UncleDoug Posted October 18, 2005 Share Posted October 18, 2005 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 Link to comment Share on other sites More sharing options...
kitkathi Posted October 18, 2005 Share Posted October 18, 2005 Welcome Back Uncle Doug, So glad you are back posting. Don't stay away so long next time! Hope your new chemo combo works. I can't imagine having to sit for so long. Just remember, we are all rooting you on. Glad you got to catch the "big" fish. Kathi Link to comment Share on other sites More sharing options...
Ann Posted October 18, 2005 Share Posted October 18, 2005 Uncle Doug, it is so great to be reading your posts once again. You have such a way with writing. Although I had been with my husband many times when he received radiation, your description of the process made it seem as if I was reading about it for the very first time. I just can't wait to read of your adventures in Alaska. My Dennis used to go salmon fishing every year in the Kenai Peninsula. This was truly his piece of heaven her on earth. Link to comment Share on other sites More sharing options...
Frank Lamb Posted October 18, 2005 Share Posted October 18, 2005 Uncle Doug,good to hear from you.Your way with words has an enlightening effect on our new normals as lc patients. Looking forward to your up and coming posts. Link to comment Share on other sites More sharing options...
KarHart Posted October 18, 2005 Share Posted October 18, 2005 Glad you are back. Missed your posts, keep them coming. Karen H Link to comment Share on other sites More sharing options...
Addie Posted October 18, 2005 Share Posted October 18, 2005 It's great to have you back posting, Unca Dougie. We missed you. Sounds like, in the meantime, you've been having some fun even while you've also experienced a bit of the roller coaster ride that is cancer, huh? If it makes you feel any better, I lost my lower front teeth a good three years BEFORE cancer. So far, since dx, I'm hanging on to those I have left...but there are days when I have to slurp a steak thru a straw, you know? Like right after a cleaning.... Looking forward to more of your journal. It's always a great read. Link to comment Share on other sites More sharing options...
pammie Posted October 18, 2005 Share Posted October 18, 2005 Sounds like you had a great refreshing three weeks to forget about yucky stuff and revel in fun. FUN may be the best medicine any of us can ever have prescribed. Good to hear from you. Am continuing in prayer for you. pammie Link to comment Share on other sites More sharing options...
nancy c Posted October 18, 2005 Share Posted October 18, 2005 it was great to hear from you. hang in there!! god bless,nancy c Link to comment Share on other sites More sharing options...
tnmynatt Posted October 18, 2005 Share Posted October 18, 2005 Uncle Doug, Good to hear from you and looking forward to your next posting about the trip. Take care. Link to comment Share on other sites More sharing options...
Nushka Posted October 19, 2005 Share Posted October 19, 2005 Uncle (Unkie) Doug, I had to smile when I saw your name attached to a post. I love to read your journal entries. It sounds as though you are on a real adventure with this darn cancer thing and I hope things level off soon for you. As Frank said, you put into words the "new normal" quite well. The Unkie comes from my children when they were little. They thought every person kin to them was an Unkie of some kind. They had Unkie Roy, Unkie Dan, Unkie Andy and Unkie Martha. At that point in their little lives everyone was a favorite Unkie. I give you that nickname with great affection. Glad to have you back. Nina Link to comment Share on other sites More sharing options...
gail p-m Posted October 19, 2005 Share Posted October 19, 2005 Uncle Doug I am one of those who missed your posts and I'm so glad that you're back with us!!! Not sure what your first career was but if you want a second one, take up writing. Also I was very happy to hear that you had your new teeth in place for the Alaska cruise and hopefully they helped you to put on pounds which is what cruising is all about. Anyhow, don't stay away so long next time! gail p-m Link to comment Share on other sites More sharing options...
Susan Posted October 19, 2005 Share Posted October 19, 2005 Thank you my friend- you have put big smiles on many faces- can't wait for part 2!!! Link to comment Share on other sites More sharing options...
SDianneB Posted October 19, 2005 Share Posted October 19, 2005 Great to hear from you again! Glad the Topo seems to be working for you. The study for oral Topo that I've been in has been an amazing blessing. It's not only improving things in my liver, but decreasing and eliminating all the tiny "spots" they first detected. I'll start cycle #8 of the oral Topo next week -- 25mg. over 5 days of pills, and then will wait a few weeks and have another CT scan to see how things look. My first chemo was Carboplatin and Etoposide (oral) -- so I've only had 4 IV's since all this started, and have been fortunate to have most of the drugs in pill form. I've had really good luck with them, as have others, and I hope you do well too. Di Link to comment Share on other sites More sharing options...
lindseysmom Posted October 19, 2005 Share Posted October 19, 2005 Uncle Doug, I'ts great hearing from you. You have been missed. Best Wishes, Dee Link to comment Share on other sites More sharing options...
Maryanne Posted October 20, 2005 Share Posted October 20, 2005 Finally, I was wondering what happened to you since you went to Alaska. I can't wait to read about your adventures there. I love reading your posts, like everyone says you really do have a way with words. You certainly have been on a roller coaster ride. Thinking of you so glad you posted. Maryanne Link to comment Share on other sites More sharing options...
t_beanes Posted October 25, 2005 Share Posted October 25, 2005 there you are!!!!!glad u managed to get the cruise under your belly..with all the treatment going on....thank you for feeding my head again.. T Link to comment Share on other sites More sharing options...
cindi o'h Posted October 25, 2005 Share Posted October 25, 2005 Hi Unca Doug. Glad you and your brother landed your dream fish. I think Susan may have posted a picture of your prize...I know I saw them. In the future, I am going to sling Miss J.C. over my shoulder and drag her on an Alaskan cruise. We need to hook up with a Coho too! Just love that you had done a lotta living in a short period of time. Life is good! Cindi o'h Link to comment Share on other sites More sharing options...
J.C. Posted October 25, 2005 Share Posted October 25, 2005 Uncle Doug, Always a delight to read your posts, good thing you had your pick of the fish, if ever Cindi gets there they would be rare after her fishing act. Hugs J.C. Link to comment Share on other sites More sharing options...
t_beanes Posted November 2, 2005 Share Posted November 2, 2005 we are in nov now....sorry to say that ...but as I am moving around europe i always look into this thread ,hoping to read more ...must be some kind of dependancy....hey joking ..just ..huh? just ? luv your posts...have been looking at some of berlins museums lately ....wow ..anyhow leaving regards here for you Link to comment Share on other sites More sharing options...
t_beanes Posted December 6, 2005 Share Posted December 6, 2005 its been a long time again...where are you?How are you? Regards T Link to comment Share on other sites More sharing options...
Susan Posted December 10, 2005 Share Posted December 10, 2005 Doug ???? Where are youuuuuuu????? Link to comment Share on other sites More sharing options...
t_beanes Posted December 11, 2005 Share Posted December 11, 2005 Hi Susan! I was wondering as well ..as you could read ...the last entry said he was going to post some more ..... hm ... T Link to comment Share on other sites More sharing options...
Patkid Posted December 23, 2005 Share Posted December 23, 2005 We heard from Doug this morning. I am sure he will post here soon. Love P Link to comment Share on other sites More sharing options...
t_beanes Posted December 23, 2005 Share Posted December 23, 2005 thank you so much!All the best! T Link to comment Share on other sites More sharing options...
J.C. Posted December 25, 2005 Share Posted December 25, 2005 Thank you Pat, I'm always watching for his posts and was wondering how he was. Jackie Link to comment Share on other sites More sharing options...
Recommended Posts