“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

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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One Response to ““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”

  1. margie Says:

    Joanie,
    Isn’t it amazing what we learn about our medical system while going through this thing called cancer! I’m sending you prayers and loving thoughts constantly. It’s so good to know you have your mom and Jim by your side, and of course, Alex. I love you, and miss you!

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