Archive for November, 2014


Will update with details.


White blood cells: 1.9

Hemoglobin: 9.0

Platelets: 37

Absolute Neutrophil Count (ANC): 1.2

I learned today that the Cancer Center I visit at the hospital will be closed on Friday. “There will be no doctor to read the results”. Therefore, we decided to skip Friday’s scheduled CBC, and come in on Monday 12/1 for that & my weekly doctor appointment.

I received a letter yesterday that my Medicaid insurance had been activated for November. This is the first time since April 1 that my Medicaid insurance was activated during the current month…which means I can get prescriptions for the first time since April 1 without paying full price for them. I left the hospital with a script for Xanax (my first one, have just been too overwhelmed & stressed), and a 90 day supply of Protonix for my acid reflux & unhappy stomach.

I also received confirmation that the material gathered during my first Bone Marrow Biopsy was stored in a way that does not allow it to be tested for gene mutations. Therefore, I will not know my true prognosis unless I relapse. This would allow new material to be collected for testing. It’s very discouraging that my current doctors want nothing to do with gene mutation testing, and that material is not stored properly to allow for it. For something that is considered to be a “Standard of care” these days, they are far behind the times.





My husband and I are completely overwhelmed. We have projects that have been put on hold for the last year and 1/2, and a full time job managing my stupid illness, with all its paperwork, phone calls, scanning, emailing, copying, printing, mailing, appointments, and trying to keep up with the house (and him working).

I’ve created a “community” at Lotsa Helping Hands. Tonight, I added a Pre-Transplant To-Do list, which volunteers can sign up to help us with. We have a lot of people asking how they can help, but it’s been tough to coordinate anything. I also have a cousin and step-sister back home in PA (thanks girls!!!) who are helping put together some fund raisers for those who want to contribute financially. We’re already about $25,000 in debt for medical expenses (long story, need to create an insurance section for those interested in that tangled web of misfortune), and will need financial assistance to get to the point where we can even schedule transplant.

I could really use someone to simply sit with me and help me organize things like paperwork, lists, etc. My brain is very fuzzy and overwhelmed right now (which is why I haven’t updated my blog in a couple weeks), and I will probably not be able to manage any of these things during and after transplant. I’m trying to set it up so that it all gets taken care of for me.

More paperwork…

I was going to turn in financial aid forms & paperwork to UNMC on Monday, but I think I will wait until today to do that. UNMC is also going to assist me with choosing a new insurance through the marketplace. Apparently, the marketplace only gives you the cost of generic medications until you sign up for a plan. I need all drug cost information before I choose a plan. It will be a long painful visit! There is also a specific person at UNMC who handles medication assistance. I need to call her and get that process started. Also need to create a page to explain my insurance and medication dilemma. It’s become ridiculously complicated.

Dr Appt / CBC

CBC Results:

White blood cells: 1.9 (low)

Hemoglobin: 8.5 (low)

Platelets: 31 (low)

ANC (Absolute Neutrophil Count): 1.3

I complained heavily about the gene mutation tests that need done. The doctor that I saw last Monday just called the lab on Friday to see if the one test can be run. I was not even seen by a doctor, so the assistant that I saw and my nurse navigator said that they will follow up on those. I let them know when I will be traveling to PA. They will provide me with orders for blood work while I’m away. I’ll need 1 or 2 CBC’s done in PA.

I also found out what my hemoglobin was last Friday – 8.2. There are notes in my chart to transfuse at 8.5 or lower if I have symptoms (headaches, fatigue, short of breath), which I had all week, and continually got worse as the week progressed. I let a nurse know that I had symptoms, and felt horrible. The doctor said that he would call me if there was any concern of my CBC results, which he did not. This same doctor also blew me off a few months ago in a similar situation. It was alarming, yet expected, that I did not get a call. Luckily I am feeling slightly better, and I didn’t want to stay there any longer than the hour & 1/2 today’s “short” visit took up.

At least my platelets are increasing on their own. I’ll take an increase of 2! They should be at 50+ for dental work to be done, which can’t be done until January, prior to transplant.

Platelet Infusion / CBC

CBC Results:

White blood cells: 1.9

Hemoglobin: 8.3

Platelets: 29


I did not get a platelet infusion, only a CBC. It took 2 hours, and I did not have my results by the time I left. The order was put in incorrectly to only get a platelet count, which only happens after I get a platelet infusion. I get 3 CBC’s every week, and this is the first time someone put the order in this way. Someone wasn’t paying attention. Because it was late in the day (4:30), I was told that there would be no one to give me the results, but that the doctor would call me if there was any concern. I desperately needed a blood transfusion, but no one called…not surprised. In fact, I’m surprised that the following Monday, they had the results printed for me. Check out my Dr appt post from 11/24 for some more ranting on the subject.

Platelet Infusion / CBC

CBC Results:

White blood cells: 3.4

Hemoglobin: 8.8

Platelets: 23


This is the first day that a CBC was done and I did not need any platelets. Finally!

Platelet Infusion / Dr Appt / CBC

White blood cells: 1.9

Hemoglobin: 9.2

Platelets: 20 (26 after platelet infusion)

Absolute Neutrophil Count (ANC): 1.2

Although I was not forced to stay for a platelet infusion on Friday with my platelets at 17, I was told that I had to get one today because the stupidly expensive platelets they had for me today expired at midnight & they hate to waste them (which I understand). However, I checked the expiration date on the platelets I received, and they did not expire until Wednesday. I really hate it when they flat out lie to me. I didn’t bring any food or drinks with me, or the clothes that I change into to lay in bed for hours. Thankfully I was able to change out of my bulky winter pants into a pair of hospital pants.

I was told that unless my platelet count dropped again, this would be my last platelet infusion. They cancelled Wednesday & Friday’s platelets. Things are looking up…at least as far as my platelets are concerned. It’s nice to be able to brush my teeth normally without spitting blood for hours, and flossing is such an amazing thing!

Check Marketplace Insurance

Apply for government subsidy on 2015 insurance.

Platelet Infusion / CBC

White blood cells: 4.0

Hemoglobin: 9.1

Platelets: 17

I was told that I did not have to stay for a platelet infusion. My platelet count was going up (slowly) on its own. I did not feel like spending more hours at the hospital, and didn’t have any bleeding issues, so I did not stay for an infusion.

Prior to going to the hospital, daily driver car wouldn’t start. My guess is a dead battery, even though it was just riven 2 days prior. My husband was working, so I couldn’t use his car. I had to take my “garage queen” to the hospital, which has bad tires & barely any front brakes. The car is fun to drive, but it’s a pain to drive a 6 speed when you’re not feeling well & has to be driven tenderly because of the tires & brakes.

I purchased a new IAC (Idle Air Controller) for my daily driver. A bad one causes the car to stall any time it’s at idle…not fun. My husband put that in for me, then all the locks seized up, so he couldn’t pull the battery. We assumed the locks were frozen (it was very cold), but they had to be oiled before he could get into the car to pop the hood. A test at Advance Auto confirmed that the battery was no good. This is the second battery I’ve had go bad in 3 months. Both were old batteries, but still…now the garage queen has no battery (put that in the daily driver), and who knows when we’ll be able to afford one. The amusing thing is that it’s been recommended that we let my husband’s car get repossessed, as it’s an extra expense we don’t really need.