Hard. In the last two weeks I’ve lost my keys, my boyfriend and my health insurance. I’m over the keys, although what a major pain in the ass. The end of my relationship, a little harder. I was having a really good time and just never saw this coming. We’d never quarreled or had a cross word but everything unraveled quite suddenly and in such a way that I felt rather like a bird who had flown into a window. Absolutely stunned. However, once I’d shaken my feathers, it was clear that I was better off flying solo. Today I availed myself of an unscheduled appointment with my social worker/therapist–just to check under the hood. It would seem I’m good to go but I think I’ll take a little breather before I try dating again.
But the health insurance, oh my. When I first realized I’d missed a payment I overrnighted my appeal. The post office confirmed that my missive had been delivered last Saturday but when I called WageWorks yesterday they had no record of having received it. And they told me that it would take seven to ten business days to decide my appeal and that the clock would not start ticking until they processed it. I faxed another copy of my appeal to them yesterday but realistically, I will not know until the end of the month whether or not my coverage under Cobra has been reinstated.
It sucks, really sucks, although I own this—it was definitely my mistake. My excuse (and yes, I used it) was that the therapy I am on has cognitive side effects. Sad but true. Anyone who knows me well is quite aware of how challenged I am when it comes to memory. I mean, I have a feeling I’m forgetting something but I can’t remember what (haha). The other night I ordered a pizza, gave them my phone number and then immediately asked if they wanted my phone number. Ten second lag there and it was gone.
This is problematic in a number of ways and as I consider my future I wonder if I will have to go back to work and if I do, how will I manage. It’s not that I’m not intelligent or capable of certain things but when your memory is an issue, it really throws a wrench into things. And in my own case, it might be more than a side effect of my current therapy. Dr. Shaw and I have discussed the possibility that some of my cognitive challenges may be a result of the number of therapies I have had, including two different platinum agents in chemotherapy. And there is no way to know yet if the Gadolinium deposition on my brain is symptomatic–just not enough data and in my case, too many confounding details.
So I muddle along. The good news is that I am less apt to dwell. The bad news is that it is both frustrating and frightening at times to not be able to recall things. Simple things like pushing a submit button, when paying for your health insurance online 😦
life and breath: outliving lung cancer 
Oh Linnea,…….. so many things are going on and it is hard to deal sometimes. You have been “dealing” for a real long time. That is a great thing and sometimes exhausting. I’m sorry about your boyfriend. He’s NOT strong enough for you, period. The freakin’ Cobra payments are so stressful
to not forget. I also had to pay for 18 months. The fear of God was in me because both my husband and myself have cancer. I lost my job at the exact time he was getting treatments. It was just awful to have to remember that payment. Totally understand not hitting send. Can we help with your appeal
by sending letters to your Cobra company? I believe it could help if your support team flooded them BEFORE somebody who doesn’t know anything about you and what you have endured says no. Thoughts?
Linda, you are so sweet. And yes, missing a payment terrified me which made it all the worse when it happened. I am going to call them tomorrow to see if I can get a sense of where things are at. And I may reach out to my ex-husbands employer, as the my policy is part of their group plan. What I hate most about Cobra is that it sets you up to fail—they would like nothing more than for you to make payments only to lose coverage. It’s brutal.
xo Linnea
I have the memory problem too. I got annoyed in a restaurant that they had not taken my order when I had already given it. I went to Friday services on Wednesday. I go to look something up on line and forget it before I can push a button. I only had one course of carbo alimta and five years of tarceva. Not as many scans as you but plenty. I am afraid to do serious work because of memory issues.
Praying you get your insurance sorted out.
If so-is there a way you can put it on auto pay?
Please keep writing. So many of us feel the same or similar things but can’t put it in words as well as you.
Because of you I will be using less gadolinium.
I am wondering if there are any kind of classes or things that can help improve memory. Will look into it if I remember.
Really sucks about the boyfriend.
Gale, I would do auto pay if my finances weren’t so tight and dependent upon that alimony check each month—until it arrives, I can’t pay my bills. I have worked hard on improving my memory. I certainly think far more clearly than I did when I started on lorlatinib and my long term memory has in large returned but the short term is shot. Glad you are aware of the gadolinium—we have to advocate for ourselves here.
xo Linnea
I feel your pain. I can’t believe all the coping mechanisms I’ve already come up with. I also distinctly remember moving my pill bottle, going to the next room and not remembering if I actually took my pills. I don’t think anyone can understand having cognitive side effects unless you’ve experienced it. The feeling of frustration is maddening. I don’t know what I would do if I lived alone. The hubs had to remind me that we are getting picked up for the airport ride for the next trip to Boston!! If I lived alone my friend’s arrival would have been a total surprise! Keep writing lady. You speak for all of us!
Regina–thank you for validating my (our) experience. It is scary and frustrating both and I do feel at times that people doubt me because as you said, unless you experience it to the degree we do, it is difficult to imagine. Glad you have that good support at home 🙂
xo Linnea
Hello again dear Linnea. I’m so sorry you’ve had more bumps in the road and it enrages me that one memory slip (you’re not alone!) can render you so vulnerable. By way of consolation – Trump is on our side today! And sharing his opinions on Brexit! Oh and he just said we all line him and agree with him on immigration!
Liz, just keep him please–we need a break on this side of the pond 😉
xo Linnea
Dearest Linnea, I am so sorry that this is all going on. I can empathize with you. The long term effects of treatment and all the scans have also taken it’s effects in my poor brain too. I used to pride myself on being able to remember the smallest detail, now I’m lucky if I remember to pay all the bills on time, now I get called at least once a month because of over dues, and I am mortified. I’m sure my credit rating has taken a nose dive as a result! Heaven help me when it’s time to re-negotiate my mortgage. It effects my relationships too, people will say, “I’ve told you that”, countless times, I can hear the frustration in them. I can’t help it. The point of all this is not to woe is me you, it’s to say, you aren’t alone. You dance through my thoughts often and I wish you calmer waters.
Thank you too for validating and yes, I relate to each of your descriptions. I had the best memory–almost photographic—and I have had to learn a whole new way of coping. I am actually afraid to look at my credit rating now. All of this is why I am lobbying for more supportive services. When you live alone as I do it is sometimes overwhelming and I could really use some help/counsel at times and I see no reason it could not be a perk of clinical trial participation and or an option provided by the hospital for all cancer patients. We have unique challenges and many of them are not obvious and yet remain debilitating. So hey, thanks for saying hey 😉
xo Linnea
Hugs. Chemo-brain fog is a known thing. There were keys near the cards on the A mill loading dock today. Don’t know how long they’ve been there.
Linnea, I am so sorry that things are not going well for you right now.
Just remember that you are such an inspiration to so many of us. I wish I knew something to say or do that might help; it is about all I can do right now is keep my head above water mentally and physically. Thankfully I am on Medicare and have a good supplement.
If Your insurance does allow you back in, could you have it set up for your payments to automatically be taken out each month? That is what I do.
Here’s hoping things will start to look up very soon. 😘😘😘
Mary, I am sorry to hear you are struggling as well. I would do auto pay if I had enough money in the bank but things are too tight and dependent each month on a check arriving in time. And this time I was delayed because of losing my keys—I couldn’t get into my mailbox 😦
xo Linnea
Thank you—I check the loading dock.
xo Linnea
Linnea: AArgh! Sometimes……….it just seems as if life just can’t get any worse…..and then it does…….and then, hopefully it gets better again. Your strong attitude will eventually get you through this scary, no doubt overwhelming time of worry, but until it does, we’re all listening and caring. Wish there was more I could do to help, but for now am sending a huge virtual hug – a really big one – and lots of prayers that things will improve for you.
Joyce, hugs of all types always help. It could be so much worse and I know that—I am just temporarily overwhelmed in this when it rains it pours scenario.
xo Linnea