Monday, August 27, 2012

Blood draw and last meeting with current Oncologist today

Buck on 20120609 1315, originally uploaded by Buck Cash.
This morning, sister Candace and I went to get a blood draw and meet with Dr. Vermuri (probably got the spelling wrong on that one) one last time. He's retiring again after helping out for a couple months between my last oncologist moving to California and another one coming in permanently (we think) to take his place.

Anyway, they tapped into my port at the infusion center, got the blood draw, then we decided to leave the port in, just in case. Last week when we did this, I needed to get a blood transfusion after the doctor saw me, so they had to tap into it again. So this time we just left it in place, just in case it might be needed again before the end of the day.

After that, I went to see the Oncologist, and he looked me over, said things look fine, and that we'd schedule the next round of chemo for next week. It's to be an out-patient type chemo, code-named R.I.C.E.+R. We'll find out more about that the day before I get it when we meet with Practitioner Nurse Rene again.

Meanwhile, my blood counts looked good and my temperature didn't spike, so I'm still out of the hospital, and apart from just taking my meds at home, I'm basically on vacation for a week here, with no appointments (unless I get a fever spike or something).
After I got the "all clear" from the doc, I went back to the Infusion Center and had them remove the needle from my port.  :)

In a nutshelll: All's well here!

Sunday, August 26, 2012

Buck in hospital 20120822

Buck in hospital 20120822, originally uploaded by Buck Cash.

The nurse just hooked me up for another blood transfusion, so I had her take a pic with my cell phone while she was here. The transfusion's going in through the IV in my left arm and the antibiotics are going in through the port in my upper right chest. You can see the blood in the tube still headed into the machine that regulates flow and pumps it into me.

Hair's nearly all gone at this point. I wish I could just shave the rest off, but I'm not allowed near sharp objects with my blood in its current state (blood thinners make it hard to stop bleeding, even from small cuts).

The green thing in the bed is a fancy heating pad to try to alleviate some of the pain I've been having down there on my left side.

Still able to work and play here though. When I go to the hospital, I move in and get comfy for the long haul. As I'm moving in and setting up my stuff, I have them bring me two tables, which I put together with gaffer's tape. Also, I need a fan, extra blanket, tissues, real washcloths and towels for the bathroom, tissues, hospital pajama bottoms in addition to the gown, and I think that's about it.

I also set up 3 invention prototypes that my sister and I came up with that I won't discuss on the internet until we have the patent process completed. Everyone at the hospital thinks they're the cat's ass though, and agrees it's a totally marketable idea that we could sell by the hundreds or thousands on an ongoing basis to every hospital out there (they're disposable to deal easily with germs, bacteria, etc.), which is pretty exciting feedback. They're intentionally not in the photo.

Got my Galaxy Tab for reading my books and magazines and a few games I like to play on it, totally positionable on a Manfrotto Magic Arm, which is clamped to the table with a Manfrotto Super Clamp, and to the Galaxy Tab itself with a Tether Tools Wallee and Wallee Connect, and I love that arrangement.

Also got my laptop here, mostly for some database work I'm wrapping up, surfing the net, etc. Never really could get used to those chicklet keyboards though - like the tactile feel of a regular keyboard much better. I don't do touchpads either - gotta have my mouse.

The Doc says things are improving on my counts, and he thinks maybe, if that stays on course, I might be able to get out of here in a day or two.

Because my cancer is a blood and bone marrow cancer, the treatment causes me to be neutropenic for periods of time, and when that's happening I MUST be in the hospital (you can read why in the wiki link).

Whenever I'm neutropenic, I basically have to stay in a germ and bacteria-free "bubble" created by certain protocols that pretty much confine me to my room, where I'll stay relatively safe. Anyone entering my room has to wash with disinfectant, don special disposable yellow gowns and gloves, and then discard them before they leave the room when they're done. If I want to leave the room, I have to do the same, plus a mask over mouth and nose, and promise to stay at least 3 feet from other people and commonly touched objects that could be loaded with bacteria.

I don't mind the time here in my room since I have all my stuff with me, and even a nice view, but after 3 days of being in my room's bubble, I just needed to take a walk, so I get a nurse to get me all the stuff I need to venture out of the space ship, and in a few minutes, I'm in my Haz-Mat suit:, which is very similar to this:

I grabbed my IV Tree and step out into the hallway, then did 13 laps for a half a mile. My sister was visiting, so she came along with me on my walk and we had a great time laughing and joking about just everything. Along the way, I said, "hey, when we get back, you have to get a picture of me in this so I can post it!" She thought that was a great idea too.

A few laps later though, and I forgot all about it, and when we got back to my room, it wasn't until I'd already discarded all the stuff that I remembered. Oops! Next time. LOL

Anyway, that and the rest of the visit with my sister was the highlight of my day. We were cracking up here over just everything, including the 3 Stooges movie her and her husband just saw last night. I'd already seen it, so we were laughing about parts of it until we were literally in tears.

Then we thought it'd be funny if we made party invitations and gave them to every patient whose door I pass by on my walks, inviting them to a party at the nurse's station at a given time - without telling the nurses, of course.

At first, we thought a toga party, since we all have our sheets. But now, I'm thinking it should be a Zombie Party! We could all come out of our rooms at a given time with our arms out in front of us, a vacant look in our eyes and our slack, drooling mouths repeating over and over, "BRAAAAIIINNNSSS" as we all simultaneously converge on the nurse's station! Hehehe. Yeah, I think that'd be pretty funny.

Still having that pain in my lower left side, but the pain killers are working fine to deal with it when it flares up, and all the docs and nurses agree it's a muscle, rather than an organ since there are no organs in that area now that my spleens back to normal size and back up under my rib cage again, where it belongs. I must have twisted wrong or pulled it somehow somewhere along the line.

Got another blood transfusion last night, then a platelet transfusion today. Doc says things are looking good, and I might get out of here tomorrow.

After a few blood and platelet transfusions, plus some antibiotics to fight off some intestinal bacteria I picked up that caused the temperature spike that put me in the hospital, I finally got out yesterday.

Got some new meds to take to keep up the antibiotic fight against the intestinal bug, and also a topical ointment antibiotic for my chest port, just in case (the infectious disease doctor seemed to thing it looked kinda red, and doesn't want to take any chances with it.

I've got an appointment for a blood draw tomorrow.

So that's about it for now!

Buck Skeleton Shirt 2013

Buck Skeleton Shirt 2013, originally uploaded by Buck Cash.

Still having an awesome day here!

Made the trip to town to see the doc and got my appointment for the Port installation, he totally filled me in on the procedure and showed me the device, stopped at the bank to take care of some business, stopped at the DMV to straighten out a typo on my license, stopped at the Medicaid office to fix the typo there, had awesome Chinese food for dinner while in town, chocolate ice cream for desert, a pit stop at Walmart where some young idiot thought I was a greeter and asked me where I keep the hand baskets, to which I got to reply, "Do I LOOK like I f***ing work here?!!" as I gestured to the front of my black T-shirt with a bright blue glow in the dark chest X-Ray skeleton complete with ingested beer can and remote control printed on it. He just walked away, stammering. Sounded like "asshole", which made my day!

Seriously though... How freaking stupid does one need to be to spot someone wearing this T-shirt and joggers and no Walmart ID badge and think they're working there?

With deductive reasoning power like that working for him, I'm amazed he's made it this many days in his life without achieving a Darwin Award.

August 2nd, next Thursday, is surgery day to remove the PICC Line and install the Port. That'll make things a lot more convenient for me, not having a catheter hanging out of my arm. It's a PITA to wrap it all up in plastic every time I want to shower, plus I need my sister to flush it every day with saline and heparin.

I'll be knocked out during the surgery, not that I'd be able to see anything anyway, as they'll be working up around my neck and shoulders area to install it into a major vein and position it somewhere up there. Should be interesting anyway.

Had a pretty busy week.

Tuesday I had labs and a dressing change on my PICC line, then an exam and consult with my new oncologist.

Wednesday I had a CT scan.

Thursday I had surgery to remove the PICC line and install a Port in my chest. It was sore for a couple days, enough to dip into the pain pills, but it's not too bad now.

Friday we drove 4 hours to Detroit to meet with the folks that will do my bone marrow/stem cell transplant. Had plenty of paperwork from them to do, then a blood draw, a full exam from the doctor who'll head up my treatment on that front, then a 20 minute conversation with him about all the ways it could kill me in the process, my odds of going into remission with it, the 100% dedication and focus it will take for at least a couple months while going through it, etc.

He said it's like a mission to space. Once the rocket launches, there's no turning back or going off the plan. From that moment on, I either follow the plan to the letter, or I'm dead. He also told me up front that if things don't go well, he won't be keeping me alive on machines; He'll let me go peacefully, and everyone involved needs to be aware of it.

We live too far away, up in the sticks, to deal with the daily routines involved with the regimen of a bone marrow transplant, so they're going to set us up with an apartment or something nearby in the Detroit area for the duration of time it'll take to do it. No idea yet when that treatment will begin; It depends on how long it takes for the chemo I'm getting to clean up my system enough to be able to take the transplant process and survive.

My sisters were both tested to see if either is a suitable donor (siblings are the best possible matches), but we won't get the results of that for two weeks. The donor banks are also being looked at already, just in case neither sister is a match.

Next Wednesday I'll be admitted into the hospital for my next intensive round of Hyper-CVAC chemo. Scheduled for about 4 days in the hospital, last time it had me in there for 22 days because when it tears down my immune system, it's easy to pick up an infection from pretty much anything, which is what happened, then they gotta fight like crazy to combat it with several antibiotics, blood transfusions, round the clock vitals, blood draws and lab work, etc. Here's hoping it goes a lot smoother this time.

That's about it for now.

I got blood draws for labs again yesterday, but this time via the port in my chest, met with the oncologist for an exam and update, then checked into the hospital for my next round of chemo.

So, I'm back in the same room I spent 22 days in last time, hooked up to my bags of chemo chemicals going in through the port in my chest and an IV in my arm. There are 4 bags of stuff up there right now dripping into me.

Feeling fine here though. All set up with my laptop, tablet, smartphone, headphones, movies, music, books, magazines, games, work to do - plenty to keep my occupied. Did 10 laps around the hallways after breakfast, wheeling the IV tree I'm leashed to along with me. Just finished dinner here, so I think I'll go do 10 more. Gotta stay active and get some exercise around this place, or it gets old fast.

So far, so good.

Yesterday during my 10 lap walk, I noticed that the hallway walls are marked with footages, and calculated that 13 laps around the whole path is a half a mile.

So yesterday after dinner I did 15 laps, just over a half a mile.

This morning at 6:30 AM right after I woke up for vitals, I got a cup of coffee and did 15 more. Then after breakfast and chemo bag change-out about 9:AM I did 27 more laps, a little over a mile, all while pushing my IV tree full of chemo bags and hoses stuck in my port and IV tap dripping away, of course. I plan to do the same after dinner tonight.

The oncologist made his daily visit this morning and said my labs indicated that my sugar's a little high, so I should cut back on the ice cream and other sweets. Hemoglobin is a bit low, but as long as I still have good energy like I do, we'll fore-go a blood transfusion for the moment to bring it back up. If I start to feel run-down, I'll let him know and he'll get me hooked up with one.

Things are going well.

Shot with my Galaxy Tablet using the panorama mode on the camera. Not perfect (the bay doesn't have hills or bumps in the water between the land masses), but pretty cool feature nonetheless.

Walked a total of 3.5 miles yesterday, which was pretty cool. The high sugar has been tracked to the high doses of steroids that are part of the chemo they're giving me, and my diet has little to do with it, so they're now combating it with insulin added to my cocktail mix. I'll shoot myself with that same as I do the Lovenox injections. I don't know the schedule for them yet - I did two yesterday, as directed.

After a great day yesterday, I had a bit of a rough evening. About 8:30 PM the nurse came in to do vitals, give me my evening meds, change out chemo bags on the IV tree, etc. By 9 I was feeling quite nauseas out of the blue, and by 9:15 I was vomiting supper - violently. Finished with that, I was doing it again about 15 minutes later, but not much was left to come up. I found some anyway, and out it came. Rinse and repeat twice more, until nothing was left to come out but bile, and I spent a good hour being violently sick.

Nurse shot something into the IV tube, and I stopped puking and passed out for a few hours, till about 3:AM when I woke up and had to urinate. I have to urinate into a plastic jug, so they can keep measurements on how much I pee, so I go into the bathroom and take care of business, and at the end, I'm dripping blood from my penis, so I call the nurse to assess the situation.

The nurse looks at it and says we'll just have to keep an eye on it and see what happens, so I go back to bed, sleep another couple hours, and get up at 6:AM when they do vitals and some more meds.

I urinate again and this time a little blood comes out at the beginning like it was leftover from last time, followed by the usual plain yellow pee. The nurse asks and looks, and I report what I saw, so unless it returns or someone decides to follow up, no idea what that was about. There was no pain or discomfort involved with it either time.

Then I got up, got a cup of coffee from the kitchen, and I'm feeling much better now.

Good morning everyone! It's gonna be another GREAT DAY!! I can feel it!!

8-11-2012 - again
Had a full breakfast of two bowls of corn flakes, vitamin D 2% whole milk, sugar on top, wheat toast, yogurt, banana, orange juice. After that I took a half mile walk around the hallways. After 4 more hours at this point, still no nausea, and feeling fine.

Got the lowdown on the insulin injections: If my sugar goes above 150, I have to do an injection. Tested this morning after full breakfast and morning walk, it was 142, so all good. ETA: Tech came in and tested again as I was writing this, and it's back up to 227, so a nurse will be coming in soon to hand me an insulin syringe so I can do it up. No biggie - still all good here.

4 bags O'chemo a-drippin' and all's well! Another 24 hours or so of that, and we go into the chemo-cleanup phase of the drips with a different set of chemicals for another 24 hours or so and, as long as no complications arise, I'm out of here again, and back home in a couple of days.

ETA: Oh yeah, we're doing a blood transfusion today as well. Pre-Meds for that are here, and the blood's ready right after that. The insulin's here as well.

Had a bit of a downer day yesterday with fevers, chills, sweats, headaches, nausea. Didn't even bother to try to eat or get on the internet - just mostly slept all day and let the nurses, docs and techs do their thing by rolling over or sitting up for a few moments at a time occasionally to give them access to wherever they needed every couple hours or so.

Glad that's over, and again, MUCH better today! Did a Rituxan drip and will do another tomorrow, then cleanup meds, and back on track to get out of here, get a steak, and get back to the comfort of home again. Really looking forward to that!

Reporting live from the chemo ward on the 3rd floor of the hospital, this is your faithful reporter, Buckster, signing off till the next update!

Out of the hospital again and back home as of yesterday afternoon. Had to go back in to the Chemo Infusion Center today for a blood draw and an injection that's part of the chemo out-patient thing. Next appointment is Monday for more of the same. Platelets are low, so they're keeping a pretty close eye on that.

Home injections of Lovenox blood thinners for the clot in my arm are now reduced from 2 per day to 1, and then will be discontinued in about a week, according to the doc. Other meds are as they were, with one more added to the list for 5 days as part of the cleanup from the Hyper-CVAC chemo I just went through up on the third floor.

So, back to mostly relaxing and recuperating at home, with interspersed visits to the cancer center, for a couple weeks before we start the next phase.

Yesterday I went to the infusion center for a blood draw to do my labs. As part of the process, they do vitals, including temperature. It was 98.8. It normally fluctuates between about 97.4 and 99.4, so no big deal.

After the blood draw, I go to meet with the oncologist for a general assessment, and he says the labs I just had done at the infusion center indicate that my blood counts are WAY low; So low that I need a blood transfusion. So, he sets up the paperwork and sends me back to the infusion center for a blood transfusion. Checking in at the oncologist though, they do vitals again, and my temp was up to 99.2.

When I get back to the infusion center for the blood transfusion, they do vitals again, and now my temp's up to 100.2, so they call my oncologist. He tells them to go ahead and do the blood transfusion that's ready, then to take me upstairs to the 3rd floor and admit me into the hospital for a stay.

So, here I am back up on the 3rd floor of the hospital, in the room next to the one I've been n twice so far (same basic view though, which is nice) since yesterday. Did a blood transfusion in the infusion center and one or two more up in my room yesterday (hard to keep track because they give me Benedryl with it, and that stuff knocks me out pretty good usually).

Had some fairly intense pain in my lower left abdomen that woke me up last night about 3:AM, so called the nurse on it. She gave me a pain killer that did a great job, and I crashed back out about 20 minutes later. I wake up about every hour or two for no particular reason, look at the clock, and crash back out again.

Today's going fine. Had a nice breakfast of a couple bowls of oatmeal with brown sugar, yogurt, an orange, a banana and coffee. I'm back on the low microbial diet, so no fruits or vegetables unless they've been peeled first, no soft egg yolks and no pepper unless it's fresh ground myself in a grinder, which is fine with me.

At the moment, I"m getting another blood transfusion and several antibiotics.

I guess I'll be here until the blood counts come back up to where they want them and they're satisfied that whatever is making my temp spike is gone from my system.

I'm thinking tuna fish sandwich with cheese on toast, some chips, fruit cocktail and ice cream for lunch.

Back with more multi-updates in the next post.

Breakfast of Champions!

Breakfast1937, originally uploaded by Buck Cash.
Picture above is what I take every morning. Supper is two more of the blue ones, plus another shot.

I can eat anything I want while my white count is up like now. When it's down I have to stay on a low microbial diet, which isn't bad - some fruits I can't have and they won't let me have pepper, even fresh ground peppercorns, which shouldn't be a microbial problem, from what I've read, but whatever... They're making sure, I guess.

What the meds in the photo do is basically this: The shot is a blood thinner to slowly deal with dissolving the clot so that a chunk doesn't break off and go to my heart or brain and kill me. The big white one is to resupply my system with potassium electrolytes, which I lost from the chemo. I suck down a lot of Gatorade to help with that as well. The yellow one mostly helps with the nausea associated with the chemo. The tiny round white one makes me pee like crazy, removing excess fluids that allow me to breath easier/better. I walk a lot each day to help with that as well - gotta stay active, or I'll go to hell pretty fast here. The little oblong white one helps keep my breathing clear in spite of stuff like dust, pollen or other small air contaminants that would otherwise lead to problems I can't stand to have right now. The blue ones are a combination pain pill and help with the healing of sores, blisters and rashes, which I have from some of the several anti-biotics that were used on me over the past three weeks.

Long day of chemo ahead of me today, possibly extending over into tomorrow, depending on how it goes. It will involve Rituxan, which has always tried to kill me during the first infusion of it, so they'll want to take that really slow so that I don't have another near-death experience with it. It will also involve a fairly standard CHOP infusion, which I've always handled pretty well, with minimal nausea. Hair should complete the fallout with this infusion. It's been thinning daily for the last couple of weeks.

At least it will be an out-patient thing this time. Next one has me being admitted again, I think in a couple weeks from now.

Got my CHOP chemo yesterday along with half the Rituxan, dripped in R E A L slow, so I had no near-death experiences, which was great. Took all day in the chair, but slept through most of it because of a heavy dose of Benadryl.

Got the rest of the Rituxan treatment today, and now my next chemo is in about 2 weeks, but it'll be another full admission into the hospital. Between now and then it's just the home meds and shots, home care specialist visits from time to time (I think it's twice per week), and bulking up with protein to help see me through the more hardcore stuff I'll get with the hospital stay chemo treatment, which makes this outpatient CHOP+R stuff look like child's play.

It's all good so far though. Numbers that should be up are up, those that should be down are down, no more fevers, night sweats seem to be less intense as we move forward, strength, stamina and energy levels are returning again, gaining some weight (went from my normal 195 down to 162 at one point - currently back up to 178 so far, and moving up).

All good.


Had labs done and got the dressing on my PICC line changed out today, followed by a meeting with the Oncologist/Nurse Practitioner.

All the lab work numbers are heading in the right direction, spleen is almost back to normal size, lymph nodes are as well, liver still enlarged but decreasing in size slowly. The O/NP also canceled any more visits from the home care nurse at our request, since I really don't need those visits anyway, and their scheduling was making things inconvenient for me.

Took me off a couple of the meds I was on, and let me know that things are starting to get to the point where we can seriously consider where the Oncology department really wants to go with my treatment: A bone marrow transplant.

Turns out they've wanted to all along, but there was no sense in talking about it unless they were able to get me over the hump to a place where it might do me some good. The folks that do the bone marrow transplant won't even consider it unless the patient has had enough success at cleaning out the system that a transplant could be beneficial. If we couldn't get my system cleaned out enough for that, chances were that I wouldn't make it either way, and a transplant would just be a waste of time and money. Now they're feeling much more confident, and we're openly talking about that as a coming future step.

Before that happens, there will be another evaluation or two, followed by more rounds of chemo, both the CHOP+R out-patient stuff, depending on the evaluations in between them, and the more intense in-patient infusions over a few to several days in a hospital bed. But then, if all still keeps going in the right direction, I'll get scheduled for the transplant and head down to Detroit where they do that stuff.

Next appointment is a week from now.

Great day so far!

Woke up about 6:AM (normal for me). Had a bowl of mini-wheats. Got some work done on a database I'm writing. Caught up on some email. Surfed the web a little. Took my meds and shot at 8:AM. Had a couple eggs and toast at 9:30 or so. Read a few interesting articles. Getting ready now to leave for a doctor's appointment with a doctor who will replace my PICC line with a PORT, which will be more convenient for me, and still allow my infusions and blood draws and stuff without getting a few needles each time.

He'll look me over, get some med history, and then schedule the surgery for it to be installed. The sooner, the better, from my POV.

Will continue with multi-updates in next post.

Sunset Backyard 0201

Sunset Backyard 0201, originally uploaded by Buck Cash.

It's been a while since I updated, and I'm sorry about that. So what I'll do here is post the updates in one post, with dates for when I wrote them down, to get up to date here.

Been in hospital since Tuesday gettting intense chemo treatments. Will be here a few more days it looks like before I can get home for a week or two, then do it again. Had kind of a rough night last night - pertty tired today.

No real complaints though. Up on the third floor in a room with a fantastic view over the bay for sunsets, the food is good, the people are friendly and helpful.

Hanging in there.

7 days in a hospital bed so far gettting chemo, and I'm literally crapping blood here - quite a lot of it. They say that's to be expected because of the sores it's opening up from my lips to my butthole as it breaks down my immune system.

2 more Rituxan treatments over the next two days and then maybe I can go home for a few days before starting this up again - won't know till they can assess the situation.

Originally, this was supposed to be a 3 to 4 day hospital stay for an intense chemo treatment. It's now going into day 13, and no idea when it will end. Things have gotten more complicated than anticipated.

I've got "a bug in my blood" according to the infectious disease doctor. It's name is Graham something-or-other. My temperature swings throughout the day and night from normal 98.6 up to about 102.7, at which point I pretty much crash and burn (and sweat a puddle).

In all the days since the 4th day I was here, when we expected I'd probably be going home, I've been getting I don't know how many blood transfusions, platelet transfusions, and infusions of at least 4 different antibiotics to keep it from taking me out, now that the chemo has wiped out my immune system completely to zero.

It's an ongoing battle. For two days, I was just totally wiped out while it kicked my ass. Now it's back to sometimes I'm winning, sometimes it's winning, throughout the day as the battle rages inside me. When it's winning, I'm wiped out totally, can't focus long enough to read through a sentence - brain function collapse, and when I'm winning, I feel like my regular, lucid self, like right this minute.

Anyway, that's it for now. I'm starting to sweat, and I feel like I gotta take a dump. Shoot.

Still in hospital, 3 weeks tomorrow. DVT (clot) in left arm now, and lots of pain with it. PICC line is now pulled because of it so back to IV and needle blood draws.

7-11-2012 - Casey's birthday
Got out of the hospital today after 22 days of chemo, blood draws, complications, fevers, chills, sweats, pain, a blood clot, drastic weight loss, drastic weight gain, countless blood and platelet infusions, same with antibiotic infusions, blood draws, blood cultures, urine samples, stool samples, measuring how much I pee 24/7, 12-15 different pills per day, self-injecting a couple of different meds in syringes daily, and like that.

I'm home now, and ready for a break!

Will continue the multi-updates in the next post.