UncleDoug

Journal entry for September and October 2005 Dear Friends and Family, Thursday, October 6, 2005: Since my last missive on the occasion of the passing of Star Trek Scotty (James Doohan) in July, I have had adventures enough for men half my age, and enough experiences to last a man twice my age. I have made new friends, lost some old ones; seen parts of this earth which were certainly made only for the eyes of God and caught a personal best Coho salmon. Been up, been down; gotten better, gotten worse. Said some dumb things, apologized for same and learned a couple of truths which weren’t in the owner’s manual issued at the occasion of my birth. I have been pleased, somewhat surprised and humbled by the response garnered by my lack of posting over the past two months. Never did I realize that there was as much interest in my writings as there evidently was. For those of you who have read and enjoyed them, thank you. I will attempt to keep them coming as long as I am able – which, I hope, will be for some time to come. On Friday, August 19th Dr. Xuan started me on a new chemotherapy protocol. This procedure would be every Friday for approximately 5 hours duration, with three weeks on and one week off. This protocol was meant to deal with the portion of the tumor which had metastasized to my right adrenal gland, kidney and liver. The chemicals include Platinol (Cisplatin) and Camptosar (Irinotecan). I never minded the time and effort it took to sit still for the 3 hours a day, 3 days a week, the first protocol took. But, somehow, this new regimen is a different kettle of fish. There’s something about 5 straight hours in a chair that pushes my anxiety level to new heights. I’m quickly turning into the chemotherapy patient from hell. In addition to the new chemo protocol Dr. Xuan sent me down to the radiation therapy department for treatment of my left lung tumor. This is the area where the disease first took hold. I was scheduled for 25 treatments over a 5 week period. Luckily the first of three rest weeks fell on the week of Don and my cruise, as did a rest week for chemo. (Journal entry on Alaska Cruise to follow.) Radiation is a goofy change of pace from chemotherapy. I had no idea what to expect but my initial impression was very good. The department is staffed by two doctors: Dr. Galucci and Dr. Leon. Dr. Galucci is old-school. About 65. All bed-side manner and soft voice. Touchy-feely with a hint of “Daddy’s going to make it all better.” Thank the good Lord in His infinite mercy, I was goin’ home! I don’t know how much the human body and spirit rely on traditional images and attitudes when it comes time to heal. But I do know that a doctor with the age and eye-twinkle of a Marcus Welby mixed with the wisdom and self-assuredness of a “Trapper” John, M.D. By golly, here was a doctor I could trust! Compared to chemo, radiation goes by at the speed of light. First they do a CT scan to map out the tumor. Then, while you’re on the table, they tattoo reference points. In my case, on my chest. These are used by the radiation techs to line up the X-ray machine for your treatments. Every weekday morning at 8:00 am I would show up at the Tacoma Hospital Radiation Therapy Department for treatment. I would strip to the waist, putting on a robe so as not to offend any of the more gentle souls in the area. I would climb on the table, on my back, while the techs lined up the X-ray. The only real difference between a normal X-ray and a treatment X-ray is the length of time you are subjected to it’s death-dealing rays. Laser guided, the X-rays can be placed in such a way as to come together at a specific point in the body. I was given approximately 20 seconds (a standard X-ray picture takes less than ½ a second) from the front and 20 seconds from the back. After a time I developed a sunburn just inside my left breast. But the results were worth it. This went on for 25 days. Fortunately, Dr.’s Xuan and Galucci made concessions so that I could make my cruise from the 4th thru the 11th of September. Both Chemo and radiation treatments have “bye” weeks, or built in rest weeks so that your body can recover. The only concern of Dr. Galucci was the tumor in my left lung. There was a feeling that any physical stress could cause a collapsed lung due to the placement of the tumor. Luckily, that didn’t happen. Well, I was feeling like a prize pincushion at the county fair. Now that I had my chemo and radiation timed out so that I could make our Alaskan cruise, what could else possibly go wrong? Well . . . let me tell ya.. . . In the infinite magic wrought by the Chemotherapy Gods some side-effects have a tendency to go just a little bit more South than others. It seems that something in the first round of chemo had the audacity to help push along 40 years of lousy dental hygiene leaving me with several teeth soft enough to entice the Tooth Fairy out of retirement. Long story short . . . 4 days before the boat leaves the dock I’m eating strained peas and drinking all the milk shakes I can choke down. I figured that since about 80 percent of anyone’s reasoning for going on a cruise is the food I’d better get this little problem straightened out. The Tuesday before the Saturday sail date I dropped into my local dentists office and had 6 teeth pulled – and before the job was done I bit down in a bucket of goop and got a partial plate fashioned out of my five front upper teeth. I picked them up on Friday and walked up the plank Sunday morning. Eggs Benedict and Surf ‘n Turf here I come! On my return to Tacoma I finished up my radiation treatment for the left lung. Dr Galucci said that if he had been presented with that clean of an X-ray at an initial workup he would have concluded that there was “no cancer present”. Be still my beating heart! This was terrific news and I told my mother she could start using the “R” word (remission) when it came time to talk to the girls about my left lung during her quilting club meetings. As for the right side of my abdomen. That’s another story I found out. Dr Xuan had been studying my charts for the first one and a half courses of chemotherapy. We knew that the first course using Carboplatin and VP-16 showed marked improvement in the size of my tumors – and then plateauing. Now, half-way through my course of treatment using Cisplatin and Irinotecan, and after a CT scan of my neck, chest and abdomen on October 14th, it was determined that rather than shrinking, my tumors were, in fact, getting larger. Obviously this second course of chemo just wasn’t working. My extraordinary resistance to the side-effects of various chemicals may indicate that I have a resistance to their therapeutic benefits as well. I just don’t know. Dr. Xuan has immediately switched me to Topotecan. The side-effects are of the ordinary kind (nausea, vomiting, tiredness) and, I guess, the big one for this chemical: constipation. All-in-all it’s been a rather up and down month for me. My brother took me on a trip and the cruise of a lifetime. (Yes, wonderful food and plenty of it!.) I met new friends who were old friends who were new friends all at the same time (Hi, Susan!). I caught my magical fish at the same exact instant in time that my brother caught his magical fish and we shared them with magical friends. I saw Orca and porpoise. Whales and whale watchers. I panned for gold ($4.69, thank you!) and bought small gifts. All these adventures and more next Journal entry as I expound on the wonders of the Inland Passage as seen through the eyes of a newly-reborn, wondering-wandering child with a new set of choppers and a new, thin, white beard. Again, I apologize for the intermission in my Journal writing. I’ll up my intake of Senna-S and Glyco-lax in an attempt to stave off this new-found danger of constipation and irregularity, in all things. Sincerely, “Uncle” Doug Russell Tacoma, WA

To all and Sundry: I have been on a short hiatus without realizing how my absence might have effected y'all. A family friend passed from pancreatic cancer this past month and some of my scans have been less than stellar. All of you have been so supportive and loving and I only just now realize how much I've missed you. Look for a wordy, boring and hopelessly useless Journal entry this week. I will be posting an email from on deck the "S.S. Remission" next weekend as my brother takes me on a long anticipated cruise to Alaska. His way of bonding and reaffirming our family and sibling ties. I love him for it. I'll be writing again very soon. Thank you all for your concern. "Uncle" Doug Russell Tacoma,WA

To all and Sundry: I have been on a short hiatus without realizing how my absence might have effected y'all. A family friend passed from pancreatic cancer this past month and some of my scans have been less than stellar. All of you have been so supportive and loving and I only just now realize how much I've missed you. Look for a wordy, boring and hopelessly useless Journal entry this week. I will be posting an email from on deck the "S.S. Remission" next weekend as my brother takes me on a long anticipated cruise to Alaska. His way of bonding and reaffirming our family and sibling ties. I love him for it. I'll be writing again very soon. Thank you all for your concern. "Uncle" Doug Russell Tacoma,WA

Wonderful news on your scan! NED rules! I'm sure your MRI will go as well. Doug

Journal Excerpt Wednesday, July 20 Scotty was beamed up last night for the final time. Thank you, Mr. Chief Engineer. I was never what you’d call a die-hard “Trekkieâ€

Journal Excerpt Monday, June 27th Today I met with Dr. Cox, Dr. Xuan’s stand-in while she’s on vacation. After the usual mundane necessities of height, weight (10 lb. loss in the last month – a total of 35 lbs. lost in 3 months), medication refills, blood work and various and sundry prodding’s and poking’s, he checked the CT scan workup from the 17th and told me that the results were positive: a 50% reduction in the size of the adrenal tumor. In the words of the immortal Yosemite Sam, “Yee-hah! Take that you lily-livered varmints!â€

After 4 cycles of chemo with carboplatin and VP-16 I had my first CT scan to check for any changes. The result is a 40-50% reduction in size of my Adrenal tumor. I start my next cycle of chemo tomorrow. My question is whether this reduction is normal or should I be hoping for a more substantive shrinkage? Is there such thing as a "normal" reaction to the chemotherapy after just a few cycles of infusion? I would appreciate any information from someone who has been there, done that. "Uncle" Doug Russell

Donna: I have had 4 infusions of Carboplatin and Etoposide and have had few side effects. My hair has thinned somewhat, but that only lasted a couple of weeks. Everyone reacts to the chemotherapy in their own way. My other side effects are mouth sores (which are rare) and swollen ankles, which NOBODY has ever heard of. Perhaps the best is yet to come - only time will tell. Best of luck! "Uncle" Doug Tacoma, WA

Jen: Not as long-term as yours, but for the past 4 weeks or so I have had chronic diarrhea. 6-7 times a day (and night) accompanied by chronic flatulence and belching. It seemed that my system was just one big gas factory for several weeks. This came even though I'm taking morphine ER daily causing constipation which I've had to take Senna and Glycolax to relieve. The doctor and nurses had no answer why this was, they'd never experienced it as a side effect to the Carboplatin and VP-16 chemo I'm taking. After 3-4 weeks the symptoms (diarrhea) disappeared and I'm back to regular old constipation. I wish I could help you with the "why" of it - but at least you're not alone. Hang in there and try to stay away from any open flames. "Uncle" Doug Tacoma, WA

So sorry to hear about your Dad. I'll include you in my prayers tonight. "Uncle" Doug

Journal Excerpt Friday, June 17th God, in His infinite wisdom, has seen fit to grace me with a new and significant side-effect to the chemotherapy: flatulence. Or, to be more precise: intestinal gas. Not your everyday, run-of-the-mill, making-bubbles-in-the-bathtub, pull-my-finger variety of gas with it’s accompanying trill, much like the bleating of a small woodland animal, no, no, no. This marvel of modern intestinal distress is more closely related to the Kuwaiti oil field fires of 1991 – up close. If depicted on the History Channel it would be a grainy black and white movie of a marine on Iwo Jima, flushing Japs with his M2A2 anti-personnel flame thrower, from the Japanese point of view. . . and just as deadly. Take, for example, the tragic story of our late cat Puffy. Well, perhaps we should save that story for after the children have gone to bed. Now, apart from the obvious medical consequences of such a disorder, there is the added drawback it presents in social situations. Walking around in mixed company, or any company for that matter, while imitating a walking tuba solo, has the effect of making a wallflower out of the most hardened social butterfly. I’ve been spending more than the usual amount of quality time alone in my room. The CT scan results won’t be available until the 27th when I see Dr. Cox. Dr. Xuan is on vacation that week so they’re calling in the bullpen to go over the test results. As I’ve mentioned earlier a cancer patient follows scan results like a senior trader follows the “Big Boardâ€

Journal Excerpt: Wednesday, June 15 Well, another cycle of chemo under my belt. (What an uncomfortable place to put anything!) Dr. Xuan has decided that she would like a full-body CT scan before my next infusion to see exactly what’s going on inside of me. And then the wait for results. This is the worryin’ time, this limbo state between taking action and waiting for results. All treatment seems to work like this. It’s unfair, really. Those of us who feel the need to do something are relegated to the sidelines without being given the opportunity to carry the ball. We want so much to take action – and the best we can do is wait for results. 12-steppers seem to have a handle on this particular issue of control. The Serenity Prayer is a favorite mantra: “God, grant me the serenity to accept the things I cannot change, the power to change the things I can, and wisdom to know the difference.â€

Kate: I'm sorry that you needed to find us, but so glad you did. Here you'll find a large group of people who truly do know "how you feel". I was recently diagnosed with similar symptoms. On this forum you'll find both caregivers like yourself as well as cancer survivors like me. The disease is as scary as a disease can be - but there is hope. Here you'll find survivors with 2-3-4 and more years of being symptom free. I suggest that you learn as much about the disease and the recovery process as you can. Knowledge is truly powerful. The more you know, the less you fear the unknown. You and your mother both sound strong and committed to a positive and continuing recovery process. Use that strength now and use the support of the people in these forums. There is nothing you should be afraid to ask or say - you will find no judgements here, only support and love for both your mom and yourself. Your mother's treatment sounds like it's on the right track. My own chemo process included Carboplatin and VP-16 (standard) for 3 days on, then 18 days of rest. There will undoubtedly be side-efects. They vary greatly from person to person. I have had very little - just minor mouth sores and swollen ankles from the chemotherapy drugs. Your mother is young and strong - there is no reason that she shouldn't handle the therapy well. Please keep us informed - we will be here for you and your family every step of the way. Welcome! "Uncle" Doug Russell Tacoma, WA

Journal Excerpt: Tuesday, May 17 Started my third cycle of chemotherapy today. It’s been 60 days since the initial emergency room visit which started this journey. 61 days ago I was oblivious to any ailment other than lower back pain. My doctor says that without treatment I would have died in 6-8 weeks. Scary. What did they do, and what did they call this thing 300 tears ago? Dad or Mom were having a Kodak moment with the kids on the beach near yet to be settled Seattle – eating smoked salmon, steamed clams and corn. Tucking the kids into their bear and elk pelts, Mom turns to Dad with an amorous look in her eye, and Dad says, “Not tonight, Timid Dove, my back has been acting up.â€

Kel: That was so beautifully written and expressed. Your appreciation and love for tour mom is so evident and heart felt, that I felt that I knew you two in seconds. I lost my dad last year. His passing was so sudden, just two weeks, that I didn't really have a chance to say goodbye. You and your family seem to be handling it with all the grace and love you can, and I am sure that your mother understands and appreciates it. All my thoughts and prayers are with you and your family at this time. I only hope that I can pass with as much dignity as your mother and surrounded with as much love. Uncle Doug

Nancy: I had the same thoughts at one time going into and coming out of my first chemo. Here I was going from an occasional aspirin once in a while to taking enough narcotics to keep the 7th fleet afloat. In cases like this I've found it best to follow the advice of those who have the experience. My nurses were great. They, too, recommended staying ahead of the pain. It (the pain) will be, as was said, what it will be. If you're concerned about the addict versus dependence thinking there is great literature out there to help. In a nutshell, taking narcotics will not turn you into an addict. Yoy may become dependent and need medical supervision to control your maintenence and gradual withdrawal, but you will not become addicted in the standard meaning. Again, it depends on the type and severity of the pain. Listen to the pros. A Charge nurse once told me - if ever you needed medicinal pain relief, that time is now. She went on to say that to her quality of life was more important than anything - that whatever let you spend more quality time with loved ones and friends without the distraction of pain and discomfort, was worth all the gold in Ft. Knox. Hang in there, you have a lot of friends out here. Uncle Doug

Journal Excerpt: Monday, May 16 In some of my Journal entries I may have appeared flip when I talk about side-effects; wishing I had some, etc. . . . of course I don’t. I am blessed that I haven’t been given the early crosses to bear that many of you have had to endure. My third cycle of chemotherapy starts tomorrow at 8:40 am. The actual infusion of the chemicals seems to be the easiest to endure for me. It’s the waiting in between – the wondering if it will work – the prayers that work their way to an agnostic’s lips, asking for the tumors to die and just go away, to let me please have my life back again. I am an agnostic. I have been my whole life. Actually, truth be told, I waffle between Atheist and agnostic. That is, I don’t know – but I’m absolutely certain that I’m right. Being an agnostic is easy – I really don’t know whether there is a God in His heaven, or not; but if there is, I’ll take all the help I can get. There is a story, true or not, about W. C. Fields on his deathbed being seen to read the Bible. “You’re an atheist, Bill, why all this interest in the Bible?â€

Hi, Guys! Just a quick question. I am just now heading into my third cycle of chemo with Carboplatin and VP-16. After this last cycle, starting about a week ago, my feet and ankles started swelling up so badly I couldn't get my shoes on. No pain, just irritating. I asked the nurses and the pharmacist and they had no real answer - could be anything was their best reply. Anyone else have this problem? I've also had infusins of Neaulasta and steroid prep solutions for nausea. Doug

My apologies for being away from my keyboard for awhile. Journal Excerpt: Tuesday, May 10th About halfway into my second cycle of chemotherapy infusion, now. I’d been carrying around survivor’s guilt so long now concerning my side effects (or, lack thereof) that I thought it best to do something about it. It was becoming difficult to hold my head up in polite chemo society when the subject of side effects came up. All the other survivors in their cute little designer knit-ware; bemoaning the fact that they simply “can’t do a thing with their hairâ€

Everybody who has responded: My 84 year old mother, who insists on reading every post and reply, put it best: "Doug, these are really, really nice people! How did you find them? I cannot believe that there are so many strangers who would take the time to write such supportive things. It's almost like they were family. You really aren't alone with something like this, are you?" "No, mom", I answered, "you're not. But it seems that wherever you are, and whenever you're ready, they find you." Old Eastern saying: "When the student is ready, the teacher will come." As a Thank-you, I'm sending along a recipe for onion soup. I know, I know. But I'm sure that soon you'll be sharing it's love with others (usually, about an hour after you've eaten). It has certainly taught our family the meaning of togetherness under difficult circumstances. After all, feeding onion soup to an 84 year old can only be compared with serving chili to a baby. Confucious say . . . oh, never mind. Uncle Doug Creamy Onion Soup Outback Restaurant 2 large sweet onions; sliced and quartered 2 Tbsp butter ¼ cup Wondra flour 1 14.5 oz can chicken broth 1 tsp sage 1 10.75 oz can French onion soup 1 10.75 oz can cream of celery soup 1 10.75 oz can cream of chicken soup 1 pint (16 oz) whipping cream (or ½ and ½) 1 8 oz pkg Colby/Monterey jack grated cheese fresh ground pepper Melt butter in large soup pot. Add onions and sauté over medium heat until soft and transparent. Add sage; stir. Add flour and stir until thoroughly mixed and roux is formed. Add chicken broth all at once and continue stirring until thick and bubbly. Add cream, pepper, French onion, celery and chicken soups; stir until mixed and heated through. Blend in cheese. Serve with croutons or crusty bread. Serves 6-8 I had this soup at the Outback restaurant one night at a company dinner. It was by far the best part of the meal. I searched the internet for a ‘copycat’ recipe, and although I found several, I developed this one as a quick and easy version. Tastes very close to the real thing!

For those of you who responded to this small missive of mine on depression - thank you. I know now that many of us suffer from the same symptoms from time to time - it's nice to know that I'm at least normally depressed. As a gift to you here is the recipe for Creamy Onion Soup. I can attest to it's effectiveness, as I was seen cracking a smile and, at one indiscrete moment, letting loose with a guffaw after only two bowls. Enjoy! Creamy Onion Soup Outback Restaurant 2 large sweet onions; sliced and quartered 2 Tbsp butter ¼ cup Wondra flour 1 14.5 oz can chicken broth 1 tsp sage 1 10.75 oz can French onion soup 1 10.75 oz can cream of celery soup 1 10.75 oz can cream of chicken soup 1 pint (16 oz) whipping cream (or ½ and ½) 1 8 oz pkg Colby/Monterey jack grated cheese fresh ground pepper Melt butter in large soup pot. Add onions and sauté over medium heat until soft and transparent. Add sage; stir. Add flour and stir until thoroughly mixed and roux is formed. Add chicken broth all at once and continue stirring until thick and bubbly. Add cream, pepper, French onion, celery and chicken soups; stir until mixed and heated through. Blend in cheese. Serve with croutons or crusty bread. Serves 6-8 I had this soup at the Outback restaurant one night at a company dinner. It was by far the best part of the meal. I searched the internet for a ‘copycat’ recipe, and although I found several, I developed this one as a quick and easy version. Tastes very close to the real thing! Uncle Doug

In joining a discussion on whether it's "right" or "wrong" to continue smoking after being diagnosed with lc I received a PM from a board member who seemed more anxious to confront than comfort, to blame than balm. Without mentioning this persons name, here was my reply: Like many non-addictive personalities you seem to want all issues interpreted in either black and white, good or bad. You fail to see either the depth of the question nor the personal cost of those self-same ironies which make the choices addicts make as insane as their actions. The original question is how someone could continue to support a behavior which has proven to be so destructive to them in the past. Look up the definition of addict. All people who smoke aren't bad. Just as all people who purport to spiritualism are necessarily all good. The issue involved isn't to assign blame or guilt to someome who is suffering through the tragedy of a debilitating illness. The issue is what, for them, constitutes a mitigating moral argument which allows them to continue in addictive behavior while understanding that they, as human beings, still hold a place of worth and value in their society. How can they be an addict and still a worthwhile person? How can they not quit, now that their life is possibly forfeit? How can they do this to their loved ones? Because the choice is personal, not moral; Rational, not spurred by guilt. They make the choice which, to them, gives the most peace and comfort: to continue in behavior which, on it's face, makes no sense - but which brings a measure of peace and acceptance to a very troubled soul. They don't want to die - but that decision is no longer altogether theirs to make - but they want to hold on to a modicum of self respect. They continue to smoke because it has made them feel good in the past and it makes them feel good now. You ask me how, if I'm getting food stamps, I can still go out and buy cigarettes? That's not a question in search of an answer, that's a recrimination in search of a sinner. You ask how I can't see the irony in continuing to engage in addictive behavior when that behavior most likely is killing me? I ask you to look up the definition of addict; And remember that the definition isn't sinner. I am very sorry for any misfortune that life has laid in your path. You seem to be a mish-mash of self-righteous anger, hate and blame. This is a time in our life when most of us who have this disease are looking for help and guidance, not blame-laying and recriminations. If you truly want to help people on this board, try and remember that we are only trying to find peace, not confrontation - there are plenty of other boards out there for that. Doug Russell Tacoma, WA

I had the same question when I was first diagnosed with sclc. I'm a smoker of 40 years - who knew it was a bad idea the whole time. Undoubtedly, the smoking led directly to my contracting the disease - however my Doc said the same thing so many other Oncs say - quitting at this stage won't do any good, and might do some harm. In my case smoking is the best way I know of for relieving stress. The irony is not lost on all of us continuing smokers. The best reasons I've heard for stopping at this late stage are 1) a feeling of accomplishment if you succeed (and we all need little victories) and 2) Your lungs will clear, to some extent, which is useful in further treatment options, and 3) regaining a sense of smell and taste after so long a period can be quite a rush. In any case the decision belongs to your friend. If they're OK with it then you should make yourself OK with it also - for their sake. Uncle Doug

Journal Excerpt: Wednesday, April 27th- Tuesday, May 3rd Well, it’s been about a week. I guess I don’t owe an apology for neglecting my own Journal; but, I feel that an explanation is in order. And I don’t have one. Not really. Ok, I’ve got the “Bluesâ€

Journal Excerpt: Tuesday, April 26th I am here to tell you that I have officially become a part of the chemical family. As usual, before heading to the hospital to climb into the ring with another bag of chemo, I showered, shaved, and put on my best ‘bib and tucker’. (The ‘bib’ part comes in so handy with the catheter, the ‘tucker’ part I’ve never been able to figure out anyway.) That evening, at home, I ran my hand over my face and performed one of those visual double-takes normally reserved for silent film actors. Where the hell was my beard? For forty years I have had one of the heaviest beards in my family. (On the male side, anyway. You may have seen my Aunt Emily featured recently on a Discovery channel segment titled “Queens of the Sideshowâ€