Archive for April, 2011

“Does it tire you or does it inspire you? Ask yourself this very important question and act accordingly.” Kriss Carr

April 28, 2011

This is Kriss Carr’s daily mantra and I am committed to follow these few words. Today, I have been a bit tired, but somewhat inspired. I just need to find the balance. Today, in my conversations, there were those who have lost all forms of sanity and those who are just on the edge. There are also those who inspired me and motivated me to keep going. So, as my mind becomes a bit foggy for my closet visit tomorrow, I was reminded that I did not get a confirmation call. Could this be that they moved and forgot to call me? Upgraded me and thought I did not need a reminder? Jim tells me that I can keep dreaming. I do have an outfit for tomorrow with all my new birthday accessories. So, I will be wearing 5 necklaces and 5 bracelets. This way I can provide some musical entertainment when I visit the toilet with my jingle jangle, right? I think I made the most of every moment today with the exception of sharpening 400 pencils for the STAR testing for our school. It did allow for some daydreaming until our school custodian advised me to pay attention to the blue light on the sharpener indicating the pencils were “cooked”.  I think I should print out this little mantra to remind myself. You should all follow this too. We don’t have time to sweat the small stuff or waste time on those emotional Debby downer vampires that suck the energy right out of you. So, as Aretha Franklin sings “while combing my “hair” now, and wondering what dress to wear now, I say a little prayer for you. Forever, and ever, you’ll stay in my heart and I will love you”….sweet dreams my friends.

“For bees, the flower is the fountain of life; For flowers, the bee is the messenger of love. ” -Kahlil Gibran

April 26, 2011

While dining at Sapphire Grill, I had the best seat with a direct view of the ocean and my husband! We had great food as usual and were very happy that we did not try some place new. When we arrived home, I was surprised by the flowers and gifts waiting for me on our porch. What a nice surprise! At the moment I bent down to gather my loot, a tornado of bees swarmed my rose bushes. It was a strange sight to see and our only thought was to run inside. I needed to pick up Alex and noticed underneath the rose bush was a basketball size ball of bees. It was so strange looking. I called the Bee Man when I came home and he explained the behavior of bee swarms and told me to enjoy nature. So, that is what we did! Was it a gift from nature? Did the bees know of my florist inside my house? Am I the flower and the bees knew I needed a lot of love today to make up for last year’s birthday drugged after surgery  at UCLA hospital for a week.

It was a great day and I felt the love from all of you! Walking to school, I heard the chorus of “happy birthday” wishes and it was great feeling. The weather was also fantastic and again I appreciate all of my family and friends so much!  Tomorrow, back to my cancer job and I will pull the reports, highlight the areas in question for my doctors, and continue my celebration until I enter the closet!

“When you stop feeding and supporting cancer, it can, and sometimes will, collapse. You may wake up one morning and realize that it has been minutes, hours, days, weeks, months, or year since you thought about it. You are in control again.” Kriss Carr

April 24, 2011

I do feel in control and I can honestly say that I am on the hours without thinking about cancer. This past week, I have been using every minute as if I will be so drug induced next week that I will be unable to do a thing. I know this is not the case, but I like to plan ahead. I managed to walk Alex to school which was more fun for me than for him (he barely knew I was walking down the hill). I even managed to walk up the hill even though it took me longer than it should, but I did it!  I planned meals and made lists. These lists came from inspiration from the Crazy Sexy Cancer Survivor: More Rebellion and Fire for your Healing Journey. I will share these lists on my blog, but now I am not in the “mode”. I think this week has been for me a week for reflection as last year I was having surgery before my birthday and on my birthday there is a lovely photo of myself in the hospital bed. I still ask Jim why he took the photo, but he tells me that I told him to do it. (I am sure I did!) I cannot believe a year has passed! I am not sure if it feels longer or shorter, but it just feels strange.  I have had my tearful moments this week, but more for appreciation of family and friends and less for the situation. It is amazing how many beautiful things we notice, when we take the time to look. This has been my week. I took more time talking with friends, calling old friends, being with friends who I don’t see often enough, and listened. I listened to the sounds outside and listened to Alex. What I didn’t listen to was the messages of my body, so I collapsed each night before Jim came to sleep or while Jim was talking (oops!). This has been the first time that I did not feel the burden of the drugs so much (or I choose to ignore most of the symptoms) and I wasn’t consumed by the “job of managing my cancer’.  What I could have done without is the unleavened bread! I did enjoy the 2 Passover dinners we had with our family (just Jim and Alex) and with another family. It made for some good laughs and a lot of entertainment especially watching the kids do a song and dance routine.

On another note, Alex had quite a week. It was filled with more ups than “downs”, but it was a crazy ride. Alex is on a military committee (support the military) for PAL (peer assisted leaders) and he has taken this “job” seriously. He has done research and made lists (which we had to enable his printer on his computer to print). The only thing was that his committee quit after he showed them what his “plans” were (sounds familiar!). He decided to present his ideas to the PTA and bribed his friend if he came that he would miss class. He did a great job and the Principal was so impressed that he asked to meet with Alex to add more ideas. So, one day I picked up Alex and he said, “Mom, I am exhausted. I had to make 4 presentations to teachers, students, and the Principal!”. He managed to get support from everyone and he was told he would get a committee somehow. At the Friday flag ceremony, the Principal announced Alex Triestman and his Military Appreciation Month of May ideas. Alex was so excited even though he said he thought that no one heard. Well, I heard it and I could not be prouder. We all are so proud of him. I know I could not do this type of thing in Elementary school. Of course, one of his teachers told me, “you just weren’t given the opportunity”.  On Alex’s “down” moments, he addressed his ongoing concern for not being called when he raises his hand. For the past 11 days, Alex has kept post its with tally marks for each class including music, social studies, and art. He presented his homeroom tally for 11 days. He was only called on 3 times versus 25 times in math. Evidence works great! What a great idea!! I told him to solve his own problem and he did!

So, it was a good week. Since next week is my birthday week festivities, I will have to plan ahead for my closet outfit and also have to review those lovely reports. This way, I will be prepared to get back “in the race”.  Have a wonderful Easter for all those who celebrate and Happy Passover! (it is almost over-yipee!) Remember, take time to notice the beautiful “things”!

Handbook for Chemo-the REAL story!

April 15, 2011

These past few days I have been getting calls and emails about friends of friends who have cancer and are having trouble eating, sleeping, “hair issues”, nausea, or just those women who think they may have something going on, but the doctor isn’t listening. These handouts, brochures, glossy photos of smiling faces telling you what to eat or drink during chemo are fakes! No one really tells you about the disappearance of hair EVERYWHERE which as I have said does have its advantages in the summer as far as shaving. If you are living in the East coast during the winter, breathing through your nose will be extremely painful and your eyes will water. Dryness everywhere can have a variety of remedies. So where is the real book?  I hate to say I have a top 10 drug list, but for nausea I definitely have a top 3: Sancuso patch, Emend, and Zofran (to take the edge off, but never did much for me all alone).  There are also some key supplements that despite my original belief of stinky pills, I think they do work. Seriously, it should be required that once you “sign up” you get this kit sponsored by pharmaceutical companies because I know they are making a TON of money off me alone. When you have a trifecta, it is triple the money or at least it seems like it! This kit would also contain a beautiful wig in the hair color of your choice, moisturizers, taste buds that you could apply on your tongue, nausea drugs, dental products by Biotene, AND an eyebrow stencil kit. I don’t thinking I am asking much, but EVERY cancer patient should get a vacation trip. I am not thinking cruise around the world, but just a weekend away (okay one night at a wonderful hotel with room service).  I still laugh to myself as I tell one friend of a friend who is complaining about her stomach issues since she started chemo that you just learn to live in the potty. You can enjoy all the comforts inside the potty with potty texting, potty pad (ipad), and beverage. You can even turn up the music or tv. Sorry for the bad visual! Doctors just tell you, “it is a side effect of chemo”. I just want to know what isn’t a side effect of chemo. I am happy that I am at the phase of being some help to others especially since I have my handy dandy notebook of each reaction for each treatment. I did block out most of the reactions with the exception of some horrifying ones (like my out of control texting day or my feeling of having a heart attack day). Instead of the untold story chemo handbook, it could just be a top 10 list. So after my top 3 nausea drugs, it would be my hair(s) which would not have been possible without the help of my cousin Kim in NYC! Then, the eyebrow tips from  some REAL experts, plus the eyebrow stencil kit would be number 5. Digestive enzymes would be up there too otherwise, I would really live in the toilet (honestly) and I think they are part of the reason I kept my weight on. By the way, this list is just a thingy list, not a people list because that would be an entire novel in itself. (the family, the vampires, the stalkers, the lovers, the best best friends, the chefs, the drivers, the playdate-rs….)  Combat boots or other critical footwear is necessary. (#7)  Accessorize  (hats, jewelry, scarves and have a good role model for this) and this will give you happiness and take away the emphasis on the fact that you have no eyebrows or eyelashes OR HAIR! #8. Number 9 would be the other drugs, they may work for some, but I am a light weight (Ativan made me crazy and I slept for 2 days AND that was part of the cause of my text-a-thon) Of course, there are the ‘cets (percocet, darvocet), vicodin, oxycodone, and xanax which I know some people like to sprinkle as seasoning on food. We can’t taste anything anyway, so I doubt it would add any particular flavor, but….Number 10 should be something big, but I can only come up with any beverage you can tolerate. For me, it was and still is, lemon, lemony water. Chemo did not kill those sour taste buds, but it takes a lot of lemon to do the trick. I could continue this list all night, but instead will go to sleep.

What Makes My Mom Special by Alex!

April 12, 2011

http://www.facebook.com/OvarianCancerResearchFund

Good to know that he wasn’t sending emails to “strange” people…he is more technical than me! Such a wonderful boy!

 

Lost and FOUND!

April 12, 2011

Tonight I just received an email from the tumor profilers (sounds like a Sci Fi episode).  The word on the street is that they seem to have found my “parts”. It seems so funny as if they were in the “lost and found” at UCLA.  I read the tumor report which was filled with colorations for identifying some of my body parts. Who knew body parts could be so colorful? I keep wondering if they put a notice out like “Lost 3  tan pink body parts with yellow fluid last seen in the OR #2 on April 22nd”…if found contact ???  The only concerning thing is that they told me in this email that it would be great if I phoned tomorrow. I guess once the parts are found there would be a chance that someone would send them on a “vacation” from the lab or who knows! Once the tumor profilers have them, it will be interesting to see what they find out. I am sure a lovely paper trail will come from all of this adventure. I could even write a book on the adventures of my tumors. I am sure Alex would think it would make a great graphic novel told in the tumor’s point of view.

I am almost feeling back to a less drugged state. It seems too good to be true, but I must seize the moment by walking to school with Alex. Of course, Alex is now at the age where he would rather have me walk far, far, behind him and not with him. How embarrassing! This works out to my advantage for the Jog A Thon this week. Back in first grade, it was all about jogging with Alex and now I can happily watch (hopefully with dark sunglasses and a disguise) from the sidelines.

I cannot believe it has almost been a year since those body parts were removed. It seems so long ago or long enough for tumors to get lost. I am glad they are gone and even happier that I am clear. I really do feel as if I can see the finish line although it still is a bit foggy for me. Soon, the fog will clear!

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.” Lance Armstrong

April 10, 2011

You know I have said before that I cannot stand the thought of children facing this fight of cancer. I still cannot believe that some children take the same drugs as I do and I can barely handle these drugs. On my many missions of doing what I can for cancer patients especially in my “Extreme Makeover Chemo Closet Edition”, I also want to do what I can for childhood cancer. This is why I signed up for the Pediatric Cancer 5K walk at the Irvine Spectrum on May 1st with my family and welcome anyone in the area to join us. A clever friend thought of the name of the team, “Just Tuff Enough” made from the initials of our names, plus means exactly what it says…  Here are some surprising statistics:  1 in 300 Americans will be diagnosed with cancer before the age of 20,  each year cancer kills more children and adolescents than any other disease, the incidence of cancer among children in the U.S. is rising almost 1% per year, every school day, 46 young people, or two classrooms of students, are diagnosed with cancer,  and only 10% of the money budgeted by the National Cancer Institute is directed to pediatric cancer research. For more information, check out:

https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=437204&supId=325022387

It is a sunshine day (okay, not the Brady Bunch song who knows why things pop into the mind…) and we will go visit the beach for our last day of spring break. I am a little nauseous, but a little ocean air should cure me. Looking forward to some nice oxygenated ocean air!

 

“Triumphant patients refuse to be victims. Instead they take charge of their own care.” Greg Anderson

April 10, 2011

So, I am triumphant, but this does not mean I have not understood what is involved in loving a cancer patient. It is a high price to pay and I appreciate all your love. Every success is as much yours as it is mine. I am reminded of how this has impacted my family. My husband has been on antibiotics for a year. That is a story in itself.  When seeing the print out of all the antibiotics he has taken over a year for his doctor appointment, I burst into tears. I think of how he has juggled all the information that I did not want to hear or that was too much for me to understand in my fog. I think of him working so hard and travelling even when he knew I didn’t feel well or he didn’t feel well. When I hear Alex say that he worries about everyone he loves as we reminisce about Uncle Max, I know his worry is too much for a 9 year old. When I think about my mom flying out here even though I told her not to, I know how hard it must be to be a mom of a daughter in cancer treatment.  When I think about my lashing out at my sister, just because she was here, I know it isn’t easy. When I see Margie every 3 weeks, we re-live the automatic nausea that fills our bodies as we enter that closet. I know we both would rather be elsewhere, but manage to laugh and give each other “the look” when we see what is around us. When I think about all my friends, I miss the way things used to be, B.C. (before cancer).  As I am told my white count is too low and I should avoid people, I think just the opposite (even though I will hibernate for a bit to avoid close encounters with large crowds of coughing people).

This brings me to my taking charge. As usual, I am back on my focus of better food for my body and Jim must now eaten gluten free. Since being able to eat food (I still cannot taste sweet, but sour works fine), I have not eaten that much beef or chicken. The whole eating thing is too complicated for me these days. Once I get to Monday, I should be back to a normal-ish pattern. When I was getting my weight for treatment, I seemed to have lost 2 more lbs, but I am sure they were pounds lost from my elbow because everything else seemed the same. Every time, the nurse asks me like she hears my mom, “are you eating?” and I respond that I think I had different clothes on last time. My rationalization never seems to work right and I usually end of saying something about last time I was weighed in just a towel. The nurse usually responds that they don’t need to see that…hmmm….show time in the closet? They don’t want to pay for entertainment, so this may work and they haven’t seen anything until they have seen me doing my tambourine dance with a coconut bikini top.

Back to the closet visit, I definitely am not feeling as bad as before…could it be the slow drip, the positive energy, the increased oxygen flow, the fact that it was not standing room only or ??? All I know is one of my fellow closet mates told me that she never drinks anything for fear of a stinky toilet. Terrible! Another closet mate complained about the chairs, but was told the same thing as they told me: not broken. These closet mates also feared that there was a poster of their faces somewhere with darts or their charts had a red flag “warning, difficult patient.” They had concerns that they were taking too much charge of their care, but I told them that there are so many patients who need doctor help now. We are not those people. We have to think of all the little things like reminders to do a test, reviewing labs, finding your missing body parts because there are just too many others who need so much more help. We used to be there and now we are in a different place. As we watched a woman being carried to the bathroom by her husband, we all felt her pain and wish she wasn’t where she is now.

I am happy today to avoid the coughing people and pick strawberries (or rather watch Alex pick strawberries) in the sunshine and enjoy the fresh air. There is something to be said in wearing my rain boots and walking in a muddy field with the scent of strawberries!

“Fear doesn’t defeat cancer;empowered treatment defeats cancer.” Vickie Girard

April 8, 2011

Here is the brief update…after waiting almost an hour, I got my 2nd or is she my 3rd favorite nurse? Either way, she knows the slow drip as she was the first one to recommend it! Besides not being upgraded (reason being was that the “bad” nurse was in the upgraded closet). More on the conversations later, just suffice it to say that I AM NOT the only one who notices the dirty bathroom, dingy room, and terrible facility! We had a team of pleasant powerful patients today! In the closet today, there were women who asked questions and did not stop. Funny thing is that instead of cramming us all into the closet with standing room only, they used the upgraded closet and split the patients between rooms. WOW, someone is starting to think! If they could only get rid of the chairs, that would really make me happy. I think “THEY” are listening. In the words of my fellow empowered closet mate, cancer patients don’t have the energy or time to speak out as they are in “the fight for their life”. So, this just pushes me harder to voice my concerns when the opportunity presents itself. Yes, the bathroom was cleaner today, but I did change the toilet paper roll. I also had to have Margie unplug me as it was virtually impossible to exit to go to the bathroom. As I under the influence, I will stop typing before I confuse my words like I did when talking to my mom about the necessarily (instead of necessity). I guess it isn’t as bad as the “menstruation” instead of administration. I did not say that, but we heard it on the radio in Ohio a while ago. I am starting to get blurry eyed. Good night! Happy for my slow drip!

“And when you’re in a Slump, you’re not in for much fun. Un-slumping yourself is not easily done.” Dr Seuss

April 7, 2011

To un-slump the slump, this is my focus today. I almost have it, but not without a lot of effort. I blame it on the drugs, again. I was wondering why I called someone “Ion” instead of “Ian” and said someone was from Hebrew instead of Israel. Things were a bit blurry today as I am preparing for my visit to the closet. Unfortunately, my doctor is in Europe now, so I am almost “on my own” as far as the doctor situation as he is the one who is more comforting and hand holding. I do have my cousin hand holder and entertainer who will help pass the time. The real issue is whether my face is plastered with an arrow in the staff area OR will I get upgraded? (I doubt I could get downgraded as there isn’t another place worse at this point.) I was thinking of putting a sharpie note on the inside of both my arms like they do before surgery with “slow drip equals 45 minutes per drug”, but it may be a bit too much. I don’t even have an outfit ready as the weather has been so strange from hot to cold to almost rain. I was enjoying my drug free moments so much the past few days visiting San Diego that I forgot how it felt. It was so great to be so removed from the routine of my treatment that the drugged feeling threw me for a loop as if I never had this feeling.

After enjoying the best trip to San Diego ever, I am pouting just a little bit. Back to my treatment job of phoning, following up and down, sending emails, sending my lab reports and scans with various doctors, and the fun of the bills. I do enjoy the phone calls from the insurance who check on me every 3 weeks to see if I am ready to jump or be locked up in a loony bin. I give the usual answer that all is working great and I am feeling great. I have never felt better (enjoying toxins in my bloodstream every 3 weeks is a pleasurable activity).  One wrong answer escalates me to DEFCON 1 and the calls start flowing from the “VIP services” which really means Volatile In(toxicated) Patient. I don’t have time for that, so I carefully choose my words: fine, great, excellent, healthy, minimum side effects, well-rested, calm, and calm and relaxed.  I am also working on the tumor profiling analysis which my doctor responded via email from Europe saying that this is a great thing to do before the samples are not viable. Now, I should drink to the treasure hunt of finding my samples. I will have to call on Friday hoping that I am not so “intoxicated”.

I will NOT be thinking of the non Passover items that Alex is hoping to clear out this weekend (remember I need my carbs and matzo does not count) and just focus on tomorrow. Instead of sharpie, I think I will place a post it note on my sweater saying, “if found, please provide a slow drip and return to Jim Triestman”.  I will continue with my “un-slumping phase” before I go to bed.