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!
