Hi. This should have been posted a week ago, but I haven’t been up to it. I’m still not, really, but its past time. If it’s not coherent, please forgive me.
We have good news and bad news. I’m posting in the order we received it. You can read it in the order you want it.
The Bad News
On Friday, January 8, I went for another CT Scan. We got the results when we went in to see my oncologist on January 13.
The Dacarbazine isn’t working. The tumors in my lungs are continuing to grow. Two of them have merged, and my lung capacity continues to drop.
In addition, I’m coughing like crazy (productive, not dry.) We have decluttered so it’s easier to dust, and have gotten a fancy humidifier so it’s not as dry in the house. This has helped, but not solved the problem. In addition, I’ve been running a fever for weeks now. Currently, it’s 101.2° in spite of the fact that I took aspirin about two hours ago.
My oncologist seems to think the fever is caused by the cancer. Whatever the cause, between them, the coughing and fever are wearing me out.
The Good News
We heard from the genetic testing company today. I’m approved for 100% financial aid for four different kinds of genetic testing of the cancer, to see if there is a targeted biological treatment. So we will be moving forward with that. Anything that insurance doesn’t cover, they will.
Where We Go From Here
Since the Dacarbazine isn’t working, those infusions have stopped. Instead, I’ll be taking an oral chemo called Pazopanib (Votrient®).
It’s hideously expensive. Our insurance covers it, but our co-pay would be $3K a month. So we have filled out paperwork to get financial aid for that, too. There’s a program, from the drug company, that would get us the pills for free. However, it’ll be several more days (minimum) until we hear from them and I can start treatment.
So That’s Where We Are
I’m starting to really feel it, and am able to do less and less. But I don’t feel short of breath, and my O2 at this moment (according to my handy oximeter) is 96. Not as good as it’s been, but not bad at all.
Michael was really worried, because he thought that if the Dacarbazine didn’t work, the doctor would say there was nothing they could do, and he’d start talking about palliative treatments. Now he knows that’s not happening, he’s feeling some better.
Still, he’s isolated (like all of the rest of us) and having to take on more and more house work. If you feel like it, and you have his phone number, he could really use a friendly call. (He approved this, so it’s not like I’m asking behind his back.)
There are a couple of other things that look kind of hopeful in the offing too, but they are tentative enough that I’d rather not discuss them quite yet, in case they fall through entirely.
I’m still fighting! I haven’t given up hope, and I thank you all again for all your love and support.
Love all of you!
Robin
Sending prayers and good thoughts for you both I hope the treatments work and you will be back up to your normal healthy self sometime this year please take care and also a gentle hug to you both.
Oh Robin, Oh Michael.
I just want to hug you, heal you, help you both.
Keeping you both in our hearts.
Sending positivity, prayers and peace for healing, while visualizing this alternative concept of treatment as a healthy blessing for fresh beginnings. ::hugs::
Like the good news, dislike the bad news. Virtual hugs for both you and Michael from Nancy and me.
Thinking of you. Keep up the good fight. Blessed Be.
Thank heavens there is good news as well as bad. I hope hope hope that the genetic testing brings up something that will laser-focus on the cancer, and fast.
In the meantime Lara and I are sending you all the love and strength you can hold, to help you endure until a successful treatment comes through. All the (((hugs))) to you, and to Michael!
Been there, done that. Not fun no matter what part of your being is affected. Zen hugs. Thank you for sharing. If all I can do is healing thoughts, you got them. (Bwah!) I hope you can find the mental safe space to process this. BTW, keep a paper journal. You’ll need it in the future. Because everything that’s happening is coming too fast to process. Not only my experience, but a doctor said she notice that she missed memories of birthdays and such as she went through treatment. Take care.
I am glad, at least, that you are getting the help, both medical & financial, that you need. And, glad as I am to get these updates, please don’t waste any energy you don’t have on giving them.
Hello Robin,
We haven’t talked in many years. I used to buy some of your paintings at the various sci fi art shows. From The Vision, to Can I Keep It? and a few more. I’m sorry you’ve been sick, I know from experience with loved ones how trying it can be.
Hopefully whatever treatments they can find for you works and you can get back joy and happiness.
Oh, about the pill expenses, my friend who had the same issues got grants that paid the co pays, hope you find the same.