Preparing for a possible watershed moment
I am almost always awake at 3:45am. I toss and turn and think and pray until I give up about an hour later. I might get up and take care of some paperwork or something that comes to mind. Today...I am typing. If I can, I almost always want to go to sleep about 5:30. Otherwise, I just stay up and get ready for work or whatever.
This blog is something I don't feel like I control anymore. I feel exposed when people tell me they read it. Like I said to my dear friend, Mary, yesterday - I am much more honest in the blog than I generally am in person - unless people press me about what is going on. But I feel compelled to keep this as something of a journal of it all and, what good would it do to keep a dishonest journal?
The PET Scan I had done early February came back a mixed bag. Dr. Block said that, if he saw it and didn't know all that was going on with me, he'd say the lymphoma is pretty stable - although it is definitely still there. He has the Block Integrative Cancer Center outside of Chicago. I like him and I am grateful that he is there for consultation but he doesn't know T-cell Lymphoma like the specialists I've seen do - who beg me to start chemo. As one said, "The issue is in the tissue." In other words, I have it and need to deal with - regardless of how I feel, physically.
On the other hand, the PET Scan report had a sort of hidden little sentence in it that could indicate something I haven't been able to say out loud to many people this last couple weeks - especially our kids. It indicated that there MAY be metastasis to the brain and that I need an MRI to confirm or deny that. I know some people will be hurt that I didn't level with them on this. I almost didn't tell Andy or anyone but my little sister helps me figure out the medical stuff and I knew she'd see it on the report. Saying the words, metastasis to the brain, makes that possibility too real - I have pretty much avoided it.
I had the MRI a few days ago - a brain MRI is a challenging thing. I've committed to memorizing more scripture if that gives you any hint as to how hard it was. A cage over your face and an enclosed tube - it took everything I had not to panic and woke me up to the fact that I need to be mentally stronger - although I realize I did make it and that counts for something. And, yes, I am fully aware that kids go through this and people do it all the time. Some people ask for drugs to relax; I'd like to think I can learn to handle tough things - after all, none of us know what we might be called on to handle someday.
I remember when I was first diagnosed. I would tell people what was going on and I'd see such sadness in their faces - it often jolted me. I've worked pretty hard to not cause people sadness my whole life. It's been hard to deal with. When I've told the few people what is going on right now - there is a stun in their face and a moan that often comes out of them. It makes me regret telling them and it's also like I can hear them saying, "Oh boy - that's it. She's done." I remember growing up and my mom would say that people are done for once "oxygen hits their cancer during surgery." Or when it gets to their lymph nodes. Or if it's ovarian or pancreatic cancer or lung cancer - there is no hope. I fight those old "tapes" as we used to call them - but they are always there.
And then there is the reading and learning I've done about cancer since I was diagnosed - the most overarching theme is that we can't trust the cancer industry and, even well-meaning doctors are misguided. I do have a fear that, once I start down the medical road of cancer treatment - there is no turning back. But, I have listened to my body and dedicated this process to prayer - so I must listen now.
Since leaving True North, I've been in almost constant discomfort and sometimes in real pain. My wrists and ankles have what seem to be permanent inflammatory growths. My hands are usually very puffy and hurt to do the most simple things. I stiffen and swell at night, and the pain spreads up my legs and arms and into more joints like my shoulders, so sometimes get up and take Advil - something I never would do before the last month or so. I have trouble driving and opening my car door. It's wearing on me and I feel it changing how I am interacting with people - and life.
I am not ignoring it all but I do recognize that I keep making these little goals to accomplish before I really dive into the waters of what is probably 10 months of chemo and the bone marrow transplant. I want to finish this report at work, apply for this grant, clean up this mess, go on this trip.... I am so scared and saddened that chemo will limit my ability to see my precious grandchildren who are already way too used to my absence. Germs will be my nemesis and I refuse to expose them to anything dangerous-chemo drugs are found in caretakers' blood all the time. I won't expose them to any of that.
Tomorrow I meet with a PA who happened to be at Restoration Healthcare when the possible implications of the PET Scan hit me as I sat in the IV chair one day last week. I couldn't stop crying. She ordered the MRI and we talked a bit. I've needed some clarification on a couple things we discussed and...she should have the results of the MRI so...here goes. As has been the case all along, God has provided the perfect person to be with me. My friend, Judy, and I got to together the other day as we do when I am in town and she pressed to go with me. I have so much trouble asking for help in all this - how kind it is for her and for God to provide her when I just may need someone to process this with tomorrow. I have a dozen people who would rush in if I asked but, God knows best.
I have never taken people to my doctor's appointments. My friend who I live with when in CA, Michele, insisted she come to the results of the original biopsy three years ago. I was absolutely shocked when it turned out to be lymphoma and it was such a blessing to have her there.
Anyhow, I will also ask the PA to look through some recent labs, ask her about her opinions on Dr. Block (as she asked me mine but I forgot to ask for hers when I was there). Remember, Dr. Block asserts that I should travel to Chicago for 5 days every 3 weeks for chronomodulated chemo and supportive IVs. I am trying to figure out if that is wise, necessary, and if it the benefits outweigh the costs and risks. I also want to ask her what she meant when she shared that her mother died of ovarian cancer and that she thought I was going about this whole thing "the right way." Did she mean by the way I have avoided conventional therapy or does she mean by the fact that I am probably moving toward starting all that?
So...in about 3 hours, I will either be very relieved or life will change dramatically. If it has spread to the brain, I will essentially need to drop everything where it is and start acting like what everyone expects of a cancer patient. If it hasn't, I still need to move forward but sort of the way I have been - one step at a time, covered in prayer and faith, no fear or rush - just doing my best to listen and follow-through on what needs to be done. Either way, I will continue trusting the God who knows how this all turns out and who made me. Period.
We have an appointment with Dr. Andrea Shustov in Seattle March 12, who is a true T-Cell Lymphoma specialist at the Fred Hutchinson Cancer Research Center and the University of Washington. I learned about him from the T-Cell Lymphoma patients on facebook. I want to run it all by him and see what his thoughts are. We have an appointment with Dr. Haverkos in Colorado March 16 to see if he can implement what Dr. Shustov suggests to save all the travel. I will then somehow have to decide if taking all the info I get from these two very conventional doctors to Chicago is worth it.
I need God on my stones, as David Gibbs, a terrific preacher/story teller/lawyer said in a YouTube video I recently watched -just as David had God on his stones when he slayed Goliath. I need God on my stones - and, with the amount of prayer that has been whispered on my behalf, I'm sure God is here. Just as David ran toward that giant, I will continue to walk through this "valley of the shadow of death," fearing no evil and knowing he's right here by my side. "There is Another in the Fire" is my favorite song right now. I will never be alone.
XOXO
This blog is something I don't feel like I control anymore. I feel exposed when people tell me they read it. Like I said to my dear friend, Mary, yesterday - I am much more honest in the blog than I generally am in person - unless people press me about what is going on. But I feel compelled to keep this as something of a journal of it all and, what good would it do to keep a dishonest journal?
The PET Scan I had done early February came back a mixed bag. Dr. Block said that, if he saw it and didn't know all that was going on with me, he'd say the lymphoma is pretty stable - although it is definitely still there. He has the Block Integrative Cancer Center outside of Chicago. I like him and I am grateful that he is there for consultation but he doesn't know T-cell Lymphoma like the specialists I've seen do - who beg me to start chemo. As one said, "The issue is in the tissue." In other words, I have it and need to deal with - regardless of how I feel, physically.
On the other hand, the PET Scan report had a sort of hidden little sentence in it that could indicate something I haven't been able to say out loud to many people this last couple weeks - especially our kids. It indicated that there MAY be metastasis to the brain and that I need an MRI to confirm or deny that. I know some people will be hurt that I didn't level with them on this. I almost didn't tell Andy or anyone but my little sister helps me figure out the medical stuff and I knew she'd see it on the report. Saying the words, metastasis to the brain, makes that possibility too real - I have pretty much avoided it.
I had the MRI a few days ago - a brain MRI is a challenging thing. I've committed to memorizing more scripture if that gives you any hint as to how hard it was. A cage over your face and an enclosed tube - it took everything I had not to panic and woke me up to the fact that I need to be mentally stronger - although I realize I did make it and that counts for something. And, yes, I am fully aware that kids go through this and people do it all the time. Some people ask for drugs to relax; I'd like to think I can learn to handle tough things - after all, none of us know what we might be called on to handle someday.
I remember when I was first diagnosed. I would tell people what was going on and I'd see such sadness in their faces - it often jolted me. I've worked pretty hard to not cause people sadness my whole life. It's been hard to deal with. When I've told the few people what is going on right now - there is a stun in their face and a moan that often comes out of them. It makes me regret telling them and it's also like I can hear them saying, "Oh boy - that's it. She's done." I remember growing up and my mom would say that people are done for once "oxygen hits their cancer during surgery." Or when it gets to their lymph nodes. Or if it's ovarian or pancreatic cancer or lung cancer - there is no hope. I fight those old "tapes" as we used to call them - but they are always there.
And then there is the reading and learning I've done about cancer since I was diagnosed - the most overarching theme is that we can't trust the cancer industry and, even well-meaning doctors are misguided. I do have a fear that, once I start down the medical road of cancer treatment - there is no turning back. But, I have listened to my body and dedicated this process to prayer - so I must listen now.
Since leaving True North, I've been in almost constant discomfort and sometimes in real pain. My wrists and ankles have what seem to be permanent inflammatory growths. My hands are usually very puffy and hurt to do the most simple things. I stiffen and swell at night, and the pain spreads up my legs and arms and into more joints like my shoulders, so sometimes get up and take Advil - something I never would do before the last month or so. I have trouble driving and opening my car door. It's wearing on me and I feel it changing how I am interacting with people - and life.
I am not ignoring it all but I do recognize that I keep making these little goals to accomplish before I really dive into the waters of what is probably 10 months of chemo and the bone marrow transplant. I want to finish this report at work, apply for this grant, clean up this mess, go on this trip.... I am so scared and saddened that chemo will limit my ability to see my precious grandchildren who are already way too used to my absence. Germs will be my nemesis and I refuse to expose them to anything dangerous-chemo drugs are found in caretakers' blood all the time. I won't expose them to any of that.
Tomorrow I meet with a PA who happened to be at Restoration Healthcare when the possible implications of the PET Scan hit me as I sat in the IV chair one day last week. I couldn't stop crying. She ordered the MRI and we talked a bit. I've needed some clarification on a couple things we discussed and...she should have the results of the MRI so...here goes. As has been the case all along, God has provided the perfect person to be with me. My friend, Judy, and I got to together the other day as we do when I am in town and she pressed to go with me. I have so much trouble asking for help in all this - how kind it is for her and for God to provide her when I just may need someone to process this with tomorrow. I have a dozen people who would rush in if I asked but, God knows best.
I have never taken people to my doctor's appointments. My friend who I live with when in CA, Michele, insisted she come to the results of the original biopsy three years ago. I was absolutely shocked when it turned out to be lymphoma and it was such a blessing to have her there.
Anyhow, I will also ask the PA to look through some recent labs, ask her about her opinions on Dr. Block (as she asked me mine but I forgot to ask for hers when I was there). Remember, Dr. Block asserts that I should travel to Chicago for 5 days every 3 weeks for chronomodulated chemo and supportive IVs. I am trying to figure out if that is wise, necessary, and if it the benefits outweigh the costs and risks. I also want to ask her what she meant when she shared that her mother died of ovarian cancer and that she thought I was going about this whole thing "the right way." Did she mean by the way I have avoided conventional therapy or does she mean by the fact that I am probably moving toward starting all that?
So...in about 3 hours, I will either be very relieved or life will change dramatically. If it has spread to the brain, I will essentially need to drop everything where it is and start acting like what everyone expects of a cancer patient. If it hasn't, I still need to move forward but sort of the way I have been - one step at a time, covered in prayer and faith, no fear or rush - just doing my best to listen and follow-through on what needs to be done. Either way, I will continue trusting the God who knows how this all turns out and who made me. Period.
We have an appointment with Dr. Andrea Shustov in Seattle March 12, who is a true T-Cell Lymphoma specialist at the Fred Hutchinson Cancer Research Center and the University of Washington. I learned about him from the T-Cell Lymphoma patients on facebook. I want to run it all by him and see what his thoughts are. We have an appointment with Dr. Haverkos in Colorado March 16 to see if he can implement what Dr. Shustov suggests to save all the travel. I will then somehow have to decide if taking all the info I get from these two very conventional doctors to Chicago is worth it.
I need God on my stones, as David Gibbs, a terrific preacher/story teller/lawyer said in a YouTube video I recently watched -just as David had God on his stones when he slayed Goliath. I need God on my stones - and, with the amount of prayer that has been whispered on my behalf, I'm sure God is here. Just as David ran toward that giant, I will continue to walk through this "valley of the shadow of death," fearing no evil and knowing he's right here by my side. "There is Another in the Fire" is my favorite song right now. I will never be alone.
XOXO
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