I talked with one of my friends today & he wasn’t aware that I was doing a blog daily about this cancer journey. So I’m sending this post to everyone in case others are not aware every post I make daily is on the main page at mindfulhawaii.org with all previous posts below it. Enjoy!
I woke up this morning feeling overwhelmed, thinking how can I handle everything that I have to do plus whatever gets added as a result of the upcoming cancer colon surgery. Let me share the types of things I need to do daily to maintain the best quality of life for myself. Here’s a list –
- when I first awaken I need to take a caffeine energy drink, 3 grams of salt tablets & midodrine to raise my low blood pressure. In order to crush any of the pills I use (tablet or capsule), I use a coffee grinder which does the trick. I transfer the ground pills to a shot glass, add water, stir and it’s ready.
- also in the morning I take synthroid for thyroid damage, guaifenisen for lung congestion, iron supplement for anemia, & duracef for my lifetime for a bone infection in my collar bone.
- I then remove the overnight cannula I use and debride (or clean out) inside the trach opening with alligator forceps which takes up to an hour. To see what I’m doing I use a light around my neck with a mirror sitting on a box with a box of tissues & 6″ q-tips.
- I then each day insert a new speaking valve which has an HME (a humidifing insert)into the daytime trach button & insert all of it into my trach opening. This allows me to talk in a whisper handsfree.
- I then get my 32 oz blended breakfast meal from the fridge which has been delivered by the personal chef. I also take 16 oz of water. All of it is put through the mic-key button in my stomach by connecting an extension tube. I fill up four 2 oz syringes at a time. To “eat” all food & water it takes doing this 12 times. It takes about 20 minutes. At the hotel here Nalani has been filling the syringes which is a big help and saves repetition on my only hand.
- then I wash my syringes, extension tube and containers to be ready to be used for the next meal in 5 hours. Nalani has been helping a lot with that but I told her I want to do it as I am able.
- two things happen throughout the day, one much more frequent than the other. About every 5-15 minutes I generate saliva in my mouth/throat above the trach which I cannot swallow. So I must use a portable suction machine as often as I need to get it out of my mouth. I find talking generates even more saliva & causes me to use the suction more often.
- the other thing is phlegm from my lungs comes up and can only come out the trach opening. This happens about every two hours. When it does I have to remove the speaking valve & cough into a tissue. Quite often I also will have to use long q-tips to get it all out. Being in Phoenix is not the best for a trach because of dryness. You as a normal person swallow your phlegm without being aware of it.
- some of the time I have coughing spells because the phlegm is trying to get out my throat or the saliva wants to go down into the trach area. It’s a juggling act! Sign me up for the circus!
- until recently I had to put on compression socks after first getting up, for low blood pressure. We’re talking BP in the 90/50 range standing. When I got here to Mayo they changed me to a stronger compression stocking. If you have ever used compression stockings you know how hard they are to put on with two hands. Imagine doing it with one hand! Actually there’s a donut device with a pole someone invented that works pretty well for us one handers. Since I have added 10 grams/day of salt and increased the midodrine. my BP has been better without using the stockings. I hope it stays that way.
- every day I have to take at least one nap and sometimes several due to fatigue
- lunch and dinner meals are done 5 hours apart repeating the pill grinding, mixing, syringes, etc.
- twice a day I use a nasal steroid spray for post nasal drip
- at least once a day I have to empty the suction machine container of the liquid. a separate container of water is kept full sitting by it so the suction tubing stays clear.
- ever since the trach was placed, I have a low grade fever of 98.9-99.9 every day. It usually starts late afternoon and is back to normal by the time I go to sleep. Doctors are not worried about it unless it gets over 100.4 and stays there. At first I took liquid Tylenol for it but now I just let it be.
- throughout the day I have painful spasms in my left shoulder. Sometimes it persists and I take pain medication.
- because of the right hand and arm getting overused, I developed numbness & tingling in my right hand. Doc thinks it might be carpal tunnel. Now I wear a carpal tunnel brace on it when I sleep.
- Before I’m ready for sleep, I remove the daytime trach button and clean out inside the trach again repeating the morning routine for about an hour. Before putting in the night time cannula, I use a warm gauze pad to clean around the opening. I put the alligator forceps in hydrogen peroxide to keep them free of germs.
- through a breathing test we discovered my oxygen is dropping 40% of the time below 90 while sleeping. So I’m now back on oxygen at night. And because it’s so dry here in Phoenix I have to use a humidifier at night to keep things moist inside the trach, otherwise it can get pretty nasty. Luckily a friend at Mayo has lent me an Airvo, which combines oxygen & humidification in one machine. It works great! Daily I need to fill the chamber with distilled water. I use my own portable oxygen concentrator for the oxygen. I place a trach mask over my opening & I’m ready for sleep.
- during the night I awake at least 4 times, about every two hours, to urinate. I disconnect the humidifier hose to be free of tubing. Each time I also need to remove the cannula and cough up phlegm because of the extra humidity. Fortunately I am able to go back to sleep easily.
- then I wake up in the morning and do it all over again.
Of course in addition I’m doing all the things we all normally do. Showering(I have to place a shower collar over the trach opening), shaving, brushing teeth, exercising when I’m up to it, doctor’s visits, social and entertainment activities, managing Mindful Hawaii website, doing things for Nalani, etc., etc.
When I woke this morning, like I said, I was feeling overwhelmed. Adding a major surgery and recovery process is going to pose some challenges. I tell you all of this just to give you a picture of my day. Those of you who know me know I do it all with joy and humor because I know all of these things don’t prevent me from living life fully with connection to myself and others.
So how did I deal with the overwhelm today? One thing at a time. And each one thing is done with a mindful purpose to get the best result so I can go about my day or night. Remembering to breathe, noticing the breath, and letting go I’m doing often throughout the day. If I have overwhelming thoughts, I remember they are temporary. I focus on what I need to do physically, mentally I accept whatever comes with kindness & compassion, and spiritually I know I am truly blessed to be alive and thriving and connecting and loving.
Namaste