Archive for November, 2012

“Just when I determine that I have no time to waste and must relish the change of the seasons, the timetable of chemo-time nudges them aside.” Susan Gubar

November 26, 2012

Back to reality or as Jim says, “it is much easier to figure out where we were going to eat dinner in Maui then to figure out what plan b is.” We had such an amazing time in Maui. It started out a bit shaky since I was still feeling the effects of my chemo. I still (as usual) don’t know how I flew to Houston, but I just do what I do. We really enjoyed the perfect weather, tropical air, great meals, and being together as a family without the cancer crisis calling our names daily. Alex said it was if I was almost “normal”. I couldn’t agree more because there were times that I actually forgot that I had cancer. Some of the times were our walks around Maui (including Haleakala) or our snorkeling which I did forget for some moments about my cancer. Of course, what the folks at MD Anderson said to me would enter my dreams and I would awake with the reality. Luckily, I would soon forget it as the day went on.  I even played tennis which I haven’t done in ages. It really helped that it was almost cool at times and there were a lot of clouds during the day. I loved seeing my boys smiling and loved laughing.

Now, we are back to my chemo planning for Weds and the realization that I really do need a port.  When we looked at our December calendar, there weren’t enough days in the month to do what we needed to have done plus another chemo cycle. I will be back on the every 3 weeks schedule. I have to drug up starting tomorrow and I really don’t like how all those drugs make me feel. I did enjoy my drug free holiday.  We are not saying a lot about the plan which we don’t have. We are back to the unknown and I am certain that what MD Anderson may have said would be true for anyone else, but it is not my truth as they don’t know me. It is difficult to accept this life that I did not choose, but just happened. It is even more difficult to go face to face with my cancer. There was this Saturday Night Live episode a while back where a character was screaming, “Fix IT” and that is what I feel like doing. As I told all the doctors I have met along the way, I will do whatever I have to do to stay alive. So, back to UCLA I will go with my usual attitude and motivation. I am counting down to the next vacation which is in 4 weeks and I know it will go by fast. I will continue to dream about Maui and think less of the “plan” as it will have to wait until Wednesday. Until then, I will enjoy the sunshine and a trip to Costco!

The “second opinion game”

November 11, 2012

Being an experienced cancer patient has its benefits like definitely not showing up an hour early for an appointment because doctors are never on time and if you have filled out paper work, you become an expert in completing paperwork in seconds flat. So, why sit in a doctor’s office for an hour as you can usually find other more entertaining options.

The game of a “second opinion”

You can judge a facility by 2 things: the Internet connectivity which Jim determines that whoever set up this set this up wrong here and how do they treat the patients. Yes, they care, but again the bureaucracy waits…Here is the mystery which I will never understand. You are unable to schedule an appointment unless you have all files, discs, records to a facility. Well, we had verbal and physical confirmation of the 75 page fax. MD Anderson uses an outsourcing agency to obtain other records which I never called to see if they actually did their job. (mistake number 1 and lesson learned #567 you must follow up on every aspect of your appointment to any facility or you will get angry, frustrated, and possibly cry because it is inevitable that they NEVER received anything, lost everything, OR DID NOT DO THEIR JOB. ) You also will be informed that you must educate a resident or fellow and earn enough points in the game to actually speak to the doctor. Often if the resident, fellow or whoever is “taking notes” will not be able to keep up with your history because you are now teaching them. You can ask for a more competent person, but this usually does not work. If a resident or fellow sucks, then you will be unable to make the most of the appointment.  You will not earn enough points to see THE DOCTOR. You can stop this game and request another turn or another fellow since odds are there has to be a good one on the team.  If you have waited more than 2 hours to see the doctor and taken a flight then you might as well ask to get another one.

This was our situation. MD Anderson never had received anything even though we eventually saw it on the screen while the low man on the totem pole was taking notes. (It is useful to be an upside down reader or one who can look at someone’s screen while they are “searching”) MD Anderson’s outsource service did not do their job either. We had waited now over 3 hours and the food sucks here worse than any hospital, so we were lucky to have a good breakfast. I was so frustrated not only because I thought I did my job by faxing and confirming the fax, but I forgot that I needed to do their job too. I was too upset to explain my history. Jim had to translate because I literally was going to explode as they were not respecting my time as a cancer patient. I am told that they see a zillion people asking a zillion 2nd opinions. I explained that my family lives here, so there is already a doctor/patient relationship beyond a second opinion. Jim reminded me that my goal is to find out several things: if they have seen someone like me (who has 3 different types of cancer cells-very rare) how do they treat someone like me, and what would be my options. After ONE HOUR of explaining MY ENTIRE HISTORY, the low man “translates the info” to the doctor. I was finding this manual way of doing things very OLD SCHOOL and expected much more from MD Anderson.  We are now at the 4 hour and 15 minute mark passed. The doctor entered. Besides the horrible exams where I think they may have removed my spleen somehow or wanted to have their own personal tissue sample, I was puzzled by the persistence and questions of this team wanting me to fully understand my prognosis. They wouldn’t stop until I said that I realize there is no cure and I will either die from the cancer, chemo, or some combination of the two. I didn’t know what they wanted to hear. They seemed to explain that I did not fully understand. We had to move to the 3rd phase of this appointment which was the table/tissue phase. You entered a room where there sat the box of tissue and the diagram of gynecology parts. I decided in advance that I would need neither the tissues nor the diagram. We started again with the asking if I really understood my prognosis. The diagram drawing started like some mathematical problem. If I have taken all these drugs and my cancer keeps coming back, I would never have remission. The options as they see it are taking weekly chemo and/or uprooting my family to MD Anderson for a phase 1 trial since they seemed to think I have no options. I was confused and upset. I didn’t realize that I was a guinea pig for phase 1 options and I also didn’t realize that there was no hope. On paper, I looked like a lost cause. I couldn’t believe what I was hearing. Jim couldn’t believe it either. The reality of the situation tossed at us like I was not a patient who has an 11 year old son. I pointed this out. The doctor’s nose turned red and I began to cry. I said I would do whatever I had to do to stay alive for as long as I can. They wanted to bring in the phase 1 trial people or wanted me to make an appointment to see them. At UCLA, we had already discussed the weekly chemo, but my docs want to keep that on the back burner because they know I want quality of life.  Jim and I wanted to jump out of that room and could care less about a phase 1 person. They insisted and sent in the lady with half of a face and a missing eye. No kidding. As if things were not bad enough, we had to meet this woman. After several minutes, she explained that this phase 1 trial was also in Oceanside. Are you kidding me? So, I guess we did not have to move our family to Houston today. Jim stood up and was ready to leave. I did not have the strength to get up as I felt that someone had just smacked me in the face with too much reality. A comment was that “didn’t your doctors tell you this”.  So, MD Anderson left me with their recommendation which was that I had no options. No remission. No break. Chemo will eventually stop working since my cells they felt were chemo resistant. What about tomorrow? I become their guinea pig if it was up to them.

I decided when I wanted to leave MD Anderson it was impossible. Everything seemed to take too long. I had a full breakdown in the lobby outside the elevator. A volunteer tried to help, but in the meantime, my mom said she would come in a taxi to get us. I was broken and Jim was too. Then, in the day my thoughts came back to my team at UCLA and I realized that what was missing in the MD Anderson business model was hope and knowledge of me as a patient or as a person. Even my uncle said this to me and he is a doctor too. He said that if a patient comes to him for another opinion, he asks to see them again to get a sense of who they are. These MD Anderson people don’t know me and had no sense about me. They wanted to make their billing higher and make it worth their while even at my expense. I am not the typical cancer patient, but how would they know that. How would they know that I show up to my chemo armed with treats and sunshine? How would they know that even when I felt my worse, I went on a cruise to Europe and managed my side effects? How would they know that after an allergic reaction to my chemo, I joked that I wanted a good Halloween make up for a costume. How could they know that I have friends and family who cheer me on every day and give me the strength to fight on? I trust my UCLA team would have told me if I had no options. In fact, I remember that there are options starting January and as my doc says, “things change all the time”. My team has not given up hope and either will I! So, did I get answers from my visit? I did receive a dose of reality mixed with a couple of contacts in the So Cal area. I did get another perspective on an interesting business model for viewing a cancer patient. Yes, I realized that many people do go to MD Anderson for a second opinion when they don’t have options. I do have options and until my team tells me otherwise, I have to keep going. Yes, I will take with me from my appointment that I should plan ahead and make the most of every single day. I don’t want to be caught off guard like last time when my cancer grew and grew and I was too sick to do much. I need to make the most of the good days. I need to have conversations and say what I mean every day. I do need to talk about difficult things too, but not dwell on the reality.

Most importantly, my visit in Houston proved to be such a valuable time in seeing my family and friends who are like family. I am so proud of my niece who is growing up to be such a wonderful young woman.  I ask all of you to not let too much time pass to see your family and those who are dear to you. You never know what tomorrow will bring and it is important to say what you feel today. I cannot explain how wonderful it was seeing everyone.  Even though we had not seen each other for years, it was just like we saw each other yesterday. Yes, there was the addition of new children who are extensions of these family members. It seems strange that we are now parents. There was much laughter and a ton of love in Houston. Nothing can beat that! The extreme emotions that I experienced were worth every second. It was the extreme joy and happiness that overwhelmed the MD Anderson dose of reality. There is always hope and no one can take that away from me. Back to Vickie Girard, “for I have walked the road ahead of you and I have come back to tell you that in the darkest of dark and the deepest of despair there is hope-and where there is hope, all things are possible.”

 

Flying on a plane as a cancer patient

November 11, 2012

Flying for a cancer patient is like someone who has extreme phobias. Each sneeze, cough, choke, clearing of throat causes a state of stress. The crowd effect has a similar pre chemo nausea effect. You enter the airport and feel like you will throw up or have a panic attack. I have not had panic attacks but have had variations on a theme of extreme anxiety caused by bad news, allergic reaction to drug, pet scan glow in the dark toxic injections and other blood letting. This feeling happens in these type of crowds especially when I feel as if I am wearing a magnetic sign for germs, “germs I have no immune system so jump aboard”. Entering a plane proves to be a similar experience which can be prevented by pre boarding. Once I sit in my teeny seat, I feel somewhat safe. Unfortunately no mask or scarf can protect me as I look at the potential danger areas: seatbelt, seat pocket, and why is there a giant man coughing and sneezing over my head. Great, I see droplets of something on my setback tv screen. I can only spray it with the stuff I bought from whole foods. Another passing of the time activity.

Now I thought my nose was running which proves to be my basic challenge of having a bloody nose on and off for the course of a couple of hours. I was supposed to be reading my People magazine. Oh well, I made it and now to the next challenge.

Another day, another drug

November 6, 2012

On Friday, I was greeted as a rock star and every nurse and doctor commented that I looked so much better. Even though I was assigned one nurse, it was the team who took care of me. Each pre med was administered only after my doctor came to check on my status. With each administration, every nurse hovered over me waiting for something to happen. Each nurse asked the other ” did you check or did you do…” I was beginning to get a bit worried that they were thinking the same thing was going to happen. Jim was given the hand out for side effects. I couldn’t bare reading one more drug side effects even though the nurses highlighted the main ones…no drinking cold beverages, keeping vein warm while infusion or pain would occur, neuropathy and the list goes on. The order was put in for 6 cycles and I couldn’t even bear the thought. This would be one more year. Where is my break or should I just be happy to say I am glad to be here while this toxin kills my cancer. The doc gives me a stack of paper to bring to md Anderson and I skim the report noting that he states that I am a pleasant woman. I told him that I am glad he didn’t mention my 2 somewhat emotional breakdowns. He laughed. Of course, the nurses mention a port, but it is too late to get that on Friday.

Of course, no one bothered to mention that I should have brought my shot to increase my white cells and now left with the only option of getting it at urgent care on Saturday which was a giant ordeal. So what was easy,  turns into a mess. If I didn’t get the shot, I could not fly to Houston. I entered the chemo zone and felt more drugged than ever, but nurses said that it is due to my drug sensitivity having pre mess on weds and again on Friday. My weekend was a fog and by Monday I realized my new place of rest is the bathroom. I could barely stand and the pain started.

Today, the fog has cleared a bit, but I am spinning around as usual. I freaked out Alex to add to his morning. I had my break down last night, so I think we are all covered on my craziness. This all gets so frustrating and tiring. One day at a time is what I keep saying to myself and the other mantra is what is the worst that can happen if I forget to do this or that….Unfortunately, when it comes to cancer and you forget a pill, you pay the price.  Thoughts come and go. I start in one direction and end up somewhere else asking myself why I am where I am…then, the real mystery: where did all my hair go that fell out. I am not seeing a trail behind me, but I am forced to do this comb over effect reminiscent of an old friend. The hair isn’t on my pillow or in the sink. It is just gone. Luckily for my ole’ curly hair (never thought I would say that) I can “fluff” to create the illusion of more hair. (at least I am convinced of the illusion) Alex hasn’t warned me not to exit the house, so it must not look that bad. Very mysterious. This goes along with the purple green bruise the length of my upper arm where my teeny tiny shot on Saturday went in. I must have been punched at the urgent care? Either way, I cannot think of tomorrow, but only today. I am thrilled that I took a shower. It is a big accomplishment from being unable to stand yesterday. No one asked that it was 2pm, right?

 

October 31, 2012 “You can sing only what you are. You can paint only what you are. You must be what your experiences, your environment, and your heredity have made you. […] For better or for worse, you must play your own little instrument in the orchestra of life.” — Dale Carnegie

November 2, 2012

Halloween at chemo was a nightmare come true. All was going well until my second drug when i thought the same thing was happening, but wanted so much for it to work that i kept saying to me that it wasn’t happening. I think i waited too long, so i had heart palpitations, gasping for air, feeling the urge to vomit at the same time feeling like I was going to poop in my pants. Since i have vomit phobia and definitely didn’t want to poop in my pants, my only focus instead of getting air was getting me to the toilet. I was surrounded by all the nurses in the chemo closet plus my doctor. All the while Jim watching this happen. I couldn’t look at him because his eyes and face said it all that it was serious and worse than last time. It was an out of body experience that i fear today again even though it is a new drug.

 

After pushing more and more drugs to stop the reaction, i got to the toilet where the whole gang came with me, so again with cancer there is no privacy. What i didn’t know until after the reaction was over that my doctor pulled my pants down. When the drugs kicked in and jim alerted the group, i looked down at my legs and saw this horrible rash of dots and asked jim if it was on my face and he said yes. He told the group. I finally got out of the bathroom, went to my chair, and passed out. WHat seemed like 10 minutes was 3 hours. My only question was what was next. I told them iI felt fine, but my nurses knew better and told me that the drug could not be used again. We would need another drug. I told my doctor let’s finish this up with the new drug and he looked at me half smiling with his eyes full of sadness and told me next week. Of course, next week is too late for our travel plans to Houston. II asked if Friday was okay and he agreed. So, as i prepare myself today mentally, i have never been more afraid and i know this is not helping my family. I try to think positive and always with hope, but my body already had one chemo drug in it plus all the other crap they gave me. I wonder how i will do this. I see Alex’s face and Jim’s face in my mind and i know i can do this. My body is getting broken in places that need rest. My bone marrow is trying hard to work for me, but is crying out for a rest. My stomach is a mess, but i am used to this by now. This new drug will give me a new side effect which is the inability to drink or eat anything cold or it will feel like razor blades. Even if i inhale the cool California air, it will have the same effect. Just add this to my knowledge of side effects. Of course, there are a slew of others, but those seem to be the same. I desperately need a break from this cancer job. My head is not in the game. I look forward to sunshine days ahead.