Day -5

Today was my first day of chemotherapy.  In all honesty I really expected it to be similar to what I experienced with the mobilisation and for the most part I was right, but there were a few differences.

First, there were a lot more drugs today.  The chemo was supposed to start at 9.00am, which was kind of annoying because I wanted to get my morning routine out of the way before I started, but there were a few snags along the way.  There were a number of premeds and they wanted to start them from about 8.00, the same time I had ordered my breakfast.

I really wanted to have my shower before they re-hooked my PICC line to the drugs and fluid which was started at 7.00am and staggered through until 9.00.  I was under the impression that these would start about 8.45, but I guess that was my bad as I really should have asked for more clarity and it was no biggy, but I did want to get my morning shower in before I was hooked up  to the IV just for the sake of convenience.  The other thing that threw the proverbial spanner in the works was that my breakfast was twenty minutes late.  It was supposed to come at 8.00am, so by the time it finished it was late.  I had to run through the shower to make it back to bed treatment.

Just so you know, at 7.00am they started on the fluids, which will be administered for the next four days until I am finally done with the chemo.  They are running it at 150mls per hour.  That is 3.6 litres of fluid a day, so as well as the standard fluids I drink ordinarily, that it a lot of fluid.  At the same time (7.00am) I also had a dose of dexamethasone, another steroid and mesna.  After all the hoopla the pharmacy people here agreed with Dr Goldfarb and concurred that the mesna posed no threat to my cystinuria.  Just before 9.00am I rushed out of the shower just in time to get the last couple of premed drugs, zofran for nausea and ativan, a light sedative, which also made me feel a little drowsy.

After about half an hour it hit me again.  The dreaded wasabi nose.  My nose started twitching, my sinuses started burning and my eyes started watering.  So they gave me some benadryl and slowed the rate which the infusion which seemed to do the job.  Tomorrow I thing we will engage these tactics prophylactically.

After the cytoxan had run through it was back to the rabbit ATG for another ten hour infusion.  It sounds long, but with a permanent infusion of fluids it really doesn't matter.  I am here anyway whether I have 100 different things being pumped into me or just one.  With the ATG came more premeds.  Another 1000mgs of solumedrol, more benadryl and tylenol.

It was a long day.  I did have some side effects, mainly the sleep highs and lows due to the Benadryl, ativan and steroids.  But there was too some nausea, but I had that one dealt with very quickly with some more zofran.  I have had other problems too.  The lasix that they give me sends my kidneys into high gear so I'm in a constant state of urination and that leads to pain.  With all the many kidney surgeries that I have had I have a great deal of scar tissue inside the good old waste filters.  These coupled together are quite painful so I have had to take some Norco too.

I have to say that right now I probably feel slightly worse than I did when I had the mobilisation chemotherapy, but that is probably because of the ATG and Rituxan I have already taken.  Oh well, one day down and three to go.  And I always said I am not doing this because it is easy, I am doing it because it is worth it.  I also couldn't finish my dinner tonight.  Alas, the chocolate brownies I ordered for dessert had to be returned to the kitchen uneaten.  I hope the chef was not offended.

On a lighter note I have had a couple of extra visitors over the last two days.  Aside from my mother who's presence has been sorely welcome, yesterday Abby, the sister of the friend I stayed with in DC came to visit me.  It is amazing what the presence of a friend can make.  I also have to say that Abby has been really amazing since I have been in Chicago, making sure that I have had people I have felt welcome.  In fact I have to sat that everyone in her family and her friends that I have met have been really great and I thank them all for their hospitality.

THe other visitor I had today was Bob Boen.  Bob is a fellow CIDPer and another loverly person, I just don't know whether to call him Bob or Robert?  WHen I met him for the very first time he was wearing a shirt that said "My friends call me Bob, but you can call me Robert."  The question is am I his friend and should I call him Bob?  And is the comment related to others?  Or does every bodies friend status get demoted when in the presence of the shirt?  Maybe I should call him Rob or Bobert;)

Now I have had my little laugh I will go on to say Bob conveys to me the kind of guy that inspires me.  He always has a smile on his face, is genuinely interested in talking to anyone and refuses to let his disease beat him.  He also gave me my own CIDP jumper that is really kind of him.  I will take some pictures of it when I can get the opportunity to.

Well, that is about it for today.  If my post today has seemed a little disjointed I apologise.  I have 1001 different drugs swimming around in my system and I'm not quite feeling myself.  Until next time, stay well:)