Wednesday, 31 July 2013

Day +9

I woke with anticipation, waiting on the blood results that had been drawn at 2:30am. The white blood cell count should start spiking today...

Andrea, my nurse during the night, came in at 7:30am, but brought disappointing news. My white blood cell count was still <0.1, my platelets count had fallen again, and now my haemoglobin level had fallen below the safe threshold.

My nurse for the day was Becky, and she was charged with the task of giving me platelets and blood in order to raise my 'levels'. 

And so my morning was spent having the platelets and blood transfusion, helped along with pre-meds (which sedated me). I was done by about lunchtime, so Vineetha picked up a Butter Chicken masala box for me from the cafeteria on the 2nd floor.

After showering, I decided the white blood cells needed to be shaken out, and I prepared myself for a walk around the unit. 

I intended to do one round, but as each circuit of the unit neared its end I pushed myself to do another. I eventually completed 5 circuits of the unit (representing 0.35 of a mile). It's not far, but for me it was a morale victory! 

The room at Fairfield Inn had become available today, so I persuaded Vineetha to stay there for the night. After two and a half weeks of sleeping on a bench and using a common shower and toilet, she deserved some comfortable surroundings. 

The night was lonely without her in the room, so I watched a movie and tried to get some sleep before the 2:30am blood draw ... 

ML Hi Ben, I've been thinking about you a lot. I know it's easier said than done, but don't get disheartened , everyone's engraftment is different but I'm sure you are very close. The night before my white cells started to move I had a strong ache in my lower back and hips and knew something was happening. Then when they moved it was only from <0.1 to 0.1 . The platelet and blood transfusions will keep you safe and strong until your bone marrow starts releasing all those wonderful healthy new cells. Maybe it's just taking a day or two longer to ensure that when they do move to your peripheral blood they are absolutely perfect !

1 August at 15:24

BTR Thanks Monique. My counts started moving this morning and I was at 0.3. They will give me an early Neupogen shot, and another blood draw after lunch. If I hit 0.8, I can be discharged this evening .. woohoo!!
1 August at 15:35

DC Go white blood cells!
1 August at 15:45

ML Great News ! It's only up from here! How long will you stay in Chicago ? We're still here.
1 August at 15:46

WM Well done Ben one little step at a time and your mrs R does it coz she luvs the very bones of you...:))X
1 August at 15:49

SK take care ben! between your positive attitude and vineetha chechi's TLC you will be out of there in no time!
1 August at 15:54

SS yup one step at a time....sometimes it may take a lil longer than expected but never ever lose hope....praying for you and Vineetha .....everything will be fine.....
1 August at 16:35

AD'S Wonderful news that your count is going up. Praying and rooting for you.
1 August at 20:08

DB This is your mountain - think positive and you WILL conquer it !
1 August at 23:02

SA oh Ben.... you've got this one...u ain't giving up without a've come a long way....its all gonna be fabulous...have faith! 
2 August at 00:44

Tuesday, 30 July 2013

Day +8

Today was uneventful. My platelets had remained steady although the haemoglobin count was beginning to fall. I may need some blood tomorrow.

Monday, 29 July 2013

Day +7

I had been woken up for my usual 2:30am blood draw, check on vital signs and a half-hour IV antibiotic feed. The routine after this would have been to sleep until 7:30am and then get ready for the day.

But today I was woken up again by two nurses at 6:00am, and I knew something was wrong. Apparently, my platelet count had fallen below the safe threshold and I had 'spiked' a fever of 100.3. Anything over 100.4 and it's ER time ..

So they hooked me up to my IV pole again to feed me the platelets and followed this with an additional dose of IV antibiotics.

Within the hour my fever had stopped, but they needed to do blood cultures from the PICC line and directly from my vein (and I began to feel like the pin cushion again).

Another draw of blood was taken and my platelets had risen from 9 to 33 (A healthy person person would have >300), but the doctors were happy.

The rest of the day was quiet, until my buddy Bryan and his wife Ann [Bryan-Ann Hinkle ] visited. We chatted and laughed, and that lifted me for the rest of the day.

I reflected on the mini-drama of this morning, and what impresses me most about Dr Burt and his team is that there are NEVER any dramas. If there is a 'perceived' problem, they assess the situation and deal with it. If plan A doesn't work, there's always a plan B.

So I think that moving on, I have to be calm and collected in ALL situations and have a plan to deal with whatever life has to throw at me ... just like Dr Burt and his team.

My PCT for the evening was Georgia. She liked the hat, and said I looked so good in it that she wanted to take me home.

Although all the nurses and PCT's were absolutely brilliant, Georgia's larger than life personality really made her stand out.

  • ML Hi Ben, how right you are . With Burt team there are no problems only solutions. I had two platelet transfusions over my time in hospital. Last Thursday , when I was discharged my platelets were around 70.
    Yesterday I had my bloods drawn and today Amy 
    ...See More
    31 July at 00:09

Sunday, 28 July 2013

Day +6

Last night was quite difficult as I had developed severe pain in my hands and lower arms

I usually ride out the pain, but this time it was too intense so I called the nurse for Tylenol. This kicked in after half an hour and I slept well

I woke with more energy, and started the hotel booking process for my anticipated discharge by the end of the week

On another note, my weight had dramatically increased last week due to the IV steroid pre-meds. I topped out at 61kg.

Vineetha has a paranoia of being heavier than me, and the 61kg gave her adequate 'headroom' to eat whatever she liked. So it was "Maybe I'll have a steak, or a burger or perhaps some dessert"

Unfortunately for her, my weight has dropped this week as fast as it was put on.

The next thing I know, she has visited The Protein Bar and bought a pot of chilli for me (not a regular size, but an all American sized one). She walks into the room and says "EAT!!!"

I managed about two-thirds of it, so she had to finish the rest.

Next, she bought two Kit Kats, and again said "EAT!"

I had one immediately, and thought I'd have the other one after my nap.

But when I woke up, she confessed she had eaten it 

My wife's cunning plan had backfired, and now she is terrified of seeing a weighing scale 


So after having stoked the fire of my wife's weight paranoia, I had a restful night's sleep ....

  • RV Lol. Poor Vineetha Rajan
    30 July at 04:37

  • MRB Nice to know both of you are seeing it with humour.
    30 July at 14:56
  • MRB We have to give a standing ovation for the strong woman standing beside you, always smiling, giving you positive strength. Our prayers to God to give her it to keep it up.
    30 July at 17:47
  • KJ It's great to read you so positive all the way , positive minds make quick recovery ,so mon see you fast in flying colours .... Great to read you , it's high time you started to write .... Love you both
    30 July at 20:11
  • SA a bit of extra weight won't hurt... more to grab onto Ben, when those hands of yours are back to normal!  (fun! fun! fun! hahaha)....Vineetha, chill out.... u've got the rest of ur life to watch ur a little!
    31 July at 01:35

Saturday, 27 July 2013

Day +5

Sorry for the lack of updates, but my energy levels have really been bouncing along the bottom.

This was as expected, and Dr Burt had no concerns since my 'numbers' were exactly where they should be.

As I am neutropenic, my vital signs continue to be monitored every 4 hours. This along with the 8 hourly IV antibiotics means that sleep is hard to come by.

Connie was my nurse for the evening.

On another note, my buddy Bryan Hinkle was discharged on Thursday. He has made a great recovery, but I miss having a friend on the other side of the concrete wall

As usual, my Rock [Vineetha Rajan] continues to be resilient to everything thrown at her. Each time I turn over to look at her, she is smiling. Soon she will be able to sleep in a proper bed and get a good night's rest.

My kids on the other hand have fallen in love with USA, so prising them out of the country may be a problem ...

  • Seen by 40
  • EBG Checking up on you everyday and I think you have been amazingly strong and brave. Am praying for you and in my thoughts. Xx
    27 July at 16:49
  • SA Go Ben!!!! So looking forward to seeing you, Vineetha and the girls again....always praying for your healthy recovery...and Vineetha's recovery from worry and stress as well!  xxxx
    27 July at 17:00
  • BAH We miss you too. Your attitude has been amazing and that is what will carry you through. Stay strong, stay positive. -Bryan
    27 July at 17:11
  • SA Ben, You are doing incredibly well and hats off to you vineetha for being so strong and wonderful.. Not long now and you too will be discharged soon with a positive outcome.. can't wait for all of you to come back home soon xxx
    28 July at 13:45

Friday, 26 July 2013

Day +4

Today was very uneventful from an SCT viewpoint. It was one of those 'boring days' that Amy Morgan was hoping for, which meant that things were going to plan.

My nurse for the day was Kristin

I decided that some exercise would be good, and I dressed up in my blue overall to walk the corridors. As I left the room, I met with Bryan, Monique and Doug who were also undergoing SCT. It was good to meet other people going through the same experience. We were later joined by Amy Morgan and Kelly Voth.

The highlight of my day was a visit from my buddy Ramgopal Vallath who was on his annual follow-up. 

RamG is 2 years post SCT, and meeting him earlier this year on Facebook and again in person when he visited London was a Eureka moment for me. The internet is a powerful tool! 

I had met with Dr Burt in the morning, and it turns out that RamG and Dr Burt had indulged in a glass or more of wine the night before. Dr Burt informed me that my visitor might be a bit late as Dr Burt had left RamG in a drunken stupor. 

Perhaps Dr Burt is extending his outcome measures to cover the post-SCT effect of alcohol.

  • Seen by 37
  • MGK I heard the story of you traced him down by chance from Achu Aunty. Everything works out eventually.
    27 July at 19:11
  • RV Drunken stupor!!!
    27 July at 23:51

Monday, 22 July 2013

Day 0

I didn't get much sleep last night partly due to the excitement of my upcoming stem cell transplant.

I decided to get out of bed at 7am, and had a long hot shower so that I would be 'squeaky clean' for my brand new stem cells.

Breakfast was ordered, but I was feeling a bit nauseous so took some medication to counteract this is.

Kaitlyn, my nurse for the day, came in just before 8am to introduce herself and also to give me pre-medication before the transplant.

Just before 10am, Jeannie (the chaplain for the oncology department) visited and asked if I would like my stem cells to be blessed, so I gratefully accepted her offer.

By 10am the transplant team had arrived, headed by Dr Burt.

Ron (the stem cell technician) was asked to defrost my cryogenically frozen stem cells.

... and shortly after this, Kaitlyn started the infusion.

The infusion took about 15 minutes, during which time I felt fairly comfortable although as usual the Benadryl took effect and I soon became a little lightheaded. It's not an unpleasant feeling, but it was slightly annoying when I wanted to be awake to absorb all the activity going on around me.

Everything was going like clockwork and my vital signs were monitored every 10 minutes for the next hour. The hour was up, and everything was deemed a success. Vineetha had been by my side the whole time, and I gave her a big hug. She has been a star, and I don't know how I would have coped without her.

Things were going well, and after getting over the morning's drowsiness I had some lunch.

So now it's a waiting game and hopefully 'a bunch of boring days' to follow.

As today was deemed to be 'new' birthday, the 'team' gave me a card signed by all of them.

I was also wished a Happy Birthday by my neighbour (from the next room) and Facebook buddy, Bryan Hinkle.

  • Seen by 44
  • SB Wow.. That's great. Fingers crossed xx
    22 July at 21:02
  • RV Hey Kaitlyn did mine too. How cool is that.
    22 July at 21:03
  • BAH Great pics! Hope today is going well for you.
    22 July at 21:22
  • DB Hope it all goes well for you !
    22 July at 23:16
  • EBG Great news . Xxx
    23 July at 03:05
  • TP Fantastic News!!! hope everything is going well, lots of love n prayers 
    23 July at 03:13
  • TJ Great!!! Hope it goes well!!! 
    23 July at 03:15
  • SK glad to hear! get well soon!
    23 July at 04:28