Two Years Post- Bone Marrow Transplant

Today is my two-year anniversary from the day I received my new cells from my bone marrow transplant! 

Overall I am doing really well! 😊

A LOT has happened since the last time I wrote here. 

Since September I have been taking online courses through Camden County College. It's been going well, but I wasn't seeing how I would complete my Bachelor's degree by staying there. So, after this semester is over, I am switching to studying with BYU Pathways- the advanced track. I found out that they will accept a lot of the credits I completed at BYU and the credits I have taken at CCC. That will put me much further along and much closer to getting my Bachelor's degree! Schooling has been frustrating for me over the past few years mostly because I haven't found a major that has stuck (not to mention all the interruptions from relapsing). BYU Pathways offers a "professional studies" degree which I think I can make work for me! It's also all online so I can take the courses while I still live in NJ. I'm excited about that change this fall!

At the end of October I started doing physical therapy for my right shoulder because I have a winged scapula. This was caused by the last five years of having multiple ports in my upper right chest. I've been going every week I can since then. My physical therapist, John (shout out to Toro PT!), gives me exercises that strengthen my entire body which ultimately helps my shoulder. It's been awesome and I can feel myself getting stronger!

A snapshot of what I do at PT

Something else that happened around that time was that I was applying for jobs. I was going to interview to work at the front desk at a dentist's office but then a few days later a friend from church told me about a job as an administrative assistant for a company called Alsana. I was now stuck between deciding which job to take...or should I take both? It was pretty stressful but ultimately I chose to do the administrative assistant position with Alsana and I am soooo glad I did! It is a part-time work from home position which has been great for me over the last couple of months. Alsana is a company that helps those struggling with eating disorders and I help out by assisting the CEOs of the company. 

At the end of November my best friend Amber and I started looking for apartments and we found one that we liked pretty quickly! It is newly renovated which is a lot of what drew us to it. We are still a close drive to both of our homes so that is very convenient. I was excited but also pretty anxious about the move. We've been living here since the end of December and it has been really great! Other than a few hiccups with neighbors and mice, moving out was a good decision and I'm happy I did it. 

I also think it's important for me to add that not everything this fall/winter has been rainbows and butterflies. I had a cold that would not go away for almost two months. I dealt with a very high heart rate for weeks which is really uncomfortable and made me feel out of breath and anxious for a long time. A high heart rate is a trigger for me from my cancer experiences. My resting heart rate was in the 90s and the norm is usually in the low 60s. I even saw a cardiologist but thankfully nothing was really wrong with my heart, it was just beating fast. Oh yeah, and half of my family got sick with COVID right after Christmas. I had moved out right in time, but I couldn't go home and visit for most of January. I had a few COVID tests done myself,  but luckily they all came back negative.  

In general being sick for so long and all these big life changes made me stressed and kind of unhappy. Thankfully after a few weeks in the new apartment, my cold and high heart rate went away. Now that things have settled in my life, I feel better and am happier! Also, it's finally SPRING and I am so excited for warmer weather and spending time outside!

Some other things that are going on:

In January I turned 25!

On March 6 I was able to get my first COVID shot and I am getting my second one on April 3!

Just this past week I have also added working part-time at the Philadelphia temple again! I worked there two other times over the last five years and it is so nice to be welcomed back. It's great to have an opportunity to get out out of my apartment (since I do school and admin job online). 

Really the only thing left in my treatment is getting all of my childhood vaccines. I can't start getting them until my Immunoglobulin level (antibodies in the blood, part of the immune system) is high enough. Every other month I have needed to get IVIG, or immunoglobulin through an IV, to replenish the amount that my body needs to fight off bacteria and viruses. It has been pretty frustrating that it is taking such a long time to hold its own. Please send some prayers my way that my body will create enough of this so the number goes up, stays up, and I can get my vaccines and be completely done! The vaccinations themselves will take months to complete so I am anxious to get started.

Overall, I am pleased with the comeback my body (and my life) has made these last two years. It feels good to be doing normal everyday things again like school and work. Time has really helped in making cancer more of a memory than something I have to think about every day. For that, I am so grateful! 

Hair growth update as of 3/21!

As always, thank you for reading! I hope you are continuing to stay safe and healthy!

xo,

Megan

Healthy Again!

Back near the beginning of July I finally had my one year post-transplant appointment. They took seventeen vials of blood from me to run a lot of different tests. I am happy to report that according to my BMT team, I am healthy again! The bone marrow transplant worked. I don't need to be on any pills anymore! My immune system is still taking it's time coming back completely, but to be fair it has been through a lot. What this means is that I am free to go back to school and work and be in public again. Of course now that I am better, we are all still dealing with Covid. So that's a bummer. I am also still waiting on my immune system to be ready to receive immunizations again. That is the last thing I will need to do to be completely finished with my treatment. 

To my surprise, my doctor said that my last bone marrow aspirate (a procedure where they extract some of my bone marrow to look at) was no longer needed. The last time I had one done was September 2019. I was going to have another one in March but then Covid hit and everything got pushed back. My blood work has looked great though so he said we can just skip it! That was a relief. Plus he's right. Doing that procedure would be pretty pointless because I am clearly doing great. My blood doesn't show anything suspicious. It shows that my body has taken to the marrow I received from my donor very well. 

Speaking of my donor, back in the beginning of May I found out who my donor was! Turns out she was a girl around my age from Texas. She and I have emailed back and forth a bit and I was able to find out what the process of being a donor was like for her. So that was cool! 

On Wednesday I finally got my port removed! That was a very big step! Over the last five years I have had three separate ports, one for each relapse. The one I just got removed I have had since December 2018. Getting it taken out was bittersweet because having my port was like a safety net for me. My port was how I've gotten chemo, bloodwork, fluids, etc. Words can't express how grateful I am to have had a port. It made everything so much easier. I know I don't need it anymore, so I was able to make the decision to get it taken out. The reason why I kept it in so long is because the veins in my hands and my arms are very hard to access. They were overused from when I was first diagnosed in 2009. The last IV I remember getting just from this relapse was last February. Still after all that time, when I needed an IV for the port removal surgery, it took four attempts to get a vein. Good thing I was under anesthesia for that! When I got home from the surgery that day, my chest where they removed the port hardly hurt at all. I needed to ice my already bruising hand just from getting poked for IVs! Anyway, hopefully I will not be needing to get an IV anytime in the near future.

My port accessed one last time before going into surgery to get it removed

That is the update on my health. It's still incredible for me to think of where I was just last year to where I am now. I am very grateful.  

During the last few months with Covid, my family and I have remained healthy. I was able to move into a new bedroom- the first time I've had my own room in my house! I've always shared with Mal and Marti. The biggest reason for getting my own room was so I could fit a desk for school. This summer I started taking classes at Camden County College. I just did one to start and in the beginning of September I will be a full-time student. It will be online like everyone else but that's okay. I will miss BYU and I truly loved it there, but I know that going back out to Utah is not what I am supposed to do right now. I was able to get my tuition paid for by a grant so I decided I'm going to try to finish my degree locally. That's all I have planned for right now. Going to school and working with my dad. I'm open to whatever comes next! 😊

Thanks for reading and I hope you are staying safe and healthy!

xo,

Megan

One Year Post- Bone Marrow Transplant

It has officially been ONE YEAR since my bone marrow transplant!! I can hardly believe that. This past year has really gone by so fast! Looking back over the last twelve months, I can see just how far I have come and I am so grateful for how smoothly my recovery has been! Some of the things that have improved since then are my energy, strength, ability to eat without a feeding tube, gained some weight so I'm not quite a stick figure anymore, and my hair has grown. Another thing is I have not had to go back to the hospital since leaving. That has been the biggest blessing of all!

Some pictures from just a year ago-

BMT day! Me holding the bag of cells for my new marrow

This was the sixth and last week of my hospital stay when I was finally allowed to go outside. It was glorious!

Leaving the hospital!! 4/27/19

Moody with the feeding tube

Yay no more feeding tube and wow so bald still

Also, this is a little thing, but I am now a pro pill taker! When all of this started back in 2009, I'm embarrassed to admit that at times it would take me over thirty minutes to swallow one pill. In my defense, those were usually the chemo ones that made me feel awful afterwards but still, even I can admit I was being a bit ridiculous. Even at the end of my BMT hospital stay I struggled with it. Being able to swallow four decent sized pills was a huge battle for me, but it was the only way I was allowed to go home. Now I am happy to say that I can swallow up to six pills at once. I know, I know, I'm sure many people can do that, but it's a huge accomplishment for me! It's the little victories.

It has been quite a while since I have written...about six months actually. A lot has happened in that time but I guess I feel like nothing happened that was important enough to share here on my blog regarding my health, which, really, is a good thing!

To pick up where I left off six months ago, I was able to work for my dad for a few months in the fall before it got too cold. He owns a parking lot striping business. It was good to work for him not only for the money aspect but it made me stronger physically.

Work with Dad (I help layout and he paints)

I got the rest of my wishes fulfilled from the Dear Jack Foundation. I got eight Marvel movies, a meal at The Cheesecake Factory, and a spa day for me and my mom. I am so thankful for organizations like them who care about young adults who struggle/have struggled with cancer.

Our lunch at The Cheesecake Factory

My favorite cheesecake- the 40th Anniversary Chocolate Cake Cheesecake

In January for me and Mal's 24th birthday we went to a cool place in NYC called The Museum of Ice Cream. We had a lot of fun there and I would highly recommend going!

In the beginning of February I was asked to start working with the young women in my church. These girls are ages 12-18 and I help mostly with the 14-15 year old girls. I have really enjoyed having that responsibility!

The other day I was thinking about the day I went into the hospital in 2019 for my BMT which was March 17th. I was thinking about how that was the beginning of my quarantine for six weeks in the hospital and now here I am, with most of the world, doing some version of quarantine again for the coronavirus! It's okay though because I consider myself a pro at quarantining and social distancing. Not going to lie, it's kind of nice that other people can now appreciate a little what it has been like for me to have to social distance and stay away from germs as much as possible. Thank goodness we can still go outside, especially now that it's spring!

As for my health, over the past six months I really don't have much to complain about. My doctors have been happy with my progress for the most part. Something that we have been working to fix is my hormones. The BMT really messed with those. We did blood work to see what my levels were and at one point I had no estrogen in my body! So since then we have been trying to find ways to balance everything out but as some of you know, messing with hormones is not fun and takes time. 🙄

Just recently my ANC (acute neutrophil count), which determines how strong my immune system is, has dropped pretty low. My doctors don't seem too concerned yet because it isn't uncommon for that to happen to someone like me who has had a lot of chemo and radiation over the last few years. Also, my other counts look fine and we think it might actually be from increasing the dosage of a medication I am on. We are taking that away for now and seeing if that helps. I really hope that it will!

I haven't had chemotherapy or radiation in over a year now (WOOHOO!) but my recovery is unfortunately still not over. Over the next year or so I have to get all of my childhood vaccinations again since apparently they were wiped out with my old marrow. To say I am not looking forward to that is an understatement. But, I'll get through it just like everything else.

My one year post-transplant appointments have all been postponed, including what will hopefully be my last ever bone marrow aspirate due to the precautions for coronavirus. After everything comes back good I will finally be getting my port taken out. I could have had it out a while ago but with my history, I just wanted to be extra sure. Another good thing that will happen is I will finally find out who my donor was! That will be exciting because right now I know absolutely nothing about them.

Hair growth picture- October 2019

Hair growth picture- March 2020- It's coming along slowly but surely!

HOORAY for one year whole year of being cancer free! I'm hoping for many more better and healthier years ahead.

I still hear about those who pray for me and I still appreciate it so much! Thank you for caring about me and for reading my blog! It means a lot 😊

xo,

Megan

Life Update- Six Months Post-Transplant

Time for another update! 😄 On Thursday, September 26 I made it to my six months post-transplant date! I can't believe not only how quickly the time has gone by but how much my health has improved during that time. Bodies are truly amazing!!

Yeah! Made it to six months!

For like six weeks I had a really annoying cough and runny nose. I finally took an allergy pill and was like-OH, problem solved! I didn't realize that's what it was because I don't think I've ever had summer allergies. Maybe I picked up a new allergy from my donor? Who knows. Only other complaint is that sometimes I don't have the best sleep. A few months ago I slept through the night so well and now I tend to wake up at least once and lay awake for like an hour. It's frustrating. I think it has to do with some of my meds and also the transplant messed with my hormones so I'm getting that looked into soon. Because of that (or maybe just because I'm only six months post transplant), I usually take a nap every day.

My doctors seem to be really pleased with my progress. I see them only once every three weeks now. I still need to be careful about germs though. My immune system is still weak. It's hard for me to wrap my mind around that sometimes when I feel normal. But I always have my mask and hand sanitizer with me just in case. I'm nervous now that cold and flu season are upon us. I consider myself extremely lucky that I got out of the hospital at the end of April and I've had the summer months to get better when there aren't a lot of sicknesses spreading around. Fall and winter are a different story. I would absolutely hate to have to go back to the hospital after making it this long without needing to. Everyone make sure you get your flu shot! I've never been a huge advocate for that (mostly because I absolutely despise getting shots) but this year I am. Do it for yourself and for those around you!

Hair growth progress as of 9/19/19 👍 (still waiting on that bald spot in the front to grow in though🙄)

This blog post wouldn't be complete without a picture with Max 🤷

Some highlights from the last two months-

In the middle of August, I started doing yoga-and I love it! Not only is it relaxing, but I had been working on stretching out my muscles anyway at home and yoga is perfect for that! Story time- so Camden County College offers "personal enrichment" courses and one of the courses was a 12 week yoga class for $115. I was greatly considering signing up for it since I was interested in starting yoga. The next morning my mom asked me if I wanted to attend a beginners yoga class at Experience Yoga with her (she's really into yoga too) and I agreed. The instructor's name was Tami and she was wonderful. After the class we got to talking with her and she pulled out a flyer for a new free yoga class she was instructing for cancer patients/survivors once a week! I just about fell over I was so surprised/excited. There is no way that was a coincidence!! I had literally been looking at that other class the night before! In that moment I really felt God's awareness of me and my needs. I have since attended the class every week and I love it! I'm the youngest by a lot but that doesn't bother me. There are kind, good people there and it is a joy to practice yoga with them.

My favorite part of yoga is the end when you find a comfortable position and just sort of breath and meditate. It's called Shavasana. It is the most relaxing thing in the world and I swear I could stay like that for hours. On one of the nights that we were wrapping up class and doing the ending meditation, I felt intense gratitude for my body and the amazing things it had accomplished and healed from in such a short amount of time. The ways that it is working to restore my health is truly a miracle. I was moved practically to tears. I said a little prayer in my mind thanking God for my healing and for the gift of my body. So grateful.

A few months ago I was scrolling through my phone and deleting pictures when I came across a picture I had taken of a paper that talked about a foundation called The Dear Jack Foundation. To my surprise and delight I found out they were a wish granting foundation for adults (aka, me!) and I submitted an application. They were so kind and generous not only to accept my application, but since then they have given me an iPhone Xs! With getting a new phone I was able to trade in my old phone for apple credit since I kept it in such good condition and with that credit I got AirPods. I absolutely love both things and I use them every day. I am so grateful for the Dear Jack Foundation!

In the beginning of August, I had the privilege of going to do a private session at the LDS Philadelphia Temple with my parents. In The Church of Jesus Christ of Latter-day Saints, temples are a sacred place where we go to worship and make promises with God. I had been unable to go since the previous November due to my illness and also because I couldn't be around a lot of people. The people at the temple arranged for me and my parents to do a session so I wouldn't have to worry about germs. It was the first time they did that at the Philadelphia Temple so it was pretty special and I am very appreciative to all who made that possible.

Philadelphia Temple

I realize this post is getting a little long so let me shorten the rest of the highlights.

My best friend Amber came home for the month of August and it was so nice having her here!

Amber, me, and Mal celebrating Amber's birthday

I went to the boardwalk one night with my family and Amber and we had such a good time enjoying the weather, pizza, fries, and ice cream!

I love my family! + Amber💜

At the end of August, my dad turned 65 and for his birthday we did a pirate themed escape room (so much fun!) and I was the mastermind behind throwing him a surprise birthday party. We had some family and friends over for waffles and ice cream and it was a lovely night. I think he was surprised??

A few weekends ago me, Marti, my mom, and my dad went to Dalton's farm to walk through the sunflower fields. It was so lovely. Definitely an item I checked off my bucket list!

And lastly, just a week ago I went to Ocean City with my friends Sarah and Ashley to see the sunrise on the beach. It was beyond beautiful and we had so much fun taking pictures and just enjoying it!

Some other things-

Fun night with my fave newlyweds 

Moved Mal to New York!

I feel like my life has some normalcy to it now. I am very content. I am still going strong with my to-do lists (they help me so much!) and I have things to do outside of the house now. I've been going to Institute (a scripture study class) and I attend free exercise classes for cancer patients/survivors throughout the week. I'm also reading like crazy! And not just fiction novels but I've been really into nonfiction lately too. I have some books from National Geographic about Anatomy, Science, and Nutrition (thanks to Max who recently chewed the cover of the library book version so now it's mine and I had to replace it). I've read some more "self-help" type books, which I never did before. I may not be in school, but I love what I'm learning from reading!

Not being able to work has been frustrating for me (Although this past week I worked two days with my dad doing the 2nd level of the parking garage for the Philadelphia Temple. If you ever drive there you can think of me and my dad 😉). I think this fall I'll continue to do some work with him, but it is tiring so it's not like I can do it every day (For those who don't know, my dad has a parking lot striping business). I could do work that would involve me not having to be around a lot of other people but those types of jobs are not very common. So for now I'll make some money with Dad when I can and wait until an opportunity comes along or just wait until I'm considered healthy enough to get a normal job. Sigh.

So what's next? I feel like I get asked that question a lot. My answer is honestly- I don't know! I still don't know what the next step in my life will be and that's kind of scary. I've always had some sort of plan but right now I'm so unsure. Go back to school (not BYU, that ship has sailed)-but study what? Work? Something else? And when? When will I be declared free of illness and can join society as a normal person who doesn't have to constantly worry about germs anymore? I don't know. All I know is that I need to trust that God has a plan for me, that His timing is perfect, and I need to continue to be patient through this process. He has watched over me, blessed me, and healed me so I know He will continue to take care of me in the coming months and years of my life.

As always I am so grateful for the love, support, and prayers! Thank you thank you!

XO,

Megan

Life Update - Four Months Post-Transplant

I can't believe it's already been FOUR MONTHS since I got my bone marrow transplant. It really is amazing and humbling to think about where I was health-wise not so long ago compared to how I'm doing now (a lot better!!). God is so good.

Me looking out over the ocean, thinking about how far I've come...LOL (also check out that hair growth!!)

In the beginning of June I was able to take my feeding tube out which was EVERYTHING to me. Me and the tube had a love/hate relationship, that's for sure. I only needed to have it replaced twice in two months (I've said in earlier posts about how much I hate getting them put in) which is really good. The one time I had to get it taken out and replaced because it was clogged and we literally tried unclogging it at home for THREE HOURS. That was not a fun time. I was so grateful that it provided me with the nutrition I needed to stay alive but my gosh I missed eating without it in! With it in I had to take more time to chew and swallow and just trust me, life is way better with it gone. With the help of an appetite stimulant, I had enough of an appetite to finally eat enough without needing the extra nutrition from the feeding tube so Momma pulled it out and we celebrated. Being done with the feeding tube was a huge step forward in my recovery!

I was really feeling a lot better for a while. I had a good amount of energy and I got up to walking a mile and a half around the local park with my mom almost every day. However, towards the end of June my ANC took a big dip from like 2,000 to 400 and I had a little obnoxious virus for about two weeks. It wasn't anything I had to go to the hospital for, but I just felt really tired and that was a huge bummer since I'd had all that energy earlier in the month. I had also stopped taking my appetite stimulant around the same time so my appetite fell too. It was just not a great couple of weeks. Since then, I went back on the appetite stimulant, have had more energy, and my ANC skyrocketed to over 4,000 (although that number is always changing). I'm not going on long walks everyday anymore. I've decided to take it a little bit easier than I did initially.

Me feeling tired and laying around. This is my spot on the sofa. Everyone has one, right?

The best little cuddler 

On June 26 I passed my three month mark since transplant. At that time I got to stop taking this one med that I had to take 12 pills of everyday. I was so so relieved to be done with that one! Another thing that changed is that I don't have to wear masks in public anymore (unless I want to or feel like that's the safer option) and people who come over don't have to wear masks anymore either. I still have to make sure I stay away from people who are sick or who have recently been sick. I especially have to stay away from people who have been exposed to chicken pox or shingles. That hasn't been a problem so far though. So no huge changes, but still I'm moving forward in my recovery.

Celebrated three months post transplant with Custard Shack- DUH

I had this really weird side effect go on with my nails that has never happened to me before. My nails were growing new ones underneath and it was so weird and ugly and painful! My doctor said it was a side effect of malnutrition because I hadn't been eating normal food for like two and a half months. So I got myself to a nail salon and fixed that with some fake nails for now.

EW and OW

Much better! 💅👍

My last doctor's visit went really well and they are very happy about how things are going for me. I admit that I don't really understand what's going on in my body and so I just listen to what they say to do. What everyone says is that I have the immune system of a baby...cool. My body's ability to fight bacteria and viruses right now is limited and so that's why I have to take so many precautions. I'm thinking, though I'm not 100% sure, that it will take until the end of the year before I can be in larger groups of people.

I have found ways to keep myself entertained throughout this healing process. I am one of those people who loves to-do lists and checking things off. On my phone I have a list of things I do daily, today or soon, and whenever. Some of my "daily" things include stretching, reading the Book of Mormon, drinking three water bottles, and things like that. The "today or soon" list varies and the "whenever" list includes things like listen to a podcast, read, and edit music library. My to-do list really helps me to feel like I've done something with my day and it motivates me. Plus it feels so dang good to click the little box and get a check mark (do I have a problem??🙃).

I love to read and so I'm doing a lot of that as well as going in the pool. I've been able to go out and do some fun things too since passing the three month mark like going to the movies (I've seen Avengers: Endgame, Aladdin, SpiderMan: Far From Home, and The Lion King), shopping, or going out to eat at off peak times. I'm just happy to get out of the house sometimes.

I even get to go to church and sit in the hallway sometimes. That's a new discovery and I will be taking advantage of that.

Does this girl look like she needs a feeding tube? NO.

I feel very blessed that my recovery has been as smooth as it has been so far and I hope and pray it continues to go that way. I am definitely learning patience through this process. It is hard when I feel good enough for normal life but my blood work says I'm still recovering. As I've taken things a day at a time, really the time has been going by so fast!

Thank you for your continued prayers and support! When asked how I'm doing, I am happy to report, "really good!"