First Come First Served….

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!

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