Chasing the Doctorate of Marty

My post graduate study continues in my pursuit of the elusive Doctor of Marty degree. I have been studying, doing my clinicals and taking both written and oral exams for a long time now and apparently I still haven’t completed my class work because Marty has decided to add another course.

We have now expanded our lexicon to include words like vertebroplasty, Forteo, bisphosphonates, bone density, T score and of course osteoporosis. For Marty, bone loss is not that surprising given the amount of steroids she has taken, her hysterectomy and thyroid issues, not to mention the little matter of the strokes. The fact she broke her arm a year ago without falling or that she has developed compression fractures in the lumbar part of her spine all point to significant bone degradation, thus we now embark on a new journey of which I know little.

About two months ago Marty started to complain about lower back pain when we moved her or she moved from lying to sitting. She would complain loudly, “Oh, oh, oh, oh,” a sign of real pain in that she does not complain over minor aches. Given the location of the pain and her past bouts with urinary tract infections we immediately went into infection mode. Testing proved there was no infection. Yeah.

The next thought was simple muscle strain. When we move Marty anywhere there is a certain amount of twisting and turning which could easily strain the muscles of the lower back. We did drugs, ice, heat, and rest and after about two weeks we still got, “Oh, oh, oh, oh” when we moved her and her blood pressure was continually elevated, another sign of real pain. A trip to Great and Wise was next.

He immediately brought up the idea of compression fractures but sounded reasonably confident some relief could be provided by a procedure called vertebroplasty. One x-ray, one CAT scan later we were checking into good ol' Providence for a minor procedure of having biopsy needles inserted into Marty’s back so they could inject glue into the compression fracture in the L2 vertebrae of her spine. Think filling a crushed drink can with goo. Oh yeah, a minor procedure is when they do it to someone else, if you do it to me it’s a big damn deal.

Marty had three compression fractures in the lumbar portion of her spine. Those breaks along with the broken arm she suffered a year ago indicate significant bone deterioration. All of her doctors have directed us to an injectable drug call Forteo. Being the internet maven that I am I have read all of the scoop on this drug, in particular the part about bone cancer and other side effects like joint pain, weakness and nausea just to name a few. Making the decision to start using this medicine is not an easy choice. It is just one more in a series of decisions I would prefer to never have to consider.

I lay out the choices to Marty, I tell her what I know, which is at best surface knowledge. I want her to weigh in on this decision. Taking Forteo is not easy. It is expensive, requires daily injections for two years and is complicated to maintain and purchase, and it has the whole caused bone tumors in rats’ thing going for it. It does grow bone though and the hope would be that it would strengthen Marty’s bones so maybe we can avoid another calamitous fracture such as a leg or even a hip.

I really hate deciding this kind of stuff. This is just one part of care giving that particularly sucks. This is where it would be much easier just to move on, not do anything and let the chips fall where they may, but that option pretty well bites. Marty was always the go to person for medical decisions in our family, she led on those hard decisions. My personality really doesn’t fit well guiding this decision process.

Marty tries to help but I know she is ultimately swayed by what I say or don’t say and will always follow my lead. I simply can’t abdicate; it’s not an option in our relationship today. It really falls to me to talk with her doctor’s, whom we trust, to research and read and then weigh the risks versus the rewards.

I am always biased to some sort of purposeful action, in this case the risk of doing nothing is simply not acceptable, we need to deal with the risks of taking the drug, we need to accommodate the expense and the inconvenience of the drug in hopes of forestalling future and even more devastating bone fractures.

So, once again I find myself prowling the bowels and recesses of the internet trying to increase my chances of earning the Doctor of Marty degree. Being the teacher suck up that I am I’m always trying to know more and do more for approval from the grand master Marty. She has high expectations, but she’s really pretty easy, she’ll let you cheat if you kiss her on the cheek.

I'm Lovin' Me Some Good Drugs

Roughly 16 years ago our son, Matt, now 30, had a small scratch on his leg. That scratch became infected and he ended up having emergency surgery on his leg to remove dead flesh, spent about three weeks in the hospital and about six weeks on some of the strongest antibiotics known. It was really our first brush with the power of bacteria and the miracle of antibiotics.  I've often wondered how this would have ended in 1910, would Matt have both legs, would he have survived?

Bacteria in all of their assorted sizes and colors have been the bane of Marty’s existence since she had her second stroke. Respiratory, sinus, urinary tract infections are a fairly regular part of our life. We have learned about methicillin resistant staphylococcus aureus, e coli, pseudomonas aeruginosa, Staphylococcus Aureus, Streptococcus pneumoniae, and more. It’s amazing how many naturally occurring things, like bacteria, can really cause your day to go sour quickly.

If not for the fairly consistent infections our home life could be reasonably normal (whatever that is). We have gained the skills we need to handle the disabilities from the stroke; it’s handling the persistent medical issues that wear on you. The bacteria require constant vigilance, and cause the most danger to Marty on a day to day basis. It’s the bacteria causing us to be frequent flyers at the offices of the Great and Wise, it’s the bacteria pushing us to have the blood tests, it’s the bad, bad bacteria. For people who had strokes in the 40's and 50's -- this wasn't even a discussion.

On Saturday night I scratched my head, it itched and it felt good to give it a really good scratch. Because I live with a lovely woman who is a human Petri dish the Saturday night scratch had me in the doctor’s office by Tuesday. (Yes, I do wash my hands religiously) It’s never good when the doctor looks at your forehead and says, “Impressive, I don’t like the looks of that.” In a matter of about 48 hours I had developed an itchy, painful bout of cellulitis, a nasty skin infection.

I’m not sure which of the panoply of bacteria attacked me but it moved fast. Then the miracle of medicine, I started taking only one of the roughly 120 antibiotics available to us. It worked and when you think about it, it’s amazing. Prior to the advent of sulfa drugs and penicillin at the turn of the 20th century people with cellulitis, people with staph infections, people with strep infections died, I’m going to be alright. If I had been around at the turn of the century and scratched my melon like this I probably wouldn't be around to tell this story.

Antibiotics are amazing things. The scientists of the world have developed all kinds of drugs for us to fight the evil bacteria (I know, not all bacteria is bad). There are penicillin based, fluoroquinolines, cephalasporins, sulfas, tetracyclines, gentamicins and macrolids. There are broad spectrum, narrow-spectrum, oral, IV, gram-negative and gram-positive and the list can get longer. All of them do the same thing, or not, or they do it differently somehow, some way, I don’t know, I don’t understand it, it makes my head hurt. God invented doctors to know this stuff.

I know we have to be careful with our use or overuse of antibiotics. Evil bacteria are really pretty sneaky about morphing into something resistant to some drugs we use too much. I hope our medicine can continue to keep pace with nature because our ability to fight infection has increased all of our life spans and improved the quality of our lives, like not having to cut off limbs on a regular basis.

Sometimes it’s pretty easy to think simply taking a pill will cure all. We take so much for granted. I know antibiotics saved my son’s leg and probably his life. I know they have saved literally given life back to Marty. I suspect this minor little skin infection would not have been minor without the good services of a Doctor and miracle pills. I’m glad some really smart, inspired people figured out that whole moldy penicillin thing.

Broken and Confused

The Sunday seizure which led to the Monday broken arm diagnosis amounted to a bad 24 hours. It was worse than a bad day, it felt catastrophic, and it felt like doom. It was, in a word, depressing. We had worked so hard and had made so much progress against so much adversity; and it felt like we were thrown back three years. In some ways it was like God dropped another mountain in our way forward and while I'm a big fan of Job I have neither his patience nor his faith.

It took me a couple of days to kind of get my bearings and to start figuring out the best way for us to handle the new mountain. I just knew surgery was not a good option for us and once the orthopedic surgeon said she would gain some use of the arm, it seemed like the mountain laid before us was at least climbable.

We are dealing with the broken arm and trying to deal with the side effects of the anti-seizure medication, Keppra. In a word, it sucks. The Keppra makes things confusing for Marty, it slows down an already slow brain, it makes her sleepy, it makes her feel really tired. We did this once already, three years ago and made a very deliberate decision to eschew anti-convulsants; they simply made an already hard life more difficult and less enjoyable for Marty. Now, somehow, we find ourselves back to the same spot of three years ago only with a broken wing.

Marty and I spent part of the afternoon looking at various anti-seizure meds and looking at the possible side effects from all of them. Virtually all of them talk about sleepiness, confusion, loss of coordination, exhaustion. Some mention other wonderful things like nausea, vomiting, constipation, hair loss or kidney stones. When is the cure worse than the disease? I don't know, this is once again one of those decisions we have to make where there aren't any good answers.

If you have ever seen a seizure it is very simply horrifying. I can't imagine what it must be like for the person having the seizure, I know it must be completely disorienting and very frightening. The first time I saw Marty seize I thought she was dying, she convulsed, she drew up, sucked for air, turned blue and shook violently. I felt real panic creep up my back and neck before I called 911. The 2nd time it happened I knew better what to do and I got my face close to Marty's and told her I was there and it was going to be okay. I'm not sure how convincing one can be in those situations. I just wanted her to know someone who loved her was with her.

I really, really don't want her to go through that again, but I don't think she feels even close to her normal. I don’t know if any of us can take any more steps backward right now. The whole thing feels like such a loss, it feels like going back too far, it feels like false choices again.

We will talk to Marty's doctors, Marty and I will talk, we will talk with our kids and figure out our next steps and what is our best course of action. I am committed to giving Marty's body adequate time to adjust to the Keppra but I am just as committed to doing everything I can to make sure Marty has every chance to have as much quality in her life as possible. We shall see.