Was it worth it?
May 20, 2010
Recently, on my Cytoxan post under the category of Chemo a comment was posted asking if it was worth it in the end. Cytoxan is a chemotherapy treatment for PPMS(other diseases as well) . As you all know Primary Progressive Multiple Sclerosis (PPMS) has few treatment options. Of course when I say “treament” I am referring to disease modifying drugs. Symptom meds are abundant for all types of MS.
My treatment plan called for twelve treatments-once a month for a year. Essentially, I gave a year to this drug in hopes for three to five or more good years. I am going on two years, but I have noticed a small slide downward recently. After some steroids and other med adjustments I am feeling strong again. Yes, I was somewhat disappointed that after only a year and half, the disease is rearing it ugly head. But even with the minor setback I am still much better, feeling stronger than before the cytoxan.
So the question posed is “Was it worth it in the end?” YES!!!! I have learned and continue to learn many lessons thanks to PPMS. One important lesson learned that I cannot stress enough is when dealing with a disease that has no way to positively be diagnosed, nor treatment options of any guarantee than the idea of popping an aspirin and being done with it are OVER! The more difficult a disease the more difficult your treatment options. That is a fact that must be accepted. Once accepted than the idea of a year of cytoxan is at least an option.
Don’t get me wrong. I am not advocating everyone rush to their doc’s office and demand cytoxan. It is an individual choice offered at a time when there are no other choices but to succumb to the disease. Succumbing to the disease was and is not an option for me. Think of the place you must be for the a year of monthly chemo treatments as the preferable option. And the caveat is no guarantee that in the end you will be any better than before you began. Of course, that is not entirely true as cytoxan has been used for twenty or more years in combating PPMS. So there is a history to hang your hope upon.
If you find the treatment you are currently using is worse than the disease, and you are not feeling any better than perhaps that treatment is not for you. On different ms forums and meetings, I hear people talking about going off this med or that med for a respite. They find they need a rest from either dmd’s(disease modifying drugs) or from symptom meds. I have never found this to be the case. I want to scream, “MAYBE YOU AREN”T AS BAD AS YOU THINK!” If you can go off your meds and feel better than on them that should be a wake-up call.
Now, I know what you all are thinking. When I went through a year of chemo there must have been times when I wanted to stop, to take a break. No. No there wasn’t. I had friends and family telling me I should stop because I felt sick and weak from the chemo. But, I knew going into the treatment it would be difficult and the payoff would come after I was done the treatment. I knew that because me docs explained that to me. Also, I did notice improvement along the way. I was becoming stronger both in instant strength and endurance even though the chemo weakened me and made my stomach nauseous all month long.
The second lesson learned from PPMS is that a strong mind is necessary to successfully deal with this disease. Atypical acute PPMS is not for the weak minded. I slipped earlier this year in giving in to mental weakness. After years of dealing with this disease as every day is a fight to feel good. I found my strength again. I find my strength in enjoying my family, my friends, watching a bird, admiring a wildflower, enjoying the moment I am in as that is all I have. There are no guarantees and no expectations so all I have to do is enjoy this moment. Thanks to cytoxan, the baclofen pump, past PPMS patients, docs, family, friends, etc. (you get the idea, we are never alone, we are connected to everyone and everything) I can enjoy this moment as it is worth it in the end.
Cytoxan prep
September 25, 2008
In June 2007 was my first chemo treatment. You can read about that experience in my Cytoxan post. I just wanted to note a few things about how I prepped for the idea of cytoxan and continued to prepare each month.
First, anytime you hear the word chemo, you know you are in for a bumpy ride. Nausea, weakness, hair loss, poison. Yep, thats right, poison. More times than I care to even remember, people in the past year have referred to cytoxan as poison. I know it is poison, but I didn’t really want to hear that word while have it was pouring into my body. Its kinda like having the sad eyes of a cow looking through the restaurant window at you while you’re eating prime rib. You know what it is, but your mind rationalizes it, making it acceptable to eat cow.
That is what I needed to do. Understanding some of the possible side effects was pretty easy. I knew others who have gone through chemo, seen it before. I needed to wrap my mind around it. Also, and this is a biggie, I was not dying, I do not have a deadly disease. This works for and against chemo for ms.
Firstly, because I have ms I got a smaller dose than a cancer patient does. Great, hooray, less poison! Yet, when you are in the throes of being sick from cytoxan, your heart says, “hey is this worth it, I mean we’re not dying here.” My brain responded with “oh yes, it is so worth it to feel better, and have a huge quality of life boost. Think of your son and hubby.” If steroids made me feel better for a very short period of time, than why not try something that could make you feel better for a much longer period of time.
So, now it was a choice I was willing to make. Yes, I could be very sick for a few weeks every month for a year, but have a big payoff in the end. Isn’t that what we teach our kids. Work hard now and you’ll see a payoff in the end. Nothing just comes your way, you must work for it. And really isn’t that the joy of life-the journey. I mean we all, WE ALL, sacrifice and suffer in hopes of a payout. You can insert anything in place of cytoxan and get the same result. Being a woman, I went through nine months of pregnancy then labor and delivery to have a child. Was the sacrifice worth it? ABSOLUTELY!
Keeping a positive outlook was also important for me. My hubby and I spoke those few days before my first dose. He told me not think of the cytoxan as poison, but as good medicine like it is. I did that. We also had a vision going in each treatment and throughout the year of us hiking a mountain. Actually, no, the mountain was not a metaphor of trying to get through the year, but I guess in retrospect that works too. It was what I loved to do. My son and I and sometimes hubby would hike up some of the local mountains. I love the outdoors, love hiking.
So this is what got me through the the year. Or rather a few months shy of a year as I also needed the baclofen pump. I learned to accept where I am. By that I mean I stopped thinking that I shouldn’t be doing this, I shouldn’t have ms, this wasn’t in my plans, etc. Instead, I thought okay, I’m here doing cytoxan right now, that is it. When I began thinking like that, I realized life is pretty good. Seems wierd, but it is the ‘thinking too much about it’ that creates problems. We ourselves put labels or beliefs or conditions on things that make us look at our situation as good or bad. Really it is just where we find ourselves at that moment, nothing more.
CellCept
July 12, 2008
Currently, I am migrating from Cytoxan-chemo-to CellCept. Yes, cellcept is usually used for transplant patients, but it is an immunosuppressant; therefore, helpful in multiple sclerosis. I am taking cellcept as maintenance therapy following my course of chemo.
Usually you start at 250mg (one pill) and after months, yes months this is not an exaggeration, you end at 2000mg. This means eight, EIGHT,8 pills a day. Of course, that is in addition to the multitude of other symptom meds you already take.
But it works. Yep, thats right it works. For how long, I don’t know but I’ll take it. And I’m happy to have something that works. Even though it means even more blood work. After all the Cytoxan infusions, mere blood work is a joy to undergo.
I am only on the first pill. I increased to two pills a day, but my white blood cells plummeted so I had to drop back to one pill a day. Looks like this could take awhile.
Having ms, atypical ms, primary progress ms is like waltzing or a good polish polka. You take a few steps forward, spin, a few backwards but never end up where you begin. If it is done right it is fun. Not that ms is fun, but life is really what you make it. There are no guarantees. You happiness is all about being in the moment, moment by moment. With that in mind, no matter where you are, or what you are going through, life can be good.
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!
Atypical Multiple Sclerosis 