain things is less about kids being kids, but more about why kids don’t understand how difficult his life is as a child of a parent with cancer.

 

My cancer job continued with juggling my blood test at Hoag and Alex’s last day of elementary school. I managed with the help of some very special friends! My family stayed for the rest of the certificate ceremony and I returned to see all the rest of the action. It was an unreal moment and Alex continued to tell me not to talk about it or ask about “it”. The “it” was the last day of elementary school. I tried not to look at the clock for my countdown to my latest tumor marker number. A call from my friends in high places informed me that the machine that does that test was broken and in repair, so there would be a delay. Why on this day does it break? Meanwhile, conference calls with docs at UCLA set for lunch Friday. Tuesday will be my PET Scan to see what the real story is. My tumor marker finally comes back as basically the same number as Monday. I am thankful it did not double. Yes, it is still high or too high, but I am focusing on the teeny tiny positive signs.

 

The conference call was more of the same. Yes, the plan to add the chemo pill which would potentially cause me to need a blood transfusion while on the cruise (NOT A GOOD IDEA) and wait for the scan to determine a change in chemo. I will have to do what I must and focus on some facts that if there was a giant tumor, they would have seen it in the ultrasound. Of course, I am reminded that there could be microscopic mine fields of teeny tumors in my abdominal area. One day at a time.

Summer is here. There is sunshine and smiles everywhere. Hoping you get out and enjoy yours. I will follow my heart to continue what I know to be right. I hope you will too.

 

 

“My angel is a centerfold” J Geils Band

June 19, 2012

Don’t know why that song came to me…maybe because one of my dear friends was making me laugh about my not so great news of my tumor marker going higher. She asked me if I was ready to be on the cover of “Chemo Quarterly”. I responded with that I am now going to be centerfold.

Here is what I am having my team communications leader, Tiff send in email

It seems that my tumor marker is back on the rise. I am thankful to have such a wonderful team of doctors. I went to UCLA today and discussed that I will go get a PET Scan this week or early next week. My one doctor who is out of the country even responded with his positive spin that it may be only microscopic cancer. Three cheers for microscopic! Who knew that I would get excited about that!

 

Meanwhile,  I did all sorts of other tests today for UCLA and some for Scripps. I am scheduled for my vaccine on Weds (the one that I was in a trial back in Sept made from my own cells) at Scripps.

I am in the crossover trial study (one of the lucky ones) to get my vaccines while I take chemo.  Unfortunately, this chemo is not doing the trick alone. The doctors are thinking it is a partial response to the chemo, but are hoping that the vaccine may push it in the downward direction. If not, I will start a drug that is for pancreatic and renal cancer. This chemo drug is a pill form, but the thought is that I would stay on my same chemo called Doxil. If my tumor marker continues to rise much higher, then I will switch chemo to a combination of the renal cancer drug and another drug which is not so special and would make me very sick, lose my hair, etc….

So, we have a plan in place, but again one day at a time. First, the vaccine on Weds. Second,  the PET scan to make sure that there are no tumors hiding in my body. Third, possibly add the renal cancer drug. Fourth change my chemo from Doxil to combination of the renal cancer and another drug.

If we weren’t going on our cruise July 17th, things would be a little bit easier as far as planning, but this is in an effort to buy time. I may have to do what I have to do.

My family is here visiting, so besides all of you wonderful friends and far away family, I have a great group of cheerleaders! Plus, I have Alex “graduating” from elementary school on Thurs. Yes, we are still “in school”.

After briefly screaming inside, I know that I have a plan. As usual, I appreciate your emails, hugs, cards, laughter, and prayers.

 

Thanks for riding this ride with me.

 

Learning Curve of Cancer-The People

June 17, 2012

I used to be annoyed with the head tilt and big sigh when people meet and greet me, but I now realize that people really don’t know how to deal with this even if they had someone in their family who had cancer. I am now accepting of all ranges of reactions which include ignoring the fact that I have cancer or nervous laughter or silly comments. I still do not accept EV (emotional vampires) and their horror stories of “poor me, my cleaning lady did not show up or poor me, our vacation home in Maui needs new carpet….” I must say that I am least accepting of stupidity. I prefer silence or a simple comment about the weather. I also understand the emotionalism about the word cancer. I am not afraid of tears, frustration, or extreme laughter at the irony of the situations. I am hoping more people don’t pretend to understand when they simply cannot even comprehend what I go through, what my motivations are, what my family goes through. I also really don’t dig the comment, “breathe, relax, or you know what you should do”. I am breathing and sometimes, there isn’t time to relax. If I had the answers or knew what the right thing to do was, believe me I would “fix it” or “do it”. Unfortunately, there are no answers and cancer has a funny way of behaving and not cooperating as you would like it.

How as my behavior changed since cancer? I am all about planning what I can plan. I have so much out of my control and out of control for my family that every bit of planning helps. I try to be more accepting of the unknown even though it frustrates the hell out of me. I am more present for friends, family, and strangers. You never know who you may meet or you may connect with or learn something from even a stranger. I often do not have a reason for why I do what I do. I often “just do it”. I do things that make me happy or provide me with more sense of purpose. As Alex says, he enjoys things that busy his mind from his worries. I am the same way.  I appreciate people trying to understand, but sometimes my motives are illogical and I panic about things that people may find silly. I get frustrated with people who get caught up in the silliness and do not look at the big picture. Is it that critical that your house has piles of clean clothes in the laundry basket? BUT if that will make your day complete or make you happy, then go for it-fold the laundry! I have learned that I won’t question other’s motivation or be disappointed. We all have different priorities. I am happy for everyone who does not have to think about the things I do or as Alex told the middle school, his stress and worries are not what they would think. I am surprised and relish those who try to get “it” as Alex says. I am thankful for my cheerleaders and my positive team who get me off the pity pot when I sit there for a minute or two. I have changed my old “gotta go, got someplace to be” attitude. So, I don’t have milk in the fridge or did not work out. I was thrilled to hear what is new and exciting for you or listened to your frustrations. Life happens and I don’t expect it to stop for those around me. I am still the same person who likes to “solve” and “help others”. I enjoy trying to help people of all ages. I love to listen to stories just as people have listened to me. I stop questioning other’s priorities and am more accepting of the fact people cannot truly understand mine. What may seem silly as to why I think about Alex’s bar mitzvah since he has 2+ years to go is important because every day I ask myself what hopes, dreams, plans I want for Alex. Unlike most people, I am forced to think about these things daily. I don’t worry about the what-ifs, but only think about what needs to happen. So, when people think I may need rest or need to walk or need to eat, I appreciate the care and thoughtfulness, but my motivation for the moment may be different. People cannot know what my daily battles are all about or what this cancer job puts me through or my family through. Just know that I have reasons for the things I do and say.

Most of all, I am more understanding and accepting that people are people with various personalities and idiosyncrasies. We all have our strengths and weaknesses. Most people have good intentions and cancer is “messy”. People don’t always react in a range of what is an expected norm of behaviors. I must say that I selfishly love those who ask, “What can I do to make things easier for you” or do small things to make me smile (a funny card, a letter, an email, a photo, a flower or a simple hug).  I am always learning about myself and others. I do have high expectations of those who surround me as I put those same expectations on myself. I don’t have time for the pettiness of those who focus on all the minutiae that won’t make a difference in the long run. I do say to myself often, “what is important here?”. I also ask, “Why am I really upset?” Usually, the answer to that question is that it truly isn’t fair and a life of a cancer patient isn’t easy. Then, I re-focus myself and think about my first question and am more present for the moment. One day at a time still works for some things. I have come a long way in judging people and even judging cancer patients. What is good for one is not good for all. I still believe sitting too long on the pity pot and not being positive is not helpful or healthful. So, clean your house, fold your laundry, and tilt your head, scream, laugh, cry, or stomp your feet-there isn’t a right answer in reacting to cancer. I choose to enjoy the sunshine around me. I hope you find yours.

 

David McCullough,”Astrophysicists assure us the universe has no center. Therefore you cannot be it.”

June 15, 2012

Where you goin? Gone to chemo land for too long. I slept for 5 days non stop off and on. I told Alex I was sleeping beauty, but he said sleeping beauty did not look green/grey. Unfortunately, I was in my state that all electronic devices should have been taken away. I was thinking about the cruise, so I started my online shopping….of course, I did not remember that I did any online shopping until a few days ago and didn’t know the extent of what happened until yesterday when a bouquet of flowers arrived from my friend at Nordstom, Kim?! Who, what? I called the florist and then, flashback. I remember slightly that I called Nordstrom when my order for a skirt was being shipped to my dad?! I barely recall the conversation, but do remember rambling on and on about how I shouldn’t do any online shopping while under the influence.

Meanwhile, some super surprising events happened….the PTA surprised me with a lifetime achievement award. My entire family showed up to the meeting which I was expecting to give an award to a parent who had started a terrific program called, ability awareness and a student who has helped our book fair and happens to be an exceptional young girl in middle school….of course, none of that happened. My parents, sister, husband, nieces, nephew, Alex were all there. (poor Jim had to work in San Diego). I really appreciated the honor and spoke from my heart to all those who were there about making the most of the day and thanking our principal, teachers, and office manager who are more than exceptional…I do feel with my cancer job and all the PTA and student activities that I feel like I have accomplished what I set my mind to do. I don’t feel like I am ever done, but am so thrilled with making a difference in these student’s lives. (and most importantly, my son’s life and his outlook on how to be the best you can be)

Not only am I surrounded by my family, but my cousin is here with his family. Of course, the news today is that my tumor marker is up again. Back on the roller coaster ride again…but I will not focus on this damn number, I am surrounded by family and friends. I will continue to fight as I do. I did get the news today that Scripps will be giving me my vaccine on Weds (the one that I had back in Sept and now I am in a crossover study (trial)). I am hopeful that it may be just the push my body will need (some of my dendritic cells on “steroids”) to fight this crappy cancer.

No doubt about it, cancer sucks!

In memory of a fellow cancer warrior-Jennifer Goodwin who passed away June 6

“First of all, stuff happens, and that’s that.  But secondly, not that I would EVER be one of those people who feels lucky to have cancer (GOD NO), but I think about it this way: If you had to choose between:

a) not having any idea whether you were going to live more than four more years and therefore living each day with love and like it was your last or
b) feeling confident that you had a full life ahead of you and continuing to live half-consciously and doing things you don’t like to do, and complaining about everything that is even slightly lacking in your life

Which would you choose? Which would be better? Which would make you feel cursed?

Just a question that got me thinking.

carpe diem, people”

Jennifer Goodwin

“If today was your last day and tomorrow was too late Could you say goodbye to yesterday? Would you live each moment like your last Leave old pictures in the past? Donate every dime you had, if today was your last day? What if, what if, if today was your last day? ” Nickelback

June 8, 2012

I know that I have used this song for my blog, but yesterday, my grown up Alex had to ask first, if he could use the female dog word out loud to ask a question about a song. I gave him permission to speak. He asked why the Nickelback song said, “Leave old bitches in the past”. He didn’t understand, but confessed to me that he heard me use that word before and he thought I didn’t mean a female dog, but knew he shouldn’t use the word. I told him the lyrics were , “old pictures in the past” and he moved to his next question of, “could we go to the concert?”. So, I looked and yikes, it is at Staples center in Los Angeles. I told him that we should do further research about concerts closer in the area, so he is on his google  investigation. Of course, meanwhile, I think his message to me was not without thought since he is an old soul. I definitely should and do leave old bitches in the past. It isn’t worth the energy and believe me, my energy reserves are depleted.

This morning, I received the news that my tumor marker was down 10 points. I entered this data point on my graph which Alex proclaimed a downward trend with some bumps. I will take it. Just need to stay steady to July and the cruise. One of the next drugs I will take is an immunosuppressor given to transplant patients which as my doctor explained that it would be good to stay away from people. WHAT? I love people! Hmmm, for the love of people, I will do what I have to do, but prefer to do it after our cruise. Plus, would love to not wear my wig while I have a bit of hair which I will lose if I take the next routine of drugs, so it may look weird, but would be much cooler. I will have to get approval from my fashion coach, Alex.  So, my fear of numbers wasn’t justified, but I could not help last night trying to run all those scenarios in my mind while toxified with chemo and steroids…not a good mixture for numerical analysis. I gave up and went to sleep.

Back to yesterday, (sorry for the jumping around, but this goes back to the “squirrel, squirrel” moments while in chemoland fog) I was not in the mood for chemo and for the first time did not wear earrings and did not find my cutest outfit. I was thrilled to be “armed” with the baked goods o-rama. Instead of 3 offices, they now have 2 and it was packed to the rim with patients. I started handing out my goods and the office told me that my doctor said I wouldn’t be here today. Not a good sign. I saw my doctor and announced that I was here. I proceeded to go to the closet. It was packed, but they hurried me into the place since they “saved” me a chair at the window next to my upbeat partner in crime. Wow, a VIP uprade! Second time at a window and the place is packed. I felt lucky and didn’t look back or around at all the other chemo patients. I was not in the mood for the potential debby downer. I stuck by my partner and start our laughter and fun. Our nurses even unlock our chairs so we didn’t have to stretch our necks. Who knew we could have FREEDOM…I was already confused and not speaking in a logical way and didn’t even have any drugs. Luckily, I noticed that I was about to get the same drug I took by pill 15 minutes ago. Just caught that in time. Then, it came to the waiting for the doctor after my blood looked pretty good. (or good to go for chemo) Since my partner in crime (the sign was up for no loud talking and I couldn’t see if my name was written below) and I sent our hubbys for a lunch request at 10:30, we decided to alternate toilet visits since she has the same doctor. This way we wouldn’t miss him. We did notice some VIP VIP in the private room was getting a lot of attention. We also saw another doctor giving a tour of the room. We both smiled to this newbie and told her it is so easy. After they left, we said to each other at the same time, “except for the side effects”. I told her what Alex said at his middle school meeting and she told the nurse that Alex could work there asap as he understands better than most adults. Sad, but true. I would rather have him understanding about none of it. A woman came over and I wasn’t my usual extended self. I have no idea why, but these last few days of deep conversations have left me without any space for anyone else’s stories or troubles. (or should I say, any new people with any stories) My peeps are my peeps and I will always be there for my friends. Of course, I was later feeling too much guilt as this closet was pretty dismal with too many faces of 20 year olds, so I had a conversation with the woman and tried to lift her spirits a bit. My doctor explained all the scenarios which I half way listened. Since my current chemo is not that studied with the other drug, we would need to be cautious since it is a cardio toxic combination. I would have to have more heart studies and blood work every week. I did get an increase in the dose to see if that would push my numbers lower, plus I am in the final preparation for my return to Scripps on the 20th for my vaccine which will either do something or nothing. All in all, it wasn’t too bad and I went home to sleep.

Back to our middle school meeting, I was and still am so impressed with Alex and his ability to articulate his feelings so well to these adults. I also had a new found appreciation for those who do the head tilt and comment, “I had a cousin, grandma, or uncle who had cancer and died”. I never knew there were adults or adults in the world of education who could make some comments that, “they get it because they ran in a cancer race” or that Alex’s dad probably told him to “toughen up”. I am fortunate to be in a school with teachers, educators, and staff who do get “it” and have a compassion and understanding at a level that is much beyond the average person. I really thought since I have met so many people along my roller coaster that I never thought a lower range of understanding was out there. You know in a year’s time, I will change their understanding so that they would not put any student or parent in a similar situation. Alex so clearly expressed what our school has done for him like his principal just coming up to him at lunch or recess and talking about sports to get his mind off me or his teachers just seeing the look in his eyes and know what he is thinking about or a visit to the office for a chat that calms him and allows him to go back to class. He explained his friends who support him and friends who even cause distractions in the class to have laughter fill the room, so Alex won’t feel sad. Those who just understand without making the cancer be the subject and provide him with support and comfort. He also explained his coping of doing his art, music, and tennis. Most people know that I am a talker, but I was a listener that day. When I explained Alex’s sensitivity especially when he has worries, Alex got tears in his eyes and I tried not to cry too. I just tapped his leg and smiled holding back the tears. I was wondering what these adults were really thinking since most remained quiet and listened. Some had expressed how impressed they were with Alex and his honesty and ability to articulate. There is much more to him than his numbers on his test scores. Yes, in a middle school this size, you do tend to be a number, but at his elementary school with almost 800 students, he has a name and he is known for who he is. With the school year coming to an end, I used to think about how I will miss the every day faces. I didn’t really think about how much Alex’s teachers, staff, principal, and friends have done for him. Each one has made a difference in his life that is beyond what my words can describe. It has been the difference in Alex being a successful scholar. As Alex said, when teachers or people don’t get “it” (the cancer”), this causes more worries for him. I am glad that my village gets “it” and gets Alex because this had made all the difference for him since 3rd grade and my diagnosis.

I was in my fog all day and hope it will clear with tomorrow maybe a walk around the block. Hope you are all enjoying the sunshine and clear air.

Rock Star Junior-Alex and my fear of numbers

June 6, 2012

Will write more later as I am off to UCLA this morning, but had to share that I could not have been more proud of Alex yesterday. We had a meeting at the middle school with 5 adults and then, met the entire office staff. Not only was he assertive in explaining his needs (because he kept getting interrupted), but he explained my cancer as if he was a doctor. He explained my cancer is microscopic cells all over my body and no tumors now exists. He also said if tumors form and invade the major systems of the body like respiratory or circulatory, then my body would not function. Either the adults were so in shock or looked like they did not understand. Alex explained that if the major organs had tumors, then I would not survive, so this is why I am on chemo for the rest of my life. When asked what we talk about at home, he responded that his life is unlike any other kid not because of stress (all kids have stress), but he has to think about things that other kids would not have to think about. He told them that the other night he had asked me if I was going to die from cancer. He explained that there aren’t really answers and that is difficult for him. He is so amazing and I will tell the full story later…but I could not believe the way he handle himself.

Numbers in cancer suck whether it is your blood, the tumor marker or just the statistics. Numbers and having a child when you have cancer is always a calculation. Alex will ask, “when can I drive?” and I think how many years of treatment will that be. Alex will ask, “when can I vote?” and I think how many years of treatment will that be. Alex will say, “at my bar mitzvah, I want to have a party” and I think only 3 more years of treatment. I try to not think of the numbers in this way as far as years, but am reminded by Alex when he asks his questions.

So, off to UCLA and I am not in the mood…but I will be armed and ready to go with the baked goods made with a lot of love. The clouds are starting to clear to sunshine.

Where you gonna go? I am gonna go to Chemoland!

June 1, 2012

Strangely enough, my tumor marker decided to really mess with us by going down just a teeny bit. I am thrilled as I will continue my freezing of my feet. I will try to use my vaccines at Scripps to see if they will push this chemo to work better, faster, harder and kill those cancer cells. I will still do the chemo at UCLA and they will increase the dosage because how could my feet get any worse?All my focus is to stay on this chemo until the trip to Europe. It is worth a try to take the vaccine since all the rest of my options are way too unknown and not without risk.  I did say to Jim that I am not feeling great, but I am also not feeling horrible. (somewhere in between) I tend to ignore most of my ailments as it doesn’t help me to focus on that “junk”. I will definitely enjoy this weekend with a trip to Angel stadium for a game, trip to the Pacific Symphony with Alex’s music group, and I am sure some other fun things which include a cocktail or two because it feels like summer. Enjoy the weekend. June is here, and all I see is sunshine and no June gloom.