LIVING WITH MCL

I realize it's only been 8 days since my chest was zip sawwed open, my heart stopped for a few hours while the doctors worked on it, and then rewired together so I can breathe without my sternum splitting back open, but that doesn't make what I am going through any easier. There are just no words that can adequately describe how difficult this whole ordeal is. One step I have taken is to stop taking my pain meds this morning. They only make me feel strange, and don't seem to do much to alleviate the pain, although the oxyconton does allow me to sleep a little better. My last pill was an Oxycodon at 1:30 AM. I'd only been taking 5 mg every 4 hours with 325 mg of Tylenol in between (couldn't tolerate any more). It's been almost 7 hours since my last pain med, and the pain is still tolerable. (I'll see how much that changes as the last of the residual medicine in my body wears off.) If it gets any worse I may just try a Tylenol and see how that goes. In the mea...

and am now safely home, free of the risk of hospital born infections (MRSA). Of course I'm not out of the woods yet, risks still abound, and I am on a plethora of meditations to help mitigate the effects. But at least I can get back to a somewhat normal routine. (Although Edie will have it a little harder taking care of me.) I'm also not much interested in sitting in front of a computer blogging, but I wanted to let everyone know I am doing fine. No one could have ever prepared me for what this operation entailed, and if they tried, I probably wouldn't have believed them. This operation was so much more difficult than I could have ever imagined. The best way to describe it would simply be to say, you do not want to have to go through this operation, and you definitely don't want to do it a second time. I will update my progress as I am able.

I was going to attempt a witty post of sorts describing the visits from the Cardiologist and Anastesiologist this afternoon, but I just didn't have it in me. Suffice to say, surgery is scheduled for early tomorrow morning, and will last about 6 hours. I should be in ICU around 2 PM, and hopefully awake around 5 PM. It's going to be a long day. Thank goodness I'll be asleep for most of it. I'll post again as soon as I am able.

The reality of all this is finally starting to set in. I'm in the hospital, I'm sick, and I'm about to undergo major surgery. It pretty much hit me about 1 AM this morning. I got a roommate, and for almost an hour I had to deal with him calling for the nurse, mostly wanting something to eat, and then having to listen to him suck a can of Ensure dry with his straw, while eating grahm crackers. I knew this would likely happen, I just wasn't prepared for it to happen at 1 AM, nor for it to be so disrupting. Then, no sooner do I get back to sleep, I'm awakened at 20 minutes to 3 to draw blood. She told me I was first on her list. Gimme a break! They couldn't wait till mid morning to start drawing blood? And as if all that wasn't enough, at 5:30 AM, someone comes in, and starts asking questions of my roommate. Is this the way it is in every hospital, or just the VA? Anyways, here it is, 6:30 AM, I'm wide awake, waiting for my breakfast, and just wishing this ...

At long last, a doctor visited me this morning, and informed me my surgery has been scheduled for Tuesday. (Neglected to ask what time.) it wasn't a Cardiologist, but rather an orthopedic doctor who stopped by. I thought that strange, but he did explain why. I just promptly forgot the reason he gave. I'm guessing he just happened to be the one available at the moment. So I guess that's good. I'm just not sure why, having just read and signed the consent form. It must be simply because it's a change from the past few days of total boredom. Now I've got something more definitive to worry about.

Today didn't seem as bad as yesterday. The food wasn't quite as good (I was told it never is on the weekends), but I've been blessed for a second day without a roommate (something I doubt will last much longer), and Edie kept me company most of the day, which helped the time go by a little faster. I was also able to take a shower and shave, which made me feel a little better. Still, I haven't been told anything about when they're going to operate, and I was just informed by the nurse that I'm not allowed to have the tea kettle, I use to boil water for tea, in my room. Oh well, I thought that was something that could happen, but no one said anything for a day and a half, so...... Anyways, for now I've hidden it in the bottom drawer of the nightstand, and I'll be more circumspect when I use it tomorrow. I just wish the Cardiologist, the surgeon or somebody would come by and give me some more information. I'm pretty sure this waiting and the anxiety it...

It hasn't even been one day, and already I'm going stir crazy. The morning started out OK. Edie was here, and I was getting all sorts of attention. But that ended pretty quick, and after Edie left, it was only downhill from there. Now I just feel like I'm sick. Even worse, I felt like an invalid as I was wheeled to my echo cardiogram late this afternoon. My only salvation is having Edie's smartphone and access to the Internet, but even that's is starting to lose its appeal. I'm just not sure how much more of this I can take. BIG SIGH

My first day at the VA has been very fruitful. I've had my blood pressure checked, blood tested, my chest X-rayed, and the West LA team of hematologists blessed my bypass surgery. Now all I have left is an EKG, and for the cardiac surgery clinic to schedule my surgery. (Most likely Tuesday or Thursday.) The only problems so far, besides total boredom, is they've got me on an 1800 calorie, low sodium diet (that's normally how much I eat for breakfast), and there's no internet access. I had to switch phones with Edie. It's going to be a long weekend. :(

If you ask two metallurgists the same question, you're very likely to get two different answers. I know that because I am [was] a metallurgist. I know that also, because metallurgy, like medicine is not an exact science. So you'd think I would have been better prepared for the response I got from the cardiac surgeon when I met with him today. First off he couldn't believe I'm still walking around, and even able to exercise. Normally he said, he would have admitted me immediately to perform bypass surgery, but there's the problem again with my lymphoma. It's not that he thinks I'm going to die from my lymphoma, and not worth the effort, but he is concerned about what effect my high lymphocyte count may have on the success of the surgery. So before he would proceed, he needs to consult with the hematologists in LA. He even went as far as suggesting I be admitted tonight, so the hematologist could evaluate me first thing in the morning, and also to keep an eye ...

I was just going through a f ellow blood/lymphatic cancer survivor's blog , and I was struck by a remark he made in his post of September 3rd, titled Endless War , I am living in what the late CLL expert Dr. Terry Hamblin would have regarded as my end times. People with my type of CLL (unmutated, 11q-deleted, at least up until recently) live about eight to twelve years after diagnosis, he once told me. He had hundreds, if not thousands, of case histories to back up that assertion. While David goes on to paint a much more optimist view of his prospects (which everyone should read, he's a great writer), I can't help but go in a different direction, choosing to focus only on the first sentence of that statement. As much as I hate to admit it, maybe even try to deny it, there's no changing the fact, I am living in my "end times" as well. It's a fact of nature, and no matter how hard we [I] may try, you can't change the inevitable. My time might not be as w...

I made the mistake of soliciting another opinion from a cycling buddy of mine, who also happens to be a [pediatric] cardiologist, concerning my angiogram. I say mistake, not because of any fallout that occurred, because none did, but because he provided some additional information I think I might have been better off not knowing. It just so happened he talked to one of the cardiologist Fellows at the VA, who was familiar with my case, and was able to gain greater insight into my condition than he was able to ascertain from the information I sent him. Simply put, what I got from his explanation this morning (which I readily admit may not be a correct take on his explanation), is there's an artery (maybe the circumflex, I don't really remember) that branches off into two other arteries, and there is blockage in all three. Apparently it's something very unusual, which further explains the [older] attending cardiologists question, during my angiogram, if I ever had radiation tr...

Finished reviewing copies of my angiogram and treadmill reports, and not only do I have a 90% stenosis of the distal left main coronary artery I also have a 95% ostial stenosis of the circumflex artery systolic function The latter being the reason the cardiologist couldn't stent, since according to a friend, The ostium is the opening of the artery to the aorta. You can't stent through that [because] half the stent would be lying free in the aorta. Whether they could have stented the left main artery is pretty much irrelevant since a bypass would be required regardless. It's just now it will be double bypass surgery. Yet it doesn't end there. During my treadmill it appears I experienced an ischemia abnormal ST depression seen immediate recovery 0.9 slow sIow-upstoping V3, 4.5mm horizontal in V4-V5, and 1.9mm V6->; ST depression seen during exaggerated HTN reading of 246/106 Not sure that makes a lot of sense to me, but in simpler terms, this was evidence the heart was...

For the past 10+ years I have been living with the belief Mantle Cell Lymphoma would be the likely cause of my demise. It became even more evident two years ago, when I decided to retire, due to some limitations as a result of my MCL. So never did it cross my mind, during that time, I would develop other health issues that could potentially be worse. But then 2012 happened. First it was a diagnosis of basal cell carcinoma in May , which put a crack in that belief, and now a diagnosis of coronary artery disease (CAD), with 90% blockage of the main left coronary artery, and the necessity for bypass surgery, has shattered it. On the surface that might not sound so bad. The condition was found early enough, and it can be corrected. Right? Well, not exactly. It becomes much more complicated when you have another underlying condition (Mantle Cell Lymphoma), and your health insurance/care is through the Veterans Administration (VA). I was told by the attending cardiologist, as he was describi...

There certainly is a lot of truth to that statement. I emailed the cardiology department at the VA this morning to ask about my angiogram, and a few hours later someone called. My angio is scheduled for 8 AM tomorrow morning. (I have to be there at 6:30 AM for the prep.) I was actually more surprised to learn the VA secure messaging system worked, and that somebody even read the email. I thought I was going to have to make a physical appearance in the department this afternoon. And neither was I anticipating such promptness in scheduling, so now I'm more anxious than ever. At least I won't have to worry about it over the weekend.  

Saw the cardiologist today, and he said it's not looking good. I definitely have coronary heart disease. My calcium scores are off the charts (> 3000), and I'm likely going to need a stent or two. Maybe even bypass surgery. BYPASS SURGERY!!! Not even in my wildest dreams was I anticipating that news. And the worst part is, he said I shouldn't be exercising until then. (And cycling has been the only thing that seems to alleviate some of this discomfort my enlarged spleen causes.) Oh well, as I always say, such is life! We'll know more after the angiogram. I guess I'd better start making out my will.

Now that I've mostly recovered from our "vacation" to Kauai, I think I can honestly say, other than the fact the room I reserved wasn't available the first night, I lost my phone charger when we changed rooms (fortunately I had a back up), Edie came down with the same "viral" infection on Wednesday, I had the previous two weeks, and my phone drowned when it went swimming with me in the ocean, it wasn't that bad. The hotel was nicer than expected, the weather was perfect, and the food was good (maybe a little too good, as I gained 8 pounds). The only question is why I felt the need to travel 3000 miles to experience all that, when I can get all that [and more], i.e. good food, nice beaches, great scenery and fantastic weather, right here in southern California, or at most only a few short hours away by car. Plus there is nothing more mortifying and profoundly exhausting, then traveling anywhere by airplane. Getting to and from the airport, going through s...

My upper respiratory infection is gone, and I'm finally feeling normal again. A recent check of my immunoglobulins were nearly identical to the results of last February . 68 today vs 68 in February for IgA, 1422 today vs 1458 in February for IgG, and 342 today vs 332 in February for IgM. I was still able to have my heart CT scan as scheduled Friday, despite being 45 minutes late for the appointment. (I thought it was for 10:30 AM, and when I arrived I was told it was for 9:30 AM) But mostly I was feeling good about things having come out unscathed, after being side swiped on my bike Thursday, by an old man in a van. Apparently he was in a tremendous hurry to get to the stop sign ahead, and decided I didn't have a right to the road. So he swung wide into the other lane, clipping my fore arm with his right side mirror, while nearly taking out another rider, as he swerved around him as well. Not sure how I was able to stay upright, but I did. (Must be my tremendous bike handling s...

I received some interesting criticism the other day for my stance on alternative therapies. I ......... cannot for the life of me understand why you would not use supplementation and then use an over the counter poisonous liquid which has proven liver toxicity. Especially while taking a statin. She was referring to the use of an over the counter cough medication, I have been taking to help ease the symptoms of my upper respiratory infection. I did this once and vow to never use it again! I have gotten off Lipitor by using Nicotinic Acid and getting much better results but still use COQ10 to protect Liver as you must do while taking Statins. If you are not using CoQ10, I urge you to research this issue. MCL reduces your D3 and should be taken everyday! I use 5000mgs a day. I was sorta taken aback. She was partially correct. I'm against taking supplements, but when necessary I don't have a problem taking over the counter medication, when my ailments finally get the better of me. ...

I know I've made that same claim numerous times in the past, but for some reason, this time feels different. For the third time this year I've been stricken with an upper respiratory infection, leaving me sidelined for the past several days. I am feeling [mostly] better now, but only because I relented, and started taking a cough suppressant. That's something I've tried to avoid ever since my diagnosis, but this time I figured, why not? I already conceded to taking a baby aspirin and a statin drug everyday, due to a heart issue I may or may not have, so taking a cold medication didn't seem much more a violation of that principle. I've always tried to abstain from taking any medication [and vitamins and supplements] since my diagnosis, believing when the time does come to start treatment, the medications that I do take will be that much more effective. Not sure that is true, but it seems logical to me. So while I'm not sure I do need treatment at this point, ...

Not even a weekend of eating and drinking wine in the Santa Rita Hills wine country, could alleviate all of the anguish I've experienced since the start of this month, but it did help. So to keep whatever momentum I've started going, I thought I'd switch focus to something else that has been bugging me for some time now. The concept of complementary treatment ! It appears the bad name alternative treatments have been receiving is finally taking its toll. Why else would advocates of alternative treatments be trying to steer clear of the term alternative . A term often met with skeptism by medical experts, in addition to carrying the much deserved stigma of being unproven, risky and dangerous at best. So now, in order to remove that stigma, the industry is taking a new approach. In order to create legitimacy, where only skepticism existed before, the industry is promoting the concept of complementary therapy, that is alternative treatment(s) combined with conventional treatm...