I know it’s been a long long while since I blogged.
A lot has happened since December 16.
– I got out of the hospital the next day.
– Beckham came home on New Year’s Eve.
– Found out I will have to have a stem cell transplant.
– I went in for my second round of chemo on Jan. 12.
– My sister was typed to find out if she is a match for the transplant.
– I got out of the hospital on January 16th.
– The next day, I attended a benefit softball tournament in my honor.
– And then had to go to the doctor for repeated labs to check blood work over the past few weeks.
– Found out my sister is a complete mismatch, so they are searching for donors on the registry.
– And had a few doctor appointments for Bex too.
Needless to say, I could write a book on all that’s happened between now and then.
It’s difficult for me to figure out where to start or what exactly everyone would be interested to hear.
I feel like life has been so busy and chaotic lately.
I don’t remember what life was like before I had cancer.
Most of my days are spent going to the hospital and having doctor visits, getting poked in my arm to find out if I need to get platelets or blood. It’s literally consumed my life.
And let’s just say that everything at a hospital takes hours. My appointment may be at 9:30 am, but after getting blood or platelets I may not leave until 5 or 6 at night. It’s exhausting. And I’ve literally been having to go two to three times a week.
This week though, I’ve gotten a break. I went Monday and my counts are starting to recover from my second round of chemo and they were looking good enough that I will go back next Monday. It’s like a mini vacay from the hospital. Whoop whoop.
When I’m not at the hospital, I’ve been at home taking care of my boys. I spend my days changing diapers, feeding and washing bottles, doing laundry and playing with Brody and Bex.
When my counts started to drop about Jan. 19-20, I started to feel more tired and run down. No nausea or vomiting, but I got another cold or sinus infection or something. I’m still battling that but I feel better.
I am very anemic so every time I get up to go to the bathroom or pick up stuff or vaccuum, I get really tired and I’ve even gotten lightheaded. Luckily, I’ve had a couple of friends help me out a day or two during the day while Klay’s working.
My awesome friend Lauren has went to every doctor appointment with me the last three weeks, so Klay could go to work and school. She has literally been over to keep me company on days I’m by myself, helped me take care of the kids and just sat with me at the doctor for hours and hours. She’s truly the best!! Thank you Lauren! I love you!
And at night, Klay has made me sleep in when Beckham would wake up, so I could rest.
My 2nd Round of Chemo
I made it through my second round of chemo this January. I spent 4 and a half days in the hospital, receiving Cytarabine and Idarubicin again. I did have some stomach issues the first day, but after that I was OK. I began my Nexavar–the oral chemo pills–and I continue to take those for 28 days. I did get a rash on my neck, face and legs this time around. It didn’t itch; it just looked bad.
This round I did my treatment at another hospital–Medical City Dallas. The room was bigger and had wallpaper, but was looked like a 1990s nursing home. I suppose that’s better than the plain white walls that surrounded me at Presby. You’d think they’d make the oncology floor have nicer and have more uplifting rooms. Someone needs to call Nate Berkus, stat!
Unfortunately the nurses had a really, really difficult time accessing my port. For those of you who don’t know what that means, I have a port in my chest where they “stab” me with needles and leave it in (like an IV) where they can give me the chemo, draw blood and give me other medications, which keeps them from having to poke me in the arm several times. But the thing is, depending on who does it, it hurts like hell when they push that needle in my chest. And I have two ports, which means I can have them both accessed at the same time (it basically doubles the stabbing, if they want to access both).
Needless to say, it took them 14 times before they got in one port–14. It hurt and was uncomfortable, but I wanted them to get it done so I could start chemo and get out of there ASAP later in the week. Fourteen times is pretty much unheard of… it was crazy and I had quite a few pokes in my chest from their attempts. At Presby, it took about 5 or 6 times at the most, but just about every time people tried to reaccess my port, they had difficulty.
However, since I’ve been discharged, I’ve had to go get blood and platelets in the outpatient infusion room several times. The nurses accessed my port on several occasions and got it the first try. Though, now, I give them a little guidance on where to go which helps.
Besides that, I really liked most my nurses. They were amazing, which made my experience much more enjoyable. They were super sweet and I just loved having their support. There was one nurse that I really connected with. She was my fave. I feel like I found another soul sister.
Stem Cell Transplant
It’s going to happen; I’m going to have a stem cell transplant.
What the hell does that mean exactly? Ehh, I’m still learning. But I’ll try to explain the best to my understanding.
AML is a blood cancer. Bone marrow generates and spits out my red and white blood cells and platelets. I will have another round of chemo when I’m admitted for the transplant to wipe out my immune system. Once my counts are bottomed out and I have no immune system, they will infuse the donor’s stem cells through my port and I will essentially generate their immune system, which is healthy and not producing leukemia cells.
I will be in the hospital for at least three weeks, which blows.
I will be super prone to getting infections so it’s important they monitor me. Normally, they don’t allow children on the transplant floor since many of their patients are neutropenic. They did say, however, that they would likely make an exception for me, as long as none of my kids are sick.
That took some stress off of me. I mean I couldn’t imagine not seeing my kids for three weeks, especially Bex. He’s going to change so much in three weeks and those three weeks I’ll never get back. At least with Brody I could Facetime or something and talk to him and he can talk back. But it’d be just as tough going without seeing and spending time with him too cause he knows mommy is gone and in the hospital. I’m not sure how he’s going to handle that a second time. That’s a long time for a toddler. Hell, it’s a long time for me. I’m dreading it. I hate being away from them. I hate being connected to a pump I have to wheel around like a ball and chain. I hate being away from the dogs, away from my bed, my shower, my home. All of it sucks. I hate chemo. I hate the hospital.
But I know I have to do this to get better.
Unfortunately, as far as the donor goes, we were hoping my sister would be a match. It’s most likely that siblings will be a match because we are made up of the same genes. But she was a complete mismatch. She was extremely upset. I was OK. But I can’t imagine how she feels. I’d feel horrible if she were in my shoes and I got that news too. I know she wanted to help me and she felt like that was her chance to really help. But it’s not her fault she’s not a match. I don’t want her to think that it is either.
On the bright side though, the docs seem to think I’ll find a match pretty easy. The preliminary results look “great,” they said. And that’s all I can hope for I suppose.
Having a transplant is necessary in my case. I have resilient mutation called the FLT 3 and it’s a bitch. It just comes back and comes back which means that without a transplant my chances for longterm remission are slim with just chemo. So, a transplant about triples my chances for longterm remission.
The recovery time for a stem cell transplant… is six months to a year or more.
I think that means my immune system will pretty much suck for a long time and I’ll be tired and prone to getting infections. Getting an infection can land me in the hospital, so we don’t want that. There is something also called GVHD that I could get. Just look it up. It’s kinda hard for me to explain.
Pretty much the stem cell transplant is overwhelming at this point. When it gets closer, we will take a class on it to learn more.
They are thinking it will be March or early April. Until then, I don’t want to think too much about it and the recovery time. It’s overwhelming.
Until next time,