A visit with Doctor Andy The Great & Wonderful

There is much news to report...so, if you're inclined to read the whole post, grab a cup of whatever it is you like to drink (something warm, in my case!) and settle in, 'cause it's gonna be a long one today.

Yesterday's priority was a visit to Andy, my kind and wonderful internist out in Colusa.
Colusa is about 40 minutes from me, heading west on Gridley Road/Colusa Highway, which is a 2 lane, 35 mph gorgeous drive through rice fields, orchards, marshes & wildlife preserves which crosses the Sacramento river at least twice, big flood plains and a couple other smaller tributary rivers. The rice fields are flooded after the harvest, and ducks, geese, swans and other birds flock there (pun intended) this time of year by the millions (ducks) and hundreds & tens of thousands (geese & swans). It is an absolutely awe-inspiring sight.
Well, for me it's awe-inspiring, and for my neighbors who hunt, it's like fish in a barrel!!
Yesterday, there was a flock of snow geese not more than 100 feet off the side of the road. It was foggier than hell, so I had to drive really slowly and carefully, but I couldn't resist pulling off to try and get some photos.

Um, oops. The geese were not amused.

The middle section (about a third of them) took off, making more noise than you've ever heard in your life. I got a few photos, but they just don't do it justice!!


So ANYway, I went to see Andy after talking to the physician's assistant, Bella, at the oncologist's office. I explained all the pain I was having, the swelling, and all the other symptoms so that she could have a conversation with Dr. Pisani and he could call me back. She told me what to watch for, symptom-wise, that could indicate I was having trouble with DVT and might be throwing a blood clot--as in, proceed directly to the emergency room, do not pass Go, do not collect $200 kind of symptoms. Luckily, I have had none of those.

Bella also told me that, given the types and amount of pain I'm having and the length of time since surgery, it sounded like it was time to get Andy involved to put me on a formal pain management program. Basically, it means that he, and only he, is the captain of the narcotic ship! Andy actually specializes in pain management and chronic pain syndromes, which is cosmically funny, because I discovered this guy by complete accident, looking through yellow pages on the internet. It's like the guy was custom-made for me.

So, I called Andy, he had me come in right away, and we started deciphering all of my mess. Andy's diagnosis is that I do have lymphedema, but it's not actually all that bad. The swelling is minor, but waxes and wanes through the day, which is a good sign. That means it's still variable based on activity levels and stuff, not heading toward permanent disfigurement.

[Trivia for the day: I never knew that elephantiasis, that disease teenage boys like to make jokes about, is actually the most advanced, worst form of lymphedema.]

However, Andy also figured out that the lymphedema is not the cause of the pain. The pain is actually mondo neuropathy. Neuropathy translates to nerve pain, literally, so the term sounds like kind of a catch-all, but it's actually very specific in my case. Most diabetics have trouble with peripheral neuropathy (meaning any nerves which are not in the brain or spinal cord proper), especially with their feet. I am having some of that, but my main problem is in that upper thigh, hip, pubic and genital region.

Andy says that my problem is severe neuropathy of the ilioinguinal nerve.
[Wiki says: The ilioinguinal nerve, smaller than the iliohypogastric nerve, arises with it from the first lumbar nerve.
In the female ("anterior labial nerve"): to the skin covering the mons pubis and labium majus. ]

So, this booger of a nerve starts in the lumbar vertebrae (L1 specifically), and travels down into that upper part of the thigh, across the pubic mound, and finally ends in the labia. These would be, of course, the major areas where I have excruciating pain when I say, lean against the counter to brush my teeth or something. It also has parts that affect the inside of the vaginal canal and other fun stuff.

Now, the big pile of lymph nodes that I had removed in the surgery were the inguinal nodes located in the pelvic area. Ever since day one after surgery, I've had weird nerve issues in that upper part of my thigh, including totally "dead" patches, to where I was joking that I should hurry up and go get a tattoo there while I couldn't feel anything.

See the "Ah Ha!" moment coming here?

Andy says it is not even slightly uncommon for the ilioinguinal nerve to get nicked during this surgery, and suspects that is what happened. So now, the nerve is pissed as hell, and the lymphedema is making it even madder, causing me insane amounts of pain.

The good news is, knowing what it is allows us to attack it and treat it aggressively so that I can feel better. The bad news is that it's not going away any time soon. The nerve damage could heal itself. Or it could not. There's no way to know. Neuropathy like this is (yup, you guessed it) completely normal after surgery.

Lymphedema is not curable at all. Once you get it, the best you can do is try to first reduce the acute problem with gentle movement and exercise, lymphatic drainage massage, compression stockings and even diet. After it's at a normal, manageable level, it becomes more of an annoyance than anything horrible. And, apparently, lymphedema doesn't cause pain, so that's the neuropathy at work.

Now, did Dr. Pisani finally call while I was out of the house for the first time in a full week? Of COURSE, Dr. Pisani called while I was out. Duh.

Luckily, I'd left Lloyd a cheat-sheet with the things I was needing to talk to Pisani about. Dr. Pisani had been operating under the impression that someone had told me how to get started on radiation already. Nope! He also mentioned that while it sounded like I had some lymphedema, lymphedema doesn't cause pain, so that couldn't be the acute problem, and was glad that I was seeing Andy for figuring out the pain stuff. I hadn't written down anything about the possibility of chemo on the list I left for Lloyd, so of course he didn't ask, so I still don't know about that.

So where does this leave us?
With the information from Pisani, Andy and my internet research, here's what I know at this point, in no particular order.

• Radiation will be at Feather River Hospital's cancer center, up in Paradise. That's about 45 minutes from us, up at the base of the mountains, just below the snow line. Paradise and the hospital luckily didn't burn down this summer, but it was close. They have a gorgeous cancer center under the pine trees with giant aquariums and a meditation garden with a stream. I still don't know when I start or for how long I have to go, but I do know that I shouldn't need anyone to drive me, or be massively incapacitated afterwards. Supposedly, you don't feel, see or hear anything and it's just like getting an x-ray. After successive treatments, you can start to feel icky afterwards, but that is mainly in the form of fatigue and maybe nausea and general *bleh*. I am to call them on Monday and get things sorted out out as to when I start and how many treatments and all that. Details will, of course, follow here as soon as I have something to report.
• Formal pain management has begun. Andy is a saint. We discussed all of my specific pains in great detail, in a very long conversation that involved things like kappa receptors, gaba-agonists, and anxiolytic medicines. Yeah...I had to look all of those things up too, but it's totally unimportant right now, so don't worry about it. Basically, we made a new drug cocktail. Andy has upped my Zoloft, which raises my serotonin levels and relieves most of my anxiety. He's also given me a small supply of very low-dose Xanax for those acute anxiety attacks that I still get once in a while. I am now taking a new med, neurontin at night, which is a type of painkiller that I believe is aimed specifically at nerves and neuropathy. That's a long acting one, so I only take it once a day at bedtime when I want to be sleepy anyway. During the day, I am taking a low dose of a very strong opioid which seems to actually attack the pain very, very effectively. I can safely increase the dose as much as 3X if I'm not getting enough relief. As a gastric bypass patient, other delivery methods, such as liquids and patches are much more effective in their absorption rates than swallowing pills, but of course none of those routes are available to me. Andy would give them to me, sure, but I'm so allergic to adhesive that when I was trying to quit smoking, my torso became a checkerboard of puffed-up red itchy, hot, scratchy, painful square welts. No patches! And the liquids make me gag. Pills it is!
• Another major concern is my immune system. It's never been good, and that's putting it mildly, and it's pretty much useless. This is not a good thing, because radiation will weaken it even more,and god help me if I had to have chemo, so Andy wants me to put immunity-boosting at the top of my already crowded to-do list. He's got me on a big 'ol pile of supplements, including B complex, E, fish oil, l-carnatine, glucosamine, and of course masses of C. Antioxidents are a major, major deal right now, to try and build me up a little bit before my system takes another hit.
• I am exceptionally anemic, again/still/forever. I try, I really do! Yes, I forget to take my iron at least half the time, but I have to alternate my iron pills with stool softeners or I will never poop. Ever.
• My diabetes is not controlled anywhere near tightly enough right now, and I need to take steps to rectify that, immediately. Like not sitting here and eating homemade toffee while typing. Yeahhhhh........ That's not something I usually do--I'm a pretty good eater, but I need to get back on track. My main problem is that a very large part of the time I don't want to eat at all, and then my insulin levels fluctuate wildly and I'm suddenly forced to eat to get my sugar level up FAST, so I grab whatever sugary ick is closest and basically perpetuate the problem.
• And then there's my oral health...or, shall we say, lack therof. Many of you know about the abscess and cracking problems I've had over the last few years. Now, I'm having a ton of other problems, especially with my gums and enamel, and Andy says that it's all connected. The cancer, the loss of lymph nodes, the meds I'm on--they all contribute to gum disease and xerostomia, which is a medical case of dry mouth. By that I mean not just "oh, my mouth is dry," but an actual decrease in saliva production and decrease in my mouth's ability to fight off the bacteria that cause major gum problems, which makes a nice tidy feedback loop, since oral health problems lead to a decrease in overall health. Vicious circle anyone? Getting my teeth fixed (the ones not already cracked and falling out of my head) is unfortunately low on our financial priority list because it's going to take so damned much money to fix them. However, in an attempt to do something about them, Andy steered me toward a sort of fake-spit spray for my mouth that helps kill the bacteria, and I found matching toothpaste which is supposed to do something. Other stuff. (Sorry, I've been working on this since this morning and I'm starting to forget things!!) Oh, and I got a new electric toothbrush.
• Anyone ready for some good news? My HDL cholesterol is 84 and my LDL is 92, and my coronary risk factor score is 2.3, which I've been told is excellent. Yay for my cholesterol!
• And finally, we must address what's inside my head. Not the physical stuff inside my head. That's all fine, I hope. The mental-emotional stuff is harsh. I am still the queen of guilt. I get anxiety attacks sometimes still. Not as bad as the ones I had before I even knew what stage my cancer was at, but attacks nonetheless. Perhaps worst of all, I've lost that yogic thinking I spent so long cultivating. Before and right after surgery I was great with using my guided-imagery visualization exercises, yoga asanas (poses), and pranayama (breathing) practice to work on my healing process. Now..........I just can't get myself into that mind-space and the effect it's having on my physical well-being and healing is pronounced. I need to start going to yoga classes on a regular basis, immediately for both the physical exercise (which would also be quite helpful) and the mental clarity and concentration it gives me. The guilt-based depression makes me want to just lay in bed all day and be sick and tired of being sick and tired. Let's not even think what would happen if I have to have chemo and haven't gotten myself back there yet. Andy and I talked a lot about that, and he offered some suggestions and opinions--you can probably guess what those were. Quit being guilty about the time, money and care everyone has to spend on me, quit pushing myself so hard to do things that I shouldn't be pushing myself to do, put myself and my healing first at a majority of times. I have to allow myself to realize that my actual "recovery" process hasn't even started yet. Wow...wasn't *that* a revelation!! Here I am, mentally berating myself for not doing well enough, not healing fast enough, having complications and generally being a pain in the ass, and Andy made me realize that the recovery portion of this long, strange trip doesn't start for real until after all the adjuvent therapies have finished, because they leave collateral damage in their wakes.

Monday, I call the cancer center, and I call Bella to find out if there really is a chance of chemo, and if I'm going to have chemo, I'm dying my hair red and green stripes for Christmas. Very red and green.

I think I've covered all the bases...there were a lot of them to cover. I'm exhausted, no shock there, but I've finally finished this post so that everyone knows what is going on, and my house is painted and it is gorgeous. I'll be taking photos after we get all the furniture back in place.

Now it's time to head off to bed, if we decide to sleep in the bed. We'd have to put sheets and bedding on it, which we'll have to take off again in the morning to move it back into place. We might just play camp-out on the couch. Time to try and relax myself. No small task...I feel like I forgot things, but I have no idea what they are, so I'll post more later if I think of something.

Thanks to everyone for caring enough to want to read this. I really do appreciate all of you.