DAY 23 – MAN DID THAT SUCK!!

I’m skipping over day 22 because nothing really happened. We didn’t get back on Saturday until about 11 pm so Sunday was just hanging out at the hospital, watching movies. Well TK got a care package from her hubby that she’d been waiting over 10 days for so she was thrilled. I was pretty happy too since much of the package was spices and other food items to make our cooking options much better. We decided to make a Japanese curry for dinner, I didn’t know the Japanese did curry but it was quite good! Before cooking it up she said she had to go down to the Chinese market for a few veggies and of course she doesn’t mind going by herself. Over an hour had gone by and the last time she went to the market she was back in about 20 minutes. It was now beginning to get dark and I’m not normally one to worry but I guess my paternal instincts were kicking in. I was up at my window looking down at the path she’d be walking back on giving myself a 10 minute cushion before I’d have to go find someone to search for her! Right at about that time she walked in, apparently she wanted a pomegranate and was walking all through the street markets to find one. I’ll have Bob give her a good spanking for that when she gets home!
Now it’s Monday and I’m scheduled for my fifth and final stem cell transplant. Everything starts off as usual with the nurse starting my IV at about 10:00 and by 11:00 I’m being wheeled into the transplantation room. Nothing different than any of my other lumbar punctures and I’m out in 20 minutes and dreading the next 6 hours. I got some sleep in the first hour and by the end of the second hour my lower back was starting to ache so I popped a couple of extra strength Tylenol. Coincidentally I’d had a conversation with TK the day before about how extra strength always did the job for me but nothing relieved her pain without codeine. At about the four hour mark I was taking a couple of her codeine pills as my discomfort was increasing. Finally the six hour mark hit and I was able to get out of bed and walk around a little where some people were gathering around the common area. After standing around for 10 or 15 minutes my lower back wasn’t feeling much better and I did notice some pain in my upper legs.
My neighbour Drew who suffers with ALS had a terrible night two nights earlier because of an adverse reaction to his lumbar puncture where he experienced extreme pain in his legs as if they were on fire. We could hear the commotion for quite some time and apparently it took a lot of drugs to finally calm him. This occurred two days after his treatment and apparently similar reactions have occurred with others but this was the first I’d heard of it. They do caution of headaches after treatment and I was starting to get one and wasn’t feeling as well as I normally would’ve expected so I explained this to Luca the head interpreter so he could explain to the doctor. The doctor offered ibuprofen but I had already taken Tylenol with codeine so that wasn’t going to cut it. He said he could give me something stronger through intravenous and we agreed that I would see how things went during the next half hour. Well before that half hour was up I was back in my room waiting for this IV.
Things were beginning to intensify for me quite rapidly now as I wasn’t getting relief once the IV had finished and my head was killing me! Next they gave an injection through the IV tube inserted into the vein of my left hand, now I understand why they require the IV tube remain inserted until the next day. This wasn’t making a difference either, it might not have been so bad if it were just my head in extreme pain but it was coming from my lower back and my legs too! I’ve always considered myself a tough guy in terms of withstanding pain and punishment, I can’t recall crying tears from physical pain since I was a young child. Emotional pain is a different story; I’ve cried rivers over some of the emotional suffering I’ve endured but never from physical suffering until now! Not like I was balling my eyes out or anything but tears were flowing.
Next they asked if I’d like to be knocked out and you bet I did! Again through the IV tube in my hand the nurse began injecting valium which is also very painful going in. She had to inject it slowly while gently massaging my vein as it went in. Towards the end of the syringe I was feeling groggy but kept opening my eyes, not to fight being put to sleep but I just couldn’t be knocked out the pain was so intense. I don’t even know how many other drugs they gave me and TK wasn’t there the whole time but she said she lost count. Sometime before midnight I took an oral dose of something which finally put me to sleep but not for long. I woke up again sometime before 1:30 am and both TK and I thought it would’ve been around 4 or 5 am! Yet again I took another oral dose of a different drug and finally slept through the night until approximately 7:30 am. What a HELLISH NIGHT!
When I woke up my head ache, back ache and leg aches were still with me but not nearly as severe. I buzzed the nurse to ask about my next medication and she said the doctor would be in to see me at 8. Dr. Jack did arrive at 8 along with Dr. Mike the head doctor and Doctor Tony who was the doctor on duty the previous night. They explained to me that this happens due to a change in the pressure of the fluid in my spinal canal, discussed the medications that I’d be taking and told me to tell them right away if I experienced anything new or increased pain.
So now I’m into day 24, feeling pretty lousy and spending another day lying in my bed. They monitored me pretty closely as they always do and I did improve throughout the day. My head and leg aches diminished to nothing by the end of the day but my lower back remained sore. My concern was what was happening to my spine. I couldn’t bend my head forward or bend my torso forward without excruciating results and when I moved in a way that aggravated my spine a resounding bark of agony was the result. The situation did improve throughout the day but never resolved itself and I remained on medications, both oral and intravenous. I didn’t really get out of my room all day and couldn’t do much because sitting for too long in one spot such as typing on my computer was difficult. I was feeling more confident about recovery as time went by; it was just going by slow! At one point during the night I was in the bathroom and suddenly sneezed, you know how they can sneak up on you unexpectedly which produced a loud yelp that I think really startled the night shift nurse! My room is located directly across from the nurses’ station but she was in my room within 20 seconds! Ever since that sneeze I’ve been fortunate enough to hold off several others by pinching my nose right before I feel the urge!
Day 25 started out pretty good other than a lousy sleep the night before. Everything was feeling much better other than my lower back pain, right at my tailbone now. I had electric wave therapy at 8:20 am as usual and was told that my physio would be cancelled for the day. I was up and about and walking around the halls talking with people I hadn’t really seen in a few days. I was looking forward to taking a shower for the first time in three days and finally getting the intravenous tube removed from my hand. I had a bag of glucose with vitamin B and C infused earlier and was finally going to get the tube removed, thankfully because after three days it was sore.
I did get to shower and shave and was feeling somewhat normal again. A few other patients were leaving the hospital this afternoon for the long awaited return home. Oh how we all look forward to that day! We were taking pictures, saying our good byes and making sure everyone had each other’s email, we’ve definitely met some interesting people here! That was pretty much my day, I can only hope and pray that tomorrow will be better again. W-Five was supposed to send their film crew today but we emailed them to say that I wouldn’t be able to do it and are now waiting to see when we can reschedule it. I don’t have too many more days here so hopefully it works out. That’s all for now.
LC