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].

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.

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.

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.

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...

Thank You

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

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.

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.

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!!!!!