Saturday, June 16, 2012

MUGA Scan Test

Ground Squirrel 1525, originally uploaded by Buck Cash.
Yesterday, June 15th, 2012, Candy and I went in to Petoskey to get my MUGA (Multi Gated Acquisition Scan) Test, which takes pictures of my heart for about 20 minutes (10 minutes each, from two different angles). It's to make sure my ticker's up to the task of putting through enough blood flow while I'm doing the chemo stuff.

As tests go, it's pretty simple, yet interesting. First, they installed an IV and drew some blood. Then I go relax for about a half hour while they mix the blood with a radioactive marker, then inject it back into me. Then I just have to lay still for about 20 minutes while the machine hovers over me taking images of the radioactive blood flow. Nothing to it - hardest part is staying awake.

Like the ground squirrel in the photo above that I shot yesterday afternoon when we returned home, I'm still eating all the time, bulking up for next Tuesday's chemo, per the doc's orders.

That's about it for now!

Thursday, June 14, 2012

Next Step: Mantle Cell NHL

Snowberry Clearwing Moth 1442, originally uploaded by Buck Cash.
Yesterday I had a blood draw and a visit at my Oncologist's office with my practitioner nurse, Rene, who is VERY informed about my case and VERY helpful in explaining and discussing the latest information with me.

So, there's been a change to my cancer over time, which was expected. It used to be classified a Nodal Marginal Zone, monocytoid B-cell, stage 4. That made it a slow-growing form of Non-Hodgkins Lymphoma. We managed to put that into remission twice over the years with the help of chemo (COP and then CHOP) in 2001-2002 and then 2003-2004. We also used monoclonal antigen Rituxan to kick it in the teeth.

That all worked pretty well, and I've been in remission now for about 8 long, terrific years without any significant problems that I've been aware of.

Recently, of course, my symptoms have returned and I've been having some medical stress that landed me in the hospital, and we've confirmed that its time to deal with it again, also expected.

Now that the biopsies on the extracted lymph node from my neck and the bone marrow from my pelvis have been analyzed, the team of Oncologists working my case were able to determine that it's no longer that slow growing Marginal Zone NHL, but a more aggressive form of the disease calld Mantle Cell Lymphoma, which is still a Non-Hodgkins Lymphoma, just to be clear.

Because my cancer has changed to a more aggressive form, the treatment needs to be changed with it. The type of out-patient chemos I'd gotten in the past (about 2 hours of infusion every 3 weeks or so) will not be enough to deal with it this time, so here's the new plan, in a nutshell:

I'll be getting infusions that take 3 days, plus a possible 4th day for some cleanup, which will require a hospital stay each time for those durations. So, it'll be an in-patient situation.

The drugs that will be predominantly used in these infusions are:

Methotrexate on day 1 in a continuous transfusion.

Cytarabine every 12 hours for 4 doses on days 2 and 3 by infusion.

Leucovorin Calcium by IV as a wrap-up on day 3 or 4, depending. This drug is referred to as a "Rescue Med" to help my system after the previous infusions wipe out a LOT of cells throughout my system.

That treatment regimen will begin next Tuesday, on June 19th, 2012. At 10:AM I'll get a peripherally inserted central catheter (PICC Line) installed so that continuous infusions, IV drips, etc. can go into my body, and blood draws can come out, all without sticking me with any more needles every couple of hours (which already has my arms and hands looking like a junky again)

At 1:PM the same day, after my PICC Line installation, I'll meet with Oncologist Dr. Erickson to go over everything again, and then be admitted into the hospital to begin my 3-4 day infusion procedure.

Before any of that can happen, I've got to get a MUGA test, which will determine whether my heart can provide the necessary blood flow to deal with the additional stress the infusion procedures and drugs' actions will put on my body. That test is scheduled for tomorrow, Friday the 15th, at 1:PM.

I've been told to bulk up by eating anything and everything that I want and drink lots of fluids to stay hydrated. The infusion process is expected to drain me pretty much, so I need to store up some energy like a camel ahead of time to get through it easier.

That's no problem for me since I got the first chemo (COP) treatment and started eating like a horse! :)

Prednisone is not a part of this treatment plan, so I've begun (as of last night) to ween off them by halving the dosage, which I'll do for 3 days, then halve it again for 3 more days, then I'm done with Prednisone.

I was taking antibiotics to fight off a bit of bronchitis associated with my Chronic obstructive pulmonary disease (COPD/emphysema), but those meds ran out a couple days ago with no refills indicated on the bottle, and I don't seem to have any more symptoms of the bronchitis, so I guess they did their job.

Lump in my neck and leg are still downsized to nearly normal, and my abdomen still feels like it's going down as well, indicating that the first chemo de-bulking worked pretty well to put things in enough check for my spleen and liver to at least begin to return to normal size, though Nurse Rene upon examination yesterday said they're still enlarged.

I've got a PET Scan coming up, but I don't think it's been scheduled yet. That will allow the Oncology team to get a much more detailed look at exactly where in my body the cancer cells are pooling, concentrating, how spread out they are, and all that.

On the financial side (I have no medical insurance at all, and presently no income since I finished up my last job in April after 2 and a half years on the road and came home to Michigan), we went to the Social Security Administration Office yesterday and started up the process to get me on disability. Given my disease, how long I've had it, the advanced and aggressive stage it's in now, financial circumstances, etc., they said it's pretty much a slam dunk and we'll be seeing rapid progress on it's approval.

Meanwhile, 5 medical bills have come in so far.  I paid one off the other day, as it was only about $65 (they offered my a 50% discount on the full bill of $130 because I have no insurance, so I went for it).  The others add up to a couple thousand, so I'll start making minimal payments on those, just to keep them off my back.  Soon there will be literally dozens of bills coming in from everywhere on this, adding up to as much as a couple hundred thousand to perhaps several hundred thousand dollars, and even at some pittance like $5 per bill per month just to keep them off my back and keep my treatments coming, there will be so many individuals looking for payment that it'll amount to a couple or few hundred bucks per month, easy (been there, done that in my previous bouts with this over the years).  Eventually, SS and Medicare will take over and the whole thing can be put behind me, but that will take a while (up to two years to be fully covered and out of my immediate world).

In the meantime, I have my sister Candace to help handle them all, and I just give her the money and signatures she requires to deal with it.  She handles so much for me, it's just incredible - SHE's incredible the way she handles all this crazy stuff!  I'm just not able to deal with all the forms and phone calls and emails and red tape and frustration from docs, hospitals, bill collectors, social workers, the government, and various other associated entities, and that stuff is all right up her line.

Meanwhile, I was supposed to set up a primary care physician the other day and went to the one recommended for an initial visit, but he has an office staff full of rude people who couldn't even tell us what the cost of that day's visit would be, so we decided not to even try to work with them at all, and will find someone else.

I think that pretty much covers things at the moment. Will update again with any new developments.

Oh yeah, the photo above is one I shot the other day, and the moth's tongue reminds me of the PICC Line I'm about to get for the infusions. LOL!

Saturday, June 09, 2012

Sure had an appetite today!

Buck on 20120609 1315, originally uploaded by Buck Cash.

I haven't had much of an appetite for the last few weeks. Yesterday, I was a bit queasy and didn't really feel like eating much at all. The day before that, not much either. Some days, all I can manage is a single yogurt and a piece of fruit, or something like that.

Today though, my appetite came storming back, as soon as I woke up this morning!

So far today (it ain't over yet!) I've had 2 yogurts, a large orange, a burrito with cheese, a full plate of supper that included Salisbury steak, noodles and corn, an ice cream sandwich, and half a sausage with egg McMuffin that was left over because I couldn't finish it yesterday.

It seems like the lump in my neck has gone down a little, and I can hear a little better on that side again!

I did the trick with splitting the Prednisone pills in half and stuffing them down into the empty gel caps again, and it's so awesome to be able to get those things down without tasting them! Man! I should have thought of that 11 years ago!

Friday, June 08, 2012

Remission's over - Cancer's back

Sunrise_IV, originally uploaded by Buck Cash.
So, I've got a few updates for those interested...

June 4th, 2012:

After 8 years of remission, symptoms that my Non-Hodgkins Lymphoma is back have become apparent.

I checked into a hospital on June 2nd, and they began treating me and scheduling me for some minor surgeries to get a lymph node and some bone marrow for biopsy and final confirmation that it's back, but there's really no doubt.

This time, I've got an enlarged spleen that's huge and causing me a LOT of discomfort throughout my abdomen. Also dealing with a Deep Vein Thrombosis (blood clot) that's got my right leg below the knee swollen up and tender enough to make it difficult to stand or walk.

Like before, I've got night sweats and lower back pain associated with it, plus I'm just plain out of gas all the time - no energy and out of breath.


June 6th, 2012:

Discharged Tuesday afternoon after a whole lot of blood draws, a couple of antibiotic IV's, some bone marrow collected from my pelvis for biopsy, a lymph node removed from my neck for another biopsy, some injections of Lovenox blood thinner to deal with the blood clot, a bunch of pills, a magnesium boost via IV, a couple of CT scans, a couple of X-rays, an ultrasound of my swollen leg, several breathing treatments, and the news that in addition to my enlarged spleen (HUGE), my liver is also enlarged.

My veins were really hard to get into this time, and so there was a lot of pain as they tried to get the
needles in where they needed to go. They said that the first two rounds of chemo treatments I went through in 2001 and 2004 hardened them, so they're tough and squiggly like ropes now when you try to get a needle into them. Invariably, that means they miss and start digging around in my arm where we all get to learn about nerve endings.

The hole in my pelvis isn't too bad now, though it was no fun getting it (in my hospital bed, lying on my distended stomach full of enlarged organs) with just a local anesthetic to get through the skin, but the one in my neck where they took out the lymph node is pretty tender - they had me totally anesthetized OUT while they did that surgery though, so I don't remember it.

The ultrasound didn't reveal a clot anywhere, so we're all (doctors and nurses included) scratching our heads over that one, wondering what caused the swelling, which had all the symptoms of a DVT. The swelling has gone down considerably so that's good news. If it flares back up again, we'll look into it again.

There's no sense keeping up the Lovenox injections if there's no clot to dissolve, which is fine with me because the damn things are like $25 per injection, once or twice per day. So that's all good news - one less thing to deal with.

There's a giant enlarged lymph node or tumor or some damn thing on my neck, just below my ear. I'm pretty sure it's just a lymph node, rather than a tumor, or the docs and nurses would have had a freak-out over it. Size-wise, it looks like a mouse crawled into my neck and is just sitting there, under the skin. I'm guessing that the plan is to let it naturally drop back down to pea-size, along with my enlarged spleen and kidney, as the chemo does it's job.

I hope that doesn't take long. I was born deaf in my right ear, and this is messing up my hearing in my left ear now by impinging on my auditory organs on that side, so I'm nearly deaf altogether at this point, which pretty much sucks. Here's the picture: Old guy telling everyone to, "SPEAK UP!! I CAN'T HEAR YA!!"

I got myself a local Oncologist while in the hospital, and we'll start my chemo tomorrow morning at 8:AM according to his plan, which is fine by me. (later this morning actually, I notice as I look at the time - can't sleep worth a poot these days) The sooner we get this show on the road, the better. I like that he's pushing forward based on my history and my present symptoms alone, not waiting for the biopsy results, which will likely take a couple of days.

It actually started before I was discharged when they fed me a couple of Prednisones, which are part of my chemo treatments. They're basically a steroid to build up my strength enough to survive the more serious, caustic chemicals in the chemo when they go to work destroying the bad guys throughout my blood stream, lymphatic system and blood marrow.

We're talking about using Rituximab therapy as well, or possibly a newer variation that's come along in the 8 years I've been on vacation from this thing, that he mentioned, but I'm not yet familiar with. I'll get details on that when we chat in the morning.

Being my 3rd chemo, it might not work at all. Cancer evolves the same way everything in nature evolves. During my last two chemo treatments years ago, some random mutated cancer cells resistant to the chemo would naturally survive, just not enough of them to be a problem. If they are the dominant cancer form this time, we'll need to try something else. Maybe radiation or bone marrow transplant or something else I'm not familiar with yet.

Either way, I was supposed to be dead 10.5 years ago, and almost was. Every day since then has been a bonus for me in a big way, and I don't take it lightly. I've tried to make the most of those days, months and years, especially with my family and my personal journey, and I'm pretty satisfied at what I've done in that time. If I get more time, great - FANTASTIC!! If not, I kicked it's ass for more than 10 years and had a GREAT time - I already flipping WIN!

Anybody interested in my story up to this point can read it on my original cancer journal / blog here: You'll see from it that I've no interest in sympathy, depression, feeling sorry for myself or having others feel sorry for me. I am a survivor (it says so right on my Relay For Life T-shirts and stuff), and I will never quit living or give up trying until they cart my dead body off for a final trip to some med students for dissection, or whatever my full-body donation to medical science renders.

I woke up to a beautiful golden sunrise lighting up my IV, which is the photo at the top of this posting.

It's gonna be a GREAT DAY!!


June 6th, 2012:

Today I had a consult with my new Oncologist at his office about the recurrence of my incurable cancer, the prognosis and his plan for a medical path we'll follow in an attempt to put it back into remission for awhile, hopefully (several) years again.

Part of that plan is to use a fairly new (FDA approved in 2008, while my last chemo was in 2004) therapy/drug called Bendamustine in place of the Rituximab I got before. I'm still reading and learning more about it myself, but it appears to have several advantages over the Rituximab, though this drug all by itself is an estimated $16,000.00 per treatment, and I'll probably have about 6 of them.

I also read that favorable responses greatly increase if the two are used as a tag team, so that's an option to discuss at my next consult.After the consult, I got blood draws at the Burns Clinic in another part of the hospital complex, and then a chemo treatment around the corner from there at the cancer treatment center today via IV that included a cocktail of Cytoxan as the main ingredient, with a couple other drugs thrown in for good measure. Took about 2 hours to drip it in, and I was on my way back home.

Tuckered me out so I took my daily meds, had a nap and woke up in a puddle of sweat. No nausea yet though, so that was good, but got the bucket next to the bed and nearby at all times, because when it comes on, it's pretty sudden. I have some anti-nausea meds in case I need them, and they include one in the cocktail drip too.

One of the meds I take by mouth is Prednisone and man does it taste foul! Worse, it manages to leave that foul taste in your mouth for hours after it's passed through, even if you eat or drink other stuff! It's a common complaint on cancer patient forums, and I'm surprised the manufacturer(s) don't just coat the pills or put the stuff in capsules or something. It was the same with the first two times I did this, back in 2001-2002 and then again in 2004, but I just swallowed the nasty things and lived with it. Today I got the bright idea to crush them up and put the powder into empty medicine gel capsules, so I went on Amazon and ordered all the stuff I need to do that, then ordered expedited delivery on the stuff to get here Friday. That should take that horribly nasty tasting aspect of my treatment out of the picture, and good riddance!

Need to shave my head and face before my hair starts falling out from the chemo, so it doesn't get all

over the furniture and in the bed and everywhere else and clog the drains and stuff.


June 8th, 2012:

Yesterday my brother in law helped by changing out my regular bed to a hospital bed which provides more comfort when in it for longer periods during my chemo periods so that I can sit up and work on stuff in it, elevate my legs for better blood flow to decrease risk of DVTs from spending more time in it, and ease the ability to get in and out of bed with it's adjustable height set for my leg length.

Stopped off at a local barber shop and got my head shaved too. Not bald as a stone, but almost. Feels good and will keep me from leaving hair all over the furniture and in the drain and stuff.

I see my pill-making kit stuff to deal with the nasty tasting Prednisone is out for delivery, so I should have that by the end of the day to solve that problem.

I've got a doctor's appointment for this afternoon with my primary care physician to assess my overall condition beyond the cancer itself.

Went to meet my primary care physician today, but that went bust pretty quickly when his staff said they couldn't tell me what it would cost to see him until the session was over, and then I'd get the bill. All they could tell me is that it starts at $92.

I'm like, "so it's a surprise amount at the end? That'll be $500!" They didn't have an answer, so I told them that sort of thing doesn't work for me, to have a nice day, and left. I'm not playing that game with anybody. Tell me the cost of your services up front, and I'll tell you if I can afford it and am willing to pay it. I'll find someone else that I can work with.

So, I never did get to ask him if the gel caps will be okay, but again, I just can't see what kind of problem could possibly come from it. So I cut my Prednisone pills in two today, stuffed the halves down into a couple of the empty gel caps that arrived this afternoon, and swallowed them with not a bit of bad taste at all. Perfect!

I was feeling somewhat nauseated and over-tired the whole day, especially after the trip to town, but not enough to feel like I needed to take the anti-nausea meds.

Took a nap instead and woke up a few hours later with stomach feeling a bit more settled. Had a yogurt for supper (not much appetite these days).