The immortal Bob Marley sang a song entitled "Three Little Birds" where he sings (and I quote) " Don't worry...about a thing ....... Cause every little thing ... Is gonna be alright." He repeats this line many times in the song. Well for the past couple of days, I have been singing this in the Mini (my recovery car) with the stereo blasting it out and the sunroof and windows opened for all to hear. In case you haven't figured it out yet, music is very important to me!
I have been visiting NIH the past few days (Friday 4/25, Tues 4/28, and today). They have been testing me in ways that I never thought I'd be tested. On Friday they ran a battery of tests which included: blood work (I do have blood in my veins); ultrasounds of my arms & legs (to prove that my veins & arteries are working without clots ... all is well there); ECHO & EKG (yep, I do have a heart despite popular belief); a chest x-ray (just in case the ECHO & EKG lied, but still confirms I have a heart); a brain MRI (got a brain) so to steal my son's line, I might still need to get some courage :-) ; and then a CT scan of my chest, abdomen, and pelvic region. Yesterday, I had a PET scan to confirm the cancer. Today I had a pulmonary test to prove that I can breath.
After all this testing, I met with Dr. TR (a fellow working at NIH on the clinical trials) and Dr Sch. (the lead of the clinical trials) of NIH. Here's the good part ...
The NIH doctors informed me that they can not find any evidence of disease. After all the scans, tests and reviews, they can not find the tumor on my liver.
They can not find the tumor which is the cause for all the concern. Bottom line here is that the NIH doctors are very confident that their findings are correct after reviewing my previous CT & PET scans and reports and then comparing them to the latest scans & reports. To use their words, I'm a great candidate for the clinical trial except that I do not have anything to run the trial against at this time.
My sister & I were both flabbergasted and were on the verge of disbelief. In an effort to convince us and to prove out the most recent results, I am scheduled for a "3-phase" CT scan on the liver tomorrow. This scan is a much higher resolution scan and more focused on the area of concern. Thus, if this high resolution, 3-phase, "super-di-duper" CT scan comes back negative, then the veil-of-question that I have will be lifted, and I will truly believe these results (although I pretty much believe at this point, I just don't want to move along without leaving every stone unturned).
What a day! Talk about a 180 degree turn! Can we use the term roller coaster here! A month ago I was recovering and a survivor; then all of a sudden I was Stage 4 and fighting for my life; now I may be back to recovering survivor. Wow!
Sorry if this roller coaster is tough on all, I'm just reporting things as I get them! However, with this tidbit of news I can only say that...
Life is Good and looks to be getting better again!
Wednesday, April 29, 2009
Wednesday, April 22, 2009
I Feel Good - The Great Irony
Singing ( actuallyyelling) to the tune that James Brown made famous, I have to admit that "I FEEL GOOD, LIKE I KNEW THAT I WOULD NOW." This is the irony that I find myself in. I have been recovering from radiation/chemo for quite a while now. My stamina is still building, my appetite is getting better, food is enjoyable again, my repertoire of culinary delights continues to expand, and I find that I can eat things now that I haven't been able to in the past. Heck, I've even been able to stop taking Caumadin (thank goodness) so I don't feel (in true medical terms) yucky. Overall, I feel as physically good as I have in the past year or so.
So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!
OK, enough lamenting! Here's what's happening these days.
I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.
OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!
So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.
I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)
I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.
Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.
So how can it be that I'm technically more sick than I've ever been in my life? I find this to be completely ironic. It would border on comical if it weren't so serious. I am truly amazed by all this!
OK, enough lamenting! Here's what's happening these days.
I have been in contact with both NIH and Johns Hopkins. Both organizations show a true interest in me as a possible clinical trial candidate. Quite honestly, if this were compared a sports free agency negotiation, I think that I might actually hold the best hand for negotiating with the teams vying for my particular inclusion in their trials. Essentially, the type of cancer that I present to them is fairly rare. Thus, the chance to use me as a data point in their studies probably has them figuratively salivating over my affliction. This poses another irony. I'm desired for the difficulty of curing my cancer, but I'm in this position because of the difficulty of curing my cancer. Ugh, can become too philosophical if I keep this up. So, I think I should stop this train of thought and get back to updating you all.
OK, both organizations show an interest. I have sent reams of info to NIH & JHU. These include CT & PET scan reports from the beginning to the most recent ones done. Also sent are: pathology reports; blood test results; info from my surgeries; pathology samples & slides from surgery and from my initial diagnosis; post operative reports; and more things than I can remember. I actually sent one organization a 27 page fax trying to answer all their requests and then received another request from them wanting more things that I had to get to them from the Washington Hospital Center. Indeed, this required WHC to get permission to release information to JHU and then another release form to send NIH information. I'm beginning to believe that the bureaucracy to get medical things done is worse than the government bureaucracy (and I work for the government). Please, Mr Obama, get medical electronics records passed through soon!
So, the bottom line is that I am making progress in getting accepted by a clinical trial and expect to hear back anytime from NIH. I already have an appointment with JHU with a couple of their doctors to take a look at me and discuss options.
I have also been generously offered by Molly & Don (friends in Houston) to make use of their home as a place to stay should I want to consider treatment at MD Anderson Cancer Center (where Molly was treated and cured). Mary (my friend with the the brain tumor who I've never actually met) has offered her mother's home to me as a place to stay should I want to get looked at by the Mayo Clinic where she is going to for her treatments. It still amazes me how people rise to the occasion to help in these crazy times. (More about this to come still in my next blog)
I believe that once I get all the info regarding my options, the most difficult part will making my decision as to which path to take. I have absolutely no idea how I will do this. I'll likely discuss it with my sister & brother-in-law; some of my close friends; my current doctors; and then pray for some insight. Then after all the input, analysis, and advise I'm pretty sure that the final decision will come from what I feel in my gut is the right way to go. Man, talk about the decision of a lifetime.
Well despite all that is happening, I can still relish in the fact that "I FEEL GOOD." Thanks for the yell, James Brown! It sure reminds me that Life is Good.
Thursday, April 9, 2009
An Amazing Transformation
Its amazing how things can change in a moment's notice. Back in January, I was one of the happiest people on earth having just completed my last radiation therapy. I was NED (No Evidence of Disease), I kept the doctors from putting a feeding tube in me, and I was on my way back to health. Over the last six weeks, I have been taking a cancer survivor's class at the Wellness Center with my chemo mentor, Toby and 23 other survivors. My taste buds have almost come back from the assault of chemo, and I've been able to learn how to eat again with more knowledge about foods I'm OK with coming daily. Most things were going well for me with some exceptions.
Given all the good things coming my way and my 1st set of scans being taken, I was sure that all would go like clock work. I guess you could say I was feeling pretty confident. So after the CT scan came back with some cause of concern, I felt a bit of concern, but not too much. Then when the PET scan continued the concerns, I felt a bit less confident. I had an appointment to see Dr. S (my chemo oncologist) to get an answer regarding the results.
The appointment is when the great transformation occurred. Dr S informed me that the CT & PET scans show that the cancer was indeed back. Not to mention that it had metastasized to my liver. Thus in one fatal swoop I went from a celebrating cancer survivor who was NED and on the road to recovery, to a Stage IV cancer victim with limited options. An amazing transformation!
I was told by Dr S yesterday & Dr. P (my oncology surgeon) today that they have exhausted all the tools that they have in their toolbox. Thus my options are these:
1. Clinical Trials: experimental treatments going on at places like NIH, Johns Hopkins, or other research centers.
2. Second Line of Chemo: The chemo treatment that I have received was considered the strongest thing that could be thrown at this cancer. Apparently, the cancer did not respond as hoped. Thus, a different set of chemos can be considered, however this set would not be as strong and therefore there is very little confidence that the results would be anything less than what would be desired.
3. Live & Let Live: Basically the statement here was enjoy the rest of my life without doing anything more to fight the disease. As many of you know, this really isn't my style. I'm just hate to lose too much!!!
So without further ado, we are investigating clinical trials with NIH & Johns Hopkins.
The fun is just beginning again. Looks like there is a lot more to go in this cancer adventure. Wish me luck and say a prayer. I can certainly use it!
PS: On a side note, I was able to take a bit of an escape from this craziness by spending much of the day with Lori and Sam (Lori's dog). It was a wonderful respite and much needed. Thanks Lori (and Sam)!
Given all the good things coming my way and my 1st set of scans being taken, I was sure that all would go like clock work. I guess you could say I was feeling pretty confident. So after the CT scan came back with some cause of concern, I felt a bit of concern, but not too much. Then when the PET scan continued the concerns, I felt a bit less confident. I had an appointment to see Dr. S (my chemo oncologist) to get an answer regarding the results.
The appointment is when the great transformation occurred. Dr S informed me that the CT & PET scans show that the cancer was indeed back. Not to mention that it had metastasized to my liver. Thus in one fatal swoop I went from a celebrating cancer survivor who was NED and on the road to recovery, to a Stage IV cancer victim with limited options. An amazing transformation!
I was told by Dr S yesterday & Dr. P (my oncology surgeon) today that they have exhausted all the tools that they have in their toolbox. Thus my options are these:
1. Clinical Trials: experimental treatments going on at places like NIH, Johns Hopkins, or other research centers.
2. Second Line of Chemo: The chemo treatment that I have received was considered the strongest thing that could be thrown at this cancer. Apparently, the cancer did not respond as hoped. Thus, a different set of chemos can be considered, however this set would not be as strong and therefore there is very little confidence that the results would be anything less than what would be desired.
3. Live & Let Live: Basically the statement here was enjoy the rest of my life without doing anything more to fight the disease. As many of you know, this really isn't my style. I'm just hate to lose too much!!!
So without further ado, we are investigating clinical trials with NIH & Johns Hopkins.
The fun is just beginning again. Looks like there is a lot more to go in this cancer adventure. Wish me luck and say a prayer. I can certainly use it!
PS: On a side note, I was able to take a bit of an escape from this craziness by spending much of the day with Lori and Sam (Lori's dog). It was a wonderful respite and much needed. Thanks Lori (and Sam)!
Saturday, April 4, 2009
Doc, Your Kidding Me Right!?!?!
The first thought that came to mind when Dr. S, my oncologist told me the results of the PET scan were, "your kidding me, right!" Well, she wasn't. Naturally I want to hear that all is well and keep going your merry way until the next set of tests. Then I'd want to hear that again , and again, and again. Well like Dave-o once said to me with a Cheshire cat grin when we were verbally bantering with one another, "How does it feel to want?"
The PET scan continues to cause the concerns that the CT scan started. According to Dr. S, there are a couple of marks on the frontal lobe of the liver that could be metabolically active (I think I got that right). Additionally, the PET scan brought up another concern in the mid-esophagus region. Dr. P (my oncology surgeon) once told me that this was one thing that he was worried about given that he observed skip lesions going up the esophagus during surgery. I am schedule to meet with Dr. S this coming Wednesday to talk about all this and to discuss the next step. We'll see what that brings! The cancer word was not yet used in our discussions. All she said was "concern." My sister & I will find out more on Weds!
If your wondering, I guess you could say that my main emotion here is anger. Having gone through the enjoyment of chemo, tacked on with the fun of radiation, and the shear excitement of surgery (not to mention the pain that followed that ... oops I guess I did mention it); I feel as though there shouldn't be a result of this kind with the notion of follow-on tests. I guess cancer (or that which causes "concern") just doesn't like to fight fair ... the Bastard!
Well, I guess I'll just have to be just as mean and underhanded in my response to it!
So, I have a few more days of suspense coming up and then a discussion of the way forward. My guess is that includes more tests. My prognostic bracket (March Madness reference here) has me in for an endoscopy and possibly some sort of biopsy for the liver "concerns." Only Dr. S knows what she has in mind at this point. We'll find out soon, then I'll let you all know.
Anyway, I'm not letting this stop my enjoyment of things going on around me. My kids start their soccer seasons today & tomorrow. I'm coaching the "greatest 4, 5 & 6th grade girls" soccer team today. I also get to coach my men's team tomorrow (I'm still too weakened to play). I am eating yet a greater variety of foods still. Tonight I get to be the live auctioneer at the gala at St. Catherine Laboure School (a fund raiser) which I've had the pleasure of doing for the past few years.
So life continues, and continues to improve. Basically.........LIFE is Good....still!
The PET scan continues to cause the concerns that the CT scan started. According to Dr. S, there are a couple of marks on the frontal lobe of the liver that could be metabolically active (I think I got that right). Additionally, the PET scan brought up another concern in the mid-esophagus region. Dr. P (my oncology surgeon) once told me that this was one thing that he was worried about given that he observed skip lesions going up the esophagus during surgery. I am schedule to meet with Dr. S this coming Wednesday to talk about all this and to discuss the next step. We'll see what that brings! The cancer word was not yet used in our discussions. All she said was "concern." My sister & I will find out more on Weds!
If your wondering, I guess you could say that my main emotion here is anger. Having gone through the enjoyment of chemo, tacked on with the fun of radiation, and the shear excitement of surgery (not to mention the pain that followed that ... oops I guess I did mention it); I feel as though there shouldn't be a result of this kind with the notion of follow-on tests. I guess cancer (or that which causes "concern") just doesn't like to fight fair ... the Bastard!
Well, I guess I'll just have to be just as mean and underhanded in my response to it!
So, I have a few more days of suspense coming up and then a discussion of the way forward. My guess is that includes more tests. My prognostic bracket (March Madness reference here) has me in for an endoscopy and possibly some sort of biopsy for the liver "concerns." Only Dr. S knows what she has in mind at this point. We'll find out soon, then I'll let you all know.
Anyway, I'm not letting this stop my enjoyment of things going on around me. My kids start their soccer seasons today & tomorrow. I'm coaching the "greatest 4, 5 & 6th grade girls" soccer team today. I also get to coach my men's team tomorrow (I'm still too weakened to play). I am eating yet a greater variety of foods still. Tonight I get to be the live auctioneer at the gala at St. Catherine Laboure School (a fund raiser) which I've had the pleasure of doing for the past few years.
So life continues, and continues to improve. Basically.........LIFE is Good....still!
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