My Personal Cancer Journey — A Multitude of Emotions

What a flood of mixed emotions (all negative) today has elicited. I am frustrated, disappointed, and angry after my appointment this morning at the Cleveland Clinic Cancer Center in West Palm Beach. I am very frustrated because my chemotherapy, scheduled for this morning never took place. Instead, after waiting an hour for the doctor to arrive (he commutes here from Miami on Mondays), we were unable to adequately assess the results of my CT Scan from Feb 16th. The reason seems to be the incompetence of the Cleveland Clinic in Florida — they never uploaded my CT Scan discs, which I hand-carried to them from RI, to my profile here, so the doctor was unable to compare the latest CT Scan with the previous ones. I don’t know who was actually responsible for the omission but I blame everyone involved. The doctor should have asked for them, if he had bothered to find out that my CT Scan here was completed. The staff in Weston should have routinely uploaded this information as soon as it came in (January 28th). I am especially frustrated because I was waiting for these results to make a final decision about a trip with my grandson to Egypt later this year. Now I must wait even longer to begin to make arrangements.

I am disappointed because I expected much better from the Cleveland Clinic, supposedly one of the finest medical institutions in the country. How could they allow things to fall between the cracks like this? I am also very disappointed in my Florida cancer doctor. He is certainly not as thorough as my RI doctor.

Finally, I am angry because my life is predicated on my latest CT Scan, and so my entire life is once again in limbo, waiting for these glitches to be corrected and for an analysis to be done. Who knows how long it will take? It’s hard to be so completely dependent on other people doing their jobs.

So what were the results of the latest CT Scan? They were, quite frankly, not good at all. My largest tumor, the original one in the upper part of my right lung, has grown another 50%, although the interior of the tumor seems to be largely necrotic (dead) tissue. It also seems to be pressing again on the mediastinum, the partition between the right and left sections of the chest, although I must say that I have not been experiencing any additional pain.

The worst news was regarding the tiny tumor which was first noticed in January on my adrenal gland. At that time, it was a mere 12 mm in size. Now it is 3.9 cm!! That’s an incredible amount of growth in just over one month! It obviously requires some rethinking about treatment.

The doctor here has recommended that I begin a new chemotherapy regimen next week, with the drugs Avastin and Abraxane, both of which have numerous and serious side-effects. As I stated to the doctor here, I want my own Cancer Physician, from RI, to see these results and to approve or disapprove. I put a call into him today and am awaiting a lengthy discussion about these new developments before I make any kind of commitment to this treatment program. The doctor here also believes that he may be able to get me into a clinical trial that the Cleveland Clinic in Weston is running and which pertains to these new medications. We’ll have to see what my regular physician feels about the trial as well.

Thus, I am (not very) patiently waiting for some resolution and some direction.

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