Archive for January, 2012

“The universe is always speaking to us. … Sending us little messages, causing coincidences and serendipity, reminding us to stop, to look around, to believe in something else, something more.” Nancy Thayer

January 27, 2012

I am think the universe was definitely sending a message to the driver of the car that hit us! Who puts their 6 year old in the front seat while driving in stop and go traffic on the 405??? Not sure of the message to myself or Jim as I am still shaking my head (only left and right! up and down is too painful!) in disbelief!

My 2 1/2 days of freedom went by like a flash of light. Of course, they were filled with my usual cancer job of talking to insurance and nurses. I am happy to report that my short term memory loss is a “popular” side effect of my chemo. Now, I know my post-it obsession is a solution to this common problem. Unfortunately, this has caused me much frustration with Alex saying, “it is okay mom, just sit down and listen to your favorite music.” He puts on some of my favorites and dances around to “impress” me with his latest dance moves. I have the fear that this chemo is not working fast enough as I confessed to Jim on Wednesday that I was not feeling as good as I should feel or did not feel as I did before with all the other chemo treatment. There are no answers. I push the fear away, but it keeps resurfacing.

So, all you Jay Leno fans, you will be hearing about my 911 call with a dozen curse words screaming that I needed a police escort to chemo because this idiot with her child in the front seat slammed into our car. I was screaming like a crazy person. When I saw the hood of her BMW folded like an origami triangle, I knew this idiot was going fast and our dear new Fordy Fusion Hybrid saved us! The tow truck driver tried to calm me down. Jim knew what was best and gave me the task of typing her insurance info into my phone. Of course, we managed to take some great photos of her child sitting in the front seat, her car, her license plate, but too bad we didn’t take a photo of the driver.  I called the chemo closet and they sounded more nervous for me when I repeated what had happened. They asked if I was bleeding, but I wasn’t. My body felt strange, but later was told by the officer that was whiplash. The motorcycle officer pulled us over to the right shoulder. The idiot came out of her car and started telling the officer it was impossible that I was injured because it was because of “her cancer”. Well, that is one thing I know for sure is that chemo DOES NOT cause whiplash! It was my one part of my body that has been injury free and pain free for 22 months of chemo! The officer (like an episode of Cops and I started hearing the theme song, “bad boys, bad boys…”) told her to step away, go to her car, or she was going to cause more problems for herself. She kept trying, but he warned her again. Jim told me later that somehow the idiot’s daughter was now in the back seat. Jim also told me when the officer asked her, she did tell the truth. I was concerned about all my treats! Did the beautiful apple cupcakes become apple sauce? The officer asked me if I was going to the doctor to get checked and I confirmed that I would. Since we were late, Jim dropped me off and I walked to the office.

We were greeted and swarmed by the office staff and nurses asking if we needed an attorney or help. They managed to take the apple cupcakes and the office came to a standstill while they took photos of them with their phones while phones were ringing and patients waiting. Then, they did their own show and tell to the patients. The place went from silence to chatter and laughter. It was as if everyone was shrugging their shoulders and then, all of a sudden big exhales! I was told by all the nurses that my doctor was coming and I would need to see an ortho or go to the hospital after chemo.

My chemo went fine with one of my requested nurses. My blood work came back and was low, but not low enough to not do chemo. Go blood! They took blood for the next tumor marker. The team started calling an orthopedic doctor who would see me today at UCLA. Yesterday was old people chemo day.  Many arrived with walkers and canes. I brought the average age down to about 89!? My volunteer (notice I say MY) was back and I told him about my punch card idea which he thought was a great idea. He said he would talk to his boss. Then, while Jim was talking to the insurance, the chaplain came! Are you kidding me? She asked me to tell her how I was really feeling. I was thinking of a few not so special words to tell her, but decided I would delegate another one of my ideas for the chemo closet. I told her about the cute t-shirts Scripps and other cancer centers have with cute sayings. The staff should wear this type of shirt with a cute quote about hope or dreams or whatever! She took a lot of notes and said she would let me know. Glad, Jim was gone, but she ended with, “see you next week”. Huh? She better not think of talking to me next week unless her task is completed. Yes, I realize it was a bit disrespectful (something I insist Alex to never be), but it was her tone of despair, pity, and sadness like she was the one with cancer.I talked to a frequent flyer and her husband. They remind me a lot of Jim and myself. They explained what was happening which Jim and I now got the scoop as to why they were testing my tumor. She is on a pill form of a new drug in a trial. This drug is why they were testing to see if my tumor had this broken gene. One drug at a time for me. I started to leave, but what else could happen? The lab lost my blood, so I needed to have more taken. Are you kidding me? Jim and I decided to go to Hoag since the UCLA orthopedic doctors seemed impossible to get an appointment. As we were almost getting on the freeway, they called and back we went to UCLA. The doctor said “it is what it is” typical whiplash. He gave me an order for physical therapy and some drugs. Oh, just what I need more drugs, plus instructions for ice until Saturday and no working out. Excellent, I have to cancel my kickboxing class for the weekend. HA! Yes, kickboxing in bed! This UCLA orthopedic surgeon was so great and kind. I told him thanks for the xrays as I would be now glowing in the dark! I was still trying to figure out which good day would I get physical therapy. Jim drove us in our broken car home and I passed out.

Last night, doctor called with my tumor marker which has gone down a few more points. I told them all I knew it wasn’t going down fast based on how I felt. Who am I to know my cancer cells? Jim and I realized that this would mean a summer of chemo or maybe not? This cancer job has made me think about friends and family. It has brought all of us closer especially true friends. I have gained new friends and lost friends. I know it is too much for some people.  Others drain every bit of sunshine from me. (THE E.V.s) How I choose to handle my days confuses some and others completely understand me. Either way, I know it is not easy for you or for me. It still sucks and it sucks that the idiot hit our car, but maybe just maybe she may think for a moment that she should be sorry if not about the accident, but for the fact that she could have harmed her own child. As my fog sets in, I am overwhelmed by emotion. I do feel so very loved by so many wonderful people. You all bring me sunshine even when my days are cloudy and full of fog.

Crosby Stills Nash and Young, Love the One Your With:

And you don’t remember who your talking to
Your concentration slips away
Because your baby, she is so so far away…

And if you cant be with the one you love
Love the one your with
Don’t be angry
Don’t be sad…

“I feel like chemotherapy is all about forward momentum. You just have to keep taking the next step. Different obstacles will try to block your path but you just have to keep moving forward. If you fall off the beam, you GET BACK UP. Then you just keep going.” Shannon Miller, gold Olympic medalist

January 22, 2012

Who knows if I used this quote before? If I did, it is still true. I gave into the meds and slept Thursday, Friday, and Saturday off and on. Unfortunately, I guess I did a little online shopping on Thursday. On Saturday, a package arrived with some cute shirts unfortunately there were duplicates. Guess I was “click happy”! Hoping this was the only online shopping I did! I just double checked my email to look for anything else just in case! According to Jim and Alex, I said the same things over and over to them and repeated the things I had to do out loud, “brush my teeth, get a pill…” to myself! Lovely! I also talked to my mom at length about who knows what. We all decided that all car keys should be kept away from me until Sunday! I had written post its all over the place of different items that I wanted to remember. Then, Sunday morning a surge of information happened. It was as if a switch turned on! This makes me more crazy like an information overload.  As long as I know the chemo is working, I will go with the flow and “keep swimming” like Dory. I have to say that it was nice to wake up to homemade soup  and some of my favorite treats to eat, so thanks to all who helped us. You all know how difficult it is for me to ask for help and accept people doing things for me. Obviously, in this cloudy state, I needed help! I gave into the fact that my multi-task days are over for the time especially after chemo on Thursday. I do get excited when I accomplish baby steps during this time. So, today is much better than last Sunday. I listened to all of you “nurses” and some friends who are real doctors and took the pills, so my body could heal and rest. Thankfully, it was minimal pain and no nausea!  I plan to exit the house today and get some nice ocean air. Hey, I saw the video of the orcas off Dana Point, so maybe they will be around or I will enjoy the sound of the waves. I will also enjoy talking without the fog to Alex and Jim and remembering every minute! As Alex says, “Go Patriots and Go 49ers”!

“There is a bit of insanity in dancing that does everybody a great deal of good. “ ~Edwin Denby

January 20, 2012

Wednesday, I felt like I was on a game show. Behind door number 1, surprise another baked good or surprise some bagels appearerd. Thanks to all of you who have taken the time during your busy week to help me and the amazing nurses at the chemo matrix. Our day began with “Dance Thursday”! This is a new tradition where Alex picks his music and we dance around in his room for 3 songs. I cannot help, but to smile and laugh just thinking of the image! Some of you know what an “excellent” dancer I am?! Even Alex commented, “Mom, your dancing is funny.”

Our drive up was full of laughter oddly enough. I had to call the specialty pharmacy for a drug which costs $5k. It was one of those forever automated voices and I really needed to speak to a person, so I decided to make some strange animal noises combined with a made up foreign language. Of course, this blew up the automated phone system, so I had to start the call again. On Weds, since UCLA had not billed for me chemo which is about $8k or more, we had not met our deductible. I did some negotiating with my local pharmacist at Walgreens who is so amazing and patient. We figured out what drugs I would need in the next days and the rest she would hold for me.

All my favorite nurses were there (come to think of it, I am only not fond of one or 2). I had not seen one since I started this 3rd round. She loves all the “junk” reality t.v., so she was so excited to see me. I was informed that it was going to be crazy like last time. One nurse joked that they were giving away toasters this time. They were thrilled to see the baked goods and even happier that I managed to only lose one pound! I am certainly working on it. Without the nausea, I can do some eating even though my body is messed up! Food is still not my friend, but I do what I can.

Then, the ride began the slow descent to emotional craziness; my blood counts almost too low, need a transfusion? Geez, come on platelets, onward red blood cells, and I cannot live in a bubble, white cells (Anyone listening). So, we started the waiting game for the doctor. Meanwhile, the place started to get crowded and next door I saw a young man in his 20s as ghostly white as my great grandma used to look. She would wear so much white powder that she looked like she was ready to perform as a clown on stage!  Only this guy was in pain and alone.

As soon as the thought crossed my mind, the manager came to see me alongside a young man wearing a UCLA tshirt. She introduced me to Alex who will be a volunteer on Thursday. She told him this is all because of “Joanie’s emails and efforts that we will now have volunteers.” Of course, I thanked her and had to mention that idea of a punch card idea. This card would be punched each visit and with so many visits we get a mug or tshirt. She asked Jim what does he feed me. Doesn’t she get that this is me? I told her I wasn’t kidding. I haven’t given up on that idea. I began to talk to the new volunteer after he received his 10 minute training. Funny that his name is Alex and even funnier that his current major is bio chem, but is unsure if he should be pre-med. Jim and I talked to him about the benefits of specialized fields in medicine other than oncology! He explained he was from San Diego which is our favorite quick vacation spot. I decided to give him the real facts as he asked about the “beeps” and how long patients stay. I gave him the basics plus the overall feeling, but did not warn him of the crazy patients. No need to have him quit! He explained he wanted to interact with patients. I was so thrilled that my efforts paid off. He started to help the young man next to me and I was happy to know that I had made a difference! Step one was done! He did comment about the strange design of the matrix pods and laughed at my Lady gaga interpretation.

I kept asking for my last week’s report, but somehow no one wanted to give it to me. I should have gotten the clue. I joked that I had made a bet with the doctor and I really wanted to win this bet. My nurse’s face was a giveaway. I joked and said that I lost that bet and glad the stakes were not high. She handed me the paper with the record breaking number. She told me I am her hero. I tell her she is mine as she proceeded to jump to the pod next door to the guy who was now in a lot of pain. Now, I realized that team UCLA must have all known about my record breaking tumor marker which from last week was now back to my pre-surgery number except this time I did not have anything that could be removed. Each nurse had visited me and checked my IV. I never needed this much checking. While we waited for the doctor I talked more with Alex, the volunteer who talked to me about the music that myAlex now enjoys. We talked about travels and his friend is a math major at Cornell, so I talked about what I did with my math major. I  also gave him a summary of Club Med ( g rated, no tambourine dances, no coconut tops, no topless stories). I also told him to go abroad and then  told him it depends on your major which I had to switch to math from Chemistry. This way I took advantage of the programs abroad lived outside London while I attended Univ of Reading and classes at Oxford. Of course, I did have to add that most math majors abroad are very odd and barely change their clothes in the winter or shower. He had to go help patients who really needed help. While I am forced to face my own thoughts, I needed my headphones and played all the words with friends games. The waiting game sucks. I told Jim that when my infusion ended that I didn’t need to talk to the doctors. Now, my nurses are panicked and started paging the doctor.I convinced them that I would be back next week or talk to him over the phone. Then, my cousin who looked fabulous walked into the room and diverted our minds for a few minutes!

Finally, my doctor had been found and we talked in a secluded room. I felt that either he really had some bad news to tell or he thought I was going to have a meltdown. He looked worse than I felt as I was in my anger phase. His eyes were sad and pained. He looked frustrated, but started with his standard speech which if I had been in a different frame of mind I would have screamed. Instead, Jim and I exchanged glances of “oh, please, spare us “the speech”.  He told us that he would call us last night to let us know if the tumor marker changed directions. He had given us a list of 3 drugs which Jim started speaking the same language while I sat with my half way smiling half way angry face. I told him that I never had this happened once I started chemo. He gave me the standard, “some people like houses on corners, some people don’t” or basically, the standard of “some people have this happen”. I did not care about PEOPLE. I cared about me! We changed the subject by telling him about the new volunteers. He finally smiled and said, “You are such a trooper.” He put out his hand and I just grabbed his hand while I hugged him tightly! He smiled again. We left the place for some oxygen. I started crying a little bit, but fell asleep in the car. I took all the pills they told me to take and fell asleep for hours. When I woke up, it was as if it was a dream. The phone rang and I heard my doctor’s voice who sounded like a giddy school girl yelled, “It is down, it is down, just a little bit, but this is it. It is working!” Yahoooooo!

Today, I am faced with the same old stuff, but now know that it is all worth it! I will take the pills and attempt to eat. I will sleep and dream of “dance Thursday”. Enjoy your weekend, my fog will return soon. Reminding you to make the most of your day and enjoy every moment.

 

“I can see clearly now, the rain is gone,” Johnny Nash

January 18, 2012

Wow, I really forgot how the chemo brain and fog is…it was as if I was on vacation drinking many shots of tequila every day and only remembering faint images of what happened. I am reminded by Alex that I wasn’t that fun to watch football with since I kept saying fumble or touch down which was “wrong”. Today, I drove for the first time in 6 days. I was wearing my other hair with a headband which really freaked Alex out. He kept asking me about 10 times ,if I was going to get out of the car. Just to make him laugh, I kept asking him if he was sure he didn’t need help with his trumpet. I kept telling him that I could be like Campus Catering and drive in the back of the school to give him door to door service. He looked at me as if I was going to actually do it! I reminded him that last summer I wore this hair with this head band and he responded, “it is a lot of forehead, mom.”. Yes, leave it to a 10 year old if you really want the truth. I compromised and dropped him up top and rolled down the window and screamed, “Campus Catering?”.

For all you people who are now saying, “it is cold”, I am telling you that this weather is not cold (try living in Buffalo or Rochester, New York and walking to school in a blizzard!). This crisp sunshine day is what I love. I was so happy to see the sunrise and be outside that I was like a little kid giggling the entire day. I was happy to see friends and friendly faces. I was so happy to be in the moment of the day. I had lunch with Jim and enjoyed every minute even though he was trying so hard not to look at his phone and ignored almost every text and email.

I am even happier that I have tomorrow too!

For those of you who don’t know the song…here are the rest of the words!

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

I think I can make it now, the pain is gone
All of the bad feelings have disappeared
Here is the rainbow I’ve been prayin?for
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

Look all around, there’s nothin?but blue skies
Look straight ahead, nothin?but blue skies

I can see clearly now, the rain is gone,
I can see all obstacles in my way
Gone are the dark clouds that had me blind
It’s gonna be a bright (bright), bright (bright)
Sun-Shiny day.

“An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.” Martin Luther King, Jr.

January 15, 2012

With treats in hand and a reservation for chemo party of one with plus one, I was confident that I would get a seat. Of course, I had to add my nurse request at the front, once I made a nice snack plate offering. Now, I know the look. It was a half way smile with eyes not directly fixed on mine. Their eyes looked at my chin which if I didn’t look this morning; I would have thought I had grown a beard overnight. Regardless, as Jim was asking me if knew who my nurse was, I was called by a friendly familiar voice. If I had a top pick of nurses, this nurse would have been in the top 2. She did get bumped to number one as soon as I remembered that she has the same vomit phobia as I have…ever since childhood. She is so sweet and speaks with a soft and warm voice always with a smile. She has 2 kids and her son is the same age as Alex. I had my pick of seats, so I chose my favorite, but asked her if it was okay since I don’t want her to be jogging between patients just because I wanted my favorite seat. She reviewed my order with me and smiled when we told her that order was incorrect. She told us not to worry even though we did. She took my blood to see if I could even get my chemo. I thought all levels should be okay, but what was up with my platelets….down they go in one week and I was missing some red cells…okay, now I was out of excuses. Last week, my excuse was the big blood draw Scripps took from me. Oh well, I looked at the print out provided by my last week nurse and you really have to be almost needing a blood transfusion for them to not give you chemo. I knew my doctors wouldn’t let this happen and had told me with this drug we could take a week off and it would not impact anything. I got my printout from last week of my tumor marker…no news there.
I guess I am still trying to do some record breaking.
I told my doctors that I believed my tumor went down.
They told me that would not happen until 3 cycles. I know they think I am crazy!

And their off, first negotiation was the steroids…I said no, they said yes, nurse was on my side, then race to the finish line….answer was no steroids since my husband the rock star convinced them that  if we changed too many things at once how would we know what was working! Then, to the anti-nausea meds, yes we knew that the average person does not need them with this chemo, but haven’t they learned that I am not average? Negotiation number 2: anti-nausea drugs…with pills in hand and some back and forth plus explanation on how the chemistry worked, I get the IV anti-nausea drugs. Thanks to my rock star
husband once again for being so brilliant to understand how these drugs all worked. Now next question, “to port or not to port”: after the team of nurses look at my arms and decided once again how great it is that my arms are so slender (glad my butt is not needed in this), no port was needed, but they would let me know. The IV was started and I saw the familiar faces, the young girl who has a 10 month little girl, the repeat woman who flies in weekly, and others who I lift my eyes to smile, but am not ready to hear their stories. I saw the story in their faces and bodies. Their frail bodies withered in pain as if smiling caused them to have more pain. I made small talk to the group about the patient that no one wanted to sit next to or “play with”. We all commented that “she meant well”, but her negativity was too much and her outbursts and anger was something this group did not relate to. I had the team of nurses’ comment about the cake pops, pumpkin bread, and last week’s fortune cupcakes.
They also all checked my IV and worked as a team to ensure that I won’t be nauseous. Of course, the acid reflux set in and I popped a pill. My top 2 nurses decided I needed an extra boost to avoid dehydration and helped with my nausea. They paged my doctor and he agreed. Okay, this added about 30 more minutes, but proved to be worth it. I looked around the matrix and it was full. Not an empty chair in sight. The nurses were literally running patient to patient. I asked the nurses and they commented that it had been this way since December. The office staff went from hair down to hair clipped up with who knew what…everyone looked frantic, but nurses were still smiling as they grabbed a snack or two while checking blood for each patient. My rock star husband asked for my next appointments as we had a bad feeling with Monday holiday and February holidays. I actually heard them say, “No more room, we cannot do it”. One nurse told me it is as if they were giving away wide screen plasma TVs! Are we still on this mathematical problem? You know once I get to a good place, I am not going to let this go! We walked out to the lobby to see standing room only! Not a seat empty, nowhere to even stand. We both decided to get the bathroom keys from the other office, but soon saw that room filled to capacity too! We left knowing that I must follow up on my schedule.

Not sure why, but I passed out in the car on the way home. I haven’t done that in a while. I passed out after seeing Alex’s smiling face and hearing him telling me
he had a great day. This was so much better than then the steroids. I woke up and was able to eat something only to go back to sleep. I woke up thinking
I was feeling fine and sent a text to my friend that I wanted to go for a walk. Jim looked at me and I know what he was thinking. I realized that I could barely go up and down the stairs. I could barely get out of the chair!
Okay, another text for some help to get a few things since Jim had to work.
I can imagine my friend smiling as everyone knows how I am. Thanks to team Joanie who ran around for me around the town. I was feeling so much pain, but happy not to be nauseous. I passed out once again. I knew Jim had been on the phone all day and left for some work crisis. I do hate the selfishness of cancer.
I was in my fog.

Unfortunately, I woke up at 4am and decided to try to make Alex’s wish come true to see a basketball game. He is now equally obsessed with football. I think it is genetic. As he continues to tell me random facts, I think of my father who knows everything about everything regarding sports. I found all sorts of great deals on Clipper tickets. I got caught up in the moment. Then, the reality of the situation happened. Jim and I had a conversation about what we both were thinking. It was emotional and cathartic, but just as painful as the pain I was physically feeling. I was angry. I hate all the reminders that my body gives me as the chemo fights the cancer. This is my life. This was yesterday. This is today and we do the best as we can. My husband the rock star knows too much, hears too much, and sees too much. He is my protector and my reminder to stay strong. We walked in Dana point and I felt the ocean air on my face. I took deep, deep, breaths and thoughts of sunshine filled my mind. We sat on the bench and talked about getting rid of the carpet to wood on the stairs and in the loft, cleaning and sealing the tile downstairs. So, it goes, life goes on. I woke up again at 4am and feel the fog lifting. I think of that John Denver song even though Alex thinks Country Road is a made up song. He informed us of this “fact” when he had his last trumpet lesson. In the words of John Denver:

Sunshine on my shoulders makes me happy
Sunshine in my eyes can make me cry
Sunshine on the water looks so lovely
Sunshine almost always makes me high
If I had a day that I could give you
I’d give to you the day just like today
If I had a song that I could sing for you
I’d sing a song to make you feel this way
Sunshine on my shoulders makes me happy
Sunshine in my eyes can make me cry
Sunshine on the water looks so lovely
Sunshine almost always makes me high
If I had a tale that I could tell you
I’d tell a tale sure to make you smile
If I had a wish that I could wish for you
I’d make a wish for sunshine for all the while
Please seize the moment and have a sunshine day!

 

“When shopping for doctors, remember that sickness is a big business, don’t get sucked in.” Kris Carr

January 11, 2012

I love the book, Crazy Sexy Cancer Tips. It is always fun to read especially when someone either says one of those dumb comments about knowing someone who just died from cancer after asking how you are doing. It is also fun after a e.v. (emotional vampire) encounter. I should feel bad for you because you couldn’t get your hair done or your cleaning lady did not show up? I am not feelin’ it.

This morning Jim and I were laughing about an initial doctor appointment we had in 4/2010 when seeking the best of the best surgeons. This doctor asked me if I wanted to see my son get married? This doctor was going to “save me”. We had another doctor visit recently and this doctor commented, “don’t you want to see your son graduate from college?”. Jim and I decided the best answer for this is, “nope, just high school would work for me.”….Come on, are you serious? Do people really fall for this? I know I did just a teeny bit. They had me in the palm of their hands. I was a bit teary eyed. It is definitely good to have a doctor with a big ego, but too big is not good. Too big of an ego and you as a patient get lost in the “saving” without a real story of having a real family and real emotions. I am lucky to have the best of the best. I only had one meltdown with my doctors in 20 months and it wasn’t really really directed at them. They are all there for me! None of this, just call the office attitude, they answer their cell phones and on weekends. They answer my emails Christmas Eve and other holidays too! They listen to me and answer all my questions. They hear my fears and know what motivates me. They never make stupid comments about “saving the day”. They are realistic with me and they let me know all the facts. Of course, I ignore a lot of what they tell me has worked for most or doesn’t work for most. I hear them when they tell me that good nutrition cannot cure my cancer, but certainly can support my body to get through the chemo. I also hear them when they remind me to listen to my body. I hear my body, but sometimes don’t like what it is telling me. This is when my friends remind me of what I should be doing like eating, sleeping, and resting. I cannot tell you again how much your hugs, emails, and words mean to me. They are like getting a free massage every day (only I cannot get a massage due to chemo)! I was so happy today to have an appetite. I cannot explain how difficult it is to force yourself to eat when you really don’t want to eat. Today, it was the first day since my December “crisis” started that I actually could eat and wanted to eat. Baby steps! This has got to be a good sign!

What is that smell? Is that a skunk?

January 10, 2012

Happy day today as my fog just magically disappeared at 3am! Sorry for Jim as I was feeling so great that I felt that I should get up and go, go, go. I didn’t go anywhere, but it is a strange feeling like childbirth that you quickly forget what actually happened during those 28 hours of pushing!  It is as if I am in a tunnel and every so often, I can hear what someone is saying. Unfortunately, Alex or Jim had repeated themselves about 4 times until the thought was registered and the question was answered.  I forgot about the phases of the chemo: high as a kite, nausea, foggy, and extreme fatigue. The extreme fatigue is also a funny one! When combined fatigue with the fog, you are certain to make a few frustrated and convince yourself that you had answered that question even though you did not say the answer aloud. The chemo itself is so toxic that you feel like you either have a bad hangover or took too many pills of some kind. Your taste is off and all your senses messed up.

The unforgotten toxicity seeped out my pores and out every orifice. At one point, I was convinced that my bedroom window was open and a skunk just walked by my room. Nope, that wasn’t a skunk! It was my lovely chemo perfume. I also was wondering about the chemo pill and chemo IV side effects. One can cause hair growth and the other causes hair loss. I expect to have no hair on my head with a lovely mustache and beard, plus possible tufts of hair out my ears just for fun.

I cannot even think about doing this all again, but I know I will. I am better doing hour by hour now. I am still at the verge of laughter, frustration, and fear-all at the same time.  I ignore statistics and other numbers as I remind myself that I am not a number. I also will not read anything on the internet unless it involves a funny Youtube video. I do all this to cope with the situation. I also make every attempt with my brief exposure at school for pick up and drop off to avoid any emotional vampires. They still lurk around the corners, so I don’t make much eye contact. So, if you are calling my name, I may not have heard you since I am “running” from the vampires. While at pick up or drop off, my focus is Alex and that is where it needs to be.  I don’t have words to answer many questions since I don’t have answers. There is no magic answer or magic pill. I know I am surrounded by a lot of love and feel all the love and support! Something magical is bound to happen soon!

“Always and never are two words you should always remember never to use.” Wendell Johnson

January 7, 2012

Three days later from my infusion, I am almost able to laugh at what happened. I still cannot believe what happened as I am a logical person with a mathematical mind. I would bet that there is a formula that some hospitals use to calculate the number of patients that can be seen. I bet that if I give the information to Alex, he may be able to come up with the answer. You have a number of patients, the length of their infusion, the number of chairs, and presto comes the answer. While my camping out idea seemed good at the time, it did not work as I expected.

We entered the waiting area with cupcakes and treats in hand. One of the staff had that horrified look of “what should I say?’ and the “please go away look”. She started with “we need approval for your infusion”. We knew this was not true since Jim had already called yesterday on this. We knew she was attempting to handle this with the words her supervisor told her to tell us. Then, she told me, “Joanie, I am so sorry, but we are full. There is no room. We cannot fit you in.”  I really could not believe what I was hearing. This was not a hair appointment or a dentist appointment. I needed my chemo. Chemo matrix sold out and standing room only? This was “one concert” that I thought I had a VIP pass? I was going to squat a protest and not move. Tears started flowing down my face. The staff proceeded to jump up and get me a box of tissues and told me that they would ask the supervisor. Who is this wizard of scheduling that has no math skills? There had to be a spot for emergencies. I let her know that I have the Chief’s cell phone and I would call him. The frustration was so overwhelming. I looked at the gaunt grey faces wearing masks (although one patient was coughing away and saying she was sick?!) and the frightened spouses. Were these patients told to come back another day and this was their day? I would not accept the words “no room or full”. My mind started to race for other ideas.

We were soon escorted to a private room. This was a good move as a sobbing patient was not what other cancer patients wanted to see. Poor Jim, his face had said it all. He was so stressed and worried that he kept looking up and down without really making eye contact. He attempted to reach out towards me, but I was beyond consoling. In my mind, I knew I could wait another day or two, but this was unacceptable. Alex was afraid and nervous. We had arranged pick up and schedules. Jim had been juggling conference calls and his work. My pain on my right side was not going away. My appetite was gone. I still could not wrap my head around the situation. You can tell a patient who needs chemo, “no”? My doctor walked into our room and he looked so frustrated and kept shaking his head. I had never seen him like this. He told us he tried everything and even called the area infusion clinics, but patients decided to take weeks off from chemo for the holiday. Is that my problem? He explained that they had room for 25 patients and today there were 40.  I continued my crying and said things that I cannot remember except I do remember a few of my special comments.  I told him that I wouldn’t die from cancer or chemo, but from dehydration and malnourishment  since I couldn’t eat or drink today. I told him to admit me to the hospital. Oh boy, then he started swearing and using the words “frickin” this and that. He started swearing on the lives of his family members that it would not matter a day or two if I waited. It did matter to me. It mattered because I am a patient with a family, a patient who has had a 3rd recurrence in 20 months, a patient who has cancer,and  a patient who will not wait another day. I asked him if I should call the Chief and he said, “yes”, and he would be right back.

In the meantime, my favorite nurse who helped me with my first chemo walked into the room. She had been on leave since she tore her shoulder from dealing with the “unbroken” chairs in the old chemo closet. We were so happy to see her. We explained the situation to her and we hugged. She is a small woman who doesn’t take any crap and will not put up with you being on the poor me train. She will yell at you if you are not eating and remind you of what is important. She is an incredible nurse and I had missed her during my last chemo.  She can find a vein in seconds without causing you even a pinch. She told us she will be right back. Within 5 minutes, she came back to tell me that she had a chair for me. In the meantime, Jim was passing out the cupcakes. So, did the cupcakes save my life? It may have been my nurse or ???

The infusion started with the steroids. I questioned the amount since I had not had that amount EVER. I apologized to my nurse and she said, “NEVER ever apologize for advocating for yourself!”. She reduced the steroids to half the amount. I questioned the anti nausea meds and Jim did too. In the back of my mind, I knew they were not going to be enough, but it was worth a try. The infusion wasn’t that long since I only had one drug instead of 2 or 3. Jim and I camped out for one hour to secure my “reservation” for chemo once a week. I knew I was a frequent flyer of the matrix, and did question the every week chemo. Oops, it was something that the doctor neglected to mention. While waiting to secure my seat, I was asked if I was here to check in for my chemo. I responded that unless there was a 2 for 1 special, that I already did my chemo. The others in the waiting area laughed and added if there was a 50% discount for repeat customers. I agreed that there should be some type of punch card like I suggested at Hoag for the scans. After so many punches, you should get a souvenir UCLA cup, pencil, tshirt or something!

I was right about the nausea. As soon as we arrived home, I started poppin the anti nausea pills. My nurse called me to see how I was doing and suggested some tips for eating and drinking. I was also high on the steroids. I could not sleep, but only for 2 hours. I think I played words with friends all night and watched t.v. I decided as the sun started to rise that I would walk Alex to school. It was the steroids taking over! I could definitely be an advertisement of “say no to drugs”. Walking down the hill, friends honked and looked at me with disbelief. I quickly sent a text to my friend to meet me at school to drive me back up the hill. What was I thinking? My brain was sending too many messages to me and I was spinning out of control.  Alex seemed okay, but kept looking back at me with a questioning face.

I cannot remember what I was thinking or doing. I decided that I would get my own smoothie. Of course, I get the smoothie and placed it in my cart. An older gentleman rammed into my cart at his full speed and my smoothie spilled all over the floor. Luckily for my steroids, I just quickly gave up and returned to my car having forgotten what items I was going to pick up at the store. Then, the steroid crash happened. My body could not move an inch and my mind was blank. Off to bed or so I thought? Alex walked into my room crying. Jim had been talking to him for a while. Alex asked if we were lying about what my doctors said. We attempted to reassure him, but his mind keeps racing. We reminded him again that negative thoughts zap your energy and my energy. We explained every detail of the matrix and he seemed much better.

It takes a village and I sure have a large village. Alex felt the love all day at school and had the best day ever!  Meanwhile, the nausea is almost gone and the fogginess began. I think that this morning the fog will be gone. I forgot what chemo was all about. As someone was saying, it was like childbirth. I focus on hour by hour, day by day. I cannot think that I will be doing this week after week for 6 months.  Looking forward to some sunshine this weekend! I remind you to hug your family, hug your pets, and hold onto the day!

“What you don’t have you don’t need it now. What you don’t know you can feel it somehow.” U2 Beautiful Day

January 4, 2012

While driving down the coast to San Diego, I hear Alex’s voice in my head saying, “no texting while driving, you will go to jail”. He never said anything about whale watching and driving, so I scanned the horizon for whale footprints. It is gray whale season, so you never know. I flipped the radio stations to find an upbeat song to re-focus my mind away from the image of my nieces, nephew, and Alex  hugging me in a giant group hug before they left. This image gets me tearie eyed and who wants to see me with smeared eye make up? I later find that the answer is my doctors at Scripps.

At Scripps, (despite their inefficiencies) their humane team approach is overwhelming. They wanted to ensure I have every chance of using my vaccines, if I want them. I say, why not? The more treatment I get, who knows what will work! I had a team working on every body part and checklist. We joked to see if I am flexible enough to get my blood drawn while being examined by the doctors. My legs would not stretch that wide. (I am not that coordinated.) They expedited me at every test. When I walked into the main hospital, the first response was that I would have to wait hours, but then they pulled up my order which may had said, “lunatic cancer patient” or “expedite or she will go crazy”.  I was quickly escorted by several hospital workers to my next tests which must be done for the crossover study. The laughable comment came from the doctors who said I am too peppy and upbeat which makes it difficult for them to know I am feeling bad or really as sick on the outside as I am on the inside. Good to know! Next time, I will make it easier for them by looking depressed and smile less?! Are you kidding me? It is great to know that I still don’t look as bad as I feel. Also, reminds me why many of the patients there are in their pajamas. I may need to wear my pajamas next time for a fast pass.

The day was long, but not as “painful” as it could have been. Unfortunately, I cannot say the same of my evening. Around 5:45, Jim gets a message that UCLA  may not be able to give me chemo until Friday. No way, you have got to be kidding is what I thought. I have a 3rd recurrence, arranged for child care, don’t want my entire weekend ruined from the side effects, and this is just plain inhumane! I guess I am not the priority of the moment. I know there is always someone worse, but I don’t want to be that person. I was upset and Jim was upset. My symptoms are increasing every day and to me every day counts. As my mom said, “who would ever think that a patient begging for chemo, cannot get it?”

So, I proceed to page the doctor over and over even leaving a very tearful message on his cellphone. I had to make myself the priority. Jim and I decided the camp out approach will be best. Do they really  want to look at my face all day? Of course, I put all my symptoms in an email too. Got to love liability,  right? Suddenly, a tearful conversation gets the doctor to say that he will make it happen. I would think I should be high priority to someone in accounting. With my sticker price of chemo for now 20 months, my year to date income for UCLA is over $200,000 not including surgery.  I cannot forget the business side and I am sure they know it too!

Best of all came the lemon cupcakes with hand rolled caramel fortunes which came from Elina and Alexis for a fast pass at UCLA. The fortunes are quotes from my blog. My mom thinks this will work magic today. I am sure if it isn’t my pathetic face looking really desperate, it will be the magic cupcakes! We’re off to camp out!

 

“You don’t choose your family. They are God’s gift to you, as you are to them.” ~Desmond Tutu

January 2, 2012

I cannot believe the 2 weeks are almost over. One day left! Our family packed so many fun activities into those weeks that it doesn’t seem possible. We always laugh at the ole joke of Americans seeing all of Europe in 10 days. This is my family while also planning the next meal while we haven’t finished a meal. There is nothing like having your family (sister, mom, dad, brother in law,nieces, nephew, aunts, uncles (great aunts and great uncles), cousins visiting you while you are facing an annoyance in your life called, cancer.  There were moments when I laughed so hard that I couldn’t catch my breath. Who knew that nerf guns could be used indoors for family “combat” while doing dishes or taking a break before dinner? Of course, we still have so many family jokes that keep us laughing until some of us (no names mentioned) would almost wet their pants!

On December 30th, the kids created a powerpoint presentation for the parents and grandparents to persuade us to let them have a “cool kids street fair” to support Pediatric Cancer. They did a fantastic job with music and a bit of dancing. We couldn’t say “no” to their wonderful presentation mentioning the “pros and cons” including words like “entrepreneur” and “merchandising”.  Their excitement was contagious as my niece organized the workers with all their “jobs”.  She made flyers to hand out at the park too! So, on December 31st, we went to our park with “games”, prizes (leftovers from Alex’s desk sale and drawers of stuff), and merchandise (leftover candy from the creation of the gingerbread train project, fudge, and anything else the kids wanted to pull from my garage). Our park always has a great number of kids and parents. They explained to the visitors what they were doing. Plus, a friend had her family visiting and they sold duct tape items at the front of the park. It was such a great moment of joy and pride to watch them do their magic! They took their jobs very seriously until about 2 hours when they decided to participate instead of work at the games. I must say that my 12 year old niece kept with the selling of merchandise until the 3rd hour was over and the crowds were few. You couldn’t help, but to laugh and smile. A gigantic thanks to all who attended and to some very generous friends, the kids raised 127.64 for PCRF. (Pediatric Cancer Research Foundation)

My family returned to Houston yesterday. We were all very sad and Alex is still missing his cousins very much. Of course, my plans continued with my team of doctors from UCLA and Scripps. One doctor responded, “Let’s go for it”.  Who knows what the “it” is, but I am going! It seems that with the vaccine trial, I would need to go to San Diego tomorrow and then Wednesday to Los Angeles for treatment. So much paper and testing has to be done. I don’t mind as I will do everything and anything, I have to do. My symptoms are increasing, but not too fast. I have a gentle nudge from my body telling me that I need to get going on this plan. I hear it and I hear the loving words of family and friends. I have to take things day by day.  Each email from a doctor changes a plan with every word. The unknown of the side effects lingers in my mind. I have such a drug sensitivity that I am armed with all the anti-everything drugs.  Jim warns me not to read the list of side effects of the chemo since it covers everything from hair on your teeth (not really) to itchy toes. So, I will stay off the internet for reading side effects, but I do plan. I plan to ask for more help. I will need help because every bit of my strength has to go to this fight.

Tomorrow, I may be doing a lot of waiting. If you play words with friends, my user name is joantri. I am happy to play a game!  Until then, I will go and watch the Rose Parade! Happy 2012-it has to be THE YEAR OF THE HEALTHY!