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.
Atypical Multiple Sclerosis 
September 29, 2010 at 4:04 pm
I am researching CCSVI now, after your comment. I agree that this is very interesting. I also wonder, if this is CCSVI, why the different types of MS. How would CCSVI cause a relapse in one person and continuous progression in another? I guess I’ll leave those questions to the docs and other scientists. I have not discussed CCSVI with my doc yet. I want to read a bit more and understand it a bit more before I ask my docs. Have you or anyone else out there discussed the notion of CCSVI with their MS specialists? I am curious to hear what they have said.
July 17, 2010 at 6:58 pm
Cindy,
Thank you for your blog. My husband is in the initial stages of MS — he has double vision. Your blog has given us a lot of information we didn’t know that will help us on our journey.
BTW, have you ever heard of CCSVI? I just stumbled on this today, but apparently there is a doctor, Paolo Zamboni (I think he’s Italian) who is proving that MS is tied to a constriction in the jugular veins. This causes blood to back-up in the brain, and he believes this causes MS symptoms. It’s very interesting and very hopeful!!
Best regards, you are a courageous woman!
p.s. i’m logged in under my blogname, paulreverexpress. It’s a local political blog, in case you’re wondering.
You can read about it at
http://en.wikipedia.org/wiki/Chronic_cerebrospinal_venous_insufficiency
Also there’s a clinical trial in Buffalo, NY http://www.ctv.ca/CTVNews/Health/20100628/ms-buffalo-ccsvi-study-100628/
more links to Canada TV coverage of this: http://www.ctv.ca/search?pageNum=0&q=CCSVI&x=19&y=15
And Also SEE (and this link includes a news report video):
http://www.examiner.com/examiner/x-32750-Lima-Multiple-Sclerosis-Examiner~y2009m12d20-The-Chronic-Cerebrospinal-Venous-Insufficiency-CCSVI-for-MS-Battle
July 11, 2010 at 7:58 am
Hi Lisa,
I sorry you have to go through all of this. Living with a chronic illness is difficult at best. But it is worth it for ourselves. I have family who helped me see that it is worth for myself. I am happier because I fight everyday. Everyday is an opportunity to live again with a day you never lived before.
I know dark days are followed by lighter ones. Your post really touched me, I wish I could reach out help more. Please keep me updated as I know the weight you feel will lessen. We are all here to help and support each other. I wish you love, support and understanding.
July 10, 2010 at 8:53 pm
07/10/2010
Hello.I dont ever send reply on anything.But I had to say “THANK YOU’ I had to let you know that YOU made a difference in someones life today.. ME..!I am not good at computer skills nor do I get on it very often, but today I am alone…and LONELY..and the END OF MY ROPE ! plus years ago..I didnt have a clue WHAT was wrong with me!! ( I AM 44YRS OLD PRESENTLY) so 38 yrs old back then..anyway, it just so happend that I was working in a NEURO CLINIC ..in patient accounting. When I started to fall asleep ALL THE TIME..the worst place to wake up is to the realization that YOU are not dreaming and you are behind the wheel of a car!! The good LORD drove me cause I never wrecked..this went on for weeks..I found my legs getting easily tired and heavy and stiff I even described it as feeling like someone fille my legs with liquid cement and it was slowly getting hard!!I even fell asleep at work and woke up on the floor on the side of the toilet..didnt fall..just laid down and went to sleep!!then I thought I was losing my mind…couldnt concentrate and think..I even said things that didnt make any sence.so one of the docs did brain mri and spinal tap..the nurse called me as soon as he got results to walk down to this iffice..where he informed me that My brain MRI had white lesions on right frontal lobe and my spinal tap showed demylinating myelin sheath…he said POSSIBLE MS. I freaked out..but with further testing he came to diagnose me with 2nd stage LYME disease along with Epbstein barr virus AND cat scratch fever ! ALL AT THE SAME TIME .. it was crazy..He began treating me with very large amounts of Antibiotic and said if no better I would have be in hosp for IV antibiotics too..within a week I started SLOWLY feeling better..it was a miracle ( or so I thought) after 3 months of oral antibiotics aas well as other meds that cant remember to treat my SYMPTOMS..things seemd to get better..he sent me to an infectious disease doc who took his own bloodwork and later ASSURED me that I did not have the lyme or anything like it.but my neuro insisted that I did and thats why I got better on antibiotics..I worked for him..I trusted HIM and after all..HE is the one that gave me my MIRACLE CURE !! SO, I FIGURED THE neuro KNEW WHAT HE WAS TALKING ABOUT…I quit working several months later ..he said I had “residual sideffects” from Lyme but ASSURED me I didnt have MS !I have not been the same ever since//My left side of my body drives me crazy..I have pain and spasticity, stiffning ..uncoordinated..I have worn diapers on a full time basis for several years now..due to BOWEL incontinence. Ihave had left carpaltunnell surgery as well as left ulnar nerve surgery.. I am sure you are familiar with the symptoms that come with a diagnosis of carpaltunnellsyndrome..I have been on prozac for several years as well as Ambien to sleep..I fight with fatigue..sometimes I can go for a day or two but then Im in the bed for several days..but cant sleep..never can get comfortable and thats AFTER paid for the MOST expensive mattreass that tempurpedic makes..I slip I fall I drop thingsunexpectedly..trip..bump into things that cause bruises..pain and tingling and numbing sensations on left side of body down left leg and arm and have ALL symptoms of MS,,cant see well anymore and get vertigo occasionaly..But NOTHING AND I DO MEAN NOTHING compares to the HELL I go through mentally and emotionally on a daily basis..You see..unlike YOU I do not have a closness of family and friends..yes I am married but it take a week of typing to explain how I get no help from him..other than financialy..in fact he is quite hard on my heart..and tramples my feelings..
NARCISSISTIC TYPE ..my parents are not emotionaly present for me either..they split up years ago.. I have one sibling who was adopted and has since found her ‘REAL’ siblings ‘” 3 sisters” who quite easily replaced ME in her life. My oldest son Brandon..The absolute apple of my eye and owner of my heart since the day of his birth..was killed along with his wife by a drunk driver who hit them head on while riding their harly motorbike
they were 20 an 22 yrs old..this happened 11 months ago and I am still here on this earth breathing ONLY for the sake of my 14 yr old son Dakota and now raising My 5yr old grandson Bryan.But I am slowling going down…I now can add HORRIFIC GRIEF TO MY PACKAGE DEAL OF PROBLEMS..I have one childhood friend who lives in another state …I AM SOOOOO TIRED OF ALL THIS.. any way, couple months ago my 400 pound husband had a brain hemmorage and almost died..for has rare bleeding disorder ..now..today..as I mentioned I am alone..which I try to avoid at all costs..in fact..I am home alone all weekend..everybody els is gone..I am ALLWAYS LONELY, BUT NOT ALONE WITH MY LONLINESS..I feel like I have alzheimers..forgetting things has gotten progressivly worse over the last couple years..cant find the words Im trying to say ,forget faces and names and absolutly cant learn ANYTHING NEW to me..counting change has even become a problem I feel soooooo ooold !!
AND STUPID..Today..HAS been a very hard day for me..with no one around I have cried and screamed and grieved for the loss of my son and daughternlaw all day.. I had actually given up on life and living and was thinking about how I cant take IT ANYMORE….but..then.. Federal express delivered a package to my husband that is a different drug for him to try for his blood disorder..I opened it and the new drug is CYTOXAN…SO I sat at this computer in attempt to distract myself from my thoughts..and googled ..CYTOXAN..with a few clicks of the mouse I found myself at your website ..reading all bout MS..i APPLAUD YOUR BRAVERY..I thank you for your openness..and wonderful insight on life..I feel ashamed for wanting to QUIT on myself..but really.. I FELT LIKE I just couldnt go on,Your words Helped me through..thank you..