Today was a very hard day, quite the ordeal. I was sick, emotional, mean and cranky. And Mike was with me the whole way, smoothing, soothing, focusing, and centering. What a guy! I love you, Mike!
I've been crashed since January with no energy to post a blog entry, hence folks are wondering what's been happening with me. My last postings were so upbeat and positive; I was waiting for the same energy to return before I posted again. But I've found that that energy doesn't stay here long enough for me to get focused enough to write, so I'm posting anyway, upbeat or not.
I had great energy through December and traveled back to Richmond for a week at Christmas with Mike. We stayed with my sister Janet's family (Janet Beck Thoroman and Jim, Carrie and Anna Thoroman) and then with Jean and Tom Washburn (my stepmother and her husband). I had phenomenal energy the whole time and kept up a steady pace of visiting with family and reconnecting with old friends. It was the best trip I've had in a very long time.
Then after a few days home I crashed and have not recovered since. I'm accustomed to overdoing it at Christmas and then being low in January and gradually regaining my strength, but this was worse. Then I started spiking fevers. (the fevers were kinda fun at first because my body has not been able to make a fever for years; I've always had very low temperatures.) The blood cultures showed a bacterial infection. My IPT doc said it was something she'd seen several times before in patients with PICC lines and it was not serious and we could address it gently. The conventional medical folks at the infusion center where I get my Vitamin C infusions were all in a panic and said I was septic and demanded I go to the ER, get admitted to the hospital and get on high dose IV antibiotics. When I refused their orders, I was dismissed. (I'm such a bad patient.)
So from the beginning of February I was without my three times a week 125 grams of Vitamin C infusions. And I had a blood infection, probably in my PICC line. And I was weak and lethargic. Chronic fatigue syndrome revisited. And I started a new chemo drug combo with my IPT. The last CT scan had shown the tumors and lymph nodes were stable. We'd done the genetic testing to determine what chemo drugs were best suited for my cancer and so we changed drugs to get better results.
The new drugs were hard on me, especially one. My blood counts decreased gradually and I got weaker and weaker and I was still having fevers. We tried several natural treatments for the bacterial infection but the cultures kept coming back positive. So we did oral antibiotics, still positive blood culture. Then a course of mild IV antibiotics, still positive culture. In the meantime, I'm feeling really lousy from the chemo drugs (IPT only uses a fraction of the standard chemo dose and most people tolerate it well but I am a sensitive weenie with long history of chronic fatigue syndrome and an already weak immune system so I'm not like most people.)
After 9 treatments with the new chemo drugs we got a CT scan that showed definite shrinkage. But by then I was so weak I begged to stop the harshest one so we switched to another one that had shown high sensitivity to my cancer on the genetic test. By then I was doing home infusions of a more powerful antibiotic to wipe out the blood infection. And yes, all this made me feel even more weak and drained. But I could have felt worse...My IPT doc had been giving me high nutrient infusions with lots of vitamins, minerals, antioxidants, amino acids and lots more good stuff to boost me and keep me strong and to balance out the harshness of the chemo and the antibiotics. She works hard to figure out what is going on with me and tries to tailor the treatments to address my weaknesses. I'm quite the complicated case for her and she sticks right with me through it all, never giving up and always problem solving and seeing what works and what doesn't work. Like iron infusions, Yay! they helped alot.
So presently, I finally got back into the infusion center on April 19th after getting a negative blood culture. I'm getting 50 grams of Vitamin C three times a week and working back up to the high dose gradually. The newest chemo drug has turned out to be harder on me than the last one and I've lost some hair, I've gotten very very sensitive to chemicals, and I react to just about everything in the environment. I'm wearing a mask a lot when I am around people or outside because I get sick from synthetic fragrances, exhaust fumes, and now I think I've developed hay fever. I've been sick for a week with what I thought was a cold but it may just be seasonal allergies. All I know is I've been running a low grade fever at times, I'm runny and stuffy, I'm sleeping all day, and I feel like shit.
Back to today, it was an ordeal. I'm tired of feeling tired. I was doing fine on just the Vitamin C infusions and they were strengthening me. The IPT was tolerable until I got the blood infection and the Vitamin C infusions were stopped. The infection and lack of Vitamin C had nothing to do with the IPT; it was just bad timing and a combination of weird circumstances. Today I was mad and upset and frustrated with all of it. I was ready to quit IPT. It makes no sense to me to continue to weaken my body just to kill cancer cells. A strong body, fortified with what it needs and detoxed of what it doesn't need will stop making cancer, as I see it. Feeling lousy, weak, sickly, mad and frustrated doesn't help to stop cancer; it all probably adds to it.
So, today we agreed to cut back to once weekly IPT treatments without the latest harsh chemo drug. It was on board for 8 treatments which is a standard IPT course. We are going to wait a month or so to get another CT scan (don't need the radiation too often, ya know). And the tumor marker blood tests are showing decrease so that is good. The IPT treatments are working, we know that.
I'm tired of focusing on cancer. I talk about it too much lately. There was a time I wouldn't say the word, hah! Now it seems to be in every conversation. Sometimes it comes in handy and I've learned to play the cancer card when appropriate, like when we went to Virginia, it helped to make that happen.
But I do not think about dying, never have. I don't think that is what this is about. This cancer journey for me is about learning to listen to my own knowing and staying centered in that knowing. The rest of it is just information to be considered and kept or thrown out.
It's also about love and feeling the care and compassion of those around me and being astounded daily at the power of love to meet the challenges of this crazy cancer bump in the road. The power of love to push through and around and up and down and over that bump in the road. And it's just a bump.
All that said, here are a few fun pix of me at age 16 back in Richmond, Va taken by my old friend John Moser. He gave them to me when we were there at Christmas and they make me smile every time I look at them. Enjoy!
And thanks for all the love! Back at ya!
As always, thanks for the support and love and please do not worry about me. No agendas, no advice, no fear, no panic, no horror stories of other folks who've had cancer, please just send love; my body knows what to do with it.
ReplyDeleteLove and hugs,
Sarah
Sarah: I love and think about you often. The years have not changed the emotional connections I have in my heart. Love Matthew DeCuypere
DeleteSarah, I appreciate your adding me to your blog.
ReplyDeleteThe Moser photos made me smile as well, thank you.
Love,
Tom
Thanks, Tom.
DeleteRemember when I was young and cute like that?
Seems like only yesterday.
Sarah,
ReplyDeleteI tried to call you yesterday but got a message that you have not yet set up voice mail---so I was glad to hear from you today via this email! I am sending you love, love, love. You are the coolest!
Mary
Hi Mary,
DeleteWe don't use that cell phone very much.
I'll email my land line number to you.
Thanks for the love!
Okay, that post above is from Mary Corrado. It shows as anonymous but now you know!
ReplyDeleteAnd the photos are delightful!
I hope today is a very good day.
I'm ready for some good days!
DeleteYay!
Thanks for sharing Sarah ~ you've been in my thoughts a good deal lately, lovingly I might add... you're an inspiration.
ReplyDeleteSending and holding you in abundant love ~
Page
Thanks for including me, Sarah. I know when you are tired and frustrated life itself can be hard. A couple of suggestions, which you may already know: Anita Moorjani's book, "dying to be me" and Kris Carrs book on juicing/diet. Both are inspiring and phenomenal. They fit right in with your beliefs about the body knowing how to heal itself.
ReplyDeletexox
Thanks, Winter.
DeleteI tend to avoid books with "dying" in the title, :-)
I am aware of Kris Carr's work, but most of the cancer writings I encounter are folks processing stuff that I did a long time ago. Hence my focus on listening to my own knowing and avoiding other people's beliefs.
I appreciate your love and support.
Love and hugs to you.
Good Morning Sarah,
ReplyDeleteJust keep that positive attitude going, and please keep on fighting. I loved seeing you in December and so happy that we have re-connected after all these years.
I send my love to you and Mike,
Mary Ann
Good morning, Mary Ann!
DeleteI loved seeing you and Kitten in Richmond. What a fun surprise. I still need to find that pic of all of us in our cheerleading uniforms.
Lotsa love back at ya!
Love these pictures of you, Sarah! Bob and I are hoping to have you guys over for supper soon. Let us know if there is a day that is good! Jeanne Pahls
ReplyDeleteMight have to be a weekend, Jeanne, and we know how busy your weekends are with demos and events!
DeleteI'm hoping though, that cutting back on IPT treatments will help me to feel more like socializing again.
Maybe we can plan a short dog party at the soccer field soon. Wiley needs it, as do I! I walked up there one night last week and realized it was the first time I'd walked there since the dog park calamity that started this whole adventure.
Love to you and Bob
I love that coat you had back then. I had one like it! You are a toughy, Sarah.
ReplyDeleteThinking of you a lot! I wish I been able to go to Richmond at Christmas to see you (and everyone else too!).
ReplyDeletePete Barbernitz
Great to hear from you again, Sarah. I was worried you were suffering more and . . . whatdoyaknow, it was true. I know, it's just suffering but I wish you didn't have to do it :-)Glad you are listening and paying attention to the good stuff. Mike sure sounds like GOOD STUFF!!!Thanks for being there for my good friend, Mike!
ReplyDeleteLots and Lots of love to you both from the northern reaches of Viginia. The Spring here is still as beautiful as it ever was when you graced Richmond with your presence. I think the joy in those photos still reverberates here in the East. Sending you the beauty of azaleas and the healing scent of lilacs!
Dan (of the Gemini babble)
You're welcome, Dan! As you know, she's worth it and a whole lot more.
DeleteMike.
Hi Sarah
ReplyDeleteI am so sad to hear you have been feeling so low. I see better times in your future, and you will be stronger than ever.
Mike, thanks for taking care of my friend.
May Jehovah bless you and keep you.
May Jehovah make his face shine toward you, and may he favor you.
May Jehovah lift up his face toward you and assign peace to you.
Numbers 6:24-26
Love, Robin
My dear cousin Sarah!
ReplyDeleteSo good to hear from you....I have been wondering about you, but I love being "in the loop." Most of your male ancestors on your mother's side were/are low on the hair on top category, so I hope this ordeal does not make you look like one of us....Anyway, I'm thinking of you back here in VA ("where the crik don't rise") and wishing you all the love and hugs we have here!
V
Dear Sarah, I'm so happy to get your updates! My heart and mind are with you as you experience these challenges. I know you will continue this journey with the same beauty, strength and optimism that I know you to BE. <3 Oh, I LOVE the pictures!! Such a beautiful, Amazing woman, already, at just 16!! They so reflect your Bright Light that you ARE!! This is an affirmation I've been using lately that seems to put me in a more positive frame.... "MY PERFECT___ (fill in the blank) is HERE NOW and ALL AROUND ME!! (e.g. Health, Body, Cells, Vitality,Love, Prosperity, Abundance, Joy, Harmony, Bliss, Freedom, Home, Magic, Connection,....I Am Limitless Freedom & My Whole Life Reflects That." <3 <3 <3 LOVE to YOU, my friend <3
ReplyDeleteDear Sarah, I'm so glad we were able to get together when you were in Richmond. It's hard to imagine that you have been having such a struggle; you were doing so wonderfully then. I'm sure you will be on the upswing with the coming of spring. I very much enjoy our bit of sharing on fb. It gives me a sense of connection with you that I value very much.
ReplyDeleteLove,
Cheryl
Dear Sarah,
ReplyDeleteYou and Mike are in our thoughts. I always think of you as remarkable, strong, creative, intelligent in so many ways, expanded over the years that I've known you. I loved the pictures. They are so Sarah!
Love that never ends beaming your way.
Ana and Slava
Dear Sarah,
ReplyDelete[Hi, Mike!]
I'm so glad you felt good enough to write this post. Although things have been tough, the post sounds like you, the vibrant Sarah we know and love. I'm grateful for these reports as you progress on your "journey". May you stay centered in your knowing.
Love,
Jim
Sarah -
ReplyDeleteI was so very surprised to get your email and amazed after reading your blog. What spirit you have found to guide you through all this, it is amazing.
Please add my name to the list of us sending you our strength and love.
You are right that your body knows what to do. How often I forget to pay such close attention as you must do.
You are an inspiration to me.
live your love.
liz walter
Dear Sarah,
ReplyDeleteWhile we just talked last week and I had the chance to catch up, I'm happy to read your blog and the comments of your many friends. You are truly loved, dear one. I miss seeing you and being with you--wish there weren't so many miles between NM and VA. You are always in my thoughts and prayers. Mike is always there with you at those times too. May your energy and strength continue to return with the Vitamin C treatments. I love you and Mike very much.
Jean
Thanks, Sarah, for taking the time and energy to tell us what has been happening for you. I send you love and hugs in this moment.
ReplyDeleteTerry
You still look 16 to me.
ReplyDeleteWow, Sarah I don't know how to respond to all the chemo and cancer stuff.
I trust you will see your way through it and come out the other side stronger than before.
We need to show Mike some support too for his help in all this.
Wiley too.
Glad you are strong enough to write all this, keep it going.
Bob/Jeanne/Bailey/Sam