Archive for March, 2011

Back to Anatomy 101…and not the T.V. show

March 31, 2011

Great news today from UCLA! I am double clear, but I guess we skimmed the other reports prior to these. I guess last time I wasn’t as clear as I thought I was, so I guess these drugs are really working. I thought they were working last time. Now that Jim and I reviewed both reports from November and this one, I am really really clear except for my new esophagus issue which guess what? Is caused by chemotherapy! Can I not get just a teeny tiny break in these side effect areas? In our review of all these reports, I had to revisit my days of anatomy 101 when some of you knew about my desire to get into nutrition or who knows what or as Jim says, “you should have been a doctor.”  After review of all the language and noting what was there before has vanished-POOF…we laughed again about the UCLA report unable to find certain body parts THAT WERE REMOVED during surgery?!?! This time, they actually wrote a statement indicating that because they were missing, they may have been removed during surgery. At least they did not claim my “missing” parts were found somewhere re-located to other areas of my body or like last report, they were just “missing” as if a mystery needed to be solved. Hi, is this UCLA? I found an omentum in my kitchen and it looks like it may be Joanie’s? Guess they should check that lab where my parts were frozen? Of course, this makes some good reading material and I need to print everything for a frame or put in my giant binder of lab reports and other tests. Unfortunately, we are out of paper, so that fun project will have to wait. Yes, we are still old fashioned here and without the printed evidence, I don’t feel completely satisfied.

Also, while waiting for the double confirmation, my team of doctors anxiously contacted me to persuade me from having any type of dental work done. Of course, to add to my stomach issues, esophagus issues, missing hair, skin rash, itchy rash, sores that won’t heal, is now my tooth issue. They acted like I was going to have a limb amputated. Guess I should now ask permission to do anything having to do with my body? If they only knew I was walking around the germ land of elementary school. Pssst, don’t tell anyone! I do wear my hair, but not a mask. I only exhale and never inhale. I think I am “safe” for the time being, but these doctors are not aware of the lack of talent I have in walking and talking. Again, if you saw a video of my Club Med tambourine dance, you would get the picture.  I guess these bruises on my legs and arms could have been avoided if I stayed in a chair and did not move. Again, I am reminded that I am in treatment for cancer and not some renovating project of an office in need of a great re-design! The other great news is that we put our deposit down for our Mediterranean Cruise! Now, to dream of the Greek Isles!

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Door bell ditch me…I dare you!

March 29, 2011

After our Friday celebration and emotional exhaustion, I was eager to sleep especially coming down from my no carbs to carb night. Of course, around 9pm  the door bell ringing began and the screaming of profanities started from what seemed to be a “gang” of kids. I was too tired to do anything and Jim was tired too. Of course, we had Alex pop out of his room wondering what all the noise was about…Saturday, our celebration continued with playing a tennis match (Alex is getting too good), taking a walk, and eating at True Foods. Again, you all know my bed time is around 8pm. Then, the door bell started ringing again and again. This time, I urged Jim to find the culprits. I had no hair on and debated to jump out and frighten these children, but I was thinking that my head looked like a bad haircut or someone shaving parts off, but not finishing the job. Instead, I tossed my wig on crooked. Alex yelled at me, “mommy, your head is crooked.”  I thought the crooked hair would give more impact of a woman gone crazy. I started screaming that I was going to call the police. This brought one of the door bell ringers close enough for identification. I have a school yearbook from last year and he looked very familiar!  He did apologize, but his friends continued to scream some lovely greetings to us. I told him that I would call the police, so I did. Who knows what will happen next, but I am definitely on neighborhood watch. Alex could not stop laughing at my crooked “head”. I will add this to my list of the top reasons not to care about wearing a wig. I am still smiling because I AM CLEAR, but don’t mess with me because I am still drugged and need my sleep!

Extreme Makeover Chemo Closet Edition

March 26, 2011

While waiting to be radioactive, I had a discussion with my technician. She and I were talking about the chemo closets in the OC area. She said that after hearing about OC cancer patients complaining about their chemo closet, she decided to investigate. She said while Newport Beach has the Ritz Carlton of maternity wards, it is missing the luxury chemo closet. It seemed completely strange to her. See I am not the only one who thinks this is ridiculous! By the way, in the short time since my last scan in November, Hoag has improved the process greatly with the patient in mind. Imagine yourself being told to sit in a dark room and “don’t think of anything”…oh, that works after you have had a no carb dinner and no carb day being in cancer treatment without eating gum or mints ALL day?! Now, they have you sip slowly this lovely thick fruity tooty beverage. You know my taste buds are screwed up when I am thinking that it doesn’t taste that bad. They have a mark where you are supposed to stop drinking and explained that you must only drink this amount prior to the scan as it must be in your stomach. They have all this down to seconds reducing your exposure and pain and suffering! Wow, to think that someone thinks of a patient first?!

Just a side note for all you low carb, no carb diet fans…I think as my Aunt Sylvia says, “everything in moderation” works best. You need some carbs. I was completely shaking, cold sweats, and blurry eyed. So, while we waited for the copy of the cd, we went to the cancer center for a banana and drink and found a swatch board with fabrics, tile, diagrams, glass samples, drawings of the new improved closet treatment center at Hoag. I think this will be my mission along my journey to fight for a healing center for all patients in the US. It isn’t right that chemo closets even in the OC are not healing. Cancer patients don’t have the energy or strength to fight for a more comfortable treatment place. I know I barely have the energy some days. So when I get “drug free” , I will fight for all those who sit in broken chairs and without soap, toilet paper, strolling musicians, ipads, ipods, kindles, and all the calm of a healing environment. Until then, I plan to get out in the sunshine and take a stroll with my husband! Make the most of your weekend!

Sunshine and Clear skies ahead! Scan is CLEAR!

March 26, 2011

After trying to reach all my doctors…who knew it was a “holiday”!  My internist who is off on Fridays called us as she logged into the hospital computer system and told us “all clear” except for some colon “issues” which is caused by chemo and/or Avastin. Rather have a colon issue than a cancer issue any day! Then, a call from my other doctor came who talked directly to the radiologist and confirmed “the all clear”! Jim did a happy dance which my mom wanted to see via video, but it was too funny to even record! Alex kept saying, “what is going on? are you crying or laughing?”. I am so happy even though I am not supposed to be around crowds of children since I glow in the light or even hug Alex. Jim took the risk and we hugged and both did a “happy dance”. Now, this weekend we will look at the dozen or so quotes for the cruise, so Ciao, Yassas and Görüşürüz!

“To laugh often and much;to win the respect of intelligent people and the affection of children…to leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded.” Ralph Waldo Emerson

March 24, 2011

I am laughing this week as I plan our cruise to Europe for 2012. I only was caught up in this analysis paralysis because of a brochure I received that included airfare, shore excursions, wine, tips, wine, did it say wine? When I start to read the details of each excursion, I stop myself and ask if I am wrong to plan so far ahead. When talking with my Mom, I decided no matter what I will go. When there is a giant will, there is a way. I cannot stop planning. That will not work for me.

This week has been filled with a lot of sunshine. I know you may have heard the hail or pouring rain, but that was just the weather.  My sunshine has come from those friendly faces who lit candles for me on Alex’s field trip to the Mission (I was so overwhelmed by this gesture that I started to cry-how embarrassing on a field trip?! Yes, and what was worse was when the docent said, “please remove your hat” I was thinking of pulling off my wig, but I didn’t!) . Some of you let me hang out just to laugh about the same ole’ story of complaining parents who always complain over nothing and do nothing to help solve their “issues”. There were some of you who gave me a hug or a fist pump saying, “just another bump in the road-you can do this”. Your emails, letters, and conversations have encouraged me to ignore the faint whisper of fear and focus on the now, today, this minute.

I guess I can forget the focus on the minute and the now. Unfortunately, tomorrow is prep for the scan day and luckily I re-read the instructions of no caffeine 24 hours prior. I am sure to have a headache as I need a little bit of caffeine in the morning even green tea.  No exercise either-guess I messed that one up last time. It is not that I am going to run a marathon, but never knew that new factoid. Plus, no chewing gum or mints. Has the scan changed since November? No one ever told me that one tidbit and I know the only thing keeping the lovely metallic taste  away was the mints and my scan was clear last time. Oh well, I will do what they say. Until then, I will keep planning Athens to Venice even though last night I was dreaming of the ship rocking back and forth like when my family crossed the Atlantic on the QEII and water was spilling out of the glasses (seriously), but I know the Mediterranean is not the Atlantic! Off to sweet dreams….

 

“Fighting cancer is like a giant game of “Mother May I.” It sometimes seems as if we take one step forward only to take two steps back. Setbacks are a definite part of the battle. Just remember, it is not the speed of the game that counts. Treat all setbacks as temporary, rebound as quickly as possible, learn whatever you can from the experience, and then move forward again.” Vickie Girard

March 20, 2011

I am definitely feeling much better than the last 2 times that I had my treatment. Slow is the ticket for less side effects for me. I didn’t even have to take the anti-nausea drugs. Two less pills is a big advantage with the pile of pills I take daily! Remember that my last treatment they forgot to take one of the blood tests that should be taken each time? It is a marker to see if anything is “brewing”. Well, they did take it this time and my numbers went up a bit, but not a giant amount like when I was first diagnosed. There is no definite answer of why the number went up. I got the message on Friday from my doctor.  After my initial shock, frustration, and anger, I realized that the next step is the step I would be taking in a couple weeks anyway. Plus, can I do anything about the past on what wasn’t done? I guess unless I had some time machine, I am out of luck for that idea. (You know I will do everything I can next time to ensure not only that my drip is slow, but that EVERY blood test is done.) So, on Friday I will have my PET Scan done a few weeks early as the doctor says, “we need to be aggressive”.  I cannot help but to be nervous just a little bit.  I know I am strong and can do what needs to be done whatever it may be or not be. At the Triestman household, we tend to think proactively about such challenges. For me, it is booking concerts, events, and planning fun things to do. It is even finding receipts for my tax preparation. It does not include major cleaning, but does include a lot of throwing away of papers. It includes using every bit of strength on Saturday to be with Alex during his piano competition even though I would have rather been in bed. It involves playing games with Alex, reading books with him, and sitting in his bed until he is almost asleep. It involves attempting to stay up late to talk with Jim instead of my usual passing out at 8pm. Last April, I could not take any steps forward as I was paralyzed with fear. Now, I just go on my merry way trying to think of how am I going to eat low carbs on Thursday!  I even took time to read my O Magazine (Oprah’s magazine) sitting next to my bed. Coincidently, an article about ovarian cancer and tumor profiling from a foundation called the Clearity Foundation in San Diego caught my eye. I immediately gave the article to Jim who read it and went to the website. Once I saw all the foreign language of pathology, I became blurry eyed. My own pathology report is almost 14 pages long and it might as well be in another language with codes and positive/negative indicators. While the rain falls, Jim is working on an online training while simultaneously reading information about tumor profiling. We are believers in knowing as much as we can…this method applies to purchasing a new fridge or reading about upcoming treatments or testing. We have a bit of family analysis paralysis, but it comes in handy for not leaving any stone unturned. It keeps us busy and helps us to not focus on the “what if’s”. It may seem completely contrary to some people, but it is what keeps my mind busy. You must take an active role in your own healthcare as we have seen that no one has “the answer” .  As I said before with my doctors, unless blood is coming from my eyes and my head is spinning around counter clockwise, we just take the next step, one step at a time.  I will take one day at a time and make the most of today.  In the meantime, I ask all of you to send your positivity towards me and send me those virtual hugs. Next week, I may not be out and about like I usually am, but it is only to avoid the response of the “I’m fine” because I am trying so hard to be fine and be strong for myself and for my family. In my heart, I feel as if it will be “fine”, but I do have my moments. So, instead of having my moments in public, I will have them at home.

Leprechaun was a sign of what was to come….sabotage, but lucky in the end

March 18, 2011

We were approaching UCLA when I spotted a little person (seriously) in green ensemble with St Paddy’s accessories running across the street. Leprechaun siting! Then, almost out of nowhere was a  dressed in green cyclist with her green butt floss showing pedaling what looked to be “after the leprechaun”…Strange and I should have taken it as a sign. Jim and I walked eagerly to the upgraded “first class” suite and saw a giant sign stating, “all infusions will be done in suite 550”. We ignored the sign and walked into suite 510 and asked the receptionist about my appointment. She was very sweet and said, “honey, they tell me last minute and we are short staffed, so you are in the other suite.” Jim and I walked slowly into the stinky old other suite. Downgraded already and I had an email stating that this was not to be the case. No worries, I was told the internet works now. While waiting over 40 minutes, Jim pulls out his laptop. Nope, no internet. Same as before, so I quickly send an email to the director with my phone. Then, suddenly 2 girls (seriously girls) walk into the waiting area with a card for me. The director is sick, but gave us free parking. Yipee, Viva Las Vegas. It was nice of him because what could he offer, some saline or tissues or anti bacterial soap. While sitting in the waiting room, I asked Jim if he thought it was brighter in there. WOW, a new lamp with a lovely white lamp shade. Where did that come from? One improvement.  Jim had a conference call scheduled, so I asked who was my nurse, but no one knew…uh oh. Then, the door opened with the “bad nurse”. I told Jim that it better not be her. She was from 6 weeks ago and refused to listen to me about a slow drip. I had sent an email to my doctor to request that I never get her again.

Finally, I am taken back into a room to see my doctor.  All of a sudden a nurse appears (I have never seen her ever in the entire time I have had treatment) and asks if she can start my IV, but of course, never introduces herself. I boldly state, “no, I want to talk to my doctor first.” I begin to get emotional and Jim says, don’t worry I will be here and help you get a good nurse. I cannot help myself. I do not want to have the same situation as last time and considering I have lost some weight and am not in my “normal” state for getting my next treatment all due to the last “oopsie” I would rather have a nurse who knows what they are doing.  My doctor enters the room. I start with my list of complaints and ailments. I am sure they sound like nothing compared to some patients. He looks up and says, “you struck a nerve with your chain of communications.” Hmmm….I joked and said, “is a photo of my face posted in the staff lounge with an “x” across it?”  He agreed with the facility issues, but implied that I am the only one who cares because most people are in/out of the clinic in maximum of 6 months. Wow! He is too busy to notice that every time I am there with new patients or the 6 monthers that people complain, cry, faint, yell, or look so beaten up. His job is to heal and he is doing that, but he needs to open his eyes a bit more. I could tell I “bugged” him, but too bad.  Yes, I criticized their “home” and lucky for them the doctors are incredible because no one will want to “borrow an egg or a cup of sugar” from this “home”. He said he put a sticker on my chart and Jim explained calmly about the nurse and how I want to get a nurse who knows how to handle a slow infusion. We also mention that we never got my blood test (the one that measures if there is something brewing as far as potential recurrence). He walks out and says he will take care of everything. He also states most of my complaints are side effects that 30% of patients get. If they are not manageable, then we go to reducing dosage.  Next,  he hands Jim the blood test taken 6 weeks ago. Jim walks out and doctor walks back in and smiles stating that they will run the test today. Oopsie!  Okay, what would come next? THE BAD NURSE walks in and she does introduce herself and I said, “nope, I had you before and you did not do a slow infusion”. Instead of resolving this, she has to make her argument that it wasn’t her. I tell her that I sent an email to my doctor and she can ask him. With this fact, she states the names of the nurses that are here today and I claim 2 of the bunch who I know to be the best. She walks out.

My luck starts to change (yes, the leprechaun luck is coming) and my favorite nurse walks into the room. Yipee! I hug her and tell her we are so happy. Jim and I are thrilled. She is the best (in fact she is the charge nurse) and asks me to pick a chair. It is a full house. I pick one in the middle facing the wall and sit down only to flip backwards a bit. I laugh since in my “communications” I had stated “broken” chairs and was told there are no broken chairs. With this chair, I am unable to recline the chair or the nurses would not be able to get to the patients in the corner of the closet. Plus, with all 3 visitor chairs in the closet full, I offer Jim to sit on my lap getting a bit of giggles from the other patients. I guess I should have mentioned the flip backwards almost eject effect and broken really means split in 2 pieces or more? Jim has to leave and is reassured with my favorite nurse. Guess the one guest per patient does not really apply here.  But hey, a pillow is in every chair?! Hey, 2 new anti bacterial gel dispensers!  Drum roll please, the manager of the office is cleaning the toilet?!

It is a full house and Margie arrives to see that there is no seat available. When the patient next to me leaves, she attempts to sit in the chair next to me until minutes later the next patient arrives. She also gets the flip backwards effect almost like a spring toy. With some switching, a visitor chair becomes open and Margie quickly takes the chair. The chair with the broken cushion is still there and the women does the giddy up move to get herself out of the chair to leave. I am unable to put my tray up or there will be no room for my IV. Oh well at least I have a chair. My new neighbor is a woman from Japan who tells Margie and I that she is so happy to hear from her daughters who live in Tokyo. She has two grandsons and wants them to come to California. She is very sweet and explains she cannot hear so well, but it is due to age. She gets up to see the doctor and her chair is taken by another patient. Margie and I were laughing as usual and I was 100% better with the slow drip even able to go to the bathroom (clean bathroom alone). Unfortunately, I could not unplug myself, but thanks to Margie who went under and over cords, around the back of my chair, unplugged me to safety of the toilet. We did a little dance move together as I untangled myself with all my cords and IV. Guess if she wasn’t there, I would have had to have a nurse dance with me? Minutes later, all chairs including visitor chairs were taken by patients getting infusions. Our Japanese friend was one of them. How could this be? She even offered to sit in a rolling stool, but was told by my nurse that it wasn’t safe. These visitor chairs were safer, but had no comfort. So, Margie stood, for over an hour!! Luckily, this face the wall chair was under the vent, so we had some air. The bad nurse proceeded to “push” the patients out of the chair and said, “good, your done”. She tore off their tape with some little cries of “ouch” by the patient. The chairs were offered to the next patients who had been waiting a long time. One of the chairs was the broken cushion chair or should I say, cushion with no support preventing the patient from getting up once they sit down. I was almost done in the chemo closet factory when a man arrived with no throat and I was anxious to leave. I told my favorite nurse how perfect my infusion was and hoped she wrote every detail down. She replied, “I always write it down, but it would help if they read the chart.”

While waiting for Jim in the waiting area, Margie and I noticed another new improvement. The toilet key! The toilet key for the hallway toilet had a bright green polka dot bucket attached. Margie said it really brightened the area and gave it a nice cheeriness. Overall some small changes and the director left a message at home saying he still would like to meet me and would let me know who he is giving the info from my email. I was definitely drugged at the end telling Jim to turn right when I meant left and making no sense. I could not find my words and usually the wrong word came out.  Today, I am a bit nauseous, but not as bad as last time. So, my luck changed thanks to the green butt floss sighting  chasing the leprechaun or was it just the leprechaun?

 

Downgraded, saw a leprechaun, and 3rd nurse is a charm

March 18, 2011

More later, but just to let you all know…downgraded, it started out rough…I ended up with my favorite nurse! Off to eat some soup and bed for me. Many funny details including the leprechaun siting later. Glad it is over!

“You have to learn the rules of the game. And then you have to play better than anyone else.” Albert Einstein

March 16, 2011

Tomorrow, Wednesday begins the process again and today I noticed the ever present rash on my hands, but this time it is barely visible. Gotta love those steroids! Every day I meet someone who knows someone who has been diagnosed this year with cancer. It seems like ages ago that this journey began for me and how I freaked my dad out with one of my drug induced days of screaming, “I cannot do this.” Now, I am doing “this” and I really don’t know how I am doing “this”, but I am. I visit message boards to see how the other half “lives” or handles the chemo and give my recipe to avoid nausea with all the drugs that I have, just hoping I can spare someone that horrible feeling.  I pull out my binder of recipes for cocktails for a more successful chemo treatment and respond to questions about dosage and read about foods I ate and try to eat. All I usually say is that even though your taste buds are whacked, you have no hair, you have to draw on your eyebrows, you really need nose hairs in the winter, you really have to keep your strength up and eat. Eat with your eyes closed, eat small bites, eat what you feel like with the exception of Ho-Hos and Twinkies, you should be fine. Of course, my big message is always make the most of every minute and try not to freak your dad or your mom out. I tell the people I meet that they should look at me and know that if I can do it, they can too. It is worth it even though it is completely annoying and a big gigantic inconvenience.  What is more annoying is daylight savings time and even more annoying is the fact that people are oblivious to what is outside the “bubble”.  I keep saying that we should take a moment to think about what we can do today or in the case of a cancer patient, what we can do in this hour or even 4 minutes. Never forget we all have our “issues” .  I have no patience for someone who sweats all the small stuff. In attempting to get my stuff ready for tax time, I see the sea of bills, pills, and other assorted new fun cancer related deductions. Too bad most of this is not deductible! What about a cancer credit? Come on IRS, work with me. The make- up has to be a deduction? The new clothes, new accessories, footwear for combat in the closet have got to be deductions and I should be able to count them twice? Cancer credit, right? I don’t understand why there isn’t a cancer double deduction or cancer credit?  I do understand the importance of today and every day and hope you do too.

“Success means having the courage, determination, and the will to become the person you believe you were meant to be.” George Sheehan

March 15, 2011

On Friday afternoon, I had a conversation with the Director of Patient Affairs. I was armed with my list from patients of almost all the major cancer centers of the US, plus a few others. Of course, if you could read my writing, you would win an award! He listened and agreed that cancer patients need a healing and comfortable place to get their treatment. After explaining that a harp would definitely not fit into the current closet and that I wasn’t expecting strolling musicians or even a mariachi band (that would be hysterical), I would be happy with simple adjustments for a clean comfortable closet experience. I also explained again why there isn’t any wi-fi and he thought it was “fixed”. During our conversation, he reminded me what a great person I am for having taken the time to make this list (damn straight!) and think of not only myself, but all patients. He said this was a first for him in conversations he has had with patients. I always like to be the first especially in this category, but not the weird drug side effect category. He asked me if he could meet me at my next treatment. Sure, why not? I am hoping to be fully dressed in combat gear (not for him, but just in case the chair police are there), so forget my relaxing comfy outfit. That outfit definitely did not work to my advantage last time AT ALL! He also asked me to put in writing all this information in an email and then, even offered to take a copy of my hand written notes, so not to trouble me. Not one ounce of trouble, since I am thinking anything in writing will help the cause for a better chemo closet now and in the future. The kickoff for my weekend was almost a touchdown for sure.

It was Jim’s birthday, so we went to see Wicked and strangely enough at the end of the performance, they were collecting money for breast cancer and ovarian cancer. We really enjoyed the performance and Alex liked it too. I had seen Wicked at the Pantages which is a different experience, but I was happy to see it again with Jim and Alex. I also went shopping with Jim for his birthday. We definitely found what he needed and laughed a lot that we were shopping during our free alone time while Alex was at a birthday party. So, this week is my countdown to the closet and meeting the director. I have plenty of time to pick out an outfit and I will make that happen. I have been not feeling as great as I usually do by this time, but hoping to have an answer this week for this too. Yes, I still have to make an appointment for my PET scan, but I doubt they are booked solid, so I will add this to my list to do….Perfect sunny weather, I hope to get outside soon. Until then, I am so happy that I sent my list to the director as now I really know that I did all I can do for this week. You know I am not finished yet with improving the chemo closet….