May 26, 2011
This morning I retraced my steps from home to the Cancer Center to have a PET Scan of my full body. Last September, the same technicians and nurses did a scan of my body using this exact same test in the same room with the same huge test apparatus. They determined officially that I had cancer in the base of my tongue that had spread to lymph nodes on the right side of my neck---a lot of them. Now, 246 days later....Yes, it has been THAT long....with all sorts of thoughts racing through my mind, I re-enter this area of the Hospital complex to discover if I was going to have to once again face the horrors of chemo and radiation treatments.
For weeks, every little ache or pain or flinch somewhere in my body was scored in my brain as a possible indication that the cancer was creeping back. Only the PET Scan today would settle, once and for all, the big lingering question of my life, "Am I cancer free?"
Of course, they had to totally knock me out again just like the first round of testing months earlier. Once again, I had understanding and compassionate technicians, nurses, and a great doctor easing me down onto my back in front of the scan machine open mouth entrance. I few moments of prep and the the doc said to relax....and I was gone until they woke me up to stumble under their assistance to do an hour or two in a recovery room so the La La juice could wear off.
The results of the body scan had be closely analyzed by the docs so I was sent home to sleep off the effects of the test. And sleep I did because I had closed my eyes for only a few moments of fretful sleep last night as memories of so much of my cancer treatment rigors crept in and out of my thoughts. Those nightmarish memories more than once made me break out into cold sweats as I lay in the dark trying to will the first streaks of daylight to sneak into the trees outside to signal it was time to go for my test.
I called Doc Q's office a few times during the afternoon to see if the test had been sent over yet without being able to get any news....good or bad. Finally, about 6P I got the call. I held my breath as Doc Q's Physician's Assistant told me the test showed I was cancer free. She said it again and finally asked if I was there because I had not responded. I was just too choked up to speak as the tears exploded from my eyes. I thanked her from the fabulous news. I then asked her to please tell Doc Q and Nurse Mary that I loved them as well as her for walling with me through all the horrors of my battle with cancer. I guess patients do not show that kind of gratitude.....I can not imagine why!....because she was clearly happy to hear this sort of affection and appreciation from me.
I sat for a few minutes by myself and regained my composure before going to find Lieska. The dam broke again, though, before I could get the full "The test results came back and I am cancer free." After some much needed and long awaited hugs and kisses saved for this moment, we went down the hall to give the news to my mother who has suffered so much anguish throughout my battle with the cancer.
And now it is time to pass the news on to all of you....literally thousands of fantastic friends and relatives who have pushed, pulled and prayed me through the biggest adventure of my life. As I said at the very beginning of this, my motto "True Adventure Requires and Uncertain Outcome" was made just for this period of my life....and how!
Thank you for all you have given of yourself so I can live today. I will keep you informed of my sloooooow but sure recovery progress. Hugs and kiss for all....even those ugly Ham Radio buddies.
May 2, 2011
A quick summary of how I am doing today:
March 12, 2011
Doc S, my infection doc, has had me on antibiotics to fight the nasty secretions in my mouth and throat. I guess maybe that is where the most progress has been made. I can now talk for long periods of time before the yuck collects thick and nasty again. And I can now get a longer period of sleep without being startled awake drowning in the secretions. I appreciate those longer sleep periods a great deal.
I take some long walks evening after the sun goes down; I still have to stay out of the sunlight if possible. These walks started short but I try and stretch them out a bit longer whenever it feels right. I remain utterly shocked at how weak all my muscles are. I now have a better appreciation why they are telling me this is going to be a 6-9 month process.
I have tried taking some real food. I have tried a little cream chicken, chicken noodle and potato soap. Unfortunately, it did not go well. My taste buds are still totally whacked out making everything taste terrible. The good news is I was able to get some of those soaps down my throat. Oh, I was very much aware that my throat was far from normal but at least what little pain I felt was bearable. So, that is progress!
I think I am beginning to settle in with the idea with what should have been a no-brainer from the very start of this recovery. I am not going anywhere like back to work, visiting, going to work a show, etc. until I can eat regular food again. I cannot be at one of those place and just stop every 3 hours, pull up my shirt, reach in and grab my stomach feeding tube, stick in a funnel, pop open a can of liquid food and pour in some chow. I have found that doing the stomach feeding tube thing freaks people out! I have had to do it when getting a Big Day of chemo infusion and while at the hospital getting a dose of meds and hydration. Not all cancer patients have to have one of these and their eyes pop out when they see that. Hell, it freaks ME out...talk about an unnatural thing!
Since having the surgery putting that G-tube into my stomach in October, I have poured over 530 cans of liquid nourishment into my stomach. Now that I do the math, my head spins thinking about all those feedings! Those feedings have been the only source of nourishment for months; it has kept me alive without anything going in through my mouth. Amazing. I haven't lost much weight and still have a tire wrapped around my waist! I never ever would have dreamed that a person could survive by drinking a liquid. I am glad that I listened to my doctor and had the G-tube surgery. I cannot imagine having survived this long through those long periods of time without being able to pass anything down my throat. I have seen several other cancer patients who could not make themselves agree to the G-tube. The scary evidence of that decision vividly shows the struggle they have staying alive.
So, I guess in simple terms I am going to literally have to learn how to eat again. Until that is done, I am not sure what I can do as far as being "normal." But, I am for sure thinking about it. I am getting more involved at work via email and trying to help out. I am planing a radio trip in June to one of the islands off the California coast with a friend from Las Vegas. We will ride out there about a motor yacht owned by yet another friend and operate off the boat for a few days. Of course, the North Carolina place is on my mind all the time...someday...someday.
So, it is good to be alive and make some progress even if it is sloooooow. :)
I have been so touched by all the messages and mail I have received. I never would have thought that this blog would be viewed nearly 15,000 times! I hope that I can bring good news after the full body scan and with steady progress with my recovery. I think I am still having a great deal of difficulty believing that the cancer is gone and that I am going to live. I WANT to believe but until that body scan I am more pretending that I let on to my wife and mother here at the house. Maybe that is why I do not feel totally "engaged" in my recovery yet. I'll have o work on that...
February 26, 2011
February 10, 2011
February 8, 2011
Friday morning I accompanied Dennis & Lieska for his weekly visit to the social worker, N, at the Hoag Cancer Center who has served as an invaluable counselor and advocate throughout his treatment. The antibiotics had started working so he was feeling better physically than he had earlier in the week. However, he was at a low point emotionally, and he was very unhappy with certain radiation treatment logistics. I listened with a sinking heart as he told N that he was ready to quit treatment altogether if certain things could not be arranged to his satisfaction. He was so fed up that he felt ready to walk away and just let things run their course.
My observation: Dennis had been hanging in there while treatments went as scheduled, even though they were brutal. But when the infection derailed the plan he felt he had lost control of things and he went into a downward spiral in attitude.
N volunteered to contact the radiologist about his concerns. Then she reminded him of something we all “know” but often don’t fully comprehend – namely that the only thing in life we can actually control is our response to things. She challenged him to spend time over the weekend relaxing, enjoying the break from treatment, and contemplating his responses to the uncontrollable events swirling around him. N gave him a way to reevaluate and gently “whupped his ass.” (I’m quoting Dennis here…) He needed it.
Dennis had a quiet weekend. No doctor appointments, not even hydration, so he had plenty of time to rest and think. And the antibiotics continued working…so he continued to feel better.
Monday morning was an appointment with Dr. Q, his oncologist. She looked him over and asked some questions about how he was feeling physically, and she literally danced a little jig to express how pleased she was with his state of health at this point. The infection was really cleared up, and she recommended restarting radiation immediately, as in that afternoon directly after hydration. She stated that she would schedule his final chemotherapy session for Thursday. Dennis looked to me to ask the questions we had written down (although he can speak sometimes, it is a great effort and he pays a price).
- Can this radiation logistic be arranged to fit my needs?
- Can the final chemo be eliminated or done at a reduced dosage?
- If I choose to discontinue treatment at this time, how will that affect my prognosis?
Dr. Q left the room to call radiology personally to verify logistics. She said Dennis was in charge of deciding to have the final chemo or not, explaining that its purpose is not to kill the cancer cells directly. If you recall, after radiation began, the chemo treatments changed from three drugs to one. This single drug works to radio-sensitize the cancer cells so that the radiation targets them and kills them more efficiently. She advised that for the best result he should have the final chemo, but that it would be OK to reduce the dosage. I held my breath waiting for his answer: “OK, let’s do it.”
Lieska stayed with Dennis during hydration (which included the final dose of antibiotics as well as an antiviral to help with mouth and tongue sores) while I drove home to pick up his anxiety medication to help him tolerate the radiation. We made the drive from the doctor’s office to Hoag Cancer Center with no time to spare.
Enroute my daughter called to see how things were going. She was surprised and delighted to hear that he was going to have a radiation session in about five minutes. I’m sure you all join in her message: “Go kick some cancer booty, Uncle Dennis!”
And now just 8 more radiation treatments to go…
February 3, 2011
I wanted to share that yesterday my wife Sue caught a plane back to California. She is going to give Lieska, Dennis' wife, a hand for a few days.
Dennis has some kind of infection that resulted in high fevers. As a result of this the doctors put a halt to the radiation therapy. This was pretty disappointing to all of us as he was getting so close to the end of those treatments.
Sue was at the doctors with Dennis moments ago and called me with this information. He is getting intravenous antibiotics along with his hydration. Today the antibiotics began to take effect and his temperature has started to come down. In a few days things should be under control again. Then the docs will meet and we should hear what happens next and most importantly, what remains to wrap these radiation treatments up. Expect another update shortly. We will let you know what they have to say.
And thanks for all your kind thoughts and words of encouragement. I know Dennis really appreciates them.
January 25, 2011
January 23, 2011
This is Dennis' brother Larry again.
It has been awhile and some of Dennis' friends have let me know it is time for an update - so I will do my best even though there is not a lot of new information to share.
I never realized how hard the cancer treatment was for the patient, or for his family and his friends. Dennis can do little but endure. Family and friends can do even less. I know this has been particularly tough for his wife, his kids and mom.
Dennis spends most of this time in his recliner chair now. Besides going to treatments, sleeping is his primary activity. His trips to the bathroom for his regular mouth rinses are made with short tiny steps.
His voice is almost completely gone now so I can't really report much about how HE feels about all of this as we can't chat. His doctor said that this is temporary and his voice will return. Last week they found a small infection in his throat and that is being treated with antibiotics. Because of some bad coughing recently, they x-rayed him to make sure he isn't coming down with pneumonia. Results are expected next week but assumed to be good as no calls were received. His medical team seems to be on top of things, always alert and reacting promptly to any potential issue.
Dennis still goes in for daily hydration. More specifically, he is hooked up to a clear plastic bag suspended on a hook above his head, just like those used for a blood transfusion. The bag holds a liter of water to which they blend in the elixir of the day. Currently this is a bit of pepcid to help his stomach and esophagus, some magnesium and potassium to make up for losses caused by the radiation, and a dose of zofran anti-nausea medication. The water falls from the bag with a slow drip, drip, a drop at a time into a tube and travels directly into his blood stream. When watching this almost hypnotic dripping, it seems it will never end but two hours later it is over. Dennis sleeps through most of this process.
Some key dates for you data cruncher types like me.
- His final chemo treatment will be on February 3.
- Next week, radiation treatment #28, will be his last broad area treatment. The remaining radiation treatments focus solely on the site of the original tumor.
- His final radiation treatment, #39, is scheduled for February 10.
Dennis is taking a real beating now. This period has been tough on his wife and his mom but that is how the treatment works. He suffers a lot but the cancer suffers more. It dies.
January 11, 2011
As I mentioned, Thursday is a big chemo day and that's going to further slow him down for a few days, but afterwards I hope that he will be back writing to you.
When I spoke to him, I asked about his hair. He said it's mostly gone but a nice layer of peach fuzz remains. His eyebrows and eyelashes are holding well but he has lost his nose hair. And he hasn't had to shave for about three weeks....
Not needing to shave has turned out to be a good thing as his skin has become really sensitive. Dennis explained that the radiation treatments have left the skin of his cheeks and throat looking like they had a "bad day at the beach." In actual fact, he is quite solar sensitive now, so he must dash from shelter to shelter when he has to go out. Dennis occasionally gets knots in his muscles which he believes are due to dehydration so, as I mentioned in the previous post, he works hard to keep properly hydrated.
Talking hurts and leaves his throat feeling raw, particularly around the site of the original cancer, in the base of the tongue area. His saliva glands have been deeply impacted by the treatments, so that explains the mouth washes and rinses he does continuously throughout the day.
I think the saliva provides a really good example of how important something we normally ignore can be. Skipping right past its main function of helping to breakdown food to prepare it for swallowing and digestion, saliva does a lot of other things. The mouth is a warm, dark, moist place that it is a perfect environment for bad things like germs and oral yeasts to grow. Saliva breaks these down and rinses them away. It neutralizes acids that attack the teeth, gums, and esophagus. It keeps the mouth and throat areas moist so they don't dry, crack and get infected. This moistness is also very important to our ability to talk. The radiation, particularly where Dennis receives it, interferes with all these functions. Numerous times a day he has to manually try to make up for this with washes and rinses. Just listening to Dennis talk about his efforts in response, I have become much more appreciative of some of these little miracles that occur within that I hadn't even noticed before. Now, when I become aware of saliva in my mouth, I feel fortunate.
One of the biggest things that bothers him is periods of short term memory loss. He will check his work email and think he should act on something immediately, start to type and then doze off. Later he will awaken and know there was something he wanted to do but not remember what it was. Now that really bugs him. Dennis is definitely a person with an orientation to action.
In summary, Dennis is actually quite busy. Each day has a whole list of mandatory activities to do, and there are always additional demands arising-- another test, a consultation and so forth. With the fatigue associated with these treatments, he is working hard each day just to stay with the program.
The good news is that the doctors are pleased with his progress. And this week he will be half way through his radiation treatments. I believe all the sleep and even the short term memory loss are part of the whole healing process, so we just need to be patient at this time.
On one hand, I suspect there will be a time in the future when people look back at these chemo and radiation treatments with the same horror as we look back at the crude amputations of medieval times. On the other hand, I am deeply grateful that they are available to my brother now because, though brutal, they do actually work. I fully expect that we will see Dennis back to his family and friends, back to work, and back to his ham radio this year.
January 10, 2011
- 4:00 am - Awakens and has a can of food, which goes in through the gastrostomy tube in his abdomen. He has lost a lot of weight but it has stabilized, as long as he takes nutrition on a very regular schedule. Afterwards, he tries to get back to sleep again.
- 6:00 am - Gets up and does his morning ablutions. A particularly important part of this is a lengthly session of mouth washes and rinsings. With his saliva glands almost out of commission, this is particularly important, both for comfort and hygiene.
- 6:45 am - Heads off for Hoag Memorial Hospital in Newport Beach for his daily radiation session. Lieska drives each day.
- 7:30 am - Appointment begins with putting the mask on and getting locked in place. Next comes aiming the equipment, followed by a taking a CAT scan which requires 2 or 3 minutes. Evaluating the CAT scan to ensure everything is properly set up takes another 4 or 5 minutes, and finally comes the radiation, which itself last about 6 minutes.
- When finally released from the machine and the mask, they head home again where he has another can of food through the G-tube.
- 9:00 am - They are off again. Next is a trip to the doctor's office for hydration. Dennis gets hooked-up for a liter of water via the Port-A-Cath point in his chest. They have begin to add some supplemental magnesium and potossium as both get depleted by the radiation treatment. During this period Dennis brings along his eyecover and earplugs and usually is able to sleep about an hour and a half out of this two hour procedure.
- When they return, Dennis is pretty well exhausted for the day. Lieska changes and heads off for for work at about 1:30 pm.
- And then for the most part Dennis sleeps, awakes for brief periods to add a can of food, do some mouth washes and rinses, and is back to sleep.
Tomorrow I will add some additional subjective comments that Dennis shared with me.