Where I Am In All of This...

Wellness Barometer

2012-01-25T21:13:00.001-05:00

Today was my fourth round of Folfox (systemic chemotherapy). By the time the treatment was nearing completion, the nausea was coming into effect. This is a new experience with this treatment. And fortunately, the nurses have me trying a new combination of anti-nausea medications, with the intention to reach 99% effectiveness. I look forward to that possibility. Oddly, at the moment, writing this post seems to be distracting me from the nausea.

What I've noticed with the last three systemic treatments is how the level of hopefulness, or more specifically the hopelessness I feel about my overall future and chances of long-term survival, are directly related to the side-effects I experience from the treatment. And at the moment, another side-effect I'm experiencing is my ability to think clearly. It took me three or four minutes to figure out how to write the first sentence of this paragraph. "Chemo-brain" is often the term used by my peers for the lack of clarity or forgetfulness which often results from systemic chemotherapy. When I feel my worst, usually Friday and Saturday, my thinking tends to go unchecked, or shall I say, less frequently checked by me the observer of my own thoughts. And when I do notice my thinking, I find it to be very negative and hopeless. It's only after the weekend, that I begin to return to feeling hopeful.

One of things I've been meditating on is going beyond acceptance of my "humanity" (those parts of my personality I would prefer to do without), and taking on the possibility of gratitude for it. I have very little experience with actually experiencing this way of being, perhaps only a few moments in my entire life, but I can see the light at the end of tunnel. I know it's available to me. And having to manage such intense hopelessness while I experience these side-effects, inspires me to let go of the need to constantly judge myself. Now more than ever.

So, I have begun looking at what structures I can put in place to proactively manage the sense of hopelessness that currently accompanies the side-effects of these systemic treatments. One that I have come up with so far is the incorporation of hypnotherapy and I've scheduled a session for this Friday with a practitioner I have already had two absolutely extraordinary sessions with. Our intention is to do the session while I'm in the midst of this mindset, a place where emotionally, "my edges" are sharpest; when patience is lacking and ultimately I am not present to gratitude. The session will be recorded, so I can listen to it when the side-effects are at their worst and impacting my attitude and beliefs.

Gratitude has become my mental/emotional/spiritual wellness barometer. When I am present to gratitude, I have the experience that "all is well" - all I wish for and all I don't. I experience love. When I am not present to gratitude, I am clear there is something for me to distinguish, perhaps let go of. I have so much to be grateful for. I love my life, just not some of current circumstances. I'm not thrilled with the cards I've been dealt, but I have the opportunity to play the hand, and that is a privilege. Much of my life brings me great joy. My family, my son & step-son, my friends & community, the capacity to coach, and my music & all who share it with me. I'm committed to putting into place whatever tools necessary to represence myself to that which matters to me most.

And at the moment, the health report is slight nausea, fatigue, feel spacey & unclear. Also, my right hand is cramping, causing my fingers to lock in place for a matter of seconds or slowly tighten and curl inward. I just got off the phone with Dr. Garbo's on-call staff and was informed this is often a result of the rate at which the Oxaliplatin (chemo) is being administered and can also show up as leg cramping which sometimes makes it difficult for individual to walk. I was also told that it may get worse before it gets better. My legs cramped up a little this evening, but nothing serious.

Time to call my friend who goes in for surgery tomorrow. She's having a malignant tumor removed. Then I will lay down and get some rest

Lucky

2012-01-19T01:13:00.000-05:00

I saw this sign posted over a bar the other day. It made me think of...of me! I just may have found my new nickname.

Haha I love it!!!

The Show is On

2012-01-18T15:54:00.003-05:00

So I talked to the fellas and everybody's in. We are going to perform this Friday January 20th from 7-10 PM at Costello's in Auburn.

I am SO excited. And Taylor, Theresa & Joe are an absolute joy to make music with. Plus Patty who owns the place makes us feel as at home as any bar owner can. So if you're free on Friday evening, come on down to Costello's on Aurelius Avenue in the Prison City and let us play a few tunes for you.

Alkaline Phosphatase

2012-01-17T14:25:00.001-05:00

I took a look at this page and realized it's been quite some time since I last posted anything. And I know that often leads to questions about my well-being. So, overall I am well. And the last couple of weeks have been quite hectic.

On Wednesday January 4th, I went to Sloan Kettering for a liver-pump chemo infusion. After my blood work was complete, Dr. Kemeny informed that me the count of a particular liver enzyme, Alkaline Phosphatase, was too high so I would not be receiving the treatment and instead I would receive the traditional systemic treatment in Ithaca on Wednesday January 11th. Before I even thought about how my friend and I just drove all the way to NY only to be told it wasn't necessary, my mind was locked on how I was going to have to call Jack and cancel the gig we had scheduled at O'Toole's for Friday January 13th.

Thus far, the Fridays following my systemic chemotherapy treatment have been very difficult. The side-effects have been nausea; feeling heavily poisoned (the closest thing I can relate it to is a bad whiskey hangover); bone pain in my face, back, hips, thighs and shoulders (very much like sever flu symptoms) as a result of the Neulasta shot; and extreme fatigue. Clearly not something to manage while performing.

And I was so looking forward to doing one of the things I love most. It was only in the car on the way back from NY that I started to think about how much driving we had done, all for naught. And there wasn't anything for me to be upset about. Dr. Kemeny made it clear to me from the beginning that she only wanted her staff to do the blood work that would determine whether I receive my pump chemo treatment. However, upon delivering this news to me, she suggested that from this point forward, I have the blood work done two days prior, by Dr. Garbo's staff in Ithaca, to avoid another unnecessary trip, which I very much appreciated.

In the meantime, I had been preparing for the boy and I to move-in temporarily with a different friend, while I continue to search for an apartment in Ithaca. The place we had been since May was great. And, this is a time I need to selfishly take care or myself, i.e., peace & quiet. Living in a household with one adult and three children, plus my own child, is hardly peaceful and quiet. And there's no reason it should be. Kids deserve to be excited passion-filed little beings, which is not conducive for a person on a seven-month chemotherapy regimen seeking peace and quiet! So, as soon as my pump-chemo was cancelled, I knew I was only a week away from another systemic treatment and had less than a week to pack and find some friends whose schedules allowed for them to help me move, since I still can't really lift much or exert myself a whole lot. Yet, three days later I was blessed with the help of some dear friends, and all of our things were moved for us. And we now live in a great space in a quiet little neighborhood which couldn't be better.

And while I was typing this blog entry, I received a call from Dr. Kemeny's office; my blood work shows my Alkaline Phosphatase count is still a bit too high so I'm ineligible for a liver-pump infusion on Wednesday and will again do systemic chemo treatment in place of it on Wednesday January 25th.

The bad news? I have to cancel our only other scheduled gig, which was at the Beach House in Lansing on January 27th. This just ain't working for me. I just texted one of the guys about doing a private performance somewhere between Ithaca and Auburn. Maybe even this Friday if possible. Music is an outlet that provides me SO much. It's something I absolutely wont do without. Yes, I play music with friends - dear friends - and I love it. But there's nothing like performing with a band of incredible musicians who've come to operate like a finely tuned machine. And then add the energy of a great crowd. It's a high that can't be created any other way. And like I said, it's something I absolutely wont do without.

Grateful

2012-01-06T12:21:00.000-05:00

This morning I bought a hot breakfast and a cup of coffee for a pregnant junkie with only two days to get out of her apartment. And she's just a kid. What the hell am I doing feeling sorry for myself?

I watched this video again this morning (click on the link below). It moves me to tears. Thank you Fran xoxo

The Light is always there for us.

Disappointed

2012-01-05T01:00:00.002-05:00

This morning a friend & I went to Manhattan for my second Liver Pump chemotherapy treatment. An hour after I had my blood drawn, I met with my doctor, Dr. Kemeny, and she informed me that certain liver enzyme numbers were too high and I would not receive a treatment today. Instead I will receive another systemic chemotherapy treatment on Wednesday January 11th. She then suggested that we schedule my blood work two days in advance in Ithaca, so I don't have to drive four hours to find out it isn't necessary. I agreed that it was a good idea....................................

This is a significant change, because upon our first visit, November 30, 2011, she was insistent that my blood work be done in-person, in the clinic, by the MSK staff. Today she changed her mind and I am relieved. For me, it was a lot of time, energy & money devoted to a trip that provided very little. Although, if nothing else, it provided Dr. Kemeny what she needed to approve my blood work to be done in Ithaca to keep this from happening again and I am grateful for that.

The most disappointing part is that I had to cancel my January 13th performance. If I'm receiving chemotherapy from January 11th-13th, there is no way I can do a gig on the 13th. The nausea & toxic feeling on the third day of treatment, as well as the day that follows (Friday & Saturday), are just brutal. Performing is out. Once my liver pump treatment has been completed and I am back on schedule, I will book another gig (hopefully for February).

ROUND TWO

2011-12-27T23:31:00.000-05:00

I go in Wednesday December 28th for ROUND TWO of chemotherapy. The standard out-patient infusion followed by a 46-hour take home pump to be removed on Friday the 30th. whi-hew.

Side-Effects Pretty Minimal

2011-12-23T23:47:00.000-05:00

I'm glad to report the chemotherapy side-effects are pretty minimal at the moment. The worst part of my day today was after lunch, my system felt a little toxic and I was fatigued for a bit. That seems to be the theme for this first round of chemo - feeling nauseous after I eat.

I'm thrilled I didn't have chemo just this past Wednesday because I would likely have been miserable on Christmas Eve. My next systemic treatment is Wednesday December 28th - Friday December 30th. It looks like this New Year's Eve will be a quiet one for me.

The Last Few Days

2011-12-19T00:39:00.001-05:00

Well, Wednesday I went home from the hospital with a pump inside of a fanny-pack hanging form my hip. It had 5-FU chemotherapy in it and pumped continuously through Friday at 1:30 PM (a 46-hour drip). On Thursday, I sat around the kitchen table with friends and we played our guitars. It felt great to be out.

And when I woke up Friday morning, I didn't want to get out of bed. The toxins felt heavy running through my body and once I did get up and ate some food, the nausea revealed itself. However, once I got moving I felt a little better. I got to the hospital, they unhooked the pump and then gave me my Neulasta shot (aka Pegfilgrastim). Neulasta is an e coli based pharmaceutical designed to stimulate white blood cell growth. The side-effect is pain in the bones, similar to flu symptom type aches. I felt them for about 24-36 hours after the shot. Reason being is because it's the bones that create the white blood cells and as since the Neulasta causes an serious increase in production, it actually hurts. I took Tylenol for it as recommended. It seemed like using a Dixie cup of water to put out a camp fire.

So, I returned home from the hospital on Friday, only to feel nauseated again. I spent the afternoon laying on the couch occasionally stoking the fire in the wood stove, a nice feature when feeling a bit gloomy. Late afternoon, a friend came by with dinner and talked with me until I was started falling asleep. On Saturday I woke up to the sound of my friend's voice. Again, the toxins felt heavy running through my body. The only difference between this day and the previous was the nausea didn't wait around for me to eat something and and my bones were aching from the Neulasta shot. My friend put some water on the stove for tea and we talked while I got acclimated, unfortunately, to feeling like hell.

My folks came by on Saturday afternoon and spent the day with us. We had a nice day together and went for a walk down the street to see the neighborhood waterfall in hopes that some movement might help me feel better. A little later in the afternoon the nausea got bad so I took an anti-nausea med. Thank goodness my folks were here when I did. The stuff knocked me out cold, which is not workable when I'm caring for my little boy. So on Monday, I will put in a call to the doctors office and ask them to do what the insurance company requires so I can be prescribed the next best anti-nausea med on the list (the insurance companies like to put their customers on the less expensive medications first, then work them up the ladder as needed).

This morning I still felt nauseous but seemed to move through it a little easier. The poisoned feeling was still pretty strong as well. Once the afternoon came, we went to a friends house for a play date, where I could just rest quietly on the couch and watch football and move through the waves of nausea. The little guy having friends (he loves) to play with while I rest easy really makes a huge difference. And my being around friends I love, happy to be with me while I'm not feeling well, definitely makes a huge difference for me.

I'm feeling significantly better this evening. Perhaps round one of chemotherapy will wrap up tonight.

With Deep Gratitude

2011-12-16T20:44:00.000-05:00

108 Sun Salutation Benefit

2011-12-16T01:24:00.001-05:00

I am honored to say Fine Spirit Studio is hosting a 108 Sun Salutation Benefit in my honor on the morning of Sunday December 18th. $20 is the suggested donation. Know that if you attend, you are not required to do all 108 Sun Salutations, but instead to do what works for you. Yoga is the intention and the space is limited, so in order to not distract, it's requested that conversation happen in the room at the front entrance where it won't be a distraction to the other participants. I am very grateful to Diane Fine and Fine Spirit Studios. Thank you!

First Systemic Chemotherapy Treatment

2011-12-14T20:01:00.000-05:00

Today was my first Folfox chemotherapy treatment at Cayuga Medical Center. I feel a bit "off" but certainly not sick. It feels more like a light hangover. The staff at CMC went above and beyond what I expected and made the time there a real joy, not to mention the generosity they provided by tolerating my twisted sense of humor!

As we left and were walking outside, the cold air hit my hands and felt like freezing cold water dripping onto my skin. And this evening when I took a sip of room temperature water, it felt like ice water running down my throat. These are both examples of the treatment side-effects, to be anticipated for the next 7-months. In the mean time, I have an electric pump, attached to my hip, slowly pumping chemo into my veins. It will be removed on Friday afternoon. I'm uncertain what the side-effects will be like by then. I suppose I'll drive off that bridge when I get to it.

They're Here!

2011-12-09T21:41:00.001-05:00

Well, on Wednesday I noticed the lack or taste in my mouth, which is the best way I can describe the one of the symptoms I experienced during my previous chemotherapy experience. It's an experience that leaves me wanting to put a piece of candy in my mouth to cover up the bad taste, which again is more like a lack of taste. Then there's also an experience of tightness behind my eyes and in my nose. Both the mouth and the sinuses are soft, mucous membrane tissues and thus effected when the body is being administered chemo, medicine that kills rapidly developing cells. And as anticipated by my oncologist and her staff, the sensations are minimal, and certainly nothing compared to the side-effects I experienced in 2007 & 2008.

That being said, I've been anticipating the upcoming systemic treatment, wondering how my body will feel on December 14th and the weeks to follow, once I start the systemic chemotherapy treatment. Initially, I stopped scheduling any coaching sessions and planned on scheduling no musical performances. And then a friend supported me in distinguishing how I had put the cart before the horse. Once I noticed that, I scheduled coaching sessions and I'm in the process of booking a couple gigs if there are available dates where I prefer to perform.

However, I noticed I was still doing it, if not with scheduling my life, at least with my general attitude about "how it's going to go." The reality is I really don't know how it's going to go, so my intention is a pleasant and joyful experience of each moment. Should life circumstances show up otherwise, I'll manage that when the time comes. But either way, the side-effects have started.

First Chemotherapy Appointment At MSKCC

2011-11-30T14:32:00.001-05:00

Earlier this morning I arrived at Memorial Sloan Ketttering Cancer Center and had a CT Scan. In just a few minutes, I'll have my blood drawn and then an appointment with my oncologist Dr. Kemeny. She'll review the blood work and a variety of liver enzyme counts, and then prescribe the chemo to be injected into my liver chemo pump. It will slowly "drip" chemo into my liver for two weeks. I've been told that 90% of the chemo will be filtered out before it ever leaves my liver and enters my blood stream, so the side effects will be negligible.

Two weeks from now in Ithaca at Cayuga Medical Center is where I'll receive Folfox, a systemic chemotherapy. This is the treatment I'm curious to return to. My body did not respond well to it in 2008-09. And perhaps things will be different this time. Dr. Kemeny says if I'm so sick that I'm laid out on my back for six-months, like I was last time, that the dose is too high and she'll lower it. Funny thing to think about. Do I want a lower dose? If I'm going to do chemo, I might as well dig in and do all I can. And, I will ask Dr. Kemeny about that during our appointment today.

The Truth About What's So

2011-11-29T22:58:00.002-05:00

I guess I've been a little slow to post lately. I haven't felt particularly inspired to write what's been going on with me. I've been kinda blue as of late. And there has been a lot of emotion directed my way from those dear to me about how I should be doing things. I interpret it as a gauge for how people in my life are responding to what I'm going through and how concerned they are.

This all leads me to wonder, if I was more self-expressed about what was going on with me, might people have an easier time being with the whole thing themselves? I don't know. It's a pretty tough situation, but since it's a possibility, and certainly no secret, my situation is a frightening one. I either get better or I get a whole lot worse. I know that's in the mind of a lot of people because it's in my mind when I hear about others with a Stage IV diagnosis. And it's my mind about myself right now.

As I'm typing this, I'm looking across the room at a photo of my little boy. Last week I was ready to make a deal with anybody who would listen: just give me until my boy is 20 and then you can take me with no argument. "No argument." That's funny. Like arguing would make any difference.

And then there has been other issues this week. My source of disability insurance claims I currently owe them money, which is absolutely absurd. So in the mean time, as I wait for them to figure out the source of their mistake, I'll be going to the Department of Social Services to see if I'm eligible for Emergency Financial Assistance. I used to sign those documents so my residents could receive it. I never thought I would be a potential recipient.

So the last couple days have been really difficult. And fortunately, a dear friend made a few calls to some other friends and paid a few of my bills for me. People have been incredibly generous. I'm incredibly humbled and equally grateful.

I feel like I've shared too much. Maybe it's just been while since I've been willing to be this honest.

Another Series of Appointments Complete

2011-11-17T02:04:00.001-05:00

On Saturday November 12th, I was in NY with my sister Vivienne because I had appointments all day Monday (November 14th) at Sloan Kettering. I'm very grateful for Vivienne's presence, because it was non-stop from 9am to 7pm, not to mention it was great to spend my time with her.

I checked in about 9am for a second flow scan for my Hepatic Arterial Infusion Pump (Liver pump). The scan revealed that all is working properly and the liver pump chemo can begin on November 30th as planned. However, the staff started the scan later than scheduled and at 12:08pm, Vivienne & I exited the hospital and headed to the clinic, now late for a 12pm EKG appointment. Just to clarify, all of my out-patient doctors appointments are on 53rd Street at the Rockefeller Outpatient Pavilion (what I call the clinic), while the scans and surgical procedures have been done at the Memorial Sloan Kettering Cancer Center, commonly referred to as Memorial Hospital. So, we left the hospital at 12:08 and immediately went to 53rd street for a EKG scheduled for noon as well as my appointments with both my surgeon and my oncologist. Following those appointments, we returned to Memorial Hospital for a quick out-patient surgery, during which I had a port installed. At 7 pm, we were on our way back to the hotel room. Man, it felt good to get out of there and be back onto the streets, with no more appointments to think about for the next two weeks. With so many appointments in the day, Vivienne and I spent the entire time concerned about whether we were going to be on time for the appointments, or more specifically, if we were even going to make the appointments. For us it was hurry up and wait all day.

Fortunately, we ended the day with a very nice dinner followed by 45 minutes of live music, both with our German exchange brother, Hinnerk, who is back in town for a joint birthday celebration we're having for our folks this weekend. Amazingly, my appointments in NY coincided with his arrival in NY. It certainly made for a really wonderful time.

On Wednesday November 30th, I return to the Sloan Kettering for my first liver infused chemotherapy treatment. Two weeks later, I'll go to the Cancer Center at Cayuga Medical Center in Ithaca and receive Folfox chemotherapy, systemically, via my port. Also the liver pump will be filled with a saline & heprain solution because at the two week mark, the pump will have run dry. If it stayed empty, there is risk of blood clots, which would obviously be very dangerous. Two weeks after that, I'll return to Cayuga Medical Center again and the liver pump will be refilled with saline and heparin and I will have another round of systemic chemotherapy. One week following that, I return to Sloan Kettering to have the pump chemo again. I will do six rounds of this five week cycle for a total of seven months.

Amazingly, the pump is activated by my body heat and the rate at which it flows is based on and therefore adjusted to the atmospheric pressure of where ever the patient lives, in my case the Eastern seaboard. Thus the pump flows at a very specific rate. Should the patient travel to higher or lower elevations, adjustments to the pump are made. Also, I'm not allowed to travel in non-pressurized planes, which doesn't exactly pose a problem for me. Hopefully, the little man and I will still be able to do a twenty minute ride in a prop plane with the East Hill Flying Club on Father's Day.

Returned Home

2011-11-08T23:10:00.001-05:00

I returned to Ithaca on Monday afternoon. It's good to be home and even better to be back with my little man. I missed him a ton while I was gone.

I'm feeling as well as to be expected. So, I took only a half a pain pill this afternoon in hopes of starting to reduce my intake, but not a chance. The pain level slowly started rising and I quickly took the other half. I guess not so soon.

I take regular walks as the doctor ordered and I still need a ton of rest every day. But supposedly I will be pretty close to recovered at the four-week mark, considering my oncologist has me scheduled for chemotherapy to be gin at that point.

Speaking of being tired, I can barely keep my eyes open. I'll expand more later...

Discharged

2011-11-05T00:41:00.002-04:00

This afternoon I was discharged. I will stay in New Jersey for three days. If I have no difficulties and thus no reason to return to the hospital, I will return to Ithaca to continue my recovery.

My first return appointment to Sloan Kettering is on November 14th. Yeah, ten days. Seems kinda crazy to go back so soon. Apparently, I need to do a second liver scan test before chemo begins, to be 100% certain no blood vessels from my liver go anywhere other than my liver. I'll have the staples removed from my abdomen and a few other things that currently aren't coming to mind at the moment.

Then two weeks later on November 28th, I return to Sloan Kettering for my first round of the liver chemo (the chemo administered directly into my liver). I will only do only the liver chemo in at Sloan Kettering and I will do the systemic chemo (the chemo administered into my veins) in Ithaca.

Enough talk about chemo. At the moment, I don't want to think about it.

Waiting it Out

2011-11-03T15:06:00.001-04:00

It seems that each day here in the hospital has provided me a different hurdle. Once the epidural was removed and I was put on oral pain medication, I went in for a pump test which included liver scan to make sure the pump was working and that all blood vessels led into the liver and only the liver. Well, during the scan it was found I had a rogue blood vessel which ran from my liver to my stomach. If left in tact, the chemotherapy pumped into my liver, would find its way into my stomach and that would not be good.

So on Wednesday evening, I had a catheter injected into my groin artery [good times!] and the doctor found his way to the said blood vessel and blocked it. As a result, I can now undergo the liver pump chemo which is what I came here for. The procedure has a 70% chance success rate, and without a successful procedure, liver pump chemotherapy would not be n option. So, his success was great news.

This morning, my surgeon, Dr. Di'Angelica and his crew took a look at me and decided to keep me a little longer. After my large intestine finally got moving on the Tuesday after surgery, it got sluggish again, due to the no food & drink order for Tuesday after midnight in preparation for Wednesday's procedure. So, I've taken two walks and a variety of things to get the ole bowel moving.

I do look forward to getting out of here, and at the same time, I'm very happy to be under the hospital's care until "things are back in order." So, I'm waiting in out.

Made a Friend

2011-11-03T01:14:00.001-04:00

Had a visitor Monday. Otis. Very sweet fella who makes weekly rounds seeing patients.

Feeling Cared For

2011-10-29T21:44:00.000-04:00

On Friday morning at 5:30am, Mike & I arrived at Memorial Sloan Kettering Cancer Center. The woman at the desk asked for my name and date of birth as they always do. Then she asked what I was here for. I didn't want to answer. I didn't want to have to say it, to give it life. And, what else was there to do. I told her, "I'm here for a liver resect and the installation of a pump." She nodded agreement, gave me a bracelet and directed me to the waiting room. Every patient in the building is here for one diagnosis: Cancer. The Emperor of All Maladies. Tears started to well up in my eyes. And moments later I was brought in to be prepped for surgery. Standard procedure. On the bed was the gown, the hair net, the anti-slip not-socks and a couple extra blankets. Another feeling of sadness showed up. This again. I'm kind of tired of changing into the surgery clothes. Well, I got changed, joked around shootin' the breeze with Mike, and within 45-minutes, an epidural was implanted in my spine and I was ready to rock-n-roll.

I was in and out of consciousness all afternoon and evening on Friday, nodding in and out of game seven of the World Series. This morning when I woke up (on the 16th floor - exciting for small town guy like me), I felt the tightness & soreness within my abdomen & chest and I thought to myself, "I really did have liver surgery yesterday. Liver surgery. Damn." I looked at the incisions and felt the hockey puck-size pump

almost exactly parallel to my stoma. No, I would not have guessed I would ever have returned for another cancer surgery. And here I am.

After being awake for an hour or so, I couldn't take more than a shallow breath without having serious pain. It was definitely a bit scary. The only thing keeping me from getting truly scared was that the staff were so calm and cool about it. They changed my medications and soon I could take a descent size breath.

Mike was here with me Thursday and Friday. And my folks arrived on Friday and will stay through Sunday morning. Having loving friends and family available to spend time with me is such a privilege. I get a bit anxious now and again, but for the most part, I feel completely cared for.

Please keep in mind the streaming of this blog onto facebook has about a 24-hour delay. If you don't want to wait an extra day for my blog updates, you can go directly to the link: http://bertscholl.blospot.com

Love Bert

2011-10-29T13:56:00.001-04:00

Surgery went well. Feeling pretty wiped out. xo

2011-10-27T17:19:00.001-04:00

Surgery has been scheduled for 7:30am on Friday. The sooner the better...

"I must confess, the risk of death takes all the fun out of it." ~ Robert Scholl on Cancer

2011-10-25T23:06:00.000-04:00

Surgery Five Days Away

2011-10-24T01:12:00.000-04:00

I just read my last entry/update and noticed I did not provide the specifics as I promised...

Well, I'm going to get that...later. What I will say now is that surgery is still scheduled for Friday October 28th, time to be determined. In the mean time, I have been doing a lot of different types of energy work with a variety of practitioners. I am in an extraordinary space as a result.

Just like the first time I was diagnosed, I am clear this recent diagnosis is a gift as much as the last one was. In case you're unclear what I mean, I'm clear that all in life is the gift, not just what I like. And all the joy, pain, fear, sadness, happiness, etc., are all part of the package. I believe we are provided every experience we have as an opportunity to live life with love & gratitude, and sometimes it just seems like that 's not even an option. It's mind blowing managing circumstances such as this and yet actually easier (at least currently) than dealing with my wife leaving me. It's easier to have a positive attitude about the cancer diagnosis because it does no good to argue with cancer. It doesn't listen. You can't change it's mind, so you accept it - at least I do.

I was speaking with my friend, Christina, while I was at Sloan Kettering last time and she articulated it quite well. These experiences I am having, i.e., cancer diagnosis, don't keep me from living the life I've been given. They are part of the life I've been given, the experience I have been provided. Part my journey, not a delay or distraction from it.

And at the moment, I am still resisting the thought of surgery and chemotherapy. Not like I won't do it, I'm just noticing my thought process and the resistance that's present. And I'm also quite anxious, which I notice most when I find myself being annoyed & judgmental about whatever I'm dealing with. I've noticed a lot lately the circumstance I'm annoyed with is often not why I am actually annoyed. But sometimes I'd rather be annoyed with something surface than actually deal with my sadness and frustration with how my life has gone in the last year. There are aspects of "the gift" for which I am currently not experiencing gratitude, to say the least. And yet, I am grateful for my life. Funny thing how that all seems to show up all at once...

Like the fella in this photo. Just because he has snakes squirming through his skull doesn't mean doesn't mean he's not grateful for his life.......

2011-10-13T22:29:00.000-04:00

I just added a feature to this blog. There's a spot on the top left corner where you can now subscribe to this blog and have email posts emailed directly to you. Very cool. Very convenient.

Thank You

2011-10-12T17:56:00.002-04:00

I have made my decision. I will have my surgery and post-surgery chemotherapy done at Memorial Sloan Kettering. The surgery date is Friday October 28th. I will provide the specifics in the next day or two.

I also need to share that I am overwhelmed with joy & tears by the enormous generosity of the people in my life. I agreed to have surgery at Sloan Kettering, letting go of my fears about whether the logistics of it would be manageable. And today as I confirmed nearly all of my lodging accommodations for treatments in New York, I was suddenly in tears and present to immense gratitude. I realized how concerned and worried I really was about it all working out. I'm constantly present to how I do not have the support of my spouse like I did last time, and I won't pretend it doesn't concern me at times. Yet I feel completely taken care of right now as a result of all who have made themselves available to me, family & friends, by simply offering their time, love & energy to me. It's not just the actual accomodations and physical presence of others that has me feeling supported, but the offers all of you have made to be available to me however & whenever I may need you.

I also have the possibility of an apartment 5 minutes from downtown Ithaca in the works. If you know of any possible apartments available in Ithaca, please let me know.

Thank you for being such extraordinary people.
Love Bert

3rd Opinion at Sloan Kettering Monday October 10th

2011-10-07T00:04:00.000-04:00

On Monday October 10th, I have an appointment at Sloan Kettering with a liver surgeon. I will receive his recommended treatment for conventional oncology as well as his recommendation about a clinical trial called Hepatic Arterial Infusion, where chemotherapy is injected directly into the hepatic artery and thus directly into the liver. This would be in lieu of surgery. What immediately comes to mind is that I will only participate in a clinical trial if it's in the final stages and very safe. And I am going there to listen and ask questions. I will make a decision after all my questions have been answered.

The odd thing about Sloan Kettering is that they scheduled my appointment with an oncologist on November 2nd because the demand for oncology appointments are far greater than the request for surgical appointments. I don't know if I want to wait until November 2nd to speak with an oncologist. And we'll see, based on how Monday's appointment goes.

Biopsy Results "As Expected"

2011-09-29T11:02:00.003-04:00

I received a call from my surgeon's office and they said the biopsy results were "as expected." The mass is malignant and in lay people's terms, is Colon Cancer, which means it is metastasis, which I believe is better than a diagnosis of liver cancer. And regardless, there's nothing really better, one verses the other.

All data is being faxed to Sloan Kettering today. I will receive a call back from Sloan Kettering when they are ready to schedule an appointment.

The reason I'm getting a third opinion is because I want doctors who are among the best in the world in their fields, to give me their surgical and post-surgery treatment (i.e., chemotherapy) recommendations. I've received some conflicting post-treatment chemotherapy recommendations, which I'm not going to elaborate on right now, and having a third opinion may provide me more clarity. Or less. But that's the rub when it comes to multiple opinions. The choice is ultimately up to the patient; they can engage in the decision making or they can be apathetic and simply do what's recommended, as some patients are, due the overwhelming nature of such a diagnosis.

So, that's the scoop. And I have a picture of the liver biopsy (which I took with my phone) if you want to check it out ; )

Surgery Postponed for 3rd Opinion

2011-09-23T10:27:00.002-04:00

I have postponed my surgery date in order to obtain a third opinion from the doctors at Sloan-Kettering and I'm currently in the process of scheduling my third opinion appointment.

As this week began and my surgery date got closer, I became very clear that I do not want to have any regrets about the choice I made. I also distinguished that I was not getting a third opinion because of the "inconvenience" it would be to do so. It's funny how such an absurd thought can still show up even with all I have already been through.

Surgery is Scheduled

2011-09-16T10:24:00.005-04:00

On Thursday September 22nd I will be at Guthrie for pre-surgery admission and to meet with my surgeon about the process and recovery. His office will also do the leg ultrasound that same day.

My surgery is scheduled first thing in the morning on Tuesday September 27th at Robert Packer Hospital (a part of the Guthrie Clinic in Sayre, PA). My doc will remove the mass and make the final determination if it is cancer or not (he doesn't question whether it is, but it must be proven before the diagnosis is certain). He doesn't want to biopsy it first because he has a concern about if it were missed and what would be a positive test, mistakenly came up negative. He also added that on the "very unlikely chance" that it is not cancerous, he recommends removal anyway.

The doc anticipates me being in the hospital for up to a week, followed by a four to six week at-home recovery. I've always had a lot of laughs with the staff at Robert Packer Hospital (I've had a few stays there) and I'm looking forward to a few more...laughs, that is!

Living Space

2011-09-13T14:49:00.003-04:00

People have been asking what I need. I'm seriously considering moving to a studio/efficiency apartment that has space outside to play. Without question I would need an affordable rent. When I say affordable, I mean I'm looking for a landlord who, like many employers who are committed to paying a living wage, is committed to charging a "living rent." I don't know if those landlords even exist.

I'm not ready to move. I might stay where I am. I don't know. I've got a lot of thinking to do before I make my choice, but it's percolating... If you have any thoughts, please message me.

My Decision Has Been Made

2011-09-12T19:49:00.006-04:00

On Friday I met with a surgeon, Dr. Schoniger, at Strong Memorial/The Wilmont Cancer Center. He said he would take the same approach as Dr. Vandermeer, the surgeon I met with at Guthrie in Sayre. They are both respected surgeons, so I will be going with Dr. Vandermeer at Guthrie Sayre because he's closer to my home. I want my family and community to be able to support me through this surgery with as little travel time as is necessary. So, I spoke with Vandermer today and asked him his availability. He said he will likely be available on the 27th or 28th of September. He will have one of his staff call me tomorrow for scheduling.

As soon as he provided me those dates, I realized that's 15-16 days from now and just wanted to cry. So, perhaps later this evening or tomorrow when I get a free moment to myself, I will. I'll let it out and then get my shoulder back to the wheel. This isn't like last time. I don't have a committed partner by my side 24/7. I will be doing this...well, not alone, I know I have my family and community, but far more independently than I did the last time around.

Prior to surgery, I will get have an ultrasound procedure called a Duplex, during which my legs will be scanned for any blood clots. This is because of the massive pulmonary embolism I had following the last big surgery I had. Dr. Vandermeer wants to vanish as much risk of a repeat as possible. At the beginning of the actual tumor removal surgery, he will do an interoperative ultrasound (IOUS) with which he will scan my liver for any small tumors or cancer growth that CTs, PETs & MRIs can't locate, and to determine the location of blood vessels so he can navigate the surgery in the safest manner possible.

I will have about a week in the hospital following surgery, then a four to six week recovery at home. While recovering my doctors will put a microscope over the tumor cells and determine the best chemotherapy treatment. I'm looking at six-months of post-surgery chemo [insert frustration based profanity here]. And I'm committed to staying focused on being loving and grateful for my life and all that comes with it. We get what we get. And I have so much to be grateful for. In fact, my little man is the greatest motivation in the world. He's more precious than words can express and I'll do whatever I have to do to be here for him.

http://bertscholl.blogspot.com

Never Thought I Would Be Posting This

2011-09-08T19:16:00.003-04:00

On Friday September 2nd, my oncologist diagnosed me with metastasized cancer. I have a 2.4 cm diameter tumor in the right lobe of my liver next to my gall bladder. I have to admit, I was convinced I would never be diagnosed with metastasis. I was certain the cancer was gone for good.

What's in my favor is that the five prognostic indicators used to determine risk are all in my favor.

tumor size - small
number of tumors - one
less than 12-months since original treatment - it's been three years
if lymph nodes were positive for cancer at original diagnosis - none were positive
CEA aka cancer markers less than 200 - my CEA is 6.5

My doctor also believes the metastasis is likely a result of cancer cells that traveled from the (original) rectal tumor, through the vein that goes from the colon to the liver, and once the cells got to the liver, they stayed there for three years. And in the last six months the cells grew into a tumor large enough to be detectable. The plan is to surgically remove the tumor followed by six months of chemotherapy.

If my doctor's diagnosis is accurate, I have a 70% chance of being cured. And cured is defined as five years cancer-free. I'm getting a second opinion on Friday September 9th. If the treatment recommendation is the same, I'll schedule the surgery immediately following the second opinion.

In the mean time, Bert Scholl & Friends is scheduled to perform on Friday September 9th at O'Toole's in Auburn, NY. We likely won't have anymore gigs until after I recover from surgery. So Friday is going to be a fantastic night. And it's going to be exactly what I need.

And one last thing. For those of you I haven't contacted directly, I've got SO MUCH to manage and just haven't had a chance to call you yet. But I love you all the same.

Endoscopy: Went Well

2011-06-28T11:48:00.003-04:00

Today I had an endoscopy. I've been taking Omeprazole (generic Prilosec) for a gastro issue I've been experiencing over the last ten years. Specifically, whenever I engage in some kind of cardiovascular exercise, I have pain & pressure in my chest. No worries it is not a heart problem. In June of 2009, I had a cardio-stress test and a heart catheterization. I'm fine.

So I take Omeprazole and long-term use requires an endoscopy to determine if the source of the problem and also because Omeprazole will mask certain symptoms of stomach cancer. So, I had an endoscopy...

Patients are generally sedated for an endoscopy, but if you've read much of my blog since 2009, you know I'm totally uninterested in being sedated unless absolutely necessary. Well, now I'm clear why people are sedated for endoscopies. The throat is numbed with a spray that tastes has a horrifically unpleasant taste and left me struggling to keep my eyes open due to the stinging sensation. Once the mouth piece and the saliva vacuum were in place, the scope, about a half inch in diameter, was inserted into my throat.

As you can imagine, the gag reflex was in full force. The staff continually reminded me that I was actually able to breath, although there were a few moments where I felt the need to check. Once the instrument was well down my throat and entering my stomach, I was not only gagging, but I was also dry heaving non-stop. But don't worry it gets better.

In order to have maximum visibility, the doctor pumped air into my esophogus, stomach & eventually small intestine. And when air goes in, air must go out. So in addition to the constant gagging & non-stop dry heaving, I began to belch. No, I did not burp. A burp is the passing of air through the esophogus and out the mouth (or nose if you prefer). That was not the case. I was belching with a force I had never experienced in my life. Enormously loud, throat stretching belches that left me feeling like an out of control wild boar in the midst of a full blown panic attack and perhaps giving birth as well. It's quite a an experience and I'm sure quite a sight.

Gagging, dry heaving & belching, each in and of themselves, absolutely uncontrollable and non-stop. Take a moment and close your eyes and try to imagine doing all three at once... I'm surprised I didn't implode.

Two minutes after the scope was inserted, it was out and the procedure was over. Pathology results will be in by the end of the week. And the doc says he saw no signs of cancer. Thumbs up.

Embodiworks - Integrative Cancer Care Resources

2011-04-07T11:48:00.005-04:00

Embodiworks is an organization designed to support the WHOLE person as they manage a cancer diagnosis - addressing every aspect: mind, body & spirit. They address every aspect. Have a look. I really like what they are up to. They share my commitment to transform the cultural conversation about cancer into one that empowers all those affected. Perhaps you'll use it or recommend it to someone in your life.

Click here to go directly to their website.

St. Baldrick's April 3, 2011

2011-03-31T09:30:00.004-04:00

On April 3, 2011, I'm shaving my head again, but this time to stand in solidarity with kids fighting cancer, and more importantly, to raise money to find cures.

Please support me with a donation to the St. Baldrick's Foundation. This volunteer-driven charity funds more in childhood cancer research grants than any organization except the U.S. government.

Your gift will give hope to infants, children, teens and young adults fighting childhood cancers. So when I ask for your support, I'm really asking you to support these kids. Thank you!

Click here to go directly to my participant page and donate.

Lastest Test Results

2011-02-23T14:00:00.004-05:00

Today I received my test results from my blood work & CT scan. All test's came back negative. Come April 15th I will have been "officially" cancer-free for two years. I'm not feeling any joy as of yet. Right now I'm simply feeling relief.

The Power of Vulnerability

2011-01-01T17:12:00.004-05:00

A lot of people have asked how I maintained such a positive attitude through my cancer diagnosis & treatment. Brene Brown's talk on TED powerfully articulates a huge part of the "how" ...at least to the capacity in which I found the courage to do so. ♥ Click HERE on this link to watch it.

To let ourselves be seen, deeply seen, vulnerably seen. To love with our whole hearts even though there is no guarantee. To practice gratitude and joy on those moments of terror when we're wondering, "Can I love you this much? Can I believe in this, this passionately? Can I be this fierce about this? Just to be able to stop, and instead of catostrophizing what might happen, to say, "I'm just so grateful because to feel this vulnerable means I'm alive." And finally to believe that we're enough. Because when we work from a place that says, "I'm enough," then we stop screaming & start listening. We're kinder and gentler to the people around and we're kinder and gentler to ourselves.

Annual Colonoscopy

2010-12-14T19:20:00.003-05:00

Yesterday morning I had my annual colonoscopy. I can't believe it's standard protocol for sedatives to be given without question. I mean, I know a colonoscopy can be quite uncomfortable for some people, but I'm curious how uncomfortable it is for the average person. Because with a few series of deep breaths, I was able to manage the occasional discomforts. And the bonus was that I was able to go right to work directly after the procedure and not lay around sedated all day.

Oh, I almost forgot to say. Results were NEGATIVE. Everything looked good. My next colonoscopy will be in December 2011.

Saw Two of My Doctors Tuesday

2010-11-24T23:54:00.005-05:00

I saw my surgeon on Tuesday November 25th and he was happy with my progress. On Monday I realized I am no longer experiencing foot drop and that's very positive. The only lingering symptom is some slight numbness on the bottom of my big toe and the toe next to it. My doctor expects me to be able to return to work two & a half weeks from now. It's a little more time off than I had hoped, but I will do exactly as his says. This is clearly his arena and not mine.

I also saw my oncologist, the new Chief of Hemotology at Guthrie, on Tuesday and he said all my blood work was great, other than an increased white blood cell count. Considering I had surgery just a little over 24-hours prior to the blood test, it would make sense my white blood cell count was up. He also recommended I seriously consider being tested for the genetic predisposition for colon cancer. He said if I do have a genetic predisposition for colon cancer then my son would need to start having annual colonoscopies at age 26 - 10 years prior to the age I was diagnosed. If I do not have the genetic predisposition for colon cancer, then he could begin annual colonoscopies at age 36...I think. I find out more about that at my next appointment.

Considering I was a Stage II Rectal Cancer when I was diagnosed (at age 36), it would seem the start date for my son's annual colonoscopies would be based on when the cancer likely to have started, not when it was found. The cancer probably started two years prior to diagnosis and perhaps a cancerous or pre-cancerous polyp was what preceded the cancer a couple years prior to that. So I think it's more logical to start his colonoscopies at age 32 if I'm not predispositioned or age 22 if I am. Sorry kiddo. I wish you didn't even need to think about it. xoxo

In the Clear

2010-11-19T22:07:00.003-05:00

I'm happy to post that the withdrawals were over by Saturday. Now I know if a doctor treats me with narcotics in the future, I will need to plan for a few additional days of recovery to manage the withdrawals. Bummer, but it's good to know what the necessary preparation will be.

Post-Surgery Withdrawals/Recovery

2010-11-12T11:13:00.004-05:00

On Monday, I underwent spinal surgery. Two small pieces of spinal disc were somehow chipped off of one of my discs and stuck in the nerve canal of one of my vertebrae. The surgery was a success and requires two to three weeks of recovery.

During my pre-surgery meeting, my surgeon told me he would use Dilaudid, which is an opioid and a derivative of morphine, for my pain relief and then prescribe morphine for the pain. I immediately let him know I had previously been on medically prescribed morphine for a year and was not interested in having to manage withdrawals and would prefer something else. He said he would accommodate my request regarding the post-surgery pain management and use Tylenol with Codeine along with muscle relaxants.

Well, I stopped taking the Tylenol w/ Codeine and the muscle relaxants on Thursday morning and have since been experiencing what I can only describe as withdrawal symptoms. I have no concerns about addiction issues. I'm just disappointed that I'm going through withdrawals after being on narcotics for only 48 hours. And perhaps that's what I can expect as a result of a being on morphine for a year. Hopefully the withdrawal symptoms will subside in a day or two and not drag on for 10 days like the morphine withdrawals did.

On a good note, Extra-Strength Tylenol seems to be enough to manage the post-surgery pain. If all goes well, my medical leave from work will only last two weeks at the most.

My Life's Purpose

2010-09-11T22:23:00.006-04:00

One of the many gifts revealed to me in my cancer diagnosis was realizing my commitment to be a Life Coach. And it wasn't long after that I realized I would coach people with cancer, be that person the one with the diagnosis or someone whose loved one has been diagnosed. Daniela felt the pull as well and, as you know, she was certified while I was still undergoing treatment and together we created Insight Coaching. I have since been training to be a certified Life Coach and I LOVE it. It's a privilege to be able to pay forward the support I received from so many when I needed it.

Yes, Insight Coaching is a business, yet we offer a complimentary sample session to anyone who requests it and has not worked with us before. My commitment is that each person I work with experience their diagnosis with purpose, grace & ease. I am clear that just one conversation will make a difference in the life of a person willing to be coached and I invite you to accept my offer of a sample session and use it to your benefit with no strings attached and feel no obligation to be a client. I want to give back and it moves me to be a contribution in the lives of others.

Our url is http://www.InsightCoaching.US

Happy Independence Day xoxo

2010-07-02T21:39:00.004-04:00

It's been many months since I've posted anything. Well, last week I received my CT Scan results: NEGATIVE. It was July 16, 2008 when I was told I was "cancer-free" (at least as cancer-free as one can be). Come July 16, 2010, it will be two years that I have been "caner-free."

I can say without hesitation that having cancer was one of the best things that ever happened to me. The bonus gift was that I got to stay alive.

Return to Work

2010-02-21T18:05:00.003-05:00

Tomorrow, Monday February 22nd, I return to work.

I'm amazed at what has happened since March 27, 2007, the day I was diagnosed. It has been a week short of 35-months since I was diagnosed. And May 11, 2007 was the last day I worked before my treatment began which means it's been 33-months since I last worked.

So, when I was offered a position managing a couple senior communities with my former employer, it was amazing what came up for me. Naturally I was thrilled. I am finally back on my feet taking care of my family. In addition, I love working with seniors and I'm familiar with the company's ways of doing things so I have comfort in that. But what also came up for me was the sudden realization that I am going to be separated from my family and they will be separated from me.

Now that may not seem like much, in fact it's pretty normal for most people. You go to work, you come home. It's routine. However, for what's been almost three years, I have been relatively isolated and we have been in this one little house watching the creek flow by and spending nearly everyday with one another. Fortunately for us, spending so much time together has worked. It's actually been wonderful. Yet that is also part of why returning to work is such an emotional transition. Beau was 5-moths old when I was diagnosed. He's now 39-months old. I have been home with Beau & Daniela everyday for almost the last three years.

It's been an incredible privilege that few couples ever experience and at the same time, our closeness and need to be with one another has intensified as a result of what has kept us here, my well-being. For Daniela & me it was a powerful bond based on our partnership in keeping me alive and providing Beau a healthy and stimulating living environment. At times when it became draining and often emotionally painful, I could turn to Beau, look into his sweet little eyes and be represenced to my motivation to do what ever it took. I believe Daniela has had a similar experience. At other times when I was out in the world, and feeling too vulnerable and anxious to be out in public, probably due to my life and future being so uncertain and thus profoundly precious, I could easily retreat to the house, safely in the nest with my loved ones. At times the vulnerability that revealed itself throughout this experience, created an even closer bond between us.

Honestly, I don't believe I can fully articulate what the process and this transition has been like. What I can tell you is that preparing for me to return to work has been a bit of an emotional roller coaster for Daniela and for me. Again, it feels great to return to work and to be a self-sufficient family once again, yet I have been feeling anxious. I have to keep reminding myself that I have had a profound and life changing few years and feeling a bit anxious is to be expected.

Will I miss spending every day with my family? Absolutely. And at the same time I have noticed that Daniela can keep Beau occupied and intrigued throughout the day with ease, where I on the other hand am easily overwhelmed which he tunes into and soon after the chaos ensues. So, returning to work is great for all of us and it will equally be quite a change. Also, considering the alternative, finding my place back in the world is a great problem to have.

Temporary Unavailable

2010-02-07T09:52:00.000-05:00

If by chance your attempt to access this blog was denied in the recent past, I had temporarily made it unavailable to the public so any potential employers would not be dissuaded by my recent medical history. However, only days after making the blog "invite only," a woman whose husband was recently diagnosed with liver cancer contacted me via my sister, so she could read the blog and perhaps even speak to me about my experience and determine the best treatment for her husband.

I see this as no coincidence and after some thought I have decided that to share my experience in detail with those directly or indirectly experiencing cancer far outweighs the cost of a few potential employers who decide not to hire me because of it?

Sorry for any confusion. It took me a few days to represence myself to the commitment that we're all in this together. Not just with our health, but with all we are and all we do.

Negative is Positive

2010-01-05T00:05:00.003-05:00

Last week I had a colonoscopy and blood work done and everything came back negative. It's great to report another exam result as cancer-free. And I was awake during the colonoscopy so I got to watch the screen and see the inside of my large intestine and I also got a little peek into my small intestine. It's amazing what it all looks like. And it was great to not be doped up for the rest of the day following the procedure. There was too much of that too many times. No thank you.

My physical therapy is going well. I continue to make progress. Initially the progress I made was pretty significant. Now I seem to have found my pace and the progress I make is not so significant, but steady. I can still get pretty tired doing anything physical for very long, but I can certainly do more than I could before the physical therapy started.

I was surprised to hear a report from my physical therapist that my disability insurer contacted him and told him they thought I was ready to be off of disability, followed by their asking him if he agreed. He said he responded by asking the representative if they knew I had just had surgery days before they called. The answer was "No." Apparently, the representative suddenly had a change of heart.

I am clear that insurance companies have to keep people in check and not allow funds to wasted, but it seems what's missing is a little common sense when making such decisions or better yet, assumptions. Maybe I was bumped to the new guy's caseload and he didn't bother to read the file. I'm supporting my family on a measly disability income, itching to be healthy enough to get back to work, and they've got the gall to call my physical therapist and tell him, not ask him, but tell him they think I'm ready to return to work. Perhaps if I was claiming back pain and then helping friends move furniture, I could understand why they might tell my physical therapist I'm ready to return to work. But when they don't even know my health status and still try to get me off of disability... Unbelievable.

Okay. I'm done with my rant. Back to what matters. I've passed another round of tests. All results are negative. Happy New Year!!!

I Have Been Deported!

2009-11-30T22:04:00.000-05:00

Interestingly, as I entered the surgery waiting room this morning, I felt overcome by a wave of emotion. I immediately went back to the morning of July 16, 2008 - the morning of my resection surgery. Then I saw images of Beau playing in the waiting room with Daniela & me in the late Spring of 2008 when we had been there together for one or two of my pre-treatment procedures. I felt my love for Beau and at the same time the profound of livig this precious life. I wiped a few tears from my eyes and sat down and waited to be called.

After a short wait, I was in the pre-surgery department and the nurses began my preparation - checking my blood pressure, my pulse and asking me for my name, date of birth and why I was there today. I asked the nurse if the sedation was required for the surgery. The nurse told me it was not and informed me I would have to speak with my surgeon if I was didn't want the prescribed sedatives. He and I spoke and he agreed to do the procedure with no sedatives - only the local anesthetic as was already planned regardless if I accept sedatives or not.

At this point, after as many procedures as I have had that required sedatives, I am more than happy to tolerate temporary pain or discomfort, in exchange for clarity of mind. First, because the local anesthetic is supposed to make the procedure relatively painless. Secondly, because I have no interest in spending hours after the procedure stoned from the cocktail of pharmaceuticals routinely prescribed for outpatient surgeries such as the one I had today. And third, because their sedative of choice is Versed which has an amnestic property and I am genuinely uninterested in having amnesia for the duration of the procedure for which I am sedated. When at all possible, I actually prefer to be conscious for whatever it is I'm doing.

Just before the surgery was about to begin, one of the surgical staff asked if I was certain I didn't want a sedative. I told her I was certain and she said no more about it. Shortly after, my surgeon showed up and asked he asked if I was certain I did not want a sedative. I told him I had been up to this point, but now I began to wonder if I hadn't made the best decision. So he and I discussed the reasons and he made clear to me that sedatives can provide a minor reduction in pain, but they are primarily designed to keep the patient relaxed and relatively unreponsive during the procedure since the patient is awake the entire time. Sedation keeps the patient from getting anxious or nervous which will cause a patients' blood pressure will rise, which will make things more difficult for the surgeon and staff. With that understanding, I told him to go ahead and skip the sedative. They reassured me a sedative would be immediately available should I change my mind. From what I understand, even when a minor outpatient surgery is performed, the patient is on an intravenous line - just in case something goes wrong, there is instant access to the intravenous system.

Well, everything went perfectly. The surgery was simple and successful and I no longer have a port. Or as my friend Jacquie said, "I have been deported!" Plus, I got to experience the procedure conscious and sober and even got to see the port after it was removed from my chest. I was amazed at how big it was. It looked somewhat like a two-sided stethoscope only not as broad but a little thicker (over one inch thick). I'm amazed the port sat almost an inch deep into my chest muscles. I had no idea.

Today I got one step closer to closing this chapter and it feels great.

48 Hours From Now

2009-11-28T22:00:00.000-05:00

On the morning of Monday November 30th, I am scheduled to have my port removed. I am VERY MUCH looking forward to the removal of this foreign body from my chest. Not much else to say.

48 hours from now, it will be gone.

Negative Scan Results

2009-11-17T19:27:00.003-05:00

Today was a great day. I saw my Oncologist and he informed me that my PET Scan was negative. Then he informed me that I no longer need to be on Coumadin effectively immediately, which allowed for two procedures to be scheduled: out-patient surgery to remove the port-o-cath from my chest & a colonoscopy, both of which were postponed until I was off anti-coagulants. So, not only did I receive good news about about my scan my I am finally able to get a little closer to the end of this chapter. Or so I hope.

I felt no anxiety about the PET Scan because I believe there will be no reemergence of cancer in my body. However, I did experience a surprising, yet very short moment of anxiety while I sat across from my Oncologist as he looked on the computer for my scan results. I was convinced the results would be negative, but for the five seconds I waited to hear it form him directly, I must admit my stomach fluttered with anxiety.

The negative scan results were good news. Being told my port-removal surgery and colonoscopy were going to be scheduled was great news. I am tired of having a foreign body (the port-o-cath) attached to my chest directly under my skin. And the colonoscopy can spot pre-cancerous polyps, which I would be surprised to have this soon following chemotherapy, but could still exist. And obviously, I (or anyone else for that matter!) would want them removed. Really, for me the colonoscopy seems like the final step in knowing without a doubt that I am 100% cancer-free.

And that brings me to the emotional side of this. I am still not out of woods. Physically, I still have a significant amount of physical therapy before I can be back to normal. And emotionally I am also still finding my way back to "normalcy." It seems it's still a bit of a roller coaster ride. I imagine as time goes by I will return somewhat to "normal." And for all I know, "normal" may not be what it once was which is fine too.

PET Scan

2009-11-10T23:26:00.003-05:00

Wednesday November 11, 2009 I have a PET Scan first thing on the morning. I don't have any Scanxiety. Feeling good about it. My doctor will inform me of the results during my appointment next week.

Out of Shape

2009-10-21T21:34:00.002-04:00

Physical Therapy is going well. I now realize how out of shape I really am.

Found!

2009-10-12T19:13:00.003-04:00

I have found an exercise bike! Jim Swartz a local Physical Therapist from Auburn, NY plans to deliver an exercise bike he owns, which has the same design as the Schwinn Aerodyne, to me tomorrow. I am very excited about this and incredibly grateful. Thank you Jim.

Also, I met with my Oncologist last week and my blood work came back with no problems. I will have another PET Scan and more blood work in November. My visits at the Coumadin clinic have gone well and I go in to the Coumadin Clinic tomorrow for another checkup.

Things are looking up for me (as long as we're not talking about the world of professional sports!).

Friday's Physical Therapy Appointment

2009-10-04T20:55:00.004-04:00

On Friday, I saw David McCune - a local Physical Therapist - and I feel good about the plan he came up with. He believes I will become healthy again by following a three stage process - first regaining my endurance, then my strength, then my power. My understanding of the three stage process is the following: build up my endurance and once it increases to a healthy level, to then increase the effort I put into my exercise to build my strength so that I can eventually develop the power my muscles I need to handle more than just my own weight and have my power back.

In all honesty, hat may not have been exactly what Dave said, but I couldn't sleep on Thursday night so I was more than a little foggy on Friday morning.

To do this, he wants me to find an exercise bicycle, preferably a Schwinn Airdyne Exercise Bike, which uses a fan (as resistance) in place of the wheel and a monitors the amount of energy I exert while doing it. I'm hoping to one (or a comparable one) I can borrow from a friend because I certainly can't afford to buy one and the cost of going to their office 3, 4, 5 times a week is not somethign we can afford.

So if you're local and you have have one currently being used as a clothing rack, I'd love to borrow it!

Physical Therapy

2009-10-01T13:33:00.005-04:00

On Friday I will have my first consult with a local Physical Therapist. I am very much looking forward to this meeting and getting the ball rolling.

Feels Like Chemo

2009-09-22T23:06:00.004-04:00

Throughout the day I experienced a strange but familiar feeling - the toxic sensation of chemo running through my veins. Also, as I went about my day, my mind didn't seem as sharp as it normally does - or at least as sharp as it has been of late (my mind is still not 100% as a result of my 12 post-surgery chemo treatments). In the early afternoon, I was at a traffic light and when it turned green, I took a left hand turn only to realize my right blinker was blinking (fortunately I was in the "left only" lane).

Side note: I never make these kinds of driving errors.

As I completed my turn, I thought it a bit odd and went about my day.

I couldn't quite put a finger on it and it wasn't until this evening that I put it all together and realized it must be some chemo working its way out of my system. That's a good thing but it is definitely creepy. Chemotherapy is a very unpleasant experience and not something I was to experience again. And if it went in, I suppose it will find its way out again.

Correction

2009-09-22T15:53:00.001-04:00

My appointment with my primary care physician was not on Monday. It's scheduled for Thursday. See ya then.

Inspiration

2009-09-18T13:34:00.001-04:00

I am writing this blog entry because I feel Daniela's entry about Insight Coaching does not do it or her any justice. Insight Coaching was not just a good idea Daniela had. Insight Coaching was born of Daniela's commitment to making sure my treatment was the best it could be at all times. We both continually experienced breakdowns in communication with nearly every doctor we dealt with. Had we simply accepted their answers and recommendations without truly understanding them, my cancer treatment would not have been as aggressive as it evidently needed to be. I don't only blame the doctors, but the the system and the facilities as well.

That being said, as time went on, Daniela soon found herself having conversations with people in need of clarity regarding the medical decisions they were making. After many, many months of these conversations, Daniela saw the difference these conversations made for those who called on her, not to mention the difference it made for Daniela. What became apparent for her was that most people already know what they want, but not all have a person in their life with whom they can call upon to help illuminate their path through all of the emotional ups and downs that occur in our most stressful times - the times during which we have the most difficulty seeing, yet have the greatest need to be able to see.

Daniela's decision to become a Life Coach is much more than a business decision. It's the next step in the natural progression of who she is and I am excited for her and those who have the privilege of working with her.

A Diagnosis is Finally Here

2009-09-17T14:03:00.003-04:00

I spoke to my Pumonologist yesterday. She has diagnosed me with Extreme Deconditioning as a result of having cancer, chemo, radiation, surgery, an embolism and the sedentary lifestyle which resulted from it all. Her recommendation is rehabilitation and believes, due to what she refers to as my anaerobic state, I will require anywhere from 6 to 16 weeks of rehab.

This is GREAT news! I am thrilled that my diagnosis is one in which the treatment can completely cure the symptoms. I will see my Primary Physician on Monday and anticipate an immediate referral so I can get back to a "normal" life.

Might this blog actually be coming to end???? [laughing out loud!!!] I sure hope so.

Very Uncharacteristic of Guthrie-Sayre

2009-09-08T15:39:00.003-04:00

I should clarify.

I called my doctor a week ago Friday and was told by her staff that "this is her ICU month" and therefore she is very busy. If I do not hear form her by the end of the day today, I will call her tomorrow.

In my world, I at least deserve a phone call from my doctor or her staff acknowledging a wait time very uncharacteristic of Guthrie-Sayre.

And We Wait

2009-09-06T01:33:00.002-04:00

It's now been over two weeks since my Cardio-Pulmonary Stress Test and I still have not heard from my doctor. This is something I am definitely unfamiliar with.

Waiting For the Test Results..

2009-08-23T03:21:00.001-04:00

Friday's test was a tough one. I hope to receive the results this coming week.

Sooner Than I Expected

2009-08-18T18:39:00.003-04:00

This afternoon I spent time with Daniela & Beau at the swimming hole again. This is day two of not hiding my pouch and instead just taping it up and taking off my shirt. It feels good to be shaking off the weight of my concern about it being seen. And this ease I am having with it is actually showing up sooner than I expected.

Wow. I just looked out the window and the sun is shining through the rain. Quite beautiful.

Anyway, cooling off in the creek is such a privilege during this little heatwave we're having. And the heatwave is the reason for the change. I just couldn't keep going down to the swimming hole covered in sweat without getting wet and I wasn't going to swim in my shirt to hide my pouch. That would be like someone going to a nudist beach and being the only one walking around in their underwear. I think you end up standing out more that way.

Yeah, a bandage connected to my abdomen appears a bit weird, but like I did, most get over it pretty quick or wonder what it is but just don't bother to ask. The kids are the ones who stare at it and wonder what the hell it is. To tell you the truth, it's actually easier that way.

A Little Freedom with Irrigation

2009-08-16T20:48:00.003-04:00

This evening I finally got the courage up to take my shirt off and submerge myself in the creek. The last time I floated in water was two years ago in the pool at the Gerson Clinic in Mexico. (For those of you wondering how a chlorinated pool could possibly be okay for someone on Gerson Therapy, you are on the right track - the clinic has a hydrogen peroxide pool.)

So, why would I need courage to take my shirt off? It's just where I am with my body right now. I am happy to tell anyone in the world I have a colostomy, but having people see a pouch hanging from my abdomen has been difficult for me, especially during the days when I was not regular and there was never a moment of certainty. I also folded up the pouch and taped it up so it occurred less as a pouch and more as "cover" of some sort. I have always known I would eventually not care if people saw it, but I didn't know when that day would be. It seems to be on its way. No, no. It's not here yet. It was after dusk when I went to the swimming hole. I played it safe.

And another factor that has helped is that I have been successfully irrigating for the last two weeks. And in case you forgot, irrigation is nothing more than a daily water enema that literally flushes me out for the day. Once I am certain my large intestine is trained, I will be able to wear something along the lines of a wax band aid over my stoma. It will cover the stoma since I can't find a small enough party hat.

Anyway, since I began irrigating I have had no need for a pouch. I still wear one as an "insurance policy." My surgeon made it clear there is no guarantee my pouch will remain empty throughout the day for quite some time. Just because it has remained empty thus far doesn't mean things won't change. Apparently certain foods can cause irregularity as well as...well...we all know what beer can do, should I begin to drink beer again. So, we'll see. But the bottom line [he-he] is that today was a good day.

I think I'll get back into the water tomorrow.

Cardio-Pulmonary Function Test

2009-08-07T15:33:00.003-04:00

My Cardio-Pulmonary Function Test has been rescheduled for August 21st because my INR (international normalized ratio => used to determine blood coagulation) is too low.

Ah, well....

Better News!

2009-07-28T16:29:00.002-04:00

I forgot to mention in the previous entry that my doctor also recommended ibuprofen for hematoma pain relief. Last night, I applied a hot water bottle to the incision area numerous times and also took ibuprofen and I am experiencing tremendous relief. Now I can return to realizing how tired and out of breath I am!

Fortunately, my Cardio-Pulmonary Stress Test is less than two weeks away - Friday August 7th [crossing my fingers for some results that provide absolute clarity].

Good News

2009-07-27T13:07:00.002-04:00

The Physicians Assistant I saw diagnosed me with a hematoma. In other words, a little blood has seeped out of the artery's catheterization site and is irritating the muscle - muscles prefer blood in them, not on them. Sitting and laying down causes the blood to disperse and continue to irritate the muscle, so the treatment is hot compresses and walking.

Ouch!

2009-07-27T00:12:00.002-04:00

Okay. It's been over five days since I had my Heart Catheterization and I feel like I was hit in the groin with...something one would not want to be hit in the groin with. Perhaps a spike with a Heart Catheter attached to it. Then again, some people might enjoy that sensation. So, I will only speak for myself. I feel like I have been hit in the groin with something I would not want to be hit in the groin with. I'm not exactly sure what I would want to be hit in the groin with [I'll have to think about that], but regardless, I am finding it extremely uncomfortable.

So, I will call my Cardiologist first thing in the morning and schedule an appointment to be seen. Please, please, please only require outpatient treatment. I do enjoy breakfast in bed, but not that much. I would prefer to come home the same day and eat the following days' meals at the kitchen table.

Next Step in the Process

2009-07-23T22:00:00.000-04:00

On Thursday, I met with my Pulmonologist. Since my heart is healthy, she sent me to the Pulmonology Lab where I was tested for asthma. The design of the test has the staff attempt to induce an asthma attack. I did not have one, so therefore I don not have asthma.

The next step is a Cardio-Pulmonary Function test which I am scheduled to have in two weeks. This where I am hooked up to every type of monitor known to man and then must pedal an exercise bicycle until my body reaches the point where I am incapable of going any further. Once I reach that point, my doctor will determine whichever organ it was that couldn't keep up with the process. That organ is likely the one causing my extreme fatigue and shortness of breath. Sounds like a real treat doesn't it? Hopefully there will be a diagnosis at the end of this one.

I also met with Dr. Cagir - my surgeon - and I have been approved to begin irrigating. Once the irrigating trains my large intestine, I will eventually be able to go without a pouch and wear something more like a band aid. I am definitely looking forward to that.

Healthy Heart

2009-07-21T19:52:00.002-04:00

Well, the Cardiac Catheterization revealed a healthy heart [sigh of relief].

So, that means the extreme fatigue and shortness of breath is not a heart problem. I'm thrilled there is nothing wrong with my heart. That is great news. And part of me was hoping my Cardiologist would have found something immediately fixable, so I could be back to normal.

As you can imagine, I feel a bit stumped as far as what is causing these symptoms. Just last Saturday, I barely got off of the couch because I was absolutely exhausted and couldn't catch my breath and all I was doing was sitting. It's definitely strange and quite disheartening.

It seems as though I am slowly getting worse. Fortunately, I have an appointment with my Pulmonologist on Thursday and it is a benefit for my doctor to know my heart is functioning well because now she can run additional tests that wouldn't be run on someone with a bad heart.

PET Scan Results: NEGATIVE

2009-07-17T15:46:00.002-04:00

My PET Scan results came back negative. I have been in remission since April 15, 2009, but as of today, I have been cancer-free for one year.

That was a pretty stressful 30 seconds while on hold waiting for Dr. Sciortino to pick-up. I'm definitely shedding a few tears of joy & relief right now.

Diagnostic on My Heart on Tuesday

2009-07-17T14:56:00.003-04:00

On Tuesday I am scheduled to receive a Heart Catheterization which will provide my Cardiologist with 99% certainty as to whether my heart is causing my shortness of breath, fatigue, chest pain, etc., etc.

It is a pretty routine out-patient procedure. At least as routine as routine can be when a doctor is poking around in my heart! I'm looking forward to...well...I'm hoping they will find something easily treatable so I can return to a normal life.

Waiting for PET Scan Results

2009-07-17T14:45:00.004-04:00

On Wednesday I received my PET scan. I hope to receive the results today (Friday)...tap-tap-tap-tap-tap.

I will actually be calling for them results in the next few minutes...

Thank You

2009-07-11T10:45:00.001-04:00

Thank you for your comments on this blog and facebook as well as your emails!!!

Patient Advocacy

2009-07-09T20:16:00.008-04:00

On my June 26, 2009 blog entry I mentioned I felt compelled to share more with you about the visit with my oncologist. I said it would be my next entry. My apologies - it wasn't. But here it is now.

To give you some background, Dr. Allerton was the Oncologist I initially worked with. After he left, I was transferred to Dr. Broketta. Shortly after my first visit with Broketta, I was hospitalized for the embolism. The doctor on-call ended up being my current oncologist By the time I had been discharged from the hospital, I had seen my now, current doctor multiple times. For that reason, he asked me if he could take me on as his patient since he now had seen me more than Broketta. I agreed.

During my May visit, my doctor told me my post-treatment checkups would no longer need to be PET or CT scans. He said instead he would simply watch for markers in my blood work. I let him know the markers in my blood were never above normal even when my cancer was at its worst and would therefore not provide the information necessary to determine if the cancer returned. He said the markers were in fact higher than normal when I had cancer and would be sufficient. Since I knew I would see him again before the PET Scan was due, I chose to let it go and talk to him about it during my June visit.

During my June visit - accompanied by Daniela - I let my doctor know that all of the surgeons and oncologists I saw were clear there were not sufficient markers in my blood to use it as a guideline. He said it would then make most sense to do a CT Scan since I was a Stage II. Daniela and I asked why I would only receive CT scans and we both reminded him that I was not only a Stage II (T4), but the cancer had made contact with one of my lymph nodes which is why I was being treated as a Stage III. He then revisited my file and after reading multiple entries from Dr. Alleton and continued dialogue with the two of us, he declared that my post-treatment checkups must be PET scans due to my being a "Stage III" cancer patient.

My reason for making this post is NOT to criticize my doctor in any way - maybe the system, but not him. In the past, it may have been. However, I am very happy with him as my Oncologist. I appreciate the way he thinks and his willingness to revisit a conversation should I ask him to. Why I don't criticize him is because over the last two years I have yet to work with a doctor who in one way or another hasn't altered their diagnosis or treatment - in one way or another - following a conversation with Daniela and/or me. Now I'm not saying my doctors may not have eventually made these decisions on their own. I'll never know. But I will assume nothing.

What I am saying is that each one of us must advocate for ourselves and not simply let our doctors guide us independent of our input. I have experienced each of my various doctors revisit their decision making process(es) - again, to one degree or another - as a result of something said by Daniela or me.

It is my understanding that my oncologist has a window of fifteen minutes to meet with each patient. Then add on top of that, he started at the clinic less than a year ago. So, I would imagine most of the existing patients he picked up already had pretty descent size files. I also imagine it highly unlikely that he or any other other doctor, nurse in his position would have the time to fully review each patients file from front to back. Does that mean he's not doing his job? Perhaps inside the context of what any particular patient might expect. But I believe he is doing his job - the job he was hired to do by the clinic that hired him - hired him to do a job that requires him to provide 15 minute windows for each patient. And inside of that context I believe it is my job and the job of every patient to advocate for themselves and to pursue any and all concerns until 100% satisfied.

Daniela & I have done that from the beginning. There are times it has been very awkward and uncomfortable. And not necessarily as a result of anything my practitioners say. Sometimes the awkwardness is simply a result of what's going on in my mind - my concerns about offending or upsetting my practitioner. Yet it doesn't stop me because my practitioners must base their decisions on what they know. And Daniela & I make darn sure that what they know is everything that we know and we make sure they answer every question we have.

I should also add that I sometimes feel frustrated or disappointed when a physician seems to miss something until I mention it. A part of me wishes I could finally just rely on them to work without my constant fine-tooth-comb over-sight. And the reality is, now matter how meticulous my doctor is, I must continue to be hyper-vigilant in the oversight of my own care.

I recently watched an episode of Oprah during which, Dr. Oz stated that about 400 people die every day from medical error. That is equivalent to a jumbo jet crashing and every person on that plane dying every single day of the year. If that jumbo jet scenario were actually true, it would be front page news every day and the entire airline industry would come to a screeching halt. Yet it does happen every day in the medical industry. The number of deaths per year as a result of medical error exceeds the combination of deaths as a result of AIDS, car accidents and breast cancer combined. Their commitments to medicine are not commitments to perfection nor do they give us the right to expect it. We have every reason in the world to advocate for ourselves and our loved ones any time we are under the care of physicians.

Echo-Stress Test Results

2009-07-09T15:13:00.004-04:00

Wednesday's Echo-Stress Test was inconclusive - at least when it comes to finding the cause of my symptoms. However, it definitely confirmed something is not as it should be. Walking at a steady pace had me instantly short of breath. By the time I was jogging...well, let me just say the only reason I continued was because I was in a hospital and only feet away from my nurse and the doctors she worked under.

The test went as follows: I was hooked up to an EKG machine, then given a Echo-cardiogram [ultrasound of my heart]. Then I stepped onto a treadmill and walked slowly. The rate was increased to a steady pace, then a fast pace, then eventually jogging. Let's just say it was not a pretty sight. The initial Echo-Cardiogram revealed no noticeable problems. The EKG revealed regular heartbeat while standing still as well as while walking and jogging. The Echo-Cardiogram immediately following also revealed no noticeable problems. The Cardiologist said she would recommend a specific type of CT Scan that provides a clearer picture of my heart.

As a result of these most recent test results, my Pulmonologist called (last night) to say she referred me to a Cardiologist. I will see that Cardiologist's Physicians Assistant on Monday morning. My assumption is that the PA is setting me up for tests and not doing diagnostic work. And considering I'm now blogging about Pulmonologists and Cardiologits, I must say I am a little stunned.

Waiting...Again

2009-07-06T20:08:00.004-04:00

On Saturday, after I drove to a friends house, I got out of my car and walked...maybe 30 ft...and I was seriously short of breath. Serious like when the embolis was still pretty good size. I was tired for hours after that. I almost went to the ER. I was equally tired on Sunday.

And so, by this morning, when I woke up and I was still trying to catch my breath, I called my Pulmonologist. After some conversation, she scheduled at CT Scan for me for today. Thank heavens my new insurance company actually covers my local hospital. Traveling to Sayre, PA can get a bit tiresome.

After my scan was complete (the 2nd one that is, since they claimed the first was too fuzzy to read) the techs sent me home - code for: "It ain't an embolism." It's good news of course, but a part of me was actually frustrated. No, I don't want an embolism - that's insane. I just want a diagnosis.

I thought I was geting better by now and I thought this blog would wrapping up! I did not think I would be back to daily entries about how things are not what I had hoped...?????

Well, my Echo Stress Test is on Wednesday. If that doesn't reveal the problem, then I will be the recipient of an attempted doctor-induced asthma attack. And if THAT doesn't reveal anything, I will be scheduled for a Cardio-Pulmonary Stress Test. In the mean time, we're going to go pop in a DVD, watch a movie...and wait.

Tired

2009-07-04T16:36:00.003-04:00

I was hoping to go visit a number of friends at an Independence Day Party today, but I have been exhausted and short of breath since the minute I woke up. Definitely a bummer. I'm yawning non-stop and this after a cup of coffee...?...very strange. I am definitely looking forward to my Echo Stress Test on Wednesday.

In the mean time, to all my "American" friends: HAPPY INDEPENDENCE DAY!!!!!

Ode to Lovenox

2009-06-30T12:06:00.004-04:00

As a result of blood tests, yesterday and today, my transition from Lovenox to Coumadin is over. I have been given permission to stop the Lovenox completely and simply continue with the Coumadin - an oral anti-coagulent - for a few months or so. No more needles in the abdomen twice a day. And now my blood tests can be done at the Coumadin Clinic with a little finger tester, as opposed to having to drop in to our local Urgent Care Center and wait to be seen for a blood draw (since they don't take appointments). Apparantly, the finger tester at the Coumadin Clinic does not work when a person is on Lovenox.

Maybe I will to write a song about having to say goodbye to Lovenox so I can express the deep sorrow I feel no longer having it as a part of my dailiy life. Farewell needles.

Pulmonary Consult

2009-06-30T10:18:00.003-04:00

I had a consult today with my new Pulmonologist, Dr. Norville. Daniela chose to go with me to see Dr. Norville, as she did for my last appointment with Dr. Sciorotino. It definitely makes a positive difference to have her with me - a second mind to process the information.

Dr. Norville said my tests were not indicative of someone with lung problems. However, after review of my Echo Cardiogram in March, she said my heart does seem to expand more slowly than it contracts, which could be from a of thickening of the heart wall, as a result of stress created by the Pulmonary Embolis. She compared it to a body builders inability to do ballet, because a large amount of muscle limit can body movement. The same goes for my heart - possible limited movement from its size. Having a heart that is all buff, apparently would not make me all cool and tough - at best (or more like at worst) it would make me short of breath and fatigued all the time.

So, Dr. Norville ordered a series of tests: an Echo Stress Test (July 8th) to get a closer look at how my heart operates under stress; a Thyroid Function test to determine if my thyroid is the cause for the shortness of breath and fatigue; and a test for Mononucleosis and for Lime Disease, which could also explain the fatigue (Thyroid, Mon & Lime are all done with blood test). Mono or Lime Disease wouldn't explain the shortness of breath, but it could be reason for the fatigue. That being said, there is a possibility I currently have more than one illness. My fatigue and shortness of breath is constant, but the other day when I slowly walked up a hill, my chest began to hurt, I experienced a headache in the back of my head and I got a dizzy. Good times! So, we'll see. There could be more going on then I realize

As you can imagine, this is driving me nutz. I really hope this is something that can be treated and healed so I get back to a normal life. I can't imagine living the rest of my life fatigued and short of breath all day long. Or to experience chest pain and headaches whenever I operate at a normal pace. Or to get tired because I "played cars" for twenty minutes on the floor with my son, which is something I will happily do, but it sure is a bit odd to have rest after rolling Matchbox cars around on the carpet. [I'm actually laughing right now because it just seems so insane.] And should that be the case, to be alive and cancer-free with such a beautiful family is a life I am absolutely thrilled to be living.

As far as cancer-free goes, I have a PET Scan scheduled for July 15th. A recurrence of cancer might explain how I feel, but not let's not drive off of that bridge unless we get to it. I don't think it's a recurrence. Justa gut feeling. Should my scan be negative, I will celebrate my one-year anniversary of being cancer-free. If you just imagined confetti, party hats and those silly noise makers that unroll when you blow through them, we are on the same page. That will be pretty damn awesome.

Update...Long Overdue

2009-06-26T10:56:00.003-04:00

I have not posted a health update follwing my most recent round of scans and tests. Speaking to my sister about it last night, I realized I just wanted to be done with all of this. Ya know. No more blog posts. No more of your daily or weekly checkups on the blog. I am SO OVER all of this. And, albeit the cancer is gone, my health issues are not.

So here's the latest:

On Friday June 12th, I called my Nurse Practitioner, Sue Domico, because I - then and now - experience a great deal of fatigue on a daily basis as well as shortness of breath and light-headedness when I walk at a normal pace. Should I actually exert enough energy to participate in a normal days activites - equivilent to any healthy man my age - I am exhausted at the end of and all the day that follows. And in addition to being exhausted the following day, I also don't think completely clearly and have no motivation to the point that I have to force myself to do just about anything. My concern was that I had another Pulmonary Embolism.

So, Sue moved my CT Scan up from Wednesday June 17th to Saturday June 13th. I shared my concern with the CT tech and let her know I was going to wait until my resluts came back from the Radioloist before I did anything. The CT tech wasn't allowed to share the actual results with me, but she had shared my concerns with Radiologist and after reading my scan, he told her to send me home.

On Tuesday June 16th, Daniela & I met with my oncologist, Dr. Scioritino. He informed me that I did not have lung cancer. I was a bit surprised by his statement. Lung cancer had never even crossed my mind. He also informed me that the embolism had shrunk significantly and was not the reason for my symptoms. After some discussion about the possibility of lung damage - maybe permanent/maybe not - he scheduled me to have a Pulmonary Function test. However, since the CT scan revealed significant shrinkage of the embolism, he also referred me to the local Coumadin Clinic in Ithaca so I can eventually stop the Lovenox and take Coumadin for a few months.

Oh, Lovenox...how I will miss you and the joys of spiking myself in the abdomen with a needle twice a day. Ho-humm.

There is more about this appointment that I feel compelled to share with you, but that will be in the next post, so that I can complete this one regarding my current symptoms and treatment.

The day following my meeting with Sciorotino, I was back in Sayre, PA at my Pulmoary Function Test, sitting in a glass box blowing in and out of a tube.

Interestingly, the tech - who - again - can not provide a diagnosis, said for the most part, I did very well. That made the reason for my symptoms about as clear as mud...??? I have a consult with a Pulmonologist on Monday in Sayre. I hope to know more or schedule more tests at that meeting.

My Coumadin Clinic appointment was the other day - Tuesday June 23rd - and seemed pretty routine. Today is Friday and I have taken 5 mg of Coumadin for the past three nights. I will have my blood drawn early this afternoon, so any necessary adjustments to my Coumadin dosage can be made before my next scheduled dose this evening. Hopefully, all will go well.

2009-06-04T10:01:00.005-04:00

Greetings All!

I wanted to share with you all my new business, Insight Coaching, and invite you to take a look at the website...I would value both your feedback as well as your referrals!

WWW.InsightCoaching.US

The Mission of Insight Coaching:

Insight Coaching partners with clients who seek powerful conversations which result in the generation of their extraordinary life.

Insight Coaching assists clients seeking clarity and confidence in the areas of medical decision making, maintaining deep and meaningful relationships, and vital connectedness to their life work and purpose.

My Vision is of a future that includes:

• Health & Life Coaching is made available and accessible to any patient, caregiver, or family member who desires one.
• Partnership with a Health Coach will have both a profound impact on the nature of recovery, quality of life and mortality of those facing illness.
• The culture and norm in the arena of Health Care is one that includes patients and caregivers working with a Health Coach.

In Gratiude,
Daniela

A Company With a Great Commitment

2009-06-03T13:13:00.005-04:00

While I was doing chemotherapy, Comfort Care Foods (out of Burlington, Kentucky) offered to send me a number of their products to taste test. After I read about their commitment to manufacturing healthy, delicious food for people on chemotherapy or radiotherapy treatments, I decided to take them up in their offer.

I received 2 large jars of soup, 2 loaves of bread and a variety of cookies. I didn't immediately eat the food because I wanted to test it a few days following my next chemotherapy treatment, in order to see if their products actually tasted good when my taste buds were at their worst. I went in for chemotherapy and shortly after my treatment began, I was listening to a fellow patient (and his wife) tell me about how he wasn't eating anything because he had no appetite and nothing tasted good while on radiation treatment. He had lost a lot of weight as a result. I immediately offered him the box of food I had at home and promised to bring it in the next day. The soups had tons of healthy ingredients, including whey protein which I believe to be a very important supplement for people undergoing treatment and struggling to maintain their weight.

I immediately informed the folks at Comfort Care about what I had I had done, and hoped they would understand, and offered to test their food if they were willing to send me another box of samples. They completely understood and were more than happy to send me another box.

The soup is just oustanding. Generally, I use the word pungent to describe smell, but it can be used to describe flavor and in this case, the flavor was quite pungent which is a really good thing. Chemotherapy & radiation seriously dull the taste buds and to eat something that can stimulate my taste buds when it seems nothing else can even come close, is indeed a very good thing.

The Whole Wheat Bread was delicious. The only down side was the use of High-Fructose Corn Syrup in the recipe, which I believe to be taxing on the liver and therefore I would prefer to avoid it, considering my treatments were taxing enough on my liver. However, it was so delicious...I ate it anyway!

The cookies were super sweet. Had I had these cookies around when I was undergoing radiation treatment, I would have been in heaven. Why? Because they were so highly sweetened, the flavor would have definitely broken through my nearly "inoperable" taste buds.

I would have been even happier if their products were organic. Currently they do not have an organic line, but I was happy to eat conventional food considering what a struggle it was at times to keep up my appetite.

So, I give Comfort Care Foods a huge thumbs up!

1) for their commitment to creating delicious foods for those who are receiving chemotherapy and/or radiation, and

2) for succeeding in that commitment and making some deliciously good food. I wish Comfort Care Foods good luck and a successful future.

The Latest

2009-05-22T10:20:00.004-04:00

I totally forgot to post an update from my last doctor's appointment about 2 weeks ago. It was a standard appointment. The doc said my blood work looked good and he saw no cancer markers. Pretty routine.

As far as how I am feeling, this pulmonary embolism isn't as bad as it originally was - I can go for walks as long as I don't move too quickly. I don't get short of breath or dizzy like I used to, but again, I do get very tired. When I visit friends and spend time talking or playing guitar and singing, I come home exhausted. Oddly I tend to feel the majority of the fatigue the following day - I simply have no energy.

I sleep, on average, 11 hours a day. Sometimes 12, sometimes 10. But during the remaining hours that I am awake, I tend to drink a cup of coffee about half way through to keep my energy up. My doctor informed me I could have lung damage as a result of the embolism, but I didn't ask him about it. Right now, I only want to deal with what I know to be true. If it is so, I'll drive off of that bridge when I get to it. I'll deal with whatever comes the best I know how.

I'm happy to say I wrote a song the other day. It has been a long time since I have written a song. It's a lot - to reflect upon these last two years of my life in addition to thoughts about what my friend John is dealing with. The doctors can not treat him. All he has left is time with his loved ones and all the other extraordinary people in his life. Not everyone has the opportunity to say and do what matters most with those dearest, assuming the doctors are correct. It seems a peculiar privilege to have such an insight. But I say seems because I obviously have no idea what it is truly like for him. What I do know is that when I am with him, his spirits are amazing. You are an incredible person, John. God Bless You.

Should my health remain good, I will probably not write frequently other than sharing my monthly doctors updates. Thanks for all you have provided me with your listening.

Love Bert

The Ramble-n-RollReview: A Wonderful Event

2009-05-18T10:07:00.003-04:00

The Ramble-n-Roll Review Benefit for John Reilly was an incredible invent. Rarely have I experienced so much love and vulnerability with so many people at one time. Emotionally, musically and financially, the benefit was a success.

Ramble-n-Roll Revue: A Concert Benefit for John Reilly

2009-05-06T10:31:00.006-04:00

It has been confirmed. My friend, John Reilly has Stage IV Pancreatic Cancer. It's breaking my heart as well as the hearts of many others. John is so much to so many people, I don't even know how to write about it. So, instead, I want you know about a benefit for him happening for him.

Sunday May 17th

the Polish Falcons

75 Pulaski St Auburn, NY

12 noon to 8 pm
minimum donation: $10.00

Performers will be Bert Scholl & Kevin Kinsella, The Villagers, Sons of the Bunkhouse, Hoopes Park Pond Explosion, Deauville Ramble Society, Teenager, Infra Red Radiation Orchestra, Bob Piorun, The Disclaimers and the All Star Tribute to John Reilly.

Pretty Darn Tired Lately

2009-05-05T09:09:00.003-04:00

I had thought by now I wouldn't be posting much on this blog. I figured at this point, the blog would just be for what are currently my quarterly scan results. And, I hadn't planned on the Pulmonary Embolism or the Shingles. It seems the Shingles are starting to go away. Fortunately, they weren't too bad. In fact the pharmaceuticals I took for them were worse than the Shingles themselves. And since embolisms, Shingles, and the pharmaceuticals prescribed for Shingles make a person tired, I've been pretty darn tired lately. It's definitely not uncommon for me to sleep 10 to 12 hours any given night.

The Pulmonary Embolism is definitely still present. I have moments during which my energy levels feel relatively normal, but when I exert myself during those times, i.e., walk for more than 1000 feet, I find myself without much energy and then not just tired by the end of the day, but exhausted. I definitely can't run yet or even walk at a fast pace. However, I do have more energy than I did when I was originally diagnosed with the embolism and that's certainly a plus.

My next scheduled visit with my oncologist is mid-month and I look forward to hearing that it has shrunk significantly.

Update

2009-04-26T01:08:00.003-04:00

So far my Shingles only feel like a sunburn combined with occasional sore muscle. I understand it can be much worse and even in places far more uncomfortable than the shoulder. So far, the shoulder and chest is all I have to show for. The steroids (methylprednisolone) and the anti-viral (famciclovir) I'm taking have me feeling a bit off, but they don't even compare to the experience I had a while back with the antibiotics Cipro and Flagyl.

I haven't written much lately because I recently found out that my friend John may have advanced stage Pancreatic Cancer. It's kind of hard to consider my most recent health issues any kind of a problem when he and his loved ones are possibly facing a far worse problem than I ever had. We have been praying for him and will continue to as he receives more tests this coming week.

The Fun Still Isn't Over

2009-04-21T12:10:00.005-04:00

So, just when I thought it couldn't get any better...I now have SHINGLES!!!

WHI-HEW!!!!!!!! And yes, it is a result of chemotherapy treatments because chemo is an immuno suppressant treatment, which gave the virus the opportunity to find its way out. Good times. And I thought the embolism was as fun as it could get.

Well, I am alive and cancer-free and that's a good thing. It just all a bit insane if you ask me. Sure as heck hope it doesn't get too painful. Apparently, the pain factor can vary. We shall see.

2009-04-17T12:59:00.001-04:00

PET scans read:

CANCER FREE !!!!!!!!!

No PET Scan Reults Yet...

2009-04-16T19:08:00.003-04:00

It's now 7 PM and I have not recived my PET scan results.

This morning I met with my doctor (Dr. Sciortino) and he told me the CT scan revealed no new embolisms. That is good news. He will keep me on the anti-coagulants for 6 months as long as I have no more problems between now and then.

The PET scans were not available by my appointment time, so Dr. Sciortino told me he would call once he received them. The Radiology Department said the results may not be available for as long as 48-hours after the scan was done. Since the scan was done on Wednesday, it is likely I will receive the results on Friday. Sciortino is relatively new to Guthrie and I have a feeling he just didn't know it could take so long to receive PET scan results.

Fortunately, my trip to Guthrie this morning was not a total loss, since Dr. Sciortino needed to do a physical examination and review my blood work anyway. Also, he told me it is highly likely there has been no recurrence. However, I will be listening keenly for the phone on Friday.

All Scans Are Complete

2009-04-15T23:51:00.003-04:00

All scans are complete. Late Thursday morning, I should have my test results. It will be a relief to know what's next - one way or the other.

Short Walk

2009-04-12T00:16:00.003-04:00

I took the dog for a short walk this afternoon. I walked about 1/4 mile up the road and back again, then down to the waterfall and back. I was amazed at how slowly I had to walk to avoid losing my breath. I sure as hell hope the chest CT reveals some shrinkage of the embolism because this is getting old. Will I do what I have to and is this better than cancer? Of course. But it is getting a bit old.

Pretty Low Energy Lately

2009-04-10T01:24:00.004-04:00

I've been pretty low energy lately. Or should I say, as soon as I move at a pace faster than slow I become short of breath. It is a bit anti-climactic to have this embolism slowing me down just as I'm about to have my most important scans. But then again, one consistent theme in this entire dignosis has been the constant reminder for me to slow down. A healthy choice considering it has never really been my way of doing things - at least until I was diagnosed.

Other than that, not much to report. I did have an opportunity to try a new food product designed for people receiving chemotherapy or radiation. I'll post an entry about that sometime very soon. I think it's something worth sharing.

Feeling a Bit Strange (and Uncertain)

2009-04-02T00:38:00.005-04:00

I was discharged from the hospital this afternoon. My doctor said he is certain I have a Pulmonary Embolism and not a tumor. He also told me to TAKE IT EASY. At the most, I have his permission to take one 10 minute walk a day - or should I say strolls. He believes my symptoms on Monday were likely a result of doing too much on the days between Saturday (my previous discharge day) and Monday (the second time I was admitted). And I wasn't doing much, so I am really taking it easy this time.

The image on the right is my MRI. The black crescent-like shapes are my lungs and the white areas within the lungs is the blood made visible with contrast. As you can see, there is not nearly as much blood going into the right lung as there is in the left.

And it has been one hell of a week. I am feeling a bit strange. Strangely relaxed about the whole thing. At one point on Tuesday, when I thought I may have cancer again and considered I might need another round of radiation and chemotherapy, I found myself surprisingly calm about the whole thing. Up until this point, it seemed any more chemo or radiation would be maddening or an absolute nightmare. But at that point on Tuesday when I believed chemo & radiation were a possibility, I was actually happy to get the ball rolling. Whatever it takes, I want to stick around. Fortunately, I have yet to have to face such a decision.

What's even stranger is as I think about it and reflect upon what went through my mind on Tuesday, it seems my relief in response to the possibility of doing another regimen of chemo & radiation was it's familiarity. That may sound crazy to you, but it's a strange experience to be out of work for just five weeks short of two years. My treatment and intention to heal has been what drives me. And I have gotten quite good at being the patient. I experience comfort and ease whether I am inpatient or out-. And I have learned how to manage the burden of the side-effects and still stay positive in the face of difficult circumstances. Yet I have no familiarity with a return to a "normal life" after all I have been through and all the time has passed.

So, would I rather receive more chemo & radiation therapy instead of finding my way back to "normalcy"? ABSOLUTELY NOT!!! I haven't lost my mind. But as I process all that has made up this emotional roller coaster ride, logic is not what comes to mind. Hell, I don't think emotions are ever logic based. I think they just seem that way when we agree with them or when they work in what we believe to be our favor. My emotions have been blowing my mind from the very beginning of this diagnosis. But they are not necessarily the source of my decisions. At least not when fear is at the forefront of my mind. I very much look forward to being done with all of this. No question. And come mid-April, the scan results just may have it be that way.

Very Good News

2009-04-01T14:21:00.002-04:00

My doctor has seen me and discharged me. He has confirmed that the embolism diagnosis is correct. I am good to go and will have a CT & PET scan mid-April. I feel very positive about the whole thing.

Very Positive Projection

2009-04-01T10:15:00.003-04:00

I just spoke with two of the Resident doctors here and asked about the possibility of cancer metastasis within my Pulmonary Artery. The senior resident explained that an embolism in the Pulmonary Artery is uncommon. For that reason, the radiologist wanted to rule out the possibility of a cancerous tumor.

The residents also let me know that the odds of cancer in the Pulmonary Artery are extremely low. And then even lower than that. They recommended I not worry about it being anything other than an PE.

Yes, I am delivering this to you with a degree of uncertainty, but I thought it worth it mentioning considering how scary the possibility of metastasis is.

There And Back Again

2009-03-31T19:38:00.004-04:00

Late yesterday afternoon, I had symptoms indicative of more embolism problems: light-headedness, fatigue, tingling in my extremities and shortness of breath, plus an ache under my right arm between my bicep and tricep (I'm actually not sure if the last one is an embolism symptom). After a couple phone calls to the Hematology Department at Guthrie in Sayre, Daniela, Beau & I were on our way to the Emergency Room.

We got there at 7 PM. After CTs of my head and chest both came up negative for additional blood clots and/or masses, they admitted me. At 5 AM. Gotta love emergency rooms. Fortunately, Daniela & I agreed at midnight that it was time for Beau and her to go home. We were pretty positive I wan't going anywhere and I promised to give her a call with any updates.

Since I experienced the said symptoms and both tests showed no changes in the size of the embolism, I was admitted for observation in hopes that a determination might be made. Yet four days is not really a significant amount time to see shrinkage in embolisms.

At 12 o'clock this afternoon, I received an MRI. The intention of the MRI was to determine if the supposed embolism was in fact a tumor. Were the MRI to reveal blood vessels in the mass thought to be the embolism, it would be proof of a tumor in the pulmonary artery. Fortunately, no blood vessels were revealed. Yet because the mass is so small, a tumor can not yet be ruled out. And because the mass has not shrunk, an embolism can no longer be confirmed.

Even better: Daniela and I waited from noon, when I had the MRI, until sometime after 5 PM this evening before I was told no determination could be made. For the first four hours, my stomach was a wreck - as I waited and I wondered if the cancer had metastasized. Daniela wasn't exactly having "a day in the park."

With no proof of an embolism and no guarantee the mass is not a tumor, I must wait until April 13th - when I have another CT scheduled - so my doctor can hopefully make a clear determination.

And that is all we can do because the nameless material can not be biopsied. There is no way to get to it with a catheter because the pulmonary artery is located between the heart and the lungs. And a PET Scan would serve no purpose because the mass is still too small for the PET Scan to pick it up. Quite a lousy situation to be in, but for some reason, my gut tells me it is only an embolism. Only an embolism. Now that's some perspective! Well...hopefully on the 13th we'll have some answers. In the mean time, the anxiety is over because there is nothing else I can do...but wait.

Discharged

2009-03-28T14:49:00.003-04:00

I was discharged from the hospital early this afternoon and it's definitely nice to be home. I am experiencing significantly less pain when I inhale and not as short of breath as I was. So, my doctor discharged me with a prescription for Lovenox which I am to inject abdominally twice a day every twelve hours until I am directed otherwise. It will likely be for a month or so then followed by Coumadin for another five months or so. When I am CT scanned for cancer/masses in the middle of April, it will also include a chest scan to check the status of the embolism.

My doctor did not agree with the explanation one of the chemo nurses gave me - that chemotherapy causes the lining of the veins and artery to shed. But he did say that chemo can be a cause of blood clots/embolisms. So, I'm not 100% clear on the origin. However, my doctor informed me that he will be studying my scans, blood work, etc. in order to determine if I have a genetic predisposition for embolisms or if it was a result of my treatment. Fingers crossed - hoping for the latter.

Today is a beautiful day - over 60 degrees with sunshine - and I am definitely putting this computer down and going outside to relax and think about how I have no chemotherapy scheduled. PERIOD. What a wonderful feeling.