Archive for July, 2011

“When other little girls wanted to be ballet dancers I kind of wanted to be a vampire. ” Angelina Jolie

July 28, 2011

I do not have this in common with Angelina Jolie although I do feel like a vampire.  During my blood check at Hoag (besides noticing many more bruises), I found myself to be a bit hoarse. Oh, silly me, this is not losing my voice…it is called DOE (not to be confused with DOA). This is different from SOB (not what you think, but I was thinking this while my report arrived), shortness of breath. All this time I was thinking I was just tired, but losing my voice was due to the DOE  (dyspnea). I guess I should have seen the sign, but I was focused on my new ailment. This ailment is similar to the “I have fallen, but I cannot get up” and is called, “my bladder fell out and how do we put it back in”. Well, it did not really fall out, but it feels like it. Just add this to my list of side effects and add to my list of repairs like a house repair list, but it is for my body.

My immediate concern was my blood report. Are you kidding me? My platelets crashed with a lowered dose of chemo and my red count has not come back. So, off I waited for a shot to boost the red cells and a bag of platelets. I was so happy to beat the rush. I was equally happy to bring the average age to about 85. My room partners were 92 and 88. One was whining and the other told me the shot never worked for him. I listened and smiled since he is 90 and not sure what would work for him.  I had a great nurse who had a lot of suggestions for my recent bladder problem as well as my lack of appetite again. Oh, it could be the fatigue from the lack of red cells…I don’t have time for more fatigue.  Got the Newport Beach platelets, but I did not feel like a martini, botox, plastic surgery, a new car, or jewelry. I just wanted to get out of there!

Since I have not forgotten my other job of trying to get volunteers at the ULCA chemo matrix, I followed up with the chain of emails. I was reminded of this when I went to Hoag and was greeted with about 5 volunteers who wanted me to eat lots of cookies and drink a lot. I was convinced to eat these ice pellets with a spoon, so I could keep the volunteers happy.  Last time I was at UCLA, I got some history about the volunteers or lack of volunteers. This gave me more fuel to get this going, plus as an old working person I used to hate seeing these long dated email chains. I guess the same cannot be said by people in the hospital world. I responded to the group with the big assumption that they are “working on this request” and agree (like they said in the email) that this idea is fabulous. They all responded with an idea of a meeting to “discuss” this in 3 weeks which is what they said back on April 29th.  Glad I haven’t forgotten about this. It is good to know that they cannot ignore me even though I think I am “spam” to them.

Well, this recent development with the blood has caused my doctors to re-think the dosage again. They all apologized and said we will figure it out next time. Of course, they wanted me to go on Friday to have my blood tested, but I convinced them that Saturday would be fine. I am hoping to avoid the big rush of chemo patients at Hoag as warned by my nurse.

Sorry most of you have been dealing with the heat while I am quite chilled by the breeze and have enjoyed the nice cloudy mornings. Alex and I are focused on collecting children’s book for military families because as he says, “everyone needs a good book to read.” He is right and I will make the time to organize this and mail the books. Just another fun project to keep us busy here. Enjoy July, August is just around the corner…gotta love these summer months!

 

“We’re half way there-livin on a prayer.” Bon Jovi

July 23, 2011

Yesterday wasn’t pretty. I may have looked cute, but I was not mentally prepared for the day, the smells, the whole thing. Besides being nauseous just thinking about the place, I thought that I wasn’t feeling that bad. The mind is a powerful thing as they say. Mine convinced me that I was feeling good. My blood counts came back horrible. Who knew? Maybe, this outdoor air confused my reality. The reality is that my body cannot handle this much chemo, so despite my best fake doctor analysis we had to reduce the amount of chemo. With my tumor marker going down (down is definitely the right direction),  the plan is to continue with this chemo. It was a back and forth dialogue and the facts convinced me that this was the best decision. I had to get a shot for my red blood cells and got my shot today for the white, but no shot approved yet for platelets. I got my order for a bag of nice Newport platelets (I don’t think you can request the place, but I am going to try.). Then, more reality, the statistics, the facts, it was too much to hear and just tipped me over to that side I like to avoid. I call it the “bad zone”. I was wondering if my face turned grey with the scale tipping me over. I know my face did say it all. My doctors and many nurses came to visit me so many times that I was getting paranoid that I must have looked pretty bad or not my usual smiling self. We discussed the next plan or next steps. I requested my vacation time from cancer. Only a 3 month request. There are many options to consider. When a plan was discussed that I should go to London for some drugs, I did enthusiastically say that I am all for a trip to London. Some shopping, museums, drugs, possibly a trip back to Oxford to show Alex. I am hoping a spring trip? Okay, I won’t get carried away, but thrilled to know that it doesn’t take tears of blood to get some attention.  I am still on the one day at a time or one hour at a time.

This whole tip to the other side made me think of another book idea called, Cancer Etiquette, the 411. While sitting in my pod, I would look up and smile. Many people (not patients) walked by and avoided eye contact. I was wondering if they did not want to catch either the emotions, feelings, or even cancer? Maybe, they just did not know what to say, but all I expected was a smile back. Yesterday, I must have been off my game or despite my smile, the energy I was sending was “watch out, I have cancer and it isn’t pretty.” I think as far as cancer etiquette, “how are you?” is too much for most patients. I don’t mind it, but I can see it puts others over the edge. I think I just expect what I put out, just a bit of kindness. I think I was pushed back to the good zone when I smiled at a fellow elevator passenger and he smiled back with talk of the weather. Weather is safe for anyone. I could go on and on about this cancer etiquette subject, but number one rule is do not tell anyone with cancer that you knew someone with cancer and he/she died. Not so motivating! Also, most hair topics are off limits.  Even though I find having a good hair every day fun and entertaining, most patients do NOT. Forget bald is beautiful. Plus, who ever said hair doesn’t hurt. It hurts when it falls out or is forced out by chemo.

Moving on…today, I was determined to get out of the bad zone. I dropped Alex off at the tennis camp and walked a little bit. It was so cloudy and cool that I could not resist. I said, “hi” to every gardener, maintenance person, walker, and jogger as I did not want them to feel invisible like I did yesterday. When I said ,”good morning “to one gardener, he smiled and said, “thank you”. Again it was a reminder to me about what energy you put out in the world. I am determined to not tip to the other side (at least for a week?!). Enjoy your weekend and make the most of your day! I know that the next days are hard for my body and I listen to my body now. So, I will be resting and re-energizing.

 

Gotta Luv Insurance?!

July 21, 2011

I really wanted to spend my energy for the majority of the day talking to insurance people because I had nothing better to do. I should have expected this as the shot I get to boost my white blood cells costs $4,000. Without it, I would need to be in hibernation. Of course, I had to exaggerate this a bit and say that I need this shot or I would be in the hospital. This is a possibility, but never my reality (they do not need to know that). Yes, I love how insurance operates on East coast time. Luckily, I have had enough calories, so my brain was operating efficiently. I had to explain the logistics of their new specialty drug plan would not work for me since I will not be home tomorrow and I need the shot by Friday morning.  The saga did not end, so I have names and numbers and Jim will have to be on assignment after we have our “planning” session with the doctors. At least tomorrow is not the full day in the chemo matrix, so we could have time to get this resolved in the open air outside the matrix. Jim and I have reviewed my reports and made our own fake doctor conclusions based on the facts. Unfortunately, we are not the priority until I either grow fangs or cry tears of blood. The fangs may be possible with my continued blood transfusions, but with no nose hairs tears hurt despite the consistency of the bodily fluid. Our goal is for me to stay on course with the current drugs unless they convince us of something else. I cannot be on chemo for more than this phase. I have decided we all deserve a break-you, me, family, friends…enough is enough. Of course, I will do whatever it takes to get rid of this cancer, but I asked the doctor for a 3 month break. I really want 6 months, but promised not to be greedy.

On a more fun topic is food. Why is it that when you cannot taste food, you want to eat the strangest things? I started with the pickle idea luckily my Dad solved that problem when he was here with Jerry’s Deli pickles. I do like the half done pickles. I am still fixated on marshmallow fluff and tried something like it, but it tasted horrible. I am definitely focused on Pink Berry salted caramel yogurt. I am dreaming of salsa, but only the kind I get at Tanaka Farms. I always hated ketchup and ranch dressing. I still am not a fan of ketchup, but now love ranch dressing especially homemade. I know it was a good sign last night when I wanted to eat something. I should have eaten, but instead passed out. Of course, this morning I started my morning with the medicinal feeling like I took too much of something. Oh great, tomorrow I get more.

Despite my lack of eating, I dropped Alex off at his tennis camp with the high school kids. He has declared that all the girls are very mean (yes, that would be true…glad he is only going to be in 5th grade), but the boys are cool. He does not understand why they are not showing good sportsmanship and even saying “bad words” when they lose. I hope he keeps this attitude. I decided to take a little walk around Soka University (origins from a Buddhist leader) to connect with any type of mindfulness and meditation. I found it strange as I walked the path, the birds were almost walking with me by flying from tree to tree along this path. Strange and beautiful at the same time. I enjoyed my brief walk and realized that you don’t need to be in Hawaii to see some beauty,but oh how I love that tropical air!

So, I will be off tomorrow and ready to face a good discussion, plan of action, or maybe a power point presentation on the top 10 reasons I should continue this type of chemo.  I will find the perfect outfit and accessorize (of course). Until then, I will have nice dreams of birds flying overhead like Snow White! Only issue is that I cannot sing!

“When we are being compassionate, we consider another’s circumstance with love rather than judgement… To be compassionate is to move into the right here, right now with an open heart consciousness and a willingness to be supportive.” — Jill Bolte Taylor (My Stroke of Insight: A Brain Scientist’s Personal Journey)

July 16, 2011

Thursday was the carmaggedon preview. It took us 3 hours to get to UCLA and 3 hours to get home. I guess there really isn’t anything going on here since the closing of the 405 has become the “carmaggedon”.  The chemo matrix was strangely empty and very short staffed with nurses. Only 2 nurses and my options were limited. Luckily for my doctor, he told the nurses to listen to me as I am “the boss”. I am sure they really enjoyed being told what to do by a fake nurse.(me!) I came armed with diva cupcakes which were too cute to eat, but brought smiles to everyone. The vase of duct tape flowers greeted me as if I did work there. My blood was taken and numbers for my red count did not look that great, but platelets seemed good (or so I thought). We had a meeting of the minds (although mine was missing-it must be due to the lack of oxygen or the carmaggedon). Both doctors expressed their concern about my continual blood transfusions. They made suggestions which I was not in full agreement, but I had Jim who does play the fake doctor. Jim reminded the doctor of the latest drug analysis and timing of the recurrence. All is so mysterious and there is no straight forward answer. My solution was to wait one more week and wait for the tumor marker test. If my tumor marker continued to go down, then let’s keep going. My tumor marker did go down (we were there long enough to wait for the test). I had this horrible burning from the chemo, so we had to slow the drip down even further and mix with saline. Since the tumor marker was good news, I am going to try to get my thoughts together for the  meeting prior to chemo next week. I do not want to change the chemo or reduce the chemo. October is just around the corner (okay, maybe not for you summer people), but I don’t want a whole new set of problems just because of a blood problem. I will swear and promise to no sword fighting, knife playing, scissor using, or whatever it takes.

My family has returned to Houston and the month seemed to fly by…I felt that we all did what we wanted to do and made the most of every moment. Now while in my sleeping beauty fog, it seems like weeks ago instead of days ago. The nausea is back and the very drugged feeling is back. I am doing everything to avoid the implosion. The weather is fantastic and I am thinking I will get out tomorrow, but gave into the sleep today. I will go back to dream of my nieces laughter, nephew’s hugs, sister’s smile, brother in law biking, parents hugs, Alex, Jim, and the nice cool breeze….

 

“Take responsibility for the energy you bring.” Dr. Jill Bolte Taylor

July 11, 2011

Wow, time flies when you are trying to recover days lost and maximize every second! I have had visits from both my uncles and aunt too! I have savored every moment with my family.  We had a spectacular dinner at the Ritz Carlton Raya with my uncle and there were some incredible flavors that I could taste! Of course, pushing myself to my limits came with a small price…I had a forced rest period. We made candles, went to Balboa Island, Long Beach aquarium, and I loved every minute. Yes, I passed out every evening, but it was worth it. The weather could not have been better and I love the foggy cool mornings.

I did have my small pity party with that teeny tiny violin playing, but it was short lived. I have learned to listen to my body and my goal is to gain some weight as I know this week I will be back to my nasty no fun nausea. I have also learned to move on and try not to get caught up in any frustration. It isn’t worth it. I just say to myself, “is this a problem that is worth this amount of energy?”. Most likely it is not and most likely it is the silly stuff that puts me over the edge. This is when it becomes the all about me-the selfish cancer me. I just try to take deep breaths and move on quickly. It is easier said than done as I am all about the details both small and big. Now, I can only deal with the hours or day ahead. This brings me to Thursday which I would rather not participate in the chemo matrix party. Since I have no choice AND for the first time in a long time, I actually have an appetite, I must go to find out my tumor marker number. I am convinced it is in the normal range. Who knew my body spoke to me with the answers I was seeking? With such a range of ailments, it is difficult to hear the truth of the message!

The real truth is this…responsibility for your energy…I do think Dr Taylor has a good point. I know Alex has this book about the negativity zapping your energy. Very true…we are all entitled to some moments, but it is better to look at the sunny side of things and “do your BEST!” (John Wooden). Feel the sunshine, smell the summer air, smile, hug your friends and family and make the most of your day, I know I will!

 

“The only thing that matters is who you are now.” Po in Kung Fu Panda

July 5, 2011

This is what Alex told me the other day. Alex has such an old soul. My visits to Hoag were something that I wanted to block out. I did not want to be among the sick (even though I am one of the “sick”). I knew when I woke up with a bloody nose that this was not a good sign. I tried to ignore it, but that night Jim noticed my hands and feet were too cold. Another sign that I could not ignore. My only thought was that I had to make sure I made it to Sofia’s performance at the Orange County Performing Art Center. Now Hoag has become the closet that I don’t want to visit. The colors were looking more dingy, but it was not the wall colors. The faces of grey, withered bodies, too weak to walk from the close quarters to the bathroom without help were something I wanted to ignore. I took a deep breath of ocean air (at least this is one good thing about Hoag Newport). I scanned the area for my favorite nurses, but did not see one of them. Yes, this was the holiday crew. Uh oh! They placed me in the room next to the tv. Unfortunately, I was battling the high volume of my partner next door with the soccer match.  I countered this with the high volume of Wimbledon. This may be good with the added grunts from the returns of these serves to avoid the whining and complaining from these patients. Where were my cancer buddy warriors? This group was downright depressing. Too much whining, too smelly, too loud, and just annoying. You cannot have visitors in this closet when it is packed. Yes, I needed platelets. Nothing surprising. I called my doctor to tell him I was mad and he just said over and over that he was sorry. I know he felt bad, but there was nothing he could do.  So, I kept Jim busy by texting him non stop. My nurse had issues with finding a vein, so I cried especially when she said she was going to “shove the IV in”. I kept telling her it was burning, but she said as long as it did not swell, it was FINE!?!  I looked at the clock and asked when I was going to get these platelets. Time was ticking and had to get to the OCPAC. My platelets were from Newport Beach. Jim sent me a text asking if this meant I was going to apply for OC Housewives. Was I going to all of a sudden demand botox and new boobs? Diamonds? Martinis? Either way, I had to get out of the place fast. Jim was sitting outside and he said he never saw me run so fast. It was definitely the adrenalin since my red count was not that great (hopefully the shot will kick in soon). We hurried to lunch and made it to Sofia’s performance. When I got into the car, I cried. It was too much seeing the sickness and the reminder that I am “sick”. Sofia opened the show with a brilliant song and I cried again. Jim asked me why I was crying and I said, “she is beautiful and her voice is amazing.”

The next day, back to the Hoag closet and thank goodness my favorite nurse was there. She must have read my mind and received my telepathic message. She put me in an area away from the sickness. She told me that she had a good feeling that I would not need another bag of platelets. She was right. My platelet number quadrupled! Safe, but no playing with knives, swords, or crazy sky diving. My red count was still low, but it should pick up any day. A great 4th of July gift! 4 times for the 4th! I have all the windows open at home to smell the summer air! I am off to hang with my family, the best gift of all. Enjoy the sunshine…I know I will!

“Make each day your masterpiece.” John Wooden

July 1, 2011

I am quoting John Wooden a lot…go UCLA! Seriously, I decided to read the Essential Wooden instead of my cancer books for a change of pace. I am also reading Bossy Pants which gives me a laugh every so often. Already July? What happened to June? The past couple of days I have been thinking about what cancer does to the people who love you. We try to laugh a lot to avoid the tears. When we cry, my nose hurts because of my missing nose hairs, so I try to stop fast. When you write me a note or email, I get to revisit your love and encouragement again and again. When you hug me, I never want to let go. When I see myself with now one side of baldness and the other side of tufts, I am reminded that I do have cancer and I know you are reminded too. I am in the moment and want everyone to be in the now, in the moment. I cannot think of months ahead and especially years. I can think of tomorrow, but cannot get lost in frustrating moments whether waiting in line or EV or dumb people. I have to let go of all of it to keep going. I also have to minimize my crisis and know my doctors are being my doctors. I have things to do which involve all who love me, so to have someone poke me again today to check my blood…it isn’t going to work for me.

Back to reality and the red for the red, white, and blue. I have all colors covered this year. I missing some red blood cells, nice white pale complexion, and blue from my bruising. This is the way to celebrate! I know I remember some other holiday that I wanted to avoid going to the hospital. The same thing goes for this missing red blood cells. On Thursday, despite my best efforts and visualization of the Pac Men NOT eating my red blood cells, but only eating my cancer, my blood counts were not good. I had to get a shot in hopes that this will stimulate red blood cells to go crazy. I am going tomorrow to have it checked again as my platelets when from super star gangsta blood to the “avoid all knives, swords, and even paper cuts.” I may need some platelets tomorrow. I am hoping that they may be from Maui or even NYC? I know it may sound like a strange request, but I could use a sniff of floral air and the noise of the city to get me ready for the next chemo.  All I know is if I need the blood, I better get it quickly so I get to see Sofia’s performance at the OCPAC. I guess I should have known I had this blood issue with my inability to talk as loud as I want without feeling like I am gasping for air. I did not have any major bloody noses, but got one this morning to remind me that I have a problem. Plus, in the late afternoon, I lost any energy I had. Yesterday, I gave into the whole blood crisis and took a nap. Today, it was pretty much the same with the exception of a couple of errands.

Besides the blood crisis, I have a new project which any boy under the age of 6 will like called, project poop or for the older crowd, constipation calamity crisis.  The recipes that I am getting from my doctors are making me almost believe that the coffee latte enemas may not be such a bad idea. I am eating vegetables, fruits, drinking a lot, plus every combination of laxative, stool softener, fiber, etc… Yes, this is the price I pay for not being nauseous! You cannot win this game of side effects. That could be a book title, “How to win the game of chemo side effects” .  I am starting to re-visit the anatomy class I took along with the nutrition class to look for some clues. Oh, I got it. When my hair rains, the calories consumed fall out with my hair? This is cancer digestion and it works backwards or upwards or does not work at all.  Once I figure this out along with the best recipe, I will document it and put it on the message boards.  Until then, gotta get some dinner.