CB's Acute Lymphoblastic Leukemia Blog (ALL)

06/16/2007

Jay Coyle brings me some Wilmington, NC Spirit

My good friend Jay Coyle flew across the country to visit his sister, Parks, her husbund, Ed and moi. Jay is a great Ultimate player and we played together for a long time, most recently on a Master team named Hoss. Jay is mister consistency on offense, rarely turns the disc over, and is not afraid to go or throw long which helped create some of the excitement that characterized our teams. He is also known as the downtown ambassador of Wilmington, where he knows everyone and never pays full price. You don't know intensity until you've played latenight foosball with Jay - especially after a pint of guinness and a shot of yeager. It's always a pleasure seeing Jay Coyle.

Jay Coyle and I 2

Jay, Church Mural

Jay and I Wild Things

Jay and I KISS Pandas

Jay and I Pond

Jay,Parks and I

Jay,Ed,and I

I went to a nice gathering at Parks and Ed's apt. Ed is fighting cancer as well. We had much to talk about. I wish him the best in his fight. He has a strong personality, quick wit and great spirit - all the attributes he needs to beat it.

of course, Jay joined me for a frisbee therapy session......

Posted at 05:31 AM | Permalink | Comments (2)

06/13/2007

May brings Bryan and Michelle Debbink and friends....

Bryan,Michelle, Beth, and I

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.

This past year was interesting as we both had serious illnesses unbeknownst to us as we covered each other. Doctors found a brain tumor in Bryan's head a few months ago. They quickly removed it and now he's undergoing radiation and chemotherapy to clear any lingering cancer cells. As you can tell from these photos, he's doing great and is recovering well from his procedures. And, as usual, I still struggled to keep up with him as we threw the frisbee at Delores Park. :)

I appreciate you coming by, Bryan and Michelle. I enjoyed meeting your friends. I hope we can throw again soon....

Delores View 1

Delores View 2

Bryan,Michelle & Friends

Posted at 05:52 PM | Permalink | Comments (2)

05/31/2007

More friends visit, a good checkup and,..yes.., more murals...

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.

Don and Gretchen's Aunt

I like this shot of Gretchen. She's resting in the solarium at UCSF.

Margaret 1

Margaret 2

This is my friend, Margaret. She's very funny and a lot of fun to be around. She stopped by with some of our regular characters.

Rachel and I

Marc M

Diana

Rachel,Beth,CB,Margaret

Margaret and I

And, of course I had to take Amy to see the murals....

These women are Tina Modotti, Frida Kahlo, Kathe Kollwitz, and Elizabeth Catlett

Balmy RIP

Balmy RIP Iraqi Child

Posted at 11:05 PM | Permalink | Comments (4)

05/15/2007

I got by with a little help from my friends...

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!

The Colvinator

Doug and I Delores Park

After Delores Park, we walked to Buena Vista Park thru the Buena Vista neighborhood.

Buena Vista Doug 2

Buena Vista Doug

Buena Vista Doug and I

Buena Vista House 2

Buena Vista House

This is one of Beth's favorite houses in SF. Can you say "Money"? The views above with Doug are from the same corner - Duboce and Buena Vista Ave East.

Buena Vista Park D and B

Buena Vista Park Pug 1

Buena Vista Park Park 2

How funny do Pug's look? They look like they mashed their face after running into a wall.

Earlier we stopped by the Castro...

Castro flag 1

Castro Flag 2

Castro Flag 3

And even earlier, Clarion Alley....

Clarion St. Beth and Doug

And even earlier we stopped by the Women's Building, on 18th between Guererro and Valencia. It's a pretty amazing mural. not sure what happens in this building but I would LOVE to find out. :)

Doug and his wife, Diana, another old friend, just had baby: Trevor Christy, aka "T-Bone" (Doug's another die hard Seinfeld fan)

Trevor "T-Bone" Christy

straight outta womb, like W.B. 4-1 - Welcome Son! I can hear it now. "yo T-Bone". so good.....

Doug was here briefly but Frank was here a few days and we made the most of it. We saw many San Fran sights. Frank was my original roommate in the dorms freshman year. "The Man" threw us together and I'm a lucky man because of it. We roomed together almost whole way thru school. We had so much fun together. He's lives in New Jersey and is a kindergarden teacher and principal-in-training. My friend Joanne is his lovely wife and they have three children. Here's their latest: Frank Michael Colvin V

Frank Michael Colvin V

First, I had to take him to Delores Park.

Delores Park Frank and I 1

Delores Park Frank and I 2

Frank dusted of his game, easily breaking the mark of "Random Frisbee Dog."

Beth can still fire that flick...

Dog Frisbee 2

This is doggy torture - he never actually gets the frisbee. and yet he seems so happy...

These disc throw sessions I've had with various friends I'll always remember. My first activity in months, it's been both joy and pain.

We also went to Telegraph Hill, a great neighborhood on a steep hill. Some houses are only accessible by wooden steps and footpaths. It has great views. and it's home to the world famous "Parrots of Telegraph Hill," subjects of movies (well, 1 anyway) and books. They have become a tourist attraction and are often in the news. Recently, a law was passed against the public feeding them. The argument was that it was hurting their indpendent survival. Beth and I have seen them pretty close before but this day they just flew overhead. still very cool...

Cherry-Headed Conures

They are Cherry-Headed Conures or Red-Masked Parakeets depending on if you believe the internet or the newspaper. Do I hear a birder? Delores Park has it's own flock of parrots - the Canary-winged (or yellow-chevroned) parakeets. Some nest in the Palm tree in the middle of the park. You'll hear 'em before you see 'em.

Telegraph Hill Frank and I

Telegraph Hill 1

Telegraph Hill House

Telegraph Hill B and F

Telegraph Hill Bay Bridge

Frank & I Telegraph Hill

Yes, that IS a mustache. Look, Frank doesn't know what to think. Who says Gays, Seniors, adult film stars, Cops and Dictators (think about it...) are the only ones who can sport them? I actually may qualify for the Seniors by the way my body feels. The upper lip hair was the first hair to grow back. It was very soft. The mustache was put to rest when the beard came in. It was a tribute to my father, Tom.

Telegraph Hill Coit Tower

Coit Tower sit atop Telegraph Hill. It has tremendous views in all directions.

Washington Square wide

Joe Dimaggio and Marilyn Monroe married in this Catholic church by Washington Square. Many Asian-Americans do their Tai Chi in the square. Mama's, one of the best breakfasts in town, is right there as well.

Washington Square

Washington Square is in North Beach, the Italian neighborhood.

Treasure Island

The Bay

UCSF Med. center upper left

My Home away from Home. I do miss it sometimes.... I return for clinic visits and I will be visiting the hospital to say hello sometimes. Those people did so much for me.

Chinatown Jackson

Chinatown 1

and, of course, we went to Chinatown, the city within the city.

Chinatown 2

Chinatown 3

Chinatown Coctails

Chinatown Budda Munchies

Chinatown Church

Chinatown Flags 1

Chinatown Wood Sculpture

Chinatown Frank and Beth

Chinatown B & I

Chinatown cb 1

Chinatown cb 2

Beth captures my Chinatown Terminator look.

Posted at 08:48 PM | Permalink | Comments (6)

05/08/2007

Back on Track

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)

05/04/2007

A Mixed Report

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)

04/22/2007

Brenda, your Love and Spirit will endure forever....

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, Gretchen and I

Brenda is wearing the red shirt.

Posted at 10:30 PM | Permalink | Comments (5)

April....my month of "Normalization"...

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)

Pictures from my LAST Hospital Stay

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.

My Team

My Nurses surprised me with a UCSF Alumni tee-shirt. It was so sweet of them. Every time I wear it I'll remember that each of them had a part in saving my life. I'll never forget them. Thank You everyone!

The A Team

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.

Nurse Agnes and LP Lisa

Dr. Kaplan aka "the Man"

The Approach

Ll Floor Alumni

The UCSF LL Long Graduate!

Nurse Agnes and I

Nurse Agnes was often called in for my IV as I became a "tough stick". The Woman is good.....and so sassy!

Nurse Agnes

Nurse Karri w: Last Induction Chemo

I was fortunate to draw Nurse Karri as my last Nurse. She makes it a pleasure to be patient. I loved chatting with her. and I'm honored to be her first stick. Thanks Carrie! I enjoyed our final hours together.

Nurse Karri and last Methotrexate Infusion

Nurse Karri and Robert

Angela

Sonia

Angela, Sonia, and Robert are part of the very friendly ll long team.

Nurse Sharyn 1

Nurse Sharyn 2

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 Karri and Doug

Nurses Karri and Laura

Nurse Laura is one of the nicest nurses on 11 long. always happy to have her services...

Nurse Mike

Nurse Mike has the sweet traveling nurse gig. and he's a good stick as well.

Nurse Karen and I

I had Nurse Karen as my night nurse late in my patient tenure. Glad to have met you, Karen. It was a pleasure.

Nurse Candy

I never had Nurse Candy unfortunately. I think I scared her...although it's not evident here.

Nurse Melissa 1

Nurse Melissa 2

Nurse Melissa, what else can I say? I was SO wrong..... my apologies.... :)

Nurse Ilona 1

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 1

Nurse Kristen 2

Nurse Kristen 3

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.

Nurses Kristen, Marie and Marcus

Nurse Marcus

Nurse Marcus and His girlfriend Nurse Amy are good people. Glad to meet you two.

Nurse Marie

Nurse Marie 2

Nurse Marie is a great nurse and a pleasure to talk with. Here, she is getting ready to destroy a beeping IV pole. I enjoyed our many chats which always seemed to fall back on her first love - Music. She is a total clubbing and live music person. I think she must be in the presence of a band every 48 hours or she goes through withdrawal. Thanks for taking such good care of me, Marie!

Steve

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 Montalbo 1

David was my Hip Hop roommate. We would bob our heads to old school and Hiero all day long.

Nurses Mellisa and Bethany

My only shot of Nurse Bethany, a sweetie!

Nurse Karen

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.

Nurses Karen and Deb 3

Nurse Deb is the matriarch. If Deb is your nurse you know things are going to get DONE - and well. She's experienced and you feel very safe in her hands. Thanks, Deb.

Nurses Karen and Deb 4

Nurses Karen and Deb 2

I love this picture. Deb is mysterious and Karen's just silly!

Gretchen

Gretchen Is a friend of a friend who became my friend when we both landed on ll Long. We got to know each other during times of mutual suffering. I'm happy that we are both out of the hospital, healthy and in touch. She's my special cancer friend.

All business

All fun

Nurse Dana (in white) was my very first nurse. She took care of Beth and I when we arrived upset, in the middle of the night. We were so grateful. A difficult night was made much easier by Dana. Thank You

Fun Nurses

Three very sweet nurses. I miss them already. Nurse Michelle, in the Dr. Suess jammies, is a riot and kept me laughing during her couple days as my nurse.

Sue

I must admit I'm note exactly sure what Sue does but I know she was a big help to me when I was having insurance problems. Thanks, Sue.

Posted at 07:14 PM | Permalink | Comments (0)

Point Reyes w/ Andy and Kendra!

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.