Pneumonia


SEPSIS. PNEUMONIA. ACUTE RESPIRATORY FAILURE WITH HYPOXIA. 

I had all of this since I last wrote huddled under my covers, teeth chattering with the chills.  I was released from the hospital late this afternoon following a truly intense six days.  I still have pneumonia. 

I awoke, very early Thursday morning to a feeling of hollow dread, as if I had food poisoning.   I could hardly keep water down.  I have never felt sicker.  My son came and sat next to me and fed me glasses of ginger ale on ice for hours, which kept me hydrated.  Finally around noon Thursday it became clear that my breathing was shallow and difficult and I had trouble speaking in full sentences.  Mom, can you get in the car or should we call an ambulance.  I got in the car. 

At the ER my pulse oximetry was 84.  People start taking oxygen at 88, so I knew how bad 84 was. I was left in a room with a closed door and I was confused.  I watched the screen and watched my pulse ox drop 84, 81, 79, 76.  I knew what happens below 76 and I was very scared.  

The IV antibiotics and saline started to flow shortly thereafter and I was admitted to the hospital.  I was put on oxygen and cared for until my energy and oxygenation levels returned to normal on Sunday. 

YOUR ONCOLOGIST'S JOB IS TO MANAGE YOUR CANCER TREATMENT WITH YOUR THE CONTEXT OF YOUR OVERALL HEALTH.  They know best how to help you manage your overall health, but never stop reminding them what your weak spots are.   This is the point.  Cancer drugs are strong. They stay strong as your body gets weaker.  Please re read that sentence.  Doctors have many patients and cannot remember the weaknesses of each of them; remind them what your weeks spots are. 

It is a wonderful when one's cancer levels in the blood fall. Killing cancer needs to be balanced with some holistic care for a patient with no immune system.  There is no point in killing my cancer if you kill me in the process.  Please tell your doctor this.  I'm not being dramatic, this is what I just lived through.   Doctors can sometime be very focused on curing what they are charged with fixing, but an oncologist also becomes the QB of your healthcare; to keep you alive and as healthy as possible.  They must consider your weak immune system, the strength of your chemo and related side effects with their focus on reducing your cancer.  Communicate with them. 

When you have your next appointment with your doctor, bring one question, "What would you suggest that I do to keep myself healthy and my immune system supported during these cancer treatments?"  Please do not leave until you get a few good recommendations.   If your doctor tells you that there is nothing that they can suggest to help you stay healthy, find another doctor.  

The reason that I dramatized the point is not only is it scary, (it is all true, by the way), it is plausible and possible.  It is crucial that as a myeloma patient, you make your immune health the focal point of your own life.  Your cancer doctor will cure your cancer.  Ask him/her how you can care for your immune system and your health.  Don't let them say that there is nothing that you can do.  Please just make your own health and care the focus of your life and efforts.  

Cancer care is a seesaw: a balancing act between your immune health and your cancer.  Each time you see your doctor, make sure that you understand what they are planning on doing to keep the seesaw balanced.  

FWIW

Stay Warm.  Getting chilled challenges your immune system.  Avoid catching a chill. 

Eat Well.  Feed your body, soul with healthy food: grains, fruit, vegetables, soups. Avoid greasy, heavy, sugary foods and opt for more steamed foods, rices, teas, etc. 

Sleep. Get as much sleep as you need each night, 8-9 hours.  Rest is useful, too, in case you are in bed with your eyes open for part of that time, 

Don't push yourself.  This is hard to change if you are used to always being busy, because there are always things that need to get done.  Try setting a time limit for big efforts.  Thirty to 45 minutes work then 15 minutes of rest.  If you are tired or winded, you've done too much, stop then.

Drink tea. Take breaks. Don't rush.  Don't be around people who rush you or stress you out. 

Sending love and support. 

PS - I found out after this episode in the hospital that I have hypogammaglobulinemia - I was born with a terrible immune system so please don't worry that cancer drugs alone will land you in a spot like I was in; they probably won't!!! I started cancer with a very weak immune system, which is probably why I got such a bad case of pneumonia. 

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