Tuesday, December 27, 2011
Friday, December 23, 2011
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.
Monday, December 19, 2011
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.
Friday, December 16, 2011
Wednesday, December 14, 2011
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.
Friday, December 9, 2011
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.
Wednesday, November 30, 2011
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.
Tuesday, November 29, 2011
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.
Thursday, November 17, 2011
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.
Tuesday, November 8, 2011
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...
Saturday, November 5, 2011
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.
Thursday, November 3, 2011
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.
Saturday, October 29, 2011
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
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
Thursday, October 27, 2011
Tuesday, October 25, 2011
Monday, October 24, 2011
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.......
Thursday, October 13, 2011
Wednesday, October 12, 2011
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.
Friday, October 7, 2011
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.
Thursday, September 29, 2011
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 ; )
Friday, September 23, 2011
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.
Friday, September 16, 2011
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!
Tuesday, September 13, 2011
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.
Monday, September 12, 2011
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.
Thursday, September 8, 2011
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
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.
Tuesday, June 28, 2011
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.
Thursday, April 7, 2011
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.
Thursday, March 31, 2011
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!
Wednesday, February 23, 2011
Saturday, January 1, 2011
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.