Big changes: moving, treatment, everything

As usual, I am making this post much later than I wanted. I’ve had family & friends visiting a lot over the last few weeks, have been very sick, and have been inundated with appointments.

Treatment: I’ve gone through 3 rounds of IV chemo (5 days, 10 days, 5 days), and a few weeks of a chemo pill. I’ve had multiple injuries, infections, antibiotics, vomiting sessions…I’ll spare the rest of the fun details. The good news is that I appear to be cancer-free at the moment, though there are likely some “bad cells” hiding out somewhere. I begin a 4th round of 5-day IV chemo on the 18th. I’m also now on oxygen 24/7 after my lungs continued to get worse, partly due to more pneumonia.

After that week of IV chemo, we are moving back to my home town of Pittsburgh, PA! My husband and I are completely exhausted, and we just can’t do this anymore. We are slipping…missing meds, missing appointments, late to every appointment, and just completely unorganized and behind on everything. I have a small army of a family that can take many burdens away and allow us to focus on what is most important: healing our bodies and minds. Switching hospitals at this point in treatment with such a complicated history is a nightmare, but it will have to be worked out. Most likely, I will stay on some kind of regular IV chemo regimen to keep me in remission. I will continue to need treatment for the GVH (Graft vs Host) problems I have.

A huge thanks to my friends and family here in Omaha and in Pittsburgh. My family is trying to raise enough money to make this move happen. Once again, I ask that if you have the ability to make a donation, please do. There is a GoFundMe link at the top of each blog page. I have used prior donations for dental work and specialty lenses, but I really need help getting home within the next couple weeks. I am immensely grateful for everything that has been donated, and amazed at the amount that I have received. Eyes and teeth are very important!

I will post another update as soon as I am able to. In the meantime, stay frosty :)

As if things weren’t complicated enough…

Today’s blast percentage (percentage of leukemic cells in my blood sample) is 79, down from Friday’s 88%. I did not receive any transfusions today. I’ve created a chart below for easier tracking.

My case manager called this afternoon & told me that instead of seeing my cancer doctor on Thursday that I will be seeing her tomorrow. We are also starting day 1 (of 10) of round 2 of chemo tomorrow. I also have the Visiting Nurse Association coming to the house tomorrow morning to begin physical therapy at home (yay!) and after chemo I have another nurse visiting me in the home (my insurance company’s House Calls program).

Wednesday we pick my Dad up from the airport in the morning (yay!), then it’s off to the hospital for bloodwork, an appointment with Infectious Disease (follow up on the legs), chemo, and a couple friends are coming to the house that evening.

I have all but 2 days booked through the end of the month, and it’s all subject to change at any given moment. As my Case Manager says “With Leukemia, we are always flying by the seat of our pants”. I am trying very hard to keep up. I really hope this next round of chemo gets the disease under control without killing me.

Percentage of leukemic cells in my blood samples:

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%

blast chart 4/13

for charting. nothing to see here, move along…

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.

blast chart 4/11

for charting. nothing to see here, move along…

blast chart 4/10

for charting. nothing to see here, move along…

What’s next? We have options…

I had an important appointment with my cancer doctor today.

Short version: We will begin another longer round (10 days) of the same chemo drug as soon as possible, then play the waiting game again. We may use another drug with the 3rd round of chemo if needed. My doctor will work hard to make sure I get oxygen, as breathing was a major problem during this last round of chemo.

Long version:

I have 2 new gene mutations:

The NRAS gene, found in about 10& of patients with my type of cancer. There may be some clinical trials, but most of the time the trials are for patients with an organ cancer, not blood cancer.

The SMC3 gene, found in about 1% of patients with my type of cancer. This gene has an antibody therapy called Mylotarg that can be used either alone or with chemo. We plan on possibly using it with round 3 of chemo. Normally there are 2 doses, given on day 1 and 5. I will need to be in the hospital for a couple days with each dose in case I have an allergic reaction.

The chemo pill I started last Friday is to hopefully bring down my white cell count, which is high (this is not good and is directly associated with the disease). It will bring down my other blood counts as well, like with any chemo drug.

Once my blood counts stabilize, we will plan on doing 10 days instead of the previous 5 days of the same chemo drug. This could be any day.

My doctor confirmed that unless we can get this under control, we aren’t talking about months that I have left.

My doctor is going to do whatever possible to get me on oxygen. My body’s biggest problem with the chemo was that I could barely breathe for a few days. I feel like I could tolerate a harsher chemo drug if I could breathe better. I have an appointment tomorrow to do a walking test. I will have to use an assisted device (rollator) for the test. Hopefully I can walk fast enough for my lungs to show how terrible they can be. I also have an appointment tomorrow with Infectious Disease to look at my legs. I will also get more bloodwork tomorrow, and I have my first appointment with my therapist since my relapse…it will be a fun talk.

I plan on getting another update out tomorrow on bloodwork & the walking test. Hopefully no additional drama is thrown my way in the meantime.

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 :)

blast chart 4/8

for charting. nothing to see here, move along…