In a Funk

 

I’ve been in a real funk for the past couple of weeks. Hope it lifts soon. There are plenty of things I need/want to do but I just can’t seem to get around to any of them – even answering emails. 

On the other hand, I have a week off of chemo because of Thanksgiving.  One more thing to be thankful for. 

My taste buds are beginning to come back a little. With any luck the Taxol treatments won’t make them all disappear again.

I’ll post again when I feel less like a slug.

 

 

 

Sadness ...... and guilt

 

Sadness because Neal’s sister-in-law is about to enter hospice care.  She’s spent the last year battling cancer. What a rotten turn of events. 

Guilt because while she’s been suffering through multiple surgeries and other horrible physical indignities, I’ve been sailing along through my chemo with nothing more than a few annoying side effects.  I’d accept a heavier load if it would ease hers just a little. 

I know that life is not fair.  But wouldn’t it be great if it was just a little more fair than it is.

 

 

 

 

I Don't Care

That's it.  I just don't care.  I'm hopeful that this is just the post-steroid crash, but for right now, I simply don't give a rat's patoot.  About anything.

On to chemo Phase 2

 

I’m in my fourth and last cycle of the Adriamycin/Cytoxin   cocktail. In December I begin a new one featuring Taxol. 

Side effects are still mild but annoying. Chemo Brain is more noticeable – general fuzziness and inability to concentrate for very long. Takes me a lot longer to finish a book these days. 

Fatigue is frustrating. I take a lot of naps. 

I’d estimate that I’ve lost about 70% of all hair.  I still have patches where stubble grows on my scalp so I shave it off weekly.  I cannot imagine what it would be like to have only patches of hair here and there if I didn’t shave. Have not worn either of my wigs yet. 

 White Blood Cell count is still an issue but I don’t go out much these days so I’m hoping that will be enough to minimize the opportunities for infection. 

My biggest complaint is still my non-functioning taste buds. Eating is more of a chore than anything.  I could whine about this for days.  My chemo treatments are on Thursdays so the Thanksgiving holiday gives me an extra week off before I start the next drug.  Maybe the extra time will give me a chance to taste Thanksgiving dinner. 

I’ve been concerned about possible Taxol side effects – mostly neuropathy and bone pain.  But my concerns have eased after reading an article stating that the protocol I’ll be on should minimize those.  I’m scheduled for 12 weeks of once a week infusions as opposed to the protocol calling for four or six weeks of Dense Dose infusion. I’m hoping that the lower dose over a longer time will be relatively easy.  My oncologist says it will be.   

Trying to decipher the insurance paperwork is an interesting challenge. I’ve learned that just because a hospital is part of the insurance network, doesn’t mean that its contract staff is also part of the network.  I’ve incurred more “out of network” costs than expected.  But that’s another post. 

All in all, things are going well.

 

 

 

The Cost of Cancer Part 2

 

Here are links to two articles that address the high cost of cancer treatment. But costs like this are not limited to cancer. Twenty-five years ago I had a friend who was dealing with kidney damage resulting from diabetes and who was being charged $4,000.00 per month for one of her meds.  The most common reason cited for these prices is that the manufacturers must be able to recover their costs of research and development.  But I don’t think that it is quite that simple. 

In this short article from Medline Plus, the author points out that nearly two-thirds of all personal bankruptcy filings are due to medical debt. That’s astounding!  We’re not talking about a bunch of spendthrift deadbeats here.  These are people who are doing their best to cope with a serious, perhaps deadly, disease.  It is a also a call for physicians to begin to tackle the sensitive topic of cost with their patients.  Between physician reluctance, and a patient’s possible embarrassment, that won’t happen overnight. 

This longer article from New York Magazine takes a deeper look into the cost issues and it really blew my mind.  It begins by discussing a newly approved cancer drug that can increase life expectancy by 42 days. 42 days! Six weeks! This new drug provides exactly the same results as another drug that’s been available for some time but is twice as expensive as the older equally effective drug.  Using the new drug, the cost of an additional 42 days of life could be as much as $75,000.00. 

Oncologists were initially aghast at the idea that they consider cost when prescribing treatment.   

This whole thing has raised so many questions in my mind that I’m not sure where to begin. 

I guess the most important one to me is quality of life.  Knowing what my Dad went through during the last 6 weeks of his life, I suspect that adding another 6 weeks would have been a hideous punishment. How do we make these decisions?  Are our physicians capable of dealing with these issues?  Everyone’s situation is different, but I’d like to think that I’d opt for quality over quantity.   

What about oncologists and other medical specialists? Are they too focused on the disease to consider the whole patient?  Is it a matter of ego?  “My treatment was successful.  The fact that the patient is now bankrupt and/or homeless does not detract from the results of treatment.”  Yeah, I know that’s probably an exaggeration, but I’m ticked off.  There seems to be a grandiose Ivory Tower mind-set that deems only the technical details of treatment worthy of discussion. Will that ever change? 

Ok, I’m off this soapbox for now.  Sorry if this was rambling and incoherent but I wanted to get it off my chest.

 

 

 

 

 

 

 

General Update

 

Things are still going well in my third chemo cycle.  White Blood Cell count 0 again at last blood work.  Moderate fatigue mostly, but I expect to crash again for a couple of days this week.  Low energy. 

I’ve been going “commando” as far as my head is concerned..  Neal comfortable going out with a baldy so I’m just letting it all hang out. 

The worst part is not being able to taste anything.  Meal time is pretty much just fuel intake.  I really miss being able to appreciate good food.  Neal is doing a beef stew today and it smells wonderful but I’ll never know how it tastes.  Bummer.