I have started a journal to tell you all about my life as I add "dealing with cancer" to my list of distractions that steal time from my music. The following links will take you to the indicated date:
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I have some unfortunate news that I would like to share with those of you who have been using my website. On July 10th, 2003, I was diagnosed with Stage 4 adenocarcinoma of the esophagus, with metastasis to both lobes of the liver and to the bone marrow. My doctor gives me less than 6 months to live, so I've decided to prove him wrong with the same tenacity I've applied to my music. I will begin recording my 2nd CD, "Stage 4", tomorrow at the same studio which I used for my first recording. Chemotherapy begins Monday (July 7, 2003), and will continue for 5 days, 4 hours per day, with 6 one week cycles and 2 weeks recovery between cycles. I intend to use whatever time I have when I'm alert and conscious to work on my next CD. I may not respond to emails etc., but please know that I'm not throwing in the towel. I would still love to know if this site is beneficial to you :-)
My first cycle of Chemo was a little rough, but my friends and family helped me get through it with enough energy to maintain my normal computer related job (I'm the CEO of a small graphics software company called "Tungsten Graphics" (http://www.tungstengraphics.com), to continue work on my next CD, "Stage 4", and to prepare for my upcoming Borders performance. I've recorded and edited the Chaconne in Dm by Bach, and Ponce's "Theme Variation and Finale", and I recorded all of the remaining 9 pieces for the CD. I intend to go into the studio 4 or 5 more times during August and September to edit and re-record as necessary in order to get a final raw CD ready to be mastered by late September. I hope to release the CD in time for the Christmas season.
I also recorded a 1/2 hour television show for "Austin Faith Dialogue", a weekly religious public affairs program that is sponsored by Austin Area Inter-religious Ministries and has been televised for over 15 years. The show will air on Sunday, August 3, at 8:00 am on KNVA-TV, Channel 54, Cable 12.
My hair is almost all gone from the Chemo, but it was getting pretty thin anyway :-). The pain killers are doing their job, thankfully without any side effects that prevent me from playing the guitar. There is also great medication out to reduce the sense of nausea caused by Chemo. I actually gained 4 pounds during the first week! Week 2 of infusion of Chemo starts August 4th, the day after my Borders appearance for August.
I played at Borders on the 3rd of August, as planned, and it was a really wonderful experience. A lot of my old friends were there (thanks for coming out), and there were quite a few new faces whom I hope to get to know over time. The TV show for Austin Faith Dialogue also aired that morning locally in Austin.
My 2nd infusion cycle started on August 4th, and went fairly well until the end of the week when, for some reason, I got into a wave of deep depression that I couldn't shake. By the end of the week, my body was feeling like it was melting from the inside out. My throat was like chopped hamburger because the chemo was attacking my smooth muscle tissues (as it was supposed to do), but the accidental target cells (collateral damage?) were much more than just the tumors. My mind was envisioning things like trying to kill flies at a cookout by putting massive doses of DDT into each bite of hamburger. I kept thinking of all the people in my life that I might not ever get to know better - my wife, my kids, my family, friends - the more I thought about it, the more depressed I got. I began to realize how cancer kills its victims in many ways, and I knew I had to stop the process.
On Friday, I tried to pick up my daughters dog ( a 10 pound apricot poodle pup), and ripped a muscle in my right arm. My whole arm and hand swelled up almost immediately, and I was rushed to X ray to make sure a clot had not developed at the site of my catheter. The catheter, visible as a dual ported tube exiting my chest to the left of my right nipple, had been installed early on before chemo started. This port enters directly into a major vein at a point just above where the vein enters my heart. Four hours later I was still waiting in the waiting room of X ray to get serviced between the regularly scheduled X ray patients. Each time I was the only person in the room, another person would show up, sit down, and be called by the technician before their seat was warm. I thought only the army had you "hurry up and wait" :-), and I wondered why they just didn't send me home and let me call 911 if I sensed any sort of paralysis that would surely occur if a clot shot from my heart to my head. Fortunately, I didn't have a clot, however, my arm is still swollen with black and blue artifacts still visible on my right bicep.
My blood work indicated my hemoglobin level was about half of normal, so I finally qualified to receive an injection to stimulate red blood cell production. At that level, it is hard to walk more than a few feet before feeling like you ran a marathon. I thought that it would have been nice if that side effect had been anticipated before the fact, but it actually was - by my doctor , who told me I was headed there because that's what chemo does, - and by the insurance company - that stipulated in advance the level of hemoglobin that needed to be reached before they would pay the $2000 cost of the injection. It is sad that insurance companies have the power to tell a doctor when to administer therapy.
The first 4 days after my 2nd infusion was spent trying to fight constipation from the pain killers, raw throat and anemia from the chemo doing its job, nausea as a side effect of the chemo, and depression when I allowed myself to face reality. I wondered what it would have been like if I just let the cancer do its thing instead of allowing myself to get so sick from the cure that I couldn't function. The only thing that kept me going during that time was my family and those praying for me. I realized that I was not fighting this cancer for myself, I am fighting it for the sake of those people who love me. Once I could grasp that thought, it became easier to just laugh at the situation within my own body. I'm the "point man" in this battle, and the rest of the spirit of God is feeding me supplies. It will be great fun to beat this beast! By Tuesday evening of August 12 - my 8 year wedding anniversary - I was able to get out of bed long enough to sit with the family for a short celebration diner.
The rest of the week got better each day. I was able to field a couple of email messages, reviewed some TG company business, and actually practiced the guitar for an hour yesterday. I feel fine today - my throat is healed up to where I can eat soft food without any pain - and the swelling in my arm is not causing any loss to the use of my right hand. I'll be going into the studio for more editing of "Stage 4" on Tuesday and Thursday of this week, and I'll be ready to face my 3rd infusion which will begin on Monday, August 25th.
I spent the entire day editing and re-recording some tracks on August 19 (happy birthday, Mom :-), but the really good news was to come this afternoon. I went in for another endoscopic exam (the same type of exam that started this whole train of events). My esophagus has been feeling irritated, and my throat has been mildly sore, so I didn't know what to expect. When I was awakened by the nurse, I was greeted with smiles from my wife, the nurses, and my gastro-intestinal doctor, Dr. Stassen. He reported that he could no longer see any visible signs of the lesion in my esophagus! I had developed a fairly severe fungus infection in my throat and esophagus - that is the source of the irritation - but the chemo protocol Dr. Eakin is using on me (kill 'em all, let God sort 'em out) is apparently killing cancer cells faster than the surrounding tissue. Die cancer cells! hahahahahaha.....
Thank you all for your prayers and thoughts. I don't know how much this positive development can be seen as an indicator of things to come, but I am eternally thankful for this opportunity to expose through my life and my music, the infinite power of God as truly the fabric of our collective existence.
Next test will be the CT scan on Friday. My bones and liver will be x-rayed to see if the tumors there have responded to the chemo. Since the bad cells in my bones and liver are metastasized esophagus cells (i.e. not liver cells gone bonkers - just crazy esophagus cells trying to move in where they're not wanted), the probability of the chemo dispatching them where ever they try to hide is the same as it is for the esophagus lesion that has apparently retreated.
Two days into my 3rd cycle of chemo and 1) I'm still able to write, and 2) I received a report of the result of my 2nd CT. My throat is beginning to get raw again; it had healed fairly well over the last week to where I could eat just about anything. That chemo is strong poison, but it looks like it's working. The joys of chemo side effects have begun there inevitable re-emergence. I'm being more proactive this time - we'll just have to wait an see.
I'm still waiting for the biopsy result from last Wednesday. UPDATE: 3:36 pm: Dr. Eakin just called to tell me that the results from the biopsy were negative, i.e. they did not see any cancer cells in the tissue sample they removed on Wednesday from my esophagus. That is NOT to mean that the cancer is gone, but it is certainly shrunken to where it is not detectable by the naked eye, and it is small enough, if there at all, to have escaped detection from the biopsy. That result is more than remarkable, considering that it was 3 cm tall and covered 40% of the inner circumference of my esophagus in June - i.e., it was clearly visible as a large growth which was recorded via live video during the June examination, and confirmed using two samples in the lab.
Here is an extract from the most recent (exam date: Friday , August 22) CT report:
" Overall, comparison with past examinations is favorable. What appear to be tiny cysts on the current examination are likely liver metastases that have decreased in size." Note the use of the word "tiny". That was not the word used in the June report that resulted in a prognosis of less than 6 months to live.
This news is incredible and cannot be described in my mind as anything short of miraculous. The chemo treatments are definitely doing their job, but the unsung hero is the spiritual connection to God within us all via the prayers and positive thoughts from all those people whose lives I have touched. The verdict from my peers seems to be that the world will be better served by me staying alive, rather than by leaving this life in the near future. If that proves to be the case, I promise to live up to that expectation. In any case, I am doing my best to savor the thrill of facing this challenge.
The lesions in my liver, previously described as multiple, some fairly large, sites of metastasis of the adenocarcinoma present in the esophagus were initially viewed on the latest CT scan by the radiologist before he compared the CT to the previous CT. His report stated that "There are multiple small hypodense areas in the liver that could be insignificant cysts, ... and the possibility of metastatic lesions is not excluded." Had there been no well documented history of cancer from multiple tests run in June, the sum of the results of Wednesday's endoscopic exam (no visible sign of a lesion) and the CT result stated above, are likely to have led to an incorrect diagnosis that there was no cancer present in my body whatsoever! With only two cycles of chemo completed, and four to go, I'm seriously considering a less aggressive agenda for pre-arrangement :)
I go to the mastering studio with my raw cut of Stage IV, my 2nd CD, on Friday, Sept 5th. That process will result in a master CD which I will then bring to Austin's EMA, a very reputable CD manufacturing company. I'll let you all know when the CD will become available. I plan to play live at Borders, as scheduled below, on September 7th, and hope to see you there. I will again be giving away free copies of my first CD, Timeless Reflections of the Spanish Guitar", during that performance.
I'm back :-)
I've just come back home from the start of chemo infusion for cycle 5, so I decided I'd better write something now or risk having to wait another month. I now know what the word "cumulative" means. I played at Borders yesterday with my friend Hugh Chandler who had agreed to come along to help set up the PA system and to play a few pieces. My first 1/2 hour of playing was stellar, but I hit a wall after Scarlatti's Sonata L. 483 and had to rely on Hugh to handle about 30 minutes of the 2 hour performance. Fortunately, he was up to the task with some excellent playing, and even performed a couple of his own compositions. BTW, Hugh Chandler will go to Borders with me next month and probably play most of the two hours. The gig is only 2 days after the end of the infusion period for cycle 6, and I assume the cumulative effects of the chemo treatments will not abate by that time.
The two week recovery period after chemo cycle 4 was hardly enough to get me vertical again, but I hydrated as much as possible and finished getting my CD, STAGE IV, ready to send to production. My work output has been very sporadic, and on most days non-exixtent. One more cycle after this one and I start radiation therapy. Woh, pardner, what'd ya mean radiation therapy - I had been told that was otnay ecessarynay because my liver would die before any chemo to the liver could kill the nasty cancer cells. Well, brace yourselves family and friends, this news will knock your socks off. My doctor told me the results of the most recent PET scan (taken this past Friday, October 3rd.) It was an entire body scan using radioactive glucose (or the equivalent) to monitor the rate of cellular metabolic activity. Cancer cells metabolize (eat, burn) sugar much faster than most normal cells, so it is possible to estimate the size and aggressiveness of a tumor by observing how hot any mass of cells glows from ingesting the radioactive glucose as the test progresses for about an hour. Since this whole nuclear medicine field is still in its infancy, it takes a well trained doctor who specializes in interpreting PET scan pictures to accurately read the pictures and interpret the results. I had to wait until my doctor got the results from the nuclear medicine doctor before he could convert that doctor's report to conversational English. The short of it is that there is no longer any detectable cancer anywhere in body except, possibly, a much smaller lesion still in the bone marrow of my hip. That "hot spot" has reduced significantly from the July PET scan, and it might just reflect increased metabolism of the bone and marrow cells that are in the process of healing around a dead cancer lesion.
Obviously, we can't assume there are no microscopic pockets of resistant cancer cells just waiting for the level of poison to subside in my body before they once again begin to grow aggressively - probably with a much higher resistance to the initial set of drug soup. That's where the radiation and follow on treatment comes in. I will receive a very narrowly focused beam of high intensity radiation directed at the single visible tumor in my hip. They won't be radiating my liver. That will continue for about 3 weeks, one dose of radiation per 5 days each week. I've been assured there would be no adverse side effects of that treatment either, but we're ordering a prosthetic leg and hip just in case they are wrong. :-). Following that, my doctor will begin another chemo treatment schedule that he intends to define after discussion with the doctors at MD Anderson in Houston, TX, authors of the current procedures that my doctor is using in my current treatment protocol.
In other words, either the chemotherapy by itself produced dramatic results that have not ever been seen before by my doctor with any other patient with my particular set of cancers, or there is a LOT to be said for the power of prayer. I am certain in my heart that all people possess the power of God, i.e., that we are each a manifestation of God while we walk this earth. Most of us don't know it, few would want the job if they knew they had it, but we all MUST take responsibility for this world and for all the actions of ourselves and others. We are the caretakers of this world, and are especially loathsome people if we claim God is some disconnected 3rd party, and then blame that 3rd party whenever we want justification for our own greed and lack of love. When we combine our own strength and will to that of others of like mind, we can all indeed walk on water.
If my doctor had to present a stage number for my cancer at this point, based purely on the most current test results, I think I would be at stage 0. Yes, Frank seems to no longer be at Stage IV, but he is very happy to have completed the STAGE IV CD while under the threat of early termination. No cancer in this guy - WOW!
Hey, how about we now focus our prayers on the middle east (please save at least a little more for me, we're not totally out of the woods. :-)
I start Chemo again ( cycle 6) on Monday, October 27, so I decided to try to put something down in my journal before I go to never-never land for another 3 weeks :(
I have received quite a few email messages from concerned people, and from people experiencing similar challenges in their own lives. When I have the mental energy, I do try to respond directly to any email messages, but it is very taxing at this point. Please forgive me if I do not respond directly to you. I will try to discuss some of the issues here in my journal, so that issues that might apply to many other people can be viewed by everyone.
I have been seeking answers about why I am responding so well while many others succumb so quickly to this horrible nightmare. The most likely "physical" answer is that cells in my body that mutated genetically to create cancerous versions of themselves, have not acquired the higher level of immunity to toxins that is often associated with metastasized cancer cells. Because each cancerous mutation of a normal cell is likely to be a very different mutation than what might occur in another person, it is very difficult to predict the response each person will have to chemotherapy. My cancer is dying, at least to the degree it is detectable by current medical means, because my cancer cells are less resistant to the chemotherapy I am taking than are my healthy cells. That is NOT the case in a great majority of the cases of cancer, especially if the cancer has metastasized. The second factor in my case is that my body is able to tolerate the maximum doses of chemicals specified in the protocol chosen by my doctor. The chemotherapy treatment has been very aggressive because I am not a candidate for either surgery or radiation therapy (except for very limited use on my hip lesion ), and I was in otherwise very good medical health at the time I was diagnosed with cancer. The chemicals infused into my body during chemotherapy are the extent of what medical science has to offer me. Many people suffer side effects of chemotherapy that force their doctor to reduce the level of toxins infused during their treatment. Lower doses of medication, plus more resistant strains of cancer cells, reduce the chances of a favorable outcome. However, you must trust that your doctor is doing the best he or she can do for you. What is tolerated by my body might easily kill your body, and vice versa. Your doctor will most likely be monitoring your blood and other factors on a regular basis. Be sure to report *any* problems, no matter how minor you may perceive them to be.
There are many new drugs that counter the negative side effects of chemotherapy. That is one area where you and your doctor might be able to work together to find you the help you need to stay healthy during chemotherapy without having to reduce the strength of the cancer fighting drugs. The other area to seek help is through family, friends and other concerned people. Don't be afraid to seek the help of others. It is not a brave act to wear yourself down doing tasks others will gladly do for you. Their love comes through their offers of help - accept it as you would want them to accept your love if the situation were reversed. I sometimes feel like a real slug, but I get over it quickly :-) ... enjoying meals in bed, musing about having chicken soup and having it magically appear on my beside stand. Ahhh, the joys of being incapacitated :-) I joke a lot about serious issues, but that is my way of coping. If that offends you, I apologize, but it is an important aspect of my healing. I sincerely hope you find it helpful to get a chuckle or two at my expense. You will need other people's help during this period. If you really plan to survive, you will accept all the help you can get. Your continued presence on this planet will be all the reward your loved ones will need.
I talk a lot about the power of prayer in my remission to date, but that is not measurable directly by medical means. Would I have responded as well if I did not use prayer as an integral part of my struggle? Where did I get the strength to survive this cancer, and to record and edit a CD of classical guitar music while diagnosed with STAGE IV cancer while undergoing massive doses of chemotherapy? That did not come from my medications. I believe it came from the power of God that is embodied within all people, and which has been focused in my direction. If you consider that prayer is just the act of invoking and focusing the mental and spiritual powers that exist within all of us, than prayer can focus the natural curative factors that are present in own bodies. Call it prayer, meditation, or whatever your chose to call it, but I am living testimony that when I have sought help via that channel, I have truly felt it, and it has helped me get past some rough times.
Some people have asked me what chemicals are being used in my treatment. First of all, keep in mind that no two cancers are the same animals living in the same environment. The cancer itself, plus the state of your own body work in conjunction with chemotherapy. Nevertheless, it may be useful to know what has been done to me if for nothing more than to discuss it with your doctor so you can get another data point to help explain the reasoning for choosing his or her method of treatment. Here is a list of the chemicals and doses:
Decadron 20mg pills 12 hours before taking Taxol
Anzemet 150mg 5 day cycle, daily in office infusion
Decadron 20mg 5 day cycle, daily in office infusion
Emend 125 mg pill Day 1; 80 mg pill Day 2 and 3
Cisplatinum (Cisplatin) 15mg/m2 = 30 mg drip infusion Days 1 - 5
Taxol 200 mg/m2 = 400 mg infusion 24 hour pump Day 1 only
5FU (Fluorouracil) 750 mg/m2 = 1500 mg 24 hour pump Days 1 - 5
Nexium 1 pill day for reflux
Kytril 1 mg 3x day as needed for nausea
Neulasta 6 mg injection after chemo for WBC production
Aranesp 200 mg injection, escalated 10/27 to 300 mg for RBC production
That's about all I can write for now.
Wow, I have finally finished the initial 6 cycle protocol specified by my doctor! It has been a very hard road, much more so than I had prepared for. It is good in some ways that I was so naive at the outset. By the time I realized what I had signed up for, I was far enough along to have gotten into the routine and, fortunately in my case, I was already beginning to see positive results. That thought is what leads me to this journal entry.
Where do I go from here? My survival beyond this point was not predicted and was certainly not expected. My life insurance company was so sure I and others in my situation would terminate within 6 months that they had contrived a standing offer, called an "accelerated death benefit", which was clearly designed to benefit the insurance company by allowing them to ultimately pay out a significantly lower death benefit to the survivors of policy holders. If you win, you pay lower life insurance premiums and have some cash in the bank earning interest. If they win, your beneficiary gets less money. The real question is: "Will I prove the actuary wrong in this one case?" The larger question I think we should all consider is: "What can I do personally to maximize that probability, and can a positive outcome be more generally predicted for the future based on any of those actions?"
There is no well worn road which leads to a guaranteed, or even a reasonably certain outcome in the progression of cancer. Has anything useful been discovered in my struggle, or will my case just been another lost data stream destined to wallow in obscurity until it becomes irrelevant to any future purpose whatsoever? I have been trying to gather data about similar cases to my own, in hope that I could discover some set of similarities that could be justifiably interpreted as useful guidance or direction to anyone waiting their turn to live this nightmare. I am publishing this information for others to use in any way they can devise to help humanity deal with this problem. It is sometimes personal information, but I believe our obligations to each other far outweigh ego concerns that separate each of us from the power of God that we share in this universe.
Here are some questions I have that may be a good starting point. Please email me if you'd like, I will try to personally answer any email messages - you might have to be patient if I reach overload.
- Does anyone know details about the treatment plan, and other useful and pertinent factors surrounding the case of someone with a similar overall diagnosis and prognosis to my own? I have not been able to locate any information of this type, but it would be so useful in plotting my next move. For example, I now have two very distinct approaches I can take as a follow on to the initial 6 cycle protocol. Within each approach there are many variables.
1) Approach #1: Stop all chemo, regularly monitor my body for any cancer activity, and try to adjust my eating habits, and lifestyle in ways that seem logical to discourage future cancer growth.
This approach makes sense to me for several reasons. First of all, my body has been very debilitated by the chemo treatments. I am considerably weaker physically, I am most often very tired, I am suffering from peripheral neuropathy (tingling in my toes that I've been told will eventually go away.) My normal body defenses are also weakened, making it easier for cancer cells to establish new quarters in some other hidden area of my body. My skin, especially my face, has dark patches with total hair loss over most of my body. I want these symptoms to go away because I want to live a "regular" life. Quality of Life is the main argument in favor of this approach. I play the guitar - no, I actually "live" the guitar, and I would NOT like it very much if, for example, the peripheral neuropathy moved to my fingers and became permanent. I might get a job as an actor if they ever redo the Adam's family, but auditioning for Uncle Fester II doesn't have all that much appeal to me at this time. The other logical impetus toward this approach is that if the cancer comes back, it probably makes sense to have my body otherwise in its most healthy state in case I have to tolerate another chemo onslaught similar to what I've just been through.
My question is this: "Does anyone out there know anyone who had a similar curative reaction as mine to the chemo and was suffering from a STAGE IV version of esophageal cancer that has moved to the liver and bone marrow?" That question presents a set of constraints that are very tight. I have read that there are about 13,000 esophageal cancers diagnosed each year, and that STAGE IV versions have about a 0.1% long term survival rate. That's 13 people per year who do not succumb to the STAGE IV metastasized versions of the disease, and it gives no indication of exactly where metastasis has occurred in any of those cases. It is also clearly a "swag" number (was it 13,005 cases? - maybe just over 12,000? - maybe just nobody knows, but a guy who published a paper on the subject decided to give it his best guess?)
I am leaning toward this approach because I don't like putting poison in my body without having some way to monitor the desired effects. The undesired effects are clearly there - and I don't want to endure them anymore if it is isn't necessary to do so.
2) Approach #2: Begin a maintenance dose of chemo in hopes of keeping the poison at a high enough concentration in my body to kill any resistant cancer cells so there will never be a recurrence of the disease.
The thinking behind this approach is that there are trillions of cells in the body, and it is likely that some cancer cells have survived even though medical science lacks the means to detect them at this time. In other words, I am not truly in remission, I'm just basking in the stupor brought upon by our own technical ignorance. There is certainly a LOT of evidence that most cancers fall into this category. My doctor suggested that one tactical method to this approach would be to actually increase the dosage of each chemo drug, but to administer it sequentially, rather that in parallel with the other chemo drugs. The theory would be that maybe certain cancers cells will die with chemo concentration 2x instead of 1x, that certain cancer cells in my case might only be responding to one or more of the chemo drugs that they have used, and that it would be a mistake to allow weakened cancer cells to also regain their strength by completely stopping the poison. The down side is that there is no way to monitor that approach from the perspective of the living cancer cells. We can't detect any right now! Also, if we increase the dosage of each individual drug, what will happen to the side effects associated with that drug? We can't see the cancer today, how do we know if the maintenance drugs are doing anything other than keeping the rest of my body from recovering its full strength, and that they are just killing me slowly?
This is where I would love to hear from others who might have tried the maintenance approach. Has it worked?
I sincerely hope that my efforts to publish this data is found to be useful to others. I will continue to write on this thread if new circumstances arise.
If you send me email, please make sure that you provide me a valid return address so that I can reply to any questions. I have just received an email from "me", obviously an alias designed to protect the sender's identity. Unfortunately, I cannot use that address to reply to the sender, so I cannot send her and her husband the reply I had written.
Well, bad news - the cancer is back :(
My wife and I were shocked by the report from a PET scan I took on Wednesday. PET scans detect elevated metabolic activity, and are very accurate in detecting cancer colonies anywhere in the body. A CT scan two weeks ago showed no cancer present (it couldn't detect it anywhere), but the PET scan is a more definitive test which we had naively expected to confirm the CT result. We had hoped that 18 weeks of chemotherapy would have at least resulted in some longer period of remission, but such is not to be the case. The cancer is back in all three place (esophagus, liver, and bone marrow), and has now been detected in two other locations within the bone marrow; i.e. it is not only back, but it has also spread. I have to admit that remission was fun while it lasted, but I will certainly take any such declarations in the future with a large grain of salt.
My plans were to go to a detoxification center this week to see if I could clean out some of the poison from the chemotherapy. I had almost reconciled myself to a week of eating only raw fruits and vegetables while getting my plumbing hosed, but there's no use doing it now. New poison is waiting for me at the infusion center. The really sad news to me is that I will have to pay for the new poison out of my own pocket. The cost for the new drug will be between $8000 and $10,000 per month, depending on my weight. The drug recommended by my doctor is not yet approved by my insurance company. It has been used for many years with about a 50% success rate in Europe, and is currently approved in the U.S.A. by Pacific Life and Annuity ( my insurance company) only as a treatment for colon cancer. Needless to say, that's a huge financial hit which I may decide not to incur if other promising options can be found.
I am now experiencing the negative affects of cancer - not just chemotherapy. My liver is clearly causing me a lot of pain, I have much more trouble swallowing, even water, and I have been vomiting almost every day for the last week. Depression is back, and it is harder to shake. I'm angry - an emotion I rarely feel - and that makes me even more depressed. I don't want to put my family through any more pain, but I am helpless to prevent it. Grrrr... @%&*$# @?*&% ^$#@*(+. ....... There, now I feel better! One can't grieve forever :-)
My wife and I are getting through it one day at a time - that's really all of us can say even when we think life is eternal. Each moment together has taken on much more importance that I would have ever thought possible. All I can ask for is prayers to give us the strength to deal with whatever the future brings. I'll continue to update this journal to report the ongoing saga as my time and energy allows.
-------- more as it develops ...
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