Friday, March 30, 2012

How these 2 weeks have gone...

Scroll down to read older posts first....

Well, I've been here two weeks now and have gone through all the tests, so I will catch you up on everything...fasten your seat belts!

Last I left you I was going to have a 2D Full Doppler Echo and the Pulmonary Function Test. They went on fine, pulmonary test especially good; I figured due to 22 years of teaching aerobics, even though I often get winded and out of breath easily now. Short spurts-I'm fine, but no long distance stuff for now.

When I went to see Dr. Burt and Paula, they let me know a few things showed up from other tests that need further investigation. In my blood work it showed high counts for Hepatitis B and also a CEA number was a tad elevated. So, back for another few vials of blood. The CEA count is a cancer marker, the range is from ?-3.0 and my number was 3.2. Well, they MUST check these things out. So, I had to have a scan for the abdomen and pelvic area, with contrast. It's a very quick procedure but it requires an IV! Oh goodie, another stick!! Also, I needed to drink a barium beverage, yummy! Not so bad, really. Banana flavor, kinda (just kinda) like a milkshake. Results are that I have 2 small cysts on my left ovary. They were not trouble of any kind, but they have to make sure it wasn't more than cysts, it's good that they are so thorough! When I got home, I had to rush to the bathroom and couldn't imagine why I was now having THIS trouble (I hadn't eaten for well over 12 hours). After a few rounds in there, I called the nurse and asked if this was normal, and discovered that some folks have this happen from the barium! I sure wish they would have told me ahead of time!

As far as the Hep B is concerned, the blood work came back negative for that also. What happens to cause that is from the IVIg that I get to keep the CIDP symptoms at bay. As I have stated before IVIg is blood products from about 1000 other people that go through a cleansing process to remove any problems like Hepatitis, so the process kills any Hep virus but the antibodies are still present in the blood which goes in to me. Therefore, the antibodies were showing up in my blood, but the results from the blood test was negative for the virus being present; so, no worries there either! Praise God!

While this was all going on, off and on for about 3 weeks, I have been having a little achy tooth trouble from a crown I had done in February. There is a dental office here that is used for folks going through the SCT if we haven't been signed off by our own dentists. I was signed off from my dentist in Florida, but this ache just wasn't leaving me. I made an appointment to see the dentist here to have it checked out. I would be really upset if going through the SCT and then having an infection in a tooth would be my demise! I only had to have it shaved down a bit and it feels fantastic now!

This is exactly why they schedule the way they do with the first week full of tests and the second week empty. They ALWAYS seem to find some sort of something that needs to be checked out further. So, if you are coming to Chicago for a SCT, don't count on the second week to be a freebie! It'll probably be more intense than the first since you know what's coming the first week but the second week can throw you for a loop!

Now, I am set to rock and roll and get started on the REAL process. I go in Monday morning to get my first round of chemo. This is an overnight stay in the hospital and my sister will be arriving that day to stay until Saturday! My brother, John and his wife, Janet will be in town and will probably stop in to see us also! A mini family reunion! That will be great.

Yesterday was my first "no appointments" day, other than Saturday and Sunday. I was able to hook up with Andrew Price (a little further ahead of me in the SCT process) and we went over to the medical center to see Bob Boen (also further ahead of me but behind Andy). Bob was getting his stem cells harvested. They use the same machine that is used when doing a plasma pharesis (blood exchange). We had a great visit and I got to see the process in action! Bob's wife, Diane was there too, so I got a little "girl talk" in while the boys were chatting machines or some such...ha ha ha.

Bob was kind enough to get the four of us that are here at the same time, sweat shirts to honor our history making procedure! Take a look at these neat shirts:
                           The "30" represents that I am the 30th patient of CIDP to have SCT!
                             The city-scape of Chicago with the name of the hospital and my title
                                   "Windy City Wendy Comes to Chicago" & my new birthday 

Wednesday, March 28, 2012

How God worked things for me.

 Scroll down to read older posts first................

Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
I believe my purpose in all the things that have happened in my life were to bring glory to God. From Jonathan being born early and being so little (2lb 12oz) to Scott's battle with cancer, taking care of my parents (my dad was legally blind and my mom had Alzheimer's) to this most recent occurrence of CIDP. But these are just the tough things, there are so many more good things that have happened in my life. My relationship with my parents was wonderful; with my siblings (I was the baby) have grown stronger as we have gotten older; both marriages I count as blessings; and being a mother is the most interesting! But, my relationship with my Savior has grown leaps and bounds since I turned about 40 and that is something I will cherish forever.

My choice is to acknowledge Him in all that happens to me, and offer Him praise through the good and bad. This, to me, is what is called faith. We don't know why things happen the way they do, and we may never know and I don't have a problem with that. 

When I was diagnosed with CIDP the doctor that helped me regain my abilities to function best told me that I would probably be on IVIg (Inter venous Immunoglobulin-certain blood products from about 1000 people) and steroids for a time; then wean off the steroids and stick with the IVIg and eventually lengthen the time between IVIg infusions. After a year, I was still getting the IVIg every 3 weeks and still on steroids. I tried to go off the steroids at one point but that set me back almost to the point of how bad I was at the very beginning. Made me wonder if the IVIg was doing much at all. But, you can tell the difference when time goes by that it is time for it again. I just don't seem to be able to do one without the other.

During the first few months after I was diagnosed, Eddie did a lot of research on the internet about CIDP and found a web site called GBS/CIDP Foundation International. I got on it and went to the forum to talk to others that had this same disease. The Lord lead me to a gal named Alice who had a stem cell transplant (SCT). Now, some of you know my first husband had a bone marrow transplant that didn't turn out too well. I watched him suffer so long and hard through that battle, but the thing I remember most is saying to myself "If anything ever happens to me that I need this kind of treatment, I will NEVER do it!". From the time I read about Alice and read her account of the stem cell transplant (you can see it @ God opened my eyes and heart to this procedure. I sat on this information for a while and chewed on it. Kept it in the back of my mind as an "option for the future". I was so frustrated in feeling better, then worse; fatigued then a bit of energy; dizzy or not; shaky, weak, tingles, more weak. I thought "I do not want to do this the rest of my life!" The more I kept thinking about the SCT and reading about it, the more I realized this is something I was truly interested in. I spoke to Eddie about it occasionally and had him read a thing or two and pretty soon he was finding out more information on it than I was! We were praying about it and it was time to put those thoughts into action. I got the paperwork from Northwestern University Hospital and got my paperwork together to send it back to them. I heard back shortly that there was nothing that would hold me back from the evaluation process and we booked a date for me to go to Chicago!

There is someone near to my heart that has made a huge difference for us in that he (and his wife) has helped us financially by paying my plane fare to and from Chicago among some other gifts (they know who they are, thank you!) 

A week before I was to go, I got a wonderful blessing of getting to meet Alice and her partner Sophie! We went to lunch together and I got to pick their brains. I was so excited I could hardly eat (if you know me, you know that is highly unusual!), Alice, of course, having gone through the SCT and Sophie had so much to add as her caregiver! After I was accepted in the program, we got together again for dinner and chatted about it all some more...(I finished my meal this time!)  

While in Chicago for the evaluation, I stayed with my brother John and his lovely wife Janet. John carted me back and forth from their home over an hour away for the two days of my appointments and patiently sat in the waiting rooms for me to meet doctors and test throughout the days. Then, we would go out to eat or he cooked delicious food for me (he used to be a chef and he still cooks great! Filet Mignon for one meal-I know, I'm a lucky girl!). His two kids and their kids live in the area, so we got some well-needed family time in as I stayed for some extra days in order to enjoy them!

Well, take a break folks....I'll be back for more.

Friday, March 23, 2012 Just want to give them a holler here for info. Here are some others on Facebook that have helped me a lot:
"CIDP and Stem Cell Transplant"
"CDIPer's Sharing Group"

Wednesday, March 21, 2012

Begin the SCT process in Chicago

Well, I made it here to Chicago! Right off, I would suggest to any future SCT participants to come an extra day earlier to settle in and get unpacked and go grocery shopping before you have to get started in the pre-testing days. I flew in on Sunday but sure wish I had had an extra day. That said, HOWEVER, the day before I got here was St. Patrick's Day and it was a GOOD thing that I didn't fly in then! Shuttle driver said there were over 500,000 people in the streets that day and the folks he tried to deliver to their hotels had to get out of the shuttle and walk 4 blocks to their hotels because he just couldn't drive any closer for them! So, I don't imagine my getting here a day earlier under those circumstances would have been beneficial! 
My hotel room(s) are beautiful! It is like a small apartment and it is very comfortable. The weather has been wonderful, almost like I was back in Florida! The bad part is that they have not turned on the air conditioning in the hotel yet. Sleeping was very warm on Monday night, so last night I left the windows open which made it better. I do use ear plugs so it's not too noisy because in the city, it's never really quiet. When an ambulance or fire truck went by one time, my word; was that ever loud! Fortunately, it wasn't during the night.

Bright and early Monday morning (8:15am, not so  early as to me it was like 9:15am Florida time and I had been up since 5am anyway) my room phone rang and it was Andy Price, who is here from Australia who is also having a stem cell transplant. He's been here a while and is further along the process than I am. He called to see if I wanted to walk over to the hospital with him and he'd show me the ropes! What a blessing that was, since I wasn't really sure how to get there by foot! So we walked over together and when we got in to the hospital, went our separate ways. 

So, this was my first full day of testing. First up was the lab work, I was a little surprised they only took 14 vials of blood. Maybe because they took 22 when I was here for the evaluation, they didn't need as many this time. I wasn't sure if I needed to fast for the draw so I didn't eat anything; but just so you know if you are a future SCT hopeful, you do NOT need to fast for these draws. So, I stopped at Xray before desiring to get to the cafeteria for "brunch" so I could drop off the Xrays I had brought with me from a previous one I had done in Florida. Well, the gal helped me to go get my Xray done right then and booked me in to see if they could fit me in for the sinus scan so I wouldn't have to come back later that same day. They give you a buzzer like you get when you go to a restaurant and off I went to the cafeteria. I just sat down with my chicken leg, mashed potatoes and veggie when of course, the buzzer went off! I thought to myself "I am not going now! I am going to eat first!" and I did. It went off 2 more times before I got back up there. They took me right in as soon as I walked in the door and got it right done! They are great! After that I just had to go get an EKG and I was done for the day and it was only noon!
I was pretty tired from that so I sat for a bit and read my nook.  I called Andy to let him know I was done because we had talked about going to see Bob Boen, another SCT patient who was in the hospital getting his first batch of chemo for the stem cell collection. Bob is between Andy and me in the process. It turned out that Andy left his phone at the hotel, so he never got my call. I just was resting and waiting in the Prentice Hospital and went to get a cup of coffee and Andy showed up and we sat to drink our beverages until we finished then went to see Bob and his wife Diane. We had a great visit together and had quite a few laughs. I left about 3pm and walked back to the hotel, and laid down for a little nap. 
We had a few phone calls in regards to our debit cards and credit cards; so as a reminder when you travel out of your norm, don't forget to let your financial institutions know or call the number on the back of your card to tell them so you don't have to fix it after!
Tuesday was a bit of a headache day, literally. I met with Paula, she is Dr Burt's nurse who is THE BEST to ask any questions you have. We met for about 45 minutes to go over the whole process I'll be going through and answer any questions I might have. (This was not the headache part, by the way.) Then I had an appointment at 12:30 for my IVIg (this is the medicine I get every 3 weeks to keep me going). Since this was their first time giving it to me,  and the certain kind of IVIg I get, they run it in a lot slower than I'm used to and there is a lot of it to give, so we actually got started too late in the day for me to get it all in one shot. I ended up being there until 6:30pm and I am back again now on Wednesday morning at 8:30am to get the 2nd 1/2. Gotta just go with the flow and handle these little things that pop up unexpectedly.  After I finish this infusion, I will have my Pulmonary Function Test, which takes about an hour and then I have a 2D Full Doppler Echo after that. When I am done these tests I will meet with Doctor Burt to hear him tell me about what he is going to be doing to me for the transplant and answer any questions I have as well. If anything unusual comes up, I will be sure to let you know...

Saturday, March 10, 2012

Continued history

  Remember to scroll down to read "Older Posts" first....

After losing Scott, Jonathan and I stayed in Pennsylvania with Scott's parents for about a month (over the Christmas season) and when the new year came, my sister, Ruth Ann drove down to Florida with us so we wouldn't have to enter the house alone. My good neighbors and friends had cleaned inside and out of the house and planted flowers and just made it look fresh and clean! What a blessing, that made me cry for sure. God brought so many people in to my life to help support and carry us through this difficult time. Folks from my church had helped send my newsletters (we didn't have the communication through computers then) out and helped with fundraisers to cover our loss of income and expenses still needing to be paid during the transplant time. 
Jonathan and I decided to get baptized together when it was offered at our church. That was such a special time for us. We continued to grow and be blessed by our faith and we even went on a mission trip to Tennessee together with the teens (my first, last and only!! LOL) As time passed, the human side of my heart was feeling empty, so I thought it was time to get out in the dating world again. Not something I was looking forward to. I so wanted to share my life with someone again, I really enjoyed being married and had such a good marriage that I was looking forward to see who God had in store for me! I went on a few dates, some better than others, some disastrous, but a learning experience nonetheless.
I went on a web based dating service and met this guy with the moniker "Childguide". Now, I have to tell you I am not a "kid person" so why this name would catch my eye is beyond me (I now know whose idea it was). We talked for quite some time before we even shared pictures and he found a special place in my heart. The problem was he lived in Missouri and I'm in Florida! Again, God to the rescue! Southwest Airlines at the time had some great rates; he flew several times down here for $49 round trip!!! This is my now husband, Eddie! We both knew God put us together and we couldn't be happier. This past February 16th, we celebrated out 10th wedding anniversary! He is my best friend, confidant (when I remember to tell him everything, that is!) and truly my leaning post for what I am going through with CIDP. I was going to say he is my rock, but I must reserve that phrase for my LORD! 
Next blog will start more of my CIDP and SCT story...

Monday, March 5, 2012


Ok, taking a break from the "me" story to put in my schedule. 

Sunday, March 18th - flying to Chicago. Southwest Airlines, arriving at Midway Airport @ 10:25am. Will need to grocery shop and unpack. Pray for lots of energy this day!

Monday, March 19th - Starting pre-testing at Northwestern Univ Hosp. which includes Labs (blood work), EKG, CT of sinus and a chest x-ray.

Tuesday, March 20th - receive IVIg (blood products I have been receiving all along to keep me going until transplant) and meet with Paula (Dr Burt's nurse and #1 helper!)

Wednesday, March 21st - back to hosp for PFT (pulmonary function test), Echo-cardiogram and  an appt with Dr Burt!

Thursday, March 22nd - Vein check (where they will take stem cells from)

Friday, March 23rd - MRI of spine (with and without contrast) Long day here!

Monday thru Friday 26 thru 30th, wait for results of tests and more tests if needed. 

Monday, April 2nd - Admit to mobilization (1 day of chemo). My sister, Ruth Ann will be here today thru Saturday.

Tuesday, April 3rd - discharged from hosp.

Wednesday, April 4th - Thursday, April 5th - I have to take my temperature every day. If greater than 100.4, I would have to go to the ER and page Dr. Burt.

Friday, April 6th - Labs again (more blood draws)

Saturday, April 7th - start at 7am Neupogen ( it is used to decrease the chance of infection in people who have certain types of cancer and are receiving chemotherapy medications that may decrease the number of neutrophils (a type of blood cell needed to fight infection), in people who are undergoing bone marrow transplants & stem cell transplants), Cipro (antibiotic) and Diflucan ( is used to treat and prevent fungal infections).
 Also today, Ruth Ann goes home :(    but Eddie is coming :)!! 

Sunday, April 8th thru Wednesday April 11th - I will be taking the above medicines each day and on Monday, April 9th I will go in for labs again. And on Tuesday, April 10th - I will go in for my IVIg again - should be the last one I ever have to get!!

On Thursday, April 12th - I'll be taking the meds again today, but also going in for the harvesting of my stem cells! 

On Friday, April 13th - If they didn't get enough cells yesterday, I go back for another round of harvesting. 

On Saturday, April 14th - Eddie goes home :'(  boy, that week went fast!

On Sunday, April 15th thru Tuesday, April 17th is empty, so far.

On Wednesday, April 18th I go to the hospital to have my PICC line placed.

On Thursday, April 19th I will be admitted for upcoming transplant. This is day -7. Will receive daily chemo starting today...

Next days are numbered -6 -5 -4 -3 -2 -1

On Thursday, April 26th - Day 0 ! ! I will receive back my own stem cells! My new "BIRTHDAY" so to speak!

Now we count up +1 +2 +3 +4 +5 +6 +7 +8 +9  +10

On Thursday, May 3rd - my friend Carol McCormick will be coming to help me for the next week! This is my +7 day. So she will be there to help when I am discharged after day +10. 

On Wednesday, May 9th - Carol goes home :(

I have to stick around for a bit longer in Chicago to make sure nothing goes wrong. No set date to return is possible to predict.