Diabetes insipidus is a rare hormonal condition that causes one to pee a lot and feel thirst to the point of hydration. Diabetes insipidus is not related to diabetes, but one of the symptoms of diabetes is excessive thirst and urination.
When I was sick prior to my AML diagnosis I suffered from extreme thirst. I was drinking constantly and peeing all the time. It was like I couldn’t get enough.
In the ER they were blown away by how much water I was consuming.
After arriving at the James, they did an MRI and found a cyst in my brain which they thought could be causing me to drink so much.
The doctor said sometimes AML can be the cause but it’s rare. He actually wasn’t sure if it was the AML or the cyst.
When they tested my urine they said it wasn’t urine it was water. I was drinking so much it was going right through and not flushing toxins out of my body. He explained, that my brain wasn’t producing the hormone to tell my kidneys to only release some of the fluids for the rest of the body. Instead, it was dumping everything. They worried my salt level would go up which could cause my brain to swell. They started me on Desmopressin right a way to stop the thirst and the peeing. It worked!
The last time they did an MRI the cyst was gone. He wants to wean me off the medicine but I’ve had so many issues with GVHD of the gut he decided to give the doctors time to get that under control before adding any issues.
I see the doctor in a few weeks and at that time I feel he will start that process now that the other issues are in check. Hopefully, we can start removing medications so my body can heal.
Thank you for following along with my journey.
You would be surprised how many people ask if they can color their hair, acrylic nails, or tattoos. I would advise you to talk to your team of doctors before you do anything major.
Did or are you planning on doing this after chemo or your transplant?
I waited till after my hair was about an inch long before coloring my very salt and pepper hair. My girls would ask me when I was going to do it. Actually, my boyfriend did too. So I colored my hair a light brown almost blonde to start out since it was the first time. I didn’t want it to be too dark even tho my hair is dark brown/black.
After about two months I recolored my hair dark brown which everyone thought was my real color which made me feel good about coloring it again. My team didn’t have a problem with the hair color one bit. Yeah!
I’ve always put on my own acrylic nails and I’ve done it once since this journey began. Again, I would check with your doctor. I only wore my nails for a few days for the Relay for life. I did a poor job putting them on because of my eyes were blurry. It’s really difficult to put on nails when you can’t see.
I was determined to have orange, green, and pink tips. For a long time, I’ve been a fan of the french manicure look. I wanted orange for leukemia, green for my daughter who went through chemo for brain tumors from Neurofibromatosis, and pink for my friend who had breast cancer a few years ago. They were cute but not the greatest shape so I removed them afterward. Oh well, it was the thought that counts right?
When it comes to acrylic nails you have to keep in mind they can make it harder to get a correct oxygen reading. Also, sometimes they will tell you to remove them for surgery. So those super cute nails might not be a good thing or may have to be removed. For me, it’s really not that big of a deal because I do my own so it doesn’t mean I have to make a sudden trip to the salon which can be a real bummer if you’ve only had your nails for a couple of weeks.
Tattoos, hmm, that one is kind of scary for me. Not because I’m scared to get one I have three tattoos. But, injecting the dye kind of worries me the most. I currently have GVHD issues with the skin on my face so the risk of injecting something into the skin I would imagine could cause a reaction. I would definitely run this by the doctor before you make plans.
I would like to get a leukemia tattoo. I currently have two tattoos for awareness. The one tattoo was for a fundraiser and I got a semicolon tattoo shaped like a cat which brings awareness to suicide. The other tattoo is a large green ribbon for my daughter’s Neurofibromatosis. So by rights, I should get one for myself, right? I actually have a few I would like not that I want a bunch of them but we’ll see. They are painful depending on the location but I’ve been through things a lot worse than a tattoo. I’m a tough cookie, sometimes, depending on where the pain is I guess.
To be honest, consult your doctor before trying anything during or after chemo and transplant.
I wish you all the luck!
During the transplant recovery process, I developed a few issues along the way. One issue I had during this process was blood clots. Some people are more likely to have the issue than others and I happen to be one of them. It seemed like every time I would take two steps forward I would take six back.
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Over a course of a couple of days, I started not to feel well. I was very winded and so weak feeling it started scaring me. I started having pains around the bottom right rib on my right side. It wasn’t long before I started having trouble inflating my lungs without pain. The pain even made it difficult to sit up or rollover. I felt so bad I told my boyfriend I wasn’t sure I was going to live through this.
A few hours later I went to the bathroom and became very lightheaded. I almost completely passed out just sitting on the toilet. My sister called 911 to transport me to the emergency room.
At the hospital, they evaluated me for dehydration and decided to keep me because my oxygen level was low and I was in pain. Over the course of the night, my oxygen level kept dropping pretty rapidly which worried my doctors. I was losing my ability to breathe on my own. They transferred me to ICU to monitor my oxygen.
They felt I had a blood clot in my lung but because of my kidney numbers when they took my bloodwork they didn’t want to put me through a cat scan with a dye that could cause even more issues with my kidneys. They decided to give me blood thinners and monitor my kidneys.
It wasn’t long afterward my breathing started to get better and my need for oxygen started to improve. When my oxygen need became less scary they moved me to the BMT floor of the hospital for the rest of my stay.
When my breathing was back in normal range they released me back to the hotel.
It was only a matter of a few days before I became lightheaded again but this time I actually passed out on the toilet. Again, my sister called 911.
Once back to the hospital they treated me for dehydration and other electro light issues. When they did my bloodwork this time my kidneys were in the normal range, so they scheduled the cat scan to take a look at my lungs.
The cat scan showed multiple blood clots in both lungs. So they were right just they were surprised I had more than one. Luckily, they were already treating me for the clots and it was just a matter of time for them to dissolve.
No wonder it was hard to breathe and I felt so bad. Blood clots are very dangerous in the lungs and I could have easily died. My physical therapist told me I was lucky I didn’t. I told her I’m here for a reason. For some reason, God wants me still on Earth. I wasn’t wrong when I told my boyfriend I wasn’t sure if I was going to make it or not. The pain and the difficulty breathing scared me to death.
Even tho it’s been months since I developed the clots I’m still on blood thinners to prevent additional clots to form. I’m currently on shots for this but hoping to change over to pill form soon. My poor stomach is covered in black and blue marks all over it. Plus shots aren’t the most pleasant things to have to give yourself.
Do you have issues with clots forming? I also have them in my lower legs which causes swelling in my legs. But that’s another story for a different day.
Drop me a comment below with your story!
As I lay in the hospital bed fighting for my life from cancer, I had a lot of time to think about things. What else do you have to do, right?
Image by Gerd Altmann
Because of Covid I spent most of my time in the hospital alone due to restrictions. It wasn’t easy at times but other times it was nice just to snooze without worrying who was in the room. I was only allowed two visitors a day which makes it hard to squeeze everyone in.
My girls didn’t visit because of my grandchildren the little germ carriers that they are. We kept it simple and video chatted every day which was nice but still not the same.
One of the hardest days was Easter. My family gathered at my parents’ house for our typical Easter meal. My girls, husbands, and my grandchildren were all present to celebrate. They had their chocolate bunnies and an amazing feast my mother prepared for them.
Before dinner, my grandchildren hunted Easter eggs like normal. I was able to watch a little bit of the celebration but I was so tired I just couldn’t stay awake.
Before taking a nap it hit me. Did I die?
I didn’t obviously. But, as I was trying to go to sleep I kept thinking this is what it’s like to be gone. Life goes on. Your family continues without you.
Don’t get me wrong, I know life goes on but it was just really weird watching everyone live without me. It was the weirdest feeling ever. I was watching everyone’s life from afar. It was more than just not being there it was like looking from the outside. It’s really hard to explain how I felt. I felt dead.
I can’t be the only one to feel that way. Maybe I am, I guess. You would be surprised what goes through my head. A little anxiety and depression don’t help matters much. You should try living in there.
Have you ever experienced this? Did you ever feel so disconnected you wondered if you were dead?
Drop me a comment. What do you think?
My donor who lives in Germany and I are a 12×12 match which is wonderful and crazy at the same time considering my own sister is only a half match. Our differences are mainly sex and blood type. I was born an O-positive female and he’s a male with A-positive blood.
Image by allinonemovie
After having the allo transplant, when they do the bone marrow biopsy it indicates I carry the chromosomes XY now instead of xx. If you remember back in school XY is male and XX is female. So now my blood shows I’m no longer female. Now that is just the blood and not the rest of me. It’s kind of creepy and amazing if you think about it. I’m a female but I have male DNA. It’s almost like an SYFI story. It’s sometimes hard to wrap my head around the idea. I have someone else’s DNA traveling through my veins.
It’s amazing what they can do these days.
Not only that, I was born with O-positive blood and now I’m A positive just like my donor. Again, it’s incredible what the world of science is capable of doing. Just think about what they will be able to do in the future.
I’ve told many people over the last year I’ve received so many blood transfusions my blood isn’t mine anyway. But, that’s the whole point of doing a stem cell transplant is to get rid of my bone marrow that is defective and replace it with someone else’s bone marrow that isn’t defective.
The changing of blood type is very common and usually doesn’t take as long to change as mine has. I have read others who said it happened about three to four months after transplant but with me, I’ve needed transfusion along the way which reinstates my blood type. I’ve actually gone without transfusions over the last few months allowing the blood type to finally make the switch.
I wonder if blood type matters when it comes to GVHD? Now that my blood type has changed will I have fewer GVHD issues? It sounds reasonable but I’m not sure. I will have to look into it sometime.
What do you think does it affect GVHD?
If you went through the stem cell transplant and your DNA/blood type changed drop me a comment below. I would love to hear your story. xxx to all
While going through the first round of chemo to kill cancer that was robbing me of my resources I had ongoing low-grade fevers. That’s something typical of AML. The team was having a hard time finding the source of the fever.
Every time I spiked a fever they would do a chest X-ray, take a blood culture from my pic line, and also out of my arm. Which really was a big deal for me. I’m a hard stick and they would have to poke me a few times to get blood. This happened around the clock about 4 times daily.
I think the blood draws were causing a lot of my stress and anxiety. I would cringe each time they would take my blood for the culture. All of the constant pokings were driving me crazy.
Over a course of a few days, I developed a horrible painful rash on my face. They felt it was a reaction to the chemo which makes a lot of sense considering they were pumping my body with poison. They asked for a consult from dermatology to make sure that is what it was so they could treat it.
The dermatologist took a few samples of the rash to find out what it was exactly. The results came back as a fungal infection that I picked up somewhere in the hospital. They then started me on medication to kill the fungal infection. It took a while to heal but it hasn’t been back and no more fevers.
It was kind of funny in a way they were looking everywhere for the source of my fevers and it was literally all over my face. Once they started treating fungal infections the fevers stopped. What a relief.
It was a hard thing to deal with. I felt like a freak which isn’t true but when you have all of the bumps all over your face it’s hard not to feel different or embarrassed.
I was very glad when the infection cleared.
Have you had any issues or infections of the face? I would love to hear your story.
Thank you for following along with my journey to health.
I have a love-hate relationship with Prednisone. OK, more hate than love. It can be so helpful and hurtful at the same time. It’s a good drug as long as you only need it for a short period of time but if you need it for more than a couple of weeks and can cause all kinds of issues.
Image by HeungSoon
What is Prednisone? It’s a steroid that treats many conditions like inflammation, eye issues, allergies, cancer, and skin issues just to name a few. It tells the body to calm down but I swear it told mine to freak out instead.
I’ve been on Prednisone not long after the transplant and I’m still currently on it. For at least a few months I was taking 240mg a day for GI issues which is extremely high. At those levels, it takes a huge toll on the body. The neurologist told me a lot of my issues like hand tremors were due to the Prednisone. He wasn’t able to fully diagnose me with anything till they get me off of it or at least lower my dosage. He said it would be hard to sort out medical issues being on that high of a dose.
I’m currently on 30mg a day for GVHD issues which they are slowly tapering me down from 60mg a day. They started me on a medicine for GVHD called Jakafii which seems to be working at this point.
As I said, Prednisone can be helpful to calm things down like GVHD issues. It’s a quick fix but it’s not something you want to stay on.
Prednisone affects the muscles of the legs. It depletes them making them super weak. When I was on the 240mg I had a hard time getting up off the couch, toilet, and chairs.
One night I accidentally fell on the floor and I wasn’t able to get up even with the help of my sister. My sister who was my caretaker had to call 911 for assistance because my legs and arms were too weak to help myself. They arrived and put me back on my feet. I was able to walk and hold myself up but I just couldn’t get up off the floor. Another night I couldn’t get off the couch so I slept there a few hours till I had to pee so bad I couldn’t take it. Again they had to come and get me to my feet. They were very understanding about the thing and told me to call anytime.
Another huge issue, Prednisone lowers imunity which is really a bad thing for stem cell transplant patents. When the immunity is dropped that opens the doors to infection and viruses. Right now I’m dealing with a spike in my CMV numbers. CMV normally becomes dormant at less then 50 but when the immunity isn’t able to keep it in check it wakes up. My CMV number jumped to 6900+ which is really high. They had to change one of my medicines to bring the CMV in control.
Here are a few of the side effects of Prednisone.
- weight gain
- swelling of the feet
- blurred vision
- shortness of breath
- muscle weakness
- headaches or dissiness
- sleep problems
- excess sweating
- moon face (swelling of the face)
- camel hump (hump behind the neck)
- healing slowly
This is the short list. As you see it can really cause a lot of issues with the body making it hard to determie if its the prednisone or other medications you’re taking.
I’ve experienced a lot of the side effects listed above while taking the high dose. At times I was wondering if I was actually overdosing.
I’m not totally anti-prednisone but it doesn’t seem to work to well with my body. Some people have better luck than I do.
Have you had any issues with Prednisone? Share your story in the comment area. I would love to your journey.
One of the biggest diagnosis and treatment plan indicators is the mutations that come with AML the most deadly leukemia. Some mutations are more of a problem than others. When I was diagnosed they told me had multiple mutations but they didn’t go into any details other than writing on my board AML FLT3.
In order to find out what mutations I had, I had to do a little digging into the bone marrow report to see what was also present in my bone marrow and blood. I had what they call FLT3-ITD, NPM1, and DMND3A.
What is it? It’s an aggressive hematologic malignancy with a generally poor prognosis with only a 10%-20% cure rate. It can be treated by intense chemo but it’s a very high risk of relapse. It also at any time can come back untreatable. My doctor called it a smart mutation which I think adaptable is a better description than smart.
Thirty percent of people with AML have the FLT3-ITD. That is a huge percentage of people with a poor prognosis.
About 5 years ago they approved a drug that helps put the breaks on the FLT3 mutation making it easier to keep the ones in remission to get to transplant. I was very blessed to be one of those people. I went into remission after the first three-week treatment process and I stayed there through the transplant process.
NPM1 is actually a gene and the most commonly affected gene in AML. The abnormalities or blood cancer which form on this gene are called cytogenetically or CN-AML. They can cause a loss or gain of function of leukemia.
DMND3A is recurrent in people with AML and yields a poor event free with poor servival when present with the FLT3 and NPM1. What information I can find it’s involved in the development of AML All of this information is hard to understand.
When I first researched the mutations and genes I was more worried about the FLT3 mutation than anything but none of the other stuff seems to be much better or yield a better prognosis.
I added a few links for you to look into and read more about the mutations and genes involved in my diagnosis and treatment.
If you would like to share your diagnosis with me I would be thrilled to communicate with you.
XXX to all.
Over the past few years, I attended the relay for family and friends. I would walk for them. But this year was different. I was walking for myself. It was an emotional event as my close family and friends gathered at the event to walk with me.
Randy and I were the first ones in our group to make it to the event. We walked the first lap together while we waited on the others to join us.
After everyone was there the opening ceremonies began. A wonderful man shared his cancer journey with us explaining how his treatment played out, ups and downs, and how he made it through the process. We’re all glad he is still with us fighting another day.
Our fantastic mayor gave a wonderful speech and highlighted a few upcoming things in our town. He has really uplifted our town in the few short years of being mayor. He is amazing and always involved in our town no matter how big or small an event is. Our little town has flourished and become something all of us should be proud of.
At the end of the opening ceremony, the survivors gathered to walk the survivor walk. It was very emotional for me because last year I was going through chemo treatment. But for this year’s event, I’m a survivor.
I started out towards the back because my legs were very tired but I was doing pretty good at keeping up and decided to walk a little faster to walk with a close friend of mine.
As I rounded the final corner where everyone else was waiting I was met by Randy who was so emotional and full of tears. He just couldn’t hold it back anymore. We embraced and I told him it was OK to cry we’ve been through so much over the last year. He was very overwhelmed as we stood right in the middle of everyone crying and hugging each other. It was very touching and filled my heart with love knowing he was there for me and loved me enough.
Not a dry eye in sight. I think everyone felt the same way we did.
Next up was the police dog training. My grandchildren loved that. They watched as the dog searched for drugs and attacked one of the police officer’s arms covered in the large glove. They’re so aggressive. I wouldn’t want to be up against him that’s for sure.
By then we finished a lap and talked with a few friends. While over at one of the booths we gathered for a picture of all of us before heading out. I had had enough. My legs were very tired after only making it a few laps but at least I was able to make it there this year. I’m hoping next year to make a lot more laps.
My kids and grandkids stuck around for a little while for hair extensions and games. I slipped my daughter some money and said to let them enjoy some games.
My parents, sister, Randy, and I headed to a nearby restaurant for dinner and to rehydrate before heading home. It was a wonderful time I just wish I could have held out a little longer but my numbers had dropped and the CMV virus was running ramped making me very tired and weak.
By the time Randy and I made it home I was exhausted. It was wonderful to attend but really took its toll on me.
I appreciate everyone that attended and joined me for a lap. XXX to all
That is a tough question that seems to be asked a lot in the Facebook group I belong to. Which isn’t always an easy answer or the right one for everyone. It’s complicated by the unknown results. Everyone has different results and side effects ranging from mild to severe.
I was diagnosed with AML on March 25, 2021. At that time the doctors dumped a lot of information that also included my chance of survival which was hard to hear and understand what was going on not only because it wasn’t good news but also the condition I was in.
The doctor informed me the only chance for a cure was a stem cell transplant and I was a good candidate because I’m a 48-year-old white female. A lot of people over the age of 60ish get this type of leukemia so a person just about 50 is helpful. Plus they said I would have lots of options for donors because of my race. But like everyone else, they looked at family first. My sister was only a half match so they turned to the donor list for a better match. They found a man in Germany that was 12 out of 12 matches. They said he was the next best thing to a twin. I found this very interesting because my own sister was only half.
My diagnosis of AML with the FLT3-ITD gene mutation was the reason they felt I needed to go for a transplant. The FLt3 mutation has a high relapse rate and not only that it can come back at any time untreatable leaving me with days to weeks to live before it takes over. That is a scary thought and something I struggled with. The very thought of high dose chemo to wipe out and kill off my bonemarrow the very thing that produces the cells bad or good to live scared me to death. We’re not just talking about killing cancer which I’ve already gone through at that point but knocking me down to the point of not being able to fight off anything. It was like a nightmare and a hard decision that kept me up at night.
An allo transplant comes with many possible complications. GVHD or Graft Vs Host Disease can be very mild to very severe. It wasn’t long after coming off the anti-rejection drugs that GVHD started to be an issue. I was having issues eating with little to no appetite or sick in my stomach which makes eating very difficult. I dropped a little weight and became malnourished for a little while because of my lack of appetite. Also, I had diarrhea too. It was to the point of going six to eight times a day. I also would have loose to watery stools which threatened my system with dehydration. I even started to notice whole pills in the toilet. One of my meds wasn’t even absorbing. The doctor said things were moving too fast through my system.
Then my face felt like leather and peeled like I had a major sunburn but that wasn’t the case. The weather was still a crisp 40 degrees outside. No outside fun for this girl. Some days my face would be bright red which for that time of year was very strange. My eyelids became very sore and red too. The dermatologist gave me some steroid cream to apply daily to my face to help clear up.
It wasn’t long before I awoke with my eyes matted with yellow gunk making it hard to see and sometimes painful to open my eyes. After trying an antibiotic the doctor said it wasn’t an infection like pink eye it was GVHD. I ended up receiving drops to help with the eyes which at first helped greatly but after a while, things started getting blurry. It was like the world was hazy and very hard to see. That’s what I’m still dealing with today.
After what I know today would I do it again? I guess I would have to say yes because I’m still here. I get to watch my grandchildren grow up for at least now. So it’s worth it to me. There is no guarantee I won’t relapse at this point leading to another transplant but it’s better than being dead. I know that sounds harsh but others with the same diagnosis couldn’t even make it to transplant. So I consider myself blessed by all means.
Everyone’s journey is different. There isn’t a one size fits all treatment for AML. A transplant might be the best option for me but it might not be for you. There are many factors that play into the treatment and that is something to be looked at by the doctors and patient.
If you’re about the start your transplant process or still undecided I wish you the best of luck. Feel free to contact me or just follow along with my journey. XXX to you all