Careyann's Blog Page

The Blog

2/2/08:

February 2nd 2008
It’s been a year!!!!!!!!!!!!!!!

I had my one year post transplant appointment a couple days ago and I’m very excited to report I’ve officially been without active disease for one year and I feel great! I can’t even begin to sing the song of praise loud enough!

Happy Birthday to Me! With saying that, I feel I must also wish Travis, Ms. Bernie along with Dr.’s Kraft, Nash, and Wundes a Happy Birthday as well………….WE DID IT!!!!

So check it out, this is what I looked like 2/2/2007. The six days prior I’d been receiving chemo and what I called my “Little Bunny Foo Foo” as it wasn’t very friendly. The man on my left is from the company that was storing my beautiful new & improved stem cells. Yes folks, what’s in that little bag he’s holding, saved my life. The gorgeous lady on my right is my rock’n awesome girl Kristen. Kristen was one of my nurses at the University of Washington and we instantly bonded. Not only did she help me through my hospital stay, she became a trusted friend and sister, whom I love dearly.

This is what I look like now. This picture was taken on New Years Eve. The handsome gentleman with me is Mr. Rockford William. He also responds to Rocky, Rock Dog and Rock Star.

My hair may look pretty short in these pics but if you stretch out one of those curls they measure to 5 ¼ inches. I’ve really enjoyed brushing them all out. This creates an afro Foxy Brown (Pam Grier) would be proud of. I then jump out of a corner at an unsuspecting Travis scaring the daylights out of him………This has brought me much joy! The things a girl will do to entertain herself ?

I’d now like to introduce a very special lady. I call her Number Two, but her mother named her Jennifer. Jen was supposed to be the trailblazer of the Hematopoietic Stem Cell Transplant for the Treatment of Poor Prognosis Multiple Sclerosis Study. Boy that’s a mouthful eh, and I really shortened it! Anyway, Jen’s insurance denied her three times and I passed her due to this, becoming the trailblazer and first in the study.

Turns out we only live about 15 minutes from one another. Also it was her and her honey (Tony) that Nash and Bernie were talking with in another room on the day Travis and I were presented with the study and met the people that would end up changing our lives forever……….. Weird huh!

Number 2, I mean Jen, struggled with vertigo i.e.… light headedness and spinning. As if that isn’t bad enough she also received the lovely affects of numbness and fatigue with a splendid side dish of good ol’ cognitive & memory issues.

Jen’s insurance finally got their thumbs out of their you know what’s and she went into the hospital on lucky 7-7-07. She received her new cells on a Friday, it just happened to be the 13th, freaky! I’m thrilled to report that Jen feels wonderful. We both agree that we feel as if our lives were saved and we were given a second chance. Wow, we feel incredible, and when we’re around one another, it’s hard not to smile. She recently had her six month post transplant appointment and her MRI scans show no new lesions or active disease…….hallelujah……… Congratulations Jennifer!

We took these pictures yesterday, 2/1/08…………..isn’t she beautiful!

When I started going through the process, and the appointments at SCCA, I tried to keep the most positive & strong attitude I could muster. Although I was excited and ready to take the plunge, I was also terrified. Scared because no one with MS had gone before me in this particular study. Scared the worst would happen. Petrified that above all, this transplant, like all the drugs, medications, diets, yoga, meditations and procedures, would also fail. Where would I be then? I felt this way, but I could also feel it and see it on the faces of my husband, family and friends. We were all scared, yet hopeful & excited at its possibilities.

In my positive self talk I began to say it was gonna to be “cake”. “No problem,” I’d say when asked about or when someone commented on the upcoming transplant, “it’s gonna be a piece a cake!” I started telling myself it was going to work and tried to keep a smile on my face. I wanted to show my courage and portray my strength. Now I’m not saying I didn’t have my days. There were many where poor Travis couldn’t find the words to ease my fears or eliminate the tears that streamed from our eyes. Or the day when my best friend told me everything was going to be okay & I lashed out and screamed, “How do you know? Don’t say that to me because you don’t know if it’s going to be okay!” I truly was not at my best after I hadn’t slept for many nights due to steroids, and threw a tantrum at the SCCA because I wanted my girl, friend and Research Nurse Bernie. She has always been the one I’ve trusted the most (other than Travis) throughout this chapter in my life.

I began to call myself a “Superstar”. I think it was a nurse that originally called me this after a pretty invasive procedure. I liked it and soon after, all of my Doctors and Nurses began to address, greet or introduce me as this! This simple word helped me through and kept me focused on the positive attitude I wanted to keep, and how I wanted others to see me. As I puked my guts out at the hospital (thank you chemo) I’d say to myself, “It’s okay sweetheart, you’re a Superstar!”

My Mom had this tee-shirt made for my one year birthday present, thank you Mom. Well of course I had to wear it to my one year appt. on 1/31/08. It was a big hit!

This beautiful lady next to me and Travis is the glorious Bernie, she rocks! She’s a hardcore athlete I hear, and even though she’s a lovely person, don’t mess with her on the rugby field!

So now that you’ve met Jen & Bernie, it’s time to introduce Dr’s Kraft & Wundes. Travis and I call Kraft the "Yoda" of MS. He is a Professor of Neurology and the Director of the Multiple Sclerosis Center at the University of Washington. Kraft always greets us with a warm and welcoming smile. He is a lovely man, very easy to talk to and just plain brilliant.

The lady on my right is Dr. Wundes, she is here from Germany studying under Dr. Kraft. She’s the one that examines me and puts me through all the fun neurological testing, i.e…..here hold still while I whack your knee with my little hammer, does it feel the same on this arm as it did on the other when I pinch it?, or my favorite, can you feel this needle I’m sticking into your skin? LOL………in all seriousness she is a wonderful Doctor and person. She organized for her and her co-workers to take part in the MS Walk in Seattle in ’07.

I wish I had a picture of Dr. Nash to post, but I’m sure I’ll get one with him soon. Unfortunately he was unable to be at this appt., but I’m told I’ll see him next month as I give research another picture of my brain.

Nash is rad, a very cool guy. Nash is the Principal Investigator of this study and the Transplant Doctor. His primary home is at the Fred Hutchinson Cancer Research Center, but he floats over to SCCA and UW when he’s doing rounds or teaching. Even cooler than his ginormas brain is that he’s an avid cycler (when he has the time) and rode in last years MS Ride. I hope we’re able to take a ride together one day.

So as I wrap up this very long entry I must add, that although I’ve listed the 6 major players (Myself, Travis, Kraft, Wundes, Bernie and Nash) that led me up to, supported, and took me through the transplant, there are so many more:

From friends to family, nurses, medical staff and prayer groups, doctors and acquaintances, neighbors and co-workers, the support & ripple effect has been amazing. I am truly, and will forever be, grateful to you all. What a year!

ALL MY LOVE…………….CAREYANN

8/15/07:

Hello all – Travis and I spent the day at the University Washington today. The purpose you ask – well it’s my six month post transplant checkup. I had an MRI last week that showed no new or active lessons!

Today we went through all the normal neurological tests. Stuff like lets see you walk, can you feel this, close your eyes stand on one foot, ECT….., and of course did some testing for the study also. This mainly being cognitive rather than physical.

We also discussed some issues I’ve been having with my right leg. Unfortunately it’s become pretty painful (achy, weakness & burning). This was something I just chalked up to as permanent damage. My docs say it could be old scars/lesions that are inflamed. This would be something that would show up on the MRI.

When Dr. Kraft mentioned steroids I think I winced. I must say it’s been really nice living without them for the majority of the year. And I thought I’d never have to take them again. The logic though makes sense, if it is inflammation steroids are made to reduce swelling. What ended up happening was I walked out with a prescription for a drug that is normally given to seizure patients. I guess this is given to many MS’ers that have issues such as mine. We are holding off on the steroids but may revisit it if the pain continues.

Which brings me to a very sad and disappointing subject for me. Due to my leg I am respectfully bowing out of the MS Ride in September. It breaks my heart and I’m very bummed. I went on a short ride the other night and ended up paying for it all night. I’m trying to keep my chin up and focus on the good vs negative. And as a dear friend said to me, “Dude you haven’t even been out of the hospital a year!” So hopefully the medication will alleviate my physical burdens and I’ll be able to begin training for next year!

Hope everyone is having a wonderful summer filled with tons of love, BBQs, and fun filled events! As always Travis and I thank you for all your support & prayers

All my love…………..Careyann

6/5/07:

Hey All – Can’t believe its June already and 2007 is ½ over. April & May were weird months as my white blood counts dropped pretty dramatically. Okay so here’s the very long story put very short….. Counts dropped, it sucked, got the G-shot, counts rose….They dropped again, Bone Marrow Aspiration ordered and performed…. spent the night at Good Sam Hospital per Oncologist’s request. An Infectious Disease Doctor (Dr. McEnery) was called and came and saw me in the hospital, again at Oncologist’s request. Dr. McEnery took me off all medications.

Marrow test results showed that the marrow was/is still healthy. Presently blood counts are rising and I’m feeling much better! They believe the drop was due to a disagreement my body was having with a medication I was on, Dapsone. Of course, this has been replaced.

Okay on to the fun news! Justin (brother in-law) came for a visit and brought my new kick-ass road bike! If you didn’t know Justin is the Master Bike Tech. for Vegas’ R.E.I. So a huge Thank You to Brother J for the bike that was built with so much love.

Also a big thanks to those at @ Oregon State Hospital who walked for the National MS Society in April!

All my Love…..Careyann

4/8/07:

Hello family and friends! Today is day 65, and I'm feeling GREAT!!

I had an MRI on 3/28 at the SCCA. This of course is for research. It's actually pretty cool what they are doing there. As you know I had an MRI prior to my transplant, and will continue to for the next five years.They have to line me up perfectly so they can get the exact picture and angle as before for comparison. It's quite the ordeal getting me perfectly angled, but when they do they have to tape my head down so I don't move even the slightest bit..lol! Then, it's in the tube I go for a couple of hours.

I met with my neurologist Dr. Bowen on 4/4. He reports: NO NEW, AND NO ACTIVE LEGIONS!!!

My oncologist says I'm doing so well, she only needs to see me every other week. I will still go in every week just to have my blood drawn to ensure levels are still rising...cake. :)

Happy Easter!

All my love,

Careyann

3/16/07:

Hey Guys and Dolls, this is Careyann comin' at ya live and direct from HOME!! My apologies that this comes at you so late, I've been meaning to do this for some time now. What a crazy time it's been over the past 6 months. What a wonderful, busy, scary, hopeful, and emotional time. A gambit of emotions for all involved. The support of friends, family, neighbors, aquaintances, and prayer groups has been incredible. Travis and I will be forever grateful!

The Hickman port was pulled on the 5th by Dr. Hickman himself (what a lovely man). That's right...pulled! 1, 2, 3...hold your breath and bite down, 'cause this is gonna hurt! I must say though, out of the three I've had pulled, this one went the smoothest.

Had a discharge meeting on the 6th. This day was bittersweet for me. I developed many close relationships with other patients and s taff, many that I will continue to stay in contact with.

I met my Oncologist on the 8th, Dr. Blau. She and her assistant Betty are nice, professional, and fun. I will be seeing Dr. Blau and Betty once a week for the next year. This is so they can examine me and take blood to make sure all of my counts are still rising; as I don't have a normal immune system.

Things are going very well to say the least! My doctors are referring to me as the "poster patient" for this study, and as a "superstar". My counts are climbing, I'm full of energy, living life, and feeling great!

Again, thank you all so much for all of the support and prayers. I attribute my fast, "superstar" return and energy to all of you, attitide and God's love.

THANK YOU JESUS!!

I'll be updating the blog from now on instead of Travis, I'll try to put an entry in every week or so. Forgive me if I'm not good about it at first.

Thank you Travis for all your beautiful entries, I hope I can do as good of a job!

All my love,

Careyann

2/22/07:

As you all know, Careyann got out of the hospital on the 13th. Happy Valentines Day to us! The doctors did not think they would be releasing her until about the 16th, but her blood counts were up, there were no more fevers, and she was eating and drinking fluids just fine, so they let her go. Since then, she has continued to improve. Her white blood cell count is high because they gave her more steroids. (the lowest dose she has ever had though). This should normalize as she goes off steroids. Basically, she is coming back faster than anyone thought she would, which is great news!

Many of you may be wondering: when do we find out if all this knocked out her MS? Well, only an MRI can tell what is going on in her brain. She won't have one of those for another month or so. Even if that MRI comes back good, we still can't call MS "Knocked out". That is something we will find out over the long term. But for now, know that she has told me that most of the time, she has been feeling even better than before she was diagnosed with MS. As long as that continues (we know it will), all is well in the world.

I will write more after the Docs clear her to come back home (right now we are living in an apartment close to the SCCA). This should be around March 5, if all goes like it has been. Keep those cards and letters coming!

2/12/07:

Over the past days, Careyann has had her blood counts (white blood cell, neutrophils, Hematocrit, plateletts) pretty much bottom out. Her white blood cell and neutrophil counts pretty much hit zero, and her Hematocrit and platelettes were to the lowest the doctors would let them go to (She recieved plateletts 3 times over the past week, but no more blood transfusions). The good news is: It appears that her counts may be on the rise (finally). If they are, this would mean that her stem cells have begun to re-grow her new immune system, and she could get out of the hospital soon. One doctor said this could be as early as Thursday! We'll see though, the criteria for this is that she continues to eat (she has started to have an appetite again, it actually never got to the point of needing IV nutrition - she kinda forced herself to eat), she cannot have any more fevers (she has had plenty of those), and of course, her blood counts need to continue to rise. She has been feeling great over the past couple of days, and 'cabin fever' has set in. She is definitely ready to get out of the hospital! Still, nothing unexpected has happened, so everything is going good. We just have to continue to 'hurry up and wait'. Hopefully she'll be able to 'get out of jail' on Thursday!

2/6/07:

Well, the ill effects of the Chemo, Rabbit ATG, and the transplant are now a reality. For the past few days Careyann has not felt well at all. She has had 2 more blood transfusions (due to very low Hematocrit blood count), and the site of food makes her nauseous. She did not eat yesterday, so they may start giving her IV nutrition. She is also extremely fatigued. Just getting up to take a shower is exhausting for her. This type of fatigue will probably last for a few months, or at least that is what the doctors say. Yup, this is the tough part of this process (not that any of it has exactly been easy). Careyann wants you all to know that she knows many of you have been trying to call her room to say ‘hi’ and send well wishes, but can’t seem to get through to her. Because she is so fatigued, she has been sleeping quite a bit (most of the day). She unplugs her phone when she sleeps, so she is not disturbed. So, if you can’t get through by phone, send her an email, or put a note in the ‘sign book’ portion of this web site. She will see the messages when she is able, and know that you are thinking of her. You can also click the link at the very bottom of this page to send me an email with any questions you may have. I will get back to you as soon as possible.

Not much else to report, even though Careyann feels like crap, she is in good spirits. Also, everything she is feeling has been expected by the doctors (and we both knew what was coming), so there is nothing unusual going on, which is a good thing. I know it sounds funny relating the way she is feeling to a good thing, but I think you get what I mean. I’ll write more in a couple days.

2/2/07:

HAPPY BIRTHDAY CAREYANN!!!!! I am sitting here in Careyann's hospital room on her laptop. Her stem cell transplant occured at 11:17am and lasted until 11:32am. Didn't take long. It was a very small bag, that was given to her through IV. No special machines or gadgets (as I thought there might be), just a straight drip. I have some pictures, but will have to wait until I get them out of my phone tonight to post them. I will write more later, but I have to get back to work for now...

4:30pm - Careyann is feeling OK at the moment, she's been asleep for a while. She is now what is called Neutropenic. She has basically no immune system left (soon to be none). Yesterday, she had 2 blood transfusions, because her hematocrit (one of her blood counts) was too low (25%). This is not uncommon, and actually, expected I guess. Over the next few days, her blood counts will go down to almost 0 (or maybe 0 for one of the counts), and then in about 6-10 days they should start coming up. This is when we will know that engraftment has occured. In other words, this is when we will know that her stem cells are regenerating her new immune system. So, it's 'hurry up and wait' time!

2/1/07:

Careyann is almost done with all of the Chemo, today is the LAST day (WOOHOO!). Tomorrow will be the day that they give her her own 'cleaned' stem cells back. From there it is just a waiting game for her immune system to begin to regenerate.

As of yesterday, Careyann is beginning to not feel so great. The effects of the chemo and Rabbit ATG are beginning to kick in. She (and we) knew this was going to happen, so she has prepared herself as much as one can for it. The good news is that the doctors and nurses have lots of good drugs to counter the ill effects of the other drugs, but of course, they can't take all of the 'crappy feeling' away. This next couple weeks will be rough.

If any of you are planning on visiting Careyann (and I hope you are), please let me know so I can give you some good directions to where she is at. Remember, she cannot have any fresh flowers or plants, as they contain spores, which could wreak havoc on her almost non-existent immune system. There are a few other rules of the hospital, give me a call or email and I'll fill you in on the rest.

Tomorrow is a big day! Wish her luck!

1/30/07:

Careyann went in to the hospital on Saturday. In the last post, I said that Saturday would be day 0, but I was wrong. Saturday was actually Day -6. The day of her actual transplant (the day she gets her stem cells back) will be Day 0, which is this Friday, 2/2/2007. That's right...the Double Deuce (and Groundhog Day) is my baby's new birthday!

I will post more tonight, right now I gotta go to work! Careyann is doing great so far with the Chemo, her room is nice (great view of Lake Washington and the Cascades), and she likes her nurses. More later!

1/25/07:

Ok, it's almost time for Careyann to go in to inpatient status. In the past couple days, Careyann has had a couple small appointments, but nothing really big, or worth writing a bunch about. Tomorrow however, we will find out what time on Saturday she will go in, and learn more of a firm 'schedule of events'. I probably will not write more until Saturday night or Sunday morning, because tomorrow we are going to celebrate our 1 year wedding anniversary! Yes, our actual anniversary is not until Feb. 18th, but it would be nice not to celebrate in the hospital, or just after she gets out. So anyway, we probably won't be answering our phones. Also, I am updating the head shaving party photos as fast as I can, so bear with me, there is about 100 of them that Careyann wants put on the site. If you want any of the photos, email me, and I will send you the large version, instead of the smaller web version.

Here we go! Day 0 will be on Saturday!

1/22/07:

Only one appointment today, the nasal wash. This is where they shove a bunch of saleen up Careyann's nose, and then she blows it out in to a cup. Fun huh? Tomorrow we have appointments with a couple of counselors (did I mention that we are both mentally drained?). This should be good, put a couple tools in our belt to help us through, and keep us strong. Until tomorrow...

1/20/07:

HEAD SHAVING PARTY!!! Way too much happened to write it all here, but give us a call and we'll tell ya all about it. It was a wild and crazy night, I'll just leave you with these photos (I'll post MANY more in a separate page later). All in all, there were (lucky) 13 shaved heads, in 3 states...

1/18/07:

My apologies to all, it has been 10 days since I have made an entry in the blog. I'll try to explain as much as I can to get you all caught up.

Following Careyann's appointments on the 8th, Careyann finally got some sleep! It took a mixture of a couple of prescriptions, but it worked. Since then, she has not been sleeping a full 8 hours, but at least 5-7. Then there was the G-shot (GCSF). This continued each day for about 5 days. Careyann ended up being in quite a bit of pain from it. This is unfortunately, totally normal for this shot. The only way I could describe the pain she was in would be a complete body ache. Not at the muscle level, but at the bone level. Her bones (particularly her hips) hurt all the time (which didn't do so well for sleep either). She was given pain killers to help, and they did, but she has also been on many, many prescriptions lately. So although it helped a bit for her pain, she was not exactly feeling 'chipper' either.

Oh yeah, did I mention that she has been on steroids this past 10 days also? Yup, TEN DAYS! Granted, this was not the IV steroids like she has usually recieved in the past (1000 mg), this was a much smaller oral dose (pill form - 67mg). Even at the much smaller dose, it has been difficult for her to sleep and keep her focus. My wife is a strong woman, and she will make it through, but all of the drugs she is on has been taking its toll on her. It is only just today (stopped steroids 2 days ago, and many other drugs also) that she is starting to feel like normal Careyann again.

After 5 days or so of the G-shot, it was time for Careyann to undergo Leukapherisis. This is the procedure that will extract her stem cells from her bloodstream. If you remember, the G-shot was the drug that would make her stem cells come out of her bone marrow, and into her blood. Anyway, the luekapherisis procedure took about 4 hours one day, and then 2 hours the next day to get the amount of stem cells the doctors needed. In fact, once they got the final count on how many viable stem cells the got from her (process called 'selection'), Careyann ended up being an over-achiever (that's my girl!). The docs were looking for about 5 million cells, and they got almost 10 million from her. Nice job Babe! I wish I could explain the feelings we were both having when we saw the bag of collected cells right before the nurse took them to the lab. We knew that those were the cells that are going to save my wife's life! Too much to write, but ask one of us about it sometime...

So, that is the short version of everything that has been happening with Careyann over the past 10 days. She has also had many appointments pretty much everyday for a variety of things (dental, blood draws, regular doc visits, etc.) other than the things I just mentioned. It has been busy, and somewhere in all that, I'm still working full time, and we both try to figure out how to accomplish the 'normal' things in life (eating, sleeping, cleaning the house, etc.). The emotions have been intense for both of us as well, it's been quite a roller coaster.

Careyann is scheduled to go into inpatient treatment for her transplant next Saturday (January 27th, as long as she does not get a cold or anything before then). This is where they will give her the Chemo to kill her immune system, and then give her her own stem cells back to re-grow a new immune system. I will try to keep the blog updated frquently, but I cannot guarantee it will be daily. Careyann said to ask you all to keep sending her the funny emails (and the serious ones as well). She may not be able to reply, but know that she will be reading as often as she can. My wife and I both believe that laughing and keeping in good humor is very important to her healing process. Thank you for all of your prayers, once again I am sorry for not getting this updated sooner!

1/8/07:

You guessed it...blood draw. Following that was the second shot of GCSF. After that we talked with Bernie (Research Nurse) and Kerry (PA) about sleep and a couple other things. Careyann is still having trouble sleeping (she is soooooo tired!). Kerry prescribed some additional 'sleep helpers', and Bernie had a few excellent suggestions as well. Wish Careyann luck!

1/7/07:

Blood draw, and first shot of GCSF. Linda took Careyann to this appointment, as well as yesterday's blood draw. The break for me was much needed, and Careyann needed some 'Mom time'.

1/6/07:

Blood Draw.

1/5/07:

Like yesterday, there wasn't supposed to be any appointments today, but the powers that be decided that Careyann needs to have a daily blood draw. So, off to the hospital we went. We will now go to the SCCA daily. I don't know if I will write every day that there is just a blood draw. Sunday, Careyann starts her GCSF shot, so I will probably write again after that. That is the shot that will make her stem cells come out into her blood stream, so that they can be collected. The process is called 'mobilization'. More on Sunday.

1/4/07:

Well, there wasn't supposed to be any appointments today, but of course there was. Today's only appointment was an MRI, which completes the one from the other day. It took about 2 hours.

1/3/07:

Today did not have a bunch of appointments, but it was still a long one. It started off with a very large blood draw. They must have taken about 14 vials from her. Note that now that Careyann has the Hickman Line, she will not get poked with a needle anymore, and all IVs will be done through the line as well (all good things). Anyway, after the blood draw, we headed up to the 6th floor, where we were trained on the proper care and maintenance of the Hickman Line. I was taught how to properly clean the site and change the bandages on Careyann, and also how to flush the line. It is critical that both of these things are done daily, in order to lessen the risk of infection. Oh, and if I didn't mention it before, Careyann will have the Hickman in her for about 4 months or so. Yes, I will be very good at cleaning, changing bandages, and flushing by then!

After the training, Careyann went through her first Apherisis. The procedure took about 2 1/2 hours, but it was painless for Careyann. Dr. Nash and Bernie both stopped by to chat, which was nice. It turns out that Dr. Nash is an avid cyclist, and as many of you know, Careyann used to enjoy riding her bike daily. So, Dr. Nash promised Careyann that once everything is said and done and Careyann is healthy again, that he owed her a bike ride. Or rather, it was more like Careyann said to him, "Hey, when this is over, you owe me a bike ride!" Dr. Nash said that there is a bike ride for MS coming up in September, and Careyann may just be well enough to participate with him. Definitely somethng to look forward to!

1/2/07:

Happy New Year! This year is starting off with a very long day at the SCCA (9.5 hours) for Careyann. Today she had a Pulmonary Functions test (again), a meeting with the team nurse, surgery to place the Hickman Line, and an MRI. Yup, that's alot in one day.

First thing was the Pulmonary Functions test. This had to be re-done because one score from the last time was a bit weird. They wanted a "recount" I guess you'd say. The test went well, Careyann's score was much better than the first time, and so there is no more weirdness.

Next, we had a meeting with the Team Nurse (Joanne) and Careyann's new PA: Kerry, who is a nice guy. We both like him. He took over for Pam, who went on a much needed vacation. It was a quick meeting, we didn't have much to talk about, because there are no problems/concerns from any of us at this time. Whew!

Now for the surgery to place the Hickman Line. The coolest thing about the surgery (if there is such a thing) is that Dr. Hickman himself performed the 'installation' of the line into Careyann's chest. He is the man who invented the line, sometime in the 70's, I believe. We both met Dr. Hickman, and he is an incredible man. He is very modest about his invention, mentioning something about Egyptians over a thousand years ago when we asked him about it. He was very personable, with a great bedside manner, which instantly put Careyann at ease. She just wanted to pick him up and hug him!

The surgery took about an hour or so, and all went perfect. While Careyann was waking up (they knocked her out for this), Dr. Hickman grabbed me and took me into another room. He wanted to show me some X-rays of Careyann's chest with the line in, so that I had better knowledge of the 'hardware' that my wife now has. He pointed out the line and other things on the X-rays, and told me about how he put the line in. I thought this was such a great thing for him to do. Through this whole procedure, both Careyann and I felt that we were wholly informed and that we played an interactive role in the process. Not once did we feel as if we were just being 'moved down the assembly line'. Careyann is being treated as a person, not just a number.

The last appointment for the day was an MRI. This went fine, although the MRI tech was not able to complete all of what was needed, so we will need to come back, and Careyann will have about another hour or so of an MRI appointment on Thursday.

Day over! It has been a long one. Tomorrow won't be as bad, only a couple of things to do.

12/29/06:

Another long day of appointments today (starting at 9:30). The good news is: Careyann got some sleep! The prescription that Dr. Kraft wrote was the right stuff to combat the awakeness from steroids. In fact, it may have been a little 'too good'. Last night I went to bed, and Careyann and Nicki were up talking (these two could talk all night). Next thing I know, Nicki is basically carrying Careyann into the bedroom. She had taken her pills about 20 minutes prior, and oh my, they kicked in hard. Nicki and I had quite a time getting Careyann into bed, but once there, she was out. WOOHOO for sleep!

Today's first appointment was a dental checkup (all was well), followed by a meeting with the head research doctor, Dr. Nash. He went over all of Careyann's test results thus far, including blood, lungs, EKG, ultrasound, and others. Everything was well, except for a few minor things (nothing that would keep her from transplant though). She is a carrier of a couple of common viruses (along with about 90% of all humans), and one result of her lung test was suspicious. For the viruses, there is nothing to do about them except to know that they are there in case problems arise during transplant, and for the lung test anomaly, they are going to retest her pulmonary functions on Tuesday morning. Dr. Nash was also very emphatic about getting Careyann in to transplant as soon as possible. Her disease is very active according to MRI results, and all of her doctors and nurses are worried about her MS getting worse rapidly.

Next, it was an appointment with Bernie, the head research nurse. Careyann had a couple of tests left to do to test her brain function. These were some hand-eye coordination tests with pegs and a pegboard, and a math (nothing extreme) and memory test, to show her brain's logical functioning. These are a formality for the study, which Careyann will do again in a few years to see the differences.

The last appointments of the day were a blood draw (no sweat), and a meeting with another nurse to talk about her Hickman Line surgery, which will be Tuesday morning. We also had to say goodbye to Nicki, who had to head home. Thank you Nicki for coming up, you were a huge help to both of us, and we can't wait until you can come up again!

The day ended at about 4:00, and we are both exhausted. No appointments until Tuesday, which will be another very long day. She willl retake her pulmonary functions test, and then there will be a few appoinments in preperation for the Hickman Line, followed by her surgery and recovery. Then, she will have a 2 hour MRI. Yup, things are getting a bit busy for Careyann!

Happy New Year!

12/28/06:

No more steroids! But, Careyann still cannot sleep, and to make matters worse, she was having bladder issues yesterday afternoon (can't go). We took a trip to the UW emergency room, where they took care of the issue, and also gave her something else to help her sleep (the pills Pam gave did not work). This pill didn't work either, so thankfully we had an appointment scheduled with Dr. Kraft (MS doc...Yoda) first thing this morning. Nicki came up from Portland last night as well (after the ER), which lifted Careyann's spirits greatly. Nicki always brings smiles to both Careyann and I, it is awesome to have her here.

All of the 'normal' neurological exams were performed at Dr. Kraft's office, and then we talked about yesterday's trip to the ER. Dr. Kraft prescribed Careyann an even stronger medication to help her sleep, maybe this time we'll have a winner (she is soooooo tired).

After Dr. Kraft, we got some lunch, and then headed to SCCA for one last appointment. This one was with Pam (PA) and Dr. Maloney (Attending Doc). They were worried about how Careyann was doing from yesterday's trip to the ER, and we also had general discussions about how Careyann was doing, and what was coming up. It looks like next week everything will start going in to full swing. By that I mean she will have surgery to put in a Hickman Line, they will start giving her a shot to make her stem cells jump out of her bone marrow and into the blood stream, and then harvest her cells. All of this in preparation for the actual in-patient transplant. Careyann was having a scratchy throat (which we found out was thrush), so Pam gave her a prescription to combat this (just an antibiotic).

This may not sound like much of a day, but it really was. Her first appointmetn was at 9:15am, and the last one ended at 3pm. Having lunch was our only break.

12/26/06:

Ahhhh...the last day of steroids! 5 days is a long time for Careyann (or for anyone else!) when it comes to getting steroids. She is absolutely exhausted, and just wants to sleep for a couple days. Pam (PA) gave her something to help her get some Zs, hopefully it will work. She'll get most of tomorrow at least, 'cause she has more appointments on Thursday.

Other than steroids, today we met with Careyann's Nutritionist. Nice gal, and she had lots to tell us in the short amount of time we had with her (30 min). Careyann is now on a different multivitamin, and she was told that Starbucks is actually better for her than drip coffee! Great, I'll be running up the street more often now I suppose...Oh well, she deserves anything she wants through all of what she has to endure in this. Anyway, she will meet with the nutritionist weekly from now throughout all of her treatment, and afterwards as well. We will also have to go to some classes about nutrition and food preparation. Not much will be different in her diet that we know of yet, just ensuring to eat healthy foods in the right portions at the right times.

The last thing of the day was a heart echo test. This one is an ultra-sound of the heart, complete with the cold goop on the end of the ultra sound instrument. The appointment took about 45 minutes, in which they measured just about every aspect of her heart that they could. Not sure why it took so long, I could have told them everything they wanted to know about Careyann's heart in two words...'Strong' and 'Beautiful'...

More on Thursday!

12/24/06:

Like yesterday, not much to report today except another steroid appointment (which went well). Luckily, Careyann has tomorrow off, there are no appointments to go to. We plan to snuggle up on the couch and watch movies, and we are making a big dinner together, which will be fun. Merry Christmas to all, and to all a good night! Another full day of appointments on Tuesday.

12/23/06:

Not much to report today, Careyann had her steroid appointment, and all went well. She has her fourth appointment tomorrow.

12/22/06:

Happy Friday! Yup, the steroids finally kicked in, and it seemed to happen right when we got to the SCCA for today's first appointment: a weekly checkup with the Doc, and Head Nurse. It was the funniest thing (not that a lot or even any of this stuff is funny), the nurse walked in, and the first thing Careyann does is look at the nurse, flex her bicep muscle as hard as she can, and say, "Come on, you know you want to feel this! Rrrraaaarrr!" Classic Careyann, I love her so much! We all got a good laugh, but I think she may have scared the Doc we just met, Dr. Maloney. He seemed a bit stuffy. Lighten up dude!

The appointment was fine, it was good to see Pam (her P.A. [Physician's Assistant]), and meet Karen (Head Nurse), and Dr. Maloney, who will be Careyann's Attending Physician until mid-January or so. You see, the Docs rotate every month between research and seeing patients. The rest of Careyann's team doesn't change at all. For her, Pam (PA) is the most important gal to know. Pam can write prescriptions, give orders, and make a diagnosis just like a regular Doc, and she doesn't rotate. She and Careyann know each other quite well already. Karen (Head Nurse while Careyann's actual Head Nurse Joanne is on vacation), also knows Careyann quite well now. You see, other than taking her vitals, feeling her bicep (very strong by the way), and doing the regular checkup stuff (like you or I), Karen needed some samples. So, Careyann got a long Q-tip shoved up each nostril. But wait folks there's more! There was one more Q-tip that had to be swabbed. This one not as 'comfortable' as having one shoved up your nose. "Mrs. Willis, why don't you turn around, lean over this table, and look out the window for a sec, this won't hurt a bit." And in what seemed like an eternity (but was really 30 seconds), the 'back door' swabbing was complete. The 'check-up' was over.

Next, the Pharmacist came in to say "Hi", and look at the prescriptions and over-the-counter drugs that Careyann takes (even vitamins). He needed to make sure that nothing she takes is going to interfere with anything she may get during transplant. I guess almost all of the herbal supplements out there are off-limits. Since they are not regulated (and for other reasons), they could have a very negative effect on Careyann throughout her treatment. All of what Careyann normally takes was OK though. One more appointment to go...2nd day of steroids.

I forgot to mention this yesterday, but the IV from yesterday's steroid treatmnet was left in Careyann's arm overnight. This way, nobody had to poke her a bunch of times to get thing started. Yes, it is uncomfortable for her to have that hardware hanging out of her arm, but it was better than the possible alternative. Careyann had a very nice nurse today (they all have been nice though) named Donna. We found out that Donna had 8 kids! WOW! She didn't look a day over 29 either, but she assured us that she wished she were that young (and thanked us for the complement). Her oldest is 21, and she has 2 sets of twins. Two sets! Incredible. Anyway, Donna hooked up Careyann's steroid IV, and all was fine. That is until she was finished. Careyann recieved the entire gram of steroids, and then Donna unhooked Careyann from the IV pump and flushed the port still in her arm (as per normal). She would leave the IV in for one more day. Careyann used the restroom, and came out beet red! She was also itching all over. She was having a reaction (which had never happened before). We got the nurse immediately, and told them to contact Pam, who would know what to do. Unfortunately, Pam did know what to do: have Careyann wait it out. The good news is that this did not take long. The itching and redness subsided...all was well. Pam said this happened because Careyann recieved the IV steroids too fast (30 minutes), and that tomorrow they will be given over an hour. Please know that the 30 minute IV was not the fault of anyone. Careyann has always (7 years) had the steroids over that period of time. We suppose her body has changed over time, and just wants things a bit slower from now on. Yippee! More time sitting in a hospital for Careyann...

Tomorrow will be day 3 of steroids, and if you are doing your math, you are saying to yourself, "Wait a minute, if she has 5 days of this, that means she will be getting her 5th day of steroids on Christmas Day!" That is correct, nut luckily, we talked the Docs into giving her a day off for Christmas. Of course, that means she has to be in the hospital bright and early the day after Christmas to get the 5th dose. Oh well, she'll be there for other appointment anyway, the calendar is starting to get crowded...more tomorrow.

12/21/06:

Today there was not alot, and quite alot going on all at the same time. The only regular appointment for the day was a dental cleaning at the SCCA (woohoo!), which went fine, and her teeth look great. Not much else you can write about a teeth cleaning. The other appointment for the day was a good ol' dose of steroids. For those of you who have been around for a while, you know that when Careyann gets steroids, something is not going right with her body, and that her MS is 'flaring up'. This time her balance is going out, and she is extermely lightheaded and dizzy. She hasn't used the word 'vertigo' so it is not that (whew), but it's not the kind of lightheadedness and dizziness that comes with balloons and a parade either. She has been prescribed 1 gram/day for 5 days of Methylprednisone (Solumedrol). For those that don't know, this is an interveneous corticosteroid that is prescribed for MS patients for 3-5 days when they go into exacerbation (when MS 'flares up'). It usually has the effect of making Careyann bounce off the walls for the entire time, like she was smokin' crack or something. Some of you might be saying, "Woohoo! Sounds like fun!", but believe me, that is not always the case. Sure, it makes her feel better (top of the world), but after many hours of cleaning, organizing stuff, pondering the meaning of life, and did I mention cleaning (?); she still gets tired, but her body won't sleep. From that point, she is more or less succumbing to the 'will' of the drug, and letting it run its course. 5 days is a long time...

Getting the IV started was a pain this time. The nurses finally got the IV in after the 4th poke. Ya, Careyann was not a happy camper at that point. She wasn't raging out at anyone, or anything like that, but it definitely is not comfortable to get poked with a needle that many times. The rest of the treatment went fine, and Careyann didn't get as 'amped' as she usually has, she feels more like she has had a bit too much to drink. Not sure if this is good or not, we'll find out later tonight how she feels. I'll write more tomorrow.

12/20/06:

Today started out by taking a trip to Careyann's normal dentist, or new regular dentist, as we haven't lived in Algona long enough to have seen the dentist yet. Anyway, she needed to get her permanent lower retainer pulled out. The folks at SCCA gave her the choice as to have it taken out or not, and here's why it is even talked about: dental hygeine is HUGE throughout the transplant. The mouth is a warm, wet place where bacteria will want to thrive, and bacteria and no immune system do not go together so well. With the retainer in, it would be more difficult for Careyann to floss. You see in order to floss, you have to thread the floss under the retainer and then between the teeth, which is quite a pain. So, she figured she's got enough going on as it is, so have the retainer pulled, and make flossing easier. The procedure was quick and painless, it actually has taken me longer to type this than it did for the retainer to be pulled.

With that out of the way, we were off to the SCCA for one more appointment: the Gynecologist. Not going to write a whole lot about that appointment, but I will hit the highlights. Highlight 1: It was Travis' first trip to a gynecologist! Yes ladies, now I know the things y'all talk about in those appointments, and if I never go to another Gynecologist appointment, that would be fine with me. Anyway, other than the 'regular' Gynecologist stuff (guys: ask your wives/girlfriends), we talked about menopause, and being infertile. Yes, Careyann will be infertile following the transplant, the chemo will basically 'fry' her eggs (that's how Careyann puts it). We were told she will be in a post-menopausal state. She might take hormones, and she might not, that is a choice that she will make following many more discussions with the Gynecologist about how Careyann wants things to be. For more on this if you have questions, you should probably send an email to Careyann or give her a call. She can explain it in much greater detail.

12/12/06:

Sorry all, running a bit late on this entry. Careyann had 3 things today: a meeting with the social worker, a dental checkup, and a 2 hour MRI. There is not much to report, which I suppose is a good thing. We now know who the social worker is if we need services from her. The dental checkup was just like any checkup you or I would get, and Careyann's teeth looked great! As for the MRI, other than being two hours long, and being uncomfortable, was just like any MRI that Careyann has ever had. Our next appointment is on the 22nd, so I'll write more then (unless something pops up).

12/8/06:

Friday...Spinal Tap day...ugh. The day started off with a roar (or rather a go, stop, go) in the wonderful Seattle morning traffic on the 405 at 7:30am...double ugh. We were on our way to meet Dr. Bowen at his (yes, his) brand new Multiple Sclerosis Center up toward Kirkland at Evergreen Hospital. Dr. Bowen is the Medical Director and head neurologist of the Center. He would be performing the spinal tap...ugh. The MS Center is a very nice facility, we were told it is only 6 months old, and it is the 4th or 5th largest Center in the country. After they get one more neurologist on board with his staff, it will be the largest. Pretty cool, we thought. And even cooler than that, Dr. Bowen will be Careyann's new primary neurologist (she just loves him!). We both completely liked Dr. Bowen, what a great guy...and a highly acclaimed MS neurologist (click here and also here).

Oh yeah, spinal tap. Dr. Bowen performed the procedure in his office, along with 2 Reasearch Coordinator Nurses (one of which was for Careyann's study) and myself in the room to keep Careyann company. I had never watched a spinal tap before, but I suppose there will be many firsts for both of us as we journey through this. Anyway, the procedure took about 15 minutes (to get all of the spinal fluid they needed), and went very well. I will spare you all the gruesome details (the play-by-play) of the spinal tap, but if you want to know, give me a call. Careyann is a little sore in the spot where the procedure was done (and is still sore from yesterday's bone marrow aspiration), but that should fade in another day or so. So, no problems there...whew!

Next, we went back to the SCCA for a meeting with a pharmacist (who ended up being out, so this was postponed). She then did a bone density scan (not a big deal). All that was left for the day was a Pulmonary Functions Test. This was a test for her lungs (OK, maybe you knew what pulmonary meant, but I didn't until now). Careyann did a series of breathing tests which took about 20 minutes. No problems there, everything looked great. Nothing exciting with this one, except that the day was now over (it was 2:45 or so).

Next steps? Well, the next appointment is not until Tuesday (12/12/06), so I will not write more until then. On that day she will have an MRI (the rescheduled one from yesterday), and we will have some other meetings that will take up the entire day. So, until then, if you have any questions about anything that has happened so far, please email me, or give me a call. Good night all!

12/7/06:

Pearl Harbor Day. As the President (FDR) said, "A day that will live in infamy." For Careyann, a day that was both good and bad. The good part of today is that her Bone Marrow Aspiration went very smoothly. She was given sedation, as she requested due to nervousness. The sedation also had a amnesiac in it, so she would not remember the whole ordeal anyway, and guess what...she doesn't. I was in the room the entire time, and saw the procedure. I hesitate to say it wasn't that big of a deal since they knocked her out, because it really was. It was very invasive. They stuck a huge needle (long and thick) into her hipbone, fiddled around a bit, and sucked out a medium sized tube of bone marrow. Honestly, and I hope this doesn't make me a jerk, but I thought to myself, "I'm sure glad that's not me getting that done...". Anyway, like I said, the procedure went great, Careyann felt no pain, and doesn't remember it. All she knew is that she fell asleep, and woke up in a different room (about a half hour later). From check in to check out, the Bone Marrow Aspiration took about 2 hours. The procedure itself was about 5-10 minutes.

So what is the bad part you ask? Well, the 2 hour MRI she was supposed to get got cancelled (the machine broke). Isn't that a good thing? No, and here is why: They have to get 2 MRIs before she can go in to the hospital (inpatient fo rthe actual transplant), and they have to be 3 weeks apart. So, her MRI was rescheduled for Tuesday, meaning that with all of the other things that have to be done, the soonest she could get in for the transplant would now be January 24th. Remember the other day when I said after this week she probably wouldn't have any appointments for a while? Well, it seems that she will, although not as many per week as this week. We will get a schedule tomorrow for what will go on next week. So far we think it is the MRI, and maybe some dental stuff. We'll see.

Tomorrow is another big day...spinal tap first thing in the morning.

12/6/06:

Today started off relatively easy. We had a short meeting with a financial advisor (no concerns there - Thank You health insurance!). After that, Careyann had some dental x-rays taken. Later, she will have a full dental exam as well. Yup, they're even making sure she is dentally sound before giving her the transplant. They are definitely covering ALL of the bases. Again, everyone we encountered throughout the day was very professional and cheerful. It is so nice (for both of us) to be surrounded by positive and caring individuals. It is obvious that the SCCA takes great pride in the care they give, and they are passionate about it. We absolutely believe that Careyann is in good hands. The final thing we did today is meet with the Head Research Doctor, as well as the Head Research Nurse, another research nurse, and one of the team nurses for about 2 hours to discuss the research protocols, and sign many consent forms. There has been a lot of paperwork to fill out and sign, as you can imagine. We were even thinking about getting Careyann one of those stamps that has her signature. Anyway, every little thing they do with Careyann requires written (signed) consent, so she signed many of those today. For those of you that are wondering, NO, these signatures in no way bind her, or keep her from refusing anything she is uncomfortable with at any time. She will ALWAYS have full control over her level of participation in any treatment that the doctors may want to implement. We had many questions answered as well today,ranging from the procedures themselves to life both in the hospital, and after release.

Tomorrow is a BIG day, and a long one. First thing is a blood draw, and then an anesthetic, in preparation for a Bone Marrow Aspiration (click text for definition). After that, and a recovery period, she will undergo about a 2 hour MRI. Maybe that doesn't sound like much to you, but believe me (or rather, believe Careyann), it's a bunch. We will probably be at the hospital for about 9 hours or so. I will write more tomorrow, but that's about it for now.

12/5/06:

Today was the first day of appointments at the Seattle Cancer Care Alliance (SCCA). What an incredible facility! There was a very positive atmosphere there, and everyone we spoke with was friendly, helpful, and very professional. Even better than that, they were punctual. Imagine that, a medical facility that runs on time! Careyann got a physical (same as you or I, more or less) performed by the Physicians Assistant on her team, and also an EKG and chest X-ray. These are tests to make sure that her body is going to be strong enough to handle the transplant, and that there are not any hidden problems that need to be addressed. We also met with the Team Nurse for Careyann, who will be in charge of all of her care while in an outpatient status (both pre and post transplant). She was very nice (Careyann likes her), and gave us TONS of information. Much more than I can digest just yet, or fully explain here. In basics, after the appointments all this week, she probably won't have any appointments for another 3 weeks. That is when things will kick in to high gear. This week will mostly be spent meeting her nurses and doctors, taking care of administrative items, a bunch of tests, and 2 big items: A bone marrow aspiration and a spinal tap. She is not looking forward to either of these, of course, who would! Hopefully they go well, I'll write about them more when they happen. So I guess you would say that this week is going to be a long one, trying to get to know everyone and figure out the processes, ask tons of questions, and oh yeah: tests, tests, and more tests.

For those of you who would like to reasearch a bit more about what the whole stem cell transplant thing is, and how it may effect Multiple Sclerosis, Here is a link to a paper written by Careyann's biggest advocate, Dr. George Kraft, master of all MS knowledge there is (He's the 'Yoda' of MS Doctors).

Click this link —> Immune Suppression Followed by Stem Cell Transplants: An Emerging Treatment for Multiple Sclerosis (MS)

12/2/06:

Welcome to the blog page for Careyann's upcoming treatment. Here you will find a daily (I hope) update of all of the things that Careyann will be going through for the next months. Hopefully this blog will answer the multitude of questions that we all will have, but if you have questions, please click the link below and send them in an email. Email is checked frequently each day, so your questions will be responded to quickly. You can also call on my cell if it is urgent (but I am not posting the number here).

Please be sure and send Careyann a message from this site's homepage! From here, click the 'Home' button in the upper left of the page to take you to the Home page. Then, click the 'Sign Book' button to let Careyann know you are thinking of her. You can view messages from others by clicking the 'View Book' button on the home page.