Moving in one direction, Forward....

Great news...I was discharged from the program yesterday! What a day. Del and I arrived at the Stem Cell Suite bright and early to avoid sitting in traffic. After labs and a full check up by Dr Seldin and Dr.Mehta, they confirmed my graduation.

Hayleigh made another tray of mini chocolate cupcakes for the staff. (this is the third one!) She had made a tray 2 weeks ago and they were gone in a flash, so she made another tray with 4 times as many for this past Wednesday and they disappeared in 10 minutes. So in celebration of my last day, she made even more cupcakes which we brought with us.(and no we didn't snack on the ride in!) Everyone in the Suite was thrilled of course with the "breakfast bars" and they didn't last long. If they weren't chocoholics before...they are now. (The Conways taught them a few things too while we were there!)

In some ways yesterday was bittersweet as well. While thrilled that I was being discharged, I will miss all of the new friends who have been by my side since May. I can't wait to see them again in two weeks...mmm, what should we bring them next time?? In this picture: Mary Kate, Jane, Anthony, me and Jim. Unfortunately missing from this picture are Teresa, Janet, Mona and Aura.
 
We also got a chance to visit with Brian and Tina, a new patient and his wife whom we met during the evaluation period in March. Brian is also an ironman, and ultra marathon competitor who was diagnosed with CLL and Amyloidosis. He is just beginning his Stem Cell Transplant program, and with much the same gusto and optimism as I did.My prayers will continue for them as well as Robert and Martha, Cila and Steve, as they continue on their individual journeys.

After hugs all around and a thankful, yet tearful goodbye, Del and I gladly made our way back home.
Lots of instructions to process as I begin 100 days of healing. (3 pages!)While I am recovering at home I will need to continue to monitor my temperature (anything over 100.5 requires a phone call to hematologist), my fluid retention, my blood counts, and my blood pressure. I cannot have outside visitors unless they have been immunized (no live virus'), no pets, small children, and I have to wear a mask in public places (should I even dare to venture out) to protect me from unknown lurking bacteria and diseases. The good news is that I can begin to exercise as I regain some energy (and Red blood cells!) and introduce thick skinned fruits and vegetables (Yeah!) to my diet next week (as tolerated!). I actually walked a 1/2 mile on the treadmill on Thursday and 3/4 mile Friday! I know that doesn't sound like much, especially for someone who is used to running several miles a day, but for now I'll take it. Baby steps...all the way to the finish! (I think Hayleigh is starting to get nervous...I'm not sure she really believed me when I said we would be running a marathon together someday...she obviously doesn't know her own mother!!)
Phase 3 will continue, 99 days and counting, but first I need a nap...:)
Love to all,
Cheryl

Home Sweet Home!

Another day, another milestone, another answer to prayer! Monday, day +18, we got some great news at the Stem Cell Suite. I was able to get my central line out! Yeah! Dr. Mehta made it painless! Maybe he can do my next bone marrow biopsy too!

 We also moved out of the apartment and back to Easton. What joy to be able to come home, see my kids, and sleep in my own bed. Its been a long 5 weeks. Monday the doctors told me that my blood counts looked a little better than Friday and that they expected them to continue to climb, although maybe not quite as fast as I would like. Instead of taking the journey one day at a time, they are encouraging me to take it one week at at time.
As I sat on the edge of my bed, taking it all in, there is a part of me that absolutely cannot believe all that I have come through, and how well I have tolerated everything (OK maybe not everything...but I managed to get beyond it!) Now on to Phase 3 of the treatment. The marathon isn't over yet...this is when I have to dig deep and find the strength deep within myself, trust all my treatment/training so far, and finish strong.
My fears throughout this process have been two-fold. First, my fears were related to the treatment process that I had to go through. As you have all read in previous blogs, although I educated myself about what my body would go through, I was still petrified. I learned to process each step, each day, and ask God for the courage to get through each one. And he did.
Secondly, my fears have been about the end result. Will this treatment eradicate the Amyloid factory that my body had built? Will this treatment put me in complete remission...and for how long? These are answers that I will not have for a long time. But I cannot let these fears consume me. I must continue to believe, and have faith in my strength as well as the power of Gods healing love. One of my favorite songs reminds me daily to surrender any fears I have, and trust in Him:
"Whenever God shines his light on me
opens up my eyes so I can see
When I look up in the darkest night
I know that everything's going to be alright.
In deep confusion, in great despair
When I reach out for him, he is there
When I am lonely as I can be
I know that God shines his light on me.

Reach out for hime, He'll be there
with Him your troubles you can share
If you live the life you love
You get the blessings from above
He heals the sick and He heals the lame
says you can do it too in Jesus' name.

He'll lift you up and turn you around
and put your feet back on higher ground

Reach out for him, He'll be there
with Him your troubles you can share
You can use his higher power
in everyday and any hour
He heals the sick and He heals the lame
says you can do it in Jesus' name."

Van Morrison, Avalon Sunset 

Tuesday, Day +19, Del, Fred and I returned to BU Med Ctr to attend the Amyloid Support group. This was a great opportunity to meet and talk with patients who are at the beginning of the process patients who have been through the process, and even those who have been through the treatment several times. I look forward to attending these meetings if for nothing else than to give others hope and strength as they move forward through the treatment process. But, it was so great to return home and have a happy nappy on my own couch! Not much energy for blogging...very tired

Yesterday, Day +20, we returned to the BU Stem Cell Suite for more labs and follow up care. Although still very weak and tired, I returned feeling renewed and more refreshed after sleeping in my own bed for 2 nights. More good news...I am being discharged from the treatment program on Friday. Yeah! Although I will be coming in for follow up visits periodically. I will not have to come in daily. I will be continuing my recovery at home, monitored by my local Hematologist/Oncologist, who will be in constant contact with my team at BU. Slowly but surely over the next couple of months, I will regain my strength (as well as my hair I hope!)
For the next 100-120 days I must continue to be vigilant about germs, bacteria and diet. This is the crucial period during which my numbers will continue to improve. Lots of discharge instructions from Anthony, for me and my entourage.I'm all ears:)

Patience...breathe...pray...and grow.

Time for another nap...
Love to all!

Welcome to 7 EAST!!

The adventure continues....So I guess its pretty safe to say that I still haven't wiped the smile off my face since last night. I was really actually looking forward to returning to the Stem Cell Suite today to reconnect with all my friends and caregivers. These wonderful people become an extension of your family in no time.
Del and I returned to the hospital today for what we are hoping is one of the last times. I almost cannot believe it. I am now Day+15. An easy day by this past week's standard.
Speaking of last week, I guess it's only fair to continue where I left off last night.(see previous blog)...

Although my little "detour" is well behind me now in terms of time, it is still something I must think about everyday because I still have so much time ahead of me in terms of waiting for my new blood to mature enough to protect me from bacteria (or anything else for that matter) before I can resume my "life".
When we left off yesterday, I was finally admitted to the hospital and they took us up to 7 East, the hematology/oncology floor. We were ushered into the room by Molly who would be my nurse throughout the night. I could not have been in more capable hands (by the way Mayo's...she hails from Cincinnati!) I was absolutely exhausted at this point and wanted to do nothing more than just go to sleep.
I have not spent many nights in a hospital other than when I had my children so I really don't know what to expect....other than sleep. Sleep is after all so important to people, especially sick people. It allows the body to rest and is crucial to healing. However, someone forgot to tell this to the folks on 7 East @ BU Medical Center!  After getting settled in my room, Del returned to the apartment and Fred attempted  to settle in to a recliner in the middle of my room. It would not be for long. As my fever continued to come and go all night, the wonderful nursing staff monitored my vitals, cultured my blood, (I tried to tell them I had plenty of culcha...but  they did it anyway!) and made me as comfortable as possible. In other words, they took wonderful care of me...but sleep was elusive. One thing became very clear to me though. This is exactly why BU Medical Center's Stem Cell Program has been so successful when done "outpatient ". A lot of folks were surprised that I would not be hospitalized for this whole treatment program. BU has always maintained that patients recover faster when treated outpatient, rather than having to stay in the hospital for a couple of weeks. They have years of research to document this. Makes perfect sense now! The hospital is always right here if you need it, (as I did) but you are much better off going back to your own place each night to rest.

Monday, Day+11 came very quickly and the monitoring, culturing ....and fevers continued. I was able to catch a few naps throughout the day which was refreshing. Doctors still couldn't find the source of the fevers but put me on a very intense regime of antibiotics in an attempt to "stem" any infections. Now in case you didn't already know...besides a research mega center, BU Medical Center (also called Boston Medical Center) is a teaching institution. Fabulous right?? Absolutely, except when you open your eyes in the morning, and you are looking into the eager, stethoscope-ready  faces of 20 residents, medical students and fellows...and you haven't even done your teeth!! I wanted to crawl under the covers until they all went away!
The best part of my first day came shortly thereafter when a gem named "Teresa" waltzed into my room. Teresa introduced herself  and announced she was my "hospitality assistant" for the day.! I thought WOW, I could get used to this! Teresa's job was to keep me fed and nourished during my stay. She would make me anything I wanted as long as I was there...neutropenic diet of course. Unfortunately for me, I really had no appetite and everything tasted like cardboard or metal. Plus my fluid retention was getting worse by the hour so I was very uncomfortable. Scrambled eggs were (and are) becoming my best friend.

Tuesday, Day +12, the fun continued, same routine, different day. I was very weak, very warm, very swollen, and now covered from head to toe in a lovely rash!! Overnight my body began to develop an allergic reaction to the antibiotics they gave me. And fortunately for you...that is the only reaction that I am able to blog about...if you know what I mean! (TMI- too much info!) On top of all of the above....as my Hematologist, Dr. Seldin was examining me first thing that morning...he very nicely says to me..."you know your hair is falling out, right?" And sure enough...there it  was...all over my pillow...you were right, Anthony...it was ALL coming out! (While I was able to hang on to my hair than longer than I originally expected, I was ready for this side effect and it was the least of my worries! Nothing a pretty head scarf can't handle) But my numbers were not improving as fast as they wanted so they decided very late in the day to give me a boost with some red blood cells.  I attempted to sleep...with no more answers than when the day started. To say this was testing my patience would be an understatement! LOL! I felt like I was going backward instead of forward...(Can I please go home???)
 

Wednesday, Day+13, Today was literally a breath of fresh air. Besides the Starbucks coffee that Fred brought me at 7 AM, I awoke today with my body feeling the boost of fresh oxygen from the blood they gave me throughout the night. However the fevers continued...and so did the testing. (We are here to find answers after all)  Now I am well aware that when you "culture" blood,  you have to give it time to grow, but here I was day after day, laying in bed, getting more bloated (I never said "super-size me"!!), redder, and increasingly frustrated. At 5o'clock I decided to do some laps around 7 East (complete with my mask, my ever-so-lovely hospital johnny and Del by my side. We got to lap 18 and I decided to try to make a getaway from the ward.  When I felt that Del's attention was diverted, I made a bee-line for the elevators, and guess who is walking towards me...Fred! Bagged! They dragged me back to my room and put me back in bed. Can't blame a girl for trying! 

Thursday, Day +14 We began the day much the same as the day before...including the Starbucks Coffee! I was really feeling pretty good and had slept a whole 4 hours during the night!When the doctors came in for rounds I was very hopeful that they would see things my way this time. You see...not everyone has an entourage like mine but I was determined to convince them that we could manage this whole fever thing on an "outpatient" basis and that lying around all day in a hospital with lots of really sick people was not contributing to my progress. Needless to say, I presented my case to them and thankfully they agreed with ME. At this point since all of my blood cultures were coming back negative, they decided that the infection causing the fevers must be viral not bacterial,and that this pattern could continue for several weeks. (!!) They also took into consideration the fact that I had the entourage of dreams (Del & Fred are the talk of the stem cell suite- if only everyone could have caregivers like this, it would make their jobs so much easier.) So at 10:30AM  they told me I would be discharged today with strict instructions for fever and rash control, etc. So Fred and I set about pulling all of our belongings together to get ready to leave...I am ecstatic! Around 11:30 AM, we call Del, who is now enjoying a well-deserved day off: power walking the Esplanade, shopping and reading to let her know that we will be returning to the apartment at some point, and that we were waiting for them to process the paperwork. Now remember...I already told you I haven't spent much time in a hospital...so when they said they had to do some paperwork...I'm thinking "discharge instructions". By 2:30 PM I was starting to get a little worried. They kept coming in to do my vitals. Mind you...Me, my port and I were sitting on the side of the bed, fully dressed to go, with a pen in my hand. (Just how much paperwork is involved here??) Fred was trying desperately to keep me calm, but I was getting a little nervous that they had changed their minds and that they had found something in the latest blood draw. Besides, my nurse Kim had made the comment that morning.... "I hope its before 3 o'clock". How long can this go on you ask??? At 5:00 PM I am beside myself and no one had come in to let us know anything. Kim continued to tell us that the doctor's paperwork needed to be completed. At 5:30 PM...7 hours after they have told me I would be leaving, Kim finally came in with the "paperwork". I could have cared less what was on those pages! I signed the last page and Fred and I practically ran down the hall for the elevators. Free at last...free at last! (a glass of wine would have come in handy right about then) But I had to settle with whining instead !
Now before I end this, I must tell you that my care on 7 East was exceptional. The nursing staff, aides, hospitality assistants, etc. were truly caring and professional. They made my stay (hopefully my last!) the most comforting I could have possibly have asked for and I am lucky they were there for me.
As Paul Harvey always said..."So now you know the rest of the story...".
I feel like I am finally moving forward....excited to be back at the Stem Cell Suite and definitely ready to finish this treatment program. I miss my kids terribly and cannot wait to move back to Easton.
Del and I had a wonderful reunion on Friday, Day+15 with Jane, Jim, Mary Kate, Teresa and of course, Anthony, and left with improved blood counts in hand, Rx instructions for the weekend, and great hope for Monday's appointment.

I know this chapter of the blog is long, but I wanted you to know that all is well...I am strong and ready for the next phase. I could not have come this far without all of you! The cards, letters, prayers, emails, and blog comments keep us energized and laughing. It is so comforting to know I am not going through this alone...that you are along for the ride!

Have a great weekend!
Love, Cheryl

Heartbreak Hill Ahead

Hello again...let me begin by saying that I am really sorry that I have not been able to blog for a while.I neglected to give my entourage "blog access" (this could have been subconscious on my part). I was always going to show them how to do it, just in case , but really thought I was always going to be strong enough to do it myself. Chalk it up to being optimistic. I just returned to the apartment after 5 days in the hospital. I have soooo much to tell you. I have just had a warm bath and am relaxed and happy. I feel good. Del is trying to entice me with decadent neutropenic food so I will keep this brief for now. Here's how it all started...

I always knew this journey was going to replicate one of my marathons...I just wasn't sure which one. Now I know. Boston  Throughout this process in my heart I always knew there was a strong possibility that I would end up in the hospital for a period of time, but I also was very determined to belong to the small percentage of patients who never had to become "inpatient" (and this surprises you??) Unfortunately I hit Heartbreak Hill Day +8 on Friday. We are all in the stem cell clinic and my insides were on fire, I have lots of pain and abdominal distension, my legs look and feel like tree trunks (severe edema), and my feet burn every time they hit the floor...(you cant' believe how similar this is to the actual race!!). All day I cannot get comfortable.They do lots of tests and cannot determine the source of the pain. Side effects like this are fairly normal (and expected) at this point in the treatment. OK...so it was probably one of my worst days so far. Breathe....pray....breathe....pray. They send us home at 5:30 with strict instructions for monitoring (like you had to tell my entourage that!!) and we went back to the apt.  It was a very long night but I woke up Saturday feeling somewhat better...I take a deep breath. It is now Saturday, Day +9. We go to the hospital for my Growth Factor Injection and some platelets. Breath....pray......breathe...pray. I have a good day, still uncomfortable (fluid balance is way out of whack), but pain is gone and I am actually starting to feel stronger. I've almost made it to the top of the hill, through the most crucial days of this process. Sunday Day +10, (I think I can see the gates at BC!) I woke up feeling even better than Saturday. Its July 4th. Del and I go to the hospital early (just a quick growth factor shot today-Yeah), anxious to put this aspect of the day behind us. Fred has come in from Easton to switch off with Del for the day, and Del and Steve are going to spend the day walking around town and enjoying the July 4th festivities. (can I please go????!!!)
My plan is always of course to just be right now, but I was excited for them to go exploring and enjoy the beautiful yet very hot day in the city. I'm going to take a warm bath, have a nap, read, relax and just be. So Fred and I are relaxing in the apartment (world cup soccer anyone!!!), I had my bath and laid down for a little happy nappy about 2:30.  When I finally woke up about 4:30-5 from my nap, Fred came in to check on me and was immediately alarmed when he touched my face. He had the thermometer in my mouth so fast I didn't even have time to protest (OK so sometimes I gave them a little push back! Did they really think I was never going to give them a hard time??)
Now at this point I should probably tell you that part of the "strict instructions" are that if my temp should ever reach 100.5 that they should call the hematologist-on-call right away. When Fred pulled the thermometer out of my mouth it read 101.5! He runs to get his phone while I try to untangle myself from the covers I have been under. Of course I try rationalizing the situation by telling him that I probably just need fluids and that I must be that warm because I was under a cozy blanket and I just need a few minutes for my body to adjust.(no way..I'm not going!!) Fred is of course having none of this and is running around the apartment putting things in a bag. I am sitting on the bed drinking my water and trying to stay calm while we wait for the hematologist to call back.  After about 10 minutes the hematologist calls back and says we should head into the hospital...news I am not very happy with (remember....I was never going to be "inpatient"!) Fred takes my temp one more time as I am angrily throwing some things in a bag (why prepare in advance for something that is never going to happen right)....It is now 101.9. Out we go...Fortunately for us, all of the state police are lined up along Mass ave in front of Symphony Hall to escort the Boston Pops to the Esplanade for the big July 4th celebration. Sensing that they were just a little "preoccupied", lets just say it took Fred less than 3 minutes to make it all the way down Mass Ave to the BU Emergency Room door. We get inside and find the triage nurse who once again pops the thermometer in my mouth...103! I'm kinda not feeling so good right now....can I stop running now???
I have so much more to tell you, but my bed is beckoning me...I am soooo happy to back here tonight. Breath....pray....breath...pray

Love to all,
Cheryl

How many days have gone by???

I can't believe its been 7 days since I got my stem cells back! Where have i been? Oh yeah...in healing mode ...and in a well prescribed regime of anti-nausea, anti-viral, anti anxiety (what ever would make them think I would have have that??) meds that have allowed my body to rest, relax, and begin to slowly decompose from the inside out. This is a good thing remember:) As of today the high dose chemo has erased my blood cells to nadir...0.  No WBC, barely any platelets (although they did give me a boost of 2 beautiful red bags yesterday) and RBC almost non-existent. Yet here I am blogging for a few minutes because if I don't do something, Del and Fred will make me walk around, or breath in and out of my "incentive spirometer". They want me to breath in and out of this machine 10x per hour to keep my lungs inflatable. How sweet...and full of incentive!
Now for the next couple of days I have to be very careful so as not to expose myself to any bacteria, any spike in fever is a bad thing and it means I end up in the hospital. Not gonna happen on my entourage-watch...i can tell you that! Freds got that sterile thermometer in my mouth every hour.
Del got to return to our home for a day to regroup with the boys and do some girly stuff with Hayles. In fact I think they both got their hair trimmed today! Not that Im jealous mind you...other than they probably got to go out for a fab lunch too!
No pics for me to post today...not because I've lost anymore hair, just because
I'm too damn tired to download the camera. I spoke with Anthony about that today as a matter of fact. This morning I was quite proud of the fact that I'm still sporting my Annie Lennox-Hallie Barry doo, but he smiled as nice as could be and said that by this time next week I would probably be more accepting of my hats and scarves:) I told him...just as sweetly, that my hair follicles are probably as stubborn as I am. We laughed...
as we often do.
Tomorrow will be another wonderful day with the staff at BU Medical Center. I am so lucky to have them in my life!
Love to all,
Cheryl

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