cured

Dr Guerry is my ENT, the guy who suspected cancer and who rushed through my biopsy after botching same twice due to sampling errors. He is a genial man and a good Dr and I appreciate his thoughtfulness and diligence. I emailed him back and let him know I'd follow up with the blood work to follow the thyroid (possibly damaged due to rads and chemo) when the champagne has left my system.

How do I feel? Like I just finished a long book. I feel like everything that has been on hold can continue now in the sort of normal way we all go about our business when we know we've just ducked a low bridge or bullet.

I am ever so grateful for all the thoughts and prayers and jokes and love through this trip. I am different in many ways but also the same. My life is qualitatively and quantitatively better than it was even though the unfortunate scars from treatment will likely be with me until the end of my days. I'll take the trade.

I can now start a new book and enjoy the details with a fresh perspective on the quality of things and a passion for each and every breath. It sounds like hyperbole, but I can assure you it is not.

Best,

Michael

It was roughly a year ago when I first got scared I had cancer. My first of many breakdowns happened at Sonoma State when I was rushing to a meeting with Dr Madathil but instead found myself in the office of Stephanie, the department super admin and every counseling graduate student's mom.

I walked into her office and she took one look at me and said, "What's wrong?" I cried immediately and she took me in her arms. It was the beginning of my journey.

12 months, many breakdowns, and a river of tears later I again found myself in Stephanie's office with important news. This time we cried for happy.

I can swallow. It hurts a lot, but I can swallow with gusto. Tonight I had chocolate mousse Claire picked up at WF. It was nice. My first "meal" since March was three bites of mashed potatoes last Thursday.

Dr. Deepak Gurushanthaiah, a.k.a. Dr G, a.k.a. the Dude, the great surgeon who did such a nice job on what is referred to as the "gross disease" - the only evidence that I had cancer was in those 7 lymph nodes he removed in January - met me again in the ambulatory OR room in Oakland Kaiser to restore the opening to my esophagus. According to him I had no lumen (the open area of the esophagus). He said he saw that the tissue had scarred over due to radiation and chemotherapy damage. The tissue had attached to the back of my vocal chord box. He said he "tore it open" and that's certainly how it feels.

Of note was the energy in the OR. Assisting was Dr Boyd, a.k.a. Dr Smiley, who also assisted in the January surgery. The best description of the energy was silly, in particular Dr G was silly.

When you enter the hospital there are several identity checks that the staff do to ensure the patient and procedure are proper. This includes asking the same questions (name, DOB, type of procedure, etc.) in the OR. Dr G made it into theater.

He had the team gather around me and said, "We are gathered here today for who?" and he looks at me with huge eyes and I respond my name and the he says "and he is how old ..." and so on. It was, by far, the best Dr and hospital related experience I've ever had from intake to discharge. Truly an amazing day.

I'm taking appointments for breakfast, lunch, and dinner. Please let me know when and where you are available and we'll meet up to toast our friendship and encourage my esophagus to relent on its stricture producing ability.

This experience has given me a perspective on eating in general. I was never in danger of starvation because I had the g tube, but I was starving for the experience of the process of eating. I watched people eat and realized that eating was far more than food for the body. It was also food for the mind as well as the spirit. The process of eating fuels imagination and encourages human connection, binding us together, in my experience, like no other ritual.

This Thanksgiving will be, for me, a true blessing not because I can eat, but because I can eat with my family and friends in a manner befitting our kind. For that I am immensely grateful.

This is a long time in coming and I'm sorry for the absence. Thanks for the reminders to keep the interested informed.

I've been very busy. Taxes, SSDI, housework, the band (played our first bar gig in San Francisco on the 10th), and my internship have all taken turns day-to-day to grab my time and attention. I am living and very happy with being able to say that. The recovery from treatment is still slow going but I figure I am more than 80% back. I do everything I did before and have added cycling a couple times a week to the routine. Every day I feel stronger and happier.

I do, however, have a side effect from the treatment that is a bit of a hassle but nothing I can't deal with. My esophagus is completely closed. I cannot swallow even my own spit nor can I burp. While a barium swallow in August confirmed the closure, it also confirmed that the swallowing structures are intact and working perfectly. That is very good news.

I have a date with Dr G (same Dr who did my surgery in January) for an esophageal dilation. It is considered major surgery and I'll be under general anesthesia. Dr G figures it may not work the first time and it may need to be repeated a few times before they decide it wont open any more. He also figures that a stricture the likes of mine is a poor prognostic indicator for returning to normal eating - it is likely I will never again be able to swallow solid food adding, "I think you'll have that coffee, but probably not the steak." Being alive is the most important aspect of all of this. If I have to choke down smoothies the rest of my life, at least I'll have the rest of my life to learn to enjoy it. As the Irish might say 'tháinig mé slán' which in English means 'I came safely through'.

In the back of my mind is the question of a tumor as the blocking agent. Dr G says that's unlikely because of my awesome PET/CT scan in June, but added he wont know for sure until he gets in there and looks around and takes some biopsies. Fingers crossed!

In the meantime I have worked for the last month to open an SOS Counseling Services (my Santa Rosa based internship) office in Petaluma. I am happy to report we have an office! It is at 405 East D Street in the 'historic' Burdell Building (photo to come). I am busily getting furniture together and business cards and telephone and other stuff. I will be working with my two colleagues and good friends Noah and Lisa, supervised by the very amazing Dr Mark Doolittle, and together we'll start seeing clients by Nov 1. We're very excited to be bringing sliding-scale counseling to the very needy in Petaluma.

The kids are doing very well, each experiencing growing pains of different types. Claire is still amazing, working way too hard yet still can laugh and smile. We are looking forward to our long overdue return to Ireland in the summer and all the hugs and kisses that await.

Thanks for the continued thoughts and prayers for me and my family.

Best,

Micheál

PS - If you're around on the 16th The Beets play the Petaluma Farmer's Market (in Walnut Park, 4th and Petaluma Blvd) from 2pm to 5pm. It is our last scheduled gig this year.

I toyed around with toying around with anyone who is interested in this news but decided that I am too grateful for all the amazing people in my life who have gone out of their way to tell and show me they care to mess around like that.

Dr "Hee Hee" Lee, Doc Nuke 'Em, the radiation oncologist called and said of Monday's PET/CT scan "everything looks fine, there's no abnormal uptake anywhere, see you on your next scheduled visit". In other words there is no evidence of disease. It looks like they got it all.

I just got off the phone with #1 son and he said "That makes it official, right? You're a cancer survivor!" I guess so.

I am overwhelmed. I don't really know how to feel. It seems like I've been without good news for such a long time that I can hardly believe it.

Now it will be a series of PET/CT scans as part of follow up for a few years until the 5-year mark when they claim you are a "long term survivor" which doesn't say much about statistics. But, this is definitely good news and I am very happy to be able to share it with whoever wants to know.

Meaning of word w00t from Wikipedia:

The term w00t is a slang interjection used to express happiness or excitement, usually over the Internet. The expression is most popular on forums, USENET posts, multiplayer computer games (especially first person shooters), IRC chats, and instant messages, though use on the World Wide Web is by no means uncommon.

Speaking of which, many of you responded when we opened our SOS (Support our Students) non-profit psychotherapy office in Santa Rosa. Now that I am just about ready to head back to work I am excited to announce that we are moving forward with trying to open an office in Petaluma where I will continue my internship.

SOS (www.soscounseling.org) is a 501(c)(3) non-profit agency which began in 1991 and has developed into a highly awarded collaboration with the Sonoma State Counseling Department and its graduate training clinic, Santa Rosa Rotary, Santa Rosa and Sonoma County Schools, local foundations, and many other community supporters.

Our mission is to help students and their families find personal, academic, and social success. We provide free counseling services to schools and a low fee/sliding scale to the community.

SOS Counseling Services are available to people of all ages - adults, couples, families, children, adolescents, and groups. Our service provides Spanish and ASL counseling.

We are looking for funding, office space, and, eventually, furniture. We are hoping to find donated space in an existing office that the lessee or owner would allow us to occupy as a tax write off. We need one office approximately 200 sq. ft., but would love that plus a larger room for families and groups. We'll consider anything to get our services to the very needy in Petaluma.

If you have contacts in Sonoma County who might be interested in supporting or wish to donate to our push to provide free and sliding scale mental health services to south Sonoma County, please drop me an email (michael@soscounseling.org) or call me on 707 799 9500.

Best,

Michael Morris, MFT Intern

As a result of my my growing availability around here, Claire has been forced to focus her attention more on her job. It's a good thing I guess, putting the pressure on me to step up.

I have a PET/CT scan on the 28th that will determine if they got it all, so it's my first major milestone, post treatment (fingers crossed!).

I still have problems with my throat. talking for even a short time is difficult, painful, and tiring, so I'm still not too good for phone calls. Swallowing is still a problem as lack of moisture combined with thick, rubbery mucus make everything difficult, sometimes very painful. It feels like I've plateaued at this place this week, with no real improvement.

I have less mucus, and that's good, but it's still a problem.

I hope everyone is doing great. I am trying to decide what team to support for the World Cup. Cheering for the US feels too nationalistic and cheering for Cameroon too chic. I've decided to support Uruguay because it's probably the most interesting name for a country and comes from an Indian term meaning “river of the painted birds” which sounds nice.

Best,

Mick

I was IM-ing with Dr Pat, Lizard Man, the other day and frankly admitted that I felt like I was trending toward the positive. I was a little shocked at my admission because I have become accustomed to the same old line "can't talk, feel like shit". Well the "can't talk" bit is still there, but the "feel like shit" is now fleeting. There are days I feel more like gum on the sidewalk or a cigarette butt, which is far better than feeling like shit IMHO.

I am feeling even better today, like I have turned a corner. The treatment for what I had (head and neck cancer, occult tumor) is so brutal, maybe the worst treatment say my Drs, that recovery is often very slow, painful, and depressing. It has been all that for me, but today I feel pretty good.

Yesterday I met with the radiation Dr and he wanted to look down my throat with his scope which is really not very nice but I had to oblige him. He was looking for a few things: general condition of the mucosa, quality of the secretions, amount and quality of sores, constriction, and lastly but not least-ly any evidence of disease, also known as recurrence.

He couldn't quite get it down far enough to see much other than secretions, so he gave up but added, rather nonchalantly I would add, "well, you're not going to have a recurrence anyway".

"What?" I managed. It was a shock to hear that in that moment. The utterance was so unexpected, yet as the words and meaning settled into my being, I was relieved - an odd feeling these days.

He swiftly added the common caveat, "you never really know about these things" but then said again, with confidence and certainty, "you're not going to have a recurrence". I think time stopped for a few moments as that sunk in. Oh, yeah, this could come back!

Extrapolating the data, there is about a 20% recurrence rate for head and neck cancer so for him to say that with so much confidence, I don't know, maybe gave me confidence? Turning it around, it means there is an 80% chance I will not have a recurrence and those are pretty good odds. So I continue to trend toward the positive.

The Dodgers in first doesn't hurt either.

Some thank yous:

There are scores of people to thank with all earnestness and humility. From Massachusetts to West Cork to London to Hong Kong to Petaluma my life has been filled with the most loving thoughts for my well being. While being the sort of non-believing kind, I nonetheless feel blessed far beyond what I deserve and incapable of communicating what it means to me to have so many care so much. All of you have touched me deeply, in the best place in my heart and I do not rightly know how to thank you all for your continued wishes.

Thank you so very much to (in no particular order) Liam "a card a week" Casey, Joe Park, Eleanor Welham, Paul Gribben (justwrite.us London), Declan, Suzy and all the McCarthy's, Tess my wonderful mother-in-law, Noah the gift that keeps on giving, Mark "activate the Omega 13" Doolittle, Diana Drips, PJ the eternal light of lights, Esin, Tricia Burt, Susan Hazy, Mike V, Mike D, Kaleena, Scott H, Chris Arteberry, Heidi F, Claire's staff from the Americas, Tony Mac (how's the craic?), cousin Julie, Amber, Angela Garvin, Tom and Claudine merci boucoup!, Julia and Martin, the Thursday morning supervision group Lisa and Judy (first with flowers!) and Myra, Drs Hill and Shulman, my brother Ron and Sue, my sister Sherry Fisher and all the Ohio gang, Brain and Paula, Kevin and Zoe, the amazing Holly Hamm, Betty and Bette, Nina and Brian, my brother Dr Pat Lizard Man and Brenda, Mom, Dr Low at Capella University, my brother Yrag "I drove from Hollister to see you for 2 hours and it was worth it because I beat you at cribbage" and Patty, Candy from Gualala and her dog, my brother Bob and Colleen, Joel and Courtney, Rose Kruger, Meaghan, Dona Shine, my best buddy Jeanine and all the Beets, Mary Alice and Maribeth, Nathanial and Jeanette, Stephanie and Eric, Allison, Finghín and Hannah, Dean Tyler Morris the brilliant one, chef Caroline, Maayan, Shugri, Bobbie, Jody and Phil, SOS Willits and SOS Santa Rosa, Diana Harris, Tamara Lemesh, Michelle, Marisa, Lori, Martine Lappe, Patrick and Michael, The Freemans, Rachel and Adam, Adriel, the much loved and missed Kelly McCarthy, cousins Andy and Becky, Carolynn, my sweetheart niece Donna (hang in there kid) and Chad, Heidi and Nick and Gabby, Mark and Holly, John Downs, Jude, Karen and Randy, Robo, the Hopes, Linda Martel (I hope you feel better soon), the beautiful Lori Annoreno, Paul and Linda Conneally, the talented Robin E, my 510A buds, Mary and Vanessa ...

UPDATED: I cannot forget the people at the Cancer Survivors network, who help my virtual hand through all this. Thanks to you all.

I know there are more and please don't be offended if I left you off because you are in my heart if not in my chemo brain.

It's not like I'm forgetting the #1 person. Claire Maria McCarthy has been stalwart and unconditional in her care of me. This goes far beyond what marriage means in my book. Her tolerance is mighty, her skill unparalleled, her strength awesome, and her love bottomless. I love her dearly and look forward to rebuilding our life together.

UPDATE: Claire threw out her back. I'm trying to do more, but am failing. Her back is sore and she's doing Advil and bed rest and knitting.

Many of you have asked for an update on the checklist... anything off the list? how is the list going? any progress on the list? So I thought it a good time to update. Overall, improvement can be shown, but moving at a snail's pace.

Here is the original list with updates posted in parenthesis.

- high blood pressure (LOWER)
- thrush (BETTER)
- high heart rate (NO)
- weight loss (NO, gained back 3 lbs)
- dehydration (NO)
- peeling skin (neck) (NO - looks like a great farmer's tan)
- dry skin (body) (YES, BUT BETTER)
- smelly mouth (BETTER)
- interrupted sleep (YES, Definitely)
- fatigue (YES)
- mouth sores ("like a million paper cuts") (YES, but improved)
- afraid to swallow (YES)
- pain in swallowing (YES)
- radiation burn (NO, all healed)
- acid reflux (YES)
- loss of voice (hard to talk) (BETTER)
- gag reflex (SOMETIMES)
- vomiting (BETTER)
- depression (YES)
- anxiety (BETTER)
- hair loss (YES, see previous post by Mick)
- mucus, mucus, mucus (YES, but changing)
- lack of taste buds (BETTER)
- general malaise (BETTER)

Equipment/Medications/Aids:
- feeding tube (YES, exclusively)
- suction machine (NO - IT'S GONE)
- ativan (SOMETIMES)
- SSD cream (NO, radiation burn healed)
- diflucan (Just finished another course)
- pain meds as needed (Advil)

********

Finghin often asks me to show how many days on my hands until... his birthday, Christmas, next playdate, etc. The other day he asked me to show how many days until Michael would be feeling better.

********

Another other day, Michael was going through one of his oft daily coughing/hacking episodes seated on the edge of the bath. Finghin came to him, placed his hand on Michael's bald head and said that he had to take his medicine like the doctor says and then he will feel better.

Yes. I cried too.

Hannah and I have been know to throw on some dance music every so often and rock out/work out around the house. Favorites include electronic/house dance tracks like Leftfield and Faithless with the old reliable being rocking out to Muse. Today was one of those days. We had Afrocelt playing, pumping up beat, getting into it when Michael came downstairs to fill up his water jug, and..... he joined in!!!! It was very cool, some grapevines, jamming, step, squat, punch, YAY! He did great, it was fun, we laughed, we got the blood flowing....and then he had to go lay down!

Hannah says we should do it every day.
I agree.

Special thanks to mom Claire for her unwavering, vigilant mom-ness taking care of 3 kids (if you count me), Grandma Teresa, and Grandma Mickey.

I say that especially for Claire because these days I am frustrated and grumpy and she takes the brunt of it. The ENT Dr last Thursday told me it's likely what's causing the sores in my mouth is fungus and I need more meds to take that away. Ugh. The sores are not super bad, but they are always with me and tend to peak when I rinse which is about 1000 times a day. My throat is dry and I feel like I'm constantly gagging. Fun.

I do feel some positive movement - I have a bit more energy - but
it's not enough. I noticed I have a new, chemo related patch of baldness, right at the back which has not yet grown back. If I let the hair around it go I look kind of mangy so I have decided, for the meantime, to go Kojack. The feeling is odd, the look is awful, but it's better than the mangy look.

I look old. I am skinny (158), saggy, short, and useless. If it were not for school I would feel completely without meaning, seriously. I know I mean something to someone, but I mean personally, to myself. I don't do anything, can't help anyone, can barely talk, and sit around miserable pretty much all day. If the sores would go away that would be huge. Followed by being able to swallow. Then at least I'd feel somewhat normal. If I didn't have mlb.com as a constant companion I'd feel very alone.

That last sentence made me think of Claire and Noah. It is because of them I do not feel alone. Claire is always ready to hold me when I feel like I cannot take it any longer. The times this has happened might occur just after I've vented my inner process at her, yet she has the understanding and grace to hold me. She is a wonder.

Noah spends silent hours here during the week when he is not working, sitting with me and my kids, playing or just being. His influence is calming and full of care. He is ready to perform any task, no matter how menial if it will help Claire with her day. He is solid gold. I am so grateful to both of them.

I graduate in 3 weeks so I have a lot of work to do. I miss not being in the world and am looking forward to rejoining it, and seeing all my friends again soon.

Michael

Q. Is Michael driving?
A. No.

Q. Is Michael able to take any food by mouth yet?
A. No, all feedings are through the PEG tube.

Q. When will the PEG tube come out?
A. No date has been set. It will be removed once Michael can take in sufficient calories by mouth to sustain his health.

Q. Is Michael catching up on his sleep?
A. No. Michael still does not sleep through the night, is very fatigued, and is a spontaneous napper.

Q. I wanted to invite Michael to an event this week, is he up for that?
A. No.

Q. Is Michael on line? Is he answering emails?
A. Michael is on line as he is participating in an on-line class at Capella University in order to graduate. He also checks out baseball and other sports on line, but generally is not returning emails at this time.

Q. Is Michael up for visits?
A. Depends on the day, please check in with me if you would like to visit.

Q. Will Michael take my phone call?
A. Probably not yet.

Q. How is Michael's speech?
A. Michael's voice continues to get stronger and he no longer talks in whispers, but mucus continues to interrupt conversations.

Q. Is Michael in constant pain?
A. No. Michael has episodic pain events, most of which do not last very long, but can be very intense.

Q. How is Michael's mood?
A. Michael wants this to be over so badly. He is depressed, frustrated, tired, weepy, and emotional, but has moments where a ray of hope comes through and he smiles.

Q. Is Michael bed bound or can he get up and walk?
A. Michael is not confined to bed. He can get up and walk around and does so several times a day.

Q. Does Michael go outside for walks?
A. Michael needs to be very careful with sun exposure due to the radiation, so at this time chooses to do his walking indoors.

Q. Has Michael gained any weight?
A. Yes!!! He has gained back about 3 pounds and is now at 160 pounds.

Q. What does the formula taste like?
A. Michael administers the formula through his feeding tube, so it has no taste that he can register unless he vomits and the he says it tastes like sour milk.

Q. What can I do to help?
A. Keep up the good thoughts and vibes. It does help. I will, and do reach out when I need something.

Q. What is it like without Grandma there?
A. We all miss her very much. The kids continue to sleep in "Grandma's room". But we are glad that she arrived home safely and was greeted with open arms by her other grandchildren (get well soon Katie).

Q. How are the kids coping with Michael's illness?
A. In general they are coping well. We talk with them often, get them to talk about how they feel, and make sure they know they are loved and supported. Finghín will sometimes offer Michael something, like a glass of water, as a way to help. It's very sweet. Hannah is a bit reserved but hugs Michael daily.

Q. What are you doing to take care of yourself?
A. Nothing! Maybe in September :)

Q. Can Michael help in any way around the house?
A. Yes, he can and he does. Today he did some laundry, folded clothes, tidied up the kitchen... I am so grateful!

Q. When does Michael graduate?
A. May 29th.

Q. What do you have on the needles at the moment?
A. Knitting a very cute girl's dress.

Q. Are you still working from home?
A. Yes, with occasional trips to the offices in Santa Rosa and Santa Clara. I am so grateful to everyone at Agilent for their amazingly wonderful understanding and support. My home office is all set up. I am pretty much on the phone all day in meetings (hence the busy signal if you try to call), and am keeping up with all of my work commitments.

Q. What else?
A. Happy Birthday to dear Tyler. We love you much. Gary, thanks for making the trip up to see us. We love the BIG t-shirts and it was fantastic to see you on Saturday. Michael is demanding a rematch!

Feedings continue to go well and Michael's weight has definitely stabilized. With 2,100 calories per day and very little activity, you might think he would be gaining some weight back, but it looks like he needs pretty much all of those calories funneled towards healing.

Mouth/throat sores, mucus, and fatigue still dominate the symptom list. Michael thinks that the mucus may be a little less, but as a result some of the sores are not coated or protected as well by the mucus and they hurt, really badly, a lot, often. Swish, gargle, spit, groan, swish, gargle, spit, groan, repeat again and again. Treatment ended 25 days ago today, how much longer is it going to take to get some relief?

Yet, despite all of this, Micheal continues to keep up with his course work so he can graduate next month. Michael appreciates his teachers for their support, encouragement and understanding. It is a good outlet for Michael, something that is of keen interest, a positive distraction with an end goal. AND, it IS baseball season after all!

Grandma Teresa enters her last week with us and it is making us all very sad. She has recently been promoted to Chief Cheerleader since no matter how bad Michael is feeling, she is always there with a cheer, a word of encouragement, a compliment, a fist pump: "Mike, you are looking good today", Mike, it is good to see you downstairs", Mike, any day now it will be better". She is amazing, amazing, amazing.

"Really?" Michael asked as he is having a hard time feeling this goodness. For him, his pain is an annoyingly manageable 2-3 on a scale of 1-10, with an occasional 10+ for some pesky tongue sore. His fatigue is constant, as is the presence of the mucus. However, he did say this morning that he thinks he is feeling a little better. Yay!

So, we have another follow up appointment in two weeks time, when we hope to see more signs of improvement.

On other news: Hannah and Finghin are doing well; Grandma enjoyed her weekend away in Vallejo with Caroline and Liam; the front garden continues its amazing transformation; looks like I have to admit to having a head cold and not allergies - yuck!

Recent thank you's: Kimberly for the driving; Angela for an amazing caregiver night out to see MUSE - Yay!; Declan, just because; Jim C. for being Jim and being there for us; Tamara, Michelle, Mary-Alice and Maribeth for continuing to hold and support our children at school. I know I am missing many as my head is stuffy and tired and it hurts a little.

Thank you all for your continuing calls, cards, thoughts, and emails. As always we feel so grateful, supported, loved, and nurtured.

As the primary care giver for Michael, I recognize my limitations. This week has brought those limitations into sharp relief. I have felt so helpless at times in caring for Michael as there is really nothing I can do to speed up recovery so that he can feel better. I can be there as a shoulder to cry on, someone who can clean his wound, someone who can calculate his calories, someone who can administer his medications, but yet, I still feel it is not enough when I see his pain and despair.

It is also a balancing act of knowing when to provide help versus asking is there anything you need. At times Michael does not know what he needs and I haven't a clue what to do either. It is an impossible situation and the endless dilemma of the care giver.

I hope this week is better.