Up until now, I think I have been lucky with the side effects. As I mentioned before my Taxol/Avastin doesn’t make me nauseous, but lately I have been feeling more and more tired. I also have some neuropathy in my feet that makes it difficult to run for as long as I used too. I also find that I do get more out of breath too. But today as I was about to meet a friend for a mid-day movie, I had an uncontrollable nosebleed. It all started with an innocent attempt to blow my nose. Before today, I would blow my nose, and mostly get a little bloody mucus, but nothing much. This afternoon as soon as I blew my nose, my nose just started to bleed and bleed. I most have been in the bathroom stall for a good 10-15 minutes, and even called my husband at one point because I was worried that it wasn’t going to start. It finally did stop, but now I have to be more careful with my nasal habits. I will have to be especially vigilant as it gets colder, as the dryness will exacerbate my sensitive nasal passages. I have a feeling that my neti pot and I will become the best of friends.
Club Chemo: September 1st, 9:15 AM August 26, 2009
Next Club Chemo is Tuesday, September 1st, 9:13 am! I have two maybes already, let me know if you can make it. Spots go quick. I think this one should be the back to school special. Maybe I will bring school supplies…
Hooray for my neutrophils! August 25, 2009
I just finished my treatment today, and special thanks to C and D, and S for joining in Club Chemo! C and D bring their crosswords to do, and I suggested maybe I can try to make a special honorary Chemo Club crossword puzzle for them!!!
Now, that would be fun!
I am still feeling a bit tired from treatment, but doing stuff on the computer. Today when I went in to get my blood counts checked before treatment, we were initially worried because we thought that now my red blood counts were too low, but my doctor had them redraw the blood to make sure (we had a new nurse today – a traveling nurse who seemed to be getting used to the routine…) Then with the second draw, the blood was fine, and my neutrophils were much, much higher. 4.9!!! Usually I have been at 1.5, or 1.6 or at my lowest .8!! (I really feel like I have failed when I get the results back — it does feel a bit like taking an exam and having no idea how you did. But, I really did study!!!)
So the plan is to take today and tomorrow easy. I have a little closet project that I may tackle tomorrow if I feel up to it.
Also, earlier I made some calls to do some health insurance research. We are considering switching to the default NYC plan because it would be so much cheaper than what I am paying now, but it is hard to get them to answer in specifics. My favorite frustrating part of the conversation was when I asked specifically about out of network coverage the lingo reads”after the deductable is met, we cover 100% of allowable, customary, reasonable charges.” Well, what is considered allowable??? I asked the insurance company and they said it depended on the type of visit and the code, I offered a specific example – an invoice I had received from a doctor. They said I had to ask the doctor’s office. I contacted the billing department for the doctor’s office, they said the insurance company determined the amount!! Sounds like a scam? This is what we call health care, and I am one of the lucky ones who has it!!! How can we let companies get away with something so important as our health? Can you imagine walking into a store and trying to find out how much something is, and the saleperson responding “Well, it depends who is buying it and what you are going to use it for, when you are using it and how you will be using it for, etc…” It would never happen, and yet we allow it to happen to one of the most precious things we have — our lives.
I don’t know if the current health reform addresses this issue, but it definitely needs to be changed! No one should have to speculate about what is REALLY covered and end up making decisions that are inevitably somewhat blind-sighted.
Take that town hall meetings!!
Next Club Chemo – 8/25/09 10:00 AM August 20, 2009
Just had another treatment yesterday, so far so good — just the usual side effects, a little tiredness. My white cell counts were just high enough to have my chemo. So, I continue with my four shots of neupogen every week.
So, let me know if you want to join in the fun and games next week!
Cancer does affect your appearance. For me, it’s mostly dealing with hair loss, but for others the changes can be more dramatic. Here is one excellent essay from Brian Nelson who has had to deal with extreme swelling of the head and neck (a condition know as moon face) and how he copes, and how he would like others to respond. The key points are here:
What do I want people to do? I want everyone to feel comfortable around my appearance. Don’t worry that you have to address my illness in a compassionate way, or at all. Just say what you want when you want. I’ll let you know if you offend, or if I need something. What I enjoy most is watching others enjoy themselves.
My friend Steve said to me, “Well, you’ve got that portly Asian look down now.” That was nice, funny and quite off the cuff. It made me feel that I could relax and not worry that the conversation was going to slide into the Grand Canyon of medical awkwardness.
I think the last line is extremely well put, I don’t always want to have conversations that reside in a vast Grand Canyon of awkwardness.
Click here for the full article.
Club Chemo-8/19/09 August 14, 2009
Next meeting of Club Chemo will be on Wednesday, August 19th at 10:30 am. Since I will be away on Monday, we’re doing Wednesday instead. I’ve got one lucky person signed up already. Want to join? Just let me know. It’s at 425 E 61st Street, 8th floor. I can guarantee that I will be waiting for a bit. I *hope* to be done by 1:30ish, but who knows??? Come see for yourself what Club Chemo is all about!
We can do it town hall meeting style.
Mixed Scan Results August 12, 2009
So, the results are mixed. But the plan is that I am going to stay with the same treatment and get rescanned the third or fourth week of September. Reason is that there was a long gap between my last scan and this scan. My last CT scan was end of May (May 28th). I didn’t get to start Taxol treatment until June 29th or so because I had pneumonia before then. So the reasoning is that there hasn’t been enough time for the Taxol/Avastin to do its thing, and things were probably alot bigger before this scan in August since it’s been almost two months since I last had a scan. So, the news is very mixed. I half expected it, but I was secretly hoping to be surprised by good news. The one hope that I cling to is that my tumor markers have been decreasing, so that must be a sign of something, right???
To date, I have only had 5-6 treatments in total of the Taxol/Avastin combo, so it is still a tad early, but it’s still hard not to think about what the next steps might have to be in case it doesn’t work…My oncologist is being pretty aggressive with this because we don’t want things to get bigger. At this point I have cancer in my chest, liver, lymph nodes, and potentially lung (at least it is suspicious looking). When I look at that on paper it is scary, but slowly I have just come to accept things as they are. After all, I am not really in control of this thing, I can only try to do my best, and enjoy each day as it comes.