I was diagnosed with acute myeloid leukemia in 2011 and in order to get rid of it I had to go through a huge amount of chemotherapy to kill my bone marrow and transfuse my brother's stem cells into me to make new, non-cancerous bone marrow.

PROOF: here is my blog that I wrote in while going through treatment

Edit: More proof: this is me getting my new stem cells! Also some pics of me and my SO going through my treatment and recovery: http://i.imgur.com/7JFkVMb.jpg http://imgur.com/m8qHC6l http://i.imgur.com/UGjpcit.jpg http://imgur.com/1XgoCgQ http://i.imgur.com/hm6wavZ.jpg

Edit2: just to clarify: the stem cell transplant did not cause my infertility, it was the high dose chemotherapy that caused it. The stem cells allowed my body to make new bone marrow that wasn't cancerous to save my life.

Comments: 264 • Responses: 76  • Date: 

addsomezest136 karma

How on Earth were you able to keep that genuine and gorgeous smile through all that?

HI_SavvySavy79 karma

Thank you! I always kept up my positive attitude throughout the entire process. I had a great support system and since I was never one to complain I always found the bright side to each situation. It was definitely tough dealing with mouth sores, no energy, no taste buds (which led to everything tasting horrible!) and the chemotherapy but I knew that I had to keep smiling to help my family and loved ones through it all!

addsomezest23 karma

You're welcome! Has you sense of taste come back and did you lose your sense of smell as well?

HI_SavvySavy42 karma

Since the chemo made my taste buds fall off only my sense of taste went away. However, since I was so sensitive to smells (which would make me throw up) I think I would've been happy to have no sense of smell!

addsomezest19 karma

Thank you for responding. Will they ever come back?

HI_SavvySavy37 karma

Yup! Over the past year my taste is back to normal and I can actually stand cooking and being in the kitchen now without wanting to throw up! I still have dry eyes and mouth so I have to wear glasses and not contacts.

addsomezest13 karma

Good! I'm glad you're able to enjoy food again. What was the first thing you ate when you regained your taste? Also, you look levels in glasses.

HI_SavvySavy24 karma

Let's see...I went through different cravings throughout my treatment. Before and after my transplant I wasn't allowed to eat any fresh veggies or fruits that could be peeled (bacteria is hard to wash off and could get me sick) so I REALLY missed sandwiches with lettuce, tomatoes, bell pepper etc. Also I could have smoothies or berries so I was stuck peeling apples, pears and kiwis until I got sick of them. Once I could taste...well everything was HORRIBLE tasting...which I guess was better than cardboard. Eventually I could eat real food without gagging but I was extremely excited to eat turkey sandwiches with avocado :D and of course ice cream and my other staple food (moose tracks to be exact)

addsomezest12 karma

Moose tracks is a great ice cream! Maybe you could try some guacamole too! Good luck to you, keep that beautiful smile on!

HI_SavvySavy6 karma

Thank you I will! And I am very happy to have my full appetite back again! Finally able to gain some weight!

mybaby5184 karma

Ha! I too am a 24 year old going through menopause. I have ovarian cancer and have had a hysterectomy.

The hot flashes. Omg the hot flashes.

HI_SavvySavy61 karma

OMG! I'm so glad I'm not alone in this! I love having cold packs around me to put on my head

knapplc60 karma

What a gorgeous smile you have. My wife had that hairdo for a while, too. It doesn't last forever, and it makes you realize there's more important things than how your hair looks.

HI_SavvySavy47 karma

Thank you! Yeah hair stopped being important part of my life and I focused on decorating my head instead with scarves and such :) I had fun with it and even now I am keeping it short.

A520451 karma

Could you explain a bit more on how a stem cell transplant made you go through menopause?

HI_SavvySavy81 karma

Basically the docs pump me full of high dose chemotherapy to kill off my bone marrow since it was cancerous. It is the high dose chemo (mine was called Bulsofan) that causes menopause because my ovaries absorbed it. Since chemo is poisonous my ovaries just shut down. My gynecologist gave my birth control that put me into pre-menopause, in the hopes that my ovaries wouldn't absorb the chemotherapy as much but it's been two years, no periods, a LOT of hot flashes and no hormones. I'm going back to MD Anderson this week to get my fertility tested (they had to wait 2 years) so ill know 100% soon if I'm infertile. I have a feeling I am.

smcgrr31 karma

What are the meds your gyno gave you called? I think I'm on the same ones for abnormal uterine cell growth. The hot flashes are a bitch! I can't imagine going through that and the mood swings in addition to all of the side effects from chemo! I'm glad you were able to save some eggs for when you want to have kids :)

HI_SavvySavy28 karma

I was given Lupron prior to my stem cell transplant. Hot flashes drive me crazy!!! And they always pop up when I'm already hot. Thank you and I hope everything goes well with the pregnancy. It will be high-risk so I try not to think about it too much :/

smcgrr18 karma

Yep exact same! I have pcos and severe endometriosis, so I have similar worries. At least we have a shot at it :) good luck

HI_SavvySavy13 karma

Thanks you too!

[deleted]5 karma

[deleted]

HI_SavvySavy4 karma

So far no one has said I can't carry my own baby. I would be a high-risk pregnancy and have to be in Houston (where all my doctors are) to be monitored. I have around a 40-50% chance of success with the embryos they stored before I had my transplant.

johnnynutman19 karma

so how did the stem cells cause it? it sounds like it was the chemo that caused the meopause.

HI_SavvySavy19 karma

It was the chemotherapy that caused it. I blame the stem cell transplant because in order to get the transplant I had to be blasted with the high dose chemotherapy

IAmAChemist26 karma

I wish you the best in your recovery. As a 23 year old, I can't imagine what you have been going through. I admire your optimism! It is such an important trait to maintain where you are :)

I must say, I find the title misleading and this comment disconcerting. I grant that the stem cell treatment is intrinsically related to you needing high dose chemotherapy, and thus is the reason you may be going through menopause. Nonetheless, many people still are wary regarding stem cells. I fear those kind of people will use this kind of a story as bad propaganda towards stem cells.

We must break down the stigma on stem cells to allow more funding for research that leads to treatments such as your own!

HI_SavvySavy15 karma

I totally agree. Stem cell research saved my life! And they used my brother (who is 28 now) and it didn't affect him at all. People just don't understand and think to the extreme when they see the term stem cells

IAmAChemist9 karma

I think a lot of it stems from the original interest in fetal stem cells at a time when abortion discussions were at a rolling boil. Unfortunately, those deep rooted sentiments are hard to shake. It reminds me of the irrational fear of vaccines following rumors of autism, or the blind fear of all GMOs.

HI_SavvySavy8 karma

Yeah I understand. Unfortunately the media doesn't talk about the other ways of stem cell research and all the good it's doing without using embryonic stem cells

johnnynutman5 karma

what would've been the alternative to chemo? isn't it something that's usually done for leukaemia anyway?

HI_SavvySavy8 karma

Since leukemia has no tumors chemotherapy is pretty much our only option (as opposed to radiation). I know for AML transplants are an option but I also know it depends on the type of AML. My doctor told me chemotherapy would not get rid of the bad gene that is causing the problems (my white blood cell count was extremely high). My only option was to get a stem cell transplant or get chemo every month until I died :/

postemporary6 karma

I hope you aren't infertile. Did you store away some eggs for future bun making?

HI_SavvySavy29 karma

My fiancé and I have three embryos in the freezer! Just waiting for my body to be ready for the pregnancy :)

sprmacholo1 karma

only three? What is the success rate of the procedure, isn't there a risk of running out before it takes?

HI_SavvySavy1 karma

Unfortunately since I had already gone through two rounds of chemotherapy my eggs weren't in the best shape. Of the 7 mature eggs only 3 were able to take the fertilization. It's not quite a 50% chance that the embryo will take to a pregnancy. They usually do two embryos at once to hope that at least one will take. I try not to think about the low odds...stressing about it won't make it change any.

vessel_for_the_soul6 karma

Dont lose hope, I have a male friend who went through treatment, tested infertile. He has 3 boys with his wife. Maybe I dont know what I am talking about but its not about being correct.

HI_SavvySavy5 karma

Honestly it's not 100% that I'm infertile. I could get my fertility back since I am so young...just not sure since there just aren't a lot of cases like mine to compare it to

DaveYarnell2 karma

I am sorry to hear that, and I hope that in the future perhaps stem cells can be used to reverse this or some other cure will be available.

HI_SavvySavy6 karma

It's amazing what they are doing with stem cell research these days! They have done so much in the past decade and I think it'll be a huge success for other cancers one day! I know that without it I wouldn't have lasted 5 years..

flume42 karma

I'm gonna be that guy.

You look like a very happy, good-humored person, so I'm sure those who are close to you have made some jokes. What's the funniest cancer-related thing anyone has said to you?

HI_SavvySavy85 karma

Honestly, I think I was the one cracking jokes and pulling the C card whenever possible. At my brother's graduation party his band was playing and I wanted them to cover MIA's Paper Planes but the bass player didn't want to. So in front of like 50 people I said "I have cancer and I want you to play that song...so do it!" Everyone was like O_O and I just laughed. It was almost like they didn't know what to say to that..like I said a taboo word. Nonetheless, they played the song and I was stoked :) haha.

pepiphany18 karma

So you haven't posted proof yet but...

Do you have any children now?

How do you feel about not being able to have children? and if you want them, what will you do?

HI_SavvySavy41 karma

Sorry this is one of my first posts. I will get some proof up!

Right before my transplant I had just enough time to go to a fertility clinic, do two weeks of hormone shots in my belly, then have the doc extract the eggs from my ovaries then fertilize the eggs (of the 10 that were extracted 7 were mature enough) with my SO and 3 were able to get fertilized. They then freeze the embryos until we are ready to try to get pregnant!

Edit: it was very scary with the idea of not having children. I had already gone through two rounds of chemo and even with 3 embryos it's not 100% that I will get pregnant.

Dustypeace23 karma

Lucky!! I wasn't able to freeze any eggs - the process would have killed me. Within the next year we are hoping to finally adopt. We have had to deal with discrimination since I had cancer, they are not quick to give you a kid. I'm 10 years post transplant from ALL. Good luck!

HI_SavvySavy12 karma

Oh wow! Congrats on staying healthy! It's unfortunate that they are so unwilling to look past your experience with cancer. Honestly I think it makes for a better parent if they can see how you have survived and remained positive and healthy. We have a better perspective on life to teach to our kids! How old were you when you went through your treatment? And how come it would have killed you?

Dustypeace10 karma

I was 31 and was dating my now husband for a year. With my ALL, they were worried I would bleed to death. The the Leukemia your blood cells are not normal, so I guess they wouldn't clot. I wasn't even allowed to use the pushpins in my hospital room to decorate, my friend had to do it. Driving from the clinic to the hospital my mom wanted to stop by their house and pick up my dad from the train so we could all go in together. The hospital, it turns out, was calling around trying to find where we were; they were afraid I was in an accident. What really sucked, as a female, was they wouldn't let me shave my legs in the hospital (because of the razor) and I had to wait for chemo to kick in and the hair to come off. Then we were able to easily pull it out using hospital tape like waxing strips (the amazing things you find to do in a hospital when you're stuck there for over a month). My niece got diagnosed with AML this year, and she used the tape waxing thing too. She also was not able to save any eggs, and she is in her early 20s and was in college. You should be my PR person for adoption!

HI_SavvySavy7 karma

I totally did that with medical tape the second time I lost my hair. It worked great! I remember when my platelets were so low I wasn't allowed to floss, shave and had to be super careful like you! Even at MD Anderson the doctors there didn't have a whole lot of information about young adults going through stem cell transplants and fertility. I was really fortunate that a random employee at Queens Medical Center on Oahu told me, when I was first diagnosed, that I should get my eggs harvested. I was extremely lucky that he told me because no one else really mentioned it or knew the process of it. I barely had enough time between chemo rounds to get it all done. I'm sorry about your niece but all that matters is that she is okay! I would totally vouch for you if you need me to!

pepiphany8 karma

Well I wish you the best of luck with everything and ine.more question: Is the early Menopause a common thing or not? and how did you take it when you found out?

HI_SavvySavy8 karma

With stem cell transplants that is expected although the doctors at MD Anderson didn't know too much about it with young adults since they normally deal with young kids or older adults in their 60's. It wasn't 100% that I would become infertile but they only knew of 1 or 2 patients that were able to get pregnant again. Honestly, the worst part of menopause ate the severe hot flashes that I still get! I am still really hopeful that I get pregnant with my three frozen babies but if that doesn't happen there are many other ways for us to have kids.

ImALadyOkay5 karma

I had a rib removed recently and was given narcotics to take for a few weeks afterwards. I'm extremely sensitive to medication and after 2 weeks of pills I started weening myself off and experienced withdrawal symptoms, the worst being hot flashes and cold sweats. It was honestly one of the worst feelings I've felt. I feel for you!

HI_SavvySavy7 karma

Cold sweats are so terrible especially at night! In the beginning I would have a hot flash and then instantly be freezing cold!

ImALadyOkay3 karma

The worst! They kept me up all night. I took tons of showers in attempt to control my body temperature. It didn't really work but it was better than laying in bed and throwing the covers on and off.

HI_SavvySavy4 karma

Ugh I hated waking up at night DRENCHED in sweat!

keepinithamsta3 karma

So your children are cryogenically frozen at the moment?

HI_SavvySavy3 karma

Frozen babies ftw

eQuASiAN11 karma

I love your spirit. You seem to be he true epitome of "when life gives you lemons...." and I'm happy that according to your blog, you felt 100% better on my birthday! woohoo.

All the best of luck I wish you luck for your frozen future babies.

HI_SavvySavy17 karma

Thank you! I'm really hoping that my frozen babies work out...my fiancé and I are looking at test driving two of them in the next couple of years. So excited! But nervous too :/

cmyk30004 karma

I wish you guys the best of luck! You look lovely throughout all the photos. Those must have been scary and trying times. I hope your next chapter with your SO brings the pitter patter of little feet!

HI_SavvySavy4 karma

Me too! Thank you! I'm excited for these next couple years and to have a baby bump!

KittyKathy9 karma

How are you today? I hope everything turns out perfect and that you can be able to have children! Also, you are very pretty!

HI_SavvySavy8 karma

I'm doing good! My hot flashes are giving me a break today but I expect them to be back soon. I'm going for my two year check up next week at MD Anderson and hope the good news continues with clear results :)

Fauxbidden9 karma

I'm a lupus patient and I'm going through / have gone through the same thing! We should have coffee and talk!

HI_SavvySavy8 karma

I would love that! There isn't a big cancer community on Oahu (Hawaii) which is why I want to move back to Houston, Texas

allbiznessa7 karma

You live in Oahu?!?!? I'm on the Big Island, a recent survivor of Hodgkins Lymphoma. I was diagnosed at age 17, went through chemo and radiation for a year and am now back to normal life at age 24. I graduated with my bachelors in business admin and am applying for a MBA at Manoa for Fall 2014. I'd love to meet you one day and exchange stories. All the best to you! I had just about every awful symptom during chemo and feel for ya.

HI_SavvySavy6 karma

I hope you get in! Ill be leaving the island end of next year but I hope we could meet up before I leave! Did you get mouth sores? Mine were terrible!!

allbiznessa9 karma

Ha, yeah mouth sores and dry mouth. Made it impossible to eat or drink anything. Everything felt a lot sharper and hotter than it actually was. I tried everything for the mouth sores, even prescription stuff to gargle but the only thing that helped was time. Between each round of chemo I had a week or two break so my migranes, sores, dizziness, and back pain kind of cleared up just in time for another round. I barely feel like I made it to the last treatment. My numbers were so low I should have gotten a blood transfusion but I said I felt ok and wasn't too dizzy. I blamed it on not drinking enough water but I just really didn't want a transfusion! I wanted to fight through on my own.

I can't imagine what menopausal symptoms plus going through chemo is like, especially at such a young age. I really wish you all the best and will let you know when I am in Oahu if you'd like to meet for lunch or what not.

Thanks again for sharing and stay strong!

HI_SavvySavy5 karma

My mouth sores were so bad I lost so much weight since I could barely eat anything...let alone sleep. Queens medical center did a bad job at getting me pain medication right away but MD Anderson was on it! As soon as I got a mouth sore they hooked me up with morphine and then a fentanyl regimen. That saved me. I was lucky and only had 3 rounds...how many did you have? I still have a little bit of a dry mouth and I still find it hard to eat bread without a glass of water at hand! I still can't eat cream of wheat or ensure... My first round I had a sore on my uvula. Then my third I had them under my tongue and down my esophagus. I was adamant with the salt swish too! I don't remember much of those days anymore (thank you fentanyl!!)

HI_SavvySavy4 karma

Also I was required to drink 3 L of water daily so it was tough keeping up with that. My blood pressure went down to 70/50 and could barely walk at one point. It's hard to drink that much water!

Cubicool7 karma

Any GVHD?

HI_SavvySavy2 karma

Nope! I have been super fortunate so far and had no problems!

Reed_Solomon6 karma

I didn't know this was a thing they could do already. Neat. Is there any benefit to them being your brothers stem cells? I thought the whole point of stem cells was that they were essentially blank slates scientists could use to create other cells. Anyways hope everything turns out okay and that there's no weird accident that has you turning into your brothers evil twin.

HI_SavvySavy10 karma

Hahaha honestly I have allergies now that I blame my brother for! Actually the doctors prefer your siblings to be a match. There is a 25% chance that your sibling is either a full, 100% match to you, 1/2 match or not at all. My sister was only a half match and they would only look at her to be my donor if my bother didn't work out and if I couldn't find an unrelated donor. With siblings you have a lesser chance of getting graft-versus-host disease (my cells rejecting my brothers cells) compared to unrelated donors. With unrelated donors the doctor looks at 10 markers to match up with your cells, with 3 important markers that must be matched up. If those 10 main markers (especially those 3 important ones) don't match up they can't use that donor. My brother was 100% match, meaning all the hundreds of markers matched up.

ebec204 karma

I'm curious if half siblings would automatically be 1/2 or less?

HI_SavvySavy3 karma

Hmm I'm not sure. But I think the doctors may test them but I doubt they would be a match since they don't have both your mom and dads genes.

glassuser5 karma

Damn. You look good for going through chemo hell. Were you helped at all by the national marrow donor registry (or equivalent), or was your brother just a handy very good match? None of my family was suitable as a donor for my step brother because of their predisposition to cancer, so he had a donor completely unrelated.

HI_SavvySavy3 karma

I hope you step brother is doing well! I got really lucky that my brother was a full match. My sister was only a half match so if my bro wasn't a match I would have had to go to the registry to find one.

tcigzies5 karma

keep fighting! hope everything is going well on your end! assuming you wanted to have children, and if it turns out that youre no longer able to, would you lean more towards adopting a child or would you think of having your SO donate his sperm and have a surrogate?

HI_SavvySavy6 karma

I'm not sure! I've always wanted to be pregnant but I also would want to be a parent to a child in need!

blue_balla5 karma

I didn't know a bald woman could be attractive. Good job!

HI_SavvySavy4 karma

Thanks! I held Natalie Portman as my idol through the whole bald process. She was beautiful bald!

JessRN4 karma

Hi! BMT RN here! It's nice to see someone who is s/p transplant x 2 years! Did you have any significant complications during your first 100 days? Was there anything that any of your nurses did that really made your day better or that you remember now?

HI_SavvySavy3 karma

My best friend is actually a BMT nurse at MD Anderson and I loved it when she would request to have me so I had the same nurse for several days. It makes a big difference having someone to talk to and knows you and not having to explain everything again to a new nurse. Unfortunately I had to move floors and didn't have her anymore but she continued to stop by my room on her days off :) made such an impact on me! The nurses on my new floor were always different and non made a big impact on me.

I was extremely fortunate to not have any problems during my 100 days! No GVHD! No infections! No fever!

PrettyNPinkNetci4 karma

I live in Houston,tx! Just applied for a nursing position at md Anderson! I would love to make a lasting impact on someone who is going through something so unfortunate and life altering!

HI_SavvySavy3 karma

Awesome! I'm so excited to be back for a week and even more about moving back in a year. The community there is amazing and I want to make an impact myself as a Physical therapist and Pilates instructor for cancer patients. Just be amazing and helpful and smile! It makes all the difference.

only1mrfstr4 karma

wow... you are beautiful. The strength you seem to have going through this is amazing.

Also, as a guy, I want to throw a shout out to your SO... if he's your age, it's pretty hard to find someone so young willing to go through so much... and he's standing right beside you. That's awesome.

HI_SavvySavy3 karma

Thank you! He has been amazing throughout these crazy past two years. He took me to the hospital when I was sick (I thought I had the flu) and stayed by my side through the whole thing. Even moving to Texas from hawaii! I don't know where I would be without him :)

alikidisciple4 karma

I am glad that you are doing so well! If you are ever in Austin, just pm me and I will have a place for you to stay. Good luck honey!

HI_SavvySavy2 karma

I'm going to be in Austin next weekend! I have some cousins there that helped me out while I was in Houston :) ill let you know when I'm in town!

orangepineapplez4 karma

What do you think was the most challenging part about what you've been through? You seem like a strong woman! Stay brave!

HI_SavvySavy2 karma

The hardest part was letting go of my career path. I was about to graduate from college and apply to physical therapy school. It upset me to have to put all of that on hold. It took some time but I've allowed myself to plan for the future again and I'm excited for it.

parkfyre4 karma

Congratulations on your transplant! My brother has his bone marrow/stem cell transplant from an anonymous donor in 9 more days. He begins his "serious business" chemo regimine starting Tuesday. Any advice on that part of the experience, or advice to his caretakers for transplant day and going forward?

We are kind of expecting it to get pretty nasty right around the transplant when his body is depleted, and it taking 5-7 days for him to rally back. Anything you can offer up would be helpful!

HI_SavvySavy2 karma

OMG! Good luck!!! It's a tough road but I know he can handle it! For the chemo, do you know what they are using? My big guns was Bulsofan. I had it for 5 days :(

For the transplant day make sure he is chewing mint gum or something like that to distract him from the smell. The preservatives smell nasty and I was lucky someone gave me the gum advice! I loved to be counting forward at that point (to 100 days) and it was nice having a goal to reach. I recommend documenting the transplant with pictures or video. I have that one picture and I wish I allowed my parents to take more!

Recovering from the chemotherapy was tough. Bad mouth sores, no appetite, actually lost my taste buds which made me not want to eat, food smell made me nauseous, and I had no energy. Encourage him to keep walking and moving. Keep cream of wheat, ensure/boost handy (since he can't eat much at least drinking something with vitamins and calories will help)...anything soft! I had to drink sooooo much water afterwards (the immunosuppressant deplete your magnesium so you have to take loads of magnesium and then you need to drinks tons of water to make sure your kidneys so get injured with all the chemicals going through your body). Water, juice, milk, ensure/boost, milk shakes, tea. Doesn't matter! Make him drink! Use a cup with a straw. It makes it easier to drink throughout the day. If he is kicking back and watching TV, make sure his cup is filled at all times.

Look into physical therapy. It's important that he keeps up with moving. We get so weak that it seems crazy to want to move but he is going to need you to motivate him to get out of bed.

Buy TONS of hand sanitizer. Keep everything clean! Wash the bathroom everyday! Wash your hands and his hands constantly throughout the day! Always carry masks. Don't let sick people near him!

Food. Nothing that has a lot of smell. If you are cooking have him be in another room so he can't smell it. Food made me gag from the smell. Blander food but nothing too dry. Dry mouth is a bitch! Since he can't eat fresh fruits or veggies (that you can't peel or cook) I hope he likes avocado. That helped make my sandwiches taste better than just slapping together turkey and cheese. Have a lot of small snacks he can eat throughout the day. Since big meals didn't do much for me ( I would take one bite and be done) it would be better to have small things to nibble on. Get foods with high calories but keep it healthy too. My mom would buy super sugary foods to try and get calories in me which I just didn't like.

It was hard to tell everyone what I wanted or needed. I didn't really know half the time. I enjoyed watching Netflix and being on my couch for the majority of the days. Having someone keeping track of my water helped a lot (I would forget or be too tired to get up). Going outside to the park (when it isn't busy) was a nice way to get out of the house and have a change of scenery. Sometimes, it was just really nice to have someone sit next to me and give me a shoulder to lean on and quietly watch a movie. Be there for him through his hard days...be strong! It was tough for me to show that I wasn't feeling well because my whole family would get stressed, depressed and anxious. Which is reasonable! But it made me feel like I couldn't show them how I was really feeling. Let him know that it's okay to feel scared, tired, sick, whatever! You are there to hold him up! With that note, make sure to take care of yourself too! You can't take care of him if you get sick! Do things that make you happy too (workouts, games, books, caregiving therapy sessions, massages, etc.).

When he is allowed to be around pets you should get a dog. Best thing in my recovery time was adopting a abandoned puppy and she has been a great recovery buddy. I don't recommend getting a puppy if someone isn't there to train it tho. No poop in the house!

Stay strong! Keep him happy and laughing. Give him things to do in the hospital (painting, video games, read a book to him). There are many days of staring at the wall in front of you so finding things that don't require a lot of energy will help pass the time. Bring music! Oh and get him some good pillows to sleep with. Card games are fun too.

He can read my blog too if he wants to know what I went through. Maybe he could start one too? Very therapeutic to write everything down.

I hope that's everything! I might think of things later...there is so much!

Good luck!

tsarnickolas4 karma

First, I would like to say that you have my sympathy, for what it's worth, for your condition, and I hope, for what it's worth, that things turn out well for you.

So, If I'm reading this correctly, it was not the stem cells themselves that caused the menopause, but rather the chemotherapy?

HI_SavvySavy3 karma

Yes that is correct. But it is the chemotherapy for a stem cell transplant that makes it so detrimental

PromptCritical424 karma

How did your brother feel about giving stem cells? Was it painful? Was chemo painful? Did you ever think you were going to die? How did you deal with the concept? Are you an atheist?

I have a close friend who has relapsed several times and is about to undergo surgery once more for ovarian cancer. She's told me several times that she doesn't want to fight it anymore. What can I do to support her? How should I approach talking to her about it. I find myself saying "so how's it going with the hospital stuff?" to avoid mentioning the word cancer. What stuff made you feel better? How did people best support you?

Sorry for the question bombardment.

HI_SavvySavy5 karma

For my brother it was much easier than for unrelated donors. Usually for unrelated donors the donor has to get 40-50 bone marrow aspirations to donate his marrow. Since my brother was a related donor they did it another way; he got shots of nupagen to make his marrow make cells. His marrow made so much cells that they left his bones are went into his blood steam. They then had him lay in bed for 3 hours as they took his blood, filtered out the new cells and put new blood back into him. He made over 1 billion cells! I think I only needed 40 million haha. He was a little achy in the bones and tired after the apheresis but other than that he was as good as new a couple days later! For reasons I don't understand there is a better chance of the cells not rejecting if the donor is unrelated and they take the cells straight from the marrow.

Honestly...dying never crossed my mind. I heard the doctor say that I had to get a stem cell transplant or I would die in 5 years or less (undergoing constant chemotherapy regimens) but I focused on the stem cell transplant. Even after learning about the possible complications that can come with the transplant (like death) I never focused on it and thought I was going to die. Even the day I was diagnosed; if I hadn't gone to the ER I could've died in a couple of weeks without treatment. It just never seemed like an option to me. I wouldn't let it. I am an atheist but I believe that the positive energy that everyone sent me (cards, emails, Facebook posts, gifts, care packages, phone calls) and my desire to stay optimistic really made a huge impact on my treatment and recovery. I took it one day at a time...then when that was too long I would take it one moment at a time. I believe that everything happens for a reason and that whatever the outcome would be it would be a learning experience for everyone. I am thankful to be alive and I am thankful for the experience. I would do it all again if I had to just to meet the people I met while I was there...and to be who I am now.

Someone told me that when she was going through breast cancer she was wondering why her? Why not one of her sisters? But then she realized that she was the stronger one and knew that she was able to handle this situation better than her sisters. She believed that we are all given situations that we can handle; we just need to believe that we can pull through.

I'm sorry about your friend; I can sympathize about wanting to give up because I know how it feels to go through the treatment. I am fortunate to have had only 3 round of chemo therapy...but I know of a girl in my exact situation who went through 11 rounds before she was put into remission! It's exhausting and it really takes a toll on you especially when it comes back. I had a friend who passed away from cancer and she was such a strong person and always continued to be a good person even when everything was falling to pieces. She remained positive even tho she knew that she didn't have any more options. She knew that she had done what she needed to do in the world and accepted the fact that she was going to die. That takes a kind of bravery that I know nothing about.

What I told myself and I like to tell others is to celebrate all the little victories. Like having good counts, or being able to walk or eat or anything! You have to focus on the positive. Tell her that everything happens for a reason and that whatever the outcome she will be a better and stronger person because of it. Let her explain to you why she wants to give up...maybe she just needs to get it off her chest. For me, I don't mind people talking about it. Honestly, having someone look at me and genuinely ask "how are you doing?" made me about cry as I spilled my heart onto them about how I felt. She needs someone to talk to and usually it's hard to open up right away and say she is having a hard time. Maybe have her talk to other patients that are going through the same thing? Maybe take her for a spa day to make her feel good. Maybe she is just needing a shoulder to lean on.

I loved having someone with me at all times in the hospital room. The fact that I always had someone with me reminded me how much they care for me. Massages, foot massages, doing a puzzle, going to the zoo, the museum, or the park helped distract me from feeling bad. Having my dog with me through recovery made a world of a difference too!

I hope some of this helps. I hope she can find something positive to hold on to. I will think of her and hope for good results!!!

Michelle05224 karma

I put my body in menopause hopefully as a way to protect my fertility during chemo (I do lupron injections every 3 months). Oh the hot sweats! Never knew your head could sweat that much. Best of luck in your fight!

HI_SavvySavy2 karma

I did that too! I hope that it works for you! What kind of chemo are you doing? And for what type of cancer?

SloppySynapses3 karma

beautiful girl; gorgeous smile and eyes. your resilience is inspiring!

HI_SavvySavy2 karma

Thank you :)!

cyclistdan3 karma

HI_SavvySavy2 karma

I get in on Thursday! Anything happening next week (of the 18th)?

bplayford3 karma

Sorry to hear about this. My guess is the extremely harsh chemicals in the chemo are still in your body and suppressing it. A friend of mine basically did the same thing to herself with years of drug abuse and went into menopause at 25 and was told she could never have children. When she was 28 her husband found this book "Clear Body Clear Mind" which describes a body detox program using high doses of vitamins and a sauna. She went somewhere and did the program and a week before she finished the program she was pregnant and has now had three kids. I read the book and it makes sense and someone can do it on their own. I don't know where you go for the program but the book explains how to do the program.

HI_SavvySavy2 karma

Wow! Very interesting! I will definitely look into it :) thanks!

cloudwalking3 karma

Do you think it's a good idea to reproduce, even though your children might inherit the genes that caused your disease?

HI_SavvySavy5 karma

Actually the leukemia isn't inheritable. It doesn't run in my family and honestly they don't know where it came from.

rickster9073 karma

Now if you were a 24 year old male going through menopause due to stem cell transplant ..... that would be something. Some.......thing.

HI_SavvySavy3 karma

Hey you never know

RickTrollio2 karma

In your replies, you said that chemotherapy caused this - not stem cell transplantation. Would it be possible to rephrase your AMA to say "I am a 24 year old female and going through menopause due to chemotherapy" People form opinions through experience. There is already enough public worry about stem cell treatment without spreading misinformation.

I hope you prevail.

HI_SavvySavy3 karma

I understand what you mean. I could rather rephrase it to be "I am going through menopause due to the chemotherapy for a stem cell transplant" because not all chemotherapy will cause infertility

DefinitelyRelephant2 karma

So.. could they transplant stem cells into your ovaries to reverse the menopause?

HI_SavvySavy1 karma

Good question!! I have no idea...

mynamewasfuck2 karma

Can you take estrogen to reverse or slow the process at all?

HI_SavvySavy3 karma

Since I have a history of blood clots and got migraines when I was on birth control I can't have any hormones at all. I even tried a non-hormonal supplement that is supposed to pretend to be hormones but without any side effects but it still gave me migraines :/

temporarycreature2 karma

Goodness, gracious, you're beautiful. Keep up the fight!

HI_SavvySavy3 karma

Thank you! I am eager for my 2 year check up results!

I_do_not_like_me2 karma

[deleted]

HI_SavvySavy3 karma

I try not to think about it. I am trying to keep positive through this whole process and just hope for the best. I know that it might not work but I don't think about that. I have names picked out for my kids and my fiancé and I talk about our kids in way that we know will work out. I guess I will cross that bridge when I get there if things don't work out the way I want..

hrpeanut2 karma

HI_SavvySavy2 karma

On a molecular level they all look like Peter

Geezuhs2 karma

I really don't mean to be an asshole, but this title directly contradicts what your second edit tries to "clarify".

HI_SavvySavy3 karma

I'm sorry this seems too complicated for you. Stem cell transplant = high dose chemotherapy. High dose chemotherapy = infertility. By default, getting a stem cell transplant means becoming infertile.

WonderbaumofWisdom2 karma

Does this mean that you will age faster? How will this work?

You're doing things in the wrong order!

HI_SavvySavy2 karma

I hope I won't age faster! I just need to be careful about my bone health since I don't have any hormones to help keep my bone density up. Lots of calcium, vitamin D and exercise!

velocity219e2 karma

Congratulations on the success and ... my sympathies for your alternative woes.

Incidentally you are one of the rare ladies I've seen that actually seems to suit the no hair / extremely short hair look, although I have no doubt you are eager to get back to your normal hairstyle :D

HI_SavvySavy2 karma

Thank you! After keeping it short for a year I've decided to try and grow my hair out. I'm interested to see how it's changed (besides the color, which is now brown instead of blonde). It's been fun with short hair but I do miss it being long!

velocity219e2 karma

I only say this because some women look like aliens with short hair :D

I find it pretty strange too that your hair changes colour though! any idea why that is?

HI_SavvySavy2 karma

Haha! I got many compliments about how nicely shaped my head was. My parents would say they tried hard when I was a baby to roll me to make sure it was well shaped :P

For whatever reason when people lose their hair to chemo it can come back any color or any style (straight, curly or wavy). I'm not sure why that is...my friend once had her hair come back orange! She was very happy when that fell out haha.

Elezeid2 karma

My question is; how are you doing? Are you feeling better now than you were during chemo? Do you feel optimistic about your future?

Good on you for toughing through this. I can scarcely imagine the hell that this must have been for you. I hope that things are coming together nicely for you, regardless of the menopause symptoms. I know this may not be much to offer you through some text on a computer screen, but I'm proud of you!

HI_SavvySavy2 karma

Thank you! I've been doing really great actually. This past year has been all about getting myself back to where I was before my diagnoses. I work at a physical therapy clinic so it has helped me gain back my strength and posture. I finally have energy again and I can actually run without my feet and legs feeling like they are going to break! I am finally looking into the future and excited for what is to come; getting married, having kids, going to physical therapy school, moving to Texas. I know that I could relapse, get leukemia again from the chemotherapy, get skin cancer etc, but I know worrying about it won't do anything but stress me out. I will be happier in Texas for sure so if I ever get sick again I will be in the best place to kick its ass again!

tbrays2424242 karma

No question. Just wanted to say good luck and I hope everything works out okay.

HI_SavvySavy2 karma

Thank you!

DestroyerofWords-8 karma

Of course you wrote a fucking blog. God forbid anyone suffer in silence.

HI_SavvySavy4 karma

Unfortunately a lot of my family is on the mainland (I live in hawaii and most live in Florida) so yeah, a blog worked out best so that my grandparents could keep up with my well being. Don't read it if you don't want to

MoppyFlinge4 karma

Regardless of who reads it, a lot of people write a blog to help quantify what they're going through, to make sense of the things that are happening to them, so they can look back and things that might not have made sense then might have been clarified since and will therefore mean more.

HI_SavvySavy3 karma

Exactly. It really helped a lot of people understand what was going on when I broke it down for them on the blog.

TheManAmongMen2 karma

Hey, just quickly logged in to say best of luck, your spirits brightened up my day :)

Hope all is well no matter what the result of your fertility test! You come across as one of those people we don't get very often in life who just look at the bright-side of life and have a funny way of making it contagious ;)

Good-Luck!!!

And to DestroyerofWords... Kindly Fuck Off.

http://www.reddit.com/r/IAmA/comments/1k6368/i_am_a_24_yo_female_and_going_through_menopause/cblzv3z

HI_SavvySavy1 karma

Thanks!!! I really appreciate it!