Archive for August, 2011

“Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom.” Marcel Proust

August 30, 2011

I was convinced that my blood would be fine and my vampire days were over. I must be an expert on how to camouflage the cancer. As I have heard many times, “you would never know you had cancer.”  (even the new doctor today told me that I looked “incredible”…based on the pale sad faces in his waiting room, I agreed) The wonders of make-up, a cute outfit, a cute wig that looks like a real hair style, and some very important accessories are enough to hide how you really feel no matter what the issue is. I am an expert. I should get an official badge or pin to wear. I hate to think it is as the art of deception, but it works on making me believe I am not really sick. My only reminders are large gusts of wind, very dangerous for a wig wearer.  I really thought with a 1/4 dose of chemo, that I would not need platelets. Even the nurses told me I would be fine. They sent the charge nurse who was holding my report, ” sorry honey, we got to find you a room”. So, while I expected to be doing my shopping at Target, I didn’t prepare for this. I had to ask the usual questions as if it makes a difference about where the blood came from…Newport beach again. Then, I had to go back on Saturday which was not good timing since we had a wedding to go to. On Saturday, I was told that I am okay to be around crowds (good to know as if I would have listened to them), but I am very anemic. Oh, good to know that even after a good application of make-up, my face still appeared to have a pale look. I had thought I forgot to put any make-up on!  Of course, I had to go back to Hoag today just because my veins did not look convincing enough that I was some type of drug addict. Geez, I hope this goes away before Alex starts school. I can just hear the rumors now, “she always did seem a bit strange…did you see her arms? Poor Alex, her mom is a druggie”.

I did meet with a new oncologist in Newport who is very nice and did inform me instead of the ole’ chronic cancer condition that my cancer will come back. It is just a matter of time and a matter of figuring out what drug will work. He seemed to think that the Scripps idea sounded good for now. He did remind me that there is no magic answer. I did know that, but would rather not be reminded that the cancer will keep coming back. I just figured it would be good to have a local oncologist just in case especially since I was a frequent “flyer” of Hoag Hospital.

Well, I did get the official word from UCLA via email that my chemo needs to be stopped. My body has had enough. (My mind has also had enough) So, I will start the screening process for Scripps next week. I always thought I needed an upgrade with an ocean view. If we time things right, we can have a nice ocean view drive with a possibility of a weekend in La Jolla. Things are beginning to sound a bit better. I feel fortunate to have such a big team of doctors with incredible minds. I do have a deep fondness for UCLA. Despite that ongoing joke that I say about getting attention requires blood coming out of your eyes, I do feel that I am not just a number and they do care. There is a balance and support that you need from your doctors who tell you the truth in the most gentle way. I know in the back, back of my mind the truth, but I don’t need to have the reality told to me over and over. I prefer to wear my wig, my make-up, accessories and make the most of my every minute with a lot of laughter. Also, I do take naps when I need them!

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“Fear only has as much power as we give it space.” — Josh Ritter

August 24, 2011

My inner voice was telling me, no more chemo. I was really trying to be in a good frame of mind when I went for my chemo. Carrying the latest batch of sunshine cupcakes with hand painted ladybugs, I could not help to smile. I could not close my eyes to the faces that greeted me- gray, gaunt, clothes hanging onto the frames of once strong bodies, efforts to smile seemed like lifting a 30 lb weight, women asking what is next…I tried to ignore it all, but everyone has a breaking point. I just did not know that mine was coming. Nurses who were focused and hurried, stopped to take photos of the cupcakes. Smiles from the nurses seemed to turn on the lights in the matrix. After numerous mistakes due to new computer system and doctors needing more training on the system, I finally started my chemo which was down to 1/4 of the original dose. I don’t know why but I started getting a migraine. I barely started the chemo and my nurse asked me if I was ok. I said that I was okay, but tears started streaming down my face. My doctor came over and held my hand. Earlier, we had talked about the Scripps trial and coincidently my nurse was responsible for trials at UCLA before she had kids. My doctor asked if I wanted to stop, but I just asked for ice. I had enough…enough of the chemo, enough of the faces, enough of the smells. I finished my chemo, but the waterfall of tears shocked not only my doctors and nurses, but Jim. I know he felt helpless and I just couldn’t talk to him because he knows me so well that I would continue my tear festival if we talked. My nurse said quietly, ” look around, you would never know you have cancer. You can do this.”

Of course, I went home to pass out and gathered my strength for Scripps the next day. The good thing about Scripps is that even if I do not get the vaccine for the trial, I don’t get a placebo and I can continue cancer treatment as long as it isn’t chemo. I am fine with this as it forces us to think outside the box of hitting the cancer with a hammer as well as everything else inside my body. I began the screening with as much as I could do having just had chemo. I will continue the screening in 3 weeks or is it 2? Once that is done, I will know in days if I get the vaccine or not. The vaccine is made with my own cells. This is the latest type of treatment for cancer. You may have read something about melanoma and vaccines. Some vaccines genetically engineer your cells to go crazy, but this does not do that. There are no side effects, but I am sure if I get it I will have strange side effects. Anything has got to be better than the chemo. This whole process is very strange and surprising. I always wonder what the “other people do”. I guess unless you have your own team, it is difficult to gather the strength and do all this research. I am lucky since my husband is a rock star and the rock star of research. Since I am a “skimmer”, I doubt I would even research correctly with a clear head.

Speaking of head (as I usually do), my hair is still falling out for something new and different. Since the dosage was reduced, there is less of a rain shower of hair. I fooled the Scripps team as they commented that they were “surprised that I didn’t lose my hair”. HA! I just love telling people, it is a FAKE! I am glad that I didn’t lose my eyebrows or eyelashes as I did not have the patience for this summer art class of draw on eyebrows. If I had the option, I am sure my eyebrows would have expressed confusion and anger (one of each).

I do have to express my frustration for one more doctor telling me that cancer is a chronic illness. Come on…couldn’t they come up with something better like cancer is an illness that we don’t have a cure for? I am not sure if that statement is supposed to make me feel better, but right now it just causes me more frustration. If it is chronic, then why am I coming up with the plan (or rather why is my husband finding trials which are available for public viewing instead of my team)? Again, it is the ole’ case of you really look too good to have cancer. Good to know, but since I appear outwardly differently than my broken internal body issues, you would think that I am not the first to try this trick….It would be nice if my team of teams would have a menu of choices for me. It would be even better if this came with airfare, hotel, room service, pool side butler service, or turn down. Since we do not play doctors in real life, this makes it all a bit frightening. On the other hand, the Scripps team informed me of ocean and golf course view rooms. This sounds like an upgrade for sure. No matter what happens, I know I will get to postpone my chemo for one week. This week I am back to Hoag for blood tests since my team is convinced my blood will crash with even 1/4 of the dose. I am thinking completely opposite. I do not have time for a transfusion. My days of darkness are over. Sunlight or nothing! With weeks left before school starts, I did dare to ask Alex how he thought the summer was going. He told me that it was the best ever. Glad to know something is working out right! So, I will drink my doctor prescribed laxative to more sunshine and no darkness.  Hope you will do the same, but with red wine, mojito, margarita, mai tai, or chardonnay!

Am I a vampire?

August 16, 2011

I have just seen the daylight after spending 2 days in bed in a sleeping beauty state. Now, I am convinced that I cannot continue this chemo or my body has had enough of the one drug that I take just because….Before the chemo day, I had a lot of fun with lunch with my mom and Alex. We even had a short visit to the Sawdust Festival. I had an encounter with an artist who makes hand painted silk scarves. She wanted to give me a gift and the scarf was just perfect. It completed my cute outfit for chemo. She told me the warmth of the colors were full of life and energy. I will take the energy! Unfortunately, at the chemo matrix there was a patient who did exactly what you shouldn’t do at chemo. Of course, I was thinking of another book title, “The top 10 things you should not do or say at chemo.” Besides this patient being the number one whiner and complainer, she did not stop with the negative comments. Now, I may think of these comments, but I definitely do not say them. She violated every rule by complaining about the doctors, head nurse, nurses, and office staff. She would definitely be the last one to pick on a cancer patient team for dodge ball. I was on the verge of yelling, but mom just tried to talk a little louder to drown out her whining. It almost worked. Not such a special situation. Doctors decided to reduce my chemo and we may stop it after this time or next. Based on my recent sleeping issues with a lot of pain, I am thinking that it sounds like a good idea. In the meantime, I am trying to get into this trial which sounds like a vacation compared to the past few days. The good thing is that I have options and I can always take one of the chemo drugs that have been around for 30 years. Not sure what will come of this and it is all about timing. I am not sure what type of candidate I will be with my horrible blood numbers. So, I will stay tuned to see if I am going to have chemo on Thursday or not. In the meantime, I will avoid the vampireness of the situation and stay awake in the daylight and avoid all blood transfusions.

“It’s not denial. I’m just selective about the reality I accept.” Bill Watterson

August 10, 2011

When I think about next year school term, I remember that my chemo will only be until October.  I am determined to NOT continue the chemo as there are so many trials, drugs, and treatments that I can try next instead of the same ole’ formula. The reality is that this is a life changing disease. The doctors explain to me that I will be in treatment or in preventative treatment for years and years. I would like the verdict of a complete recovery. I want answers and I want a plan except no doctor seems to have THE PLAN. So, it is during this week that Jim, my husband the rock star, starts his endless research again. Will it be door number 1, number 2, number 3? With my visit to UCLA on Monday, the doctor seems to agree that planning is a great idea, so back to the tumor board my “case” goes.  In the meantime, Jim has made some of his own discoveries which all sound like great ideas to the doctors. Time to get the ball rolling before these months fly by and there is no plan. It seems that with a trifecta there will be at least 5 years treatment followed by what else…another scan, my next blood test…I realize that it all sounds so daunting! Somehow I am able to sleep easily (it could be the lack of oxygen in my blood, but I don’t care). I am able to face each day with a smile because the cancer job and the reality is in the back of my mind. I cannot let all the details consume me. I do think about the next steps, but not the whole situation. It doesn’t help me or my mental state. This disease has affected everyone who knows me, but I am insistent on not letting the cancer define me. I am much more than cancer. I definitely choose to live my life a bit differently now.  It doesn’t help me if I worry about every aspect including all the what if’s. Alex asked me today, “what if you don’t get rid of the cancer?” I told him that is not an option for me because I have him and so many people who love and care about me-they all give me the strength I need to fight. Seriously, it is NOT an option.

With the months of this new drug, my reality is that 3 weeks of the month, I am either in bed, getting treatment,  getting blood, or getting tested for my blood. So, I end up with one week when I can do anything or everything. I miss my friends and I miss what I used to do, but again cancer has changed me and now this is what I am focused on…my week of freedom. Of course, the long term side effects have tried to stop me, but I take advantage of every hour and moment that I can do things.

I keep smiling when I open my front door to see a beautiful friend, read a great email or card, see a funny text or just watch Alex dance!

I am days away from another chemo without a cute outfit planned. It is in the back of my mind, but until then lunch in Laguna and picking my Mom from the airport. Today, I sat in my sweatshirt at the beach (yes, it was 69 degrees!) this morning until around noon. Got to get in all my fun before I have to sit in the chemo matrix.

The P.O.Ps

August 2, 2011

I can say that the novelty of Hoag has definitely worn off. Visiting it on Saturday makes no difference than a visit on a Wednesday. While waiting for my nurse, I overheard the nurse I really liked saying she was moving to Colorado. Figures. So, besides my body having strange bruises all over, what was missing was the bloody nose for no reason. I was not in the mood to stay there all day. I decided in advance that if my numbers stayed the same or went up even by one number, I was out of there. You can now say that this cancer job is missing any type of perks. What ever happened to chemo swag? After my blood was taken by a nurse who felt that I needed to have a port, and I wasn’t in the mood to argue with her. I did try to point her in the right direction of the best vein to use, but she ignored my recommendations. I know she felt that I was just a patient and not a nurse, so what did I know. Well, I do know from the lovely “track” marks she left on my arm that I should be wearing long sleeves until this bruising goes away. I was watching the Newport chemo patients who are equally demanding, entitled, and acting like their situation should require not one violin, but at least a quartet. I guess as usual, my face told exactly what I was thinking. I thought no one had noticed until a distinguished looking gentleman came over and said one word, “P.O.Ps”. I asked him what was a POP and he explained, “people of privilege”.  Good to be “in the know” of the lingo. Never heard that one. My results came back with one tenth of a point higher. I was out of there even though the nurse had to sit beside me and explain all the risks of me leaving. I told her I would call my doctor at UCLA who responded that we could check things next week. He could sense my annoyance with this process and informed me that we would lower the dose next time for sure.

In the meantime, there is much fun to be had…research on vaccines, pills, and other trials which must start immediately after I finish this chemo, so the race is on.  I would rather take a walk on the beach with Jim, so that is what we will do tomorrow while Alex is at camp. Anything to take a break from the job. I have become increasingly frustrated which I feel terrible that Alex and Jim have received my crazy reactions on the simplest of things. I know this will pass. Until then, my next book title will be, “how to kill the cancer without killing the patient”. I never read that book that came out on the history of cancer, but I do remember some of the main ideas as to why are we treating cancer with some of the same drugs that were out ages ago. Crazy. I am hoping that the California Cancer Research Act passes in 2012…there has to be some better ideas. I cannot be the only cancer mystery to solve. Just too many unknowns. It is like a recipe that you follow, but something isn’t quite right, so you add more water, salt, sugar, chicken broth and it just still doesn’t make sense. As I continue my 18 months of chemo, I am still laughing a lot especially as I open a door to a new challenge or more unanswered questions. I choose to not focus on what I don’t know or cannot do anything about and do what I can every day. Even if today is a nap and a little whining, then that is what it is. There are so many of you who bring me sunshine that I cannot help but to keep smiling. Thanks for the sunshine!