Kicking Cancer

Getting Better....

noreply@blogger.com (Robbie) — Wed, 19 Nov 2008 00:57:00 +0000

Sorry for the lack of updates.

The scans of course showed NO SIGNS OF LYMPHOMA. So I am officially in REMISSION. I expect this to be the FINAL REMISSION and I will never have to deal with this again.

My blood counts are near normal. My energy level is actually very good but I am still taking it easy. My taste is back (for the most part), but I still get a little nauseated from time to time.

Tomorrow I will probably have what is my last appointment at MD Anderson. I feel pretty sure they are going to give me the OK to be released. It feels great to know I will have my life back. At the same time (even with the hurricane) there are things and people that I've met in Houston that I will really miss. I'm also going to miss the weather because it's been in the 70s here.

But I came to kick cancer again and that is what I have done. Mission accomplished. I know I will face challenges in life ahead of me. But I can honestly say I live with very little fear because I've been through so much.

I still get people commenting on my "why NOT me?" post from months ago. I heard everyone say that attitude can have so much to do with a cancer diagnosis. Part of the reason I wanted to have this blog is to prove that. In hindsight, I look at how I handled everything and it's no wonder that the outcome is as good as it is.

The day I die, I have no idea what my legacy will be on this Earth. But one thing is for sure: it wasn't my time to go. And if it wasn't my time to go, that means I have a bright future ahead of myself. This is only the beginning.

I want to say "thank you" again to those who have showed you cared and reached out to me. You have made me feel that I wasn't going at this alone. You should realize that you too are a big reason why I became a two time survivor.

2 weeks out of hospital...

noreply@blogger.com (Robbie) — Thu, 06 Nov 2008 17:05:00 +0000

If you have followed any other cancer blogs, you see there is a point where there aren't as many posts. And this is a good thing. I haven't been writing a lot because there hasn't been much to say.

My blood counts (whites, reds, platelets) all remain low. But not low enough for transfusions or anything like that. It just appears my body is taking it's time in making new blood. I'm still in Houston and will most likely stay here until the counts are normal.

Tomorrow, I will update the blog as I get the results from all of scans and see my transplant doctor with an update on what happens next.

I'm doing much better than I was. I still get nauseated from time to time and sometimes when I smell food or see food on TV, it makes me nauseous. This is just something that takes time.

My energy level is getting better too. I can sit in a chair without having to rest my head!

I'm expecting great progress in the coming weeks. I'm not having as many ups and downs and I can feel all that chemo slowly working its way out of my body.

No brakes...

noreply@blogger.com (Robbie) — Fri, 31 Oct 2008 22:32:00 +0000

Well, it appears the truck has no brakes. It just continues running over me at full speed, leaving me always feeling beat up.

Today is 21 days after transplant. I thought I would be feeling good by now, but not yet. I go between feeling terrible and not so good, with the occasional moments of feeling OK. It still hasn't hit me what my body has been through and that I am finished with the treatment. I look pretty sick too. Dark circles under my eyes and finally lost my eyebrows and most of my eyelashes. It's just part of the process.

But, I just try to stay focused on the future... and how GREAT I will feel once my body has a chance to bounce back. I'm really not going to take anything in my life for granted for sure. (how many times have I said this on the blog?)

My white counts were actually in the normal range today. Reds and platelets just kind of laying low and hanging out that way. But I should have a bounce soon.

When I went to the doc this morning, my temp was 100.2. 100.5 would have sent me to the ER. They took it 2 times later and it was different both times. And when I take it at home--same thing... my temp seems to go up and down for no reason. But it hasn't stayed at the 100.5 range long enough and hoping it doesn't so I won't have to be readmitted. Each day truly is like a rollercoaster ride.

Monday is nothing but tests all day long.

Ups and Downs

noreply@blogger.com (Robbie) — Wed, 29 Oct 2008 19:51:00 +0000

I've been having to go to the doctors office every couple of days. I went this morning.

Everything was going uphill until yesterday afternoon. I started to feel bad again--kind of like that "run over by a truck feeling." This morning it was hard to wake up.

But I haven't been running a fever and show no signs of infection... so the APN (advanced practitioner nurse) overseeing me thinks it's just part of the process. The minute I have a fever, I would be re-admitted back to the hospital.

So it's kind of like a bumpy ride--take a step forward, take a step back. My red cells and platelets aren't dropping like they were, but still low. And my whites went way down, but they should come back up again. It's a long process. Today is 19 days after transplant, so it's still the beginning.

Next APN visit is Friday (Halloween), and then next Monday, I have all my scans again. I was already in remission before the the transplant, so this is just going to reconfirm everything I already know...

Chest Line REMOVED !

noreply@blogger.com (Robbie) — Mon, 27 Oct 2008 18:24:00 +0000

Just about 1 hour ago, I had my chest line removed. It was very simple... the nurse told me to take a deep breath and with a simple tug, it was out.

If you have ever been a cancer patient, you know the feeling that comes with having the line removed. It's really the first sign that you are becoming "normal" again--or a non-patient.

I've had to cover the line with Press and Seal, not get it wet, have it hanging out---in addition to flushing it every day and changing the dressing once a week. No more! The line is out and I am free.

My blood counts remain very low, but not enough for a transfusion. My major complaint now is that I have a terrible taste in my mouth that never goes away. It's not just a bad taste, I mean, it's terrible. Kind of like always having the feeling you've taken a sip of Windex. It should go away in a few weeks.

So I will probably be monitored in Houston closely for the next few weeks and then head to Florida for awhile. I still have very low energy and have to stay away from people for awhile until my counts normalize and my new immune system has a chance to build itself up. But all things considered, I am doing great and starting to realize I really did beat Burkitt's twice.

DISCHARGE DAY !!!!

noreply@blogger.com (Robbie) — Thu, 23 Oct 2008 18:45:00 +0000

Well, I made it. I was discharged earlier this morning. 13 days after the transplant and 20 days in the hospital. That's actually about the soonest anyone is usually released.

My white counts are normal. All my blood counts will kind of be in a state of flux as my body tries to normalize itself again. So this means more blood transfusions. And of course, I have to be really careful not to get sick as this is prime time cold and flu season. My immune system is only 13 days old at this point, so if I get sick, it could be a tough fight. A year from now, I will have to get all my childhood shots/immunizations over again as I am not immune anymore.

I thought at this point, I would feel very weak and fatigued. But it's not really like that. I feel more of a weird sensation--like I am in a fog or something and everything seems a little different. This beats feeling bad or like you have been run over by a truck, but I hope I feel normal soon.

30 days after the transplant, I'm finished going to the doctors office on a regular basis. That's only 17 days away.

That is one of of the most interesting things about being a cancer patient. You are diagnosed, you go through treatment, then when it's all over, you are kind of thrown back into the real world wondering what the heck just happened over the past few months. But one thing is for sure: you don't take ANYTHING for granted in life.

Transplant + 11

noreply@blogger.com (Robbie) — Tue, 21 Oct 2008 22:24:00 +0000

Overall, I'm doing Ok. Still feel a liitle rundown and pretty
nauseated (sp?). My WBC soared to 2.0 so the plan is to be discharged
on Thursday, 10/23.

Transplant + 10

noreply@blogger.com (Robbie) — Mon, 20 Oct 2008 23:31:00 +0000

Great news: My WBC came in today at 0.8. The doctors expect this will continue to rise and I should be discharged probably in the next 2-3 days.

Don't get me wrong, I'm very excited to hear this news. But everything I have been through the past few weeks are still a bit hard to process. For the most part, I feel OK (no mouth sores or anything), but most of the day I do still have that "hit by a truck" feeling where nothing is wrong, just feel rundown. I thought I would be fatigued, or run down, a little, but I guess I had no way to tell just how much this would take out of me.

But there are so many reasons to FEEL GOOD. I made it through the transplant. I made it through treatment for recurrent Burkitt's. I'm NOT dead, I'm NOT dying, and I don't plan on backing my bags for heaven anytime soon.

It's only human to wonder if you are going to make it through this--I always believed that someway I would (I'm a tough guy at heart for those who truly know me). But now the reality sets in that this is just one more obstacle I have encountered to make me the person I am...

I'm also looking at the calendar... seeing it's Oct. 20 and wondering to myself--what happened the past 17 days. Where did this month go?

I always thought with such a long hospital stay, I would be itching to get out of here. But honestly, the nurses have taken great care of me and it almost feels like I'm being rushed out in a few days. ha ha It's just, you think of people leaving the hospital fully recovered, but I still have a lot of recovery to do.

The thought just hit me... I have not been off the 11th Floor of this hospital, or seen trees, or people, or anything. Wow, I really have been reborn again and will never be the same person as before this experience.

My view of the construction cranes has been OK, but I am looking forward to jumping back in the "real world" as a new man.

Transplant + 9

noreply@blogger.com (Robbie) — Mon, 20 Oct 2008 00:13:00 +0000

Today, I didn't do too much but sleep.

The good news is the mouth sores have completely healed and my WBC is
up to 0.3 (over 4.0 is "normal") Still a ways to go..

I still have no appetite and vomit from time to time. But I think at
this point, the worst is behind me. I may be discharged from the
hospital later this week.

Getting more platelets..

noreply@blogger.com (Robbie) — Sun, 19 Oct 2008 02:16:00 +0000

The left side. That's what platelets in a bag look like..

Transplant + 8

noreply@blogger.com (Robbie) — Sat, 18 Oct 2008 22:01:00 +0000

Last night, I felt probably better than I had in sometime...

So it was no surprize when I learned this morning my white count was
up from 0.1 to 0.2. Once that goes up more, I'll really be feeling the
difference.

All day today was spent getting a megadose of Rituxian. It took about
8 hours to infuse. If you have been keeping up on the blog--you know
what Rituxuan is.. It goes after cancer cells only and isn't
considered chemo. The thought is if there were any remaining cancer
cells (even after all this) it would kill them.

So the Rituxian has left me a little weak.. But I'm so glad that no
more heavy duty drugs! Just antibiotics and that type of thing and as
needed...

I'm waiting for another blood transfusion--I'll be getting more red
cells. The platelets and reds only last a few days so you have to get
more. They should be arriving to the room anytime now. (Room service:
can you send me some blood? Ha)

Hopefully over the next few days, those stem cells will start making
blood cells of their own. It's hard to believe I have been in the
hospital for only 2 weeks--it feels like a few months.

Transplant + 7

noreply@blogger.com (Robbie) — Fri, 17 Oct 2008 18:51:00 +0000

I thought the worst was behind me.

Last night, for no particular reason, I felt like death. It was
horrible. Before now, having food poisoining a few years back was the
worst i have ever felt. This topped that. Finally, I was able to go to
sleep.

This morning, I woke up feeling like roadkill. Just as if I was lying
on a highway and car tires were rolling over me going 60 mph.

Keep in mind, I know this will pass. And I know this will make me
stronger in the end. But I also feel it's my duty to be honest and
upfront about what this process is like. Trust me, I am not being
dramatic here--I'm just giving you a glimpse of the hell stem cell
transplant patients face. (and I'm a young guy that is doing well
through the process!)

I'm basically feeling the effects of all the chemo I had when the
process started. I haven't had an immune system for days now, and let
me tell you I can't wait to get it back.

I am now 7 days past the transplant... So anytime over the next few
days, those transplanted cells will finally start producing white
blood cells. The doctor tells me I'm going to have a very quick
turnaround when that happens.

Until then, I just have to stay strong... And when those ill feelings
come, do anything possible to focus on not thinking about how horrible
I feel.

Transplant + 6

noreply@blogger.com (Robbie) — Thu, 16 Oct 2008 18:29:00 +0000

The past 24 hours have been quite interesting to say the least. It's kind of hard to know where to begin...

The mouth sores I had were very bad and painful. So yesterday, my nurse suggested that I take a morphine-like drug through my IV. The pain subsided a little--but I vomited several times and felt horrible.

Then, I spiked a little fever, which meant I had to be put on new IV antibiotics, and be sent for a chest X-ray, and more detailed blood tests.

I really felt horrible during this time.

During the night, the pain was so bad, I couldn't sleep. It became difficult to talk. They gave me more of the morphine drug--but honestly it didn't really seem to help any. You know you are facing a lot of pain when morphine doesn't help. That being said, I had felt worse 3 years ago when I got mouth sores then and my fever shot up.

This morning's blood tests revealed my platelets and red cells had also taken a nose dive. No wonder I felt to terrible.

I got out of the bed to use the restroom, and my heart started racing. The nurse ran my vitals again and suggested that I stay seated at all times, because if I stood up, my heart was going to start racing again. My mouth sores, this morning, were hurting worse than ever so I was given more pain medicine.

When the doctor made the rounds, he said my mouth sores were some of the worst he'd seen. Keep in mind, during the whole time, yes, I am in pain, but it seems like everyone else was more worried about it that I was.

So around 11a, I got my platelet infusion. And as I type now, I am getting my blood transfusion. A blood transfusion may seem like a scary thing, but when you are short of blood, it's about the best thing that can happen. I can now stand up and my heart doesn't start racing.

Amazingly enough, the mouth sores are feeling better. I won't have another blood test until tomorrow morning--but it looks like my body may be starting to produce some white blood cells. It could happen anytime over the next couple of days, and when I have more white cells, that means the transplant is working.

This whole process is so crazy--and such a rollercoaster ride. Yes, you feel bad, but the crazy part about it is just wondering what's going to happen next and how you are going to feel in a few hours.

But I really do think the worst is behind me. And as each day passes, it's going to get easier and easier.

Transplant + 5

noreply@blogger.com (Robbie) — Wed, 15 Oct 2008 19:46:00 +0000

I've probably felt worse today than I have in awhile. My counts
cotinue to bottom out, but not enough for a transfusion.

My main problem now are these terrible mouth sores. It feels like
strep throat--but until my body creates some white blood cells, It's
not gonna heal.

The nurse keeps pushing the morphine--that it would help, so I may
have to have some before the day is over.

Good news: I still haven't spiked a fever yet, which usually happens
to patients in my condition.

Real Life "Bubble Boy"

noreply@blogger.com (Robbie) — Tue, 14 Oct 2008 23:33:00 +0000

This is what "contact isolation" is all about. When I leave the room
or someone enters... This is what you have to wear (headphones and
iPod optional)

Transplant + 4

noreply@blogger.com (Robbie) — Tue, 14 Oct 2008 20:05:00 +0000

I'm still hanging in there. It's amazing how slow the days go by.
Thank goodness for Family Feud, Antiques Roadshow, Deal or no Deal,
Judge Judy, etc.. Never been much of a coach potato, but that's all to
do when you are waiting for you stem cells to start making blood cells.

I did find out I have no white blood cells that can be counted. (which
also probably means no lymphoma cells left)! My reds and platelets
have been hanging in there, but I will probably need a transfusion or
two in the coming days.

Finally, the nurses are warning me at anytime I could spike a fever
from any infection. What they then do is give antibiotics and let the
fever ride itself out which could be days. Can't give Tylenol because
it can mask possible infection.

So I am hoping for the best. Making it out "good" through a stem cell
transplant is kind of like making it out good through a hurricaine--
damage is very relative.. But everyone continues to tell me that I am
really doing great so far... And while this is no doubt hell, I know I
have one heck of a life ahead of me...

Transplant + 3

noreply@blogger.com (Robbie) — Mon, 13 Oct 2008 13:52:00 +0000

Today, I found out I have 0.2 white blood cells which means no immune
system. The good news is that I am probably at the beginning of the
worst part, and by the end of the week, counts will be on the upswing.
(maybe even sooner).

The nurses have told me don't worry about eating. Anytime I do try and
eat (even liquids) I vomit it up and makes me feel worse. They say
most patients don't even think about food when they are where I am
now. I must say, I am a little hungury, but it's going to take some
more time. I never really thought about how everything must be in the
right place and condition for a human being to consume food.

The past 2 days, my goals have been as simple as get out of bed and
walk around the nurses station. Or the simple act of taking a shower
which can take a lot out of you. I think I have lost about 10 pounds
in just over a week.

One day at a time. That cliché rings so true giving this situation.
All things being said, I'm actually doing very well as a transplant
patient and keeping my goals and knowing that I'm gonna enjoy life
like never before once this is all behind me.

This is a rites of passage like none other... But I wish it on no one.
The hospital and the nurses have been great and made for a much better
experience thus far...=

Transplant + 2

noreply@blogger.com (Robbie) — Sun, 12 Oct 2008 16:18:00 +0000

Ok... Not to be a baby, but can I say I finally don't feel well.

It's not that I feel terrible--it's just all the chemo and all the
drugs that have been pumped into me are taking effect.

My mouth sores are kept at bay so far, but I feel as though I have a
box of chalk in my mouth.

I also found out I have a stomach bacteria which means more meds for
that and gowns have to be worn in addition to gloves and masks. The
bacteria isn't anything to worry about, it's just part of the types of
things that happen when you have a weakened immune system and you have
to deal with.

So I feel rundown. The doctor making the rounds said I will most
likely feel this way or worse for another 10 days or so. That's the
time expected for my transplanted stem cells to start bringing back
life.

I consider myself optimistic and able to deal with this whole cancer
thing with the right attitude. I don't know how someone with a bad
attitude would be able to handle it...

All things considered, I am still doing well. There are just going to
be a few bumps along the way... :-)

Transplant +1

noreply@blogger.com (Robbie) — Sat, 11 Oct 2008 16:56:00 +0000

I'm doing great overall. I feel good and have good energy.

Mouth sores are trying to develop in my mouth so taking medicine for
that, but it's to be expected.

I was telling a nurse earlier--it's as if I am flying down the
expressway, going 80 miles an hour. It's rush hour and so far--I
haven't hit the traffic yet. I'm hoping I can just sail through, but
there is always the chance of a bottleneck.

So for now, I am enjoying feeling good--and hope that someway I will
luck out and miss the traffic :-)

Happy Birthday!

noreply@blogger.com (Robbie) — Fri, 10 Oct 2008 16:17:00 +0000

Transplant day. It took under an hour to have my cells put back in me.
(10/10 at 10am)!

It will take about a week to 10 days for these cells to start making
new blood cells.

In between, I bottom out so the critical period starts in a few days.
I don't feel great, but I don't feel horrible either. Just hanging in
there and keeping the right attitude. Doing what my excellent nurses
are telling me what to do. It's my goal to be one of the best case
transplant patients...

No more chemo!

noreply@blogger.com (Robbie) — Thu, 09 Oct 2008 15:35:00 +0000

Not to long ago, I finished the last chemo I will ever have to take.
It's called melphalan. The chemo protocol I was on was called "beam".
As the nurse came in with the bag, I said let's put the "m" in the
"beam."

So I made it through the chemo. The true test comes next week as my
counts bottom out, I lose my immune system, and my new stem cells
start making blood for me. Right now, I feel pretty beat up, but I
have felt worse...

1 day to transplant...

noreply@blogger.com (Robbie) — Thu, 09 Oct 2008 11:11:00 +0000

Still hanging in there.. Thurs is the last day of chemo and Friday
transplant day. Actually woke up today feeling ok, but yesterday was
rough.

3 days until transplant

noreply@blogger.com (Robbie) — Wed, 08 Oct 2008 01:40:00 +0000

The chemo is starting to get to me. But I am hanging in there. Now I
am beginning to understand why you have to be strong mentally and
physically to get through this :-)

4 days to transplant..

noreply@blogger.com (Robbie) — Mon, 06 Oct 2008 23:50:00 +0000

Overall doing OK. More of the same. There are times I don't feel well,
but they usually pass after awhile.

This is me with the etoposide. Livesafer or worst enemy? It's all how
you look at it... I bag takes about 3 hours to go through my veins.

5 days from transplant..

noreply@blogger.com (Robbie) — Sun, 05 Oct 2008 19:05:00 +0000

Chemo started this morning. 6am on the dot. I am due for another 4
hours tonight.

I did vomit for the first time during this treatment cycle. Luckily it
was mostly Gatorade. I am starting to get "water weight" but this is
normal.

I just finished walking around the floor the past 45 mins. I can't
leave the floor and have to wear mask and gloves when I leave the room.

I put on the earbuds for my Iphone and was jamming out to Internet
dance music. I have always loved the beat and energy behind dance
music (techno is a certain type of dance music--so it's like calling
"country" music "bluegrass" or something. Get it right, ok!? Ha)

Funny thing is--all these older stem cell transplant patients would
see me flying down the hallway (I walk fast) and would quickly get out
if my way. I had no idea doing laps in the hospital could be this much
fun...