I have been feeling discouraged about still needing to use supplemental oxygen, the slow rate of progress (I'm using oxygen at night and need 4-6L/minute on walks), and my inability to travel or make travel plans without a portable oxygen concentrator. On Tuesday I called the oxygen company again to find out the status of my order. My pulmonologist sent the original prescription on September 9, and I wrote in my last post about the maddening process of getting it approved. Since I'd initially been told it could take 6-8 weeks to get one, I was expecting them to say it would take that much longer.
Well, I received shockingly good news: it has been approved and will be delivered next Wednesday!!! My co-pay will be $3 (it costs ~$2400 without insurance). Here is my new baby:
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| Apparently I will have to start playing bocce ball after I get my portable (thankfully, we have a set). |
The concentrator will weigh just 5-6 lbs. depending on the battery type. The downside is it only delivers a max of 1L/minute, which is less than what I need for walking outside, doing errands, etc. When I realized this, I was overcome by a wave of disappointment. I thought once I had a portable I wouldn't need to lug oxygen tanks anymore, but I was wrong. It could be weeks or months before I can walk around on just 1L. However, now I can go on overnight trips within a short driving distance (e.g., Pittsburgh, Philadelphia, DC). I can use the portable at night and oxygen tanks when I am walking around.
I have always been an even-keel person. As I once told a friend, "I don't get into spaces." (In my early 20s, I showed up at work for a Saturday event, the morning after a fire destroyed my friend's and my apartment in Chicago.) But life with cancer + pulmonary embolisms is a daily emotional roller coaster. In particular, I am grieving the loss of my identity as an athlete and fit person--not to mention the ability to exist, walk, and go about my daily life without feeling short of breath. I have many moments where I still can't believe that cancer, pulmonary embolisms, and the accompanying physical limitations are my new reality. I see someone biking down the street or read friends' Facebook posts about going on a hike and I feel sad that I can't do these things that I once took for granted. The portable concentrator will certainly make my life more convenient and increase my mobility, but it won't restore my identity or reverse my limitations.
Hi Esther, I was just thinking about you. I'm so sorry to hear about your identity struggles in addition to everything else that you are winning against right now. I do have faith that your new device will help in restoring some of your freedoms and sense of self. I'll pray in this. Step by step.
ReplyDeleteThank you, Nicky.
DeleteI can imagine the sea-change this has been in self-concept. Continuing to pray for healing. Eric N.
ReplyDeleteThank you, Eric.
DeleteI cannot wait for you to kick my ass in bocce ball!
ReplyDeleteSorry, this is Anna :) I didn’t realize it was anonymous ❤️
DeleteAnna P or Anna K-M? Either way, I will put up a good fight. I could maybe even do this without oxygen if someone else retrieves the balls for me!
DeleteI look forward to cheering your award as bocce ball champ this year :-)
DeleteEsther, Thank you for honestly expressing your frustration with the new reality of so many inconvenient limitations. I pray that the new normal of using oxygen tanks will be temporary and you will be able to return to the more active life you enjoyed in the past. Courage. Peace. Laura
DeleteThank you, Dolores.
ReplyDeleteEstheration none of us can imagine how difficult this is. Please find comfort in knowing that many of us have never stopped praying & we think of you everyday, not a day goes by. You are not alone. God loves you & I know He has great plans fir you. Be restored in His name. Love & hugs
ReplyDeleteThank you, Alisa!
DeleteThank you for sharing your situation with us! It is an emotional struggle knowing that you lost something that you enjoy so much. At the same time, it is good to still be able to go outside, to enjoy the sunshine and fresh air. There are many beautiful things in life that we might not be able to notice before due to our busy life or our being occupied by our old habits, and now it might be a good time to explore something new that we may fall in love with. I wish you enjoy your day every day, even though some days might be harder than other days. Bo
ReplyDeleteThank you, Bo. It has been a beautiful fall here, so I've enjoyed the trees and colors.
DeleteDear Esther--Rejoicing with you in the new portable!! And laughing out loud at your bocce ball comment. Mourning with you in the losses that come with such a life-changing diagnosis. Appreciate you being real, friend. Hugs & love from Maryland
ReplyDeleteI think we will have to play bocce ball when you come visit!
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