Taxol #1 uneventful!

First of all, amazingly enough I did sleep last night – a whole 4 hours!

Taxol #1 today was entirely uneventful. Boring even. Which is the best we could hope for! So, so far so good. My friend Heidi and got lots of reading done, and it’s so nice to have her here.

I did get my preliminary lab results from the morning, and the biggies are all in normal range. White blood cell (WBC) count, red blood cell (RBC) count and platelets are all doing quite well.

However, there were a few smaller things that were off, which of course piqued my curiosity, so here goes:

1. My lymphotocyte count is low. Lab tests online reports that “Lymphocytes are natural killers of infection and regulators of antibody production.”

But from my googling it looks that’s normal for taking steroids, especially dexamethosone. In some populations even 1 mg of dexamethosone can decrease lymphocytes and I took 10 mg. As my WBC are normal, it just means that I have few T cells and B cells (that make up lymphocytes) running around to fight off infection, so I’m going to be a little more conscientious about hand washing, touching my hands to my face and nose etc. And hopefully when the steroids wear off the lymphocytes will increase.

2. & 3. Also, my RDW was slightly high, and MPVs were low, so:

“# Red cell distribution width (RDW) is a calculation of the variation in the size of your RBCs. In some anemias, such as pernicious anemia, the amount of variation (anisocytosis) in RBC size (along with variation in shape – poikilocytosis) causes an increase in the RDW.”

“Mean platelet volume (MPV) is a machine-calculated measurement of the average size of your platelets. New platelets are larger, and an increased MPV occurs when increased numbers of platelets are being produced. MPV gives your doctor information about platelet production in your bone marrow.”

So, what I assume is that even though I still have enough red blood cells, white blood cells and platelets, the production process for all 3 in the bone marrow is decreasing, and not as many new ones are being made. Which is normal for chemo because chemo impacts the bone marrow. And my neulasta shot tomorrow will hopefully help with that.

It’s funny, my doc tells me not to worry about these things, and it’s not so much that I worry but that I like to have at least a very simple grasp of what’s going on. If your interpretation is other than what I figured out here, let me know! I’ll ask the oncology nurses more when I go in for my – gasp – $7000 white blood cell boosting count shot (neulasta).

Up all night

Sorry for not posting.  I’ve been a little wiped out.  Things finally turned for the better yesterday.  So I’ve had two days of okay as opposed to icky.  The good news is that the Adriamycin/Cytoxan stage of the chemo is over!

For the next 2 months, I’ll be getting a different type of chemo: Taxol.  It chases cancer cells and kills them in a different way than the other chemo did.  It’s complicated, but there are many different ways to kill a cancer cell, and typically chemo combos try a variety of strategies.  So, taking Taxol will keep increasing my chances of staying cancer free. 🙂

However,  Taxol is delivered in a substance that can cause highly allergic reactions, so, I get to take 5 steroid pills at 11 pm, and ANOTHER 5 at 5 am.  Did I mention that nighttime is when I like to SLEEP???  I know getting through the new chemo well is the top priority, but oh my.  I guess the good news is that I’ll be so wired from the steroids that I won’t notice how tired I am from the lack of sleep.;0

Waiting

….for things to get better. I know that days can turn around on a dime, and I’m a-waiting. On the list of positives: I am slightly less queasy today, it’s not going to be as hot (thank goodness!) AND I’m holding out the carrot of going to see a movie after work. Am still metaphorically crawling from one activity to the next….bone tired. Would happily take a blanket to the river and hang out in the shade reading a book all day…..needing some deep relaxation time.

Cancer treatment is stressful – it’s kind of bizarre actually, the antithesis of what I think would truly be needed, which would be deep care and relaxation, a connection with the sacred, to be in nature, freedom from everyday logisitical stress, to play music, play with children, make art, play games, eat wonderful meals, rise with the sun, fall asleep under the stars, hike, hang out around a campfire, laugh a lot, swim in clear lakes, raft warm rivers, stretch, run, sauna…..kind of like summer camp. Wait – I know where a place where I can do most of that, it’s just a matter of being well enough to travel 3 hours away, to a friend’s land on Willapa Bay in Washington. They have a wonderful gathering the first week in July. We’ll see!

To hedge my bets re: timing, I’ve also applied for retreats at Harmony Hill and a fly-fishing camp, but those are in the fall.

PJ day

One day at a time, and I’ll feel better tomorrow, right? Starting the post-steroid crash, and everything just feels icky. Nausea. Blech. Off to take a bath and go to bed. And thank goodness for reruns on abc.com.

And many many thanks to my friends Alicia and Scotty, for flowers, a clean house, yummy food, clean laundry….and for being there. It makes such a big difference.

Also, looking forward to seeing my dad tomorrow! First time since the appt where the oncologist convinced us to do chemo – he had a knee operation a week after I had my surgery, and we haven’t been able to travel to see each other, so I am SO glad he’s able to come up. Distance is really hard.

A/C # 4 of 4

Yep, almost done with the Red Devil! What a milestone. I’m looking forward to visiting the Washington Park Rose Garden at the end of the day. Chemo is so icky that I tend to want to fill my memory with something really beautiful instead of the chemo, so that I have something else to hold in my mind for the day. Plus my friend Alicia is here to keep me company, a definite positive.

Almost done with A/C!

On to the last adriamycin/cytoxan chemo on Thursday!! So excited to be almost done. These past few days I’ve been super tired because the chemo caused my feet to swell, so I could barely walk, so I haven’t been able to exercise, which in turn makes me tired. I miss my daily walks around the neighborhood, a lot. More than I would have imagined.

My SIL, her mom and my niece and nephew were here last week and that was wonderful. Many many thanks to Katie’s Nana, as she put up a curtain rod and did multiple other house repairs. Go Nana!

And many thanks to my SIL, Anne, who spent a whole day organizing my medical bills and helping to figure out financial aid. With the help of the Breast Center social worker, we continued Anne’s good work, got a lot of paperwork sorted, and applied for grants.

The good news is that I’ve rec’d three grant awards so far, two of which seem to be accessible. (Only being able to work part-time and having almost $400 in additional medical costs per month gives me a budget gap of anywhere from $600 – $1000 a month which I’ve been trying to cut and fill, so I’ve spent days and days working on budgets. Yep, life without disability insurance bites. And to think that I almost got us disability insurance at work in January, I just put it off a little too long. The paperwork was in the works. Sigh….)

CancerCare is sending $150 off the bat (bless them) and will reimburse for $300 in prescriptions, with their funding from AvonCares. Thanks to my sister-in-law and the social worker at the Breast Center, over $300 in receipts got sent off on Friday, so we’ll see how many of my pain and anti-nausea prescriptions they’ll actually cover.

The Copay Relief Fund is supposedly awarding $2000, with the final decision June 15, but it all seems to be in the works. They’ll pay for co-pays for prescriptions (past and future, which rocks) and for co-pays for doctor’s visits (also very good for reimbursement, but not so useful in the future because I’ve hit my insurance max-billed-out-of-pocket so I won’t have to pay future copays anyways). I doubt that I’ll be able to access half of the award, but ya never know. It’s good to have as back-up for worst-case scenarios, and I think it’s good for a whole year.

However, the Copay Relief Fund staff told me they do NOT cover co-insurance, when right now I have about $800 worth of co-insurance bills, with $400 or more expected. Let’s hope that some financial aid comes through for the co-insurance, because that’s the greatest need. Otherwise I’m going to be paying things off monthly for a very long time.

Also, the Patient Access Network (PAN) awarded me up to $7000, but it’s for such a specific purpose that I’ll be able to access maybe 1-5% of that – it’s only for chemo infusion drugs and my health insurance already covers that. Hopefully PAN will cover the co-insurance fees for the infusions at the very least. We’ll see.

Thank goodness for the financial aid awards; wish me the best on 4 more applications: Healthwell, Sensational in Survival, Modest Needs and Providence’s own financial aid. If you have ideas of other places to apply, let me know!

Denial

The inside of my purse, after my head was shaved, after I took the “non-essentials” out:

A/C #3, Day 3

Day 3, chemo round #3, with friends from Boulder, Seattle, Ottowa and Vashon. A wonderful day. That’s me with my new wig on the far right.