LIVING WITH MCL

Followed by the worst night of my life. Things did not go as planned yesterday. I didn't even get the chance to worry about getting Edie up the 4 steps into the house after having her blood coagulation levels checked yesterday. On the way to the car, Edie stumbled on the first step,  fell backwards, and hit her head on the ground.  She didn't hit hard, but................ I read in the Coumadin manual, you have to be concerned when you hit your head, due to possible bleeding. So after she managed to maneuver herself to the edge of the porch and stand, I got her into the car, and just took her straight to the ER for evaluation. Long story short, the CT scan was negative, and 6.5 hours later Edie was in a skilled nursing facility. She is just too weak for me to take care of. Words can’t explain how devastated I am. I barely got an hours sleep last night dreaming of nightmare scenarios, and she doesn’t have her phone, so I can’t call her, and visiting hours don’t start un...

Past experiences have taught me my first instincts are usually correct, but like everything else in life that isn't a guarantee, and after this first night and morning, I'm starting to have some doubts. Edie was well enough to be released from the hospital. Her oxygen saturation levels are stable, and while they do drop some with exertion, she recovers relatively quickly once at rest. The problem is she fatigues easily, and compound that with the severe neuropathy in her legs, it's a struggle just getting up from the seated position. Today should be the test.  She scheduled to have her blood clotting levels checked at the infustion. I'm pretty sure I can get her there without a problem, but getting her up the 4 step, and back into the house maybe a challenge. Stay tuned. I may be asking some of you for help! :)

It happened so quick yesterday, it was hard to comprehend. The doctor comes into visit, examines her, steps out for a minute, and on her return says Edie's ready to leave. I think it had more to do with the fact the copay requirement was only for 7 days, and after that there's no cost to the patient. Medicare must treat long stays differently. Anyways, the first plan was to send her to a Rehab center, AKA skilled nursing facility, nursing/convalescent home, but Edie didn't like that idea (nor did I). But since she was off the oxygen, and still in need of rehab, we managed to convince (we complained a lot) the powers to be that rehab through a home health care agency (a Medicare option) was acceptable. So now we wait. Edie needs to be evaluated by the physical therapist one more time today, and then she will be transferred home this afternoon. Finally, there's light at the end of the tunnel. It won't necessarily be easy, she's still weak, but I think I c...

That's what Kaiser calls the unit Edie had been staying in for the past week, but since she's been making such good progress, yesterday they've moved her to a Telemetry Unit. Last night they took her off the IV Heparin (it's Coumadin alone now), and she was even able to sit upright, in a chair, last night to eat dinner. I only wish I could say I was doing as well. Yeah, I know any discomfort I may be experiencing pales in comparison to what Edie has endured this past week, or even these past several months, but that doesn't minimize my situation. Trying to maintain a semblance of normal life, while driving back and forth to the hospital to visit Edie, picking up her best friend, who flew in from Ohio, at LAX on Friday (and taking her back this morning), all while continuing to worry about Edie, is starting to take it's toll. I just can't seem to relax. Sure I can sit back, lie in the recliner and watch TV, but my mind doesn't follow suit. Ridin...

Or is it day 6? I'm not quite sure anymore. It just seems like an eternity. Anyways, Edie is making progress. They think they've narrowed the infection down to either a bacterial or fungal infection, although they can't be entirely sure since she hasn't been able to provide a sputum sample. Plus they've been able to reduce the amount of oxygen, or something. I'm not exactly sure. She's using a different face mask now. (Just got word, 8 AM, they've switched her to a nasal cannula .) Still, the slightest bit or exertion, or if she takes her face mask off, e.g. to eat, her oxygen saturation still drops pretty quickly. Other than that, she is feeling better, and is in better spirits. 4 of her neices and nephew, from the Valley, came to visit her yesterday, so that boosted her spirits, and Saturday her other nephew, from San Francisco, will be visiting. Plus today her best friend from Ohio is flying in for the weekend to surprise her. Hopefully that ...

over the passed 12 hours. No longer are they going to put a filter in Edie's artery to catch the clot. Instead they put her on IV Heparin to try and dissolve the clot. They also believe the problem with her oxygen saturation is due to an infection in the lungs, so they've also put her on IV antibiotics to help relieve that. Still not sure when they're gonna let her out of the hospital, but at least she did seem a little better this evening when I went to visit. Only time will tell of course.

Called 911 last night. Edie was having lots of trouble breathing, couldn't eat, and was just not feeling good. She was thinking she was having a heart attack, but that turned out not to be the case. Within a short time, the paramedics arrived (always an exciting experience for the neighbors), and discovered her oxygen levels were around 50%. They immediately administered oxygen, in addition to a few other things (which I'm not exactly sure of), and then transported her to the hospital, after pushing all the furniture around, and totally disrupting the house. Anyways, without going into any more extraneous detail, which I could probably write a paragraph or two on, it was discovered she has a "string" clot in her leg, and they're going to install a filter between the artery/vein and the lung, to catch the clot before it gets to the lung, should it break off. The doctors still aren't sure why her oxygen levels are so low, and drop very rapidly when the oxyge...

Now that John McCain, Lindsey Graham, Marco Rubio and a host of other Republican leaders are beating the drum to return the US war machine to Iraq, I think it is worthwhile pointing out one little known fact. .......we [the United States] spend more in six months in Iraq ($54 billion) than we spent in 30 years on the National Cancer Institute, which funds most cancer research. Today, only two in 10 grant proposals from qualified researchers are funded by the NCI, which means that plenty of possible cures die for lack of funding. That quote was made over 6 years ago by Hamilton Jordan shortly before he died of cancer in 2008, in an interview with Johnathan Alter . I only bring this up because I find it reassuring to know there are still members of Congress who won't rest on their laurels, nor compromise their principles one iota. They still place a higher priority on taking lives, than they do on saving them. Just my opinion of course.

I just need to do more. My life is becoming ever more mundane. Everyday is the same, and the effort needed just to get up and get going in the morning, seemingly gets more and more difficult. EVERY morning when I get up, the first thing I do is drink a 20 oz cup of green tea. I've been doing this for as long as I can remember. It wakes me up. It gets me moving. It keeps me alive. It's gotten to the point I almost feel I have to do it. But why does it have to be 20 oz? That's a lot of tea for one sitting. It's the equivalent of 2.5 - 8 oz cups, and it takes a relatively long while (45 minutes to an hour) to drink. Consequently, I have to get up earlier than I might otherwise, in order to allow for sufficient time before starting my day. Just think how much extra sleep I could get if I didn't drink such a large amount of tea. It's true I attribute drinking of green tea to my longevity in dealing with MCL (and something I have no intention of giving up), bu...

While I could easily make that same claim for a number of other things, i.e. too much news channel, too much talk radio/TV, too much reality TV, even too much Golf Channel, I attribute the Food Channel to having a greater influence in changing my perception of food, than other programming has done in changing my perception of the world. There was a time when I equated the quality of a restaurant only by the quantity of food received (the more the better) and the price (the lower the better). Seldom, if ever, did I give taste or presentation a passing thought. But the Food Channel has changed that. No longer do I give quantity or price a high priority. Taste is the foremost requirement, with presentation being secondary. It's also the biggest reason I dislike going out to eat so much anymore. Although high quality restaurants abound, it seems most neighbor restaurants are of the low quality variety, i.e. lacking flavor and presentat...

Give 'em their iPhones, iPads, Facebooks, Snapchats, even their own blogs (like this one), and the proletariat (the masses) will become so enamored, obsessed and addicted, they won't realize how miserable their plight really is. At least that's how I see what's going on. If you think  the elite [bourgeois] are out of touch,  think again. Nothing could be further from the truth. They [the bourgeois] know exactly what they're doing. First they placed the notions in our heads that we need to get a job, buy a home [with a big mortgage], raise a family, and build roots in a community? So that once we do, we'll be stuck. No longer will we be free to pursue our true passions (whatever they may be), but instead, having bought into the so called "American Dream", we'll be inextricably coupled to our homes and families. In reality, we have less freedoms, not more! Even our health care system has been designed with that same purpose [control] in min...

If you had asked me that question a couple of years ago, without hesitation, I would have replied HEAT. But since this latest heat wave, following closely after another heat wave two weeks ago, and factoring in the drought conditions we have been experiencing in CA this year, I am seriously rethinking that choice. I don't know how people in other parts of the country, and even in some parts of California, deal with these sort of temperatures on a routine basis. It has truly been unbearable as of late. At least temperatures are finally starting to cool, with temperatures forecasted in the mid 80's today, and becoming more seasonable as the week continues. I'm not sure I could [can] take much more.

It must be true. I learned it on the internet. I don't like curly fries. I just wonder what else I don't know about myself, and what liking the following TED talk says about me. This is some pretty scary stuff.

Well, I had to wait 5 weeks, but I finally had the cataract in my right eye removed. The surgery didn't seem to go as smoothly as the the surgery on my left eye though. I had a little more discomfort after surgery, and my vision doesn't seem as good in the right eye, although I checked 20/25 in both eyes when I went to see the doctor for my follow up appointment the next day, and things are improving. Not sure what I was expecting, as it's still a 10 fold improvement over what I had been experiencing, so I'm not complaining to profusely. It's hard to believe I went as long as I did without surgery. It's like I had been seeing everything in standard definition (SD) all this time, and now I'm viewing everything in HD (high definition). There's still about 2 more weeks of recovery, having to wear an eye shield at bed time, and putting 3 different eye drops, 4X a day, in my eye, but I think I can handle it. After all I've waited this long. What's ano...

Do you believe everything you read on the internet? What if it comes in the form of an anonymous email? Do you give it more or less credence? Or maybe you give it the same credence. I don't give anonymous emails a passing thought, even when they come from friends or relatives. If there was any legitimacy to a particular position or theory, the person responsible should be proud to put their name to it? Unfortunately, not everyone believes as I do. Too many people are easily manipulated by confusing and misleading logic, delivered by slick individuals, whose only goal is to deceive, enrage and frighten others into doing their bidding. But then again, if you equate the use of money to free speech, and believe corporations are people, vitamins and supplements are food, and the stock market is anything other than the equivalent of a rigged roulette wheel or carnival game, then I guess you'll pretty much believe anything. I only hope the next time you get some anonymous email, or re...

I just realized my 12 year anniversary, of my diagnosis with MCL, has past with nary a notice. I usually commemorate that day (3/26/2002) with a post about how fortunate I've been to have survived so long, especially since I've managed to do so without any conventional (or unconventional) treatment, but as of late, I just haven't been that motivated to post anything. A few occurrences have come up that I could have written about, but that would mostly have been simply to fill space, and I didn't want to do that. Now that spring has arrived, and summer is just around the corner, maybe I'll be more inclined to post some innocuous thoughts, but for now, I'll just continue to lay back and bask in the realization that I've been through a great deal over the past several years, and I'm none the worse for wear. At least not too much! A friend once told me, I wold likely die of something other than my lymphoma, and it's only now that I'm beginning to rea...

And WOW is there a dramatic difference. It's not only that the Interocular Lens , implanted in my eye to replace the cataract, has improved my distance vision far beyond what I can remember, but the colors are so much more vibrant now. I never knew (or at least don't remember) how white,  the color white can be. The big problem now is waiting the 7 weeks for the cataract in my other eye to be removed.  

Nearly a month to be exact. And it's not be because I haven't had anything to say, because there has been been plenty. I just haven't been motivated. I've been going through a terrible funk lately. At first I thought it was the weather, but I'm beginning to discount that. We did have a few cold days in December and January, but February is proving to be pretty nice (for February that is). And if you listen to the news at all, you know there hasn't been much rain here in LA for quite awhile I can't blame it on the iron either, since I stopped taking that. There is still the Lipitor to blame, but I'm not about to stop taking it just yet. Plus I finally got my cataract surgery scheduled for March 10th, so I should be happy, but on the downside, my lymphocyte count has been steadily increasing over the past few months, almost back to its peak of around 4 years ago. So here I sit, looking for some sympathy I suppose, and hoping it's not my MCL starting to...

I find it truly amazing that it was my primary care physician that had the foresight to send me to the ophthalmologist for evaluation for cataracts, rather than the optometrist I saw for evaluation of my rapidly changing eyesight and prevalence for infections. It's like I've always said, it's not the health care system that determines your quality of care, but rather the doctors. The only problem being there are good doctors and bad doctors, and it's not always so easy to determine which are which. Anyways, as a result of the visit to the ophthalmologist I've been approved for cataract surgery. It's just not going to happen as soon as I would hope. (I'm looking at early March.) Apparently there are few other people seeking cataract surgery as well. (And here I thought I was the only one with such a problem.) I find it hard to believe that many people are in need of cataract surgery, but I was also told there is a possibility I could get in sooner, as patient...

Despite the iron increasing my hemoglobin, it didn't make me feel better. I didn't have more energy. I actually think I had less energy, and felt better when my hemoglobin was at 11 g/dL. (Of course the [cold] weather may have something to do with my lethargy as well.) Not only that, but it's increased my awareness of my spleen, and I think it's the cause of the increased occurrence of eye infections [inflammations, irritations, or whatever] I've been experiencing. I do have an appointment with an Ophthalmologist tomorrow, to see what he has to say about my eye irritations. I'm hoping I can talk him into cataract surgery, at least on my left eye which has been the most problematic, and I can eliminate the need for contact lenses, which may also be contributing to my problems. After that, who knows? I may start taking iron again. Stranger things have happened, but until I start feeling better, that's not gonna happen. This year is just not starting out as I h...