Home

I was discharged on Wednesday. This was day 12 and not too bad because it was on the low end of the 12-16 day range in which my body could respond to the new stem cells. My platelet count rose from 13 to 17,000 which indicated that my body is making platelets on it's own. This is great because the platelets are usually the last cell line to spring back.

So I am home in Colonie. I am taking it easy as I have to consider my immune system is like that of a new born baby. I have some cautious limitations... no public exposure without a mask, but I can be outside without a mask. Daily walks are encouraged. Daily showers and food limitations are being followed until my doctor clears this off. No take out or restaurants for a while. Meat and veggies need to be cooked well. A small price to pay for a new immune system.
My meds are minor, vitamins, folic acid, an antibiotic and acyclovir an anti viral drug for a year. childhood immune shots will have to be given again.. I Hope I get a lollypop...

Through all this I continue to marvel, praise and thank God for all He has done in my life this past year. my eyes have been opened up to His ways and means and He amazes me every day. We serve an Awesome God.. full of grace and love for us all.

BWH up to Day 7 (3/29/2013)

Well it's been a crazy past few days.  The mouth sores have continued but they respond well to the pain killer.  I've receive 3 units of blood, 1 on yesterday and 2 on Wednesday.  We also have been keeping an eye on my platelets which were 3,000 /cc3 this morning so I be getting a unit of those today.
White counts are the biggy.  I've gotten 2 shots of neupogen and today I'll get another. My count today was 0.05 /mm3 which is actually up from 0.02 and 0.03 the past few days.  That's good trend.
Doctor Wu and her PA came in today and the "D" word was used a couple of times.. no not diarrhea, but discharge.  Cathy and Andy are here today..  Joni and Kayla are on the way.  Peter, Holly and Annie will come out on Sunday..Jon and Sammy...maybe Saturday.  Some staff are saying .. Oh I'm off later this week and you will probably not be here when I get back..
These are all very encouraging but I'd like a date please.. :-)

Also I just noticed today my hair is falling out yet again..  I can always tell because my mustache "feels sore".. Then I do the back of the head test and sure enough, hair between the thumb and the index finger.. but the funny thing is I mentioned it to the doctors this morning and she said, I looked good bald..  lol .. Oh well, the third time is a charm right..  

BWH Day +2 (Sun.) and +3 (Mon.)

Yesterday was a relaxing day,  No visitors, but I did have a Skype call with my mom and brother Joe.  The rest of the day was truly a  day of rest.  I watched a couple of movies, MIB3 and Joyful Noise.  I liked both movies.
I am still feeling well although last night I did notice that my throat is a little sore.  Kinda like a lump in it.  This is a known side effect of the chemo.  The chemo effects rapid growing cells which includes the lining of the esophagus and intestine.  Once my cells come back these symptoms will subside.

Today is day +3.... Was visited by a very nice PA student who was doing some clinical rotation.  I agreed to him interviewing me and a physical examination.  He was an EMT who went into a PA program.
Cathy is here today and we walked outside of the room around the 30 feet or so of the wing.  It's funny to see the nurses I've only know with masks on, unveiled in the lights of the hallway.  Marissa, Courtney and Shannon.. great servants to the sick.  God bless them all.  Had a nice shower, and who does not feel better after a shower.  
WBC count is low.. 90 cells /mm3.. normal levels are like 3000 - 7000 cells/mm3, so yeah it's low !!
From what we are told, I have neupogen shots scheduled for Day +5 which will help boost the stem cells to produce cells.  That will be Wednesday.  So I am hoping to see counts start to go up this weekend..
I'll keep everyone informed.

BWH - Day 0 - +1

As a transplant patient when you are admitted the days are counted don backwards from the date of your infusion. 
As I told the nurse... oh it's like golf... -2,-1,0 (or par), +1,+2 etc..
So the past few days I did not blog because I was taking the chemo drugs.  Those went in well but I did get sick once...  They hype you up on fluids and you know the old saying.. what goes in must come out.. and be measured ...

Yesterday was Day 0.. Happy Birthday to me !!
My cells were infused around 12:30 yesterday,  over about a 25 minute period.  I took the infusion well.. So now we sit tight.  My counts will drop and then rise again... hmmmm sounds familiar ??
Supportive care until discharge.
I'll be getting a cell count chart today from my nurse.. so I can keep track of them too..

One thing that is really funny ...  I've had some real crazy dreams..
Here's a taste..
I was driving our old van south on 787 with Gandalf the grey following me on one of those spider motorcycles. and there was a storm coming in...Right by the olde D&H building a HUGE blast of wind hit the van I was in.  I looked behind and saw Gandalf on his bike getting blow off the road by the wind... Then I woke up.

Weird huh ??

Transplant - Day 2

Last night I did not get much sleep.   Between the vitals needing to be taken, and the hanging of meds, and the occasional beeping alarm of the infusion pumps, yeah I kinda slept in 1-2 hr blocks.. Oh and the bathroom runs also.. lets not forget about the bathroom runs.. 
My mom and brother Joe stopped in today and spent the day with us.  We had a nice masked visit.. Cathy has been great.  Right by my side the whole time. I was also visited by the chaplain this afternoon.  It was nice to chat with her and she prayed for me and my family. 
Appetite is a little light but I think I'm actually eating a little too much 3 times a day...

But all and all I'm still hanging in there, strong just tired. 

Transplant.. day one..

Was admitted yesterday afternoon about 5pm.  After a short stop on the 5th floor a room opened up on the 4th floor which is one of the stem cell wards. Cathy, Jon and Annie left before I moved down to the 4th floor.  So it's like once you get into the room and the door is shut that's it.. you are isolated.  Nursing folks come in with gowns, masks and gloves. I have a small fridge in the room but apparently they frown on stocking it with Sam Adams... Gee... I wonder why ??  The room is not near a street and that has good points and bad. It's quiet.. you do not hear any traffic or sirens as we did when we stayed at the hotel.  Chemo will start today.. probably in a few hours if not sooner.  Cathy will be here this week and although the solitude is good at times.  It's good to have company. Expecting to get the Hickman covered up so I can get a shower and a better fitting pair of hospital scrubs on.  Would also like to loose the hospital gown... they are just uncomfortable.. and way too hot for me.  I do have temperature control of the room which is great because I do like a cooler room.. Hopefully a food menu will be coming in soon .. I wonder if I'll get a cup of coffee.. ???

Milestone 1 - NAILED !!!

Milestone 1:  White cell boost, Stem cell harvest..
As I mentioned yesterday I spent the whole day on the pheresis machine.  Came back to the hotel, ate dinner and by then I was pretty wiped.   About 7:15 we got a call from my stem cell nurse.  I needed 2 million cells to move forward and get admitted... I actually harvested 3.1 million.  So we were cleared to come home today which we did after a decent night's sleep and a good breakfast.  we were on the road no later than 9:30 and home just before noon.  So I'm relaxing.. NOT reading work e-mails, and watching basketball with my kids.  Saturday we will head back over to Boston for the admission and the long stretch.  I figure with an extra million stem cells that might help my recovery a little huh ??  More tomorrow after I get admitted.. and I'll even post some pics, now that I know how to..lol...

first day of the harvest..

ok so today is the first day of the stem cell harvest. my nurse draws a cbc on me and when the result come back 20 min. later.. i was a bit shocked that my white count was over 50,000.. being on chemo and getting used to wbc counts less than 5 or so i guess the neupogen works.

One year when we went to Toronto to a conference there was a speaker there named Melinda Fish. Melinda had a term coined an "accidental intercession"..
Sunday when I went in to get my shot, there were two other patients there. I really did not notice.. then on Monday the same nurse that gave me my shot told me that one of the women who was in the office on Sunday was going to Boston also. So I kinda pushed that down in my priority list because, what are the chances... really of meeting up with a fellow Albanian. ..

So we come in today to get my harvest going and our nurse asks us where we are from, of course we say Albany. Well to our surprise, the nurse says.. you know the women in around the corner is from near Albany.. so Cathy goes around the corner and introduces herself and would you believe, this was one of the girls from my Sunday office visit.. and she knows my sister in law.. so we shot a picture..
May God grant you peace and health Barbara. May the Holy Spirit comfort you and give you strength and peace. May Jesus our healing touch you with His hands of Grace.

Accidental intercessions.. you gotta love them.

Boston stem cell 3/3/13

Well after getting a late start out of Albany yesterday (3/12) and traveling yet again through the rain, dark and road spray, we arrived in Boston around 8pm.
We rose this morning to meet a 7:00am appointment with the BWH radiology department who were so kind to place my Hickman. I cannot say enough about the staff of these facilities. Everyone is just wonderful.
The Hickman went in without a hitch. I am a little sore but its like a slight muscle strain.
After that we shot over to the doctors office and I had some blood work done and a neupogen shot.
We then went for a nice walk, had lunch and relaxed for the afternoon. The nurse called and said the CD 32 level which measures the concentration of stem cells was at 5.5.. that's good.. it has to be above 5.0 to have a pheresis done.. but the nurse wants to give me a mozipil shot to bump the CD32 level even more.
So we are going over tonight at 7pm to get the shot and will be reporting at 7am for my first pheresis. The pheresis will be done through the Hickman.. so no needle sticks.. its just going to be a long boring day.

more tomorrow...

The Schedule has arrived !!

As some may know I have been getting treated for a lymphoma that was diagnosed last year.  Progress is good and my doctors have recommended that I undergo a stem cell transplant.  Much like what my brother had… for the family… who remembers the French maid party ?? boy did we zing him..  anywho.. I digress..

Cathy and I have received or plan and here are the dates..

Basically the transplant process will begin on March 10 with daily white cell booster shots to stimulate stem cell growth.

Tuesday 3/12 we head to Boston, Dana Farber where Joe was..…. Jim.. I won’t be at practice that night..

Stem cells are collected on the 14^th and 15.. and I’ll probably head home for a day or so..

3/19 I get admitted between 4-7pm..

3/20-23 high dose chemo is given to kill off the white cells..

Sunday 3/24.. a day of rest.. To my OSL family.. please keep lift me in prayer that day !!

3/25.. Stem cells are re-infused.

From here on in I get supportive care.. which may include antibiotics, blood or platelets..

week of 3/31 – still hospitalized..

week of 7/7 is scheduled as a tentative discharge week.. which will be great because I’m hoping to be home before Jon’s Birthday on the 13^th.

Once I return it’s expected that I will have limitations on exposure to crowds as my immune system recovers.  I have been working from home and my supervisor has indicated that I can continue to do that.  I have moved my “office” out of the basement upstairs to a more appropriate area for when I come home.

I’m going to be on Skype, and the blogger page is still updated.. I’m also looking at a publishing a web site to, just to keep me busy..

So that’s about it.. Lets pray this chapter of my life is finishing up and a new chapter will start with the two weddings we have this year..

Rice round 3 under my belt..

Well I have completed three rounds of the rice protocol and the biggest problem I dealt with in the hospital was the boredom.. I had my neulastin shot yesterday.. Thanks to AJ who stayed and waited for me around 4:30 ish.
I also found out this week that I have to have a tooth extracted. This tooth is referred to as #29...right side. It had a root canal done many years ago, was capped with a post. And the cap began to fall off I had a root extension done, which basically retract the gum down so more root will show and will have a better surface for the cement to adhere to.. Well over the years the crown has come out at least 3 times and it was replaced.. This last time I figure that's it.. And left it out.. Then I started treatments. Dana Farber wanted a dental exam and my dentist recommended the tooth finally be yanked as to remove a possible source of infection. So I saw the oral surgeon who worked on my first tooth implant and he said the root was actually split and that is why the posted crown kept coming out. So this is scheduled for the 12th. We are also going to insert bone graft material into the root void to assist healing, plug the hole to prevent infection, and prep the spot for a future implant.

Today I am feeling good.. A little tired but nothing I can't deal with. One thing to do today.. Going to BJs to get soda for the Super Bowl party tomorrow..

Dana Farber visit

Happy Friday folks..

Well yesterday’s visit to Boston was very interesting..
We discovered a simple path to the hospital.. which was real fast.. .and once we parked and got into Dana Farber (DF) we were actually a little early. So we hit the cafeteria and had some coffee .,..
The registration was the usual insurance information exchange and I did consent to a having any extra blood specimens be allowed to be used in research there at DF.
We then went to the doctor’s office and after vitals were taken actually saw the doctor at the appointment time of 3pm..
We met with a Dr. Fisher whom we liked right off the bat. He basically discussed my case and lymphomas in general. We did tell him that Cathy and I are both Med. Techs so he did not have to dumb it down too much. His discussions were right in line with what we are hearing.. and he feels that the stem cell transplant is an excellent move to possible cure.. He looked at the most recent PET scan (1/22) and said it looked “real good”.. so I’m thinking I may be in remission right now..

So we moved onto the specifics and here is how it’s looking as we move ahead..

- RICE round 3 will proceed in Albany.. This is on my calendar for next week Monday – Wednesday. (1/28-30).
- Rest 3 weeks
- Dr. Fisher wants a 4th round of RICE in Albany.. (target date 2/18 – 20)
- Rest 3 weeks..
- The dates on the next items are up in the air but I will need to go back to DF for prelim. testing.. Blood work, PFT, Echocardiogram .. but that might be just one day.. That schedule is being worked on..
- The next event would be to begin boosting the stem cell production. I believe these shots can be given in Albany and may begin mid March.
- Right now we are looking at the stem cell harvest to be the first week of April.. with the admission and transplant to occur the following week. That date looks to be getting booked..
- Hospital admission they tell me is 18-21 days.. I told them they have 2 weeks… ANC count of only 1500 is needed for D/C. I can do that is 12 days I told them… The nurses eye brows raised..
- Post follow up can be done in Albany.
- Doctor says I should be healthy for the Peter’s wedding in June..

We got loads of reading material.. and once I get home I will have some restrictions.. basically to become a Sheldon..

So that’s the info as I got it..

Watch out stem cells

Cathy and I met with the Director of the AMC stem cell program yesterday. He has researched my case and agreed with Dr. W about moving forwarded with the stem cell transplant. He also indicated that the AMC staff have a closes consultative relationship with Dana Farber in Boston. There is on fly in the ointment though.. AMC does not have a contract with my insurance company but Dana Farber is in contract with my insurance provider.

The doctor looked at my most recent PET scan and he could not tell if the small amount of activity was due to disease, inflammation, or some other activity.. He actually thought it might be possible that I am already in remission because that scan was done before the RICE treatments began.

So I am working this morning and the phone rings with AMC on the caller ID.. So I grab it and it's the doctor from the stem cell program. The doctor said that he had already called Boston to discuss my case and Boston want to see me. They feel I'm an excellent candidate for a stem cell transplant. So the referral process to Dana Farber has begun... I will have my PET scan next week and see Dr. Charlie on Thursday. The last round of RICE treatment will be don on the week of the 28th and then we will see how the schedule gels together.

I can't say anything else but Praise God !

More work to do..

Happy New Year. I hope your holidays were as restful and enjoyable as mine were..

Let me fill you in..

After the last treatment back in October I had a PET scan done as a normal follow up to the chemo. Dr. Charlie liked to results but there is some residual lymphoma but a decreased metabolic activity in the lymphoma was also very good news.

So Dr. Charlie recommended that we go through 3 sessions of a RICE protocol. This protocol takes 3 days to infuse. One day in the NYOH office and then I get admitted overnight to St. Mary's hospital for the rest of the infusion.

My first infusion was accompanied by a rather nasty cold. It was not fun.. Coughing and being tired.. Was the worst. This treatment did have a couple of other side effects I've not had the opportunity to enjoy.. Luckily they only lasted one day. One effect was the result of the neulastin shot that is included in this protocol.

Well my second treatment 3weeks later went much better. This treatment concluded this week and with the cold finally gone, all I seem to be dealing with is some general weakness.

I have one more treatment scheduled for January 28th. Before that I have a PET scan on the 21st.

Dr. Charlie is now recommending a stem cell transplant as the next step to really treat as much as possible and go for a cure. We are on board with this.. And February could be a busy month.

Will try to stay up on the blogs as best I can..

Thank you and God Bless.

finishingup

I know it has been a while since my last post but that is actually a good thing.  To catch you up.. after treatment #6 my doctor took me off the adriamycin.  A nurse call it "the red devil".. and she was right.  Doc substituted another med in it's place and and ordered an echo-cardiogram.. The echo was normal.. thank God.. because the adriamycin has a side effect on the heart.

Round 7 was given 3 weeks ago with the substituted med and I tolerated it so much better..  It's the third week and I feel like my old self.  Still dealing with numbness in the hands and feet.  My weight is 206 which is a little more that what I want, but I'll deal with that later.  My last treatment is Wednesday 10/31.. Halloween.  I'm hoping the nurses dress up.. I have a PET scan scheduled for December 3rd and a doctor's appointment on 12/7.
I'm still working from home as my white counts are below 3.0 consistently.. I have not been sick like with a cold or fever.. which is great and even though at times my WBC is low, and my neutrophil count were low before my treatments, my counts have come back to a point where I can take my treatment without getting a Neurlasta shot..

So I'm looking forward to being done.. getting my hair back, and the feelings in my fingers too..

Thanks you all for your prayers and thoughts.. God Bless you all as we begin to enter into the holiday season..

Round 6

After Round 4 I had a CT scan.  The results came back pretty good.. The lymphoma has shrunk in half and it's response to the chem is very good.  All my organs are normal.. things inside are great !   I met with y doctor who is recommending we take this out to 8 treatments,  which is what I was planning on anyway.. So today was round 6.. My CBC last week had a WBC of 1.7 which the doctor felt was low.. so we had another one done today and my WBC bounced back to 2.5 which meant I did not need a shot of neulastin.
So I tool my treatment and mom took me to lunch after I was done.. Thanks mom !!  I came home and took a nice nap and am now relaxing, watching The Big Bang Theory..   So six down and two to go, then life should return to normal.. well almost.. We are now looking at 2 weddings this year.. Peter and Holly in June, and Jon got engaged to Sammy this weekend.. They are looking at a late summer wedding.. we are so excited for both couples and I get 2 beautiful daughters in addition to my beautiful Annie..

Pre-round 5 appointment

It's been a while and things have been good.  I've been feeling real good after the last couple of rounds of chemo.  After the first day or so I'm bouncing back better.  Today I went to the doctor for the pre-chemo visit.  My weight is increasing.. I'm at 200 lbs now.. which I may want to hold back a few pounds.. I like the 180-190 range myself.  My white count is normal and my hemoglobin and hematocrit is back up to the 14 and 42 range respectively. That explains my energy.. We got a copy of the CT scan I had last week and the scan reported good news.  The lymphoma has shrunk to about half it's size and reports the chemo is working quite well with all my internal organs normal.  Praise GOD !!!
I've been exploring additional activities this week as I was on vacation.  Andrew and I went to the driving range and hit a bucket of balls.  I helped Jon out today with his "water extravaganza" youth event.. that was fun and boy am I tired.. So round 5 is scheduled for Monday morning.. let's keep shrinking this thing !!

Pre-Round 4 doctors appointment..

I'm recovering from round 3 really well.  It seems like it took a few more days for my digestion track to spring back but once everything evened out I feel great.  Yesterday I felt like getting some exercise so I went out and mowed the lawn.  Boy did that feel good.

Today I had my doctor's appointment prior to my next round of chemo.  The doctor and the nurse practitioner examined me and neither one of them could detect an abdominal mass or any enlarged nodes. The doctor and the NP were very happy with my progress.  Dr. Charlie actually said I was doing fantastic. 
Round 4 is scheduled for this Wednesday.  We are 99% sure that I'll only need a total of 6 treatments.  I'll get scheduled for a CAT scan around the 20th of August.  I am at the top of the hill and can start coming down the other side of the hill.

Round 3 day 5

Sunday.
The weekend went pretty well.  In all  honesty I felt a little drawn out this weekend.  A little tired as the meds work their way through. So I take it easy..  Pick one thing a day and accomplish that.  Saturday I went to see Spiderman with Andrew, Jon and Sammy.. Loved the movie !!   Sunday I went to church and then to my moms with Peter and Holly.  Went to Friendlies for lunch, Thanks mom !! and it was great.. God I miss have a Friendlies in Albany county !!

I'm off the prednesone now and the Alopirinol.. so no more meds until the next round.. YEAH !!   Back to work after the weekend will be good.. Always good to keep busy..

Round 3 - Day 1

I had a 9:15am appointment which started with a CBC to check my white count.  Guess it was OK because they started the treatment about 10:15am or so.  Annie drove me and stayed for a bit but it's so boring for anyone to just sit there for a few hours.. so I sent Annie home.  My mom showed up just as the Rutuxan was going in.  The infusion was given this time without having to use a pump.. The drugs just went in one after the other infusion rates were manually set. I was done by 1:00pm..
One thing I did discover was the nurse that took care of me 2 out of 3 times is a Christian.  She actually knows the leader that Jon is with on his mission trip this week.   That is what we call an accidental intercession..
So tonight we ordered pizza of which I may have eaten one more piece than I should have... but I feel good.. a little drawn out.. but a good night sleep will help for sure.  Cannot wait to see Jon tomorrow evening.. and having him home.