Archive for the ‘ Transfusions/Infusions ’ Category

Friday’s numbers, Saturday’s breathing

The percentage of leukemic cells in Friday’s blood sample was 88%, up from Wednesday’s 77%. I also got a platelet transfusion.

Saturday was probably the most difficult day I’ve had where my breathing is concerned. I could barely move, and laying down was almost impossible.

Today the breathing is better, and I was able to do some very light tidying around the house.

The bloating/swelling is still pretty bad, mostly in my hands, feet, legs & abdomen. I now have 2 pair of shoes/boots that I can wear. They are a full size larger than what I normally wear, and are still a bit uncomfortable with all the foot swelling.

Going forward, I have labs Monday, Wednesday & Friday scheduled, and a few other appointments. Hopefully that magic number decreases.

Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
Friday 4/13: 88%

More tests and bloodwork

Short version: I’ve felt pretty horrible the last couple days, and have been sleeping a lot. I got some blood yesterday, which helped a little. The amount of cancer in my blood has decreased slightly, which is good. We’re just watching & waiting until we can do the next round of chemo.

Long version: I had bloodwork Tuesday & Wednesday. When I woke up Wednesday morning, I knew my hemoglobin was low because I could barely breathe, and had no energy. It was difficult to even hold my head up. My counts continue to go down, so I am getting transfusions. I got blood yesterday, and most likely I will need platelets tomorrow. Here are the numbers for the amount of cancer in my blood:
Friday 4/6: 81%
Sunday 4/8: 82%
Monday 4/9: 82%
Tuesday 4/10: 79%
Wed 4/11: 77%
I go in again tomorrow for more bloodwork. It’s been difficult to get all my pills in because I am sleeping so much, but we are trying our best. Tuesday I had 4 appointments, which was very exhausting. Here’s an update on those:

Infectious Disease says that I have a staff infection in my lower legs, mostly due to the massive swelling allowing bacteria under my skin. They feel that 3 antibiotics is sufficient, one of which targets this type of infection.

Walking test: My oxygen level during my walking test was 99 to 100%. I became so short of breath at one point that i was gasping for air & had to sit down. The insurance company won’t approve oxygen with this high level of blood oxygen, and I’m told that even if I did get oxygen, it wouldn’t do anything because there aren’t enough red blood cells that aren’t already saturated. There is nowhere for the oxygen to go. This is very frustrating, because I am obviously having trouble breathing but there is nothing that can be done beyond what we are already doing (pills, inhalers).

Therapist: It was so nice to see my therapist. I hadn’t seen her since my cancer came back. I will continue seeing her once a week while things are rough, and she has some great ideas for things that we can work on that will cut down my stress.

I already mentioned the bloodwork results above. Hopefully tomorrow’s bloodwork shows good things, and hopefully I feel well enough to post an update about it.

The storm is here, and getting worse

Short version: I began to feel terrible Monday April 2. I’ve had small spurts of good times, but I probably haven’t had a full good day since then. I’m very fatigued and retaining a lot of fluid, therefore I can barely stand or wear shoes. I still can’t wear pants because I’m so swollen in the torso. My breathing has also been worse and I barely have an appetite. There is consistently more cancer in my blood as time goes on. I will have more news after tomorrow’s appointment with my cancer doctor.

Long version: The percentage of cancerous cells in my blood has gone from 16% (when they first found it March 1st) to 82% (today). I think we need a harsher chemo drug, which was needed to get me into remission the first time around. I So far, I’ve had 1 round of chemo (3/21 to 3/25), and I began a chemo pill this past Friday (April 6th). I have only needed a blood and platelet transfusion once, which is good. My white cell count is still high, which is bad. I meet with my cancer doctor tomorrow to discuss the gene mutation results (which she wants to discuss in person…uh oh), and to talk about what comes next. We don’t want to end up killing me before we kill the chemo. Since last Wednesday my swollen legs have been red for about 3″ near the ankles, and the tops of my feet. I’ve seen 4 doctors who all say they have not seen this exact thing before. i can’t tell you how many times I heard that, and 99% of the time it’s something bad. The redness has remained the same over these last few days. My legs and feet are very painful. My hands and wrists are very painful and swollen. I am swollen all over & can barely move. I’m starting to feel claustrophobic in my body, it’s quite horrible. I’m also feeling very panicked that I don’t really have anything planned for my death. Some notes here and there, a death notification form on the blog, some contacts in my phone. I feel more panicked the more those bad numbers go up. Things are getting pretty scary.

On a more positive note, I can’t thank everyone enough for all the well wishes, hugs (virtual ones too!), the stuff, and just everything. I truly feel loved and special!

Also, I am afraid that I will not get the glyph of my Warframe idol (*cough* Tavier) before I die…videogame reference. The person who I will my account to must be sure to earn it if I don’t :)

Calm before the storm

Short version: Yesterday was my last day of chemo (for now). For the next 2 weeks, I go to the hospital for blood work and/or transfusions every Monday, Wednesday and Friday. Most likely we will not have any updates on the disease for a couple weeks.

Round 1 of chemo (day 5 of 5) finished yesterday. I feel pretty good so far, the chemo doesn’t normally affect how I feel. Over the next few days my white blood cell, hemoglobin and platelet counts will continue to fall. The blood work results will determine whether or not I have to stay for one or more transfusions. They can potentially be very long days.

I received my breathing machine on Friday. It’s very small and quiet, and I am enjoying it a lot. It includes a humidifier. The chemo dries the body out something horrible.

Going forward, I will have blood drawn every Monday, Wednesday and Friday. The results of the blood work will determine if I will need to stay for blood products that day. I could receive multiple transfusions, which can not be run at the same time. Low hemoglobin will give me fatigue, headaches and take my breath away. Low platelets will give me headaches, lack of clotting, mouth sores, mouth and nose bleeding, and could kill me if I fall (internal bleeding).

How can you help? Things are very overwhelming as I am trying to catch up with friends and family and prepare for whatever happens next.

I now have a form to the right side of the blog titled “Death Notification”. If you want to be notified upon my death, please fill it out. Hopefully this is not for many years to come (of course) :)

You can subscribe to the blog to get updates via email. There is a form to your right if you’d like to subscribe.

I now have an Amazon wish list. There is a button for it at the top of the blog.

We can always use help with the yard. Fall’s leaves have yet to be raked.

We can always use food, especially prepared food. I can’t prepare meals anymore and my husband is being pulled in too many directions.

If you have any recommendations on things that you think would help us out, I am all ears.

Thanks again for everything :)

Bone Marrow Biopsy #7 / CBC / Platelets

White blood cells: 0.8

Hemoglobin: 7.0

Platelets: 27

ANC (Absolute Neutrophil Count): Not checked if white blood cells are less than 1.0.

 

I received 1 unit of platelets.

 

Now for the good news…I went from having 35% bad cells to 2.5%. I am clear for transplant with anything less than 5%. This was the best news we had in a long time, I am back in remission after 1 round of chemo :)

The plan is to do one more round of chemo (same drugs I had for round 3, I did just fine with them!), another biopsy afterward, and transplant within one month of that biopsy (if the results are good). Prior to getting this next round of chemo, we really want my counts to come up more so I can get this dental work done. We’re looking at probably mid-May for transplant. More waiting…

CBC / Platelets

White Blood Cells:  0.8

Hemoglobin:  7.1

Platelets:  7

Absolute Neutrophil Count (ANC):  Not checked if white blood cells are less than 1.0.

 

I received 1 unit of platelets.

Blood / CBC / Platelets

White blood cells:  0.7

Hemoglobin:  6.4

Platelets:  6

Absolute Neutrophil Count (ANC): 0.3

 

Received 1 unit of platelets and 1 unit of blood.

Platelets

I received 1 unit of platelets.

CBC / Platelets

White blood cells:  0.5

Hemoglobin:  7.1

Platelets:  9

Absolute Neutrophil Count (ANC):  Not checked if white blood cells are less than 1.0.

 

I received 1 unit of platelets.

I got my biopsy date today…the next biopsy will be done on March 4.

CBC / Platelets

CBC:

White blood cells: 0.2

Hemoglobin: 7.3

Platelets: 2

Absolute Neutrophil Count (ANC): Not checked if white blood cells are less than 1.0.

 

I received 1 unit of platelets.

I vomitted, which I am phobic about. I have not done so through most of my treatment, but this last round of chemo is kicking my ass. Yes, I am now charting when I vomit. What a life, huh?