Day 51: More Headaches and Fatigue

I apologize for the lack of posts the last few days. My neuropathy in my hands has increased this weekend and it's making it hard to type posts and even respond to email.

I'm still feeling very worn out and fatigued. I'm getting to the point to where I can feel when my blood counts are low and when I'm in need of a transfusion. I feel like my body needs serious reinforcements to be able to just walk around sometimes.

For some reason, the weekends come with a feeling of nervousness and anxiety. It's not anything looming or threatening on the horizon, it's just that overall feeling that I tried to describe in previous posts that returns without failure. Ativan seems to help with it, but I can't help but think it must have to something to do with getting 4 days straight of chemo and then having to deal with those effects afterwards. At times I'll get moments where my hands tremble badly and my body will shake, almost like I'm suffering a huge chill. But I'll cover up with a blanket and then get too hot. It's very strange.

All week my headaches have dramatically increased too. I'm not sure why either. But it seems like when I try to do too much around the house (which, really isn't much), the headaches just seem to overwhelm me. And sunlight seems to make them worse. Nothing is harder than watching Spring unfold outside while the temperatures rise and I'm stuck inside closing the blinds to keep out the unwelcomed light.

My sister and law Kelly is still in town and between Katie and my mother in law, they've been taking wonderful care of me. Whether it's cooking meals or just giving me a warm cloth over my forehead for a bad headache, they've been there and it's been so wonderful. I can't thank them enough for all they've done for me. Just merely having someone around is soothing.

Day 49: It's going to be a long night

This morning, my mom (Katie's mom) took Jonathon in for his chemo.  His hemoglobin counts dropped below 8 again, so they decided he needs another transfusion.  After finishing up his morning chemo, they setup an appointment at the hospital here in South Bend for his transfusion.  And unfortunately, things are running a little slow tonight.  We finally got started on the first unit of blood at 7:15 pm.  It takes roughly 2 - 3 hours per unit of blood to transfuse.  So with 2 units of blood on schedule for tonight... we'll be lucky to get out of here by 1 am.

So, we've got a long night ahead, but hopefully tomorrow Jonathon will feel a little perkier with new blood and no chemo. 

Day 48: Percocet

I'm currently blogging from cloud 9, lower east side. No really. I had killer headache this morning and into the afternoon, so I took Percocet as a stronger alternative to Tylenol and holy canoli...I'm still groggy from it. That's one strong medication! I've never taken it before. It took away my headache eventually...along with my whole afternoon! I don't think I'll be taking that again any time soon, unless I want to sleep all day. I'm not allowed to take Ibuprofin, Aleve, Advil or any of those other pain meds that contain aspirin, so Tylenol is pretty much all I can take for now. And Percocet. But I'm going to have to be pretty desperate to take that again! It's been almost 8 hours since I took the pill and I can still feel the effects from it.

Tomorrow is my last day of chemo for the week in Mishawaka. Next week will be easier with only a few days of treatment, rather than 4 in a row. So, that will be nice. On the 18th we'll be off to Chicago for more tests too. Yay.

For now, I'm hanging with the wife, watching Ghost Hunters and gearing up for tonight's episode of LOST.

Day 47: First Time for Chick-Fil-A (No Joke)

This morning's chemo started off with just trying to keep dry going from home to the clinic. Wowsers...was it raining it's ass off out there, or what? But we got there to the Mishawaka clinic and got the job done with the chemo. Today's session made me a little nauseus afterwards, but after a brief stop at Chick-Fil-a, we got home and I took my Compazine (anti-nausea med) and that seemed to help. No cookies ended up being thrown up after all. The food was good though...loved the nuggets and the waffle fries. Although I did suffer a headache this afternoon that seemed to go on for hours. It's still slightly there, tickling the top of my head and behind my eyes, but not as bad as it was.

Tomorrow we go to the South Bend Clinic for more chemo in the morning and then my sister in law Kelly is coming up from Texas to visit me! I hope that I can be a good host to her and my energy levels stay up so I can get quality time with her while she's here.

In the meantime, I'm kicking back with the wife watching Good Will Hunting.

More later.

Shop to help support the Leukemia & Lymphoma Society

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Make sure you sign up for your coupon to take advantage of the deal and help out the LLS!

Day 46: Ativan to the Rescue

I don't know what's changed, but Saturday I developed this sort of inner anxiety that just feels horrible. I'll try and describe it the best I can. I have a handle on what's coming as far as treatment, and I'm okay with it. So, it's not anything that's on the horizon that generally feels threatening to me. It feels like my heart is racing. It feels like I'm being overwhelmed with a feeling of dread. I get hot and then cold flashes, and my hands and body start to shake. I can't stop thinking about it, so that makes it worse. I've tried breathing exercises and whatnot, but no matter what I do, the feeling doesn't go away - until I discovered Ativan.

This morning I woke up feeling that way for the 2nd day in a row and decided to ask my nurses about it at my chemo session this morning. They suggested a higher dosage of Ativan. I had already been taking the drug for nausea, but it also has another positive side effect: it calms my body down. And it's so nice to feel without anxiety for the first time in a few days. The original dose my doctor had me on was .5mg every 12 hours. That's a very small dose and the nurses agreed, but understood that my doctors might not have been wanting to over-medicate me. So, I can take a higher dosage, and we'll be getting that officially cleared with my doctors probably tomorrow. This is by far my favorite drug now! Anything that helps me feel a little more normal - sign me up!

I have chemo the rest of the week through Thursday. Thankfully, there's no visit to Chicago this week though, so that's nice. Tomorrow's chemo is in Mishawaka for about half the day, maybe a little less.

More later.

Day 45: A little anxious

Jonathon asked me to make today's post.  He's feeling kind of anxious in general today.  There's nothing in particular that seems to be bothering him - just feeling pretty anxious. 

This week will be another busy one - chemo on Monday, Tuesday, Wednesday and Thursday.  Monday will be another all day kind of thing with chemo via IV in the morning, and a lumbar puncture with chemo in the afternoon.  The rest of the week is just chemo via IV.  What's really nice though is that there are NO trips to Chicago this week.  That'll be much easier on all of us. 

Yesterday, Jonathon spent the afternoon up and his mom's, and I had a nice quiet afternoon alone.  He definitely needed the change in scenery, and I needed the time to reset.  It's amazing how we all can handle this much. To think that this all just started 6 weeks ago... 

For those that are interested, we are working with Angie Wotring to coordinate a bone marrow donor registration drive.  Once we have all the details, we'll share them here.