Chemo Round II Day 6

I guess I should be excited that I only have three more days of chemo left but it is the week after that I want to get through.  Then I will be really happy.  Here is where I am at currently.  I am weighing in at 151 lbs. which is about 15 lbs under my normal weight.  My latest lab shows that my potassium is back up and my white bloods cells are still up.  Yippee!  What is not normal, but to be expected, is high blood glucose, low albumin (a blood protein) and low red blood cells.  My blood pressure still high, temperature good, no real nausea, still losing hair, more bone and joint aches but no real swelling or edema in the legs or feet.   I have a decrease in taste and appetite and the start of mouth tenderness.  My fatigue and weakness is getting worse which may explain why I am sleeping better.

Sitting in the treatment center today, I vowed I would never again forget my headphones.  I am more of an introverted private person and don’t really like strangers hearing what is going on with me when I am talking with the nurses or getting hooked up to IV’s.  Likewise, I am not real keen on hearing the details of their lives.  I know many of you would converse with all the interesting people and listen to their stories and feel right at home.  For me, it is like pulling teeth.  There are six sections of 4 treatment chairs with other chairs on each side for significant others. So I am trying to read and I can hear everything everyone is saying all around me.  Wow, the stuff people talk about.  I am not trying to eavesdrop but I can’t block it out without my headphones on.

Then you have the guy in the corner who is snoring away.  The person next to him is getting his dose of antibiotics and prednisone before chemo while drinking his mountain dew and watching CNN.  There is a lady in a wheelchair next to him, who happened to be out front having a cigarette when I came in.  The smell of rubbing alcohol is pervasive.  There are people coughing and hacking here and there.  It makes me reflexively pull the top of my shirt up over my mouth.  I look around and I seem to be the only one bothered by it.  I hate sitting there at lunch time because the spouses start whipping out their Big Mac’s, bologna or meatloaf sandwiches and you are holding your nose, trying not to gag.  I will be so glad to be done with this!  I don’t know what is worse for me, the people coughing and hacking or the poor people having trouble with their IV’s.  The guy right behind me had four different nurses spend over 45 minutes and about 6 attempts to get a vein.  They never did get him hooked up and sent him home to come back another day.  I was climbing out of my chair every time they repeatedly slapped his wrist or arm to try and get a vein to pop out.  I can’t believe I forgot my headphones!  It is such a good buffer.  The funny thing is that I have only seen one other person wearing headphones the whole time I have had therapy.  So I guess it is something with me.  

The only thing that is interesting about being in such an environment is the observation of the people.  One of the things I noticed form the very beginning at MDA and now at the oncology center, are the different stages and states that everyone is in.  They all have different energy levels, expressions, attitudes, demeanor, and body language  There are those who are alert, resigned, optimistic, angry, sad, withdrawn, outgoing, exhausted, scared, weepy, medicated,  lethargic and happy to name a just a few observations.  You can see just about anything and I sometimes wish I would take notes.  It is fascinating for me to observe.   

OK - so here is some of my monkey brain, chemo fog thought process that I will probably edit out later but is on my mind right now.  Please bear with me as I just sat down to give you an update and this ramble came out.

I have been thinking about all the people I have seen at the MDA and oncology center here.  How my perceptions starting off have changed from looking at them to being one of them.  How I would form observational opinions and  judgments about them when I did not even know a thing about them.

One of the things I got from reading “The Shack” (Thanks Jerry) is that it is easy to be judgmental.  How you can establish or perceive superiority over others when you judge them.  There is not a good reason, right or basis to do it and is subjective at best and self serving.  I know I have done it in the past, to what degree I am still evaluating but hopefully I will catch myself before I do it again.  To those of you who have felt judged by me, I apologize.  I did not really understand where I was coming from before.    I am sure there is a lot written on this and I have not yet really read anything on it, but it makes me think.  The book also suggests that we can also subjectively judge what is good and bad.  I am not talking about moral compass type stuff, but, how we may judge that a bad event is actually bad.  Hmmmm, is there another side to what is happening to me?  Does my perception, which is clouded by my judgment, accurately relate to this event in my life.  Our socioeconomic and cultural upbringing along with our life experiences influence how we perceive or judge.  Those who are strong in faith, that believe there is always purpose and nothing is random and accept life events as part of a master plan, don't need to judge for themselves.  I think most of us reflexively do judge.  So, is this event in my life, that I had judged as a terrible and bad thing, actually not a bad thing, and thus my attitude toward it be totally biased?  Can this subjective interpretation effect my outcome?  Just thinking out loud.

Three more treatments, a week or two of zombie land and then the recovery before re-evaluation.

Please hang in there with me.  "Death to Clyde" 

Thanks and Love to all,

Brian

Starting Again

I just got home and I am extremely tired but before I take a nap, I want to fill you in on the last few days.

I arrived at the Oncology center about 8:15 Thursday morning.  I had my lab drawn and then sat in the "patented" chemo recliner. It is a hard, ugly, blue industrial chair that can actually recline if you use the right combination switch pulling and body leverage. They hooked me up to an IV then injected the bright red adrimycin over the the next 20 minutes.  By the time I got home, I had a mild headache but felt OK otherwise.  The headache got progressively worse through the day and night. Tylenol and acupuncture did not touch it. I also had a little nausea that night.

I felt better Friday just in time for my next round at Seton.  Got settled in the room by 12:30 and got my vitals and lab drawn.  They came back in a couple of hours and asked me a lot of questions about leg cramping, heart problems and fatigue.  It seems my potassium level was at a critically low level and they said I had to be admitted overnight since my heart could stop at any time.  It seemed a little melodramatic since I really did not have any overt symptoms, but how can you argue.  Some of the nurses said they have never seen it so low with out any symptoms.  I am beginning to think that I am a bit of an anomaly with high tolerances and pain thresholds.  Or maybe, I am just really out of touch with my body.

So the new plan is, I have to do two, 2 hour bags of potassium drip, wait an hour, draw blood, wait for the results and then determine if chemo can start.  Hmmm, quick math suggests a finishing time at 3 in the morning.  Well so much for a good nights sleep.

They started me on the potassium drip and I got settled when the room phone started ringing.  Wonder who that could be, so I answered.  “your factory warranty is about to expire.  Please call....."  You got to be kidding!  What are the chances of that happening in a hospital room?  I hunkered down and started reading again when the phone started ringing again.  Thinking it might be Glenda, I answered “Hello”

“Who’s this”? Some hispanic male who obviously had a wrong number.  So you know how it goes.

“Well, who’s this”?

“No man, who is this”?  He didn’t sound happy.

“No, who is this”  Of course this could go on forever till the insults start flying.

“No, really, who are you”?  He was getting more upset and I think he thought he had the right number and I was at his woman’s house or something.  As much as I wanted to play this out, I thought, maybe he knows my room number so I quickly hung up.  So much more my little excitement of the day.  I decided to unplug the phone after that.

Five and a half  hours  or so passed and I learned that my potassium was still not at the level they wanted it.  They said it was really really low.  So new plan, go ahead and do the pre hydration, chemo and post hydration.  Then follow with another 4 hours of potassium, and retest before release.  Quick math, ughh, that means I should be wrapping up about 10:30 in the morning.  Oh what a fun night this is going to be.  Bummer!   

I had to deal with at least 6 different head nurses during the night.  Some for only a couple hours at a time.  Each had there own way of doing things. but all wanted vitals and had to check in on everything.  One of them set a bag to drip and didn't check back for two hours and found that it was never working.  A waste of two hours, but since I wasn't going anywhere any how, I did not let it get to me.  

Well I made it through the night with some sleep here and there.  I got the final potassium level back at 10:30 this morning.   My levels are still not up to where they would like it, but they released me any how.  I must have been really low if 8 hours of potassium drip did not restore my levels.  If there is anyone out there still sending me fluid elimination thoughts, I think you can stop now.  All the peeing I have done over the last month is the only reason I can think of, other than medication side effects, that my potassium has dropped so low. 

I am a little nauseated right now but not bad  Mostly very sleepy, so I am signing off and will touch base in a few days.

Lot's of Love,

Brian

Chemo Schedule & Top Ten List

Upcoming Chemo Schedule

Here is my next chemotherapy schedule for the demise of Clyde.   I would appreciate intense visual imagery and prayers of Clyde melting, dissolving, being eaten away, or how ever you imagine it.  It definitely helped last time.  I would really like to get this out of my system with this round of chemo and not have to do it again.  I am sure this is going to finish it, so come on everyone, let’s get Clyde the hell out of Dodge.  Supportive protective thoughts of my good cells and organs would be appreciated as well.  

Thursday  1/22 9  am

Friday 1/23 5  pm

Monday 1/26 9  am

Tuesday 1/27 9:30 am

Wednesday 1/28 9:30 am

Thursday 1/29 10:30am

Friday 1/30 5  pm

Then I get a shot for my bone marrow and immune system on 

Saturday 1/31 12:30 am

The chemotherapeutic agents will be in my system for for several weeks doing their thing, so I will be posting my condition and hopefully you will respond as well as the last time. I can’t tell you how much I could feel your help thru the last round. 

So here is my attempt at Letterman's Top Ten List.

 

The Top Ten Non-Medical Benefits of Chemo

# 10 No more house chores. 

# 9 Better than a skin wax any day!

# 8 Ughh -Don’t make but can’t sense of say what sometimes?

# 7 People only say nice things about you.

# 6 Can say stupid things without consequences.

# 5 A guy can just bust out crying for no reason and it’s OK.

# 4 Get waited on and served no matter how demanding and not have to pay.

# 3 Can lay around on the couch all day, eating and watching TV.

# 2 No more pesky ear hairs!

And the # 1 Non-Medical Benefit of chemo - drum roll please......

# 1 Another valid excuse for shrinkage 

I know - I will keep my day job.

Love to everyone.  Thanks for all your love and support.  My head is in a good place.  See you on the other side.

Brian

Hats!

Sorry I have not posted in a while.  I have been feeling better with each passing day and it seems I am doing more and time has passed quickly.  It seems that the turn around was around 12th and I have just gotten better and better since then.  I feel probably the best I have felt since early October.  Most of the pain and pressure I was experiencing are gone.  I am much more comfortable and can finally sleep on my side with out pain.  I have lost most of the extra water weight which is a big help.  I last weighed in at 155 lbs.  I am sleeping much better overall.  I have some nights where the drugs make it hard to sleep and I get a lot of hot flashes and sweats.  It feels like I have a temperature but I don't.  I am still up every 1 to 2 hours to the bathroom flushing out water.  

I am so much more active.  I am still incredibly weak but I am walking and stretching more.  I was able to walk down to the gate and back today which is about 3000' feet total.  It took all of 20 minutes for me to walk it, but I was happy just the same.  It had been a month since I last did that. I could barely make it upstairs the last several weeks but now I can walk up and down at will. There is noticeably less leg swelling when standing and sitting.  Overall, I feel stronger and I am eating a little more food variety and quantity.  I have even been able to have a few friends over to visit and play music with me.  It is nice to have some return to normalcy around here.

I have increased my oral chemo agent which has caused a slight increase in discomfort.  I have a lot of skin cracking and GI tract issues.  I am still finding  hair in the tub after I shower.  It is just much shorter now.  I have to increase my oral chemo again this week.  I also start my next round of IV chemo again on Thursday.  I will post the schedule in a couple of days so those of you that have time, can help me visualize the final demise of Clyde.

I visited the Oncologist on Friday the 16th and he noted a definite decrease in mass size on palpation.  I had a slight temperature at his office but he said that all my blood values had improved and he was very happy.

Here is my latest picture and a few of me in different hats.  Let me know if you have a favorite.

I will try and post at least two to three times a week from now on even if I have little to say.  Thanks for all the love and support through your e-mails and comments.

Love,

Brian

As Promised

Another good night Sunday.  I slept very well with minimal discomfort.  Most of my leg swelling is gone in the morning but that changes quickly once I am on my feet.  I was warned today by the oncologist about possible blood clots causing the swelling.  So now I have something else to watch out for.  Of course I am walking a lot more, so I am on my feet more.

I had my lab work done again today.  Everything is back to normal.  HOORAY!  I knew I was feeling better but was not sure since I still have a cough and mouth/throat tenderness.  Hopefully later this week I can progress from the soft foods, to something a little more challenging, like pizza.  Then maybe a quick run around town lake.

I promised a picture of my new look.  It feels awkward not to have something on my head.  I usually wear a hooded sweat shirt.  Not because of my look so much, although I  am still shocked when ever I look in the mirror.  My head feels so much more sensitive to the air and temperature.  I will show some hat wear choices on the next blog that you can vote on.  I put my picture on at the very end so you don’t have to look at it while you read this and then you can quickly shut down your computer if you have to. 

All the positive thoughts you are sending my way are obviously helping.  Thanks so much.  I truly appreciate all your time and energy.

Love,

Brian

Weekend Update

Friday night was a horrible night.  I think that heavy duty antibiotic tore me up.  I had a lot of stomach discomfort.  I had to sit up all night and could not sleep at all. It may have been the combination with the bone marrow shot as well.  I slowly felt better as Saturday wore on.  I did get a nap in as my system calmed down a bit.  I was very weepy and emotional most of the day.  It didn’t take much to set me off.

I am continuing to lose hair all over the place.  Can’t lean against anything with out leaving a hair print.  I don’t dare scratch my scalp.  So I took a couple of pictures to show where it is thinning the worst.  The picture above shows I still have a lot of hair, especially on the sides and back.  If you look closely or down from the top, like in the next picture, you can really see what is going on.

So, Saturday night I trimmed my scalp.  I will post those on the next blog after I have shot a  couple of pics.

Saturday night I slept well.  I still had to elevate the head of my bed but at least I was able to sleep.  I also had a lot less stomach discomfort.  I still have mouth and throat sensitivity and have to eat very soft foods.  I am still a bit taste insensitive as well.  My temperature is good although I flush like crazy at night.  I have not gotten any bone pain from the shot that stimulates bone marrow.

Sunday was a very good day.  I was able to walk around quite a bit.  I even did a bit of Qi Gong and sat at the piano for a little to try and play some.  I ate well and felt somewhat normal all things considered.

Tomorrow, I go for lab again and hopefully my immune system is coming around.  

Thanks again for all the great comments, thoughts and prayers.

Love,

Brian

Friday Lab Results

Wednesday night - I could not sleep until 2 am and then I was up every hour there after.  I may have eaten too much as I had a lot of abdominal/stomach discomfort.  I had to keep my head elevated most of the night.  I lost a few more pounds of water however.

I took a shower in the morning and I am officially losing my hair by the clumps now.  There was so much hair in the shower, I thought the drain was going to plug up.  When I toweled my hair dry, another whole layer of hair fell all around me.  Now, every time I run my hand thru my hair, my hand is covered.  So maybe I will lose most of it this time around.  I know I will have to buzz it before I take another shower to prevent future drain maintenance.  I guess it is time for me to start looking at hats.  Maybe I will post some pics of me in different hats and you can all vote on the best look.  What do you think?

I slept well Thursday night. I got an acupuncture treatment that evening.  I was asleep by 10 and slept soundly with no pain or discomfort.  Yes, I missed the last half of the Florida - OSU game and still don't know who won.  I was still up every hour and a half but no real violent coughing spells.  I slept till about 7 and was able to lay flat and even lie on my side a bit the last several hours.  It has been months since I last laid on my side.

Friday - I weighed in at 164 lbs. this morning. It is so nice to be able to bend over and put on socks and shoes.

I had more blood work at the lab today.  They are mostly looking at my absolute neutrofil count. This is a marker of some of the white blood cells that your they use to gauge immune system function.  They generally don’t like it to go below 1000.  At 500, your immune system is very depressed and you should avoid contact with people, wear a mask and they generally will start you on heavy duty antibiotics and shots of Neupogen which stimulates bone marrow production.  

Back on 12/30/09, my ANC was at 6500, which is very good.  On 1/7/09, my ANC was at 600 and today it was at 300.  Not good at all!  I really don't have an immune system at this time. Luckily, I don’t have a fever otherwise I would be in a hospital right now.  So I had to get the Neupogen shot today.  They said the biggest side effect is bone pain, mostly in the hips and legs.  They also put me on an antibiotic to prevent the development on any infections.  Hopefully my immune system will kick in gear this weekend and I will not have any infections.  I am starting to get a hospital phobia.  I have to be real careful what I eat and how my foods are prepared.  As well as all the other sanitation/hygiene things to look out for.  I still can not receive visitors as you can understand.

It is all a big bummer because I really thought I was coming around. (Except of course for the hair.)  I have had more energy, some good nights, less pain and discomfort and my improved ability to get up and around.   

I am doing my best to stay up beat about what I am calling, "Brian's Adventure Challenge".  I appreciate all your love and support.  Please keep all the positive thoughts heading my way.  It really helps when I am dejected and down.

Love,

Brian

Oncologist Visit

(I want to thank Buck Cash for allowing me to use his cartoons on my blog)

I have only been able to sleep an hour at a time between bathroom breaks, but I guess it is a fair trade off to lose all this extra water weight.  I weighed in at 168 lbs. this morning.  A week ago I was 193 lbs.  I can almost lie flat in bed once again but I have not tried my side yet.  There is definitely less pressure and pain.  I was able to stand longer and walk further today before the leg and foot swelling started.  Still having violent coughing spells at night that leave me pretty wiped out.  Hopefully it is my body's way of shaking out some junk.  I still have mouth and throat sensitivity and a wee bit of heartburn/reflux going on.  I still have to eat soft and bland.

The oncologist thought there was a noticeable decrease in the size of the mass with palpation although there was no definitive diagnostic imaging run.  I can certainly feel less pressure.  

He was happy and thought the chemo has shown benefit.  He was concerned about my lab however.  It seems my White Blood cell count has dipped down to a level of concern and wants me back in two days for a follow up lab.  He doesn’t want the bone marrow to be suppressed to the point where I can not fight off anything.  Luckily my temperature has not spiked otherwise they would assume infection and put me on antibiotics.  So unfortunately, I will not be seeing any visitors any time soon.

My digestive system is still not quite up to par so I have not been getting the protein and calories I need, although I am doing better.  I start again on the 21st, so I have two weeks to get my system ready to fight the next battle.   Positive thoughts would be appreciated.

Well I had another reality moment that I need to document.  After my shower, there was hair all over the place.  I looked on my pillow case and sure enough it was full of hair.  Hmmm - is this the start?  I don’t think so.  I still have a lot of hair left and it wasn’t like it was coming out in clumps.  Just the same, it grabbed my attention.  The next round might do the trick and then I can make like a younger, skinnier Telly Savalas.  Maybe even adopt his singing style.  Check it out on You-Tube, pretty funny stuff!

I found the Man v.s. Food on cable.  Man, have you seen some of the stuff that guy eats?  Oh I can’t wait!

Thanks again for all the good positive vibes coming my way.

Love to you all!

Brian

Better Thanks!

I know everyone wants day to day updates on I how I am but I don't know if that will happen. Here is where I am at now.   I am better today than I have been in the last several weeks.  HOO YA!

The last few days I have been in that brain fog place, just kind of a zombie.  Not much of an appetite, not feeling real good, very little energy.  I have been able to get in a couple of good naps, eat few good meals and stay hydrated.  

Last night I was able to get some good sleep between bathroom breaks.  I think that was partially due to the violent coughing spell I had earlier in the night that kind of left me wiped out.  For some reason, it seemed to increase my urine output thru the night even though I have reduced my fluid intake.  I weighed in at 177 lb this morning so I have lost a good 15 lbs of fluid in the last several days.  There is definitely less swelling and discomfort in my abdomen but my feet and legs still swell with standing, sitting and walking.  Although, that too is better.  I was able to walk a bit more than usual today.  Bp is better, temp still good.  I woke with a headache today and have not been able to shake it.   I had to increase my oral chemo agent by 500 mg today.  They want me up to 2500 mgs in the next couple of weeks.  My hiccups are better today.  My appetite and taste is also better but I still have to eat very soft, bland foods due to mouth and throat sensitivity.  I keep thinking of all the foods I would like to eat but can’t.  I am starting to flip to food channels now to see what they are making.

I have a big list of affirmations and visualizations I do daily.  Here is one that has been stuck in my head the last several days.

My latest visualization is me of a young sapling tree.  I am about 5 feet tall with no leaves and just a few branches.  I am being buffeted by the the cold harsh wind and I am swaying back and forth, resilient, bending and yielding.  I can hear the wind whistling through my few little branches like a wind barreling through an old desert town in an old cowboy movie.  I am at peace and not stressed, just swaying with the wind.  I see my self coming to life in the spring.  Growing leaves, becoming vibrant and colorful once again.  

Thanks for staying connected to me.  I can feel you!

Love,

Brian

Symptom Update

Just a real fast update since several have asked.

As you know, my last chemo treatment of this cycle was Wednesday.  I got to Seton about 12:45 for check in and got to my room about 1:30.  It took them till about 4:30 to get started so we did not get out of there till 10:30 that night.  I had to take my oral agent when I got home at 11.  I think it left a hole in my stomach that night.  I could feel the burn in the morning.  

They weighed me at 193 lbs. so I finally realized that I must have about 30 lbs. of fluid accumulation from my abdomen down to my feet.  No wonder I can’t walk or sit for more than a minute at a time.  I spend most of the day semi reclined with my feet up.  My blood pressure was a little better this time around but still high.  Temperature and other vitals good!

I did not sleep very well as usual.  Up about every hour and a half.  Still can't lay flat on my back or sides.

I felt pretty tired and beat up all day Thursday.  Heart burn most of the day.  Could not drink fluids with out the hiccups.  Started getting tongue sensitivity.  It became more difficult to eat and drink through the day.  Felt wired but lethargic at the same time and could not take a nap.  Mostly read and channel surfed.

I think I had one of the worst nights ever last night.  Maybe 2 hours of sleep total.  Would get random jerking hiccups.  Would try and drink some juice and would get hiccups and spill the drink on me.  Horrible sore throat, could not swallow, breath, drink or sleep.  

Had to keep back and head elevated most of the night.  Did not even try to sleep after 3 am.  Felt like my throat was closing off my airway and I had to clear the airway to breathe every minute or so.

When I think back just two weeks ago, before the  hospital incident,  I was able to walk up and down our drive, practice Qi gong, cook, maintain my leg swelling, drive, sit and play the piano and function in most daily activities.  At this point, I can't do any of those things.  It is hard to walk from one room to the next.

I am sure all this will pass or morph to something else in the next few days.  I am just lying low and hoping all will pass soon so I can be prepared for the next round.  Needless to say, I am not very fun to be around!

Till next time,

B