Archive for May, 2013

“It is not the critic who counts;not the man who points out how the strong man stumbles, or where the doer of deeds could have done them better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood;who strives valiantly;who errs…(and) if he fails, at least fails while daring greatly.” Theodore Roosevelt

May 30, 2013
In the days since my exit from the hospital, there were more lessons learned. Lesson number one: when it comes to a hospital, don’t exit until you are ready and don’t exit until you fully review your meds and needs. Otherwise, guaranteed you will be back in the hospital. If it wasn’t for Jim’s personal knowledge of my history of antibiotics and asthma treatments, I would have been back in the hospital. If it wasn’t for my mother staying with me and giving me drinks and food on the hour being by my side every second in the hospital and at home, I would have been back in the hospital. I needed new meds for breathing (kind of key), more antibiotics, and a different inhaler. I don’t know what would have happened if Jim and my mom were not here to take care of me every minute like a 24 hr nurse team, plus I still had a fever when I got out of the hospital. I’m not saying I should have stayed longer, but the exit strategy could have been much better. Plus, with zero history of asthma and no pulmonologist, plus I have friggin cancer wouldn’t it have been better to refer me to a critical care pulmonologist instead of a regular one? Plus, who knew you had to market yourself to a critical care pulmonologist which there are not many in orange county. I thought having stage Iv cancer was enough, but apparently not. Even though I have insurance that does not require referrals, a critical care pulmonologist won’t see you without one. Our medical system is so broken. I guess if you are too sick to talk or don’t market yourself the right way or don’t have an internist who is available by cell 24 hours for you, then you just die or definitely go back to the hospital. The pulmonologist I saw actually asked me why I would be wearing a mask. I learned more from my nurse at the Hoag cancer center when she listened to my lungs than I did from the regular pulmonologist.

After my visit to the pulmonologist, I had a call with my oncologist. I have never heard such concern in his voice as he explained the risks of getting chemo while your body fights pneumonia. We went round and round since there is no clear answer. Would waiting cause the cancer to grow or would taking the chemo cause the pneumonia to get worse? I knew I couldn’t get the chemo. I could barely walk up and down the steps. Since my body was in shut down phase in the Emergency dept, I decided it was talking to me and telling me not to push my luck. My body has been doing some amazing things especially fighting all this cancer since 2010. So, would one more week really hurt my cancer fight? My blood work ever looked better and I came out to the waiting area to my mom and Jim telling them I was going to frame this labwork since it was so beautiful. Of course, my Hoag cancer visit didn’t go without issue. I had a nurse who is the only nurse who has trouble accessing my port. Her lack of skills was making me so nervous that I asked not once, not twice, but three times to get another nurse. She finally heard me. Since they have issues canceling my appointments, I had to get evidence. Never a dull moment or an easy day in living as a cancer patient.
Now the pneumonia is no fun. Waking up unable to breathe with the tightness in the chest and coughing  non stop so I now have back pain, I have the nebulizer by my bed. I frantically grab the pieces, pour the vial of med into the piece, put the “pipe” into my mouth while simultaneously pressing the on button with my toe. It is such a spastic frantic motion that I know that giving my body an extra week of rest was the answer. Every move must be calculated, every conversation well thought out in my head so I don’t use too much oxygen talking, and there is no up and down the stairs since this will cause the crisis of needing a breathing treatment too soon. Oh yes, then there is the inhaler too which takes so much coordination that I now understand why Alex has trouble when we had our peanut incident and he was timing it all wrong unable to get the meds. Plus, this inhaler causes thrush(one more thing I don’t need), so I have to be sure to brush, rinse, rinse, brush,waterpik my mouth after. Alex inevitably always needs a question answered when I am doing the nebulizer,so pen and paper comes in handy or some hand signals to yes or no questions. I am sure it is hard to imagine me barely moving or doing anything “fun”. The fun just changes, so whether it is seeing an old photo of my nephew, niece, and Alex in diapers or shopping online with SUPERVISION, or seeing Alex’s face as he walks in the door, my fun has changed or having dinner at the dining room table listening, laughing, and some talking about the day with Jim, Alex and my mom. Am I making the most of every minute? I am making every effort to get better as fast as possible even though my oncologist tells me 6 weeks is the norm. We all know that I am not normal, but 4 weeks is a long time for me. As long as the breathing becomes easier and the coughing less, I will be back on the road to fight again. Each day is a precious gift and I feel so lucky to have all of you in my life and even more thankful to be here today.
On a side note, since I wasn’t having enough fun, my hair is staring the clumping out and my eyebrows are at the connect the dot phase, plus I have blank eyelash spots. It is only hair, but it is annoying and I will return to the wig for the summer again. Just more fun and games in living with cancer.
p.s. I WIN! the critical care pulmonologist WILL see me since I look so bad on paper! Yipee for looking bad on paper.
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I refuse to die from pneumonia

May 26, 2013

It has been a blur. Last Saturday, I was walking around the zoo talking to a keeper about the grandma orangutan who loves to see you put on lipsticks, brush your hair, wipe your hands with hand sanitizer. We enjoyed the day to the fullest. Then, that night I started feeling bad with a fever of 103. I phoned my doctor who said to go to the emergency dept. So, I did. As I waited for things to start working, I realized my body was shutting down. I have never been more frightened in my life. This could not be happening. After all my fight, friggin pneumonia couldn’t do this. I gave into morphine and transmitted messages with my eyes to my friend (who happens to be the charge nurse), my nurse, Jim, and fellow friends I have made in the ED from prior blood transfusions. My body had to respond. I told the doctor I wasn’t going to die from pneumonia and I really didn’t think he believed me until later. I cannot thank my nurse, Lisa in the ED or Nikki enough. They understood me and my wish to live and my inability to “go home” and fight pneumonia. I was admitted and chose to ignore the severity of the situation.

So, I learned more lessons in the hospital. Ask for what you need and don’t accept no. Keep asking even though there may be someone else screaming louder or needing more help. You must have someone with you at all times. You must have someone taking notes at all times. You cannot be left alone or there may be medications you didn’t get because you forgot to ask or things of comfort that you forgot to ask for since you become sleep deprived. A doc cannot understand what you are thinking as good as they are, they are not telepathic. Explain clearly and ask for what you want. Tell him your goals for the day or for the night or for your exit. You need to know that he is thinking the same way and if not, what are the reasons why. I was fortunate to have some nurses who thought for me or thought ahead for me or knew what I would want. You may not be so lucky. I was told time again from nurses and doctors that pneumonia is serious and healthy people die of pneumonia. I would have to take it down a notch or two or three. The weekly chemo compromises my immune system drastically. I must wear a mask like I wear a hat. I must take it easier than easy to get chemo. I am lucky to have one clear lung, but I am really a 2 lung kind of gal. I am usually full of a lot of talk and words. I realized that when air is limited, less talk and less walk is the norm. Lucky for new technology that a new special breathing machine which was very well explained by respiratory therapists (otherwise, I would have cried with the pain, but knowing the benefits it was worth every second of pain). This machine is only one year old and it forces (really forces) air into your lungs (not so comfortable) then does a delightful combination of vibration and forced air. It can reduce pneumonia up to 50%. So, I did this routine once every 4 hours resulting in a night of 3 hours of sleep. I watched as the seconds ticked by on the clock and said to myself repeatedly that I wasn’t going to die of pneumonia. This one lung gal realized that I needed my mom to stay with me and I couldn’t be left alone. My mom is here plus my A-team of Jim and Alex to remind me about meds or ask me if I did this or that. It takes a team. I know alone is not a recipe for success. Without all of you, I could not have the strength. My biggest fans of Jim and Alex keep me fighting every second even with one lung.

At home is my bed and my stuff I felt relief to walk in my house. What I didn’t expect is what an obstacle my stairs are. My trips up and down the stairs are limited. The benefits of living with a fake doctor are too numerous to mention. Having never had a breathing issue, I was unaware of some danger signs. My pale ghostly translucent face is indicative of not getting enough oxygen. My deeper chesty cough is indicative of things getting worse. Lucky for my wonderful internist, Dr Angela Miller and team who care more than any team of doctors office ordered another inhaling drug for the nebulizer.  We are a pharmacy which has other breathing inhalers plus extra antibiotics. As I finished one antibiotic and was left with one, I added another until this holiday weekend is over. I am a sloth, but in a good way. I am making every effort to get my chemo on Weds. Talking a lot is not an option because talking requires more oxygen and I only have half my lungs. All efforts must be minimum to reserve strength for recovery. I refuse, refuse, refuse to die from pneumonia and I also refuse to give up on fighting my cancer.  Timing is everything, so yesterday in the mail came my “expert opinions” from doctors across the US who reviewed my case. As I read the reality of the words, “consider stopping chemo and palliative care, blah, blah, blah”, I cried and closed the report. They do not know me. I will do everything I can to get better each and every day. My chemo is working for now killing everything in its path. I wish the chemo worked faster!  I refuse to give up. The “blah blah” has no power in my mind. The “experts” don’t know me and  just have seen my case on paper. I know that on paper I don’t look great, but once a doc sees me, it is usually the face of surprise and disbelief when they hear me and see me. My inner core is something that cannot be written down on paper. They do not know me. My oncologist has come to understand me. I am the expert on my care. I know what I want and I am not just a case on paper.

While I miss my sunshine moments and my fun weekend, I am finding fun and sunshine in every day seeing those I love surround me with so much love. This wasn’t my plan, but then again living with cancer always throws you curve balls. My message is always clear to all of you especially because I cannot physically do what I want to do:

1. make the most of your day

2. please don’t sweat the small stuff

3. get rid of the negativity in your life

4. only surround yourself with those who give you sunshine

5. most of all give your kids, pets, parents, and friends some hugs-everyone could use one of these

ENJOY ENJOY ENJOY THE NOW, the moment, TODAY!

My brain on chemo…

May 8, 2013
Watching a program on the 80s, I saw the commercial for “this is your brain on drugs” with an image of a fried egg. The brain on chemo is something similar except the egg yolk is broken too, the edges of the white are fried and the egg is almost burnt. With one chemo drug, a slight fog sets in, but I am able to remember details of what I was doing. Everything is in slow motion. Two drugs is something I must have blocked out. Back in 2010, I had 3 drugs. Last Thursday, I was convinced that I wasnt that bad except I wasn’t being completely honest. Jim put me on house arrest and checked on me throughout the day asking me what I was doing when I was wandering around the house. I couldn’t remember if I brushed my teeth, ate anything, or even went to the bathroom. The fog was so thick that I just gave up entirely on doing anything productive.  I used to be frustrated with chemo brain because this was something I wouldn’t allow myself to enter this phase of cancer. Now, I accept that is part of the treatment and I am not who I was and am always changing based on the ever changing side effects of chemo. Unfortunately, this is not something Alex wants to understand since yesterday I could remember algebra like tying my shoes, but today it seems like another language. It is so surprising to Alex as he will say, “yesterday you understood this!” I try to explain that this is my brain on chemo, so just say “no” to drugs. Some days we can laugh about it like ranking me a minus 10 in brain activity for the family and other days, there are tears, anger, and frustration.

Is this combo of drugs working besides increasing the side effects? We will not know until end of day today. Off to Hoag, as the world turns for weekly chemo…By the way, it is World Ovarian Cancer Day. Spread the word, know the symptoms, and BE your own advocate for all medical issues!

Why do so many cancer patients die? Because of the incompetency that surrounds them.

May 1, 2013
My cancer job started with my attempt to get my weekly chemo local. Also, to try to get a shot sent to me just to make things more convenient since my insurance covers that. Nothing was easy. Every call, every conversation required not only my full attention to details, but my demand to be in control of my care, my demand for something that my insurance will cover, my demand for making things easier on me the PATIENT. Of course, by now I am used to the waiting and more waiting. As on the Big C show, Kathy the cancer patient sarcastically tells her doctor, “thanks for finally showing up”. As a cancer patient, you hope for the one person in your every day chain of events to have some compassion, forget the intelligence because somehow most office staff (outside of UCLA) seem to think you are making a hair appointment or a pedicure. So, after 6 phone calls and a doctor visit, Hoag cancer center called “as a courtesy” (so the nurse told me even though I called there 6 times) at 630 pm to say that my chemo wasn’t going to happen because of a wrong signature, wrong paperwork. Are you kidding me? Not sure how it isn’t their fault since during my last call I was assured by Ms. A that everything was good and all set. I guess another lesson learned that you cannot believe anyone and must get evidence. After tears and debate with the nurse that she  just thought chemo could just happen next week or reschedule (AGAIN not a hair appointment!), I called all doctors on cell phones, Jim scanned and sent emails, and we waited. Luckily, my UCLA oncology doc did phone back to say he was sorry and he would call in the morning, but worst case is that we would have to drive up to UCLA AGAIN. To say the situation is frustrating as this morning it is not resolved is an understatement. To know that nurses and offices just don’t think this is a priority is just beyond belief.  When fighting every day for your life, do you really have to fight for every paper, every signature, every treatment?What cancer patient has the energy to do this daily? (let alone for over  3 years in a ROW!) is there someone on my side? Yes, my UCLA oncologist.Does he have the time for resolving all these hiccups in my treatment…he tries and makes every effort. I still don’t know what I am doing today, but I know I will get chemo somewhere. It is just completely baffling that every step of the way is a challenge. Unfortunately, I am not even talking about the cancer progression. It is the daily chore of demanding the treatment I need that would be easiest for me. This system is so broken that when you meet someone or anyone on your side, you have to be thankful and grateful. There are so few who will be on your side and this is the unfortunate truth. I also cannot forget that mistakes can happen too. If your nurse or doctor doesn’t have the new hospital system down or doesn’t have the attention for details large and small, then a lot can go wrong. It has happened to me and I pay attention and have Jim at my side every chemo to ask too. I refuse to accept mediocrity of care for cancer treatment or for any medical treatment. You shouldn’t either.  I cannot stop questioning or demanding for the best. I just don’t have a lot of energy left to do this and no one can do this except me since HIPPA (sp?) dictates this. So, as the clock approaches 9am, I will begin my battle for demanding my chemo and demanding the right paperwork and signatures. How about if every patient gets hired as a temp worker and PAID for all the incompetence they have to deal with? Again, I am always accepting of  a simple apology instead of the finger pointing and denying that this is “their fault” and somehow it is mine.  Another day, another battle, another fight, and I haven’t even had my pre-meds for chemo.