of course, Jay joined me for a frisbee therapy session......
Posted at 05:31 AM | Permalink | Comments (2)
My camp friends Bryan and Michelle Debbink came to visit in May. I was Bryan's camp counselor when he was a young lad and I've watched him grow up to be a great person, a good friend and a dynamite Ultimate player. We all gained another good friend when he married Michelle and brought her to camp. She fit right in our little community and I feel fortunate to have met her. Much like I did at his age, he caught "the fever" from camp, played Ultimate in college and now plays club in Michigan. It's all I can do to keep up with him at camp.
Posted at 05:52 PM | Permalink | Comments (2)
Hi all! I'm doing really well. I continue to feel stronger and more normal every day. I run. I bike. I work. I garden. When Dr. Linker recently said "we no longer want you feeling like a cancer patient," it was music to my ears. and for the most part it's true. I'm still pretty achy and I have the occasional headache but the fatigue is much better. I had a clinic visit 2 days ago and my blood levels are where they should be - just slightly below normal. Priscilla, my Nurse Practioner was so happy with the news - and that made me happy. A month ago, when my levels took a dive, Dr. Linker said not to worry, that he'd straighten things out and he has. It was good I was in San Francisco for this blood scare. It was unfortunate but it did validate my decision not shoot 3 tennis tournaments in Europe over 5 weeks. I can't imagine how the problem would have been solved from across the pond. Dr. Kaplan and NP Lisa gave me excellent advice, saying it was to early for that kind of trip. They were right. Some docs thought I should go. It was such a tough decision for me.
I started taking Methotrexate and 6-mp again 2 weeks ago and my blood levels have held well enough that they raised the Methotrexate dosage. typical. :) That's pretty much the story with cancer treatments...feeling better? good. then have some more poison. up and down. But the chemos are hardly noticible now, thankfully. I do think someday they will laugh at the poisoning-for-life techniques. But for now, I'm grateful to have these treatments. My clinic visits have gone from twice a week, to weekly, to every 2 weeks and, now, once a month. I'm stabilizing. and I like it.
I'm so behind in blog entries. so many photos to edit. stay tuned for my yosemite trip, my Georgia golf gig and tv family reunion, my adventures in pond making and bird-watching, and visits from the famous Jay Coyle and Bryan and Michelle Debbink. Also, check out The Bad Plus tunes in my audio section. I recently saw them at Yoshi's, a jazz club in Oakland and was blown away. They have a really unique sound. How about the Tom Sawyer remake? It's very tough to remake a song like that. I thought they did well.
My camp friend Margaret and my dear friend Amy recently visited. I met Amy in 1st grade. She's my oldest friend. We hung out with Gretchen's family during the visit. I met Gretchen through Amy when we were both on the 11th floor of UCSF. Gretchen is Amy's Mom's Boyfriend's Son's Wife. Did you follow that? Amy is Gretchen's Husbund's Dad's Girlfriend's Daughter. Small world, huh? Gretchen is doing very well fighting Lymphoma while I've been fighting Leukemia. We also coincidently finished up with our hospital stays at about the same time. I really enjoyed seeing Amy and her mom Linda again and meeting Gretchen's family as well. We all had a great time and laughed a lot.
Posted at 11:05 PM | Permalink | Comments (4)
First up, in March came Frank Colvin and Doug Christy, my two college buddies, roommates, and Ultimate teammates. They don't make nicer guys than these two. I've had a lot of fun with them over the years. Thanks for coming to see me guys!
Posted at 08:48 PM | Permalink | Comments (6)
I had a clinic visit yesterday. My white blood cells are back up (after the nuelasta booster) so I'm no longer nuetrapenic and I will begin maintenance therapy again next week. I have a week to be relatively chemical free. woo-hoo! I found out that the head and body aches I have been feeling are due to nuelasta and were a sign that the shot was working, promoting wbc growth. I felt much better upon hearing this as the pain was making me paronoid. I'm feeling stronger every day- almost normal. Beth and I are taking few days to explore Yosemite National Park. I'm excited to be out in nature for awhile. We are leaving presently. I'll report back soon. much love, Chris
Posted at 09:02 AM | Permalink | Comments (4)
I went to my clinic appt. yesterday and received good and bad news. The good news is that my bone marrow biopsy and lumbar puncture tests came back negative - no leukemia cells were found. But, for some reason, my white blood cell count was very low - something Doctor Linker could not explain. Sluggish bone marrow (that produces all blood cells) from months of chemotherapy was one possibility. Doctor Linker had me stop taking my 6-mp chemotherapy and gave me a shot to help boost my cell count. He said could not explain the sudden drop in WBC's. You hate hearing that. I'll go to the clinic again early next week to evaluate the situation. Hopefully my WBC's will recover and we can get back on with the chemo. This kind of stuff is exactly why I didn't go do eurotennis (normally I would be enjoying some Eastern European country right now - in between tennis gigs). My NP Lisa Ramsey and Dr. Kaplan were right. Early in the Maintainence phase of therapy ajdustments are likely to be made. I'm glad I'm here and not in Romainia!
So now I am pretty nuetrapenic having very little nuetraphils (a type of wbc) to fight infection. The degree of caution one should exhibit is highly debatable. At times, in the past I was instructed to stay in the apt., where a mask, avoid sick folks, eat only highly proccessed foods, etc. Linker is on the liberal side, saying very little lifestyle change is needed. He even said I should go to work as scheduled at my job at Hortica, a plant nursery, later today. "It's time for you to go back to work" he said. So I will do that and avoid infections as best I can. I'll have antibacterial lotions nearby and I'm taking pills for that as well. The big thing is, like before, I'm on fever watch with one of 101 degrees meaning a trip to the ER.
So there it is - a mixed review. Clean tests and unexplained blood counts. I will go about my life and try not to worry too much about it. I just worked my first tv job earlier - in Atlanta. I had a blast seeing old friends and running a camera again. I'll tell you more about it soon but now I'm off to Hortica for an 8 hour shift amongst the plants. I am feeling stronger every day but I do have some lingering head issues from the LP 2 weeks ago - congestion and headache. Not too bad though. I'll talk to y'all again soon.
Posted at 08:02 AM | Permalink | Comments (4)
My friend Brenda passed away recently. She was a 36 year old wife and mother of 2 children. She was a great athlete running marathons and triathalons. She was diagnosed with AML (acute myeloid leukemia) 2 years ago. She had a bone marrow transplant and enjoyed a year of good health before she relapsed. After her 2nd transplant, graft vs host disease grew in her lungs, a rare situation. Now, after her long fight she can finally rest.
This past January I met this wonderful woman during a stay in the hospital. I was feeling pretty sick at the time. To that point I had not been very social in the hospital preferring to suffer in my room away from other patients. Brenda would pass my room while walking the halls and often she would smile and wave. Eventually I would meet her and get to know this special person. She got me out of my room where we would have great conversations about our lives with and without cancer. Being a more experienced patient, she taught me a lot. She was a positive thinking fighter. She cherished every day and was never bitter about her struggles. She was a true lover of life and thinking of her now makes me smile. She would have wanted that. With the help of her influence, I made it through this tough period and I gained a great friend. I will not let that go.
As with Nema, I thought Brenda and I would have many years to remember our shared experiences together. Now, I know I will carry her with me in my heart forever.
Brenda, I will remember your courage, your strength, your kindness, and your loving spirit. I will think of you when times are tough. I will think of you when I need to smile. Please rest now. You deserve it for all the love you've spread. Thank you for entering my life. I love you.
Brenda is wearing the red shirt.
Posted at 10:30 PM | Permalink | Comments (5)
Things are going very well for me this month. I've started working part-time at Hortica, a plant store near 18th and Castro. I've already learned a bunch in my brief tenure. I have entertained old friends and met some new ones. Beth and I have walked to and explored a few new neighborhoods like Potrero Hill, Noe Valley and Glen Park while contining to visit old haunts like Delores Park, Progressive Grounds (my coffeeshop) and Samovar (a teahouse) in the Castro. I feel stronger every day but I am still sore in my muscles and joints and sometimes I get tired. I'm told this is normal after 6 months of chemotherapy. At this point, I'm just walking a bunch but I hope to begin a yoga class in the next fews days and I just bought a pair of running shoes. I'm "gonna take it up a notch!" Because I feel stronger, I have booked TV jobs in May and June. I'm enjoying an influx of hairgrowth all over my body which is nice as the smooth look is a bit passe'. You can really only pull that look off for 6 months or so before a change is needed. My "chemo brain" has improved as my thinking has gotten a bit crisper. I play a lot of on-line chess to help with this (gameknot.com - I'm cboring - bring it!). I'm basically starting to live a relatively relaxed, "normal" life and I'm loving it.
I went to the clinic last thursday for a Bone Marrow Biopsy and a Lumbar Puncture. Both were to make sure I am still in remission. Based on how I feel, I am confident the leukemia cells are still gone. I will report the results as soon as I know them. LP's are funny things. Their side-effects are varied and inconsistent. This was my 6th (and last) LP. I have a mild "spinal tap" headache today- 3 days later. My brain feels a bit pressured and "floaty". I've found percocet (oxycodone + tylenol) works best on the LP headache and it has helped me much today. It's the first time I've needed pain killers in weeks. Strange that the distinct headache took 3 days to show up. My last was strange also with good and bad days for about a week.
Nurse Practioner Cheryl performed the preocedures (in the absence of Priscilla, my regular LP - enjoy your vacation Priscilla!)) and they were quick and painless. I was quite impressed. She gave me a lot of much appreciated advice about my 2 years of aftercare. The biggest point was that my immune system will not be at full strength so I must be careful to avoid germs and infection when possible. I will take a antibacterial (Septra) on weekends to help with this. She said 1 alcoholic beverage a day is ok but no more. But I will continue to abstain since I figure my liver could use a break after all that chemo. and because I will continue to take the chemos 6-mp and Methotrexate for this whole period (thus the compromised immune system). I've been taking 6-mp for weeks now and it's been going really well, side-effectwise. Much better than when I took a higher dosage months ago. According to Cheryl, these 2 procedures would be my last for a long time. My conversation with her left me even more confident that my future looks bright and that the worst is over. Thank you, Cheryl, for boosting my confidence whilst pounding on and stapping me in my back! Seriously, I really enjoyed our conversation.
I will probably write blog entries a bit less frequently but I promise to report any significant events/reflections in my continued recovery and also I'll update things from time to time. If I am silent on my blog just know that it's because I'm enjoyng my hobbies, my work and my life.
I want to thank everyone for such loving support on the blog over the past few months. You got me through the toughest period I've had in my life and I am very grateful. I've really enjoyed reading everyone's comments and being reminded that I wasn't alone in my fight. It's been great to become reaquainted with old friends and family. After starting the blog at the request of my Mom and Sister Jenny, I was pleasantly surprised to see so many that wanted to share my experiences. To the many photographers who contributed, know that at least one nurse in Australia has asked me to use them for teaching purposes. Apparently, photos of basic nursing procedures in Oncology are hard to find. So your work is helping others! I must admit, one nice part about getting sick has been all the fun we've had on this blog. Thanks again everyone.
Lastly, I want to send a big hug and my love to Bryan Debbink and his wife Michelle. My camp friends are going through their own tough times as Bryan recently had a brain tumor removed and he is now undergoing radiation and chemotherapy. The surgery was successful and I'm told he is doing well in his treatment. I know how tough he is from our many match-ups on our camp Ultimate field. He will work over that tumor like he has worked over me so many times! I can't help note the irony that this past July we covered each other on the field while we each had unknown serious medical conditions. Bryan, I can't wait to play with you again as healthy men. Let's agree to a year from this July (I don't think this year is a good idea...unless we agree to walk!). I'm thinking of You and Michelle constantly. Get well soon.
over the next couple days I hope to load many pictures.
Posted at 09:18 PM | Permalink | Comments (2)
Here's some photo's from my last hospital stay. Nurses Karri, Marie, Ilona, and Karen and other's took great care of me despite my "difficult" status. They got me through some tough times. I am so grateful. I know I will have to drop by to say hello every now and then. Nevertheless, I will miss them. Thank you all so much.
Dr. Kaplan (blue shirt) came to the ER when I was first diagnosed and has been there for me every step of the way. He always had time to address my many concerns or just give me a friendly nod when I needed it. and LP Lisa Ramsey (green shirt) bore the brunt of my many anxieties. I looked forward to her daily visits. She answered my plethera of questions, gave me tons of advice and genuinely cared how I was doing. I always felt better after seeing her. Without these two, I think I would have had a much harder experience. Thank You Lisa annd Dr. Kaplan. You are my ll long MVP's.
The UCSF LL Long Graduate!
Nurse Agnes was often called in for my IV as I became a "tough stick". The Woman is good.....and so sassy!
Angela, Sonia, and Robert are part of the very friendly ll long team.
Nurse Sharyn runs marathons in 3 hours 16 minutes. She was about to run the Boston soon after this. She's possibly the sweetest nurse on 11 long.
Nurse Laura is one of the nicest nurses on 11 long. always happy to have her services...
Nurse Mike has the sweet traveling nurse gig. and he's a good stick as well.
I had Nurse Karen as my night nurse late in my patient tenure. Glad to have met you, Karen. It was a pleasure.
I never had Nurse Candy unfortunately. I think I scared her...although it's not evident here.
Nurse Melissa, what else can I say? I was SO wrong..... my apologies.... :)
You are always in good hands with Nurse Ilona. So efficient and knowledgable. Thanks for making my last couple nights a pleasure, Ilona.
Nurse Kristen was one of my earliest Nurses (when I was a raw pateint, floating, with little direction..). She quickly became one of my favorites and I looked forward to days with her as my nurse. She is super sweet and very funny (these photos crack me up!). She keeps me laughing. Thanks for everything Kristen. I will miss you. Maybe I will see you in that far off place called the Marina someday.
Nurse Marcus and His girlfriend Nurse Amy are good people. Glad to meet you two.
I met Steve late in my hospital stays but I'm glad I did. Nobody is in better shape than this man as he walks the halls enough for everyone. He's a good guy and I will miss him. all the best, Steve. look me up!
David was my Hip Hop roommate. We would bob our heads to old school and Hiero all day long.
My only shot of Nurse Bethany, a sweetie!
Nurse Karen, my hippie, biker nurse. I loved her straight, experienced talk. Karen knows the ropes and helped me often over the months. She the kind of nurse you could also go to Burning Man with! I'll miss you, Karen. Thank You.
Posted at 07:14 PM | Permalink | Comments (0)
Andy and Kendra made a trip back to San Francisco. My camp friends were married last fall and look like very happy newlyweds, as you can see from the photos. Our big trip together was to Pt. Reyes, a couple hours north by car. The lighthouse area is the 2nd windiest in the country and cloudiest spot on the west coast. It started out cloudy and windy for us and then the clouds miraculously parted and the wind stopped upon our arrival. The wilderness areas are big and would take a few days to explore. There are northern elephant seals, harbor Seals, california sea lions, great white sharks, grey whales, deer, elk, mountain lions, bobcats, foxes and tons of birds to observe. I'm very happy to have finally visited this nice spot.
Posted at 07:13 PM | Permalink | Comments (0)