Meeting David, my donor…my hero

It was a week ago today that I was given the opportunity to meet the man who gave me a second chance at life.  There is so much I could talk about regarding Matt and my trip to Austin to meet David and his family at Austin City Limits Music Festival; I have no clue where to begin!  It is hard for me to describe how truly amazing it was!  David and I hit it off instantly.  Matt said it was amazing to see how quickly we talked as if we were brother and sister.  I was anxious to meet him because I didn’t know how it’d all go.  You hope it’ll be easy to talk to your donor; this exceeded my expectations.  In fact now having met him I think it will be a lot easier from here on out to talk.  Before we met I had so much to say and ask but no clue how I would do it.  Now it’s like talking to family!

Matt and I landed in Austin last Thursday afternoon, checked into the hotel, cleaned up and then headed to meet with the Red Bull team to film my interview portion of the segment.  I was a bit tired from traveling but we got through the interview (baking in the Texas sun) fairly quick once the setting was chosen.  The director, George, wanted me to elaborate on the inappropriate jokes when I mentioned humor.  Inappropriate humor was one of the main ways how we got through my hospital stays but I couldn’t do it…needed to keep it PG haha ūüėÉ Once we were done filming, Matt and I went to Lamberts Downtown Barbeque and ate at the bar, enjoying good food and local beer.  We were both getting antsy to meet David, it was really all we could talk about!

Friday we were driven in to the production trailers for Red Bull to get our “crew” passes for the festival and given meal tickets to use in catering.  These passes got us access to most areas behind the scenes which was pretty cool.  We spent most of our weekend in this area outside the general festival grounds called the Artist Lounge hanging out with David and his family and friends (more on that later!).  Not thinking about Texas weather and how I shouldn’t get too much sun, I didn’t bring a hat.  Dr. Chen would be proud of Matt for scolding me on that one!  Matt and I had time to kill before they filmed the first time David and I met so we walked around the festival enjoying music and the vendors, one of which is where we picked up a new hat for me.  

 I also captured a pretty cool panoramic photo that didn’t really show how many people were at the festival or all the different stages but does give you an idea of the venue with the Austin skyline in the distance!  It was such a cool festival and tons of people!

  We were scheduled to meet David that afternoon at 3:30 but I got a text from the Red Bull team postponing it until 5…I was so anxious at this point because I just wanted to meet him already!  I felt like we were enjoying ourselves but by having to wait to meet him, our minds were focused on that more than enjoying the music!  It was about 4:30 when we were listening to Billy Idol that I couldn’t wait anymore and told Matt we should head over to the meeting place.  Tronica (the Red Bull producer) saw us and said she almost texted to tell us to not be early because she figured we were excited.  Lucky for them we walked right by the press area and didn’t notice them in there filming David’s interview so the meeting wasn’t ruined!  After a little more waiting the time had come for us to meet!  Instead of describing it I will post the Red Bull video here… http://aclfest.redbull.tv/video/AP-1JYTGBCS91W11/acl-cares-austin-city-limits-2015 Red Bull did a phenomenal job putting the piece together…get your tissues ready for the emotion! ūüėā

After meeting David, you will see on the footage we met his mom, Carmen.  It was nice hearing her story, getting to learn about how well she is doing and how David got onto the registry.  What an incredible woman!  From there we began to meet all those closest to David.  I cannot begin to list everyone we met, it was fantastic!  We spent most of the weekend with David, his mom Carmen, dad Ken, girlfriend Ryley, and her dad Logan.  We met his work crew and brother, Brian and some of his friends too!  It was phenomenal…I don’t know how else to describe it!  We enjoyed music all weekend but mostly spent time with David, family and friends; that time with them was most important to us!  I will have to credit the remainder of the photos to Carmen and Ryley…

   David, his parents Carmen and Ken, Matt and I

 Chatty chatty Amanda! Mind you this was the night we met and I had a lot to say!

   

 I kept wanting to just hug him, lol…lucky for me he didn’t seem to mind! ūüėÉ  Matt and Ryley kept joking that they can’t be jealous of the connection we have…he is family is what that is! 

    
   Full circle for Carmen!! Now who among my family and friends gets to donate to complete my circle?! ūüėÉ if you aren’t registered, let me know and we will get you swabbed and on the registry! 

   
 Enjoying tunes with Logan and Ryley!

   
 

Something I didn’t mention was that a local news crew stopped by the LHS booth to do a segment where they interviewed me.  Like all news reports, it wasn’t completely accurate but the good thing that came from it was the following day people went to the booth saying they saw the segment and wanted to join the registry! That is what matters! http://www.kvue.com/story/news/local/2015/10/03/donor-meets-woman-he-saved-acl/73318740/

Lastly, it was bittersweet for Matt and I to leave Austin.  We didn’t want to say goodbye to David and the wonderful people we met.  With that said, we know it won’t be the last time we go to Austin!  We now are blessed to have family there!  I think the next trip we are hosting so David and Ryley can visit us in Maine where we can introduce them to our family and our neck of the woods!  We love you guys!  Thank you all for the hospitality and thank you to Red Bull, C3 Presents, ACL, and Love Hope Strength for an amazing and unforgettable weekend!

No news is good news!

Well seeing that I last posted at the end of February, it is clear an update is needed. In this case my lack of news is good news. I’ve been so busy that I haven’t had time to post!  With that said there are so many things that have happened that I would like to update you with.

A big part of why it’s been so long since I posted is because I am doing great and have been busy with so many wonderful things! After my last blog post I focused on finishing my Ph.D thesis…OMG that thesis is a book! Being a researcher of AML and having beat AML, I included my blog posts as my final chapter of my thesis to really give the reader insight into the patient side of the disease. Because I successfully defended my thesis this past spring I was able to walk in graduation.  I didn’t have a ton of hair but enough that I don’t think I looked completely foolish with the graduation regalia on!   

 May 29th, we celebrated my 1 year anniversary of my bone marrow transplant and the way I look at it is my other birthday…my second chance at life!  Earlier in the month I went for my 1 year checkup and final bone marrow biopsy. Everything looked great! No sign of cancer and my donor’s marrow has completely taken over for me! In terms of my health I’ve been lucky that I haven’t really had any major complications, no GVHD or any big colds.  I’ve been getting revaccinated for all my childhood vaccines but there are some I am still not covered for because I have to wait till I am further out from transplant.  I am only on one medication and that is my anti-viral medication. Besides that, I am doing fantastic! At my 1 year appointment I signed the release forms to release my information to my donor!

June 13th, two years from the day Matt and I met on a blind date we got married! It was perfect! We got to celebrate with our family and closest friends. It wasn’t just a celebration of our marriage but it was a celebration of what’s been given to us because of my donor.  Matt and I are able to build a life together because of my transplant. My dad had gotten up and thanked everyone who came because of their support during our battles with my cancer diagnosis, it was an emotional but joyful day. Our maid of honor and best man speeches were awesome! One thing Kristal said that has really stuck with me was something along the lines of how normally this is the time that she and our guests who are married can offer us advice to a long, happy marriage but she said that everyone should learn from us because we’ve already been through more than most couples ever have to go through in their marriage. We survived cancer together; we can survive anything!  

   
Matt and I decided for the honeymoon to not fly (mostly due to my reduced immunity) so we chose to road trip it.  We wanted that windshield time together! It was awesome! We explored on our way down and back to Tennessee. The first week we stayed in Nashville at the Opryland.  What a splurge and my goodness what a place! So many highlights from that week! I think the one thing that even topped Garth Brooks and Trisha Yearwood surprising everyone when they showed up unannounced at the Opry was when Matt and I were sitting on the third floor of Honky Tonk Central.  We were sitting there mid-afternoon enjoying a local band and some beers when I looked at my phone and saw an email. We quickly realized it was my donor, David, emailing me! I sat there in awe for a moment because I hadn’t heard he had signed his release for us to have open communication.  Since that day we’ve emailed back and forth a bit to get to know one another and our stories.  I learned that David joined the registry at the Austin City Limits (ACL)  festival through the Love Hope Strength Foundation just months before he was matched to me. His mom received a transplant from her brother a few years earlier and it inspired him to sign up in order to pay it forward.  It was actually his mom that got to swab his cheek for the registry since she was volunteering at ACL. It has been fun learning about their side of the transplant. Hearing from David was like a wedding present! The second half of our honeymoon was spent in the Smoky Mountains in Gatlinburg. It was beautiful and a nice way to relax and enjoy ourselves. 

This summer we spent a majority of our time on our land in Bowdoin clearing for our dream home we are planning to build next spring.  The lot looks awesome after all the work that has been done! Big thanks to those who helped us!  Matt and I also got a fur ball of a wedding present! My brother Sean and his girlfriend Morgan got us Ruger, the most adorable black lab. We love him. He’s very smart and so far has been very well behaved. The few health related pieces that I’ve had go on this summer is that we’ve been to a fertility specialist. In the past if you’ve read my other posts you’ll recall my mentioning that I was warned the chemo I received could cause infertility.  We’re currently working with a specialist to find out what my status is. Matt and I are hopeful. We both want children and I would love the opportunity to carry our own child. Time will tell, but the doctor told us when Matt had said “sounds like we aren’t hopeless” that she isn’t in the business of hopeless, so to keep positive.  The other piece was last month I hit another milestone – early September I had my port removed! It signifies a closing of this chapter. I am ready to move forward.

Today I write to you from 20,000 feet (or so) of elevation! We are excited to share that we are flying to Austin to go to Austin City Limits to meet David and see where he joined the registry and ultimately got matched to me. We got invited by Red Bull Media House to do a segment on ACL Cares for the Love Hope Strength Foundation – what a gift they’ve given us…how cool of a way to meet your donor!?  I’m a bottle of emotions to be honest. It is crazy to think that tomorrow I get to meet David. I am probably going to cry.  It’s a surreal and crazy feeling knowing I get to meet the guy who gave me my amazing life. If it wasn’t for him who knows where I’d be today. I am at a loss for what more to say…I guess for now this will have to do. I will try to update when we return from Austin to let you all know how it goes! 

 

New Medications

Last week I had another appointment at MGH. ¬†From that we learned a few things…
1. The test for CMV (cytomegalovirus) came back negative Рif it had been positive we would have been changing my anti-viral to something new.  They wanted to test it again because one of my earlier tests for it showed low levels but this time it was negative so we are all set there!

2. I have a vitamin D deficiency. ¬†Normal range starts at 32 and I was a 12. ¬†This could be a combination of winter in the Northeast and my transplant so for the next 8 weeks I take one pill weekly of 50,000 units of vitamin D3 plus 1200mg of calcium daily. ¬†It was quite annoying that Hannaford didn’t sell a calcium only supplement. ¬†All their supplements had vitamin D added to them and I shouldn’t be taking more than prescribed so luckily CVS had one bottle among all the calcium supplements they had. ¬†After the 8 weeks I will no longer have a prescription for vitamin D but will need to switch to an over the counter 1,000 unit vitamin daily with the calcium. ¬†

3. I’ve been dealing with this never-ending cold for about three weeks now. ¬†I will go for a few days of things being good, barely any congestion or coughing and then I’ll all of a sudden be back to lots of congestion that brings on a cough. ¬†On Friday, Jess had said if the cold looked like it was coming back to let her know so I did last night since I felt like I was dropping back down to not feeling great and she is now prescribing a 7 day script for antibiotics to get rid of this once and for all. ¬†

So for now it means more pills…annoying but necessary. ¬†Otherwise, things are going great.¬†

A year ago today I got my cancer diagnosis…

It is hard to believe that a year ago today I was told I had acute myeloid leukemia…the same cancer I research for a living and yet it is also hard to believe it has ONLY been a year ago today. Given everything that has happened it just seems in some ways that it was so long ago which I guess thats probably a good thing, it means I must be feeling good if I think it was so long ago this all began. I count myself lucky that I am well past chemotherapy and my bone marrow transplant and that I am on the road to recovery. I feel great. Sure I’ve got a cold right now that is taking a little longer than normal to kick but that is expected with a new immune system, it’ll get there. I don’t feel terrible by any means but I am stuffed up and have a cough every now and then. More annoying than anything! I know I am feeling better because I’ve felt great every time I’ve gone skiing this year. Oh how wonderful it was to be on the slopes again! Even better that we’ve had such a good winter of snow…the skiing has been awesome! ¬†

This past month I had an encouraging conversation with Dr. Chen about my future as a potential mom (pending I have viable eggs still). ¬†Initially we were all under the impression that I couldn’t even think about having children until 5 years in remission because that was what Dr. Rausch had told me very early on in my treatments. ¬†Course I was also warned I may not have any viable eggs after all the chemotherapy I go through so it’d be a moot point I guess. At my appointment Dr. Chen had asked me some questions that opened the door to ask about fertility and he said around my one year appointment he could refer me to a fertility specialist to see if I can still have kids and that I didn’t have to wait 5 years, we could plan to have kids anytime after my one year (again all hinging on if I have viable eggs). ¬†This was news that gave us some hope and got us excited for what is to come. ¬†We are hopeful. ¬†Besides that, my appointments have been¬†good, everything is on the right path. ¬†Still no GVHD symptoms so thank goodness for that. ¬†Even Dr. Chen admitted he thinks I got the trial drug. ¬†All in all, things are going really well. ¬†Finalizing my thesis defense, planning a wedding, and getting excited about building¬†Matt and I’s¬†dream home in the next two years! ¬†Life is good!¬†

Merry Christmas & Happy New Year…7 months out!

Long, long overdue…

Hopefully everyone had a wonderful Christmas. ¬†We celebrated Christmas with Matt’s side of the family the weekend before and then my family went to my parents camp near Sugarloaf for Christmas. ¬†The only way it could have been better is if the weather had cooperated and we were able to ski instead of having rain. ¬†So much for a nice white Christmas! ¬†Now that Christmas has passed, I am more than ready to say goodbye to 2014. ¬†It has been a rough year but also filled with many amazing moments. ¬†I am ready to start a new year fresh and lead a healthy and happy life! ¬†2015 is amping up to be one heck of a year…I cannot wait to marry Matt!¬†

As of yesterday I am 7 months out from my transplant. ¬†It is sort of crazy how fast it has sort of gone by. ¬†I’ve been extremely lucky (keep knocking on wood!) in that I have had virtually no symptoms of GVHD (graft versus host disease). ¬†My medications have dropped down to practically nothing. ¬†I will be taking a daily antiviral for about a year and Monday/Wednesday/Friday a high dose antibiotic for about a year as well. ¬†I’ve also added a biotin supplement to help with my hair and nails since my nails became super thin during treatment. ¬†Early this fall I got the flu vaccine but it has as many know already been reported to be less effective than usual and there have already been many cases of influenza and norovirus being reported across the state. ¬†I will have to be very careful through cold and flu season to not get sick. ¬†So far, I have only had a little head cold after Thanksgiving – again, keep knocking on wood! ¬†I’ve also started to get revaccinated for my childhood vaccines. ¬†I got the first dose of Prevnar (pneumococcal vaccine) last month and will be getting my second shot of that vaccine next month. ¬†A lot of my vaccinations will come at my one year anniversary. ¬†I still go to Boston to see Dr. Chen or Jess monthly and alternatively go to Lewiston to see Dr. Rausch monthly so I am at the doctors every two weeks still. ¬†I went to the dentist finally and they were extremely happy with how improved my mouth looked since the last time they saw me my gums were extremely red and irritated. ¬†It was good to know the problems I was having were from my leukemia as well as treatments and that things are now¬†improving. ¬†Because I have a port I was required to take a high dose of Amoxicillin prior to my dental appointment and anytime I go for future appointments while I have my port I will have to continue to take Amoxicillin beforehand. ¬†Also, this month when I was down in Boston I was required to go for a pulmonary test to be sure my lungs were not damaged during my treatments and thankfully I was told everything looked great. ¬†Normally, Dr. Chen said he would be sending me to all sorts of specialists but since I have practically no GVHD symptoms he only had my lungs checked. ¬†Lastly, an appointment or two ago I brought an anonymous thank you note to MGH to be sent to my donor. ¬†Such a tough note to write because I am not allowed to give any identifiers as to who I am, where I was treated, or where I live plus how do you thank¬†a stranger¬†for donating you bone marrow which ultimately is giving you a second shot at life. ¬†It wasn’t easy but hopefully my donor knows how indebted I am. ¬†Needless to say, I hope when I get to my one year anniversary I will be told I can directly contact my donor because I want to meet this guy, give him a big hug of thanks, and of course¬†I want to buy him a beer…or two…or three! ūüôā

Wishing you all a happy, healthy New Year! Cheers!

Day +138…stronger each and every day

It has been quite some time since I have updated but that is because things have been going so well. ¬†I am back to work and find that I can now last the entire work day without feeling exhausted. ¬†It has been quite busy trying to get organized and see where I left things back in February as well as training some new lab personnel but it has been fun too. ¬†I sleep a lot but I don’t see that as a bad thing because I’ve been getting solid nights of sleep instead of tossing and turning like I’ve been known to do. ¬†I can now go out in public and eat a restaurants though I still proceed with caution and try to avoid crowds as much as possible especially since we are nearing flu season. ¬†I’ve gotten my flu shot though there is always the chance I will still get the flu. ¬†My biggest worry with the flu and cold season is being at work. ¬†I love my colleagues but we’ve all been guilty in the past of coming to work sick because of some pending experiment – hopefully those I am nearest to in the institute will warn me if they’ve been feeling sick (I’d prefer it if they stayed home though and didn’t share the germs! lol). ¬†I take all the precautions I can by using lysol wipes on my desk area and carrying Purell with me wherever I go. ¬†I also am working on the art of opening doors with elbows, hip, feet, anything but my hands as well as kick my habit of touching my face without noticing I am doing it. ¬†

A few weeks back I went to my annual meeting for graduate school. ¬†I presented about my last 7 months of diagnosis and treatment. ¬†It was suppose to be a 15 minute talk that turned into 25 minutes (oops!) but everyone seemed to be okay with my running over time. ¬†In fact I was the last student speaker of the day and by 5:45pm there are usually quite a few folks getting a good nap in but when I was talking everyone seemed to be glued to my story and wanting to hear all about it. ¬†I did well during my entire talk in regards to emotion but I did get emotional when I was thanking people and more specifically when I was thanking Luke. ¬†If you’ve followed my other posts you may recall my mentioning Luke. ¬†Luke was a colleague who passed away earlier this year. ¬†He reached out to me after my diagnosis to share “war stories” since he had been diagnosed with cancer a few months prior to me. ¬†Thanking him for reaching out was very important for me to do but I ended up getting emotional which in turn made many of the people in the crowd get emotional too, especially colleagues who knew Luke. ¬†All in all, people seemed to really appreciate the talk I gave and many admitted they didn’t realize all that a patient goes through and that they will think of the patient more when they do their research which was nice to hear.

For those who haven’t heard,¬†Matt and I purchased a plot of land (close to 39 acres) in Bowdoin. ¬†We were out there on Sunday clearing the spot to build the house and I was helping him pull brush and saplings. ¬†I was quite sore yesterday but it was a good kind of sore! ¬†We are also busy planning the wedding. ¬†Less than 8 months away and so much to do! ¬†It is crazy how quick the time flies by.

Now that things are going so well I feel more comfortable reaching out to my donor. ¬†It has to be anonymous contact but I think it is important to at the very least send a thank you for giving me another shot. ¬†Without my donor, I’d be still going through rounds of chemo and probably wouldn’t be able to say I am in complete remission. ¬†I am hoping I will be able to thank him personally someday but for now it will have to be an anonymous note.

That is about it – I probably won’t be posting all that much now that things are on the mend but I will keep it going with the occasional update and hopefully I will get to say I got word back from my donor. ¬†I go for another appointment next week at MGH so I’d like to give them the note then to pass along to my donor (pending I followed the rules correctly and kept my note completely anonymous!). ¬†

Day +106….COMPLETE REMISSION!

An email came in late last night and I read it first thing this morning…I have nothing else to add beside the quote from the email…

“btw, your bone marrow biopsy looks great! ¬†congrats, you remain in complete remission with absolutely no sign of disease”

This was the first time I heard the phrase “complete remission”. ¬†Previously, I had heard “technically in remission but you still need further treatment”. ¬†“Absolutely no sign of disease” is also something we had yet to hear. ¬†Definitely news for celebration! ¬†YIPPEE!!!!!

Thank you EVERYONE for the love, support, and prayers. ¬†We still have a long road but this is fantastic news! ¬†Last but certainly not least…a bigger thanks than I can ever express to my donor. ¬†He has given me a second chance at life. ¬†I hope to meet him someday! ¬†God bless him!

Day +103

Last week I returned to work for the first time in just about 6 months. ¬†It was a bit crazy, totally felt like I was a kid going back to school! ¬†I worked last Tuesday for 7 hours (really should have called it quits no later than 6 hours but oh well)¬†and¬†Wednesday I was more cautious and called it a day after 6 hours. ¬†Since my parents were on vacation the remainder of the week I chose to work from home Thursday because I had blood work to be done at CMMC and didn’t want to have to drive all the way to Scarborough since I have only driven myself no more than 30 minutes and its a 45-50 minute drive. ¬†Friday I had to go in to interview someone so I kept the day short since I was driving and came home early.

This past Saturday was the exciting Day +100!! I spent the day (weekend really) with a great group of friends brewing beer and having lots of laughs!  If you are someone who is close to myself and my group of friends, you have heard about Festivus and what it entails.  Essentially, it involves brewing beer as well as a dinner party where each couple is in charge of a course and a beer pairing.  Let me just say that there is A LOT of beer available when we all get together!  This year three of us were unable to drink (2 have buns in their ovens and I am not able to put my kidneys through anymore work per doctors orders!).  It was a fantastic time but I was exhausted Sunday when everyone left and even more so when I was at work this past Monday where I worked the entire day.

Today at day +103, I had my 6th bone marrow biopsy but this time it was down at MGH. ¬†Dr. Chen did a good job, he was quite quick. ¬†It will be a couple of days before we hear any results. ¬†He mentioned that after this biopsy he only predicts one more biopsy in my future and that will be at my 1 year anniversary of transplant. ¬†It was then that I don’t know if it was the buildup of nerves or the pre-treatment of drugs (ativan and morphine to calm me and help with the pain, more so for the drive home) or just the fact that we need to wait a few days for results but I had a mini cry session. ¬†I don’t cry often and in fact Dr. Chen has only seen it happen once before so he was quite shocked to see this. ¬†He said something along the lines of how upbeat and positive I always am. ¬†I had asked him if I needed to worry about anything. ¬†He said worry about what? ¬†I told him how I see/hear about all these cases of AML around me where people have serious complications and I find myself lucky to have not experienced those things that some of those patients have been through. ¬†But at the same time, I question myself and wonder if the other shoe will drop and my bad news will come along. ¬†He basically said to me that some cases occur with little complications and basically he said to me that we still have a long way to go but out of all of his patients, my case is one that he doesn’t lose sleep over. ¬†He said he doesn’t worry too much about me and said I am doing really well. ¬†It was a relief to hear. ¬†I think there will always be this fear hiding away that the cancer could return. ¬†Dr. Chen and I hugged it out and I was told to not worry too much. ¬†I try not to but sometimes the negative thoughts creep in which he said is completely normal. ¬†He said he would be worried for me if I wasn’t worried at all, it is natural to worry a little.

Day +93

Phew! ¬†We are almost at the Day +100 milestone! ¬†It seems like the time has flown by but at the same time has gone in a snails pace. ¬†My apologies to those who follow my updates, I have been slack this past month or so. ¬†Just a few things to update on. ¬†The first is that I am doing really well and have been cleared to return to work. ¬†It will be a slow transition because I am bound to get exhausted just a few hours into my work day. ¬†I don’t really have that many work limitations but will need to move forward with some sense of caution such as bringing bottled water with me to work instead of using the water fountain, using hand sanitizer and/or washing my hands like it is going out of style, avoiding those who are sick or have been around someone who has been sick, and being aware of when I have reached my limit for the day and need to go home and rest. ¬†Going into work and making myself exhausted will surely get me sick so I need to work enough to start building up strength but take it in baby steps. ¬†Thankfully I have amazing support at work who just want to see me get better. ¬†Just recently I was cleared to slowly start venturing out into the real world with the restriction that I need to be smart about it and not put myself in situations where I¬†could get sick. ¬†I was approved to go to two concerts (Lady Antebellum and Jason Aldean) this weekend at the Bangor Waterfront solely because it is an outdoor venue, if this was in an arena there is a good chance I wouldn’t be allowed to go so thankfully it is outdoors and I can go to two of the four shows I originally would have gone to this summer. It should be a fun weekend with Matt and our good friends Kristal and Trevor.¬†

Some exciting news to report that I am sure some of you have heard is that Matthew proposed to me!  He was wanting to propose for some time but the ring took two months to come in.  Once it came in, it took all of two days for Matt to pop the question.  We are beyond excited and are busy planning the wedding!  We are also in the process of buying land so that in the next few years we can work towards building our dream home.  Lots of exciting times coming!

The last time I updated people I spoke of an “episode” in which I got dizzy, began to stumble, broke into a sweat and after sitting in the shade, I got sick before I felt better. ¬†Well last weekend I experienced this again but this time I briefly passed out. ¬†Matt and I were making wine and I started to feel dizzy so I sat on the corner of a counter top and grabbed Matt’s arm. He asked if I was okay and I told him I was dizzy. ¬†That is the last I remember, he says I passed out but was trying to hold myself up so he grabbed me and lowered me to the ground. ¬†Within seconds I was coming to but I was so confused – first time ever passing out. ¬†Like last time, I¬†broke into a sweat and soon after got sick. ¬†It was not a fun day. ¬†The good doc said it was classic dehydration and to drink as often as possible to keep hydrated. ¬†He also said when I begin to move around more I should experience this less and less. ¬†Fingers crossed that is the case but for now I am consuming as much water as possible.

 

There is clearly a story behind the beer....find me and I'll tell you about it! :-)

There is clearly a story behind the beer….find me and I’ll tell you about it! ūüôā

Day +64

I have been slacking on the blog posts! ¬†Last week I was camping and frankly this week I have been just plain lazy! ¬†Not a ton to update on really. ¬†Last weeks appointment for the first time I hadn’t lost any weight (I was averaging a pound a week) but my counts were continuing to fluctuate and my kidney function (creatinine levels) was still high so we adjusted my tacrolimus to a lower dose and cut my famvir to a half dose for the week. ¬†I was also instructed to drink LOTS of water to flush those kidneys since most of my meds filter through my kidneys and they are working very hard right now. ¬†I was camping with Matt and my family at Hermit Island from the 19th to the 26th with the usual Hermit Island group (love them!). ¬†Bonus was that my cousin Michele, her family, and my Memere Shirley had the cabin that week so we got to spend some time with them as well. ¬†We couldn’t have asked for better weather! ¬†I was armed with my Purell, sanitizing wipes for the bathrooms, and the shower was always sprayed down before I used it. ¬†We took all the necessary precautions including having me sit out of the direct sun (pure torture if you ask me! haha) ¬†The week was good for me because I did a lot of walking but was able to get a ton of fresh air which I think was what I needed. ¬†Hermit Island has always been good for my soul so I was happy I was able to go and that I was able to show Matt why I love the place so much (course the people we camp with are the best part!). ¬†This week I went to the MGH clinic and met with Dr. Chen. ¬†He commented how my father was nicely tanned and I was nicely pale, haha guess we did a good job not letting me get too much sun at the beach! ¬†Clearly all the walking I did caused me to drop almost 3 pounds – not exactly what I intended but at least my muscles got a nice workout, now I just need to keep it up and get out there moving! ¬†My counts were back up a little bit and my creatinine levels (kidney function) were finally in a normal range – yay! ¬†Because of this I was able to get rid of the yellow paint (Mepron) and switch to pill form (Bactrum) three times a week as long as I ate yogurt daily. ¬†SO much better than the yellow paint! ¬†We also went back to a full Famvir pill and upped my morning dose of tacrolimus. ¬†Yesterday I had a bit of a scare I guess you could call it. ¬†I was talking with my neighbor (few houses down) who also was diagnosed with AML last September. ¬†She has a different subtype and therefore has experienced some things differently than I have. ¬†While talking with her we were standing in my folks driveway in the sun and I don’t really know what happened but I all of a sudden got extremely hot and dizzy to the point of which I stumbled. ¬†She walked me to the shade on the porch to sit me down. ¬†I broke out in a sweat for a bit and then after I got sick it slowly got better and then I felt fine. ¬†I don’t know if the heat got to me since there was no breeze like there was when I was camping at Hermit Island or what but it definitely freaked me out for a few minutes. ¬†Clearly not a great moment on my part. ¬†Poor her having to deal with me when she herself is going through the same fight I am! ¬†Since then I have felt fine and frankly I’m quite frustrated I got sick and that it happened because I have done so well and its been weeks since I have gotten sick but I guess it is just the way it is. ¬†Anyways, here are some photos from the camping trip…enjoy!

Another gorgeous sunset at Hermit Island

Another gorgeous sunset at Hermit Island

BIG hat to protect from the sun!

BIG hat to protect from the sun!

Matt and I hanging out on the beach

Matt and I hanging out on the beach

Memere Shirley and I

Memere Shirley and I

Chewbacca (LOL couldn''t resist Sean!) and I

Chewbacca (LOL couldn”t resist Sean!) and I

Morgan, Sean, Matt and I

Morgan, Sean, Matt and I

Day +50

Wow, halfway there to the big milestone of Day 100. ¬†So far so good – lets hope to keep it up! ¬†On Tuesday I had my weekly appointment with Dr. Chen. ¬†Everything looked great in regards to my blood work. ¬†The one thing was my creatinine levels were a bit on the high side. ¬†This an indicator of kidney function. ¬†He told me to drink lots of water and that my level was probably on the high side because my tacrolimus levels have been on the high side even though we’ve been adjusting it weekly. ¬†The thing is apparently tacrolimus and fluconazole in combination can be hard on the kidneys (partly I think because the fluconazole can mess with the tacrolimus absorption/flitering through the kidneys – he said something like that, lol I can’t exactly recall!) so he discussed lowering my fluconazole to 200mg instead of 400mg (which I was excited about because I hate taking those two pills! I have to take them with pudding to get them down!). ¬†I got a call later in the evening from Reese (Dr. Chen’s nurse) that my tacrolimus level came back and was still high but he wanted me to go down to one fluconazole pill a day to see if that would help. ¬†Besides drink lots of water there really wasn’t much more for Dr. Chen to discuss with me in terms of what I should be doing. ¬†He said to behave (with a laugh) and keep up the good work. ¬†I pestered him with a bunch of questions for this coming week (he approved me to go camping with the family at Hermit Island next week as long as I had a bucket of Purell with me and use Chlorox wipes in the bathrooms) as well as some questions about the rules after Day +100. ¬†We also discussed CAR-T technology and the somewhat recent article in Forbes about Novartis working to get this technology better developed for treatment of certain leukemias (acute lymphoid) and lymphomas – myeloid leukemia is still tricky he said. ¬†Here is the link to the article if you are interested, I found it to be an interesting article not just on the science level but also the business level –¬†http://www.forbes.com/sites/matthewherper/2014/05/07/is-this-how-well-cure-cancer/ . ¬† After that we geared up to head out and after a hug from Dr. Chen (he must like me – maybe because I talk science with him and as he tells me “I ask him the most unexpected questions about what I can and can’t do” – probably why he laughs at me so much! lol) we were on our way home. ¬†The rest of this week has been packing and preparing for a week I always look forward to which is vacation at Hermit Island with not only my family but so many great friends as well! ¬†It is bound to be a great week minus the side trip next Tuesday for my weekly appointment at Mass General. ¬†Though I almost forgot…Dr. Chen said after Day 60 or so we can start including Dr. Rausch into the schedule. ¬†After some jokes about trips to Boston versus CMMC, it sounds like I will start alternating weeks to go to Boston and in the off weeks go see Rausch at CMMC. ¬†Nice to see we are moving in the right direction!¬†

Day +41

Yesterday I had my weekly appointment at the clinic at Mass General. ¬†Everything looked great. ¬†My counts have jumped up quite a bit to the point that technically I am no longer neutropenic but the way Jess (Dr. Chen’s nurse practitioner) described it was that yes I have neutrophils but they basically don’t know what they are doing which is why I still need to be cautious around crowds as well as eating a neutropenic diet. ¬†She said to be honest my immune system for the next few years will be “confused”. ¬†What may normally be a weeklong cold could be three weeks for me which is why they watch over me and other transplant patients so closely. ¬†My tacrolimus levels were still high so we’ve adjusted the dose yet again. ¬†I started with 2.5 mg twice a day, last week was on 2 mg twice a day and now I am down to 1.5 mg twice a day. ¬†Works for me, less pills to take makes me happy. ¬†After some trial and error I think we’ve figured out how to get the “paint” down. ¬†I split the 10mL into two shot glasses with a little bit of pineapple juice. ¬†I basically imagine it as that terrible shot someone bought you during your college years at the bar and then I chase it with more pineapple juice. ¬†Sounds ridiculous but hey whatever works to get it down and not have it come promptly back up.

I’m told by those closest to me that I sometimes (or maybe more than sometimes) sugarcoat how well I am feeling. ¬†To be honest I feel pretty good but I do get tired and more times than not I have problems with my stomach. ¬†My stomach goes between feeling okay to more often then not feeling off. ¬†Sometimes that off feeling is just cramping, sometimes its a constant ache, and other times it also comes with nausea and/or dry heaves. ¬†Because of this I now take Zofran first thing in the morning to see if it’ll help with the stomach pains and nausea. ¬†Jess felt that the stomach problems could be due to the c-diff I had or even the vancomycin treatment I had for c-diff since it can be very harsh to the intestinal tract. ¬†It could be also be all the meds I am taking which is why I try to eat a little bit every few hours to keep something in my stomach. ¬†It’ll hopefully get better with time. ¬†Though I am eating more than when I was in the hospital I am still losing weight (not intentionally). ¬†The past few appointments its been about a pound a week on average. ¬†I am trying to get out and walk more to build up strength and endurance but it has been tough when I’m down and out (so to speak) due to the stomach issues. ¬†Hopefully the addition of Zofran will help the stomach issues so I can get out moving more frequently which in turn will help with appetite so I can eat more than I do.

Day +35

Today is day +35 and I apologize for slacking a little on the update. ¬†This past Tuesday Matt drove me down to Boston for my weekly appointment. ¬†Not a whole lot to report. ¬†Blood counts look good, the numbers are continuing to go up¬†slowly but surely. ¬†Liver and kidney numbers looked good too. ¬†I was suppose to meet with the nurse practitioner but Dr. Chen switched with her so I met with him. ¬†We talked about how I was feeling of course but also fishing because I sent him an email about by day +30 festivities asking him if I could get any more remote than a pond in the middle of the woods (see photos below). ¬†We discussed the difficulties I had just that morning with the yellow finger paint medicine (frankly I don’t even remember what it is called because we all refer to it as that). ¬†It took awhile for the pharmacy to have it ready so it wasn’t until Tuesday morning that I could take it for the first time. ¬†I was warned it didn’t taste great so I took some pudding hoping to coat my mouth and then took the “paint” followed by water to wash it down. ¬†Yeah, didn’t work. ¬†It promptly came back up so Dr. Chen and I talked about a few methods of attempting to get it down and yesterday it seemed to work. ¬†I am due to try it now for today’s dose. ¬†We decided I shouldn’t take it when I take my morning pills incase it does come back up and brings those pills with it so I take it with lunch or some sort of afternoon snack. ¬†I still take pudding but now fill a syringe (10 mL) of the paint to basically squirt in the back of my mouth. ¬†It worked decent enough yesterday so hopefully today goes smoothly. ¬†I also take an Ativan to help with nausea beforehand. ¬†I won’t need to stay on this med forever but my counts need to get a bit higher before he puts me on Bactrim pills since Bactrim can lower counts but I need to be on these meds to prevent pneumonia. ¬†Fun times. ¬†Good news, I finished the vancomycin so no more capsules at 6AM, noon, 6PM, and midnight and my tacro levels were high so they’ve lowered the dose to 2mg twice a day so instead of 10 capsules I am taking 8 (4 at 10AM and 4 at 10PM). ¬†Nice to see the pill count drop a bit. ¬†Besides that, not a lot to report just laying low like I am suppose to and working on getting better!

Quiet and empty...got to love it!

Quiet and empty…got to love it!

Dad canoed me around while I fished.

Dad canoed me around while I fished.

Matt in one of the kayaks.  It was just the three of us on the pond!

Matt in one of the kayaks. It was just the three of us on the pond!

Matt and I with our keepers.  He out fished me and got two in the kayak but released on.  I almost had a second one in the canoe but lost it.  Win for him :-)

Matt and I with our keepers. He out fished me and got two in the kayak but released on. I almost had a second one in the canoe but lost it. Win for him ūüôā

Day +26…first follow-up appointment

Yesterday was my first follow-up appointment with Dr. Chen since I left MGH last Friday.  Not a lot to update on really Рfairly uneventful meeting.  My blood work came back and everything looked good.  They drew multiple vials for the following a CBC (complete blood count), check my tacrolimus levels to see if my medication dose needs to be altered, test for CMV (cytomegalovirus, basically a certain viral infection), test for EBV (Ebstein-Barr virus), a sample for the blood bank for blood typing in case I needed an infusion of any kind, test my levels of IgG (immunoglobulin G, levels may drop to a point where I would need an infusion of IgG), and a metabolic panel to test for things like levels of my liver enzymes and kidney function.  These will be the common things they check on my weekly visits to MGH.  My counts are going up but most are moving slowly which can be expected because I got marrow instead of stem cells.  My WBC was 1.5, ANC was 0.48, hematocrit was around 26.2, and my platelets jumped up to 101,000.  Dr. Chen laughed at me (he is always laughing at me) because I got excited that my platelets were over 50,000 meaning I get to shave my legs!  Not all my leg hair fell out from the chemo and it is driving me crazy!  

Basically we chatted with Dr. Chen about my counts and what to expect over the coming weeks. ¬†Pretty much worrying about the same things we worried about during the first 30 days (graft versus host disease (GVHD) and infection are the big ones). ¬†So far no signs of GVHD or infection. ¬†Pending how I am doing/feel he did not see a problem with me going camping at Hermit Island this year, I just need to be super careful and he told me to bring a bucket of Purell, haha. ¬†We did alter some of my meds and Dr. Chen added a new one that will basically prophylactically treat for pneumonia. ¬†Normally he would prescribe Bactrum (antibiotic) but he can’t do so until my ANC is stably over 0.5. ¬†So with this smirk on his face (almost like he wanted to laugh) he began telling me that there are two alternatives to start giving me this treatment. ¬†The first is through IV so he’d like to try the other one. ¬†He begins to describe it as a yellow liquid that is fairly thick and sort of like finger paint that some people say doesn’t taste so bad but others hate it. ¬†Great! ¬†I totally want to try it now that you described it like that! ¬†He told me I could chase it with anything I wanted so of course I joked that I’d chase it with some sort of alcohol and he laughed and said, we aren’t there yet. ¬†Darn, still no drinks for me! ¬†ūüôā

So while I am talking about my meds I should run through them.  Until I take them all (few more days), at 6AM, noon, 6PM, and midnight I take a vancomycin capsule to treat for the C-diff I tested positive for while in the hospital.  Around 8AM, I take one capsule of ursodiol (to protect my liver), a magnesium supplement (because tacrolimus depletes magnesium), two pills of fluconazole (prophylactic anti-fungal, I found I have to take these with pudding to get them down), one pill of famciclovir (prophylactic anti-viral that we just learned I will take for 2 years to mostly prevent shingles), and one pill of omeprazole/Prilosec (to protect my stomach).  At 10AM, right now I take 5 capsules or 2.5mg of tacrolimus which is to GVHD and this is the one they may need to alter the dose when they check the levels in my blood.  Around 8PM I take another magnesium, another capsule of ursodiol, and I was taking another pill of omeprazole but Dr. Chen just stopped that one.  Then at 10PM another 5 capsules or 2.5mg of tacrolimus.  Now I will be adding the finger paint to the mix.  Fun times!  haha, at least I am slowly getting better at taking pills Рkind of have to!

Mass General Day +22…home sweet home!

Yesterday was day +22¬†and I was able to go home! ¬†YIPPEE!! ¬†I knew 22 was a lucky number for me – day I was born &¬†my college soccer number! ¬†Dad was there to pick me up around 10AM and a little after 11 I was headed to the Jeep (photos below that dad posted to Facebook). ¬†They offered me a wheelchair to leave, heck no, I walked out! ¬†Getting outside all I could think is “ahhh fresh air!” ¬†Getting discharged from the hospital was pretty straight forward – Cathleen and Christine had everything situated! ¬†Biggest thing was going over my meds (see photos below). ¬†Multiple scripts that for the next two weeks I take 23 pills over the course of the day and then switch to 19 pills a day until told otherwise. ¬†Ugh, have I ever mentioned I don’t do all that well taking pills?! ¬†More than once I’ve gagged taking pills and at times in the¬†hospital it had made me get sick. ¬†Joy…things to look forward to potentially happening! ¬†One of my pills I actually need to take two of is the worst and today I used ice cream to get them down, it helped but I’ll be trying pudding and applesauce in the future to see if those are better. ¬†

Prior to leaving the hospital I took a small dose of Ativan (anti-nausea) in hopes that it would help with the drive home since I recall the first few car trips after induction therapy I got nauseous in the car. ¬†I have to say, I was shocked I did so well on the drive home. ¬†Didn’t get sick and my stomach only felt a little off but that could have been from not having a whole lot in my stomach either. ¬†Since I’ve gotten home I have been attempting small but warm/hot meals. ¬†I haven’t eaten hot food since my first week in the hospital and I was there 30 days. ¬†The smells just got to me and I find that I am still very sensitive to smells. ¬†I’ve been trying hard to not let the smells get to me so I can stomach the food. ¬†I need to start eating healthier foods – a more balanced diet! ¬†I lost roughly 13 pounds during this hospital stay which is less than I had anticipated (I was told it could be up to 20% of my body weight!) so I’d like to get into a groove of healthy eating and get the nutrition I need. ¬†I also had an amazing night of sleep…so good to not have to sleep in a hospital bed! ¬†I am basically just laying low and going one day at a time. ¬†I am sure I will talk more about this in the future but it¬†is a learning curve for all of us. ¬†My parents and Matt both sanitized their houses top to bottom and we are all extremely careful with re-sanitizing doorknobs, countertops, etc as well as washing our hands A LOT. ¬†Biggest worry now is getting an infection. ¬†It is why there is a limit on visitors and many other rules that I have to follow. ¬†It won’t be like this forever but until day +100, I need to be extremely careful.

All ready to walk out!

All ready to walk out!

Freedom!  Had to wear an N95 mask out to the Jeep but after that I was good to go without it until I have to go back to the clinic.

Freedom! Had to wear an N95 mask out to the Jeep but after that I was good to go without it until I have to go back to the clinic.

Someone was happy I was home.  My dad's caption on Facebook was this: Me: "Hi Buddy!" Remi: "Where have you been Amanda?  I've missed you!" Sort of says it all.  He has been great, like he knows he needs to be gentle around me.

Someone was happy I was home. My dad’s caption on Facebook was this:
Me: “Hi Buddy!”
Remi: “Where have you been Amanda? I’ve missed you!”
Sort of says it all. He has been great, like he knows he needs to be gentle around me.

UGH! Meds, meds, and more meds!

UGH! Meds, meds, and more meds!

Until my medicine box arrives shot glasses seemed like the most logical way to get my daily pills ready!

Until my medicine box arrives shot glasses seemed like the most logical way to get my daily pills ready!