Archive for June, 2013

Reality of the slow road recovery from Pneumonia!

June 21, 2013



So, besides being in the house for officially 4 weeks, I am now on some major steps backwards. I went to see the pulmonary doc and had to skip chemo (not related). I started experiencing some increasing issues with breathing and more coughing. I started increasing my inhaler until I saw the doc on Tuesday. Of course, what do I know about pneumonia besides it kills people? “Do I want to get better”, he asked me. Guess he wasn’t diggin my 20 questions, but that was fine I had my mom taking notes and Jim asking another dozen. He was one of those docs that has a bunch of patients who don’t listen to him over the age of 80 who are too stubborn to do what they should. He also was strangely enough a pulmonary doc coughing an asthmatic cough while talking. I was glad to be wearing a mask. I was wondering if he was a good listener too in being a patient as he continued to cough. There was a question of whether this was like the dermatologist I once saw with a giant wart on his face…hmmmm. My fear disappeared after he spent over an hour with me and did a thorough exam (this was after waiting over an hour for him). He informed me that I needed to up the breathing treatments to 4 times and day, increase the inhaler, and start steroids. I will go back in 3 weeks and have a ct scan. Of course, yes, I must wear a mask to avoid germs, but I am no longer contagious. The lung long lasting effects of pneumonia include this type of ongoing issues for 3 weeks more. Okay, I am admitting that I remember everyone saying in the hospital that it takes 4-6 weeks to recover and being a cancer patient, it can take 8-12. I am shooting for 8. He seemed to know his stuff, but guess what my rock star hubby knew more about the mechanism of steroids. Points for the rock star hubby and guys, remember docs do not know everything. To have success in any medical illness, you must control your own care. I have learned this time and time again. Without all the research Jim does to start the conversation, I would not even be here and it always allows us to have the right conversations with all docs (we have to remember that docs have other patients, lots of them). In order for you to get their attention, maximize their time, and go to the top of the list, you must know what you are talking about. You must know your own body, understand the drugs you are taking, know about future treatments, and continue to ask questions and communicate via email,text, phone calls…whatever it takes to get better. Granted it does help to bring some fancy VIP cupcakes every once and a while. This method to my madness in surviving with cancer came into play on Wednesday.

With low blood counts as a cancer patient, I have come to understand that your body gets used to operating at a new low level. For example, your hemoglobin (oxygen in your blood) can be low at 12, but my norm is 10. For some that would cause a problem being out of breath. For me, it doesn’t seem to effect me (or didn’t prior to the pneumonia). I have come to accept the pale color to my skin tone (which can be cured with some good makeup) as long as it is not cancer gray. That shade is often worn with hunched shoulders, droopy face, and all look of hope withdrawn. I have had my moments, but prefer makeup. This is all caused by anemia brought on my various 14 chemo treatments. Now, with the white cells, that is tricky and you can walk around like a ticking time bomb (guess I was like that when I picked up pneumonia) and you don’t know a thing until you get your blood tested. The crisis begins when your neutrophils are 1.2 and guess what?  mine were 1.21. I swear my body loves to mess with doctors.This means the fuse has been lit and any potential sneeze, cough, spit, germ could cause a cancer patient pneumonia or other varieties of diseases. My chemo cocktail eats the blood along with cancer cells. Some are not so lethal. Lastly, the platelets which are the parts that help with clotting. I knew from last week that my platelets were already below 100 (limit for getting chemo at Hoag) but UCLA is all about cancer first then fix body after. I went from one week having glorious normal amount of platelets that I haven’t seen since before I started chemo back in 2010 of 259! Then, in one week of chemo, my platelets were 79! I knew they could be low, but how low was the question. My platelets were now a dangerous 46. This was where the crazy started! Let the games begin of negotiation between local doc and my UCLA Westwood doc. Jim and I already knew the plan. The delicate balance of living with cancer is to not kill your bone marrow or your bodies ability to make it’s own immune system. the back and forth went on for way too long. We already knew no chemo for me since the pneumonia was another thing to consider in this balance not to be killed by chemo or pneumonia or cancer! It was decided that I would go back on Monday and if my body did not kick into gear then I would have to have a transfusion. The real problem comes back to my lock down once again and warning not to do any cutting, bumping, scissor use, or anything that could cause any bleeding. (like flossing) Too much to consider, but with threats of reality of what I could face if I don’t obey, I decide to comply in hopes of freedom of future real weeks off from chemo because cancer is going, going, gone. Now, some think reading a PEOPLE magazine can be dangerous to your mind, but who knew that one turn of a page could cause a potential bleed out from a paper cut. I used a box of gauze, roll of paper tape, and even went into my reserve of cute band aids. Sorry to Alex that all camouflage band aids and other neon band aids are now gone. Hey, the bleeding stopped.
All this blood learning has brought me to the next lesson learned which will not be a lesson until I know on Monday if it works. Bone broth! I never liked to eat osso bucco (sp?) and not a fan of sucking on bones, but it does make sense. So, off Jim went to buy an organic chicken and off I went to find a real chef recipe which is really about making stock. Apparently, people swear by this, but eating the bones will boost your own body’s immunity. Is that why my grandma always sucked on bones because her mom did? Maybe, the purpose was to get all the meat off, but they say chicken soup is medicine? It is a whole process with the right balance of vinegar to dissolve the bones and a process that removes the meat for later, puts the fat back in, and is an hour by hour project. Hey, at least it passed the time on lock down. So, I did drink the broth and honestly it was gross looking cold with the gel from the bones, but once heated looked and tasted like regular chicken broth. Stay tuned.
With all this lock down, I have noticed Alex becoming increasing frustrated and angry. I kept thinking that it was the hormones. When I asked him at 1am after another night of him waking up with bad thoughts, he did talk to me about all that was bothering him. I am up, up, up, because of all the steroids. (when coming back from weds attempt at chemo, I told Jim that I really wanted to wash the floor. He looked at me and calmly said, “it is the steroids talking. Go sit down and have some water.” yech steroids! Steroids cause your brain to work at 1000 times a minute, but every second you are distracted and start thinking about 1000 other things. The path of post its that you write on only cause a trail of confusion with words that are supposed to trigger something, but mean nothing. The pile of post it rises.) Well, Alex explained to me that I haven’t been able to do anything for too long and this was like I was when I had surgery, so are things getting worse? Nope, I just needed to reassure him, but it didn’t mean he liked my answer of 3 weeks more on lockdown. We talked about him making a list of all the things we should do in the summer. I have always been a big fan of lists. He knew just the idea which he mentioned that he got from his friend.  He was going to start a summer blog.This way we could stay on track because we were “way behind”. He also has been concerned about his trumpet playing as he really enjoys playing. With a class of 60 and his trumpet section not being fans of listening, he had to talk to his teacher throughout the year to ask for help. Lucky, a friend came to the rescue as friends often do and Alex will do a short trumpet camp at La Paz intermediate school in mission Viejo. So, we solved some problems temporarily. Having a parent with cancer is not an easy road for a soon to be 7th grader. I ask you check out Alex’s blog, leave a comment, or vote for your favorite summer activity on his poll.  He was thrilled to know that his blog travels with kids (or whatever he called it) from last summer had over 200 hits with readers from Germany, Greece, and the US.
CHECK OUT ALEX’s SUMMER BLOG-leave comments, vote….
My last steroid influenced  topic is a personal one and just because I am visiting this topic does not mean I plan on giving up my fight to win. It has been during my weeks of lockdown that I have met, heard about, and read about warriors who choose to “die with dignity”. Now, I have to say I cannot personally call anyone a warrior who refuses chemo just because of the hair loss and fear of side effects especially if a doc feels that chemo could either keep the disease stable, kill most of the cancer, or even buy time until another drug. It is ONLY hair. I have still chosen to wear a hat instead of the wig. Yes, it is odd that’s only have 3 eyelashes on one lower eye lid, but who is counting? Should I try to rub off the others on the other eye for balance. I am connecting the dots for my eyebrows, but it is now a game. Cancer is frightening and for most there is no cure. Yes, drugs have horrible side effects. So, I have issue with those who are giving up and have options especially since some of us have to fight every second of the day to survive. There are some who don’t have options and I fully understand and respect the right to die with dignity. My docs (all except one I met) have told me there are still options. None of them have told me to pack my bags. So, if there are options, why not give them a try. If there are options, respect your body enough to allow the drugs to work. From my very first nurse who is very near and dear to my heart, she told me you must allow your body to heal with rest, love of yourself, surround yourself with positive people, family, and don’t run around like a crazy person…find the balance. It is a balance walking that tightrope to fight to live every day. I can try to respect those who decide it is too much. Who am I to decide what is too much for some and not others? I think you all know me now that I can respect the decision of others to stop treatment, but I cannot live with myself without saying something about this roller coaster ride of living with cancer. Yes, there are my pity pot moments, but life is happening all around me and I want to be part of the living for as long as I can even if I am on lockdown. My will to live is so strong that it seeps out of every pore and I think my body, mind, and spirit know this too. I choose to live now even if the steroids are making me a bit crazier than my normal crazy. There is one fun thing in every day, so find your one fun thing. It is difficult to know how to support those with cancer. From my perspective, it is the small things that make the difference. Knowing that you are avoiding emotional vampires, living in the moment, and not sweating the small stuff makes me one happy cancer patient. Being around my family is the best medicine around!

Taking one for the team and lockdown continues

June 14, 2013

Being trapped in the house, I have come to realize the benefits having avoided really looking at my house for over 3 years. In recent weeks, I have reviewed piles of papers and found a variety of things gone missing (it wasn’t my chemo brain that forgot them). It was the prioritizing of every day fun to looking at those piles. I can assure you (for those having piles around your house) that nothing critical was found. It was a treasure hunt of missing notes, papers, toys, and earrings…all items that could stay missing. My point still remains to not sweat the small stuff and enjoy the important moments making memories with your family and friends. For me, when I was unable to talk, the fun came from hearing Alex play the piano or his trumpet or listening to his tales from the day. Now, let the talking begin, but I am still to remain away from people. I see the pulmonologist next week.

With Alex’s record breaking tests and projects due in one week, he barely had any sleep. This is combined with his worry about me brought the germ carrier home with a cold. Jim was in full protection mode and kept Alex away from me, plus reminders about hand washing, tissue disposal etc…This led to Jim getting a cold which he says is better than me going to the hospital again. So, while I am almost able to breathe, Jim is a casualty of what you will do for love.

Before the cold, came our visit to UCLA which proved to be very painful now that we have experienced a traffic free drive to chemo in Newport. My “home away from home” was missed in ways I cannot explain. This team of nurses besides giving me the VIP (did the lemon cupcakes persuade them, don’t know?) they give me support that is unmatched. They have seen the ups and downs of the treatment and learn to read beyond my smile and to see the pain behind my eyes. They are like having a bunch of mothers reminding me to eat, take meds, and asking important questions that only come from being a compassionate nurse. They laughed at my stories of getting pneumonia from an orangutan and telling the hospital staff off when they told me I could die from pneumonia. Jokes were made by all about my inability to talk during the bad phase of pneumonia. They told Jim that it must have been very quiet. Unfortunately, the chemo from last week decided to eat my blood and if I was in Newport I wouldn’t have been able to get chemo without a giant fight.  Of course, in UCLA there is an understanding that your blood counts are a fine line of walking that tightrope and chemo must be administered to prevent the cancer from growing. I did get my chemo and mentioned that most likely I wouldn’t be able to get it next week. My doc was preoccupied and I let it go. I have been that patient needing his undivided attention on clinic day during my past moments of crisis. He juggles all the patients of who needs the most help at the moment and he does this well since he is always available to us day, night, or weekend when crisis occurs. So, I let it go and he responded that we will see next week.

Tumor marker down!!!! My goal is to reach normal before school starts. Jim and I calculated it out since most drugs only last a maximum amount of treatments, this should be possible and we remain as always very hopeful. All those years in school studying math (yes, my degree is in math), I didn’t foresee how much numbers would play such an important role in living with cancer.

On a side note, Jim had signed me up for a drug company trial interest list. The drug company asked me if I wanted to be on a panel to answer surveys and questions regarding treatment, nurse care, drugs etc…Since I meet the criteria having the maximum amount of chemo in the shortest amount of time and I am alive to tell about it. I am all about helping others, and when they told me they would pay me in amazon gift cards, I couldn’t respond fast enough. Little do they know about online shopping as a treatment for side effects of chemo? I will not mention the fact that I have ordered the same items multiple times or shipped underwear to my dad for fear they think my chemo brain is too severe to help them discover the answers they are looking for.

I did take time this week to congratulate my doc on his birthday and thank him for helping all his patients, but most of all I wanted a toast to him for just plain ole’ being alive. Thanks to all my cheerleaders near and far. Without you, I would not have the strength I do to ride this crazy roller coaster ride of cancer. Summer is here! Enjoy the sunshine.

To my father, thanks for making continued sacrifices especially when it came to my education and all that traveling we did as a family. Those travels made memories that we still talk about today. Thanks for the continuing efforts for all the grandchildren. Without everything you do, I wouldn’t be the person I am today.  I love you.

To my husband, thanks for being the best father to Alex and always explaining cancer in a way he can understand and handle. Your ability to be the rock for us has contributed to Alex’s successful transition to middle school and his confidence and acceptance of himself, our lives, and living with a mom who has cancer. Thanks for working so hard for us to make all our vacation dreams come true. Thanks for being my rock star and number one supporter. I know without you that I wouldn’t be here today celebrating another father’s day with you. Thanks for being hopeful and strong. Thanks for always looking for the next drug to try and thanks for being a fake doctor. Most of all, I thank you for being you. I love you.

Happy Father’s Day to all those rock stars out there! For those who don’t have their fathers with them, celebrate them!


First Come First Served….

June 7, 2013

Back in the cancer fighting game, I needed to confirm that I would be getting a private room for my chemo on Weds. I have only exited the house to take 5 minute walks (timed by my mom, nurse), chest xray, and then chemo. I was told when I called the first in a series of people at the Hoag Cancer Center that a private room is first come, first serve. I informed them that I wasn’t making a dinner reservation for a table with a view, but having life saving chemo. Wouldn’t they rather have me in a private room coughing instead of a group germ exchange (even though I would be wearing a mask). After asking to speak to the supervisor of the supervisor, I finally get the charge nurse who informed me that this would not be a problem. Of course, I added my other concerns with requiring a nurse who knew how to administer chemo, access a port, and follow a chemo order. The charge nurse assured me that this would be taken care of without a problem. So, I arrived on Weds. with my mom since Jim was out of town. We were escorted to the most gigantic room with a view of a lovely tree and a private potty. Wow! The benefits of having pneumonia are now realized. I begged for my xray results, but now there is a hierarchy of accessing my own records. I did sign the form which gives me the right to my own records. I have a great nurse who “drops” the report at my feet. The report shows significant improvement in my left lung and I am only left with a middle left lung “pneumonia” stuff. My right lung is all clear. I thought this was the case as I am having to take less breathing treatments. For the first time yesterday morning, I did not cling desperately to that damn nebulizer hoping it worked fast so I could breathe. Yesterday morning, I actually could take 5 minutes leisurely before I hooked myself up.  Of course, per doctors orders I am to “hibernate” for another 4 weeks especially avoiding crowds of any kind and enclosed spaces.

I talked to my nurse who gave me the pneumonia speech one more time for good measure. I felt that her voice was strained or upset and asked her what was bothering her. She told me that pneumonia is all across the U.S. and she was so happy that I went right away to the hospital. She lost 5 patients this week. She did not want to tell me this information, but I just had to know what was bothering her. She told me that Jim and I most likely have saved 7 lives with our information that Jim has researched. My new weekly chemo is all the rage since it is low dose, but more often. It has less side effects and has less issues for your bone marrow. These are women who don’t live a big city or have a major cancer center nearby or one woman with 5 children who has had as much chemo as I have had. So, as Alex would say, “a net gain of 2”. This week we are ahead. So, as I complain about not seeing anyone and exiting the house, I feel thankful to be alive. Unfortunately, like childbirth and the other 3 years of chemo, I blocked out the nausea and other side effects from chemo. Alex did the same as he wondered why I couldn’t get out of bed or why I passed out nightly. We had to remind him that it was the chemo. His face said it all. He is annoyed like I am annoyed, but it is what I have to do. For me , there is no other option. I will continue to fight and try drugs as fast as they get approval or as fast as they prove to be at a tolerable toxicity level. In the words of my oncologist, there is always something to try.

Again, your calls, your texts, your notes are very appreciated. I love the cute drawings from your kids and the funny cards. I love the trashy magazines too. I feel so blessed to have so many thoughtful friends and family around me. I feel especially blessed to have my mom here when Jim was gone as she made sure I was drinking, eating, sleeping, taking the right pills, and breathing.  Another thoughtful gift which is so much appreciated is a meal service called Sunfare which was given to us by a special friend (who has always been thoughtful during this crazy cancer ride). We get to order exactly what we would eat and they make some great salads. Alex is especially enjoying an appetizer with every meal. Unfortunately, this has raised the level of expectation for every meal with an appetizer. Next he will want a palate cleanser.

I miss being around people. As a cancer patient, I always feared every cough and sneeze. As a cancer patient with pneumonia, I fear the outside world with germs. I just cannot afford to get anything else when my body is so compromised. Soon, I will not need the naps every day and I look forward to chatting and getting online more often. They say California has June gloom, but the ocean air over the canyon to Aliso Viejo is something so special and re-energizing. So forget about the gloom, get outside as we are so lucky to live where we live. Cancer patients pay a lot of money to have ocean imagery streamed to them for visualization and healing. We have it so close and you will enjoy the gloom before the summer beach groupies come to So Cal. Take deep breaths for me (I am almost there). Enjoy the last days of school for your kids. It is a different world than when I was a kid in school. Our kids accomplish so much at such a young age.  So, here are my three weekend rules:

1. Be Kind

2. Be Proud

3. Be in the Now-ENJOY today!