I refuse to die from pneumonia

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!

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3 Responses to “I refuse to die from pneumonia”

  1. Pendar Says:

    The ladies in my prayer group and I have been praying for since I learned about your pneumonia last week…I am so happy you are home. We will continue to pray for you. XOXO

  2. Valerie Gelb Says:

    Wow! You are so amazing Joanie! Your strength, determination and positive mindset are absolutely incredible! As always you are an inspiration! Rest and keep quiet so your lung can heal… As you said, you are a 2 lung kind of gal 🙂
    xoxo
    Valerie

  3. Ellen Mogasemi Says:

    You are an amazing person! Pneumonia will NOT win with your attitude and positive frame of mind. With all the curve balls coming at you, the Angels should name you as an honorary catcher on their team 🙂

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