Monday, November 30, 2009

I Have Been Deported!

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.

Saturday, November 28, 2009

48 Hours From Now

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.

Tuesday, November 17, 2009

Negative Scan Results

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.

Tuesday, November 10, 2009

PET Scan

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.

Wednesday, October 21, 2009

Out of Shape

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




Monday, October 12, 2009

Found!

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!).

Sunday, October 4, 2009

Friday's Physical Therapy Appointment

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!

Thursday, October 1, 2009

Physical Therapy

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.


Tuesday, September 22, 2009

Feels Like Chemo

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

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

Friday, September 18, 2009

Inspiration

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.

Thursday, September 17, 2009

A Diagnosis is Finally Here

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.

Tuesday, September 8, 2009

Very Uncharacteristic of Guthrie-Sayre

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.

Sunday, September 6, 2009

And We Wait

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.

Sunday, August 23, 2009

Waiting For the Test Results..

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

Tuesday, August 18, 2009

Sooner Than I Expected

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.

Sunday, August 16, 2009

A Little Freedom with Irrigation

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.

Friday, August 7, 2009

Cardio-Pulmonary Function Test

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....

Tuesday, July 28, 2009

Better News!

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].

Monday, July 27, 2009

Good News

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!

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.

Thursday, July 23, 2009

Next Step in the Process

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.

Tuesday, July 21, 2009

Healthy Heart

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.

Friday, July 17, 2009

PET Scan Results: NEGATIVE

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

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


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...

Saturday, July 11, 2009

Thank You

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

Thursday, July 9, 2009

Patient Advocacy

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

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.

Monday, July 6, 2009

Waiting...Again

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.

Saturday, July 4, 2009

Tired

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!!!!!

Tuesday, June 30, 2009

Ode to Lovenox

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

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.

Friday, June 26, 2009

Update...Long Overdue

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.

Thursday, June 4, 2009

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




Wednesday, June 3, 2009

A Company With a Great Commitment


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.

Friday, May 22, 2009

The Latest

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

Monday, May 18, 2009

The Ramble-n-RollReview: A Wonderful Event

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.

Wednesday, May 6, 2009

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

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
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.

Tuesday, May 5, 2009

Pretty Darn Tired Lately

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.

Sunday, April 26, 2009

Update

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.

Tuesday, April 21, 2009

The Fun Still Isn't Over

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.

Friday, April 17, 2009

Thursday, April 16, 2009

No PET Scan Reults Yet...

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.

Wednesday, April 15, 2009

All Scans Are Complete

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.

Sunday, April 12, 2009

Short Walk

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.



Friday, April 10, 2009

Pretty Low Energy Lately

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.

Thursday, April 2, 2009

Feeling a Bit Strange (and Uncertain)

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.

Wednesday, April 1, 2009

Very Good News

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

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.

Tuesday, March 31, 2009

There And Back Again

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.

Saturday, March 28, 2009

Discharged

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.

Friday, March 27, 2009

Off to Play

Thank you for your comments, emails and even Facebook posts. It means a lot to me.

My doctor asked me to stay for a second night because he wants to see the embolism decrease in size before he discharges me. So, Daniela and Beau came to visit today. He told her he wanted to play on Papa's bed (which he did here last night). So, I changed out of my silly hospital pajamas, put on my blue jeans, shirt & sneakers and we were off to play in the hospital with Beau. The doctor told me that increased circulation with walking would help the embolism dissolve. We had a great time. Beau LOVES the elevators, as well as laying on my bed under the sheets and declaring he's sleeping. He's the best.

I also stopped into the Hematology Department to say "Hi" to the satff. I was admitted through their department on Friday, so I thought I'd pay them a visit and let the staff know I am doing well. It was during my discussion with some of the staff that I was informed of how common Pulmonary Embolisms (PE) are with chemotherapy patients. Apparently chemotherapy can cause PEs because the chemo irritates the lining of the veins and arteries to the point that they actually shed and thus create clots, not to mention all the other drugs I have been on and off of since treatment began - they all effect the blood. I was a bit relieved after hearing this because I thought the PE was a new problem independent of the cancer. And I guess it could be. But it's a relief to know it may simply be one of chemo's more dangerous side-effects and not a new life-long problem.

Daniela also did some research and found that one of the side-effects of PEs is anxiety. No WONDER I felt the way I did in the past week or so. I couldn't figure out what was going on because it was so out of the norm for me to feel so anxious. Now I know.

Hopefully the lounge will be empty so I can watch some Syracuse Basketball on a decent size TV.

Thursday, March 26, 2009

Back to the Hospital

I was very disappointed when I received my CT scan results this afternoon. I have a Pulmonary Embolism. Yeah. A blood clot in my right lung. Not the answer I was hoping for. Once I arrived at the hospital here in Sayre and they actually examined me (after watching me stroll onto the 5th floor), my doctors told me I could have been treated and sent home, yet they admitted me. Seems they already had the ball rolling so they kept me here. I can't say I'm not relieved to be on a heart monitor right now. I feel very safe, considering how shook up I was when I received the phone call this afternoon.

Blood thinners were administered, my heart is being monitored and I will receive tests tomorrow to determine the source. And hopefully it's not additional blood clots.

Port-a-Caths are often the cause of blood clots and with that in mind, I intend to have my Port-o-Cath removed before I am discharged tomorrow. It's possible the clot was not caused by the port and considering they are known causes, I see no reason for the unnecessary risk. I want it out.

The long term plan is to have me on blood thinners for quite a while. Oh, good times! In the mean time, I've got cable and I'm watching Duke vs. Villa Nova. March Madness is so much fun. Go Syracuse!!!

Wednesday, March 25, 2009

A New Stage of the Unknown

For the past few months, I have experienced shortness of breath as a result of the chemotherapy. It is definitely at its worst right now. I can't even take a brisk walk without getting short of breath. A few days ago, I began to feel pain on the right side of my throat (or neck). I saw the Nurse Practitioner at my Primary Care Physician's office and she ruled out cold, sore throat, etc. So today I saw my N.P. in the Oncology Dept. at Guthrie in Sayre, PA to determine the source of the breathing issues and the pain in my throat.

I received a chest x-ray to determine if I am having lung difficulties, a sonogram to determine if my port caused a clot in my arteries and an ECHO cardiogram to determine if I have a heart problem. All tests came up negative. So, in the next day or two, I will receive a CT scan of my chest and neck in hopes of finding the source. It's also possible the problem is a result of acid indigestion, which I experience from the chemotherapy and has been found to be related to what feels like shortness of breath during cardiovascular exercise. However, it would not explain the pain in my throat.

S-o-o-o-o-o-o-o-o-o-o-o-o-o-o, hopefully the CT scan will reveal something. And as a sidebar, I should clarify that it will not include the abdominal CT just yet because of the risk of the false positive. My abdominal CT and PET scans are still scheduled for the middle of April.

Speaking of which, as I walked into the clinic this morning, I realized how anxious I am about my upcoming scans. I would be shocked if they were anything but negative, yet I have no way to know and obviously won't won't know until they are completed and analyzed. And considering my most recent thoughts plus the post-treatment anxiety I am currently experiencing, I am on a bit of an emotional roller coaster - something I have not experienced since the earlier days of my diagnosis.

Post-treatment anxiety is very common among those of us under long-term treatments. It can be from a variety of things. For me what seems to be the source is the drastic change soon to come should my scans come up negative. It sounds odd, but I have been very clear about my role for the last 22-months. I have been doing what ever I need to restore my health and many aspects of my treatment have been extremely intense. Should my scans reveal I am cancer-free, I will need to allow another four weeks from that point to recover from the chemo and then...what...back to normal? That may be the next step but I have to confess, it feels SO far from my reality right now.

Obviously, taking the first steps is what there is to do. And at the same time, the post-treatment anxiety doesn't make it easy. I'll continue to stand back and observe my experience objectively so I can make choices that create the next steps in my life as opposed to making decisions in reaction to what has happened thus far, but the anxiety can get a little intense now and again. I know it comes and goes. It always goes. But I am now in a new stage of the unknown and therefore uncertain how long it will take. Yet I am confident the length of time is really irrelevant and that my sense of security will emerge it what ever way it emerges. Again, it is what I learned so early in this experience - to let go of how I think life should be and simply experience it as it is. Obviously I'll let you know how it goes.

Saturday, March 21, 2009

The Honeymoon is Over

One thing that has been consistent for almost the entire (soon to be) two years, is a thought that often brings tears to my eyes. And that is having to accept that what is happening to me - not necessarily cancer, but a health crisis with possibility of either death or serious life altering circumstances - is going to happen to either me or someone close to me.

Before this diagnosis, it was "other people" who dealt with such things. And it's now that I realize, in the context in which I am speaking, there are no "other people." I am - we are - those people. I have a deeper appreciation for life than I had before I was a diagnosed with cancer and equally a deeper appreciation for life than I had before I became a father. And I also know I am very blessed to have the strength I have had throughout this process. Blessed in the sense that it is not my strength, but a strength I have been graced with. I am not proud of it. I am grateful for it.

And where the pain arises is when I find myself in thought about who in my life will be next and if it will be someone close and dear to me. A powerful gift inside of my experience has been a familiarity with how to stay strong and positive in the face of circumstances that have at times been nothing short of terrifying. Tears ran down my cheeks this evening as I thought to myself, "I don't want anymore strength training. Not with my own health. Not with the health of those I love." And I don't have a choice. The honeymoon is over. The relationship is still sweet, but reality has set in. There is more to come one way or another. I can choose what's so and be with it or pretend life is something it is not. And what has gotten me this far is by choosing what's so. And naturally that is what I will do, but I'm not there yet. At least not today.

Tuesday, March 17, 2009

The Science of Treating Cancer (updated 3/17)

Last night was my 12th Neulasta shot. The 12th of 12 scheduled shots following the chemo. I feel like someone beat the daylights out of me, but that's a good sign. It means the Neulasta is doing it's job. Neulasta stimulates the body's production of white blood cells and the largest bones produce the most white blood cells . Therefore they hurt the most. It's kind of odd that my eyes, forehead and nose hurt as well...???...but it's standard on my list of experiences with this treatment. I'm definitely going to go hit the couch in a few minutes. And I'm SO glad this is the last of the scheduled treatments. We've got a long way to go when it comes to the science of treating cancer. Link

Friday, March 13, 2009

12 of 12

In just a little while, I will have the chemo pump removed from my port. I thought I would be pretty moved once the treatment was complete. The reality is that I am not. I am indeed experiencing some relief knowing that this is the last of 12 chemotherapy treatments. Hell, I'm in heaven right now! However, it seems what will truly move me will be when my upcoming PET & CT scans are negative for cancer.

My PET & CT scans are currently scheduled for April 1st. However, I did some research and found that chemotherapy treatment for colo-rectal cancer causes inflammation of the large intestine and the inflammation can cause the scans to show a false positive for cancer. So, I intend to speak with my new chemo doctor and request the scans be scheduled one month from today. Assuming my I am currently negative for cancer, a scare like that would be more than I can to deal with right now.

On a good note, I found out yesterday that my cancer "markers" are at zero. It's my understanding that a healthy person can have cancer markers anywhere from zero to five and have no worries about cancer growing out of control in their bodies. My cancer markers have been under five since the day I was diagnosed. Some people with cancer just don't have markers in their blood and for whatever reason, I am one of those people. However, the fact that they're at zero at the moment - even lower than they were just months ago - is certainly a good sign.

Last but certainly not least, Daniela and I just celebrated our six-year wedding anniversary yesterday, so it's kind of sweet to have the scheduled chemo wrap up today. A couple celebrations happening at once.

Wednesday, March 11, 2009

Wish I knew about this months ago!

I am home from today's chemotherapy treatment. My new doctor recommended a longer treatment today ( a double dose) and no treatment tomorrow. I came home with the chemo pump this afternoon and will return Friday to have it removed.

I hope it makes things easier. I still have to go to Sayre to meet with my surgeon, Dr. Cagir, so it won't reduce travel time, but it will be nice to not do chemo 2 days in a row. Wish I knew about this months ago!

Feeling pretty lousy. I'm glad there's lots of Big East Basketball on today.

Sunday, March 8, 2009

Great Week

I've had a great week since last Tuesday. Usually I feel pretty lousy right up to the second weekend following treatment, which gives me four or five good days before my next treatment. Fortunately, this time round I have felt relatively well since the Tuesday that followed my (Wed/Thurs/Fri) treatment.

So, on Tuesday March 3rd, I joined a friend (in the picture to the left) at the final home game of the season for the Syracuse University Men's Basketball team. Syracuse won and we had a absolute blast. I felt a little out of it in comparison to how I've felt that close to a treatment in weeks past, but not enough to hinder my excitement.

I went for a couple walks pushing Beau in his stroller this week and I imagine those really helped as well. Exercise is good during chemo - so I've been told - but I'm short of breath just from walking fast as a result of my treatment, so going for walks has been pretty low on my list of things to do.

I'll do my best to take a few more between now and my treatment this Wd/Thurs/Fri, as well as following the treatment. But either way, this upcoming treatment is scheduled to be my last. #12. This could be the last of it for good. I can barely get my head around it.

Friday, February 27, 2009

Some Real Honesty

It's not uncommon for people who have had cancer or something of the like to say, "My life will never be the same. I can see things so much more clearly now" or "I have a whole new appreciation for each day." Well, I recently heard someone say in response, that comments such as those "leave the rest of us to feel like we're shallow in comparison." I thought that was great to hear. Some real honesty that gave me an opportunity to reflect upon.

I don't want to be on a pedestal as a result my insights born of my diagnosis nor do I believe others who have not had a similar experience are more shallow than I am. What's so for me is that the insights I have received as a result of my experience have only provided me personal development or growth in the areas of life where I had the space for growth. In other words, where I needed it and in many areas still do.

For all I know, you may already have learned those lessons in life. Or maybe you haven't. But again, where I have grown as a person is where I've needed it, or to be more precise, where I am committed to growing. We're all in this together. And thank goodness. Your comments, emails, cards, calls and visits have provided me more strength than you know. I can't imagine having done it without you. Really.

Sunday, February 22, 2009

Lately...

I haven't written anything in while because each time I start an entry, it becomes too much for me to complete it. It's come to the point that I can rarely concentrate for long periods of time. And the last two posts I attempted were reflections upon my current state; they're unfinished and in my Drafts Folder because it's just too much to write the type of entry that takes any significant amount of thought.

I experience a significant lack of motivation along with low self-esteem and low energy. Again, I'm clear these are side-effects and not my emotional response to my experience. My current emotional response is more of frustration and feeling a bit beaten down. The closest thing to depression I experience is much less depression and far more a case of the blues, as a result of being frustrated and tired of all of this. Which brings me to my next thought which is, "Thank Heavens I am nearly done" and "Dear God, may I please still be cancer-free following my next scan so I don't have to do this all again because it is really hard?"

And on that note, I'm going to sit on the couch with Beau and watch his favorite morning program.

Saturday, February 14, 2009

Responding Quite Well (apparently)

I'm looking out the picture window over the creek and the sun is shining so brightly I can barely stand to look at it [I took the photo after the clouds passed in front of the sun]. But the sound of the rushing water - due to the significant thaw we just had - is quite a soothing sound, which I really appreciate considering how I am feeling right now.

And speaking of how I am feeling...as far as my side-effects go, on Wednesday, I felt nauseous from about halfway through my treatment until the wee hours of the morning on Thursday. On Thursday, I felt less nauseous and more toxic and lethargic. On Friday, I felt beyond lethargic - I was exhausted.

Oddly, on Thursday, one of my favorite nurses told me I was responding quite well to the treatment, which meant the side-effects I was experiencing were quite minimal. That left me feeling relieved, yet at the same time, my heart really went out to the other folks whose symptoms are worse than mine. Most of my fellow patients are significantly older than I am and it saddens me to imagine what many of them are going through.

Naturally, I asked my nurse what additional symptoms my fellow experience. And guess what? She wouldn't tell me! She reminded me that, in the past, I had manifested the chemo side-effects the day prior or the morning of my treatments and she had no interest in my doing that with any additional symptoms I wasn't even experiencing. And either did I! No argument from me! Thank goodness she had the foresight to keep it to herself. Not every nurse would have responded that way. She's a sharp one - thank goodness.


I am also so grateful for the rides I received to and from the clinic every other week. Sayre, PA is an hour drive each way, not to mention the hours spent sitting with me as I receive the pre-meds and then the infusion. I tried to drive myself a couple of times and that clearly did not work. The pre-meds and the chemo are just too strong. And I can"t imagine Daniela going with me and chasing Beau all over the hospital for five hours - not to mention the days our 11 year old needed to be picked up from school before Daniela and I would have arrived home or the days he stayed home sick from school. And I still can't figure out how people go to work while on chemo, unless they simply don't have such difficult side-effects. Between the nausea, lethargy and chemo-brain I experience, I can't imagine myself at work being anything less than a huge liability!!! And, assuming my post-chemo tests in April come back clear, all of this will be over soon.

Tuesday, February 10, 2009

Treatment #10

I will begin my 10th series of treatments on Wednesday February 11th. It's pretty satisfying to know that I will only have two series of treatments remaining once this weeks treatment is complete. I can feel the excitement building in me - knowing it's over soon - and I ain't lookin' forward to anymore chemo. So again, thank goodness that's it's almost over!

Wednesday, February 4, 2009

And the Winner is...

Wellsphere has just announced the winners of the People's Health Blogger Awards for 2008. They include Best Overall, Blogger's Choice & Best 100.

I haven't even checked out the different blogs because I wanted to let ya'll know about them. It looks like there is some great stuff on there.

Tuesday, February 3, 2009

Wellsphere





I accepted an invitation for my blog to be one of the featured blogs on Wellsphere - a website designed to provide more than just an encyclopedia of medical information, but insight into the personal experiences of those managing a cancer diagnosis.

Here's how they describe themselves:

...online health beyond the one-stop encyclopedias of clinical definitions and news [designed] to create a collection of separate web experiences on individuals’ terms, embracing the unique aspects of each health condition and each wellness issue.

And the reason for their existence:

[The] relatively early days of social interactions online [included] gatherings of people who had, or were, going through the same things we were. The advice, counsel and just basic support of people who had “been there,” but were otherwise strangers, had the most profound impact on us all. And the greatest impact was rarely about the science – though we did receive some very good ideas of things to ask our doctors. The real impact was about the “whole person” – we all were not scientific problems seeking chemical answers alone, but folks coping with how to live normal lives when nothing was normal.

I'm impressed.

Sunday, February 1, 2009

Less Than Pleasant

This Folfiri (chemo) is odd stuff. This time around, I'm not experiencing a whole lot of physical discomfort nor the feeling of being poisoned. Instead I am feeling depressed. Actually, I should state that differently - feelings of depression are present, and I am clear I am not depressed, but simply under the influence of this less than pleasant drug. I'm doing my best to stand back and observe them objectively - essentially thanking my feelings for sharing and choosing an alternative. It's definitely taking some focus to stay on top of it.

I do have some physical discomfort - in my sinuses. They seem to be dry, which is expected, and as a result they ache. I am going to use the humidifier today and see what kind of results I can get. Right now it feels like I got hit on the nose with a baseball.

Oh well. The Super Bowl is on this evening and I 'm definitely looking forward to it.