Archive for December, 2011

Learn, learn, learn…

December 30, 2011

Instead of repeating that great quote by Einstein, I will remind myself of my new lessons learned from the past days in dealing with your health. I would specify it towards cancer treatment, but it really applies to every health issue. Besides my scan order issue, yesterday was the lesson learned about labs. My fault again for not asking the right questions as the office worker from the lab reminded me. Who knew that despite my early rising to race to the lab to get my tumor marker processed quickly, my efforts did not bring the results I really wanted. The lab closest to my house used to be owned by a different company that processed everything in Orange County. Not the case for this new company which bought or took over the old lab. All items are sent to San Diego for processing and oops my test cannot be ordered “stat”. I never thought to ask where they send the tests. Again, never assume anything and always ask and ask. Of course, I had to call the main customer service number to request for full disclosure of this information to all patients. They gave me a supervisor name and number, but it wasn’t a priority for me yesterday.

Of course, I will not forget to call the supervisor just like I haven’t forgot my volunteer request at the new improved chemo closet. Bottom line, I needed the data point for my tumor marker and nothing will be done until the team meets to discuss everything. This element of too many unknowns never works well for me as I like a little bit of formula. Based on my discussion with my doctor at home (his dog barking in the background and again reminded me of how lucky I am), he helped us conclude a formula based on the findings of my scan which are microscopic cancer in the abdomen and enlarged axillary lymph nodes. I am definitely happy for no gigantic tumor findings which would mean surgery. Strange to think that I am happy about microscopic, but it is what it is. My whole journey started with the lymph nodes before, so we had to connect the dots for the doctor. The formula follows a rule that if my tumor marker continues to double or rise, then a decision of chemo starting soon would happen. If the tumor marker doesn’t double or triple, then a week would not hurt to wait. They have given me a drug to try which slows the cancer growth, but does not kill the cancer. I take this drug at night since it seems to have a dizzy loopy sleepy element for me. It takes this drug 4 weeks to see some results. If I have the luxury of time, I will wait  the extra weeks. Also, there is the consideration of the vaccine which I could take as well even though I would be out of the original study. So many puzzle pieces to put together which makes things a bit less straight forward. What I do know is this (as reminded by some very smart women): I have many people around me who love and support me. This makes this crazy ride all more bearable, but I still have to say that I do think it “sucks”. Cancer impacts all those who love you and support you. So, while Alex called me “dumb” yesterday and had the angriest face I had ever seen, I reminded myself that anger is so much easier than fear for kids. He told me when I put him to bed, “what if you are not here to put me to bed and you don’t make it.” I tell him as I tell everyone that I am strong and will do everything and anything to stay fighting. I joked and told him I would even get a buttectomy if I have to…of course, this only made him laugh as he asked what a buttectomy was. Who knows, but I will do everything and I will stay positive! It doesn’t mean that I am not angry at times or frustrated, and I will not stay on the pity pot for long. Pity pots are not comfortable and not productive! I also will take things day by day. Hey, I do have excursions to plan on our summer Mediterranean cruise. So, if I ring in 2012, it will FIRST be with a nice glass of something, followed by a nice chemo cocktail to kill this cancer!

Glow little glow worm, glimmer

December 28, 2011

I should be glowing in the dark, but luckily it is bright and sunny. Wow, luckily I only went to Newport for my scan and lucky for me I had 2 for the price of one (nurse and technician) who actually questioned my order AND looked at what I had done last time. I helped things along by letting them know I wasn’t going anywhere until the order was confirmed and that I would do everything in one trip. I didn’t want to hear, “oops, we forgot to order this or they shouldn’t have done that scan or that ct”. I appreciated all the attention to ALL the details. I drank the magic “smoothie” which now has new and improved flavoring. Although I had to ask for a straw and I would have rather had it chilled. At that point, I wanted to get this over with and no need in being that high maintenance. I did mention that they should offer a punch card or some type of frequent scan program where you would get a hospital t-shirt, scrubs, water bottle, or your own personalized sludge monogram drink bottle. Lucky for me, we have all the doctor’s cell phone, so they confirmed everything via email and phone. Now, I just wait. I am supposed to drink and drink, flush this glowing action out and avoid hugging small children, pets, and people.

“Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.” — Albert Einstein

December 24, 2011

With all this craziness about my numbers, I forgot to describe my visit to UCLA.  I did not even get the nausea onset as we pulled into the driveway. While having some snacks, I saw a frequent flyer who had her full head of hair and was with her daughter. She told me that she just asked about me and was so happy to see me. Unfortunately, she is one of the patients that I “talked” to under the influence of many drugs and my happy texting day. So, I am still unsure of what I said to her. She looked great and nice and healthy!

The best news about UCLA is very exciting! Guess what? They are remodeling again! Lady Gaga pod rooms for everyone even just for visits! The nurses told me the good news and laughed about the designers not really being in touch with a cancer patient. I told them Lady Gaga is better than closet darkness anytime! Boy, did the nurses and staff miss me (or is it the cupcakes and special treats)! I saw one of my favorite nurses who told me that I was talked about that morning and they will find something better for me. She said, “you tried and now you will try something else”.  The overflow room was used for visits which is uglier than ugly while the other room is being remodeled. I saw more frequent flyers and some did look worse and others looked better. I was greeted like a long lost family member or best friend. Go team! You just cannot help feeling their pain and their own crazy ride. The grey faces, gaunt look, and thin frail bodies tell you all you need to know.

We had a tag team approach with Jim and his notes and my mom and her notes. I was just there for the ride. I didn’t even have to fake cry because tears just came. I have only cried 3 times in the chemo closet total! My doctor said, “I know, it sucks!”. This only made me laugh a little bit because if you can see him, he is not the type to use the word “sucks”.  He stayed with us about an hour and discussed the plan. He reminded us to take things day by day. Even the other doctor (I don’t know why, but he is like an angry bird character to me), gave a smile and an encouraging look of “let’s play this game again.” I have choices of chemo that I haven’t tried. One old, one new, plus some other ideas that UCLA is doing in trial phases. I definitely decided that I want to have chemo earlier in the week. Why ruin my weekend? I should get a fast pass or upgrade to any time I want my chemo. Three recurrences in two years, over 18 months of chemo, plus a trial, has to get you something! I also do have to mention even with only See’s candy in hand and not those beautiful cupcakes and treats, I was immediately upgraded to a private room. Although I think it was for their protection just in case I had an emotional outburst like the rest of the frequent flyers. My outburst wasn’t a burst, but a gentle flow of tears to remind me that I still think this sucks and to remind them that as strong as I am, I am feeling this third time is a charm close to my heart!  The tears are not so much for myself as for everyone else who has been with me every step of the way. I know it isn’t easy and I know now more than ever that everyone handles this ride differently with and without humor.

Of course, the jolt of reality hit again when attempting to book my scan. They have changed the requirements, so that I have to jump up and down, tie a cherry stem with my tongue, and sing the America’s Top 40 before I can book an appointment. Luckily, my rock star husband handled everything ! While I enjoyed the sunshine with my family, he sent emails, made calls, and got a giant migraine for me! Mission accomplished, scan will be on Wednesday at 7:15 after much begging.

Enjoy the day! Laugh a LOT! I feel the love that surrounds me from coast to coast! Hugs sent back to you!

Third time is a charm?

December 23, 2011

Okay, just to quickly get this off my chest…THIS SUCKS! Even my doctor said the same words to me yesterday. My tumor marker came back and now is 6 times the normal amount since I do like to set records. I am thankful to have my family here with me especially my mom and sister…nothing like a little girl power! I am scheduled for a PET scan next week, UCLA has a few trials that they will see if my old samples match any of these (new gene typing). Otherwise, back to the old drawing board of drawing my eyebrows, that is. Chemo will begin in January. I have 2 choices of drugs that are FDA approved that I haven’t tried yet. The rest, I have either tried before or are not “proven” to help. Considering in 2011, the FDA only approved 35 drugs in all (these are ALL drugs), I expect to go rogue if I have to….As always, I am going to stay strong and positive, but to see my Alex cry and ask me why this is happening, only makes me want to fight harder. Off to shower away my anger!

“The secret to making your holiday inspiring is actually quite simple. Be inspiring yourself. As with any change, you must be the change you want to see in others.” Deepak Chopra

December 19, 2011

Listen up all you crazing wrapping people: unless you thoroughly enjoying wrapping your gifts, stop it! Put the gift in a gift bag with some tissue OR better yet, use a reusable bag (it’s the gift that keeps giving). No one cares about the wrapping and I would rather have you use your time hanging with your kids, friends, or family. Again, if wrapping stresses you out, stop wrapping the gifts. If baking stresses you out, stop baking. Just do what you can WHILE enjoying it. This is what I ask of you. It is working for me and yes, it would have been nice to wrap the gifts or bake those great cookies I love eating, but it just isn’t important. I know it always goes back to this: don’t sweat the small stuff and take things day by day or minute by minute. Instead of killing yourself making your holiday dinners, order it or simplify it. Again, unless you LOVE doing it, don’t do it.

I am on this roller coaster of emotion and I have to remind myself what would I rather do today? Of course, I started my day with making my UCLA appointment for Thursday. Nothing says Christmas, like a few blood tests and a chemo closet visit?! I also am getting my mammogram tomorrow since I need to check all body parts. I had to argue with my doctor just a teeny bit verifying that I don’t need a 3D mammogram. I told her that I am putting my life in her hands and if she is comfortable with just doing a digital and an ultrasound, then I am fine. All she does is breasts as she says, so I guess I will just have to trust her (just a teeny bit). At least she is human and did remind me to not leave the office until I “yell” for her and the radiologists to look at my mammogram.

Until then, I plan on doing a lot of laughing (so far it is working) and a lot of “playing”. I am not going to let the cloudiness ruin my sunshine day!

To be or not to be, that is the Cancer….

December 17, 2011

My drive to Scripps was much more delightful than driving to UCLA with a beautiful view of the ocean. My fastpass almost worked even with a few boxes of See’s candy, I had to wait longer than I wanted. I had to sit without wifi longer than I wanted. I also was wondering if they forgot to send me the memo about pajama day. Looking around, it was standing room only with many wearing pajamas and slippers! I thought my elastic waist pants were goin’ casual, but who knew. The package finally arrived, so the process could start. When the nurse who took my blood took the needle out without gloves on and my blood dripped on her hand, she asked me if I had any contagious diseases. I joked and said all was fine with me except a giant pustule on my buttocks or was it my leg? Seriously, what up with the no gloves? Of course, she was wearing a mask since she said she was feeling like she was GETTING SICK??? Are you kidding me? Then, there was this check the checklist routine. “Where is the paper card, there is the paper card. Where is the log, there is the log. Where is the other log, there is the other log. What is the temperature of the vaccines, here is the temperature of the vaccines.” “Oops, I flicked dry ice on myself”, said the assistant of the assistant nurse.  Jim had to look down and I couldn’t even look at him except to comment like I was doing some kind of sightseeing, “there it is, there it is, over there.” This whole routine continued until the thawing of the vaccines. Uh oh, then while the nurse has one of my precious vaccines in the hand, I have a flash to an episode of Dexter. I was thinking to myself while the nurse was juggling my vaccine and reaching for the sharps container, “oops, the nurse injects my vaccine into the other nurse.”. It was all a bit frightening to watch. When the observation phase was over, we got in the car and went home.

I felt okay except for some pain like a big workout at the gym. I decided to do a few important things like gather the books from school we wanted to send out to make some soldiers Christmas wishes come true. Around lunch time, I was down for the count. More aches, more pain, so I decided to gather all the holiday gifts that were to be delivered for school from Alex yesterday. Alex asked his teacher if it was okay to enter the classroom after school and he loved pushing the cart around delivering everything. I came home to the bed and never left it. Last night, the pain was worse and today, much of the same. It is hard to explain. Almost like flu, but not a flu…almost like all your muscles ache, but not quite.

I wanted the results of my blood tests since my last week’s cut on my hand was still not healing and bleeding off and on. I tried to get them to give me my results. Usually, it comes as a quick email. The hours went by and I asked Jim to call. I convinced myself that they were having a holiday party or were too busy, but somehow I thought something was up. The doctor called. And so it is…my tumor marker is quadruple my normal number. She told me it could be the vaccine or it could be the cancer. I hear my other doctor’s voice telling me that I just have to get past December as this would be the month of recurrence based on my history. The nurse called and said 50/50.  I am in shock, disbelief, and angry. Of course, this was at the same time when Alex walked into my bedroom to tell me he felt sick. Then, I realized he was supposed to go to the Temple to do his selling of his cards he made to support his favorite charities, Sea Shepherd and Pediatric Cancer Research Foundation. He  is devastated.  I am devastated. I called the Rabbi and started to explain why we all will not be going to the Temple and I started to cry. I remind myself that I will do whatever it is…it is what it is. One day at a time.

 

UCLA more about the education than football!

December 5, 2011

Last week, I went to UCLA for my once every 3 month check up-scan-test-o-rama. I like to make sure I go from San Diego to Los Angeles every so often. I really miss the traffic?! It is always an adventure or I guess I like to look at things this way. My doctor was missing (seriously missing) when I arrived. I think the nurses were almost a bit frightened as they checked every nook and inch of the office and hospital. Doors open and closed with the strange uncertain look of disbelief along with fake smiles greeted every patient. I wasn’t concerned because in this building there is great connectivity (not sure why except for to accommodate the pregnant women who tap their feet nervously and need diversions). After about 30 minutes of panic, they decide to start “the lesson”. If you watch The Big C with Laura Linney, you can picture the scene. I am in a very teeny room (another closet) where 4 interns plus a doctor come to be entertained (I mean, come to learn). The doctor has a suspicious smile, but reassures me as if I can worry about this visit any more than getting chemo?! After introductions all around, I felt like I should have been handed a glass of wine to clink the glass. She asks the interns where my uterus is… a definite pregnant pause. Then, girl with concerned eyes and nervous laugh says, “there it is”. Oh, I was thinking or laughing to myself that they finally found it and put it back?! The doctor answers, “no, that is her bowel”. Another intern who seems like he knows it all, quickly answers, “there it is.” The doctor smirks and looks at me like I know what I am looking at (I definitely know there isn’t a uterus inside my body). Doctor responds, “nope, patient doesn’t have one.” Glad, I can provide such entertainment. I continue to play along with the “find waldo body parts” and keep hearing, “no, that is her bladder or no, that is her bowel again”. After this game, I am told that everything looks great. Note,that I did agree to have this audience of interns. Since my doctor was missing, I thought it would help pass the time.  Finally, my doctor arrives and looks more tired than usual. Cancer is a tough business. He gives me a big hug and I need to stand with the drape over my nakedness to give a proper hug. He has seen me inside and out, but I still find this a strange act of coordination holding the paper drape in one hand and hugging him with my other hand. He proceeds to question me excitedly about me actually getting the vaccine. He really cannot believe it since most of the patients don’t get it. I keep telling him I got it!  He keeps shaking his head, but then quickly gets back to reality. He questions me on my lymph nodes and does my entire exam again. Better the main doctor checks the check of the interns and other doctor. He tells me again about the high rate of recurrence and that I must be vigilant about monthly tests and visits, blah, blah, blah. I know the drill and I know he wants me to confirm that I hear him and “obey”. I really do, but I really don’t like to hear the reality. So, I hear him tell me that we will need to get past December based on my history that is recurrence time. Fine, fine, fine, I tell him quite angrily that I don’t even remember anything about last year November or December due to all the chemo. I also remind him that the vaccine could work for me and stop turning on my cancer switch. He agreed, but I had to promise to do some more tests in December because there is nothing like a holiday scan to bring on the holiday spirit! At least, I know that no one put my uterus back!

I have one more week until the vaccine which brought me one week of sleeping beauty time. I have no issue with the sleeping since it involves no nausea, but just some aches and pains. Once you have major surgery and 18 months of chemo, aches and pains are all relative.

I am still really trying to remember what happened last November and December and accepting that it may be like childbirth and I will not remember. So, advance warning to everyone as far as my holiday wishes or comments. I may sound like I am repeating myself from last year, but I have no memory of it. Since I last wrote anything, I have been experiencing a bit of frustration from my missing brain cells killed by the chemo that are not returning. I tell myself every day that I do what I can do and that is good enough. Unfortunately, there are still the emotional vampires lurking around every corner. I have dodged a few of them and felt great (almost like a game of hide and go seek).  I still laugh at their crisis moment which can be not having enough “me” time. All I want every day is some “we”, “us” time…and continue to celebrate even the small things! So when all of you are hurrying about trying to wrap, send, cook, bake, take a moment to be with a friend, family member, neighbor and enjoy the moment, the laugh, and know how lucky you are to celebrate the moment!