The Return of the frozen Stem Cells!

What an incredible day! I was so excited to get to this point, yet I pretty much managed to sleep through almost the entire day! What's up with that?! Well, when I first got there, Nurse Jane got me set up in bed, complete with an IV for fluid and meds including benedryl, ativan, and antibiotics. All to keep you calm, comfortable and virus free. Then she monitored my heart and BP all day. Sandy, Dr.Guegetta and Dr Sloane then saw to it that my Stem Cells (three bags - about 7 million! were slowly returned to me over the course of the day.) Unfortunately what they did not have was nose plugs for everyone in the room. I was unable to smell or taste anything at all after high dose chemo the day before, however, the entourage in my room had to bear the ungodly smell of bad roasted garlic and creamed corn... the genuine sum of my stem cells and the lovely preservative that they use to keep it safe until its eventual return to me.

I passed with flying colors! A long day and a long evening, but I feel once again complete. Now the waiting begins. The high dose chemo will, for all intents and purposes, kill off all of my current blood cells and platelets by next Thursday or Friday. However, my new stem cells will be growing slowly but surely to more mature platelets and cells to replace those that had to be destroyed. Its a delicate balancing act of science and the miracle of new life inside my bone marrow. Truly amazing part of this adventure.

I'm very tired now...and probably will be for several days (so they tell me) but I will try to keep you posted on the comeback journey. They have told me that all is going well so far and I couldn't be in better hands.Thanks for all the continued prayers and cards. They make my day!
I am going out of my mind not being able to do a whole lot other than sit around, however it seems I don't have much energy for much else right now.

Life isn't about waiting for the storms to pass...it's learning to dance in the rain. (vivian greene)

There just never seems to be a right time to blog after treatment...especially the treatments I have had the last couple of days.What can I say, these were two of the toughest days so far.
Other than getting to sport another sassy new hair cut, holding ice cubes in my mouth while being infused with a highly toxic dose of chemotherapy was the best and worst place I could possibly be. I hope you can understand where I'm coming from. The BEST place...because my entourage, including Hayleigh, walked me through the painful part by helping me to stay focused on the end result (no mouth sores), laughing and strong to the finish.I also received a 3 lb box of chocolates from my sister-in-law Deb and a huge get-well basket with movies, candy and popcorn from Beth, Dana, and Liz (the Malden girls) to look forward to  when I get home.If I could just get out of here!!

                                                
The WORST place...because I know all too well that the high dose chemo will take me to all new depths of pain, and discomfort over the next two weeks..there is no avoiding it. In truth, the healing continues and it's the only means to the end that will enable me to go on living .




But guess what...I did it! I made it through...and tomorrow is the day I have looked forward to for the last 5 months, my second birthday! Tomorrow I get my precious stem cells back. I can't wait!



Tomorrow is called Day 0. I will be hooked up to an IV and my previously frozen stem cells will be slowly reinfused over several hours. Unfortunately the preservative that is used for the cells smells like rotton garlic...for 3 whole days! I won't be able to smell it, but everyone else will (LOL!) My entourage may be bribing each other for breaks throughout the day.I'll be sure to get pics for both your and my entertainment.I'll be heavily sedated for most of it and will sleep most of the day away.But I can't miss these moments... they are priceless.

Many thanks for all of the delicious dinners that have been so graciously provided to my family in Easton. They are a life saver for those at home. Please keep sending the great jokes...they keep us all laughing, and please keep the prayers coming. He is listening...I know it for sure:)
Tomorrow is another day and we will endure!
Love, Cheryl

I have arrived!!

Chemoville...I'm here. Today is the day. In about 3 hours I will be hooked up to an IV that will give me
high dose Melphalan chemotherapy that will begin to eliminate my "Amyloid factory". Words cannot describe how I feel....nervous, yet excited to begin...petrified, yet there's no turning back now...apprehensive, yet confident in the end result...I'm ready...bring it on!

I am buoyed by the strength and support from all of you, and from my wonderful entourage who will be shoving ice cubes in my mouth while I am infused. (They need your prayers as well, because they might find themselves a recipient of a few ice cubes upside the head a few times! LOL) The ice cubes close down the capillaries in my mouth and throat so I don't get mouth sores from the chemo. Not a very medicinal approach but it works so I'm going with whatever they recommend.

They tell me that I'll be real tired later...oh good, one more excuse for another "happy nappy"! I'll try to blog when I wake up and let you know how it went.  And just think...I get to do it all again tomorrow!
Love to all,
Cheryl

Positive thoughts yield positive results!

Positive thoughts yield positive results. I'm sure of it. The last two days have been spent hooked to a Pheresis Machine that saw about 18 liters of my blood running through it, and painstakingly harvested 14.3 million stem cells from my bone marrow...that will hopefully save my life! Truly an amazing procedure and an answer to my prayers.
Frankly, other than having to endure painful Growth Factor Injections each day for 5 days, the "harvesting" procedure was quite decadent. The hormone injections helped my bone marrow produce an abundance of stem cells which then spilled out into my blood stream allowing for easy retrieval through a newly acquired summer accessory... my central line. I literally laid in bed for 2 days, with Del and Sandy by my side, hooked up to this fascinating machine - which did a lot of the work. The only thing missing was bon bons! I guess Del forgot to bring them...do I need to find another member of the entourage?? The end result was plenty of stem cells and I could not be happier right now...or as Fr. Woods always says..."couldn't be better"!

You might also notice that my hair is a bit shorter now.Yup...sister Kate got to me with her scissors! They decided that I needed to go shorter in the interim because it was getting to be too much caring for the long hair and my central line! They were right. So the other night, while my brother-in-law Mike stood by a little too eagerly with his #3 blade in one hand and a glass of red wine in the other, Kate expertly trimmed about 6 inches from my hair. Mike will have to wait another week to use his buzzer.

 I'm sure that there are some of you out there, who as you are reading this, find it very hard to believe that I am fighting a potentially fatal disease for which there is no known cause, nor cure. (Believe me..I prefer to be in denial as well!) I think the expectation is that one would look and feel sick enough to be hospitalized. The deceiving thing about this disease is that although I am sick on the inside (if only my kidneys could talk!!), I don't look that sick on the outside. OK...except for that edema from head to toe, (which can be hidden with bigger clothes!) I look as I always have. The first 8 weeks of my treatment have really gone quite well and I have been pleased not only the with the way my mind and body has tolerated all of the drugs that have been infused, injected and inhaled along the way (considering I never took anything stronger than Advil my whole life!!), but more importantly...with the results. Next week the mask will come off as I begin to show the true colors of my treatment.

More often than not, with this type of disease, (which has similarities to lots of types of cancer), although still critical in the sense of diagnosis, the treatment is done on an outpatient basis. Lots of reasons for this, but primarily because hospitals have found that over the long term treatment process (chemotherapy and other drug therapies) that patients fare much better if they are allowed to go home when not hooked up to machines, rather than stay in a hospital setting. Over the last 20 years, BU Medical Center has tried many approaches to treating various types of cancer and Amyloidosis. They have found that "outpatient" aspects yield a faster and stronger recovery. In order to be in this program, they currently require patients  1) to stay within 4 miles of the hospital (due to the toxicity of the treatment, the chance of admission is high at certain times during this treatment, as well as the fact that you have to come to the hospital almost everyday for chemotherapy, labs, monitoring, or harvesting) and 2) they require at least one other person to be by your side 24/7 for the duration of the "treatment" (as you know, I opted for an entourage just to be on the safe side). This person will keep track of  meds (which can change daily), vitals, make sure that you get plenty of rest (I am sleeping a lot!)and eating (or trying to anyway) the right foods. They are in many ways a buffer between my compromised immune system and the outside world. The "team" of doctors and nurses at the hospital is involved every step of the way as well.


With that being said...I am incredibly blessed to have the most wonderful people looking out for me...for all of the support and prayers from all of you, and for my God who is providing me the strength and courage to BE on this adventure.  I am so thankful for everyday.
Love to all,
Cheryl

Laughter is the best medicine!

As many of you now know, a big part of my Amyloid adventure has been to find humor in the little things along the way. I can't thank you enough for all the funny jokes, stories and you tube clips that are being sent  but sometimes, I don't have to look very far...
One of the "upsides" to this chemo treatment has been that we are now living in an apartment (11th floor high rise!) right in the middle of the city. Yup, three blocks to Fenway in one direction and 2 blocks to Copley Square in the other (I hear they have a lot of shoes there!!) Oh yeah...and the hospital is less than a mile away. If you love Boston, which we do, then this is the place to be. BU Medical Center requires us to live within a 10 minute drive of the hospital for this treatment (for lots of reasons which I will go into another time). We found a very nice, safe short term corporate rental with CVS, Whole Foods, and Blockbuster Video at the street level. It doesn't get more convenient than that! This place came highly recommended by lots of other patients who have made this their home during treatment because it is less than a mile down Mass Ave to the hospital, and it really offers all the conveniences that you will need while you are here. Of course finding parking in the city...is a whole different ball game.
After my first day of treatment, Auntie Del and I went on a search for a parking garage within the vicinity of our apartment. (They have parking at the place, but it is grossly overpriced!) We found a garage close by that offers "overnight" parking at a reduced rate and since we will be at the hospital all day-and just about everyday, we decided this was our best option. In after 4pm, out by 9:30am.  Except that it was now 2 pm and we had 2 hours before they would let us in the garage. We decided to park at a meter , feed it quarters and move the car in at 4 pm ...no problem, right?
We went to the apartment and I promptly fell asleep for several hours leaving Del to handle everything.(Isn't that what an "entourage" does anyway ??!) Big mistake! Del decides to go for a walk, completely forgetting about the car. On her way back (now 6:30pm) she walks right by the car and realizes her mistake as a bright orange $25 ticket  now accessorizes her car. It is then she also realizes that she doesn't have the keys. She runs up to the 11th floor, grabs the keys, runs back down and begins to move the car. She gets to the entrance to the garage... only to discover that she doesn't have the monthly pass to get into the garage...its back in the apartment! Now she has to go back to the street, find a meter, feed it a quarter, run back up11 floors to the apartment....only to remember that she had put the monthly pass on her visor in the car for safe keeping. Of course she high-tailed it back downstairs to move the car before  the meter ran out again. And who has chemo brain here??? By the way, my nap was fabulous...never heard a thing:) When I woke up from my nap and see Del standing in the apartment with beads of sweat running down her face and she told me her escapades... I was hysterical laughing. I'm still trying to convince Del that this was actually a good thing because of that. She recovered enough to make a fabulous Shrimp with Angel Hair dinner for the two of us...
distractions are good. Oh yeah...and the Celtics won too!

Little did i realize that having a non-city girl as part of my "entourage" would bring me and you such comic relief...
Some of you may remember (if you have read previous blogs) that my friend Karen drove to BU one day and while we had a wonderful time in the city, the drive to get home was more painful than the treatment itself. I thought I was just going to die when Karen rolled down her window to ask the very irate man in a truck if she could pull out in front of him...and Karen was shocked when he said NO. And I thought I was in trouble then!! If you have ever driven in this city, you know that Boston drivers and pedestrians have their own language...and it has everything to do with attitude and nothing to do with you. They are notorious for aggressive driving and jay walking. Out of state visitors are just mucking things up. Did I mention that Del is from CT??!
Needless to say, the last few days have been hair-raising for her...and for me!  Treatment-related mortality has nothing on being a passenger in the car with Del in the city! Within hours of arriving here and having to drive up and down Mass Ave several times, I was pretty sure that Del would be eating her way through my stash of Ativan in no time. I tried to explain to her on the first day, (as I did with Karen), that you don't stop and ask permission to change lanes...you just GO. She who hesitates...gets hit. Or in her case, they lean on the horn and then proceed to drive around you...showing their true feelings via their left hand! We are now on day 4 and with 8 trips to the hospital under her belt, I am proud to say that she has come a long way!  Now they are beeping at her because she's cutting them off ...and shes getting really good with her left hand!
I'm still thinking about walking...

More tomorrow on Stem Cell Harvest Results!!!
Love,
Cheryl

Stepping off a cliff...

Wow...where did the last week go?? I finished up Round 2 of my Low dose Chemo regime, with Hayleigh, Bret, and Aunt Kate in tow.It was (thankfully) an uneventful visit followed by a fabulous lunch at Flour, a wonderful bistro in the south end for lunch, only to be brought home by Bret and promptly put to bed for the remainder of the day with a massive chemo headache. I was toast. Sunday came quickly and Bret's graduation was a proud day, shared with lots of family members. Gramma Kurtz made the trip from Oregon and Uncle Jeff and my niece Anna came from South Carolina for the big event, as well as lots of local Conway's.  I love having a full house...even if I'm not feeling so great. It just makes everything better! What a terrific weekend.

The big day was not complete without a Kurtz feast of Fred's Fabulous Flank steak, Beach Party Chicken and Summertime Shrimp Scampi Skewers as well as lots of salads, desserts and Aunt Kate's famous Chocolate Chip Cookies (trust me...they are in a category of their own! Just ask the Reading, MA Youth Baseball League. She was nominated for the all star team because of them!!) The staff at the BU Amyloid Clinic was quick to remind Kate again last Friday about  the "red button" incident in hopes that another guilt trip might yield more of Kate's cookies for them.

This weekend was, in some respects, bittersweet for me. I was looking forward to it because of all that it meant for Bret and I knew that I would have a houseful of family a couple of days. I also knew that at the end of that weekend, I would be saying goodbye to family gatherings for a while (whine, whine) and that my days on Laurel Drive were numbered. The reality is that numbers will play a huge role in my life from now on.

Monday came all too quickly for me and there was lots to do to get ready for Wednesday...the first day. Phase two was just around the corner and the threshold I was on was beginning to sink in...Its hard to describe how I was feeling, but here goes...
When we were in Cancun over Christmas break, we were in a jungle, going on a tour via "zip lines". All of us were standing on a perch, high above a river. I was first in line. The tour guide told me what to do, buckled me up and told me to jump. He then moved on down the line to assist others  who were behind me. Much to his dismay, when he turned around...I was still standing there, hanging on for dear life...and very much holding up the tour! I knew this was the moment...I had to jump...(or he ...and my anxiously awaiting -and very embarrassed family, were going to push me -LOL) He assured me it was quite safe...so I jumped. What a thrill! During my first "zip" I thought...there is something sooo wrong about a 48 year old woman - upside down - on a zip line...in the middle of a jungle in Mexico! However...after my first "zip" I thought, why did I wait so long to do this! That was pre-diagnosis.
I look back on that trip and think...It was exciting because I stepped out of my box on that trip and tried lots of things that I had never done before in my life (besides zip lining)...but.it was all  unknown,  Here i am again, standing on the top of a cliff, looking down into the water, ready to take the next step, dive in...knowing that its time...I have done all I can to get ready for this moment, that as soon as my feet leave the ground there is no turning back,...anything could happen...  I trust all those around me (my zip line), and I trust that I have the strength and courage to withstand the treatment (my harness) and come out stronger (the new and improved version!)  when its over. I am fully aware of all the risks. There is something so right about a 48 year old woman having a Chemo Vacation and Stem Cell Transplant at BU Medical Center.  I have faith. But it is still something I have never experienced before...the unknown. I'm really hoping for a thrill, but I'll be (very) happy with remission. LOL!
Kinda funny...that trip to Cancun taught me a few things. Who knew? ...HE did!

I jumped...
Auntie Del (my big sister), Freddie (my love) and I began this next phase on Wednesday, together. More tests, more meetings, more doctors.
Thursday I got my central line put in (ouch!).
Today...I got Growth Factor injections, (ouch!) My bone marrow is busy making 2.5 million extra stem cells, which will save my life. 
Now, I'm tired ...going to sleep.
I have hope and faith...Tomorrow is another day. Boy do i have lots more to blog about!

Living in the moment...

Another good day of chemo-induction yesterday....complete with awesome chemo-pals, son Shane and sissy Kate - my team needs to meet the whole fam you know! (although i think there was a moment when she wished she had stayed home!)
I know that it's hard to believe, but I'm not kidding when I say that it is such a positive experience to go in and have an IV stuck in my arm for 3 or 4 hours because i know that I'm actually doing something to get rid of this disease. Although my WBC and RBC numbers are coming down, that's a good thing. Unfortunately Chemo cannot discriminate between the bad things in my blood and the good things...so they just attack everything!No worries...I'll be getting the good stuff in a couple weeks:)!

That being said...yesterday was going smoothly, chatting it up with my team, swapping recipes and weekend stories... until i got the second piece of my "cocktail". The nurse left the room and a minute later my BP dropped and I nearly fainted on Kate. It happened so fast and all i could get out of my mouth was "Kate, I'm dizzy, I think I'm going to faint...push the button...the RED one"...and she did. (I think this is when she wished she had stayed home-because not only did her BP skyrocket , but she had literally just mentioned to me how strong i looked and how well i was tolerating the treatment -LOL) Of course, in seconds the room was full of nurses and they got everything under control quickly. It definitely made for some good laughs...and now Kate is making her famous Chocolate Chip Cookies for the whole staff. ( I think i'll be fainting again on Friday!!)

Back home and feeling fine. I have 2 days before family descends on Laurel Drive and lots to do for Bret's Graduation this weekend. I can't believe he's graduating from high school! I am so proud of him. He's done so well. (pic is of Bret and his gal pal Megan at prom)
Not to worry...lots of help from steroids and family to get
everything done...and after a deluge of rain yesterday...
today is another beautiful day! Heading out to enjoy...
Cheryl