Archive for February, 2012

“Focus on the present, and enhance your time and life now rather than always working toward tomorrow.” Dr Holden “Focus on the present, and enhance your time and life now rather than always working toward tomorrow.” Dr Holden

February 25, 2012

I will not waste my time on what happened with my blood draw. In summary, security was called, badge was thrown at me, tears were shed, quick recovery by lab draw employee, and future escorts to the registration by director/manager. It was a day filled with some strange energy force that was really trying to mess with my new process. I am on day 3 and let’s just say, it better be worth it. It definitely feels like the movie Groundhog Day, but with chemo pills. This is not easy, but I keep telling myself that I will have 2 weeks of freedom! I had a call today from my nurse who had a few tips and tricks for me. Hopefully, they will work soon as my head is spinning.  Of course, I had the news that my tumor marker went up some points, but I am not focusing on that…it could be the new lab or what they call “cell death”. Either way, until there is a trend one way or another, I am continuing with my full strategy of taking these pills.

In the meantime, I came up with my top 5 cancer comments that are really special to me:

1. From some doctors, “you are not making it easy to know you are sick since you are too peppy”.

2. You don’t sound like someone who has cancer.

3. You are so lucky to be wearing a wig, now you don’t have to have it colored or cut. (very true and not annoying, but can be annoying on a bad cancer job day)

4. I know someone who had your cancer…and she died.

5. My favorite is: the look, head tilt, deep sigh, look of pity and gigantic pause…the look when you don’t know what to say.

Off to sleep once again….

 

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“It’s a beautiful day, don’t let it slip away.” U2

February 23, 2012

Funny how this song came on the radio while driving Alex to the school for the first time on a Thursday since January. I did not sleep that great as I remembered the pills had to be refrigerated, so I assume that someone messed this up. Alex and I still had dance Thursday since it is a tradition. I love to make Alex laugh watching me dance (or so you think you can dance?). I definitely do not have any moves like Jagger! Of course, on the way to school, a neighbor cut me off, in the car line we saw parents yelling, almost one collision, and finally 3 cars would not let me yield out of the car line and actually sped up…then, one was a neighbor who I squeezed in front of and she gave me the finger, waved her hands, looked like she had some choice words for me….COME ON people, it is a beautiful sunshine day, nice and clear. IT IS GREAT to be ALIVE!!! Work with me you Canyon Vista parents…smile, deep breaths, breathe, wake up 4 minutes earlier, and try to not stress the small stuff!!!

Of course, just realized the pharmacy gave me the wrong phone number for the delivery service. Thanks to the internet, I found the number, called, and it just arrived in a cool pack. OOPS, it is missing 30 pills…oh well, have enough for one day! Back to phones after my blood test…IT IS A BEAUTIFUL DAY!

Climb every mountain, Search high and low, Follow every highway, Every path you know….Sound of Music

February 23, 2012

I have been up the mountain and was searching, searching, for my chemo pill! You would have thought I made up the drug in my kitchen and wanted to try it because it sounded fun. I spent yesterday and all day today until 3:30 when the specialty pharmacy said it would be delivered by 8am tomorrow. I will believe it when I see it! The easy part came after the team determined everything was a “GO!” and I took pages of notes about the dosage, the pills I should take after/before/during, the issues to look for, the issues to ignore, the method to the madness and finally, the comment that it is worth the try. As they told me, I can always go back to my every week at the closet. I had already determined that I did not want to go to the Hoag Cancer center for my blood tests. I talked to the Hoag hospital and they told me that I didn’t sound like I had cancer. Of course, I was thinking, what does someone  who has cancer sound like?? I explained that the last place I wanted to go was the cancer center. Yes, I have cancer, but I don’t want to be around other people who have cancer. I needed options. They were helpful and found that the brand new hospital at Irvine has a lab with 90 minute turn around and could set me up for weekly tests. YES! Sounds great!

Then, the fight for the pill started with the pharmacy adventure or should I say nightmare. One calling another pharmacy to the specialty pharmacy started this crazy game of telephone. I gave all my information during a 30 minute phone call only to call back to find that it disappeared. Second call, start the process again. I barely slept as I had no confidence in the process. This morning at 4am I called the specialty pharmacy which is in central time. Oh great, all the information that I spent over an hour on the phone had disappeared. First call, guy who just decided to breathe heavy without making any suggestions and listen to the silence had no options for me. I called back and got girl who seemed confused and had to start the process again. This led me to another girl an hour later who stated,”we’re working on it.” I explained that “working on it” was not going to work for me. I need confirmation, shipment date, tracking number, so I would be placed on hold again. I called back and explained that I could not drive when they suggested I go drive to find the pills. I also explained that this was not a blood pressure medicine. I have cancer and would they like me to go to the hospital. They didn’t need to know that UCLA has a chemo closet. I continued to make calls every hour from 6am until 3pm. It was delightful at 1pm to be told that they don’t think they can get the pill to me until Friday. What? I asked for supervisors and told them they are responsible for this gigantic error. I had names and times that I talked to all these employees. How dare they do this to someone who has cancer! How dare they do this to anyone (that is what I was really thinking). I really kept saying to myself, “what do the other people do?”…It really is awful. Could people who are responsible for such important expensive medications be this ignorant? The last call was the one that I almost wanted to laugh when they told me they would have the pill to me anywhere from 8am to 5pm? This was not a call to the cable company to fix my cable tv! I asked the person if she wanted to escort me in the ambulance due to disbelief that no one could understand after the 200th time that I needed the pills by 8am. When I did talk to someone with half a brain, she informed me that in 2 weeks, I should start this process again for fear that this insanity would repeat itself.

I talked to all nurses with a strategy for the pill. Go team chemo pill! I have got pills and patches for every potential ailment. I have nurses calling me on Saturday to double check that I did not implode from constipation or explode from other “stuff”.  I should be covered and am not looking at the short term of aches, pains, nausea, and more. I am looking at the potential for freedom of more than 2 to 3 days. I am looking forward to driving Alex to school tomorrow and not having that knot in my stomach and the sensory memory of the smells of the chemo closet with the images of those faces. Yes, I realize I look a little gray, but I try to put enough make up over the grayness to cover the cancer up! So, wish me luck, say a little prayer, and click your heels…I am ready for the next ride!

“When you think things are bad, when you feel sour and blue, when you start to get mad… You should do what I do.” Dr Seuss

February 20, 2012

We have been working furiously on my cancer job since last Tuesday. I had sent emails to many of the doctors I had seen, many doctors who had looked at my tumors under the microscope, and talked to nurses as well. Since my tumor marker did not move last week, there was a feeling that the chemo was absorbed in the tissues instead of systemic causing my arm to look like a drug addict. The possibilities were endless, a vein leaked or my tumor marker won’t move.  It was all very strange since I followed the data points up and down with each chemo. Regardless, the plan was to continue. I did talk to one doctor who was thrilled to call me “unique” after she had analyzed 100s of more tumors from other woman, I am still at the top of the charts. Oh, yes to be so popular! She asked if she “could have another piece of me.” I had to tell her there wasn’t any piece, but I would keep her in mind for the next time. She made some recommendations for 2 other chemo drugs to add to mine. I did put my cancer job aside to attend Alex’s field trip to the Griffith Observatory. As a friend and fellow cancer buddy said to me,”the Only thing we can control is to do the things that make US happy and the thing that makes us happiest is being with our son and seeing life through their eyes.” I had the best day! Even with a little rain on my beautiful wig, I was willing to ignore the strict strange behavior of the Griffith Observatory staff!

Unfortunately, Thursday did not go as planned. I was armed with special treats that were as cute as cute could be. I thought with my new pre-medication, things would have been better. My blood was on the border which meant that I could continue my chemo.Somehow, I had a drop in my blood pressure and had full attention of many nurses including my nurse/doctor husband who commented that I did not look good. With my infusion finishing, I had to get real air. The smells, the crowds, the place was not doing me any good. The pasty faces, the clothes hanging on withered bodies, the moans, the groans, were all too much. I went to the other office to wait for my doctor. With a plea for ice water, I went to the back room as the smells were too much. After waiting an hour, we decided to go to the other office to stalk my doctor since I lost track of time. Everyone insisted that I should lie down, so I did. He mentioned taking my tumor cells again for another try to see if they test positive for another gene. Eventually, one is bound to be positive. I signed a bunch of papers and he discussed the addition of the other drugs which (of course) have horrible side effects. I decided that we would wait to see if I needed them. I talked about changing my routine to the pill form of my chemo. He agreed to think outside the box, but wanted to get multiple opinions for dosage since I always have to push the envelope. This is all for my quality of life. If I can gain a few extra days, be home, not be in pain driving 5 hours plus, not see the audience at the closet, I am convinced this will be better for me. We left to attempt to get something to eat which was a bad idea as the closest place was the hospital lunch cafe. We timed it perfectly with all interns, nurses, fellows, residents eating at the same time. I sat down as I was still dizzy and feeling horrible. Of course, a nurse decided to whack me in the head so hard that my wig came off a bit. I was in shock and so was the cardiac resident sitting in front of me. He told her to apologize. I told her it would be nice (in my not so nice voice). She told me, “geez, what is wrong with you.” I told her what was wrong-that I just finished my chemo and she knocked my wig off a bit. She told me, “sorry”, but did not mean it. I told her she should watch her giant purse as she could hit someone else. She responded, “it wasn’t my purse, it was my elbow.” I proceeded to cry in front of this cardiac resident who told me that I shouldn’t waste the tears. I was more concerned that this nurse was actually going to treat patients. He told me to let it go and so, I did (until now!) . I had to go see the orthopedic doctor for my neck after this delightful lunch. He is a wonderful and funny doctor who informed me that unfortunately, this neck issue will take up to 6-10 weeks and I cannot rush this process. Luckily, we left UCLA and I passed out Thursday, Friday, and Saturday. I could not stay awake and felt it was better to sleep it off. I did get an email with my tumor marker and great news that it went down 20 points! Of course, I calculated this all out and this means that if the pattern continues, I should be done in June as promised.

Today, I did exit my house for Laguna Beach and the tide was super low, so we walked the beach. We ate at Sapphire for lunch which was packed and I ate every bite. It was a great day!

I know the next couple of days are going to be hectic since I have to get everything organized for the taking of the “pill”. This will require weekly visits to Hoag to check my blood if all goes as planned. Of course, based on my numbers for blood counts, I may need a shot or two. All I know is it will be worth all the planning and change to be at my house. (even if I am in bed) Alex jumped up and down and did his best dance in agreement for me to not drive to Los Angeles every week. Seeing his smiling face and his dance moves, how could I not try this chemo pill routine!

 

“why people break up, turn around and make up…Let’s stay together…” Al Green

February 14, 2012

I was prepared for the break up. I listed the reasons why the weekly trips to UCLA were proving to be too much. I listed the reasons for the break up even going to UCI. I had my argument with valid numerical points to show how much i disagreed with what he told me on Friday. Yesterday, with some nervousness, I picked up the phone to talk to my doctor. I had figured that he wouldn’t be sitting at his desk, but I was wrong.  I stated my case and prepared for the worst, “breaking up was hard to do”.  Instead, he simply responded that I was right and he agreed with my plan. I wasn’t prepared for him to readily agree. I had to focus on the facts that my tumor marker has stopped responding. It could be a fluke or it just could be.  I told him I only pretend and act like someone who is fine by dressing the part. I portray an image of who I used to be because I love who I was and I love who I am, but no one wants to see the true face of cancer. I see those faces at UCLA weekly and do not like what I see.  This past weekend when my pain was too much to bear and the lack of appetite could not be ignored, I showed my cancer face to my family. I know it frightened Alex as much as it frightened me. I had to fix this. So, I will go to UCLA this week for my chemo and get the pill form to take the following week. I understand that the side effects could be worse or hey, they could be better. All I know is the side effects would be at my home. I agreed to work out the blood testing issue since my numbers are low and low. I also will look at more local oncologists at UCI. I think the new plan will require a bit more discussion, but this is best for me to be as close to my old self as possible. Meanwhile, Jim has contacted doctors all over the world as he says, he wishes me to be well and will not stop researching. He is so clever finding email addresses from pharmaceutical financials and getting direct contact info for doctors who are studying gynecological cancers. He is a fake doctor like me.

I am understanding more of what doctors feel when giving bad news or news that seems to not have a positive outlook. My doctors have a heart that is what I love about them. When they struggle to find a positive spin and words come out that don’t make much sense, it shows they don’t always have the answers. What some of my doctors haven’t learned about me is that I am a problem solver. I always have been (genetic inherited) and I will find another plan. I maybe upset, but I move on. I do not ever stay on the pity pot long. I still laugh at the EVs who send me non motivating, all about them messages. Not that I don’t care, but I don’t have time for their crisis. I am in my own “crisis”daily, so would rather spend my minutes looking at my beautiful roses or watch the sunrise.  I love the cards  and emails filled with such love that I get daily hugs from friends who are close and friends who are far away. I love all the gestures both big and small showing who you really are…as special as I always thought you were!

There will not be a break up for now…but I am always ready to make a change if it makes things better for me, for my family, for my quality of life.

Let’s… Let’s stay together,

loving you whether, whether,
times are good or bad,
happy or sad,
whether time are good or bad,
happy or sad.

To his patients: “No one is more interested in saving your life than you.” Dr Nagourney

February 13, 2012

Unfortunately, this has been a weekend of cloudy with a stormy weather for me. I just followed the advice of a Dr Oz show I had watched earlier today and made a list of things I am grateful for. This list included some surprising basic things like finding a food that tastes somewhat good. There was some mystery solved with my last infusion. It came at a hefty price with both calls to nurses and doctors. It also scared Alex to see me in so much pain. The news that my tumor marker did not move an inch or it moved a quarter of an inch was both numbing and surprising. I decided to ignore the facts until last night which made for some slap in the face reality and composing of emails. I had to analyze the data, look at trends, figure percentages, to get some real facts to make a plan. I only sent one email with the rest in a holding pattern. I know what I have to do and what I want to do, but the logistics will need to be voted and discussed. In one email, I said this is my job and my cancer. I am not afraid to fight, but I will not make blind decisions. This is not a go with the flow type of situation. The weekly UCLA chemo factory clinic is proving to be a magnet of draining much of my energy and forcing me to feel the pain of  too many young people facing their cancer challenge.  There are many options to consider and some options that I will demand. I would like to try the pill form of this chemo and would like to have my chemo more locally. I would still see the same type of faces, but to drive 2 hours in pain in traffic every week is something that I cannot do to myself or to my son or family. I tried to be the old me and the overwhelming sights of sickness took my spirit and held onto it. I said words that I didn’t mean while in my physical pain and my fog. I need another method to my madness, another plan. I cannot find the right words as the fog is still with me. Today is better than yesterday, but not as good as tomorrow. I will soak up the sun as Sheryl Crow would sing!

“I visualize winning and always stay positive.” Eli Manning, MVP Giants quarterback when asked how does he keep his focus.

February 9, 2012

Since Alex is now my father and the expert on all sports, I will refrain from any football analogies, but I know Eli is right. This week like others went by too fast. I had a challenging week with a few meltdowns on the way. It was my visit to my new internist who jolted me back into reality which I tend to put in the back of my mind. She was just doing her job and is correct in guiding me to make all decisions now. The reality of my cancer, the history of my cancer, and the reminder that I need to change my advanced directive was too much to bear. As usual, I got up yesterday, looked at the sunrise, took a deep breath and a new day began. I had my dose of 5th grade student discussions which always makes me smile. The school is selling friendship grams which brings the 5th graders to the who likes who or the insecurities about self. My discussions were reminiscent of when I was in MIDDLE SCHOOL, but I listened and tried to understand (couldn’t help but to laugh). As a few boys told me, “Mrs. Triestman, you know who we like, right?” (girl ) I responded that I didn’t know. They told me, “Duh, we stare at her all the time.” Oh, yes “love in the 5th grade”….This kept me smiling all day despite a few hiccups from some students with disappointing behavior. All in all, I am “armed” and ready for today. I have lists on post its that will be attached to my forehead and a box of Hershey kisses in a heart shape for my doctor just to make him blush and entertain me. I do visualize winning as there is no other option for me. Enjoy the sunshine today and give a hug to those you love!

“I feel that honesty always works.” Bobby Unser

February 4, 2012

First, I want to thank all the teachers who have stimulated Alex’s mind and inspired him to think “big” every day. His thoughts on subjects both big and small continue to amaze me. His motivations continue to impress me.  To those teachers who completely understand how Alex thinks the way he thinks, I wish I had millions of dollars to send you all on trips to Maui, pay you the salary you deserve with endless budget for things you need in the classroom, and put a magic spell on those parents who think they should not be a partner in their child’s education. Also, an additional spell should happen on those entitled E.V.s who raise their children with disrespect and a similar sense of entitlement without a view of what is happening beyond the Orange curtain.  I also want to say to the “90 year old” ( Alex’s comment) substitute, please stay at home. Ms 90 year old substitute, you let my son’s mind wonder in the wrong direction and fill with such worry that he chose to work on writing his essay during the day. My son who would rather type out the phone book than hand write anything decided to work on his essay on why UPS and FedEx should buy the USPS?! He also made calls to me while at chemo and asked to have help to get his worries away. Luckily, the support team at his school extends to  outside the classroom, Alex was back to his 10 year old self by lunch. (or so I thought)  When Alex comes home, he is usually filled with stories of playground adventures, how he tried to prove to his friends why statistically the Giants will win, how his decathlon questions were answered by friends, or the stories of the drama of the day. Alex has always been the reporter since preschool when he would report about which friend ate his lunch or not. Yesterday, he came home to give me a giant hug. When I asked him about his day, he asked me, “will you ever not have cancer?”  and ” will you have to have  chemo for the rest of your life?” . My heart sank. I paused, took a deep breath and answered with, “I don’t know.” I told him again that I will do whatever I have to do and if that means chemo forever I will do it. He asked me, “what if you don’t make it?”. I told him again how much I love him and how he and Jim are my everything. I reminded him how strong he is and how strong I am. Then, he gave me a hug and told me about his day.

The meaning of life is JOY! Have joy, live joy, enjoy every minute, even in the difficult times” – Melany McAdams 1961 – 2011

February 3, 2012

This quote came from a dearfriends and is my motto even if my week was not as I really wanted. Dance Thursday came too fast with Alex’s dance moves to “move like jaguar” and “I’m sexy and I know it” made our departure a bit easier. I have known from how I felt this week, that something had to up. I love all my friends who continued to say I looked good, but my pale face and skin kept me thinking this is not my color. Alex told me I looked green several times.  This week had flown by like all the rest. I tried like a crazy person to get my cancer job out of the way. I had to talk to insurance and my VIP nurse. Luckily, for all my support team of incredible friends who went to the store for me and not once but many times since my brain is still not as clear as I wAnted. The worse part was the neck pain which I did not need to add to my ailments. The physical therapy took a lot of time that I did not have to spare. They did provide exercises which I was to do 3 times a day. I did them as often as I could.  In my spare time, I worked on our cruise excursions for the summer which was a nice escape. Jim decided to surprise me with tickets booked to Maui in November. I told him I thought it was too much in one year and his response was that it wasn’t , so let’s go.  Plus, since my white count was not too dangerously low, I went to Alex’s computer lab. They were working on excel which is my favorite. There was something about hearing 32 young voices say, “mrs. Triestman, I need you” that provided me a day of sunshine and invisible hugs as if they were saying, “mrs Triestman, I love you.” I love cheering them on and love that my brain can remember excel at all!  My three days of freedom were almost manic since  my fill in the blank days that I had of foggy and unfocused. I had to make calls, look at emails, look at piles of my clothes, read Alex’s messages to me, pick up my over $1k of drugs since we hadnt met our deductible, plus try real damn hard to make a grocery list. Luckily for my old self, I had a binder when I started this journey of what stores I went to and what I usually bought. After the manic 3 days, came the reality to do it all again.

Yesterday, we decided to drive the rental car which we were convinced was less bumpy on the road than our 4runner. Unfortunately, this was not the case. We called it the jigglator, which we were convinced that we lost a good deal of flub which was jiggled in our seats for 2 hours to Los Angeles. When we got out of the caR, it was as if we were on a boat as Jim and i continued to feel the movement. We arrived with a giant bag of treats and greeted with smiles from everyone. They told me that I have the greatest support system they have ever seen since working there, plus so many great friends who are talented bakers. I agree!

Then, the moment of truth, my blood work was done. My IV hurt more than ever and now I definitely look like a drug addict. While waiting for my test, my cell phone rang with the school number. Alex was calling and was worried. Unfortunatley, he had a sub who was 99 years old he said and did not  know what to do, so Alex was writing his essay. My interpretation for my son who would rather type than write anything was that he had too much time on his hands to think. He wanted our school office manager, but she was missing. I joked that he could get a hug and kiss from his principal. He made his requests of my friend he knows and wanted to see and talk to asap. I started calling and sending texts. Our office manager saved the day with my extra spies who came later to report back to me. He was fine at lunch. The results came back that my white count isn’t too bad and my platelets are hovering just on the border where I don’t need a transfusion. My red count is not good which explains my lack of energy and paleness of my skin. I need to get a shit to boost my own body to produce my own red cells. If this doesn’t work, I will need a transfusion next time. I left my infusion feeling more nauseous than ever. I wished I could have slept in the jigglator, but it didn’t work.  I came home to pop more anti nausea drugs hoping it would go away. I finally fell asleep,  but not before I saw and hugged Alex with all my strength.

This morning, not feeling that great with the effects of the shot and the chemo. My doctor and nurse called that my tumor marker went down 20 points. It is moving slowly, but in the right direction! Today, more sleep and no jigglator. I will work on trying to eat something! I will find the JOY no matter what!