So I know this is Chris’ forum to write about me, us, our adventure and really just a cathartic space for him to get things off his chest. But, I wanted to post to tell you all about the most amazing day of healing I have had. I meant to put this up a few days ago so it already feels stale writing but here goes.
As you know we went to MD last Friday and received grim news. And the skies were gray as if to punctuate the seriousness of it all. Blah! It sucked. But I am by no means ready to give up. They gave us two options. One would be just let Hospice keep me comfortable and visit with friends. The other was that I could go back on the very first drug combo that I took when this whole mess started in January 2007. They said things like “long shot” and “unlikely” “usually does not work”…. but “sometimes”. Well, I’ll take the sometime – anytime.
So, the doc at MD was supposed to call and talk to Dr. Loukas to set up the chemo for Monday. Of course he never called Dr. Loukas or never reached him or whatever. But that’s neither here nor there. We were planning on showing up at the Spa on Monday morning for treatment.
We are all for a shotgun approach to this cure. I don’t care who gives it to us or who gets the credit, just get me well!
MD sent us home with some heavy duty antibiotics and something else to keep them from allowing fungus to grow inside…gross. I started taking those. I think they began quickly in getting rid of some of the phlegm in my lungs.
Then Sunday night I was feeling very scared about starting chemo. Chris really would have preferred that I take the easier route without the chemo for fear of losing precious days we still have together. But he was and is here to support my decision going the opposite direction. There is a little of disconnect though because he remembers how horrible that combo of drugs was when I first started it. I was in terrible shape and getting these horrific drugs was just a mega compound. What I remember is that I took that combo for almost 11 months and by the end I was tolerating pretty well. It’s no walk in the park folks but also does not steal five days from life recouping. We had a really long talk and decided it was just not a risk that we could afford ‘not’ to take. Shotgun, remember.
I also have been going to see an acupuncturist for about two weeks and he has been sticking me with needles and gave me some Chinese herbs and tea to take. It is a strange sensation being pricked by those needles. He feels around and hits the spot, which does not hurt (small needles) and there is the shock or sensation that travels up your body in line with the needle. I don’t really know what it is doing but I glad I can feel ‘something’. Today he put needles in my back and I could feel the point come out my front. Not literally but the sensation travels all the way through. On a side note his is a really funny guy, has been doing acupuncture for about 30 years and I think really has an inferiority complex when it comes to Western medicine. He believes he can cure cancer and I believe him, or at the very least I hope he can take a good pot shot at it. Each time I talk with him one of his concerns is that I will start doing this Eastern med thing and find out I am eligible for something Western and drop him like a hot potato. Or worse, that we will not be able to tell which medicine has cured me! DOC!! I don’t care who cures me, just get me a freaking cure. Our last chat about that one hopefully has quieted his tongue about the need for delineation.
Ok, so back to Sunday night… the decision we had come to, moving forward with chemo, doesn’t mean we were not both scared of the day ahead. We went to bed but a fitful sleep was all Chris could muster and I could not sleep. Not at all. I spent the entire night praying to God and asking him to remove all the disease from my body. Praying that He would do it in any way saw fit. He could dry the tumors up and just let them re-assimilate into my lung. He could allow me to cough them up and spit them out. Or cough them up and let me swallow the tumors, I am happy to digest them with any food substance or all by themselves. I asked Him to rid my liver of the tumors there. The liver can regenerate itself for Pete’s sake, just put all the bad into my body’s evacuation system, which is standing by ready to flush out all the toxins and tumors. I spent several hours imagining a yellow ball of light that was flowing into my body, into my lungs, into my liver and spreading healing. I also spent a lot of time hacking up phlegm from my lungs, and I know I was getting cancer with it. I just need to get it all! Then I chanted “kill the tumors, kill the cancer” for an amazingly long time. You would be amazed how much ground you can cover when you stay up all night.
Morning came Monday and we called the Spa…. they had received no word of our impending arrival and needed to get insurance approval and work me into the infusion room schedule. Uh! I hate waiting. But I think it actually was a good thing, I was very anxious and nervous from my evening and it was good to just sit around a while and calm down. They finally let us come down at 2pm. They set me up in my chair and after all the preliminary pre-meds and stuff they started to run the juice. I could feel it working immediately! I really could. The drug being administered is called CPT-11and it gives you a tingling sensation in you tongue and lips. I began to feel that and I laid there imagining the yellow ball. Entering with each breath, spreading though my body, my limbs… cleansing my organs, killing the cancer. I also did some silent chanting and killing the cancer and I talked to God about getting the show on the road. I have a good friend who says God is waiting. Waiting until this is so bad that when I am cured, the only explanation can be that it was a miracle and God’s will. Well I feel like we are getting pretty close here and I am willing to give credit to anyone and everyone who wants it. God, please just let everyone get a little credit and we can get this thing sorted out. As the CPT enters my body it really fills me with liquid and I have to go to the bathroom a lot. I reminded God to put all this tumor waste in my bladder and let me rid myself of it. By the end of the infusion (it takes several hours), I could actually feel more room in my lungs. Truthfully. I can take deeper breaths without the same obstructions.
We went home while Chris’ mom went to the pharmacy to pick up the second drug in my one-two punch. This one is called Xeloda, it comes in pill form but don’t let the deceive you; it is chemo therapy. I have to take eight horse pills a day for two weeks. There are some unpleasant side effects but I really don’t suffer them often. I have some level of better tolerance for the drug then a lot of other cancer patients I’ve talked to. We had forgotten, though that our wonderful insurance had changed the ‘schedule’ of Xeloda in one of their last updates to my policy (but not to Chris’) and the drug is now only covered 20% and will never apply to our deductibles or out-of-pockets or whatevers… $575.00 co-pay! Ridiculous. My first response was ‘forget it’! I got the CPT-11 and we will just see what that does. Chris, with a little better head on his shoulders, thought we should go ahead and get the meds, no point in backing out halfway. If he had this pricing argument Sunday night we might not have gone the chemo route. It is just such a racket and I really feel badly for people who can not make the decision to have the drug even if they want it.
Monday, we were home for the evening and ordered pizza. Chris’ mom, Lori, Brooke, and Jolie all came over to eat and hang out. I ate a normal dinner serving which I was really pleased about because I had been having low appetite problems. (It’s a scary thing to recognize that you are not eating and not really hungry.) I sat all evening in my leather chair with the oxygen tank but really not having problems breathing.
The girls brought with them a striking and beautiful prayer that Tracey had written for me and we all had a little cry. I was actually feeling pretty good and wasn’t feeling the same bloat that I usually feel after receiving bags and bags of chemo liquid. We chatted and had a pretty regular evening.
Over the last week a faith healer’s name has come up in three different conversations with three different people – Francis the Healer. I’d asked Leslee earlier in the day to the check him out and see what she thought of him and determine if I should go. Serendipitously, there was a conference of faith healers that very night in North Austin. Normally the faith healers get together and work on their trade alone but on this night there were over 100 of them gathered together in a church in North Austin. Leslee found that for this particular night, they met privately and, when they were done, one of them comes out the parking lot and invites the sick and infirm inside for some free healing. I think there were eight of us waiting in the parking lot. Inside, they had a line of chairs down the center isle and we each took a seat.
They asked our names but didn’t ask why we were there or what sort of healing was needed. Then Francis the Healer called out names of different people from the audience and had them come over to each of us in the chairs. He surrounded each of us with three healers, and then asked the rest of the group to stand and gather around.
We sat there in silence for about 15 minutes while the healers used their energies and focus and what ever power they might have to heal our bodies. It was really hot in the room. Hot air makes it more difficult for me to breath but I did not take my oxygen with me because it’s kind of loud and I didn’t want to cause a distraction. Unfortunately, Chris was too far away for me to get the oxygen when I decided I would rather have it than not. It was as struggle not to cough.
Everyone was absolutely silent. The healers laid their hands on me in different ways. I could feel the heat coming through their fingers.
Amazingly, I was able to keep it together the whole time and did not have a single coughing fit. We rose and left as silently as we came. They closed the door to continue their meeting and Chris and I went off into the night. As soon as we were out of that place, I started having a phenomenal coughing fit. I really hoped to believe that that was some of the cancer being purged from my body as I hacked and coughed like a fur-filled ol’ cat.
Later that night, I did take a bath to get some of that nice weightless feeling that makes my tummy feel better. Nurse Jolie told me to take a lorazapam and an Ambien so that I would get a good night sleep. I took them both and did not get up a single time Monday night. I can not remember the last full night sleep I have had. It has definitely been a long time.
Tuesday morning Martha took me in for another acupuncture treatment; I want to keep all the guns blazing. That afternoon, my hospice nurse and chaplain both came by for a chat. A good friend of mine, Deena, who is struggling with this same fight came to bring me sunflowers. Deena is an amazing inspiration to me through this battle because she has been doing it longer and has had some heavy setbacks. I hope to follow her example and get past this crappy setback ASAP. That evening Florencia and Katy came over to cook us dinner and hang out. It is always nice to see their beautiful shining faces and to feel their positive energy.
It is crazy how quickly the days are flying by. Wednesday was the Art Show. So many of our friends worked so hard on getting this together I am reluctant to name names because I don’t want to leave anyone out. But I have to mention Denise, Florencia and Leslee. You guys worked your tail off and the show was an amazing, phenomenal success. I am also very thankful for the other artists who contributed their works to the show, everything was beautiful. I promise Chris will get some pictures up soon so you can all see how it went. I sold all but one painting of mine (besides the holdbacks that we are keeping for our house). Unbelievable.
I slept most of the day Wednesday to make sure I would have the stamina to make it through and although it was a little difficult at times I was fine. And I didn’t use my oxygen at all. I know I can do it, and I want to work my lungs but this breathing thing is getting harder even though I feel my lungs are clearer!
My biggest problem right now is anxiety or panic attacks. Something. I am really not the freak out type, never have been. I am the keep-calm-we-will-figure-it-out-in-a-minute type of girl. So I keep having conversations with myself about the issue and I am struggling. I can sit without oxygen for many, many hours. I can sit in a chair or on the bed and keep conversation without needing any assistance. But when I get up and have to walk somewhere, even a short distance, but particularly upstairs I have a very, very difficult time catching my breath. I get to where I am going, sit back down again, with or without the oxygen and it takes me time to settle myself into normal breathing. I know a lot of it is in my head because sometimes I can regulate very quickly and others not so much. I can’t seem to just convince myself to calm down.
I have absolute faith that we will be looking back on these days in the months and years to come just as we look back on the hard days in the months and years past dealing with this cancer. I’m so thankful for all of your prayers. I know that they are helping me to get better. I also want thank my beautiful loving husband. There’s not a day that I could have gone through without him. We still have a lot more adventure to go. This is not the end.