Updates from Dec. 21 to March 3rd
March 19, 2010 at 10:51am
I did not update everyone so well the last few months on my FB so here is some of my blog entries to fill you in in how great I am doing. So far I have completed my 7 day infusion and 3 boosters. My next one is in May!
Dec. 21, 09 update
I’m doing well still. On Thursday, last week, Ken and I went with my little brother and his wife and my new nephew to a holiday party thrown by his P.T. A lot of the staff there had read my book and really wanted to meet me in person. And with the Ketamine working so well, I was excited to show off. I was shaking hands and proud as can be at my progress. The doctors there were very interested to hear about the process and most had never heard of Ketamine procedures, so I hope I excited them enough to go and research how easy it is to administer and how much it can help their patients. We need more doc’s doing this Ketamine procedure. Whilst out, we started noticing that with little to no pain my vision was not doubled, I was walking more up right as well as the no sweating, blanching, or vomiting. I started to get tired/worn out and so did my nephew so we headed back to my sisters. It was so exciting for me to get out and actually enjoy the experience and meeting people and it was exciting for my family to see me doing so. They say I have a new glow and look of happiness that they have not seen for years. I am feeling very well, just tire easily.
I traveled for 8 hours to my dad’s house (which is normally 2 hour drive) last Friday night. The ride was so long, and because of the snowstorm that hit the east coast, by the time we got to my dad’s house the pain was an 8-10 level. The burning pain was back. The roads were slow going and there were accidents all over. The stress level was high and on top of that, the car I was in was very bouncy and every “ice rock” we hit reverberated through me. My seatbelt was going over my port (in the left chest) and as the car bounced around the seatbelt would lock up causing me more pain. I tried to sleep during the ride but only was able to stay down for about an hour, the pain was so intense. I was nauseous from the pain and ready to cry as I thought the pain would never subside again. But Saturday afternoon it began to get better. I got to see my older bro and his family (wife and my 2 nephews) as we had Christmas dinner Sat evening. I did not try hugging them until the end. But it went great and we did soft hugs at the end. I have only done air hugs up to now since the RSD went full body, so it was one of my goals to hug my family members if the Ketamine worked. I rested Sunday and we watched a couple of movies and the finally of survivor and my pain levels continued to go down. It is now Monday morning and I am feeling pretty good. Pain level is about a 2 in some areas, but most of me is a 0. We are going to head back to my sisters in a couple of hours. I pray that it is only a 2-hour drive and that the interstate is clear the whole way.
My first Ketamine Booster is Dec. 28-29th. Yes, two days, I found that out last week. The boosters are 4 hours for two days. I will do this set in Pa, at Dr. Schwartzman’s office and then hope to have my AZ pain doctor (Dr. Siwek) take over administration of them. I will have one two weeks after (so, mid January) and then one month after that (mid march) and then after three months (June). At which point I will be reassessed. As long as I stay in remission, I will not need to do it again. However any trauma can take me backwards and after the car ride to my dad’s I see how little the trauma has to be. Dr. S explained to me that my nerves are still “bad nerves” that he got to behave but they still want to be bad so I have to be careful not to give them a reason. If at any point after the June procedure, I can start the process over, if I come out of remission and if I have the funding to do so. ~ Barby
Jan 5, 2010
New Years Update
OK, I am back in AZ and doing well. I got my boosters Dec. 28th and 29th, 09 and I can’t remember much about it. So, I arrive at Dr. S’s infusion suite and sign in. That morning I could not remember if they said to take 1 or 2 Ativan, so I took 2. I remember the nurse called us all back and told us our assigned chairs and then led us each into a room where our access lines (ports or IV) were inserted. That is the last thing I remember until Dec. 31, 2009. Ken says I told him I was out of my body and that I felt like a bunch of blocks. He adds when trying to walk, I looked like I thought I was a bunch of blocks, that had to look funny. He said I was doing well until he got me to the hotel room and as he opened the door, I said I am going to throw up and went toward the trashcan. Well, I missed and he had to clean up. 🙁 The next day he told the nurse what had happened and they gave me extra nausea medication so it did not happen again. After the infusion on the second day, Ken drove me back to VA.
We spent the next two days at my sisters and then New Year’s Eve w/ my brother, his wife and their new son. We headed back to sisters at 2am and took a short nap, leaving for the airport at 4am. The flight home was a little bumpy in some places, but it was straight through (5 hours) to AZ. We had no radio or movie on board, but we both took the opportunity to sleep. Over the weekend, we went through our mail and were happy to see that we received more donations while in PA/VA. We also got a bill from Drexel Hospital for 104,599. Are you kidding me? I spoke w/ them today and we are working on getting some of it taken care of, which will be nice seeing that I had to take out a medical loan for most of the $18k I prepaid. It can take up to 45 days to get it all sorted out.
I am sure that we will be ok! My pain levels have stayed at 85-100% pain free. The burning pain is practically gone. It has tried to sneak in there a bit, but then I go rest and wake up doing better. I guess that is what the boosters do. They remind, my nervous system to be “good”. As well as Dr. S’s instructions to do, no physical therapy and the papers sent home w/ me to avoid injuries!
We met other patients and their caregivers in PA at the booster treatments. It was great to exchange info and make some new friends who are going through the same thing. We have already heard from a few of them since arriving back home.
I am waiting to hear from my AZ pain doctor about doing my next set of boosters here in AZ instead of flying back to PA. But I do have dates set in PA if needed that I will use in Mid-Jan. So, I may be making another trip out there real soon. One good thing/bad thing is on my trip out to PA the airline messed up my scooter battery and it will cost $250+ to fix it. In place of the battery repair costs, they gave me a free roundtrip ticket, so I can fly free on this next trip if needed. And, I am not using my scooter anymore so I have time to get it fixed, when we have the money.
Last night, I decided to walk to the mailbox. It is quite far from our house. By the time I got there and put the key in the box, I was already tired, then I realized that… I had the wrong key. So had to walk all the way back! Then Ken and I drove to the box w/ the correct key as I was hurting too bad to try again so soon. Oh Well, I am learning my new limits. ’till next time- My Mission is continued Remission! ~ Barby
Jan. 16, 10
I got word earlier that Dr. Siwek’s office (The Pain Center of Arizona), in Phx, was able to get the Ketamine. He will be doing my next set of K-boosters in Phx as a trial & if everything goes right… maybe somewhere down the line, he will take other patients needing boosters. I am very excited. Thank you to Dr. Siwek and his staff (especially Michael)
I also got a special message from a FB friend: Shirley Stratton who said, “Received your book yesterday(rather all 3 of them ~~1 to my pain doc !)…half done…impressed. Very well done, especially for those that are newly diagnosed or even the very young. You relate to others very well Barby. I sense you have more than one calling/mission yearning for you. Saying prayers for you always, especially this coming week!”
This made me so happy that I am able to touch others who are going through the same things I am. I am glad to be in inspirational and a glimmer of hope for them. ~ Barby
January 30, 2010
Hey All, I am doing good. Thank God. I got word this past week that my 3rd set (of 4) boosters will be on Feb. 18 & 19th. I also went to see my pcp doctor (Hummel) last Tuesday He was so shocked at how I was doing. I don’t think he thought it was going to work. But he was very happy for me! I did have major blanching that day. Don’t know why and I had a slight fever… but the highest pain I have had since coming back to AZ is a level 4. Nothing to complain about. I have not thrown up from pain since before the inpatient procedure in Dec.
I also got a call last week from a special projects producer who is going to be doing a segment on me and my pain doctor and how it worked for me and he being the first to do this in AZ.
I have slowed down a bit on trying new activities. I have to pace myself and don’t want to get injured and come out of remission any time soon (how about never). I am getting used to my port, although it does hurt. And the weather changes still really affect me and its set to rain two days this coming week. 🙁 On Feb. 4th, I will be speaking to a Fibro group on dealing with pain, staying positive and how to be your best advocate.
Thank you once again to Dr. Schwartzman and his staff and Dr. Siwek and his staff… ~ Barby
03/01/2010
3rd Booster
I got my 3rd set of boosters on Feb. 18 & 19th at The Pain Center of Arizona. I got my access line put in on Feb. 17th and the staff at the Scottsdale HC infusion (cancer center) was very helpful. They actually remembered me from the access line removal the month before. But I did not remember a thing from then as I had just finished the infusion w/ Dr. Siwek. Everything went great with the entire process this time! The producer from AZTV Ch3 in Phoenix was there interviewing me and the doctor (Dr. Siwek) at the start of the first day.
Ken told me I did some funny things, I don’t remember any of it, but wanted to share as the stories are funny to me. First, I was petting a horse (in the car on the way home). Ken hit a bump in the road and I said he killed the horse. I also asked him if he saw the little people. Where, here in the grass… (Again, pointing to a “spot of grass” in the car. When we got home. He pulled into the garage… before he turned off the car, he says, “OK, are you ready to go home”, I said yes. He turned off the car… my response, “boy was that fast”.
Friday night he took me to a neighbor’s house to watch a movie. Well I slept through the whole thing. But at one point, the dogs started fighting. I sat up and yelled at them, and then fell right back to sleep. Now my neighbors have a funny story about me too.
Once I find out when the TV interview will air, I will be sure to post it. Also, I am recording an interview this Tuesday (March 2nd) to air on 3 CBS radio stations in Phoenix. I am excited to be getting so much exposure. ~ Barby
