Mimiblog

2 1/2 years later..........July 29 2010

2010-07-29T21:49:00.004-05:00

For so long I have been meaning to update this, but was unsure how to "catch-up".

Then my Uncle John said, "Just let people know you're ok."

Guess what? I'm ok!

It has been more than 3 years and I am doing great.

My lung studies continue to be stable and the inflammation in my lungs remains gone.

I am back to work and I am still trying to catch up with my girls.

I am back to living my life and appreciating all of it.

(Ok, sometimes- after a particularly long day with a certain 10 year old and 6 year old clawing each other's eyes out- I have to remind myself to appreciate ALL of it.)

I am 100% sure that the stem cell transplant saved my life!

Hello...... Is anybody still out there? October 2007

2008-05-29T23:11:00.001-05:00

Me and the girls

In an effort to stop from feeling so ashamed every time someone mentions my blog, I am going to do a quick catch-up.
Plus, I am trying to educate people about the whole stem cell process, and I need a place to send them.
So, here goes.......
(I am a little rusty at this, so bear with me).

OCTOBER 2007
6 Month Check-up

My DLCO is up!!!!! (I really cannot tell you-due to my puny brain (I swear it was the chemo)-what DLCO actually means. It is a lung function test. Suffice it to say that a "normal" (and I use the term loosely) person's is 80%.) Prior to my transplant mine was 43%. It is now 57%.

My chest xray and CT scan show improvement. The inflammation has gone down. The doctors can't hear it in my lungs anymore.

My skin score has decreased. The higher your skin score, the harder your skin. Prior to transplant mine was around 18. (Not too bad by Scleroderma standards.) My skin score now is a 12. Some places even feel darn right loose. (Don't think I haven't realized that I can never have botox or collagen injections or a face lift. It is just like when I wanted to try to have a breast implant auction item at my fundraiser (see November 2008) and someone far more sensitive and with much more class than me brought to my attention just how wrong that would be. Come on, I still think it would have been the biggest money maker.) I can totally feel the difference in my skin. I can make a fist. I can cross my fingers (and I do every time I make a promise to my kids). I can whistle. I can cut food without pain. I can brush the girl's hair. (Shhh. Don't tell Mark.)

My energy is getting better and better.

I have exceeded the Dr.'s expectations. The hope is to halt the disease. My condition is improving.

I could not be happier!

This picture has nothing to do with me or my transplant, but I think it's hysterical. The girls turned our dog into "Grady Montana". There are actually people out there who are scared of this dog. (Note to scary burglars--he can be FIERCE when he needs to be!)

November 2007--Graze and Groove for Scleroderma

2008-05-29T22:43:00.003-05:00

The fundraiser I held for Dr. Burt was a huge success. It was everything that I hoped it would be. I had a tremendous amount of help from so many generous people. I sit here in May 2008 and I still have thank yous to write. (Don't tell my Grandmother). All told we raised $40,000. The money was given to Dr. Burt to further his stem cell research for Scleroderma patients. Dr. Burt came and spoke. The music was awesome, the food was great, the venue was perfect, the auction was a hit. I am planning on doing another one. I need to start a foundation first. I am thinking of next summer.

Again, a huge thank-you to everyone who helped me. It was humbling for me to see the outpouring of support.

You can check out the fundraiser website. It is in desperate need of an update. (Real shocker). I do plan on getting pictures on the site. (It should be abundantly clear to you that I am not exactly on the fast track here, I would wait a few months before checking it. Do not subject yourself to daily disappointment--Mom.)

Here is a picture of Mark & I from "Graze & Groove for Scleroderma".

December 2007-January & February 2008

2008-05-29T21:06:00.008-05:00

Making Christmas cookies.

Putting in requests.
.

Favre love.

Not too much to add. It was nice to enjoy the holiday without having the "will this be the last" thought in the back of my mind.

(I do think that the quality and quantity of my gifts went downhill from last year.)

March 2008--Watch out Washington

2008-05-29T19:56:00.001-05:00

March.

In March I had the privilege of traveling to Washington DC to speak at a congressional briefing on adult stem cell transplants. Dr. Burt was asked to speak in support of the Patients First Bill. Dr. Burt was also asked to bring a few patients and he graciously asked me.

Click on the following link to watch us in action.
http://www.youtube.com/watch?v=UX4lgz0-R5I

Click here to read transcripts of all the stories.
http://www.stemcellresearch.org/testimony/capitalhill_briefing.html

It was so empowering. An incredible experience. I just hope that I was compelling and that people gained some insight into the adult stem cell transplant process and what it can do to help people.
The group that took us out to DC has a lot of information on their sight. (Don't let the "religious" theme of the group scare some of you off. They have a lot of insight into the stem cell controversy. Unfortunately, I am too stupid to attempt to speak for either side. All I can do is talk about my experience.) www.stemcellresearch.org/.

Dr. Burt/Me/Bary Goudy

Senator Brownbeck/Me/Barry/Dr. Burt

Florida- It's good to be back!

2008-05-28T21:15:00.000-05:00

The day after I got back from D.C. We went to Florida with my family. We did not go last year due to being at the start of my stem cell transplant. It was such a great time. Here are some pictures.(don't think that the name of this place was lost on anyone.)

April- Happy Birthday To Me!! One year!

2008-05-27T21:27:00.000-05:00

On April 11th we had a little birthday celebration. One year since my transplant. I cannot believe it has been one year. I feel like it was all a lifetime ago. I feel so incredibly different than I did a year ago-in almost all aspects of my life. I do not for one second regret my decision. It is by far the best thing I ever did. I am so grateful for Dr. Burt and what he has given me.

1 year post transplant check up
Everything continues to improve! My DLCO is up to 60%. CT and chest Xray are still reading "normal". My skin score is down to a 9. Dr. Varga (my new rhuematologist) even thinks that some of my skin feels "normal". I LOVE that word! Normal.
I don't have to see a doctor for 4 months. I don't have to have all those tests for another year! Yahoooooooooo!

Fundraiser

2007-09-26T00:00:00.000-05:00

I feel so strongly about the work that Dr. Burt is doing. I am a living, breathing example of what medicine is capable of.

Unfortunately, research and medical advancement takes money. Lots of money.

Ever since I was diagnosed, I have felt compelled to do something.

Well, I am.

I am having a fundraiser to raise money for Dr. Burt and the Feinberg school of medicine at Northwestern University.

It looks like it could be a really great event. (Thanks to a ton of input, generosity and assistance from some of my friends and their friends.) People who have given so much to me already-just keep on giving. (And here I go asking for more).

I am hoping to make a few dollars for Dr. Burt so he can continue to help people and give hope. So he can give some of us a chance to live our lives a little longer and a little stronger.

If anyone is interested in being on the invite list, please send me an email. mdaniels@wi.rr.com.
You can check out the web site--it is in it's very early stages of construction. (Just another project for me.) www.grazeandgroove.com. The event will take place on November 24th.

Again, let me know if you are interested in attending and/or donating to the cause.

Thanks.

Where Was I?

2007-09-25T12:30:00.000-05:00

Okay. Let's see.
August.......................

I recovered from the Salmonella fairly quickly. (Did I mention how bad it sucked?) I now get my labs drawn every month, unless there is something that is off. (My white Blood Count has kind of fluctuated on & off thru this whole recovery. Nothing to be concerned about.)

We had a pretty active month-no rest for the weary. The girls & I went with my dad to visit my grandmother in Chicago (are you following this?) one day. My grandmother is completely unaware that I have a disease and all that follows it. She tends to be a tad of a pessimist and a worrier & at 94 years of age, we figure she has enough to fret about. (Trust me, she finds plenty to bitch about without knowing this.) She saw me for the first time in about 6 months and she could not get over why I would get my hair cut so short! She was just mystified by it. She still thinks I lay in the sun WAY too much too. Anyway, it is so great to see the girls interact with her.

Me & Busha

My dad, Busha, Martha & Lucy

We went up north one weekend with the Porter family. We had another amazing weekend upnorth with friends. (Tom Porter is the guy Mark races with. More racing news to follow.) This is the third generation of Porter/Daniels shenanigans.

Lucy took this picture of me

Martha & the Porter boys!

We went on our yearly trek to Minneapolis to visit Mark's sister & her family. We had a very relaxing and enjoyable weekend there.

Teddy, Danny & Lucy

Annie, Mark & Danny

The third week in August I had an appointment with my local pulmonologist (lung MD). After much scrutiny, lots of deep breathing (on my part) & a consultation over my most recent chest xray (see salmonella scare in last post)--my Dr. said he truly believes that my lungs not only sound better, but they look less inflamed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Now, I knew this already (based on my own relationship with my body) but it was fantastic to hear it from a real professional. (One that I highly respect & trust.) I have pretty much been giddy ever since. Even if I found out tomorrow that this MD was totally wrong, I would be so happy to have had these few weeks of hope & looking towards the future--the distant future.

The last weekend in August Mark had another car race. He started out doing really well again, and then he stopped coming around the track. This time his car did not stall, he crashed it into one of the corners. The only thing that got hurt, besides Mark's pride, was his car. Needless to say, his season was over in that instant and he has a winter project for him (& Tom-sorry Corey). There is now talk of trailers and new engines, etc. Just wait until next season.

Getting ready to race

Mark getting medical clearance (not happy about me taking pictures)

Lucy's new table

some of the wreckage

What car?!

Martha started second grade the last week of August. Here we go again!

Martha's 1st day

So, as you can see, I hardly had any time to keep up my blog this summer. We had an incredible

summer. It was as active as we could handle and as lazy as we hoped. Looking back, I can't believe how different my expectations for this summer were in April versus what the reality was. I thought I would be more or less watching from the sidelines. I was definitely in the game the whole time. Were there days when I was completely spent before the girls faded? Absolutely! Did I still get lots of help from my supporting cast? Absolutely! (Thanks guys!) Did I exceed my expectations in all aspects of my recovery? Absolutely!

And now it's already the end of
September:

We headed upnorth for Labor day. We had another great weekend. It was a fun "summer closer".

Lucy & Nana
Martha
Lucy doing the cake walk at the fall festival
Martha, Greta & Lucy Billybob

Lucy started preschool the first week of September. She is going 5 mornings a week at Mequon Preschool (Mark's mom's school). She LOVES school!!! What is the best thing for Lucy this year is that her Aunt "Khaki" (Mark's sister Kathy) is her teacher. It makes Lucy happy each & every day she gets to go to school.

Lucy's first day of school

Over the second weekend in September I got to go see where Mark works for the first & only time. It is such an amazing place. I wish I could show you all a bunch of pictures, but that was strictly forbidden. Wouldn't want to "risk" leaking any secrets. (?) All I can say is that Mark has a pretty cool job. (More on just how cool below.)

Mark & I went to a wedding on September 15th. It was a really fun wedding. We got to see a lot of old friends & it felt great to dress up (thanks Sassi) and be out for an evening. Mark also gave me quite a surprise that night. (more details to come later.)

Mark & I pre-wedding

On September 18th I had some of my ingrown toenails removed.

WARNING-WARNING-those with a weak stomach need to skip down to the next paragraph.

These nails were inflammed and on the verge of an infection. I don't know about you, but I'd hate to survive a stem-cell transplant only to die from a toenail infection. So, after 4 shots in my toes (I warned you!) and another antibiotic, they sent me on my merry way.

On September 19th I celebrated my 40th birthday. (Yes, the toenail removal was my gift to myself.)

On Saturday evening, before the wedding we attended, Mark surprised me with a beautiful necklace for my birthday. It was quite a shocker!

So, I started out my actual birthday by waking up to balloons & decorations in the kitchen. I then had breakfast with my parents. It was a glorious late summer-almost fall-day. Lucy & I hung out outside for a while in the afternoon. I sat there thinking how lucky I am & what a perfect day I was having. Mark called me and invited me to go to dinner that night. I hadn't been to a restaurant and I had been feeling like I could handle it. He got my mom to babysit. Right before we left, my friend Betsy dropped off a scavenger hunt for me to do on my way to dinner. Betsy & Sarah had come up with these clues-they were all limericks- that would lead us on a little hunt & then the last stop would have my present from them.

Mark & I were in a hurry-we didn't want it to be a long, late evening. Each clue was completed like a ransom note. Betsy had cute out each and every letter & glued them to paper. (If anyone should ever need a ransom note, I am sure Betsy could give you some helpful tips.) Many of the clues also had pictures from the distant past on them. We got to go to all kinds of our old stops. We actually got to go into our 1st house! All I could think of the entire time was what a great gift this was. The clues were hysterical (and easy-thank you Betsy) and elaborate and Mark & I got to reminisce about some great moments in life.

When we got to the restaurant there was a surprise party waiting for me! My family & dearest friends were there. I had NO idea! It was just incredible. There were pictures of me I hadn't seen in years. Everyone got a CD collection of songs from 1967-2007. And, I ate and didn't get nauseous or sick at all.

I had the best birthday of my life. I just know that I am okay. No, way better than okay. I also know that I am surrounded by some pretty amazing people. I am one lucky old bag! I will post pictures when I get them.

Now, back to Mark's job. Mark left just this past Saturday for France. He had to go to France for work. Work.......................................................
He is motorcycling thru the South of France for a few days and then he is going to Paris for an International motorcycle show. Work...........................................................................
He was just ripped to shreds with the thought of going. He was going to miss Lucy's 4th birthday and he was distraught about it. He was going to be gone for longer than he ever has been. He was just pissing & moaning about having to go. Well, he is having the time of his life. He is still not happy that he is away from the kids, but he is definitely savoring the opportunity.

You are now caught up.
I am just waiting until October when I will have my 6 month follow-up at Northwestern.
I am just starting to really get the house back into my "organized" mode. I feel like I am digging out.
One giant step at a time.
Amy

FINALLY!!!!!

2007-09-18T13:53:00.000-05:00

Well....................

Wow. I can't believe that I haven't checked-in since May. To all of my faithful readers-I am sorry.

Why has it taken me so long to post? The answer lies in my last post from May: "Martha has 3 days left of school." Enough said.

As I sit here on the other side of summer, I cannot believe that September is nearing an end. Holy Sh-- time flies (when you're having fun). We had a very, very nice summer. It was so different than I anticipated. So much better than I ever imagined when I was sitting in that hospital bed last April. I truly feel like I have lived a lifetime.

I want you all to know that I am doing FANTASTIC! I feel happier than I have ever felt in my life. There really isn't a logical explanation for this. (Well, I realize it has a TON to do with the stem-cell transplant.) (Oh, and I did get a whole hell-of-a-lotta support, good thoughts & prayers.) I just feel so....Alive.

The easiest way for me to catch you up is to summarize the months of summer.

Bear with me. (Remember, many of you have been hassling me for this-you asked for it!)

JUNE:

Martha finished school on the 6th. My little rest & recovery pretty much came to an abrupt halt. I still had my helpers, and they were many, but I did not have a whole lot of time to "lay around". I had two little girls all ready & raring for summer vacation. I didn't have a choice but to buck-up, put my head down and move forward--one step at a time.

One of the first things that I did that month was to go to Chicago and visit Devona. She wasn't fairing so well that day, but I finally met Nancy (she had her transplant over a year ago.) She is so strong and upbeat and helpful. My mom, Brenda (Devona's mom), Nancy & I went out to dinner. I did manage to eat a piece of angel food cake-very nervously. I brought my own fork.

Brenda, Nancy & me

Halfway through June I made a trip back to see Dr. Burt. This time I got my PICC line removed!!!!!! For me it was another ceremonial step toward recovery. I was, in a very slight way, less of a patient and traveling closer to the light at the end of the tunnel. (My bubble was burst a little bit when Mark told me that I was going to be just a little less effective at playing the chemo-victim without the PICC line dangling from my arm. I would have to really play off the baldness factor). Labs and such were looking good. My appetite was still pretty poor. I got yet another medication for that.

I can, however, eat large bags of old fashioned Bulls eye carmels. Yeh-you know the ones I mean. Now if you are going to go off and raid the Walgreens that has them, stay away from the Mequon one. I have helped too many people remember this yummy treat and it is getting hard to find them.

We spent a great, quiet weekend upnorth for Father's Day. We had a very peaceful, restful weekend. The girls were fish this summer. Of course I could not go in the lake this summer. There are too many bacteria in lakes. This was a huge hardship for me as I Love to swim in the lake. (I think I can actually hear the collective laughter.) Okay, that was one guideline that I could follow without any difficulty what so ever. It is possible that I may be susceptible to those lake germs for years to come.

the "guppies" upnorth

Martha finally finished her hip-hop (pole dancing) class and had her recital. It was so fun to see her dance and due to the large, closely seated audience, I was able to leave immediately after her performance guilt-free. I am sure that all of the little dancers were fantastic and the subsequent 4 hours were well worth it.

Hip-Hop Hooray!

The last week in June Martha, me and 3 other mothers & daughters took a limo to Chicago to go to the American girl store for the day. One of Martha's sweet little friends invited us to go for her birthday. The girls thought they died and went to heaven. We ate (they ate-I watched), shopped and saw a show. I was tired by the end of the day (I did manage to have a few glasses of champagne), but no too bad.

The girls at "The Store"

My mom & I -end of June

JULY:

July started with a BANG. Mark's birthday is the 2nd and we have days of birthday fun. We had a Mark's side of the family gathering right before the 4th and then Mark & the girls went to the local parade. Once again, due to my "fragile" state, I was unable to attend the parade. (So sometimes I milk it. I rarely lay down so I have to be judicious.)

The gang at the parade

We then proceeded to go upnorth for a long week. It was an amazing week. We had some really good friends come and join us for the fourth. I had a ton of help upnorth from everyone and it was a delightful, relaxing time. We laughed and laughed and laughed some more. I think I took a large shuffle toward the light at the end of the tunnel that week. My appetite was still not great. Everything tastes different. There is not a lot out there that appeals to me and fewer things that don't give me a stomach ache after. My labs are all good, so the docs aren't too concerned.

Me & my dad (my parents were upnorth for a few)

The arsenal and the lighting crew

Lucy waiting for the show.

Grady-the best dog in the world-on the pier

The girls in their "nana" hats

Just one of the incredible sunsets we had

We dropped Martha off at camp on our way home from the 4th. She stayed for 3 days (a mini-camp) and then reluctantly came home. Next year she will go for a week and by the following year I anticipate she is going to want to go for the whole summer and be the camp activities director. Let's just say that singing, dancing, independence, whispering at night, picking out her own clothes and schedule is pretty much Utopia for Martha.

I saw Dr. Burt the 3rd week in July and all was still good. I tried yet another pill for nausea and this one seems to be working. Slowly but surely.

We went upnorth again and had another incredible weekend.

Daniels family weekend upnorth

July 25th

I hadn't been feeling great all day. About 4:30 I REALLY wasn't feeling well. Took my temp and had a fever of 103. I called Dr. Burt who immediately sent me to the local ER. By the time I got there, I felt REALLY, REALLY bad. I was dehydrated and dizzy. After answering a lot of questions, giving a mini in-service on stem-cell transplants and convincing the RN that I can indeed be on an entire bag of meds at such a "young" age, they came to the conclusion that I must have C-Diff. It happens when someone is on a lot of antibiotics and the good bacteria gets killed off and bad stuff grows. They gave me some fluids and MORE medications and sent me on my merry way.

The next 24 hours were horrible. This was by far, the worst I felt since March.

About 5 days later I found out that I had Salmonella.

I know! At that point I ate mostly yams and string cheese. (of all the things) I had actually ventured out that week and had a smoothie from somewhere other than my house. I also had a bite of a caramel apple and some tap water ice cubes. You tell me where I got it from. I hadn't eaten or cooked meat.

Give me chemo before Salmonella ANY DAY. I am so sorry for anyone who has had Salmonella and did not get the proper pity. It sucked.

Well, that little "bacteria" set my eating back. Now I become a little nervous about eating anything. Especially non processed food.

Okay. I am tired. (Don't think I am a wimp-it is midnight)

I will cover August and September in the next few days.

Thanks again for being interested.

Amy

Life in the Fast Lane

2007-05-31T14:57:00.000-05:00

May 31
Hello everyone! Sorry it has been so long since I posted. I was very busy the 2 weeks after Mother's Day and I am now trying to recuperate. Here is a brief synopsis of what we have been up to. It makes me tired just to write about all this. I wish I could say that there is nothing on the horizon but rest & recovery for me, but Martha has 3 1/2 days left of school. I really do need to figure out what cocktail tastes good to me now. Any suggestions?

May 15

Lucy and Sander

Lucy had her end of the year preschool picnic. We decided to take her since it was outside and she hadn't seen her friends for so long. She got to see her favorite person in the world-Sander Read. They did not leave each other's side. She had so much fun that we decided to let her go to the last couple days of school.

May 17
Martha had her school concert. I went with mask and gloves. It was very crowded and I freaked a little, so we left right after it was done. It was very cute and I am glad that I went. I did get some pretty long stares though. I now know how Michael Jackson feels all the time!

May 18-20

The dream team.

Willy Porter (his record label sponsored the cars & he got bitten and will be racing his car next year), Tom Porter (Mark's cohort in crime. Mark & Tom worked on their cars together. Tom even worked on Mark's car when I was in the hospital so Mark's car could be ready in time for the race. They were like 3 year olds in a candy store), and Mark.

Lucy hanging out at the track

Mark getting a hug from his biggest cheerleader

Mark coming into turn 5

Mark in his car

Mark got to live out his childhood dream and race a car at Road America this weekend. He was very zoomy and had a blast with his dear friends. He did very well and looked far fasted than speed racer ever did. (Just call me Trixie.) Tons of friends & family came to show support. I went Friday, Saturday and Sunday to cheer him on. It had been a struggle for Mark to get his car done and be gone for 4 days, but watching him and seeing his smile made it all worth it!

I am a little nervous because I can literally see the race cars in his head. He gets giddy when he talks about it. He looks at his car with a huge smile on his face and stars in his eyes.

On Saturday night I went to the ceremony part (it was outside) of a wedding of a dear friend of mine. Martha fantasizes about weddings, sketches wedding dresses and bridesmaids dresses. Play a create-a-wedding computer game. So....I took Martha with me. Well, Kari (the bride) did not disappoint. She was absolutely beautiful. Her bridesmaids were beautiful. The dresses were beautiful. Martha was awestruck. She sat open mouthed thru the whole thing--holding her breath for the "you may now kiss the bride" part. Martha was SO mad at me that we couldn't stay for the reception part (inside with lots of people and catered food).

By Sunday evening I was way over-taxed. Both girls had runny noses and sore throats and I had a sore throat and felt like crap. Luckily I had an MD appointment the next day.

May 21

Mark & I drove down to Chicago to see my MD. They were not thrilled that I spent the weekend at the race track. They decided to leave my PICC line in due to my fluctuating blood counts. My white blood cell count is down again. They are not sure why. I will still have weekly blood tests for a while. They checked some vitamin levels due to my lack of appetite and they were normal. Because I had a mild sore throat, they started me on an additional antibiotic--just to be on the safe side. (Ain't no bug that is going to live in me). I will be going back down in the next 2-3 weeks. I wanted to see Devona, who was getting her transplant the next day, but the MD's told me to STAY AWAY from her until I felt better. We had a nice visit with her Mom in the lobby.

Memorial Weekend
Memorial weekend we went upnorth. It was a little cool, but the kids still swam (for a second). Martha spent most of the weekend playing with her friend Greta and Lucy and I were caterpillar hunters. (I did the spotting. Lucy did the retrieving.) We wound up with 39. Lucy was very sad when we had to let them all go. Mark held a brief, but swift execution ceremony and mass burial. (Don't gasp too loud, they are very damaging to the trees. The next door neighbor claims to have burned hundreds.) Don't tell Lucy!

Lucy and her first "callapillar"

Mark, Lucy & Grady on the pier

Martha painting rocks

Me relaxing and reading

Back to today.....

My last blood counts were mostly up again. My hair is starting to grow back. It is soft and fuzzy--not unlike an ostrich &/or an Emu. I still have no appetite (pretty soon I will be invited into Nicole Richie's inner circle). I think it is coming back slowly but surely. If not, next time I go to the MD in a week or two, they will give me something to change that. I have had a few tasty homemade treats from some very good cooks out there. Thank you!

Devona is getting thru. She is in the thick of it and should be coming out on the other side soon!

I don't have much more to report. Please send cocktail recipes. I will need them next week--even if I have to inject them right into my veins!

Check back soon.

Mother's Day 2007

2007-05-14T22:34:00.000-05:00

Day plus 34

What a terrific Mother's Day. It was great to be at home with Martha and Lucy. (& Mark). We had a nice calm, quiet, restful day. The girls made some great cards! My mom & dad brought donuts and breakfast. Went over to Mark's mom's briefly (and stayed outside) to say hi to his mom and his sisters. Then we just hung out. Nice and simple.

As you can see from the above picture, I am still totally BALD! My mom thinks she can see some very faint fuzz coming in. She swears it looks blond. It would only make sense. If this "chemo brain" crap keeps up, I'm going to need blond hair.

For my first adventure out of the house, I went to Mother's Day Tea at Martha's school. I was really nervous about it and all the GERMS. I wore gloves and brought a mask and had my Purell in my pocket. The whole time I was there I felt like I was in a war zone, dodging bullets--only I was dodging hugs and kisses. I did a good job of keeping my distance though and I think I came out of it unscathed. Martha has a music recital on Wednesday.....we'll see about that one. Might be too close quarters for my comfort level. I am getting quite used to being at home-somewhat cagey, but I feel safe in my bubble. I just feel so susceptible in the "outer" world.

I feel like I am slowly getting my energy back and having more good days than bad. I had a few fatigue days last week, but my good days were fairly energetic. Martha only has 3 weeks left of school, so I have to gear up for that. HELP.........................................................................................

Good luck to Devona who reports to the hospital on Wednesday to start her transplant part. I will see her next week when I have my appointment and I will update again then.

Wish Me luck this weekend--Mark is racing at Road America! This is his childhood dream and he is so excited. He is hoping not to come in last, I am hoping he just crosses the finish line unscathed. I know he is going to try to be in the front. I need to get my "race car driver's wife slut outfit".

Stay tuned.

First Follow-Up

2007-05-01T19:39:00.000-05:00

Day 61/21

Mark and I went to Northwestern Yesterday for my first follow-up visit. Everything is a-okay and on track. I have been having some difficulty with two of my fingertips. Bad Raynauds. I had one fingertip stay purple for 3 days and another for 5 days and still on and off. They have added another medication to my repertoire to try to help this. Unfortunately they have not had much success with Raynauds and the stem cell process. There has been irreparable damage to the vessels. I will still have my blood drawn every week. I will have the PICC line (IV) for a few more weeks. I will go back to Northwestern in three weeks for my next follow-up.

I have felt pretty energetic the last few days. The doctor said that I can expect my energy level to go up and down on a daily basis for weeks-months. Lucy is enjoying this "new" mommy because I am just laying around the house playing with her all morning. I have perfected my robot voice as well as a few other favorite characters. We are also playing a lot of red-light-green-light. It is just my speed.

Not sure when I'll post next. Thanks again for everyone who continues to keep track!

Amy

PS. Saw Devona yesterday for the start of her harvest. She was doing GREAT with that thing in her neck--not near the wimp I was. She is still battling nausea and vomiting, but she is headed home for her 2 week break (although it sounds like she has some pretty grand plans) and will be back for her transplant mid-month. Please keep her in your thoughts.

HOME SWEET HOME

2007-04-28T15:34:00.000-05:00

Devona & me before I left the hospital

Day 58/18

I have been home for a week now. I did not realize just how much I missed my family until I actually got home. Even though I can't run around with Martha and Lucy, just being able to hear them laughing and arguing is heaven! I have only been on the computer a few, brief times, so I apologize it took me so long to get this out.

The first couple of days were a little difficult for me. It is much easier to be a patient in the hospital than at home. My mom has pretty much been here nonstop, keeping the laundry going, the kids fed and the house clean. Being the control freak that I am, I had a hard time watching her run around while I was laying on the couch. (I am getting quite used to it now. Mark said my mom runs a much tighter ship than I do.) It took me a couple days to realize that if I do too much one day, I really pay the next day. I got out for a walk the first couple of days after I was home, then came the damp, rainy days. (Just looking outside made my fingers turn purple.) I was able to get out today again and it felt GREAT! It is tough to feel so exhausted. It is not-- I got to sleep all day tired, but-- I can't take one more step tired. Taking a shower makes me have to sit down for a few. Walking up the stairs makes my legs shake. That being said, I feel pretty energized today. I may have to be scraped off the floor tomorrow, but this is the best I've felt since I left the hospital.

Thank you to everyone who has called, sent emails, food, cards, candy and gifts. The outpouring of concern and support has helped me and my family more than anyone can imagine. It is just the most amazing thing! I apologize if it takes me awhile to get back to you. (My grandmother would be horrified at how late my thank yous are getting out.) I hope I am someday able to show just how much it all meant to me. (Don't worry I won't cook you all dinner.)

I also want to thank the people who have helped with Martha and Lucy (and Mark). A big thanks to my mom (she has been unbelievable!), my dad, Mum (Mark's mom), Kathy (Mark's sister), Betsy and Sarah (my dear friends). A lot of you have left open invitations and offers to have the girls over and for that we thank you so much. You may want to continue to screen your calls!

Clinically, I am doing well. I have not had any temps. My blood pressure is good. My labs have come back stable, although I remain anemic. This is still acceptable at this point. I have my follow-up on Monday. I will let you all know how that goes.

Devona is holed up at a hotel in Chicago with her mom. She had a rough few days to start with, a bad headache, nausea and vomiting. She is as feisty, tough and determined as me, so she will do just fine. It is nice to have a kindred spirit in this whole process. Keep your fingers crossed that she harvests in one day too.

Have a great weekend!

Are You Sitting Down?

2007-04-20T19:19:00.000-05:00

Day 50/10

Last night I had the pleasure of Meeting Devona and her mom Brenda. What fantastic ladies!! They both are full of southern charm and I instantly felt like we were fast friends. Devona is just starting her journey. She is in the room right next to me. She has a fantastic attitude and lots of support. I know she is going to do just fine and years from now we will be sitting across from each other sharing a laugh and remembering "when we had scleroderma." Don't forget to check out her blog-it is quite fancy. I am so glad our paths crossed.

Now, for the sitting down news....................

I am being kicked out of here tomorrow. Sent home. Given the boot. I have done so well that I do not even have to stay in Chicago. I get to go right home. This decision had my parents in a panic and a cleaning frenzy ensued. I am told that our house smells like the inside of a bleach bottle. Thank you Mom and Dad. I am thrilled my "bubble" will be germ-free.

Speaking of bubble, just because I am heading home does not mean that I will be heading to the grocery store anytime soon. I am pretty much in seclusion for at least a month. I can go outside to walk-with a mask on-and that will be about the extent of my world. I am not supposed to have more that 2-3 incredibly healthy people (outside of Mark, Martha and Lucy) at the house at one time. Everyone should get stock in Purell, because we are about to become addicted to the stuff. (Again, this is where OCD comes in handy). I can't eat any food from a restaurant or deli. No snickering--we won't starve. (My mom knows how to cook). I can't do any gardening or cleaning for at least 3 months. (I am really crushed about this--this is where the depression might kick in). I can't swim for 6 months. I can't go back to work for six months. (Again, I am going to have to learn how to cope).

So, I am going to be strict in following these guidelines. Some of them may ease up a bit depending on how my follow-ups go. I am coming home with my PICC line (IV) and I will have a home health nurse coming to draw my blood. I have to come to Chicago frequently for check-ups the first few months.

I cannot wait to see my girls!!!!!! I do not know how I have gotten thru this without seeing them. It will be quite a surprise. They think I am coming home next week.

I will not be posting as often as I won't have much to say. (Again, I can hear the snickering). I will post updates from time to time on my progress. My skin is a little softer, but at this point, that is from the chemo. The real test will be the pulmonary function tests and CT scans to see if the progression to my lungs has stopped. Those will take place in about 6 months.

Until then, hold on..........................................................

Hold On

2007-04-19T10:53:00.000-05:00

Day 49/9

The above is a picture of me wrapped in a "healing shawl". David (see my link) went thru this whole process in Maine at Christmas time. He was the first patient at that hospital to have a transplant. That is amazing to me! His wife Robbi made this shawl. It was a wonderful surprise to receive this gift and it has come in quite handy. I thank David for being an inspiration, a guide and a pioneer. I thank Robbi for her beautiful and touching gift. I am honored to be a part of "the club".

Well, I am still neutropenic. Dr. Burt has said that my numbers should just jump up anytime now. I am still feeling pretty good and still walking a lot. Dr. Burt has said that because I have done so well, when I am released, I will most likely be able to go straight home. It looks like this could happen within a few days. I am very excited and just trying to stay the course and do as I'm told (no comments from the peanut gallery-I am following instructions). The girls think I will be home in a week and it would be so fun to surprise them early.

Devona (see link) is coming in tonight to start her whole process, so I will get a chance to meet her and her mom. I can only hope that she fairs as well. She has a new blog and I will update her link. I know I've asked a lot of you prayers out there, but can you squeeze her name in too?

Again, thank you to all of you who are sending me emails. I am getting them. It seems as though no one is getting my responses. I am not sure why, but I so appreciate all your thoughts and sentiments. Thank you!

Keep your fingers crossed. (I can almost do that already!)

Blah Blah Blah

2007-04-18T10:52:00.000-05:00

Day 48/8

Well, nothing new to report. I am still just waiting for my counts to kick in. I have put a moratorium on visitors--don't want to jinx my good ride thus far. I am finally catching up on some movies and paperwork. Unfortunately, with nothing but time on my hands, I am also very up to date on all the events that occurred at Virginia Tech. It certainly puts things in perspective. My heart goes out to all of those affected. What a wild world we live in.

To even further put my situation in perspective, I met a young girl yesterday who has scleroderma and is just starting the entire process. She has MAJOR skin involvement to the point where she is just about wheelchair bound. Her elbows are fixed at 90 degrees and she is barely able to talk due to the hardened skin. I am not sure that I was able to give her any encouragement as my skin is not badly affected. It just brought back to me what a heinous disease this is and how fortunate I feel to be here and have this opportunity. For those of you that pray, please say an extra prayer for Mary. I can only hope that her results are nothing short of miraculous. It certainly helps to remind me that others have it so much worse than I do. It is quite humbling.

I am not sure if any of you have been getting emails from me. It seems that my yahoo account is quite sporadic. I have been responding to those of you that I am getting emails from. I may not be getting back the same day, but I am trying to respond.

Not much else to report, but I guess that is a good thing!

Miles to Go

2007-04-16T15:19:00.000-05:00

Day 46/6

Well, I am doing fairly well today. I did get platelets yesterday (again, to be expected) due to my counts continuing to drop. I am still Neutropenic, so I do no yet have an immune system. My engraftment (the process after the infusion of stem cells by which the new marrow starts working in your body to start producing red blood cells, white blood cells, and platelets) should be taking place within the next 4 days.

My fevers seem to have subsided!

My appetite, although minimal, is there. (Lovin' the bland hospital food!!)

And........I have, for 2 days in a row, walked a mile. This entails walking around the unit 13 times. The worst part of this is that I have to wear a mask and smell my breath.

I have no idea what tomorrow will bring, so I am just trying to take advantage of feeling good today.

Gotta go, Gotta walk!

Rollercoaster

2007-04-15T10:23:00.000-05:00

Day 45/5 (45 days since I started this whole process, 5th day with my new stem cells)

Today is an absolutely gorgeous day in Chicago. The sun is bright and the lake is shimmering. People are out and moving around. Could this finally be Spring?

Yesterday was not a great day. I felt fairly wiped out and had a few untoward side effects from: the chemo or the antibiotics or the hospital food--not sure what one.

My fevers have gotten lower--under 100. My blood cultures came back positive for a Staph infection. This could have been in me from before or it could have come from the PICC (IV) line insertion. Either way I am on enough antibiotics to cover it.

Today I am feeling fairly good. I even walked around the unit a few times early this morning and hope to do so again later.

Hope everyone is looking at the sun (not directly, that can blind you) and taking advantage of this glorious day! I am enjoying it from my bubble.

Transplant pictures

2007-04-13T21:35:00.000-05:00

Day Zero--Awaiting my stem cells.

Ron (stem cell transporter) taking my frozen cells out of the cooler. He then gave them a thawing bath in the machine on top of the cart.

Ron and Jodi-my nurse- making sure I am not getting Marion Schnibble's stem cells. (I'm sure she is just lovely).

Dr. Testori (on the left)-Dr. Burt's fellow. He was the Grand Poobah of the birthday celebration.

Jodi hanging the cells on the IV

COMIN DOWN THE PIKE!!!

Since the stem cells are so thick, sometimes Jodi had to help them along.

The new me-sort of angelic isn't it?

Feeling Snoozy

2007-04-13T19:47:00.000-05:00

Day 41-42-43/Day 2-3-4

It amazes me how absolutely wiped out you can be doing absolutely nothing. Sorry I have been away, but there are times and days when walking over to get the computer, opening it up, and typing seems like climbing Mt. Everest. Welcome to the world of Neutropenia. It is a very slow moving world where everything seems REALLY far away and just a little out of reach. There is not much here that seems worth the effort to take on. We are a lazy people-the neutropenics. (My grandma would equate this to Hell). Our cocktail of choice is blood and I have already received 2 units thus far. We are also all extreme germaphobes!!!! Any person who comes thru my door and so much as clears their throat makes me sweat.

Anyway, I have been getting lots of Neutropenic fevers which really add to the lethargy. This is a potential side effect of this process. I usually get these in the middle of the night, and with them comes a whole lot of rigamaroll. They have to draw blood, get a urine sample and sometimes a chest xray. This would be very disturbing if I were asleep, but I CAN'T sleep. For some reason, I am not only impervious to chemo, I am impervious to any and all sleeping aids. I think the nurses and doctors are starting to label me a "drug-seeker". So, neutropenic fatigue does not at all equate to sleepiness.
They are giving me every antibiotic known to man and so far there is no specific cause for the fevers. They tell me not to worry about them.

I am going to post some pics from the transplant, so stay tuned!

Please don't get nervous of I don't post for a few days, I am probably just at the Neutropenic nightclub..................

Happy Birthday To Me

2007-04-10T16:22:00.000-05:00

Day 40/ 0

I am the proud owner of my new stem cells!!!

We had a small gathering of people for the party:
Jodi-my nurse
Mark
Me
2 docs
Ron (the stem cell transporter)

I had Willy Porter playing in the background and quite appropriately, while Ron was "bathing" my cells, "Cool Water" was playing.

It started about 2:33 and went very anticlimactically until right before 3:00.

I have been told that this is like a birthday for me, so I am accepting presents and will now be celebrating both of my birthdays each and every year-mark your calenders and plan accordingly!

I feel fantastic and will now just let my little friends do their job.

Hip-Hip Hooray!!!!!!!!!!!!

I will try to post some pics tomorrow--we have many.

Also, I have gotten lots of emails and calls and I am planning on catching up on computer work the rest of the week. Thank you for all your thoughts and words and I am sorry for the delay!

Tomorrow, Tomorrow.....

2007-04-09T21:59:00.000-05:00

Day 39/-1

My doctors are quite impressed with how I have sailed thru chemo. They think I am "impervious". I am holding my breath and hoping that things remain this rosy, but I am not a fool. (Oh quit laughing).

The last of my "rabbit" is drizzling in as we speak!

Tomorrow at 2:30 I receive my transplant. They say it will take about 15 minutes to give me back my stem cells. After this they just wait for my blood counts to drop to "0" and then climb back up. It is at this time that I am most susceptible to infections and will be feeling crummy. They told me that this will occur 5-8 days after transplant. I will probably need a blood transfusion and possibly some other blood products. Then they wait for the counts to come back to a safe zone and I am outta here. This next phase is by far the most difficult from what I am told, so we will just have to wait and see how I REALLY fare as a patient.

I am FREE- I am FREE!!!! My IV's just got capped and for the first time since Wednesday I am free from my bedside companion. This is probably just for a short time, but I am going to enjoy it tremendously--maybe go to the bathroom more frequently.

My stem cells have been frozen with an added preservative. I guess they do some cultures on them to make sure nothing is growing. That is why there was the 2 week delay between the harvest and the transplant. The theory is that I will always have a genetic predisposition to Scleroderma, but when they reintroduce these "blank slate cells", they hope that whatever triggered this disease (virus, bacteria, pregnancy, who knows) will not be reintroduced to my body.

Thanks to my Mom for spending the day with me--can't wait for the next movie! I am excited because Mark is back here and I have missed him a lot. The girls seem to be having too much fun to miss their mommy, but that is fine with me and a credit to all who are helping with them. THANK YOU!!

I have to warn my Wednesday visitor (sorry Dad), that I am going to stink. I guess the preservative that the stem cells are swimming in will be emitted thru my lungs. We may want to make it a day of minimal exchanges.

Tomorrow, Tomorrow...........

Easter and ATG

2007-04-08T22:31:00.000-05:00

Day 38/-2

Today I feel much closer to the Easter bunny seeing as how I am, right now, receiving some part of him in an attempt to save my life. All I can picture is the cute little fluffer with the bushy tail all crammed in a minuscule cage in some science lab receiving all kinds of medications that make him realize he will never again be delivering eggs! I will make sure that I let the numerous bunnies that frolic around in our front yard enjoy some fox free living!

I want to give kudos to my Easter visitors--you guys all really made my day special-it meant a great deal to me. First came Uncle Rich and cousins Jenny and Liz. They brought an Easter basket and a pie! Thank you! Next came my cousin Chris and his gal Heather and some good chuckles. Thank you!

I am posting a few pics from when my parents were her yesterday.

Happy Easter
PS My email is not working..Please use:
mimipdaniels@yahoo.com

thanks

Slump day

2007-04-07T20:20:00.000-05:00

Day 37/-3
Not too much to report. Got my 3rd round of chemo and ATG (the rabbit). I have tolerated the chemo really well thus far. The ATG, however, got me last night. I woke up with riggers (shakes) and a mild fever and I was very restless. These things were quickly remedied and I had a good night sleep.

My mom and dad were here all day, so that very nice. They fetched lots of treats for me and kept me company. I am so lucky to have such amazing parents!

I have been told that next week -once I hit rock bottom-will be trying, so I am trying to enjoy this stage of things.

I am going to put my address and phone number here at the hospital by the other links. Feel free to send stuff!

That's all for now.

XO

Moving-Poop and Stem Cells 101

2007-04-06T17:35:00.000-05:00

Day 36/-4
I have been informed by someone much smarter than me that I am on day -4. Next Tuesday is my day 0--Nadir as they call it. Then I start counting up I presume?

Today went well. I am halfway done with my chemo regime and I am receiving the ATG or rabbit serum now. I have been having some strange side effects from this drug. I am craving carrots and my nose has developed a strange twitching. I am also getting lasix---you may know this as "the water pill". Apparently peeing every 30 minutes is not quite sufficient.

I also was able to switch to a room with southern exposure. I can sit on the couch and watch traffic, see the lake and feel the city. Much better than my old room. I was going to push for the corner room, but I think my quest has ended. Don't want to be too much of a prima dona or as the nurses say "pain in the ass".

Mark left about 11:00. He was welcomed home by a sewer backup complete with pooh and paper. So, I am really happy to be here at this time. My mom is now here. And my Aunt came to see me tonight.

Now--if you don't want to read the science stuff-STOP NOW!!!
Here is a mini lesson on Stem Cells:

A stem cell is a cell from which other types of cells develop in the body. Blood forming stem cells, found in the bone marrow, give the body a constant source of new red blood cells, white blood cells and platelets that carry oxygen, fight infection and prevent bleeding. Blood forming stem cells may be obtained from three sources: marrow, circulating (peripheral) blood and umbilical cord blood-collected from the umbilical cord and placenta after a baby is born. (Donated cord blood is used mostly to treat children.)
When a patient's bone marrow has been destroyed by disease, chemo and or radiation, a stem cell transplant can provide new blood-producing cells. In a relatively simple procedure, the healthy stem cells (from the patient or a donor) are infused through a vein, where they enter the bloodstream and migrate to the bone cavities. Within a short time, the stem cells begin producing normal blood cells. Depending on the source of the stem cells, the procedure may be called a bone marrow transplant, a peripheral blood stem cell transplant or a cord blood transplant.

An autologus transplant uses the patient's own stem cells. Before receiving chemotherapy to destroy evil cells, a patient's stem cells are saved. The stem cells are then returned to the patient after treatment to supply the bone marrow with fresh, blood-producing cells.

I thought this was a fairly simple explanation. A test will follow...

That's all for now folks.

Back in the Windy City

2007-04-05T19:10:00.000-05:00

Day 35/2

I am trying to figure out how to count days. I notice that other people have been very precise and sensible. Due to the mathematical/logic part of my brain being missing--don't go blaming my partying earlier days, I NEVER had those capabilities--I am going to go from the start date for this entire procedure, March 2. That will be the first number. The second number will represent how many days I have been in the hospital this time. I have no idea how I will incorporate the days after I hit zero. HHHHMMMM.

First off, I just found out that Devona has a new blog. She is starting her whole process on April 19. I hope to meet her. She is still struggling to raise the money for her entire procedure. If you have a second, check out her blog. I will put a link to it.

We arrived at Northwestern Memorial Hospital yesterday around 11:30.
Mark and I parked our car on the 6th floor of the structure and we were waiting for the elevator. The doors opened and there stood our good friend William! (He works at the hospital a lot). I took it as good juju. Thanks William!

My first stop was back to Interventional radiology. I despise that department. It brought back bad memories from my Neck IV experience. It is highly unorganized--by my OCD standards. The nurses were running amok and talking way too loud at the nurses station (damn nurses!) And, I could hear everything they were saying to the guy next to me. This actually made me feel much better as he was about to go thru some procedure where they were going to stick some long needle into his liver in hopes to stop a bleed. All of this from drinking. More than one Dr. told this guy that this was extremely risky and that there was a high potential that he may not come out on the other side. I felt pretty trumped, and did not even dare complain one bit. My taste for alcohol may be gone for good! The PICC (peripherally inserted central catheter) line was placed in my upper right arm and stops right above my heart. It is very nice as they do not have to poke me for the millions of blood draws they do. It is fairly comfortable too!

After we left that department we then had to wait in the lobby for someone to walk us to our room. We were taken to the 15th floor and put in a room. Well, because we were spoiled with a corner room the last time we were here, we wanted one again. Fortunately, there was a glitch with the call light and lo and behold we got our corner room! Mark and I were high fivin'. About 2 hours later, the nurse came in to say we were on the wrong unit and we had to move. We went to the new unit and it was basically full. I look right out at the lovely corner room I had for a brief time. I am first on the list to "upgrade" to a room with a view. Unfortunately people are here for a LONG time and don't leave too often. We have tried to bribe some aides to take a patient for a walk and we will switch out. We are walking around trying to scope out the good rooms and assess the situation. Stay tuned for that to unfold!

Since I finally got to my room late last night, they couldn't start anything. Mark went out with our friend William and I flipped bad TV.

I have been put on some mew meds. I have to take an antibiotic, an anti viral and I will have to take an anti fungal as well. I will be on these for 6 months to a year. I am getting a blood thinner (lovenox) shot into my belly everyday. I also get fluids around the clock on top of the chemo crap. This, on top of the pitchers of water I have to drink make me have to urinate constantly!!!

Treatment started at 1am---yes am. I needed to get some potassium as my level was slightly low. After that infused, I was given a drug called Meszna. I am on this drug 24 hours a day while I get chemo. This drug helps to protect my bladder. Because of the chemo, there is a risk I can develop bladder cancer in the future. I also have to drink, drink, drink. This does not make for too much rest time. I got my first of four doses of chemo. It is called Cytoxan, same as what I got before. They give me meds so I don't get sick (Zofran 16 mg and Ativan 1mg and Decadron--for you rn's out there.) So far it has worked like a charm. I am now getting ATG also IV. This drug is a powerful immunosuppressant. I will get 5 doses of this. (Again for the RN's-- I am premedicated with solumedrol and benadryl before the ATG).

I am learning that so many meds cause very minor but very noticeable reactions. Every time they flush my PICC line with saline, I get a metallic taste in my mouth. IV ativan makes you INSTANTLY feel like slurring your words, and decadron needs to be administered SLOWLY (no one ever told me this) in order to not have the patient experience a rather powerful and uncomfortable reaction. (don't ask--just know that if you ever get this, beg for it to be given slowly!!!)

So, they usually come in to weigh me every shift. Chemo diet has NOT kicked in yet! Then in the am I have labs drawn and an EKG. They start chemo at 10:00 and the ATG around 1:00. In between those times, about 5 doctors come in with varying accents and ask ALL kinds of questions. The nurses have been fantastic--as have the aides. My one nurse tonight wound up in the ER about 4 hours into her shift. Hopefully it wasn't my millions of requests that pushed her over the edge---I mean I had to rub lotion onto patients feet, legs and butt as a nurse, I figured it was a reasonable request.

So I have Chemo and ATG Friday, Saturday and Sunday. Then I have just ATG on Monday. Then on Tuesday my counts should be "0" and my stem cells will return to me. I then stay until my counts have elevated and I am safe to leave.

I've got some great medical explainations regarding stem cells. I will post that stuff tomorrow. All is well for now.

Amy

Hair Today---Gone Tomorrow

2007-04-03T22:04:00.000-05:00

Well...................

It has been a great 3 weeks.

The timing was perfect as Martha had her spring break for the last 2 weeks. We played a lot. We went bowling, to the museum and up-north (saw maple syrup being made). We just hung out and spent a lot of time together. I enjoyed EVERY second and didn't give this whole medical journey a lot of attention.

I did loose my hair. It started to come out without much effort shortly after I got home. Mark buzzed it as Sarah and Betsy looked on. (Thanks for the pictorial Bets!) Due to discomfort, I shaved it about 3 days later. I did have to shave it again this week, but there are large sections where my scalp is totally bald. I have not lost my eyebrows or eyelashes yet.

Martha and Lucy have found my bald head to be most amusing. Lucy likes to say (in the perfect George Costanza voice), "She's BALD!" Martha loves to pull my hat or wig off and watch her friend's reaction. She likes the shock value. FYI: 7 year old girls gasp then giggle hysterically when they see a bald mom.

I go back to Northwestern tomorrow.

Stay tuned for Phase 2--The Transplant.

Amy

Pictures

2007-03-13T21:44:00.000-05:00

Here are a couple pictures from Monday-Harvest. The first is a closer look at my IV line and then you can see the collection machine with my blood flowing thru. (Me and Keith Richards!)

Tuesday: Day Eleven--Home Sweet Home!

2007-03-13T21:06:00.000-05:00

Success!!!

We started yesterday with labs first and then on to get the jugular IV. That procedure was NOT pleasant. Four shots to the neck made me a little nauseous, but I quickly recovered. I got set up on the collection machine about 12:00. The whole process was over at about 4:00. Around 5:30 we found out that they had collected 4 million cells-twice as many as needed. (They freeze the extras for me.) They then pulled the IV and we were free to leave.

We ran back to the hotel room-where I had already had everything packed up already-(You know I am OCD) and we were on the road by 7:00 and home by 9:00 pm.

I report back to the hospital on April 4th for the transplant.

I feel pretty much like normal-just a tad bit fatigued. I am thrilled to be home and the girls were psyched as well.

I will probably not post anything until I start up again. Feel free to email me at mdaniels@wi.rr.com.

Thanks and stay tuned!
Amy

Time for Harvesting

2007-03-11T21:47:00.000-05:00

After a really good weekend, I am sitting around willing my stem cells to multiply. I go tomorrow for the IV line placement and the first (and hopefully last) harvest. Mark is here and we will be at the hospital in a 10X10 room for hours tomorrow. Should be fun!!!

Keep your fingers crossed.

Thank you

2007-03-09T13:14:00.000-06:00

I just wanted to say a heartfelt THANK YOU to everyone who has helped me thus far. Thank you to those who have read the blog, inquired about my status, called to check in, prayed for me, written me, gotten me goodies, babysat me, watched my children, made Mark dinner, cleaned my house (I expect that we will get quite used to this, so be prepared), or just given me a thought. It has been truly overwhelming for me to realize how many amazing people I have in my life. Your strength and support give me the motivation and the power to fight this thing. Thank you, thank you, thank you.

Catching up: Day Eight

2007-03-09T12:30:00.000-06:00

HALLELUJAH. I HAVE A GOOD CONNECTION!
After spending some time with the hotel's help desk, I came to realize that the hotel's connection stinks. Plain and simple it is like sharing a bad dial up connection with a few 1,000 people.So, I brought the computer with me to the hospital today and I am back in the technology era!
I am going to catch up on a few things that I have been wanting to post.

TECHNICAL STUFF:
I wanted to give a small rundown of what I have been up to medically while I've been here and for my remaining days. On Friday of last week I received what is called Mobilization Chemo. I received an IV chemo drug called Cytoxan. The purpose of this was to get my stem cells out of my bone marrow and into the peripheral blood so they can be easily retrieved.

On Saturday I was discharged to my "suite". (I like to call it that because Martha thinks it's very Zach and Cody like. Only those of you with children and the Disney channel will understand this. Trust me, it puts me way up on the Mom coolness scale.) I've had to come to the hospital on

Monday, Wednesday and today for Lab work. All my numbers are doing exactly what they should be, so I guess the pharmacist is off the hook.

On Wednesday I had to start getting an injection called Neupagen. This drug stimulates the growth of stem cells. It is given subcutaneously in the belly. Sarah gave me my first ones and did a bang up job. (She's an RN, but reminded me, as she was standing with the needle aimed at my gut, that she had not given a shot in 10 years.)Bravo Sassi! Since then my mom (also an RN) has been administering them to me. I'm sure I could handle this on my own, but since I don't have to, I don't.

NEXT UP:
On Monday morning I will come to the hospital for my Stem Cell Harvesting. I will have an IV line placed in my neck where it will stay throughout the harvesting process. I liken this to a dialysis machine. My blood is removed thru the IV, processed thru this machine that extracts the stem cells, and then re infused. This takes anywhere from 6-8 hours. If on Monday they have retrieved enough stem cells, I am free to come home. If they have not gotten enough, I come back to the hospital Tuesday and Wednesday for more harvesting--all the time giving myself the Neupagen.

THEN:
I am scheduled to come back to Chicago the first week in April for the actual transplant. I will get more chemo and other immunosupressants to knock out my immune system and then they will re infuse the stem cells-just like a transfusion. I then have to wait for my numbers to climb back to where it's safe for me to leave the hospital and then I come home to seclusion for a few months.

That's it in a nutshell!
I am feeling good. Just a little tired. I have been laying low in the suite-thumbing thru magazines, flipping channels, chatting on the phone, ordering my mom around, swearing at the computer and missing my girls and husband like MAD!!!

Before and After: Day Seven

2007-03-08T20:02:00.000-06:00

I want to give a little Kudos to a few people who are a part of my very small community now.
First is Linda. She is a member of our local support group. She had her transplant in July here at Northwestern. She did really well and I had lunch with her just a few weeks ago. She was able to answer a lot of my questions and put a lot of my concerns to rest. She is a very strong woman.
A few weeks before I started my treatment I was put in touch-quite by happenstance-with a man named David. He started his stem cell journey right after Christmas. David had his done in Maine. His doctor (Dr. Traynor) worked with my doctor (Dr. Burt) here at Northwestern. David was the first person at the hospital in Maine to receive a stem cell transplant. I was able to speak with David prior to starting my treatment and he was a great source of inspiration and gave me lots of tremendous advice. He is a very determined individual and I can only hope that I go thru this with as much grace. He has an great BLOG that I will try to put a link to. David's insurance did not cover his treatment. He had to raise all the funds on his own. Cheers to you Dave.
Dave put me in touch with a woman named Devona. She will be getting a stem cell transplant here at Northwestern. She is starting her treatment in a couple of weeks. Devona is from Texas. I can only hope that things go as smoothly for her as they have for me. Like David, Devona's insurance refuses to pay for her transplant. She too is trying to raise funds. I wish you all the best Devona.
Even though I would not want anyone to suffer from this heinous disease, I feel grateful for the company. This disease has led me to some incredible people.
To all of those who have gone before me--THANK YOU.
To all of those who have yet to get here--I hope for you to have strength, courage, luck and determination.
This can be an amazing journey. It has been for me thus far.

Monday-Monday: DAY FOUR

2007-03-05T14:40:00.000-06:00

I have been having some technical difficulties with my computer, and since I am inept to start with, I cannot help myself.
It is Monday afternoon and all is still well. I am really starting to question if the pharmacist forgot to add the chemo to the IV bag. (All you nurses are nodding your head right now-you know it happens). Had I known that I would feel so good, I would have packed completely different outfits and brought extra credit cards. I can see the entrance to Watertower Place from my bedroom window.
Mark left yesterday afternoon--It was sad-like when we were dating and had to say goodbye. My mom came shortly there after and spent the night. It has been nice to have her company (and watch the progress she is making on my shrug). My friend William dropped by for a while (thanks William). He offered up lunch, but my appetite is minimal. I am not nauseous though. We shared a cab ride back to the hospital where I had labs drawn and then my mom and I walked back to the hotel. I was definitely zapped of energy by the time we got back to the hotel. It was about 5 blocks or so. It is quite blustery out too.
Betsy and Sarah (as close to sisters as I have) just arrived and we are going to have a big slumber party for the next 2 nights. We are stocked up on romantic comedies--sorry husbands.
I miss the girls like crazy, but they are being so well cared for that when I asked Martha if she missed me she said, "not really." Thank you to all who are assisting--it makes it that much easier.
That's all for now..........I have a movie to get to.

7:00 & ALL IS WELL--DAY TWO

2007-03-03T18:45:00.000-06:00

It is Saturday evening. I left the hospital around 2:00 and checked into The Seneca. So far things are going great. I am very nervous about this and am waiting for the other shoe to drop--hoping like hell it won't. Mark and I walked all over downtown and found a great restaurant for dinner. We did some people watching. We got some supplies to get me through a few days and we are back at the hotel watching TV. I feel more like this is a weekend away than some medical treatmentfor a horrible disease. I almost feel guilty. Mark keeps saying that I am jinxing myself and that come tomorrow I will be longing for today. I am enjoying it while I can!!
Please keep saying those prayers-apparently some of you are being heard!
My email is not working right now.
Goodbye for now.
Amy

CHEMO IS IN: still day one

2007-03-02T20:20:00.000-06:00

The stuff is in my system. It was rather anticlimactic. There was no fanfare, no confetti, no nurses clapping their hands and singing. When I looked in the mirror after it was done, I looked the same. I am guessing the stuff is kickin butt on the innards--that is where the party is taking place right now. I think the scleroderma hooligans are looking for a place to hide right about now. Watch out for the chemo warriors-they play for keeps.
Goodnight to all.
Amy

CHEMO FOR THE MEEMO: Day one

2007-03-02T14:33:00.000-06:00

Well--after 2 extremely busy weeks of organizing, cleaning, planning (my OCD kicked back in BIG time) and partying (thanks everyone)-I am finally here.
I am laying in the hospital bed getting IV fluids prior to starting chemo. I am weirdly excited and not at all nervous-thanks to those who have gone before me (thanks Dave). I am so ready to stop letting this be what my life is about and get on with it!
They are pumping me with saline right now--I am wearing a path in the floor to the bathroom. I should be starting the chemo within the next two hours or so. They have assured me that the pre-medications should make this an "enjoyable" experience.

We have a lovely corner room. I am looking down the street right to the lake. We are watching some snow that is moving horizontally across the sky. It is quite a serene setting.

I miss the girls like mad already, but Mark is keeping me entertained.
I will try to blog later tonight to let everyone know how chemo is going.
So far so good!
I feel strong and ready!
Amy

SPELLING

2007-02-09T16:16:00.000-06:00

My Mother just informed me that I spelled "calendar" wrong in my last entry. I wish I could blame it on my fingers, but since I spelled it "calander" throughout, that excuse is null and void.
DISCLAIMER:
If you are going to be annoyed by my spelling/grammatical errors---DO NOT CONTINUE TO COME TO MY BLOG!! (Hopefully this won't discourage my Dad.)
If you are going to feel compelled to correct my spelling/grammatical errors---PLEASE KEEP IT TO YOURSELF!!
AND......I do realize that there is a spell check for this thing, but sometimes I'm just too lazy!!
So...Have a great weekend.
XO
Amy

2007-02-08T16:31:00.000-06:00

(CLICK ON THE CALANDERS TO ENLARGE.)

Stem Cell Schedule

2007-02-08T16:28:00.000-06:00

I posted my calander for the next few months. I start the whole process on March 2nd.
I will post some more in-depth info. on what these dates will entail over the next few weeks.
I am ready to start and am looking forward to tackling this disease and getting on the road to recovery!
Thanks again for everyones concern and wishes.
Amy

2007-02-08T16:26:00.000-06:00

2007-02-08T16:24:00.000-06:00

RANDOMIZED!

2007-01-31T15:55:00.000-06:00

Well here we go---------------------------

STEM CELL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I will find out within the next few days when things will start to happen.
I am excited and ready for this.

Thanks to everyone for their thoughts and prayers. Keep 'em coming.
Amy

Insurance approval

2007-01-26T14:56:00.000-06:00

Just received a call from my insurance company---
I was approved for treatment!!!!!!!!!!!!!
Now I wait to hear from Northwestern. I do believe that the nurse in charge is on vacation until Monday--of course! (oops, I just sounded like my dad).
Amy

Waiting

2007-01-26T08:38:00.000-06:00

Waiting.....Waiting...........Waiting.............
Northwestern has turned my stuff over to their insurance department and it is in some kind of paperwork limbo. As soon as my insurance agency receives my info they have up to 5 business days to approve or decline my treatment.
I have no reason to believe that they will say no.
As soon as insurance responds, I can be randomized--find out what treatment I will receive. I will then start ASAP.
So.................it should be within the next week????
Amy

My background information

2007-01-21T09:10:00.000-06:00

I noticed that my fingers were swollen December 2003. This was 2 months after my second child was born. I chalked it up to fluid retention due to nursing. That spring my fingertips became extremely sensitive. Again, I just thought "water retention". In July of 2004 I got my first Raynauds attack. By September I had little "pits" on a few of my fingertips. I went to my primary MD and he referred me to a rheumatologist. Three days before my appointment I woke up with a start and the word "scleroderma" popped into my head. (I am a nurse and had cared for one scleroderma patient 10 years earlier. She was end-stage. Very sad case. My husband remembers me coming home after caring for her and saying, "if there is any disease I don't ever want to get it is scleroderma." Be careful what you wish for!) I went onto the computer and there were all my symptoms. Three days later, October 27th 2004, the Rheumatologist confirmed my fears. After my first PFT (pulmonary function test)I was found to have interstitial lung disease. The first rheumy had me dead by Christmas. I quickly changed MD's and here I am.
In June of 2006, my MD (Dr. Csuka at Froedrert Hospital) decided that my lung functions were bad enough that I should start some treatment. She was participating in a study called the SCOT trial. It is a randomized study where the participants wind up with one of two treatments--high dose chemotherapy once a month for a year, or a stem cell transplant. You do not get to pick what treatment you wind-up with. I started with the screening phase in June of 2006. My screening phase took much longer than usual (many glitches). If you receive the stem cell transplant, you are immunosuppressed prior to getting your stem cells back. Part of the protocol for the SCOT trial is to receive total body radiation. While I was going thru the screening, it came to my attention that radiation is thought to be harmful to scleroderma patients. (There are 2 totally different schools of thought here and data that supports both schools.) So.....I decided to persue a different study at Northwestern in Chicago. It is the same as the SCOT-either chemo once a month or a stem cell transplant. This trial does not use radiation and--if you wind up with chemo and after 6 months it does not appear to be helping, you can cross-over and get the stem cell transplant.
So now you are totally caught up.

Where things stand

2007-01-19T11:46:00.000-06:00

I have now enrolled in a study at Northwestern in Chicago.
I have undergone EVERY test possible. After forgetting to draw 3 tubes of blood from me--this surprised me since they had drawn about 20 tubes--I am just awaiting those results. All the paperwork should be in order by Monday January 22 2007. The paperwork will then go to the insurance company. They have about 48 hours to approve or decline the treatment. After this--I'm thinking end of next week--I will be randomized. This means I will find out what treatment arm I get--either chemo once a month for 6 months, or the stem cell transplant. I will most likely start treatment the following week.
I am still feeling great.
I am REALLY comfortable with the Drs and program at Northwestern. I am excited and optimistic.
I will keep everyone posted!
Thanks for checking this out!
Amy

Starting the blog......................

2007-01-19T11:39:00.000-06:00

Okay. I have decided to start a blog site. I figured it would be the easiest way for me to keep people posted on what is going on-now that I am finally close to starting treatment. Realize that both my Mother and Martha (my 7 year old) are WAY more computer savvy than I am. Don't wait to be impressed--it ain't gonna happen.