The doc and his shadow, released me from teh hospital, and told me that I needed to follow up with Dr. Illera for what she wanted to do as far as treatment options! I was so ready to break out of that joint belive me!! BUT dr. Illera came toootling in, to "chat". I didn't liek the topic of this little chat!!! BELIEVE ME I was ready to get the hell our of there and we could chat some other time!! She asked if Doc and his shadow had been in yet, I told her yes and that he said I could go home!!! WHOOO HOOO.... She sat back in teh chari and said I don't think so! WOAH?!?!?!!? She had just told me that I had to stay here ?!?!?!?!?!?! I was honestly in shock!!
She sat there and reexplained what she said then ran through what we had talked about in her office jus tthat Thrusday before, She told me she wanted to start the CYtoxan Immediatly, Before I left the hospital, that way if I had any problmes with it, i was there and they could tackle it then! I argued with her about staying! After all I ahd promised work I woudl be back on Wednesday! Needless to say I didn't exactly win this argument!
That afternoon I called work ( crying my eyes out!!!) to talk to my boss, sadly he was out sick that day and I ended up talking to the CEO of the agency! I explained to her that I would not be back to work tomorrow ( Wednesday!) cause they were holding me hostage in the damn hospital!
I explained to her that I was not sure WHEN or IF they were going to ever let me go home.. THIS was not what I had agreed to!!! I sobbed thorugh this entire converstation!! and for quite a while afterwards, as it had sunken into me that I no longer had any control over my life or my body! I was no longer dependable to anyone else.. Heck I was no longer dependable to my self!
They began the first dose of Cytoxan in what was suppose to be a series of 6-9 monthly doses, the next morning! It made me very tired and kinda queezy.. which is what they said would happen. They gave me lots of fluids and some good ole peeee medicine(lasix). so needless to say once that kicked in.. I was in the bathroom just about every 15 minutes for the next several hours!!
Once I was finally released from the hospital on Thursday, I was very relieved to be on my way home. I was very tired and felt like I had been hit by a mac truck. My mom took me home, BUT before I would go home I had to stop by work and let them know I would not be back for at least another week! I needed the rest and had to go in every day for lab work. I was very wiped out and tired and ready to crawl into my own bed and be able to snuggle with my kitties! I was heart broken when My cats hissed at me and ran when I walked up to them! I got settled into bed and they finally came to snuggle with me! Ahhh the joys of my own bed and home!
I started doing the daily lab work and resting up.I had an appointment with Dr. Illera on the following Friday, when she told me I could go back to work I almost kissed her!!! I was so ready to go back to work after that week!
At that appointment she set up the rest of my Cytoxan schedule, I would be doing the treatments once a month, for 6 months and then go to every other month for 6 months.
I figured I could handle these treatments if they were like this, I could handle being tired.
I got back into the swing of things at work finally! I would be exhausted by the end of the day and would come home and take a couple hour nap before even trying to tackle dinner. The week before my next cytoxan treatment, I felt like I was completly back to normal. I had energy and was feeling really good!
The second Treatment of the Cytoxan didn't go quite as smooth as the first one did! I was admitted to the hospital for it to be done. With the understanding that I could go home once the treatment was done! I checked into the hospital around 7 am.... with the understanding that it would take 12 hours to do the treatment! NOT... I spend more time waiting on the nursing staff to come in and get things started than I did anything. Once I got the I.V.'s started about half way through I had to have a new one done! Becuase my vein just could not take any more. This ment more waiting! I was finally released at midnight! It was 1 am before I got home since I had to do the treatments in the hospital an hour away, so Dr. Illera could oversee the process.
I went directly to bed when I got home and with in a few hours woke up vomiting. This continued for several hours, until I finally called my Doc when I could no longer even keep water down! I called a friend to come and get me, she litterally had to pick me up off the toilet I was so weak. She got me to the ER where I made it about an hour before I had to vomit again, which was the longest I had gone with out vomiting in several hours. They started an I.V. and started giving me medicine and fluids, I was severely dehydrated. I continued to get sick, but now not only was I vomiting, I was having diarrhea which became uncontrollable! So I end up laying there on this wonderfully comfortable bed in a beautiful gown (waiting on clean clothes!) on a bed pan with a trash can next to the bed. and an I.V. running full force! I was quite a site!
They finally got the vomiting and the diahhrea to stop and I was able to go home about 12 hours later. I would have been able to go home sooner but I had fallen asleep and they didn't want to wake me!
I got a phone call from Dr. Illera later that evening to see how I was doing and to also give me a ear chewing for waiting so long to call her! I explained to her that I didn't want to bother her on a weekend! Believe me I didn't have a problem calling her after that!!
I had set the Cytoxan treatments up on Fridays so I could have the weekend to rest and be back up and going by Monday so I could go back to work. IT didnt work out that way. I was still pretty out of it on Monday and didn't go to work! This was mainly from the vomiting problems more than anything.
I went in to do the daily lab work as I did with the first treatment. We did figure out that the Compazine that they gave me in the ER did elevate my blood levels to some degree so I was asked to tell them not to give me Comapzine again if at all possible.
I continued on this same schedule for the next 5months, with all the same problems with the treatment and with the after affects. The 6th month they prescribed me a medication to try BEFORE I got sick afterwards. Since the vomiting seemed to Start with in 12 hours I had plenty of time to get the script filled after I got home (the timing at the hospital got alot better after complaing to Dr. Illera about the time issues!!) My friend came and picked me up and went to have my script filled, it was for four pills. I had no clue that it was going to be as expensive as it was! She brought the medicine in to me and brok the news to me that it cost $160.00 to fill the script (after insurance paid its part!) . I almost died! Thank god I was on the phone with my mom when she came in, Becuase my parents ended up having to give me the money to pay for the medicine! That was WAY out of my expected budget! BUT the medicine helped and I did not get sick this round!! There was light beginning to shine at the end of the tunnel!
I went to my follow up appointment with Dr. Illera to set up the every other month treatments, BUT she was not satisfied with the progress that I had made with the treatments. She wanted to continue for another 6 months monthly then reevaluate after that. She also wanted to increase the medicine and add a gram of I.V. steroids to the mixture. So I continued on the Cytoxan treatments for another 6 months, With having the medicine to take afterwards I did fine with it with the exception of being tired most of the time. Plus being out the time that it took to do the treatments.
After doing the first few months of treatments, I got to the point that it was becomming to much of a hastle for friends to take me over for treatment then come back and pick me up! So I was able to finally move my treatment schedule to having them done at the hospital here and it made a big difference in my timing and being alot closer to home made it easier for me to be able to get to and from my treatments.
I continued taking the medication after wards and thank heavens My insurance company through work changed and I went to a $15.00 co-pay per script for name brand medication! That made affording the medication alot easier believe me! I was also able to get more medicine then just the 4 pills, that I had to carefully space!
At my one year mark of doing the cytoxan treatments, it was decided to go a head and kick back to the every other month schedule, as all of my labs were beginning to look alot better. I was nearing my last treatment and had a major relapse...... resulting in me having to start basically all over again, beginning with the monthly treatments.
I continued on the Cytoxan almost a total of 3 years. Even thought I was on this medication as long as I was I didn't have alot of the side effects that a person on "chemo" would have. I kept my hair, I didn't lose a lot of weight (being on the high dose steroids kept that from happening!!)
I did have a few problems with infections. Once infection that landed me in the hospital in lock down!! I had a raging staph infection, that was spreading very rapidly! So in to the hospital I went!! Geesh it sure was nice to finally be able to see a person come in the room with out a full gown, gloves and a mask!!
I also had some difficulty with swelling in my legs, on particular instance was extremely bad, that my legs were so swollen that the fluid was draining out of the pores in my legs! That sure gave us all a pretty good scare!!
Other than the few minor incidents, being on the medication really helped my kideny function and over all seemed to help the lupus. BUT it did not stop the Lupus completly!
