Where I Am In All of This...

I Have Been Deported!

noreply@blogger.com (Robert Scholl) — Tue, 01 Dec 2009 03:04:00 +0000

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

noreply@blogger.com (Robert Scholl) — Sun, 29 Nov 2009 03:00:00 +0000

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

noreply@blogger.com (Robert Scholl) — Wed, 18 Nov 2009 00:27:00 +0000

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

noreply@blogger.com (Robert Scholl) — Wed, 11 Nov 2009 04:26:00 +0000

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

noreply@blogger.com (Robert Scholl) — Thu, 22 Oct 2009 01:34:00 +0000

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

Found!

noreply@blogger.com (Robert Scholl) — Mon, 12 Oct 2009 23:13:00 +0000

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

noreply@blogger.com (Robert Scholl) — Mon, 05 Oct 2009 00:55:00 +0000

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

noreply@blogger.com (Robert Scholl) — Thu, 01 Oct 2009 17:33:00 +0000

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

noreply@blogger.com (Robert Scholl) — Wed, 23 Sep 2009 03:06:00 +0000

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

noreply@blogger.com (Robert Scholl) — Tue, 22 Sep 2009 19:53:00 +0000

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

Inspiration

noreply@blogger.com (Robert Scholl) — Fri, 18 Sep 2009 17:34:00 +0000

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

noreply@blogger.com (Robert Scholl) — Thu, 17 Sep 2009 18:03:00 +0000

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

noreply@blogger.com (Robert Scholl) — Tue, 08 Sep 2009 19:39:00 +0000

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

noreply@blogger.com (Robert Scholl) — Sun, 06 Sep 2009 05:33:00 +0000

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..

noreply@blogger.com (Robert Scholl) — Sun, 23 Aug 2009 07:21:00 +0000

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

Sooner Than I Expected

noreply@blogger.com (Robert Scholl) — Tue, 18 Aug 2009 22:39:00 +0000

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

noreply@blogger.com (Robert Scholl) — Mon, 17 Aug 2009 00:48:00 +0000

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

noreply@blogger.com (Robert Scholl) — Fri, 07 Aug 2009 19:33:00 +0000

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!

noreply@blogger.com (Robert Scholl) — Tue, 28 Jul 2009 20:29:00 +0000

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

noreply@blogger.com (Robert Scholl) — Mon, 27 Jul 2009 17:07:00 +0000

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!

noreply@blogger.com (Robert Scholl) — Mon, 27 Jul 2009 04:12:00 +0000

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

noreply@blogger.com (Robert Scholl) — Fri, 24 Jul 2009 02:00:00 +0000

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

noreply@blogger.com (Robert Scholl) — Tue, 21 Jul 2009 23:52:00 +0000

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

noreply@blogger.com (Robert Scholl) — Fri, 17 Jul 2009 19:46:00 +0000

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

noreply@blogger.com (Robert Scholl) — Fri, 17 Jul 2009 18:56:00 +0000

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.