Thursday, September 6, 2012

New Birthday and beyond....



Thursday, April 26th
STEMMIES GOING IN TODAY!! What an exciting day! It is a bit like Thanksgiving dinner, you work hard and long to get this most beautiful feast together, hours are spent prepping, baking pies, and peeling vegetables, cutting, chopping, slicing, and carving. You set a pretty table with your best china and your best silverware. You use the crystal glasses and put all the food in your special serving bowls with the really big spoons. The centerpiece of the table has to be perfect and appropriate for the event. Everyone’s been invited and you gather around the table for a good prayer of thanks, sit down to eat and.... it’s over in 20 minutes!
The first to come in of the transplant team is the man with my frozen batch of stem cells. He is quiet and professional. I tell him I have heard about him from others, that he is “the quiet one” and I am rewarded with a smile. He gets busy thawing out my cells (runs them under the hot water in the sink) and then the rest of the “team” comes in. My nurse to do the honors today is Eric. He starts setting up the equipment on the IV pole for the infusion to begin. Dr. Burt, Amy and Dr. Hahn join the crowd and the process begins! Amy stayed with me the whole time, but the others ran in and out after the cells finished running in to me; only took about 25 minutes. They have to monitor me pretty closely, taking vitals every 15 minutes. I did very well through it all and had no issues at all.
                                                                            Eric
                                 Dr. Han, Dr. Burt, Amy (RN) & me after my cells were administered
 It was a very emotional day, in a good way. I got good mail, a book about sisters from my sister that she added a bunch of pictures of the two of us and our Mom and her sisters to the pages that just had me bawling my eyes out. I also got a great gift from my friend Shelley from Arizona that was befitting of the day. She sent me 3 stretchy headbands made of beads to dress up my head, they are so cute. With this present, she sent a card that touched my heart. It was a picture of a beautiful white long-haired cat with a tall crystal crown on its head. It represents to me being a princess and daughter of the King! 

I was hungry after the transplant; even though I thought I would need a nap, I didn’t. I laid there for a while trying to fall asleep but that didn’t happen, so I said I’ll have some turkey and cheese on 1 leaf of lettuce (chuckle) and some chocolate ice cream and ginger ale for burps. And, by the way, the chemo gas is pew…strong and not just air; so you need to protect your panties folks! They do have underwear liners that are of good size (after all it is a Women’s Hospital for having babies) that will take care of it.  Gonna go for a walk now…later.


Chemo nightmares!! Not a pleasant experience. I was told about the nightmares ahead of time but didn’t really think about them before they happened. The good part about them was I played the “hero” in my dreams! I had to save the world from a fire that came up from the pit of the earth. I actually “dug” myself into the middle of the fire to bring up dry earth to put it out. Yeah, me! In the next one, I saved another patient who checked himself out of the hospital, pulled out his picc line and was driving away from the hospital. He was stopped by a cop and I came along just in time to keep him from either being arrested or bleeding out! I got him back into the ER just in the nick of time!  There was a 3rd dream, but I don’t remember that one, but I’m sure I saved more lives! I’m so healthy with all my new stem cells in me that I can take on the world!! However, when I woke also had the shakes and diarrhea and a sore bottom to go along with it. Saving the world is hard work!
                                            My future is so bright, I gotta wear shades!! 




Friday, April 27th
I woke up this morning with a tummy ache, nothing major but just not feeling too good. Ate my breakfast, vanilla yogurt and a not much else. Had to take the usual bunch of pills (about 6 of them) and uh oh, here it comes! Caught the first little bit in my hands and fortunately my nurse, Stephanie, was in the room! She ran to the bathroom to get the pretty pink tub for me to upchuck in! There went all my pills in round two! She ran back and forth with about 3 different tubs for me because when you upchuck yogurt, the smell is enough to make you upchuck more! She brought me a wet washcloth too to clean up several times between vomiting, bless her heart. She hustled so quick back and forth between me and the bathroom to throw out the vomit and wash out the tub and get me a clean one for the next round, it was amazing! She would have won a marathon! She did in my book!! I haven’t thrown up for many years, since my girlfriend Tanya and I had food poisoning. I don’t have to remind myself it isn’t pleasant.
                                                                        Stephanie
                                                        My girlfriend Tanya
After that I was relieved to not have to take my pills again until a later time and I got some Zophran thru my picc line and it was my friend from then on whenever I started to feel nauseous, I would get some. Today I was introduced, by recommendation of my nurse, to Ensure! What a good thing this was, I loved it and over lots of ice it is just delicious! Gives you a good amount of protein and helps you have more energy since you don’t feel much like eating at this point. It almost tastes like a treat; like pudding in liquid form. Delicious! 

 more later....

Sunday, August 12, 2012

No denying it...


Sunday, April 22, 2012
I read my bible yesterday, I’ve been sporadic about that, but been busy, tired, etc.; excuses, I know but back at it now and enjoying it very much. Listened to Faith Baptist Church sermon on computer and it was about Peter’s denial of Christ 3 times and his repentance and getting back in the good graces of the Lord. Good service. I pray that I will not ever deny you, Lord if put to the test. Lord, give me the strength for staying strong in you and not being fearful of being a follower of Christ. That is my fear, that I’m chicken. When we are with our Christian family, it’s easy to say how wonderful He is, when you are standing alone and have people against you, it’s easy to keep your mouth shut. I just pray I do not deny! "because He who is in you [me] is greater than he who is in the world."         1 John 4:4b (NKJV)  That should help me be strong enough to do the admittance when the time comes. I think the time is getting closer when we will be put to that test, I don’t want to fail Him.

finally more to this story...

Scroll down to read older posts first...


 

 
Friday, April 20th
Today I receive Rabbit ATG, which is a T-cell suppressant. The T-cells are the ones that go after things that come in to your body that they don’t know or recognize and they fight them off. They would, therefore, fight off the Cytoxin (chemo) that gets rid of the other cells we don’t want at this point. I get the Rabbit ATG for 3 days and then starting Saturday, April 21st I will get Cytoxin for 4 days.
Another thing that happened today is that I was able to pull out clumps of hair. FINALLY! Ok, I am a little odd here in that I was very anxious to get to this point so I could shave my hair off! I actually am looking forward to embracing my baldness! I got so many scarves, caps, hats, pins, ribbons and bows to wear, I always teased that I was going to have the “best dressed head” on the floor! So, I went in to the bathroom with my little electric razor and started the shaving process! Everyone prior to me that I followed on their SCT process did a little Mohawk when they shaved, so I had to try it myself.


Then I ended up leaving my bangs only; I just couldn’t give them up. And, I got a lot of comments (mostly nice ones) from the staff so I kept them until they started falling off in my food! Then, they went bye-bye too.



 


The next couple of days are rather quiet and uneventful (thankfully).  I think it’s around Monday or Tuesday when I start with the loose bowels and therefore sore bottom. My nurse, Sophie; bless her heart, had such compassion. She got me Tucs, Desitin (like for a baby’s diaper rash) and the very soft, moist wipes to clean myself. Let me tell you and forewarn those of you following, that chemo toots and b.m.s are the most stinky you will ever experience. Fortunately, Linda Martin (previous SCTer) told me to get a spray air freshener and keep it handy! That was a good piece of advice! 
 
4/21/12 Midnight PCT is Georgia, but didn’t see her much. Dee replaced her at 8am, she’s a real sweetheart. Busy day, woke at 3:30am, so I’m tired. I seem to have a 3am bladder wake up call.  After laying for over an hour, I’m still awake; but I was able to lie on my left side, my favorite side, without the picc line bothering me like it had the last two nights. 
About 10:30am got Benedryl, Tylenol and the Rabbit ATG (which is a T Cell suppressant); so within an ½ hr from starting the line kept getting air in it and setting off the alarm about 6 times. Then in the next hour the allergy team came in to test me for my penicillin allergy. I was a young child when I was dxed as being allergic to it and they say that within 10 years you can grow out of that allergy. They were here for about 2 hours. Got pokes and pinpricks and pills and waited to see if there were any reactions. There were no reactions, so they are assuming I am no longer allergic to Penicillin. This is important because one of the medicines I will receive after transplant is in the penicillin family (cytoxan). Needless to say, after this busy morning, I did not get my “benedryl nap”! Drat! Sure hope I sleep well tonight!
I’m gonna watch church now on the computer, I can watch videos from the church I go to in Florida.
 
Sunday, April 22 eve/Mon, April 23 morn
Decent sleep, 9:30pm to bed; blood @ 2am, bathroom & back to sleep. Woke at 5am. Even with ear plugs and eye covering mask, it's hard to get a good night's sleep in a hospital! I woke to being
dizzy again, got help to go bathroom. They do an EKG before administering the cytoxin,  and this morning's test was a very slow reading. It seems that the machine got switched to a half reading so it took longer and read weird. They had to do it over. I'm still dizzy & doc came in to see me.
Said to doc that dizzy comes & goes; I get it 1 or 2 x per month, sometimes it lasts couple min or an hour, but the last one was the worst which was after the mobilization dose of cytoxin (about 7 hours), so time will tell. Hopefully it will not last all day or long time. I feel bad because someone has to come and help me go to the bathroom every time so I don’t become a fall risk. That I appreciate but you really feel tethered. Better safe than sorry. Sunrise coming up, see the pretty pink thru the screen.

Blood work decent, electrolytes look good, EKG is okay!
Tues, 24th 6pm
Pretty useless day, healing day! That’s what I’m calling it. Praise God, no pain or nausea. I had a little burping so I got some Zophran. Still breathing heavy, so just did a lot of resting which is good and then heard from my friend Tanya, which was great. Things are ok at home, Eddie is dealing w/ IRS since paperwork was done wrong at our financial institution; but it will get fixed, I’m sure. I’m praising God for that. Feeling the prayers from everyone, I appreciate it so so much. It put me in a mood of praise myself and that feels so good.
God, I love you so much. I praise you, adore you and worship you. Thank you. I lift Stephanie to you Lord and Shelley and the CIDP people! May they rest upon you Father and feel your great love. You are so worthy of our praise Lord. Thank you.
I got my cytoxin today and tomorrow I get a day off. Thursday I get my harvest and Friday I will get another dose of chemo (different kind though). Just one more! Yehaw! 
 
Wednesday, April 25th
I’m really tired today. When my housekeeping gal, Andrea, comes in we kid around a lot but not today. I think I barely got a wave to her. I’m thinking I’m beginning to get neutropenic and started with a bit of a fever, so I get to get another antibiotic.

Saturday, April 21, 2012

Week #5

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 Well, it certainly was a busy week! Sunday I stayed in and rested after a busy week and having to say goodbye to Eddie on Saturday. Then I got showered and dressed for my brother &  sis in law coming to visit. We sat and chatted a bit then went too dinner at The Grand Lux. That is such a cool place, and good food. I had Asian Nachos, yumm-o! Comes with 8 nachos and rice in the middle. I ate 4 of the nachos, not much rice and had a banana pudding dessert. Leftovers on Monday were just delightful!

So, Monday I had the heart catheterization! After getting all prepped for it, a young woman doctor (fellow-in other words, beginner!) came in to talk to me about the procedure and explained what was going to happen and then an elderly doctor (about 80, I kid you not) came in to see me too and go over everything again). No one said who was going to be doing the actual procedure, but I found out soon enough. Then you go in this room with lots of funky looking machines that remind you of a good horror scientific movie scene! Well, maybe not that bad, but pretty intimidating, nonetheless. You lay on this skinny bed--slab might be a better definition, they even have to add arm holders on the sides so your arms just don't drape over the edge and wrap them to your sides and I even hooked my thumbs under my bottom so they wouldn't fall off (not my thumbs, but the arms off the bed)! Then they cover you with (thankfully warm) blankets and remove your beautiful gown! I have already been shaved on both sides of groin in case they need to move from one side to the other to do the procedure (we were able to stick to the right side). Next both doctors come in and the fellow is the one going to do the procedure with the elder by her side, whispering all the while. She did a great job in my opinion and I'm sure she will be a very good cardiologist or whatever when she comes through all her schooling. The needle pinch and lidocaine that burns a bit going in I'm sure is better than not having it at all but it didn't hurt as much as when the port catheter that was put in my neck for the stem cell harvest - location location location must have something to do with that reaction. Ok, so then they poke open to place the line wire to go up to the heart. That doesn't feel too bad and I was able to watch it on the tv. Once they got it to the heart the tvs and other machines moved around a lot so I didn't get to see as much. It felt a bit weird from time to time just moving around in there and when she pushed the dye in to color the blood to see the actual arteries I got a see a few of those shots, that looked really neat; like a tree with the roots going down in the ground. It took quite some time as I imagine there are a lot of places they have to check, so you lay there and lay there. During both my procedures I just kept asking Jesus to hold my hand and keep me calm - the song that came to my mind was "Jesus, take the wheel" by Carrie Underwood! In the end, though, all went well and the elder doctor says to me on his way out "Just stay away from stress tests!" That made me laugh! Later, the younger woman doctor reported to me that my heart looked beautiful and my arteries were like ones they don't get to see very often there! Yippee!! Good report!

So, the next procedure was on Wednesday to have my PICC line put in which is where all the meds, chemo, blood draws will come out of! Yea, no more needle sticks; I look like a pin cushion. 

What a story to tell about this whole situation. The man that brought me in was named Anthony and he was a such a blessing to me all morning. He had cancer and worked through that situation successfully with the Lord's help and we had a nice chat. But, while he was bringing me in to the "holding stall" so I shall call it, he was saying my name for identification purposes and a woman across the hall heard it and thought to herself, "I know that name!" She kept quiet a while during the time I was changing into the gown for the procedure but soon we were chatting and she said, I know you from facebook! Well, imagine my surprise at that! Her son was in for a procedure that was not going to be able to get done at that time and they had been there all morning. It turns out that we are friends because she has the same disease I do and she lives about an hour south of here. Her name is Teresa Richert and her son is Brad. We chatted quite a bit and got some good hugs in too! We both are faith filled women and had some nice "God talk" too. We both felt it was meant for us to meet even though it was an inconvenience for and her son, but hopefully his situation will be able to get fixed so he can get what he needs and they learned a bit more about his problems.

The PICC line went in after having to try two different places (the 2nd one worked just fine; and what's one more poke in my arm anyway?). It bothered me most of all the things as it ends up right in the middle of your chest and feels funny. I lay on my left side to sleep mostly and I can really feel it, so I've had to adjust to that but last night I could actually lay on my left side fairly well and not notice it. 

Okay, we are up to admission day, Thursday. Early day, 7:30am to be at hospital. I hope you all got to see the pictures of the room and my view of Lake Michigan. I think I have the best room on the floor! Room 1566 in the Prentice Women's Hospital. Top two floors are for transplant patients, rest of the hospital is for the babies! 


Got started with Rituxan which is a immune suppressant so it doesn't fight the stuff coming in. In the evening I got a dizzy spell for about a 1/2 hour and the call button was across the room (we've learned to put it where I am sitting) but I knew the nurse was coming soon to give me my evening meds, so I just patiently waiting rather than risk getting up and falling. When she came in, I got up carefully and went to the bathroom to get ready for bed and laid down and went to sleep. All was well after that. I get those episodes every once in a while (about twice a month at no particular time or reason; meds, time of the month, whatever) so I don't know if it's CIDP or just me. 

Friday, getting Rabbit ATG, which is a T cell suppressant. Since I woke at 3am this morning, I was looking forward to the Benedryl nap, but the Rabbit "juice" likes to bubble up and there were lots of beeps to keep me awake and the nurse kept having to come in and fix the line. Then when that was cleared up, about 6 times at least...Then the allergist folks came in to check to see if I was still allergic to Penicillin. I was very young diagnosed with that, and they say in about 10 years you can be over it and since it was probably over 40 years ago, the chances are good that I'm not anymore. Lots of pin pricks and jabs into skin (like the TB  test) and that went on for about 2 hours, so needless  to say, no nap for Wendy today! Hopefully, a good nights sleep coming! The good news is there was no reaction to the test, so they will be able to give me the meds they want to when I may need them from the penicillin family. 

Today, Saturday is the day I start the chemo (Cytoxan) and lots of other drugs to keep away nausea, headaches, etc. The chemo is now in me and so is the Benedryl, so I'm getting sleepy again. I feel fine otherwise, but lots of folks say it after day # of chemo the reactions start, so we will see. I am so covered with prayer and I know God is right here with me; I will handle it all with His grace and help!


I'm gonna stop here and maybe take a nap! Talk to all you good folks soon, I hope!

God bless you all!
Wendy :)



Sunday, April 15, 2012

More info on SCT if interested

Here is a list of others who have gone thru a Stem Cell Transplant if you are interested in reading and viewing their process. Dr. Burt's team does SCT for more than 20 auto immune diseases and has been doing them for over 20 years. The following are just CIDP patients, like me:


 Jennifer Osman   (SCT April 2005) 1st one ever to do it for CIDP

Kevin Devery  (SCT Oct 2007)
great videos :
  
 Jerry Burns  Phoenix AZ  (SCT Feb 2009) 

Tannia Munoz  (SCT June 2009)
great videos 
 
Lynn Mac Donald  (SCT Sept 2009)
 
Alice Dicroce  (SCT Oct 2009)
^^ you can find lots more info here about SCT and which diseases they are working on here

Rossana Roa  (SCT June 2010) 
 
Jim Danhakl   (SCT March 2010)

Sharon Mackwell  (SCT Sept 2010)

Robert Postel  (SCT May 2011) 
http://www.gofundme.com/Stem-Cell-Transplant-Pre-and-Post-Care

Here is a list of other auto immune diseases being treated by SCT:




- Scleroderma (Systemic Sclerosis)

- Inflammatory Bowel Disease (Chrohn's disease, ulcerative colitis)
- Systemic Lupus Erythematosus (SLE)
- Polymyositis - Dermatomyositis - Evans syndrome
- Hashimoto's thyroiditis
- Chronic inflammatory demyelinating polyneuropathy (CIDP)
- Graves' disease
- Autoimmune hemolytic anemia
- Autoimmune blistering diseases
- Autoimmune lymphoproliferative syndrome
- Myasthenia gravis
- Psoriatic arthritis
- Wegener's granulomatosis
- Sjögren's syndrome (Mikulicz disease, Sicca syndrome)
- Churg-Strauss syndrome
- Microscopic polyangiitis
- Relapsing polychondritis
- Pemphigus vulgaris
- Sarcoidosis
- Ankylosing spondylitis
- Diabetes mellitus type 1 (but only if HSCT is performed within several months following disease onset)
- Sickle Cell Disease can be cured with a similar HSCT procedure utilizing mixed chimerism with a partial-match HLA doner