IamA I have been cancer free for 5 years. I received an anonymous bone marrow transplant that saved my life. AMA!

How do you respond to people calling you "brave" or "strong" in reference to cancer? Because at least in my experience here on reddit there are a lot of people who don't like those terms because it's not something you can really avoid when you get it and those adjectives aren't really accurate because it's just surviving.

I mean no disrespect by any means, just never had the opportunity to ask someone.

That's a great question. I'm not actually a big fan of people calling me brave and strong. I got it a lot when I came back to work and I just took it in stride but it is true. I did what I believe anyone would have done if they were in my situation. I had a daughter that needed her mom and I had a family who would have been devastated if I had passed away. Many of the other cancer survivors I have met through all this felt the same way about the references.

It's hard to really get my point across but I see it as this "strength" and "bravery" is in all of us when we are faced with adversity.

Thanks for the question!

I know you said you aren't a big fan of people calling you brave and strong. But I think that is part of what makes you brave and strong. You did what you needed to in hopes to get better for your daughter and family (and partly for yourself too I'm sure). But some people don't, some people just give up and wait to pass away, immediately defeated.

I understand you don't see it as strength and bravery, but others do and I'm sure some take away from your struggle that they too can hold on, try, face adversity, etc. I hope that makes sense, and I'm glad for you and your family that you are cancer free!

Edit because: word escaped, had to chase it down and put it back.

It does make sense and I appreciate it. Thank you! Sometimes I need to take a step back and look at things from the other side.

How was your experience with the marrow registry?

Mine was absolutely terrible, and i still beat myself up about it to a degree. I was identified as a match for a dude, and due to their utter incompetence, he died while i was still trying to fix their fucked up incompetence and donate to him.

They delayed my potential donation by over 6 months by

• Losing my paperwork 3 times
• Never answering the phone, and not returning my messages
• Flagging me as "unresponsive" despite everything being the opposite
• sending my bloodwork to the wrong hospital, who then had no idea what it was

In short, they fucked up the paperwork in about every way possible, which prevented me from donating to my match. In the time in between this, he died.

I cant say he died because he didnt get a donation, but not getting a donation sure didnt help him get better either.

fuck.

As someone who has donated through the National Marrow Donor Program, I will say that at times it seemed a little scattered. I donated in the summer of 2008 in the Washington, DC area, so my memory is a bit fuzzy at this point. I do recall however, that the woman who was my point of contact had to do a lot of back and forth with the place that took my donation (I did peripheral blood stem cell donation, which is the direction things are going, rather than marrow) in order to arrange testing to make sure I was healthy enough to donate. Then she had to set up a visiting nurse come to my home to give me the filgrastim injections to get my body to produce more of the PBSCs (this was for 5 days before the donation). And that had to be coordinated with when I could then go do the donation.

The other thing to keep in mind is that sometimes the patient is actually too sick to receive the transplant. I think my donation got pushed back for a while because the recipient took a turn for the worse. As his general health improved, we then had to go through the testing/paperwork rigamarole again.

It's several moving parts, and it seems like they try to work with whatever hospital/clinic is nearest to you in the region, so I can see if your point of contact was disorganized, they could have easily screwed up where information was sent. It sounds like in your case, that person royally screwed up on a repeated basis, but the steps that go into giving the donation while trying to be as convenient as possible for the donor do seem like a fiasco waiting to happen if the organization happened to have a disorganized person doing that job.

What you said about the patient is true. One of my friends I grew up with as diagnosed around the same time as me and was treated at the same hospital and on the same floor as me. His brother was a match and they had the whole thing scheduled until he took a turn for the worse and ended up passing away.

I'm so sorry! I have to say that I have no experience with the marrow registry. I was a recipient so I was only told at a follow-up appointment that they found a match. I wish I could give you more information.

Sorry again about the mess up. Please don't beat yourself up because it wasn't your fault. You did the right thing!

im glad from the recipients perspective it wasnt so bad at least :( No false hope, etc

No, not at all but I can sure understand the frustration. I would probably be that upset if I was in your boat. From from my end, it's good to know there are others out there willing to go through the discomfort to help another.

If you had the chance, what would say to your donor?

I actually got to find out who my donor was after 1 year. She is great! I wrote a very long letter thanking her for saving my life. She was so happy to know that it actually worked. It was great to discuss what each of us had to go through in the process.

How hard is it to register to become a donor and donate? Also what is the recovery time of someone who donate? And one last one, did you ever come in contact with your donor or have that option? Sorry for so many questions I am very curious about the donation process and am honestly clueless as to what it all entails.

No problem! I believe the process is pretty easy. I would visit http://bethematch.org/Support-the-Cause/Donate-bone-marrow/ and they will give you all the information you need to register. My donor is planning on doing a reddit IAMA about donating to educate people on the whole process. She said it wasn't that bad. It's no cake walk but it is totally worth it! It really did save my life. Without, I was told the consolidation treatments would not have kept me alive.

For an anonymous donor you generally have to wait one year to meet your donor. That's if your donor wants to meet you and vise versa.

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Great question! I was diagnosed with anxiety disorder when I was in college so this played a HUGE role in my mental state when dealing with the leukemia. I was having panic attacks pretty often when I was in the hospital which was frustrating. I found walking the hallways helped. I got much worse when I went through the isolation after the transplant. I don't like being cooped up especially in a small hospital room. I started getting serious panic attacks and anxiety near the end because I really wanted to go home. Strange thing was that when I got home, the anxiety continued because now I had my daughter to take care of while I was recuperating. I got a lot of help so I made it through it. I do suffer from post traumatic stress disorder which is weird. Certain sounds and smells trigger anxiety.

Other than that I am mentally back to normal. I do look at everyday life differently after this experience.

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Thank you so much. I look at it as I did what I had to do to make sure I was around to watch my little girl grow up. That was what gave me so much drive. I could have never done it if it wasn't for my husband (who actually proposed to me while I was getting treatment) and my mother. My husband took care of my child the entire time I was in the hospital with help from my mom, and my mom was my caretaker once I got home.

What really helped get me through was reading. I am a big reader and what was cool was my coworkers collected money to buy me an iPad so I could read on that and watch stuff. There weren't many channels available at the hospital so I lived on Netflix. :) Oh yea, they also had a stationary bike in my room so I could exercise. It was actually required. After being in bed for so long they wanted us to work on getting our strength back when we were in isolation.

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Well, I had a bucket list made of all books that I would like to read before I die. It's a never ending list. I read a lot of Michael Connelly books and then moved to the Paul F. Wilson "Repairman Jack" series. I ended my stay at UPenn reading the "A Song of Ice and Fire" series by George R. R. Martin. I also started watching Dexter on the Showtime App and any tv show that was suggested to me by friends.

What were your first signs that something was awry? How long did it take for you to get a diagnosis?

Besides that, Congratulations on beating this thing! Cancer seems to be running rampant in my family at the moment, with 3 family members being diagnosed with some form or another all within 9 months of each other, my own scare not included in that. Cancer turns your world upside down, I'm glad to see you come out on the other side! Your daughter is beautiful btw :)

Well, first I started having trouble breathing. It progressively got worse and I was getting very sharp pains on my right side. I went to the hospital and they did a chest x-ray and said they found clots. They never ran any blood disorder tests so they just put me on blood thinners and sent me home. About a week later, I was getting worse and while taking my daughter to school, I passed out. I went back to the hospital only to find out I had developed even more blood clots. This time they ran a blood test and I was told over the phone that they had a slight suspicion that I may have Leukemia. They sent me by ambulance to UPenn right away to verify the diagnosis. I had a bone marrow biopsy when I got there and it was confirmed.

Thank you for the question. My family has been having trouble with cancer as well all of a sudden. Cancer really does turn your world upside down. Good luck with everything! Your family will be in my thoughts!

Edit: The clots that were found were in both of my lungs. The doctors were very surprised they didn't kill me.

Please provide proof that the person in the picture is you, thanks.

Can I send something privately? I certainly wouldn't post someone else's picture so I could do an IamA.

As someone who is registered in the NMDP, and has been for the 6 years since I turned 18, thank you for letting me know that it does work, and that people do survive because of the program.

Question: How long did it take to find a match?

I was very lucky because I believe it only took about 2 months. There were others at the hospital who have been through many consolidated treatments and were still waiting for a match. Thank you so much for getting registered! It really is a life saver!

No questions, I just wanted to say congrats and good luck! My dad had a BMT Nov 15, 2011, there was no match for him on the registry, but he was lucky to have a cord blood match. My family became active in the registry process soon after we found out he was in need of a transplant. My boyfriend has been a match for two young kids with Leukemia, but he has not had the chance to donate for either yet. Thanks for doing the AMA and spreading the word about the registry :) ETA: BMT was 2011 not 2012 - time flies, geesh!

This is outstanding! How is your dad doing? I did put this IamA together because I do believe it's important to spread the word. I was very lucky to find a donor as quickly as I did. Many others are not so lucky. Thank you!

He is awesome. Now allergic to fish and cashews (much to his dismay) and still has his lactose intolerance. 1 year post transplant he was off all transplant related medications. About 18 months post transplant he got shingles and due to complications with that he is on two medications for the rest of his life. Otherwise he is healthy, happy, and he and my mom have retired and now travel the country in a motor home.

Wow, so he developed allergies to fish and cashews from the transplant? That is crazy. I must say though, that is weird about the shingles because I got the shingles too about 4 months ago. I never even heard of them! They are awful. Glad to hear he is healthy and traveling all over! Must be fun!

Yep, he had no allergies before hand and after he had those 2. There could be more, he just doesn't know it yet. They are terrible! I thought it was just unbearable itching, but he was having muscle spasms and a LOT of pain (still does) he is on an anti seizure medication now. I hope you didn't have any lasting effects from it! http://rvfootloose.us/journal.html - that is their public blog, if you're interested.

Thank you for the link! I'm very interested.

I had no real lasting affects. I did suffer from severe pain for almost 2 months. Mine were on my scalp and part of my face. Almost had some form on my eye which I heard is very bad. I was on anti seizure medication too!

What exactly goes into being a bone marrow donor? How does one prepare to donate, and what exactly would donating entail?

BTW congratulations on being cancer-free!

Thank you! The best source of information I can give you would be to visit http://bethematch.org/Support-the-Cause/Donate-bone-marrow/

I don't know much about becoming a donor other then it's pretty easy. It's just a cheek swab. I will see if my donor would like to come on here and answer some of these questions.

I am a registered donor. Just waiting for a match. I really hope someone can benefit from my bone marrow.

The waiting is hard. My mom and my brother are registered. Neither have been picked. My mother is now too old to donate and I know she was hurt. It's okay because at least you are in the registry and you never know when you could get that call. Thank you for being registered. :)

Im only 19 so I have a while to be registered! Im so happy for you. Not everyone is as lucky as you. :)

Thank you! I know I am very lucky. But people like you are the reason I am alive! Thank you again for registering!

Congratulations on being cancer free. My Grandfather runs a support group for Leukemia and Lymphoma patients, and it's so touching to see how mentally strong these people are.

Thank you! That is great that your grandfather runs a support group. I can say from first hand experience that those support groups are very helpful! People tend to forget that the physical part of the cancer treatment is really nothing compared to the mental part of it. I suffer from post traumatic stress disorder that I really didn't know anything about until after this experience.

Also support groups are great for the caretakers of the patients. They do go through a lot.

My cousin's life was saved by a bone marrow transplant. I actually wanted to sign up to be on the donor list so I could repay the favor, so to speak. When I went to the hospital I found out that you had to be "typed" first to see what kind of marrow you had. Makes sense, but they wanted me to pay 200 bucks to do it! Do they not want donors? Because I know they are minus at least one because of this nonsense.

I do not personally know much about this but I can see if I can get my donor to answer this or someone who has had experience with the donor program could talk to this. I'm sorry you had to go through that.

I heard that people who recieve others bone marrow start to get the personality of the donor, have you felt any changes since? Food tastes, loves and hates?

That's an interesting question. One of my coworkers thought that happened but no, I haven't felt any different and no changes to what I like and don't like. The cool thing is that I have my donors DNA and her blood type!

Haha if you start developing skills in baking, let me know!

Jeez! I did bake some really good cookies but they were only chocolate chip. It wasn't that hard. If I do anything super fantastic I will let you know!

How does it work? Do they take out/cut my bones and give it to you?

I'm not exactly sure what happens on the donors end. They should have information on http://bethematch.org/Support-the-Cause/Donate-bone-marrow/ that will help you. :)

Also you can read what my donor wrote on this thread. She's CupcakeAly

What kind of treatment (other than the bone marrow transplant) did you receive? How long did you do that before you received the transplant?

Congrats on the great news by the way

When I first arrived at the hospital I started a pretty crazy chemo cycle for a week. I don't remember the actual names of the chemo they gave me but I remember one was called "the red death". After that week of chemo I had to stay in the hospital for about 5 weeks until I was strong enough to go home. Thoese 5 weeks I would receive blood and platelet transfusions on a regular basis. At the end of the 5 weeks I had a bone marrow biopsy to check for any Leukemia cells. You had to wait a few days for the results. If they found any, you had to do the month all over again so I was really freaked out when I went back to UPenn to get the results. After that I had these chemo treatments that were called "consolidation" treatments. Those were done every few months at the hospital. You got chemo twice a day for a week and then you went home to recuperate. Those were tough. I only had one done and when I got home it was like a hit a brick wall. After the first one, I believe it was a month later, they found I had a match.

Thanks for the response!

As grueling as it all was, do you think the chemo and the transfusions would have had any positive results on your cancer had you not been lined up with a match for the transplant first? Or was it too early in the process to know?

Very good question and one I asked my doctor after I had the transplant. I was told that the treatments were never going to cure me. I had a very strange form of AML (apparently there are many different types depending on the chromosomes that were affected) that does not respond to the consolidation treatments. They would have kept me alive for a while but not cured me.

Thanks again for responding and for doing an AMA. One final follow up question; You said that your particular form of cancer wouldn't have been cured by all of the chemo. Knowing that, would you still recommend chemotherapy to other cancer patients as opposed to possible "Holistic" type remedies? Do you think chemo is a viable form of cancer treatment to a large percentage of cancer patients?

Very interesting. After some thought, I would recommend chemotherapy depending on how severe the cancer is you have. Mine was acute which meant it was a very fast spreading cancer so I didn't have much time to do any research on holistic remedies. Chemo does great to attack the cancer cells immediately. Now, there is a chronic version of Leukemia which they don't treat so aggressively since it pretty much stays dormant until it feels like acting up. I would take a more holistic approach to that version.

I didn't even know that part Ranspazzo. I never realized how important the BMT was for your treatment. I read that often for AML, they'll get the cancer cell levels down to undetectable and then do a transplant to 'cement' it so I thought maybe it wasn't as vital as it seems it was. Yay! :-)

Yea, I wasn't aware of it either at the time. I remember looking back at my journal that they told me the bone marrow transplant was very risky. It seems early on they were shying away from doing the transplant until they saw that the chemo wasn't working. I can't say everything went smoothly with the transplant. I did have many set-backs but in the end I'm glad it was done.

I'm sure that i am late to the game but just wanted to say the picture of you and your daughter inspired me to signup!

Great news!!! Thank you so much! :)

Hey I signed up for the marrow list here in europe, and I was wondering what is it like to get the marrow into your system? Do you know anything about this? Also well done on getting rid of cancer

The process to receive your bone marrow is really horrible but the actual day I got my bone marrow it was just like getting a blood transfusion.

To get the transplant, I had to go through a week of chemo and full body radiation. Doing this removed my entire immune system. I went through a lot of sickness and fatigue. Then I received my transplant. After I got the transplant, I was in isolation for a month. I was on a special floor at the hospital for transplant patients that was sterilized. I was not allowed to leave my room and people who came to see me had to put like a special suit on and mask. It was very boring. After the month, if your numbers were good, you got to go home. Once you are home, another month of isolation.

My dad had AML 5 years ago and is cancer free now. Did your body reject any organs? His body is still rejecting his tongue, it is some disease that I will not try and spell.

It is so good to hear you are going strong. Our whole family is still getting rocked by the whole experience.

So good to hear your dad is cancer free! Our family is still dealing with the whole situation but it seems to get a little easier every year.

Now, my body didn't reject any organs but I do have what they call GVH where my immune system is fighting my donors new immune system. It can be serious but mine isn't too bad. I have very dry skin and sometimes breakout with rashes. I also have very dry eyes. These are usually the norm and will most likely never go away completely.

Dad has GVH too. He used to be quite tanned (we are Caucasian but have some Spanish or something somewhere in our genes) but now he is white and pasty. I hope it goes well for you. I wish I could do something for you, but I guess all I can keep doing is donating to cancer charities and shaving my head for money.

You doing so much now by sharing your dad's story here! Doing everything you do, no matter how big or small, is making a difference. Thank you!

Someone was a match for my best friend. It gave him to extra years of life. I wish I could thank the person, those two years were a gift. I have joined be the match. I was sent paper work for further test but I wasn't a close enough match

I'm so sorry about your best friend but glad you got those extra two years. It makes a big difference. Thank you so much for joining be the match. I remember my brother got tested to see if he was a match and he was heartbroken when he found out he was not a close enough match. From what I remember, there is like a 5 point system and mine was a perfect score with my donor. My brother's may have been a 3 or 4 and at UPenn they don't usually accept anything under a perfect match. It depends on the hospital and probably the situation.

If you don't mind me asking, what did your best friend have?

No real question. Just wanted to thank you for sharing your story in this public forum. I volunteer for DKMS/Delete Blood Cancer and I really think we need more people getting their stories out there because a lot of people are terrified of the idea of donating their bone marrow and they have no idea what it really entails, and what it means for the person who receives it. But, there are lots of people who come up to the booth and ask questions and I have never had someone say no after hearing the full explanation and really understanding how unbelievably important it is. One of my lifelong dreams is to be called in as a donor but I apparently have pretty run of the mill genes and it hasn't happened yet- in the meantime I just keep getting people signed up. Also, I love your picture, more people need to see it and really understand how vital bone marrow donations are.

Thank you so much. Everything you said is exactly why I did this. I wanted people to know a success story and that registering is very important. Peoples lives depend on it. I wouldn't be here if it wasn't for the amazing doctors and nurses who took care of me but especially my donor. Hang in there, you never know when you just might be picked! Thank you for all you have done with volunteering and registering!

Don't forget to thank your lab personnel too! We're the ones who have run all your tests, matched your bone marrow to that of your donor, matched and provided all your transfused blood and platelets... your doctor even used the tests we ran to diagnose you! Sounds like from what I'm reading your donor was even one of us! :D

That is very true! Sorry to forget the lab personnel. They work behind the scenes and don't get the credit they deserve. Thanks for brining that up.

Mostly I think we all signed up to be lab techs knowing there was no glory in it. Best of luck in the future and I wish you many, many healthy years to spend with your adorable little girl. :)

Thank you so much and thank you for doing what you do. I will make sure to thank lab personnel and make others aware of their good work.

Maybe you need a Multi-parameter patient monitor. http://www.medicalequipment-msl.com/htm/multi-parameter-patient-monitor/ In medicine, monitoring is the observation of a disease, condition or one or several medical parameters over time. It can be performed by continuously measuring certain parameters by using a medical monitor (for example, by continuously measuring vital signs by a bedside monitor), and/or by repeatedly performing medical tests (such as blood glucose monitoring with a glucose meter in people with diabetes mellitus). Transmitting data from a monitor to a distant monitoring station is known as telemetry or biotelemetry.

WOW! That is very interesting. I have never heard of this. I will do more research on that. Thank you for the information.

How do you feel that surviving cancer has changed your views on life [if at all]?

Good question. Cancer has made me look at life very differently. I don't live life any differently but I sure don't take life for granted anymore. I was very healthy when I was diagnosed and it made me realize that anything can happen to anyone at anytime. I just live life to the fullest and make sure I'm the best mom and wife I can be. :)