Archive for October, 2014

Halloween Platelet Infusion

More platelets scheduled, plus a blood draw for a CBC. I got 1 unit of platelets. The ones that were due in today won’t due in until Saturday.

My friend’s wife brought their little boys over, who are 13 and 2 months old. They were dressed up as Batman & Superman, so cute! I passed out on the loveseat, and managed to stay in a coma while my husband gave out candy to a few kids. I’m bummed, but I was exhausted, and now I have some good candy to munch on :)

My platelets were at 6 after getting my platelets Tuesday and today. It’s not much, but it’s better than 0. A CBC was scheduled for today, but the lab only checked my platelets.

 

                            ___====-_  _-====___
                      _--^^^#####//      \\#####^^^--_
                   _-^##########// (    ) \\##########^-_
                  -############//  |\^^/|  \\############-
                _/############//   (@::@)   \\############\_
               /#############((     \\//     ))#############\
              -###############\\    (oo)    //###############-
             -#################\\  / VV \  //#################-
            -###################\\/      \//###################-
           _#/|##########/\######(   /\   )######/\##########|\#_
           |/ |#/\#/\#/\/  \#/\##\  |  |  /##/\#/  \/\#/\#/\#| \|
           `  |/  V  V  `   V  \#\| |  | |/#/  V   '  V  V  \|  '
              `   `  `      `   / | |  | | \   '      '  '   '
                               (  | |  | |  )
                              __\ | |  | | /__
                             (vvv(VVV)(VVV)vvv)

Platelet infusion (failed)

Yesterday’s donor couldn’t make it in, so we rescheduled for today. They ended up not getting there until late, so we set it up for Friday instead. It never ceases to amaze me how insane things get with these infusions. This time is different because of the donor not being able to make it one day, but the nurse in the Cancer Center who scheduled them did not set anything up to happen until late afternoon. The nurses in the hospital who actually give the infusions need them there as early in the day as possible. That way if they’re late, they can still give them to me the same day they were scheduled for. It’s not easy changing all that crap in their system either, and it costs me a lot more time. The Cancer Center thought they were doing me a favor “because I am not a morning person”, but I am on a night schedule, going to sleep in the morning when I get to the hospital – this is my chemo schedule, because it has to be started first thing in the morning. What a freaking mess…

Platelet Infusion (failed) / another broken tooth

1 unit of platelets is expected to be at the hospital for me this afternoon. One of the oncology nurses is supposed to call me when they come in. With 6 platelets, I’m pleasantly surprised that I can still brush my teeth without my gums bleeding, and I have no mouth sores. I’ve been extremely careful to only eat soft foods. They wouldn’t let me out of bed with less than 10 when I was in the hospital, being at such a high risk of bleeding. I need a bubble wrap hazmat suit…

Although it sucks having to go in 3 to 4 times a week to keep my platelets above 0, it gives me a warm fuzzy feeling. I need to have specific platelets (more drama), therefore the blood bank calls out to a very select handful of people across the country to donate…just for me. That’s pretty awesome!

Edit: My donor was unable to make it to make it. I was told that the infusion was rescheduled for tomorrow, so I adjusted some plans that I had made, and prepared to be at the hospital for a few hours Thursday instead.

My bottom right back molar broke today. Same tooth that I had pulled on the other side, thanks to chemo. I wanted to get this tooth taken care of back in July when I had the other one pulled, but the doctors insisted that we had to start chemo right away, and we didn’t have time to take care of this tooth (I’ve been in remission since January!). Now I no longer have my COBRA dental insurance, and can’t afford to have it taken care of. Even if I could, my platelets haven’t been high enough since July. This last time, I refused chemo while I had a sinus infection. It amazes me that the doctors are willing to wipe out someone’s white blood cell count while they have an active infection. No wonder my nurses say that most AML patients die from infections…

Another long day of red tape

Saturday, Sunday & Monday I felt like total crap. My digestive system was trashed…hiccups, gas, extreme bloating. I was hungry but everything little thing I ate felt like it was going to make me burst. The steroids (I’d imagine) made my entire body swell up. I had to stay off my feet, and all my joints were swollen and sore. My skin started breaking out. The sides of my head (my hair is now shaved into a mohawk, couldn’t deal with a full head of curlies), ribs, chest, stomach, back, tops of my arms, and my bikini line, have sexy red bumps on them,  a lot of which have turned into open sores. I also had very painful bone pain…every time something touched by body, it felt like I had a really bad bruise in that spot. On top of all this, I got my period on Saturday – for the first time in a year…so now I had cramps and very sore breasts on top of everything else. Just my luck. I missed my Monday appointment with the doctor. Apparently I needed sleep much more.

Today’s expected fun: Blood draw, then doctor appointment. CBC results:

white cells: 0.6

hemoglobin: 10.8

platelets: 6,000 (6)

Rant: Last week, the doctor scheduled platelet infusions for Monday, Wednesday, and Friday of this week. He neglected to mention this to me until today, during my weekly appointment. Therefore, instead of having an appointment and getting a shot to bring my counts up faster (Neulasta) – which normally takes 2 to 3 hours – I also had a 4+ hour infusion that expired at midnight, and they wanted me to go up to the oncology floor to have it started right away. The doctor didn’t tell me the platelet schedule because he “wanted to wait for my blood work to see how low they are before infusing”. My platelets were at 24 last week, were dropping, and they typically infuse when they drop below 20. Chemo wipes out what’s left. Why wait to tell me the infusion schedule?! Of course I didn’t bring all my stuff…food, drinks, things to work on while I’m there. I can’t seem to get my doctors and nurses in the Cancer Center to understand the preparation it takes for me to spend that many hours at the hospital. We also have 2 cats at home which require medications every 12 hours. I was told the rash was most likely a drug reaction, most likely the steroid I got with chemo last week. With my white cell count already crashing toward 0, I get to start all my preventative pills, antibiotics, etc. I get to wear a mask and gloves everywhere, be a total germophobe, and be deathly afraid of cat litter and the fur babies.

Gene mutation testing status:

The doctor gave me the results of the CKIT test they ran a few weeks ago. The material that was submitted for the test only allowed them to test for 1 of 2 items (exon 8 & 17), and the item they were (exon 8) able to test for was not present. A little good news. The doctor didn’t know the date of the material they used, so he is checking on that, and testing for exon 17. If there is presence of the CKIT mutation, UNMC will automatically want to do a transplant. It puts me into an intermediate risk category. Because I have refractory/stubborn AML, I may be considered with or without the mutation.

I still have no information on testing for FLT3/ITD. I asked this doctor to run it last Monday, and had blood drawn that evening for it. I had to explain to him a few times that the test must be done on old material. He is still checking into this. UNMC is not concerned with this mutation because it typically has a poor or unclear prognosis regardless of transplant. When requesting this test be done at my regular doctor, I was told that it wasn’t necessary because it had no bearing on treatment. It opens clinical trials, and almost guarantees that I’ll relapse…I had to demand this test be done, even though it’s now considered a “standard of treatment”, and should be done at initial diagnosis & first sign of relapse.

Anyway…I had plans for coffee after my appointment with my mother-in-law’s boyfriend, and I wasn’t breaking them. Thankfully my nurse allowed me to check in, then visit with him for a couple hours before coming back for platelets.

Chemo – round 7

Chemo Schedule:

Monday 10/20: am & pm dose

Wednesday 10/22: am & pm dose

Friday 10/24: am & pm dose

 

My nurse busted her ass to get me out of the hospital 12 hours after I went in for my chemo. I bought a new outfit almost a year ago (while I was inpatient), and this was possibly the only night I would have a chance to wear it out. After my chemo was done, I went straight to the club to meet up with some friends i hadn’t talked to in years. It was a good way to celebrate what will hopefully be the last of my chemo…although I have a feeling that a transplant will be recommended in the near future, introducing me to a new level of hell.

Chemo – round 7

Chemo Schedule:

Monday 10/20: am & pm dose

Wednesday 10/22: am & pm dose

Friday 10/24: am & pm dose

 

I spent another 17 hours at Immanuel Medical Center. Another long day. My digestive system is starting to feel the effects, with a lot of bloating, variable appetite, and that odd floaty feeling in my stomach. Chemo also dehydrates, which means constipation on top of all the other pleasantries.

Chemo – round 7

Chemo Schedule:

Monday 10/20: am & pm dose

Wednesday 10/22: am & pm dose

Friday 10/24: am & pm dose

 

I spent 17 hours at Immanuel Medical Center. Each dose of chemo only runs for about 3 hours. The 2nd dose must begin 8 hours after the first dose begins. Medication must be given before each dose (steroids, anti-nausea) to minimize risk of reactions. It’s amazing how inefficient this process is, and unnecessarily time-consuming for the patient.

My platelets were only at 24 when starting this round of chemo. I had to ask the doctor to arrange for platelet transfusions for next week. The last time this particular doctor got platelets in for me, I was not notified, and ended up spending an unscheduled 9 hours at the hospital the day the blood products expired. This was highly upsetting, as I told my doctors that was the one day that week I could not make it in. My mother and nephew arrived from 1,000 miles away that day, and I hadn’t seen them since shortly after being diagnosed (9 months). In turn, I was told that each of the 3 days I come to the hospital for blood draws per week that I should “just plan to stay for transfusions”. I spend a minimum of 5 hours per unit of transfusion at the hospital, usually with no food available. I may be crazy, but I think that is A LOT to ask of someone to prepare for, not even knowing if they will need to stay for an extended period…especially when you have the opportunity to give days of advance notice. I am not looking forward to all of the transfusions that come along with recuperating from chemo, or the arguments that I need to have with my doctor during my Monday appointment.