Six Flags Over IKEA

This trip I am taking through Chemoworld has been fascinating and horrifying and painful and exhausting. It's not a trip I recommend to anyone, but if, like me, you have to take the trip, there are interesting twists and turns.

In some ways, it reminds me of running back into the building after recess in elementary school. For a while, you're in this great big space, but then everyone has to go through the same door. So you go from feeling like you have personal space to feeling like everyone is on top of you.

So there are times during this journey when I have had to get pushed through the correct door, be in the queue that I had no interest in standing in, and try to just get through. It's like being in a theme park, where some of the rides are mandatory.

Anyone who knows me knows that I hate theme parks and roller coasters and rides. But here ojn this trip, there are times when I have to take them - it is the only way through. It reminds me a bit of IKEA, another place I can't stand. I have been to IKEA exactly twice in my life, and I plan to never go again. Park of what I hate about it is the way everyone is herded through like sheep. You have to go down this aisle, then up this one, than down that one, etc. Sometimes you can move a display and find a shortcut, but mostly, you are stuck in line.  

This is what the infusion and the subsequent days feel like.

Getting the drugs infused is really no big deal - one needle stick, and the drugs are pumped into me. But the after effects can be wild.

It seems to me that chemo likes to target exactly what will make an individual lose their mind. Here is an example: with my vision loss, one of the things that I find most intolerable is when my ears get clogged. Being blind is something I have gotten used to over the years, but being deaf-blind is not something I really want to ever get used to. 

When I have had head colds and sinus infections, sometimes my Eustachian tubes get blocked. Most people think of this as an irritation, but to me, it brings on all kinds of issues. I remember walking home from work one day when I was all clogged up, and suddenly someone touched my shoulder. Evidently, he had called out to me, but I hadn't heard him, and I jumped about three feet in the air. 

My doctors have had to learn that it wasn't a sign of mental illness that I couldn't deal with this, but it was a real issue for me, one that had the possibility of bringing on panic attacks. Blocked Eustachian tubes could reduce me to a quivering mess.

So, of course, with Chemo Number Two, what did I get? In addition to the weird exhaustion and GI issues, difficulty eating, etc etc, I also couldn't hear a damn thing. And it took a while to get an answer as to what to do - ordinarily, I could just take Benadryl, but I didn't know if there would be issues with the Benadryl reacting with the chemo drugs. 

Kaiser has been great, but it s a busy place, and it took several hours before I could get an answer. My doctor gave me a simple treatment, a mouth rinse called "Miracle Mouthwash", and the problem went away.

But this was just one. It felt that the chemo was deliberately figuring out "What would make Dmitri drop his beads?" and then going there.  

Now it's Thursday, fourth day out from the chemo, and I have taken both the infusion and the oral chemo. I'm done until the 22nd, when I start Chemo 3.I'm already feeling significantly better, and thinking about doing some things like normal people do - like taking a shower before its 7 PM, stuff like that. I'm eating relatively well, and everything is improved.

But I know it's waiting for me. Hopefully, the chemo is doing good things for me, but it also likes to screw with me. I'm still learning how to balance both pieces.

I may not be doing the best job. Tom has, unfortunately, borne the brunt of most of this. He has been amazing, getting what I need, going to the pharmacy, rubbing my back, and putting up with my anger and sadness. I'm not proud of the fact that I have been angry, lost my temper and lashed out, and Tom is the only one here. But there are times when I have to yell, have to get snarky and relieve some of the inner pressure. 

Luckily for me, I married early and well. Tom and I have 42 years of experience dealing with each other's quirks, and he knows me better than anyone. He is eternally patient with me, and when I ask him how he is feeling, he mostly tells me he just feels sad that I have to go through this. I have tried to explain that I'm sad HE has to go through it, but he tends to pooh-pooh comments like that.

So overall, how was Chemo Two? It sucked. It was better than the first chemo, but I'm still getting my system used to the onslaught. 

I know there are more rides coming, more trips through the endless Swedish maze that I have go through. Mostly, with medical issues, I have learned to just let go, and let the doctors and nurses do to my body what they will. With the side effects, it's just me and the problem, duking it out. I have a great support team to assist me. It still isn't easy.

I continue to be thankful for all the support I am getting from my community. Not a single day has gone by without letters, cards, postcards, packages from those I love. I've fallen a little behind on my bread and butter notes, because the volume has been high. But it is so wonderful, getting these letters. Handwriting letters has it all over email (and blogs, for that matter). I will get back to everyone who has written, and it thrills me to see how many people have said, "This is kind of fun, I'm going to buy my own stationery."  I hope all my correspondents are finding the pleasure that I have found, that slowing down and taking time to write and to form each letter is actually a wonderful way to relax and rest. 

There are more travels ahead, so more posts to come.