I’m improving. It’s been a perfectly awful couple of weeks, but I’m improving. Day by day, I claim the smallest accomplishments as I claw myself back to health, or some reasonable facsimile thereof, after spending several days last week in the hospital with pneumonia, preceded by chemo Thursday and oxycontin withdrawal Friday and Saturday as I switched to a different drug. I went to the ER on Sunday night with trouble breathing, and they admitted me due to that, plus low blood pressure, low O2 rate, and junk in my chest that later led to a diagnosis of pneumonia. The doctors watched me closely to catch any sign of sepsis early (there was none!), and, on the whole (meaning except for 1 nurse and 2 technicians), they treated me well. I left the hospital on Wednesday, and, luckily, I didn’t have to go back to the ER all week.
The first day home, I slept, connected all day and night to the oxygen tubes that the hospital sent on ahead and the technicians had to explain to my parents, at home with the kids. The second day, I was able to be downstairs for a few hours with my children, sitting in the lovely chair that Kimberly, a fellow breast cancer survivor and friend of Elaine’s, gave me the week before to soothe my pains as I waited for the new medications to kick in. Sitting in that chair has been perfectly wonderful, as it is heavily cushioned and has one of those automatic controls that positions me comfortably and helps me get up when I’m ready to go upstairs. It’s also plushy, distracting from my portable oxygen container alongside. The third day, I was able to disconnect the oxygen for about half the day, which made me feel more confident being around the kids. They were perfectly wonderful, of course, accepting it with a minimum of curiosity and no fear, but I hated them to see me on oxygen in our home. Before that, we went to my primary care doctor for a check-in, and he pronounced me *much* better than expected based on what I’d been through. Hurrah!
The fourth day, I continued to work on several crossword puzzles and Sudoku, desperate to fight off chemobrain, but not ready yet to blog, and I struggled through the whole day awake and downstairs. We put up the Christmas tree as a family and strung the lights. We’re a little behind on our Jesse Tree / Family Advent time, but we are doing it as we can, and if that means we color the pictures or read the Old Testament stories in the middle of the day instead of after dinner (my original plan! ha!), then that’s just fine. Jess brought me communion again that day, and the whole family participated in the prayers. Jess and I cried together over the loss of our good friend, Judy, who lost her battle just hours after being admitted to hospice Friday night. I admit, I pouted much of the day. It’s just not fair — cancer always wins — and I hate the battle metaphor now, as the truth is that we women who are diagnosed with metastatic cancer are fighting for every day of our life — and there is no way for us to “win” such a battle, no matter how hard we try and no matter what we do. Once you are metastatic, until we find a cure, cancer will win every. single. time.
(Deep breath and new news – did I tell you about the study announced earlier this month? New research shows that 15 of 17 IBC patients overexpress some protein — and if we can now find the drug that hits that protein, THERE IS HOPE that we may shut it down entirely. This is big science and big hope. Especially for me – I was one of the 17 women who donated her tissues for that study! Those are MY CELLS they studied! I am full of hope, when I remember this – it’s just a matter now of the doctors finding the right drugs, and making it through the layers of trials to Level IV. Fast.)
On the fifth day, I gave up the oxygen for good, except when I was too out of breath after coming upstairs — but I did come upstairs as I needed to, which was major, after several days stuck in the chair or with my portable oxygen canister. We decorated the Christmas tree, reminiscing about my childhood ornaments and my husband’s, and the lovely little ones for the children. I sat in the chair again, ’tis true, but I sat all day and it was a victory.
Monday was hard again, as I wasn’t “all better,” and I wanted to be, but today is Tuesday and I’ve been able to sit and work much of the day – just email, and blog posts, and catching up on the bills, but I’m happy, because it’s progress. I pray that my progress continue and that I recover from pneumonia right on schedule this weekend. I go to chemo on Thursday, which will help my overall health outlook, but it will still be tough layered on top of this illness.
My friends are holding a novena for healing tonight and through this week, for me, for a sweet little girl who has cancer well before her time, and for other members of our church who are sick at this time of year. I only learned of it on Sunday, but I am hopeful that their prayers added to mine and yours will bring me strength and peace. I want to live so much. So much.
God bless you and your family.
That is really exciting news about the research. Do you have a link you could forward to me? I would love to pass it onto Kevin and Howard.
I will see you soon. That, my friend, is a promise.
Sending much love and strength.
So nice to hear from you, and to hear that you’re doing better. Thank you for using some of that precious energy to let us know. You will continue to be in my thoughts and prayers, Susan.
So super cool about the research!! Give us details when you can. And the prayers roll in… xo
Good to hear from you about your progress. Hugs and love…
Yay! That’s all I can say–yay!
And I want you to Sister, I and so many others want you to live. Praying, hoping, believing.
It’s great that your cells are in the trial – it gives you a little power over something that, as you say here, usually wins. Typical of you to think of that — just like the princess fundraising.
I’m so glad for the prayers and will include you in mine… They’re Jewish ones, but talk to the same being so I’m sure they’ll be useful. I think of you so often as we sit here in London awaiting the birth of our first grandson. I know that each landmark you reach is a victory and pray that you will have many more, aware of how remarkable each one is and glad for every one you reach.
“Slowly improving” – what wonderful words to see in my inbox. Like so many people, I think of you so often and look for your messages. My thoughts – meditations – (not really prayers as many define that word) are for you to have what you pray for: strength and peace, and most of all, life.
This is better news than I had anticipated. I’m feeling very gun-shy after Judy. I had no idea your very own cells were in that study! Did they give you your results? Are you one of the 15 or one of the 2?
“slowing improving” is still improving! I pray that you continue to improve and have a lovely Christmas season with your family.
I’m am so happy to see you “up & around”. I had tears in my eyes when you said hello on gtalk! I hope to see you much more often! Sending lots of emotional hugs and hopes for a MUCH better new year for you and your family.
And I want you to live too. That’s great news about the research but I’m even happier that you are feeling better, my friend! Looking forward to seeing you soon!
Rock on, Susan. Hope the days continue to bring more time where you’re up and around.
so glad to read your post. healing thoughts in my heart for you today, Susan.
wonderful news about the research! But I’m happier to hear you didn’t get sepsis. I know we all think cancer sucks, but in my life it’s the sepsis that seems to get people. You are such an inspiration. Thank you for continuing to share your story with us. You are in my thoughts a lot. Sometimes chocolate kicks you off the couch in my brain. love ya.
Susan, I’m so glad you’re improving. I want you to live too. I think of you often. Praying that God gives you and your family a wonderful Christmas.
Susan, I want you to live too! Keep up the fight! Glad to hear you’re feeling a bit better, and hope the progress continues!
Sending you healing thoughts and prayers, my friend! That is so, so awesome about the study!!!
I’m glad to see you’re improving. You and your family are in my thoughts and prayers. I hope you’re improving more every day.
Love to you, Susan. And fascinating news about the protein study; here’s hoping it amounts to something good very soon.
I’ll go to the online light a candle site and light one for you.
it’s so clear to me that you ARE winning. you are winning the day to day, so clearly and fiercely. another candle will be lit tonight for you in atlanta.
Sending lots of love and strength and you’re in our thoughts and prayers everyday !
We want exactly the same for you… so very, very much. Prayers, as always, and much, much love– xoxo CGF
Storming the throne of the Heavenly Father to give you many more days of feeling better, many more days to enjoy your family and many more days to inspire the rest of us to be better people. Give us all the peace that passes all understanding. Thank you for being a fighter.
I was so happy to see your blog in my email today!! Thank you for the energy and time you spend with all of us with mets. We never stop learning from you! HAPPY HOLIDAYS!
All — if you go to my blog, I’ve come out of hibernation to repost the novena prayers:
much love to all
From the chair to the research–fantastic news…but also, even more wonderful, that you are strong enough to share how you are doing. So many hugs.
Oh, Susan, that last line… we all want you to live, so much, too. Sending energy for strength and peace.
Sending love, strength & healing prayers from LA…
Susan, you are in my constant thoughts and prayers. I wish you all the strength to continue to get better.
And I love the snowflakes.
I’m so glad to read this, and yet so sorry for Judy and her family. I’m so glad you got to put up the Christmas tree at home.
So very glad to hear from you and that you are working your way back towards health following the pneumonia. The fact that your cells are part of such meaningful new research is just amazing. (Like you!) Enjoy your Christmas tree, and may you continue to gain strength. Thinking of you often.
So very happy to read this. Sending so many prayers your way. And hooray for cushy chairs!
Love you, Susan.
It’s not just that group’s prayer. You know there are so many of us out here thinking of you and your family each and every day.
I was so happy to get your message with such positive news. You are such an inspiration. Thinking of you often. Sending you love and strength.
Here’s to strength and peace. Praying you get both and more…
Thank you, thank you, thank you for sharing your struggles and your triumphs with all of us. Prayers for strength and healing and peace for you from a stranger in Oregon.
So much love, from our family to yours. We are holding you in our hearts and thinking of you every day. Keep improving!
You are always in our prayers! Sending peace, comfort and love to you.
I’ve held you tight in my heart these past days. I’ll be sending prayers and wishing for clearer days for you.
Your are so dearly loved and respected, Susan.
I also think about you all the time and pray for your continued strength. I hope you are bursting with pride for your contribution to research and that it carries you through the difficult moments, hours, and days.
That’s so cool that you could contribute to the research. You are an amazing woman. Lighting candles and saying prayers for healing and wellness for you.
we want you to live so much, too. you do it with courage and grace, and make the world better for being in it.
case in point: the research study. such hopeful news. such huge news. so cool and so like you to be a part of it. again, thank you for teaching me what research means.
Always sending good thoughts. They zip out and float away and wrap themselves around you.
You will be.
I know it.
I know how important it is for you to take back any power you can so…the info from the cell research is important in many ways! I know you’re feeling crummy. Sending you our good thoughts and willing you to move towards strength and health.