Day +36

Yesterday I went to VCU for a Doctors appointment, labs, and to get the port removed from my chest.

First off, it feels great not to have the external port! I now have full range of motion back again in my left arm and shoulder.  Not having to worry about it and care for it daily, is a big plus!

Labs and doctors appointment went as expected, all is well and proceeding as expected!  I can be released to my local Doctor anytime.  

The next big event will be the bone marrow biopsy at 100 days, already scheduled for early October.  

Day 28. Discharge news

Clinic appointment and a doctors appointment today.

Clinic appointment went as usual, but not the Doctors appointment. 

I am being discharged on FRIDAY!  If my labs are ok on Friday, and there is no reason to think that they wouldn't be, I'm outta here !!  Back home and once a week visits to the clinic in Richmond or my local Oncologist for labs only!

Now I still have my catheter in place, they will try to get it removed by Friday if not I'll make the trip next week for removal.

looking foward to being home!

Day +27

No posts for a few days, because there is not much to report.

 Here is the latest news, catheter is supposed to come out this week, but they can't seem to get the appointment made.  They are talking about going to twice a week clinic visits, instead of the three times a week that I'm on now. 

 Going to the clinic is just a nice break in my day, nothing happens, they draw labs, then tell me I don't need anything and send me on my way.  I'm hopeful that once the catheter is out and I'm on twice a week clinic visits, I'll be allow to go home and just drive down for the twice week visits. Could be within the next 2-3 weeks.

Meanwhile I try to stay busy during my non clinic days, with movies, Netflix, jigsaw puzzles, crossword puzzles, etc.  We are walking twice a day, outside in the morning before it gets to hot and in the evening, after dinner, usually inside at a local mall.

Dat +23

No post over the last few days, well, because, not much has happened medical wise.  I spent Wednesday in the clinic just waiting for my weekly appt with the Doctor, he confirmed that I'm doing great, but warned that my immune system is still very young.  He did mention that next week if things keep going along like this, they will probably remove the large catheter in my chest.

Had Thursday off from the clinic because I didn't need any thing Tuesday or Wednesday, back today at 1 pm and if this trend continues, I'll probably be off from the clinic till Monday.   Nice to have the weekend off, would be even better if I could get home for a few days.

Eric and Jeff came for a visit on Wednesday, what a nice time!  

I'll post later if anything of consequence happens today at the clinic.

Day +20

Things are going very well, last 2 days in the clinic have been fluids only, all my labs are either in the normal range or above the minimums for replacement.  My WBC are actually higher then the day I checked in to the hospital! Super stem cells indeed!!

So because my numbers are so good, I've  started negotiating for a weekend at home, it's up to the numbers and the doctor however. I of course, do whatever they say. 

I have had some kind of allergic reaction, which started Sunday, from head to toe.  finally got some prednisone in me yesterday and feel much better.  They are not sure if it was caused by a drug or food reaction, sometimes the body does this in response to the new growth of cells, and in my case because I was an auto transplant, it's rarer by does happen.

The last 2 days I have felt great, my energy level is rising, my appetite has returned (I have lost about 15 pounds over the last 4 weeks) my thirst is starting to come back, and my attitude remains positive.  Today is actually 4 weeks in Richmond, 3 inpatient and one outpatient, I'm hoping for a max of another 2 weeks more then home.    

Dan came today for a visit, Lauren come yesterday, but only had a few hours and I missed her cause I was in the clinic.  Seth is hanging around and is being quite helpful, but he will be heading home tomorrow night or thursday.

Day 18

Not to much going on the medical front the last couple of days, I got a day off from the clinc on Saturday, and only needed fluids today when I went today.  That is good news as far as I am concerned!

The only other thing is I have developed a full body rash, possibly an allergic reaction to something, I saw the doctor today but they have no idea.

Lots of visitors today, it made for a fun day, and the day went super fast!  Brett Taylor, my neighbor Jeff Olszewski, and all the way from Naples Florida, Seth Markowitz!  Seth is going to be around for a few days, to help out.

Not much else going on, till tomorrow!

Day +16

Day three in the clinic.  Yesterday I posted prior to seeing my labs.  So yesterday's labs my WBC and neutrophils had fallin by more than 50 %.  This is normal during the recovery process.  I received sone neupogen yesterday and today the counts are back up big time. In fact they are in the normal range for the first time!

I was very happy to see that, the low WBC's make me feel lousy, no appetite or energy.  I don't feel like being social and just want to sleep..  

today I tried walking on the treadmill at the hotel because it is was so hot outside, I much prefer to walk outside, then on the treadmill. I'll have to make an effort to get up earlier and walk before it gets hot.  Saturday morning we are going to try to get over to the mall and walk with the other old coots.

Weekend is coming and I'll still need to report to the clinic daily unless they tell me otherwise.

That's all for now

Day + 15

Sitting here in the outpatient clinic for the second day, it is very low key.  There are 8 chairs, really more like super recliners.  You come in and they check your vitals, run your labs, then start you on fluids right away.  One of the hardest things for me so far is drinking.  For some reason it's hard to maintain my fluid intake, even water tastes bad.  I'm required to keep track of my fluid intake daily and is pitiful.  I'm glad that they can help me by giving me fluids via IV.

So far all I have received in the clinic is potassium, calcium, and magnesium.  There are two different types of transplants, allo and auto.  Allo uses a donor and auto uses your own stem cells.  The allo's need a lot more care, so they come in early, the auto need less care so we come in in the afternoon.  Yesterday I was here for about 3 hours, and unless I need some blood products, today should be the same.

Had a visit from Jim Martin last night, direct from Florida! He is on his way to Maine.  Came up on the auto train, and came down to see me with Warren.  Hope I get to see him on his way back to Florida.  

Another walk outside this morning, there are two office buildings next to the hotel, and a walk around the perimeter of all the parking lots is about one mile.  Very humid, but I really like being outside! Hoping to start walking in the evenings soon also.

Thats all for now.

Day + 14

Good nights sleep in the hotel last night, no one to wake me at 12 and 4, or keep me up with replenishments!

Took my first walk outside this morning, wanted to get an outside walk in before it got hot.  It was still humid, and was harder then the climate controlled hospital.  But it felt great to have a small measure of freedom.

Joe and Dan came over yesterday and spent several hours with us at the hotel.  

Caroline has to prepare all my food, I'm not allowed to do any food prep or clean up.  I am very slowly tranitioning to a more normal diet, I'll be adding one or two new foods a day, this mornings food was a banana. Even though it has a peel the outside still needs to be washed!

My first outpatient clinic appointment is at 2:30 this afternoon, I'll have to go to the clinic daily, including weekends, for the next 2-3 weeks.  No idea how long I'll be there each day, until they draw and get the labs back to see what I need.  I do know that the clinic closes at 6 each day, so the more you need done the earlier you go in.

Day +13

Day 13 starts with a bang: being discharged from the hospital this afternoon. 

My white blood cell numbers didn't quite double overnight,  but got high enough to kick me outta here!  Been in the hospital for three weeks now and I'm ready to go.  Of course I'll still need to report to the outpatient clinic here in Richmond, daily For another 2-3 weeks.

needless to say I'm excited to be discharged, and have a small amount of freedom, im look forward to feeling sun again.

Day +11

Some exciting news, my white blood cell counts have started to go up, they have doubled the last 2 days and now stand at .8!  They need to be at least 5 before they would consider letting me go, just for reference they were 8.6 the day I checked in.

AND when the Doctor came in for rounds today he wanted to make sure we had made arrangements to be close to the hospital because unless something out of the ordinary occurs, they will be kicking me outta here some time this week!  Best guess will be Thursday or Friday, with a slight chance at Wednesday!

Other than that, it was a quiet night no replenishments so I was only woken up at 12 am and 4 am.  It felt like a full nights rest!  Today has been quiet, but I feel like I have more energy, whether from a good nights sleep or from the blood transfusion yesterday....either way I'll take it.

Yet another + 10

Still having trouble getting the days right, apparently yesterday was day +9.  It's like the movie Groundhog Day !

Another late night last night, they where down one nurse and didn't start my replenishments till after 9 pm..  I got the usual calcium,magnesium,and potassium Plus playlets 

they drew labs around 5 am and I received a unit of blood starting at 4 this afternoon, they just drew my evening labs (7pm) so it'll be several hours before they all come back.  

I started a new diet today, it's called the gastrointestinal one diet, it still remains very bland but gives me many more choices.  I can only add one or two new items a day however.  Still it is a big improvement over the Mucositis diet.

Rachel came down this afternoon and the three of use had a fun time playing cards, I'm not sure but I think that they ganged up on me!

Going to stay up tonight a bit later, usually I'm toast by 8 pm and start getting ready to sack out. But the fireworks is at the race track tonight, and my window faces that direction, hopefully I'll be able to see them.

that's all for now.

more tomorrow!

Day +10

Had a very uneventful day yesterday till about 6 pm.  My normal temperature is in the 97's so   Around 6 pm I started to Get a fever with my temperature hitting 100.3 around 3-4 am.

now the protocol for fever in the BMT clinic is they do nothing but monitor you, untill it gets above 100.5 at which point they will start to give you antibiotics and run lab cultures to see what's going on.  

Another possibility was that the fever could be caused by the engraphment (stem cells doing their thing!) process, and is actually a good sign that things are moving along in the correct direction.  This is what I'm going with, my temperature has been slowly receding since it topped out at 100.3.

Of course last night they came in every hour to take my temperature.....a hospital is no place to get any rest.  Unless you sleep all day, then no one bothers you!

I woke up this morning to find that Tracey and Ed Deegan had come down for visit, it was great to see them.  They got here at 8 am! Must have left Manassas at 5 am.  Thanks for the effort!

Joseph is on his way down for a visit this afternoon, looking forward to seeing him.

Day +8

July 1

Last night turned into a fun night, the afternoon labs showed that my platelets dropped by 60% and my hemoglobin fell by 40%.  Just as they have predicted they would!  So starting around 9 pm I received a blood transfusion, platelets, 4 bags of potassium, 2 bags of calcium, and my Neupogen.  

All this took until about 1 am, so not much sleep was had till after 1:30,  and then of course back up at 4am for vitals.  Slept in till about 8 am, but need more.  An afternoon nap is on my list for today.

As much as this isn't fun, it means that things are continuing to move along in the right direction, in the appropriate time frame.

They asked me yesterday if my hair has started to fall out, and to be honest it's tough to tell sometimes, but this morning in the shower it was quite evident, my facial hair was coming out in clumps!  The little bit on top is holding strong right now.

Still on the Mucositis diet, and the novelty has pretty much worn off, I'm glad the my stomach doesn't hurt any more, but I sure wouldn't mind some other food.