Back to the beginning
July 9, 2008
So, in previous “The Beginning” post I spoke about the very beginning when I first noticed something was wrong, but not quite ready to go to a doctor. The saga continues.
In addition to my legs not working right, etc, I felt very tired. My hikes became shorter, I traversed easier trails because I would lose my breath, I felt tired, very tired. I would even say fatigued. Then several times heading home with my dogs I passed out while walking. Opening one eye I spied a sloppy, drippy pink tongue lapping my face. Then a petite bubble gum tongue. Then a sloppy, drippy tongue. My lab, followed by my dachshund, lab, dachshund. You get the picture.
During a family vacation to Maine, I passed out while we were exploring a jetty. That was when I told my hubby about the times with my dog. That Monday I went into my pcp’s office. Well, being in an office with about twelve other docs, I actually saw a physician assistant. He did a few tests: follow the finger, lay down take BP (blood pressure), stand up take BP. All seemed fine. I told him about losing my breath while hiking, that I felt tired. He set me up with an EEG and a halter monitor to check my heart over three days.
I followed up with my actual pcp. The results were normal, of course. My pcp, I’ll call him Dr. Callous. Dr. Callous told me I just needed to get in shape, more exercise. Granted I was not a skinny minnie, but I was not overweight. In fact, I told him theses events were happening while hiking, that I actually had to REDUCE the intensity and length of these hikes. While grabbing the door knob, he nodded that patronizing nod and left. Moronic callous idiot.
Several weeks later I landed in the hospital. On a family drive through the country I passed out behind the wheel. YES, BEHIND THE WHEEL WITH MY HUBBY AND MY SON IN THE CAR. I know, scary right. Well, we took off the top to our Jeep Wrangler Unlimited and hopped in for a Friday night joy ride on some pretty small back roads. I drove. I love that Jeep. And we drove. After about two hours we pulled into a dirt parking lot of a small ice cream stand.
The great thing about Jeeps is that owners form a bond, a brotherhood so to speak. There is the Jeep wave as you pass another on the road. Or, as we experienced at that ice cream stand another family of Wrangler owners came over to chit chat. It was a nice hour or so just passing the time.
Dusk set in and we took off for home. With the top down and the heat blasting we made our way on these back roads. I was driving into the setting sun for awhile. Then on a road meant for one car, literally, I felt my system shut down. That is the best way I can describe it. It is like someone hit the “restart” button on my computer.
I immediately pulled over put the car in park, just as I went out. Faded to black. Faded to black in a weird way. From my peripheral to my center I felt everything shut down. Then just as quickly everything came back. Everything you say, yes that is how it felt. My vision, sense of feeling, heart, consciousness. SCARY!
Scary not just for me but for my family as well. Being about and hour and a half away from any civilization my hubby helped me into the back while he took over the driving duties. Not to scare our son, my hubby and I downplayed the situation. But, by the time we got home I was beginning to feel better; although, extremely weak. EXTREMELY WEAK.
No, I did not go to the hospital then. But over the course of the next week and a half I had similar experiences. Including slurred speech, numbness, incoordination. Basically, everything but the passing out part. During the third episode hubby drove me to the hospital. Enough is Enough he said.
This is where the story gets interesting.
Chemo Follow-up
July 6, 2008
Now six weeks since my last Cytoxan infusion, I feel pretty. I continue to strengthen, awaken back to normalcy. Not just in body, but mind as well. No longer am I in the “Chemo Mind” (routine of mentally preparing for the next infusion, while tolerating the ever overwhelming accumulation of physical fatigue). I walk among the living.
Feeling like I emerged from a cave, my year long retreat, I enjoy each moment. Thanks to the Cytoxan, my docs, the chemo nurses, all who walked this path before me, my hubby, my son, my mom, my sisters, my brothers, my friends, the kindness of strangers (Hey, I could go on forever-but I won’t) I FEEL BETTER. STRONGER.
I know there is a disability scale, but I never asked where I was on that scale or even how it worked. I didn’t need a scale to tell me how I was doing. Living life told me that. As a result I don’t know numerically how much I improved. Again, I don’t need a scale of arbitrary numbers to tell me that. I improved greatly in every area except spasticity as evidenced by my past and future posts “Chronicles of ITB Pump”.
To give some taste of where I was before the chemo. I have exactly twelve steps to climb from my first floor to the second floor where lies my bedroom. I could not climb those stairs without my husband. We were making plans to convert formal living room into my bedroom. Not a big deal really, but considering that only two years prior I was taking those steps two at a time even at midnight after awaking at 5AM that morning, it was a BIG DEAL.
I could not touch my nose. My index finger landed on my face, but not my nose. Why is this a big deal? Well, because that was just a test the doc performs to analyze coordination. Do you know how much coordination it takes to shower, get dressed, walk, eat, prepare food. I think you see where I am going. All these tasks were problems for me to complete.
Walking was a big problem for me. Using two forearm crutches and awkwardly uncomfortable (putting it mildly) plastic ankle foot orthotics(AFOs) barely enabled me to get around my house. Whether I parked in our under house garage or in our driveway, a mountain of stairs stood between me and my house. Now, even though spasticity is an issue, I have the strength to tackle that mountain.
The end result is this: My quality of life, my family’s quality of life has markedly improved. My health in general has Greatly Improved. Even my blood pressure which pre-MS was “perfect” (docs told me) to post-MS on the “high side” (again docs told me-nothing to worry about considering) to post-chemo is currently “normal-perfect”. GOOD STUFF!
Ten Months Later
July 5, 2008
So May 23, 2008 was my last Cytoxan infusion. Yeehaw! After ten months you no longer have two good weeks. At about month six your body has had enough. But you still must persevere because the situation demands it. Your alternative is to do nothing, give up. Watch your body, yourself, wither, weaken. Watch your hubby, son watch you wither, weaken. NOT AN OPTION! NOT FOR ME!
Earlier, I mentioned my treatment plan called for twelve months of chemo, Cytoxan. Unfortunately, my spasticity hasn’t improved. In fact, after an unsuccessful round of Botox injections to my calves my docs and I determined that ITB (baclofen pump) is my best option. My hips and torso are so spastic that I cannot bend, dress myself, reach over my head (to get into cabinets, to get dressed, etc.) or walk very easily. The pain is very, very bad.
The Botox loosened my calves enough for my knees to bend, but the problem is my hips and torso don’t move. See, Botox only works on one muscle. All my muscles from torso to feet are spastic. I guess the question becomes “Then why try Botox? Why not just have the pump implanted?”
Good questions. Answer: Insurance companies won’t approve the surgery until all other options are exhausted. That means that even though in December of 2007 when I first saw my neurophysiatrist and she told me the pump is what I need, I won’t get one until the end of July. You can follow me through my journey with the baclofen pump by reading the “Chronicles of ITB Pump” posts.
Basically, I stopped my chemo to get the spasticity under control. I now follow up on Cellcept, which is an immunosuppressant. Cellcept is usually used for transplant patients as assurance that their body does not reject the implanted organ. It is all used “off label” as a follow-up treatment for Multiple Sclerosis.
Atypical Multiple Sclerosis 