Cancer Made Me Paranoid

Yes, it did. Now, every new ache, pain, or twinge, has me scared that it’s more metastasis, or a weird side effect of chemo. No matter how much I tell myself it’s neither of those things, the thought still flits through my head. Headache? Must be brain metastasis. Backache? Must be metastasis to the bones. Stomachache? Well, you get the picture.

I think I have lost the ability to remember having those same aches/pains/twinges before I had chemo or cancer. It’s strange how our memory can play tricks on us. I wake up some mornings with my fingers asleep because of the position I was sleeping in, and then I get scared that it must be a side effect from the chemo. (One of the possible side effects is numbness of fingers or toes.) Of course, it’s gone within seconds of waking up and I know it has nothing to do with the chemo.

Sometimes, ignorance is bliss. If I didn’t know all the possible side effects, or how fast lung cancer can metastasize, would I be this paranoid? Probably not. But I do know. It’s important to know the side effects that could be a major problem; but then I worry that major side effects may mean changing the chemo regimen again, and I wonder how many times we can do that before running out of options.

So in the meantime, with every new ache and pain and twinge, I take a deep breath, tell myself that all is well, and go about my day.

Cancer sucks Part 2

I have been feeling rage and despair for the last couple of days along with a sense of urgency to make this Xmas special because there’s a chance it could be my last one in this life. My emotions are still riding a roller coaster from the depths of blackness to feeling as if I will beat this. I can actually go for hours at a time without even thinking about cancer, and there are times when that’s all I think about. I don’t like tearing up for no reason or because of some sappy TV commercial. Then again, it could just be the time of year. But I still feel as if my diagnosis is totally unfair – I still have a lot of living to do.

Intellectually, I know that what I’m feeling is normal and it’s okay to feel it. I sometimes think I will be one of the small percentage that survive; and other times I’m sure I won’t be. The odds are against me, but then I have to remember all the times I have fallen into that small percentage of people to have some side effect, or something. For example; I tried the contact lenses that were supposed to reshape the cornea. I wore them every night, and within a week, I no longer had to wear contacts or glasses during the day. That was a liberating feeling! But within a few months, my eyes began to revert back to the way they were even though I continued to wear the special contacts overnight. My eye doctor said, no problem, we’ll just change the Rx and you’ll be fine. Only a very tiny percentage of patients have it happen again. Well, guess who was in that tiny percentage? And there have been other instances like that.

Here’s hoping that my being in that small percentage will work for me this time instead of against me.

Dealing with health insurance

This is a bit of a venting post as I’ve been trying to figure out bills and what the insurance pays and what applies to the deductible and what the health provider is allowed to charge me. Don’t get me wrong, I am so glad I have good health insurance, but trying to negotiate this maze is frustrating to say the least! I know that certain providers sign a contract with the insurance company and agree to accept the insurance company’s payment schedule. But when the provider is billing $5,000 and the insurance company agrees to pay $750; how is that provider meeting their bills, especially when I’m only paying a $30 co-pay?

I have a large deductible on my insurance – $5,000 – and I have no idea how I’m going to pay half of that (I will get reimbursed for half). We have savings that could get wiped out by this, but at least we have savings. In addition to that, I’m paying $60/week in co-pays – sometimes more. That adds up in a hurry. And on January 1st, the $5,000 deductible starts over – but so does the $2,500 reimbursement.

It may be a shock with these bills, but how do people manage without health insurance? I’ve seen how much all these charges are and can well understand how people can go bankrupt and lose everything while trying to pay medical bills.

Today was the day I tried to get organized with all the Explanation of Benefits or EOBs from the insurance company. I have also had a long conversation with one of the hospitals that sent me a statement – no detail on it at all – to find out why their amounts didn’t match the EOB.

So here’s how this works with my insurance: an EOB is posted for every provider at some point after they have billed my insurance. The EOB shows provider, procedure, charges, what they allow, what they won’t pay, what the provider is allowed to bill me. So if the bill I get doesn’t match, I want to know why.

The person I spoke with in the provider’s billing office said they don’t normally send itemized bills just a statement. If I’m having to pay some $4,000+ I want to know what I’m paying for. She did agree that was reasonable and said she would send an itemized bill. The other concern I had with the bill is it only gives 7 days to pay – now who has $4,000 on hand in their bank account? I know I don’t have to pay it all at once; that I can make payment arrangements, but that is still a lot of money. Do people really pay from statements that don’t give a date of service or name of procedure? How do they know that the billing is correct?

So my EOBs and bills are somewhat organized, so that’s something.

A Waiting Game

It seems to me that cancer is a waiting game. I wait for a diagnosis; I wait for treatment; I wait to see what the side effects are going to be; I wait to see if the treatment is going to work. And the waiting part is wearing. And so are the side effects. I’ve been having weird, transient, stabbing twinges today. That isn’t on the list of side effects anywhere. So I’m not sure if it’s from the chemo or not. It’s not really pain. So I guess I’ll see what happens tomorrow.

Today my hair started falling out. And even though I knew it was going to happen, it was a shock. All I did was run my hands through my hair, just like I usually do a lot during the day, and there was a lot of hair in my hand. My hair has never been thick, or full, but fine and thin. But the thought of having no hair at all is a little depressing. I tell myself I will save money on cuts and color, on shampoo and conditioner, and feel I’m lucky this is going into winter so wearing a wig won’t be so unbearably hot; but it really doesn’t help. I’m not a vain person – I can go all day without looking in the mirror – but I hate the thought of being bald. On the other hand, maybe I’ll like it and keep my head shaved. No, I don’t think so.

Routine

While it’s still fresh in my mind, this is what my treatment days are like, in case you’re interested. If you’re not, you don’t have to read this – I understand.

My appointment was for 9:20, but we always arrive at least 10-15 minutes early, because we leave early in case there are problems with traffic and stuff. I check in at the front desk. P always has a cheery greeting; he signs me in and takes my money (co-pay for every visit), then lets the team know I am here. I have to fill out a check sheet every time, which is basically any symptoms I might be having that are ongoing or new. They have a neat system that I’ve never seen before; on the print out that goes to the team is a short description of what I’m wearing and hair color. This way nobody has to stand at the door and yell, the team member comes right up to me – it seems like a great system and seems much more personal!

Waiting time varies depending on patient volume and how much time each one needs. I love that I never feel rushed – even with the doctor – because each staff member takes all the time we need for questions. Once it’s my turn, there’s weight, oxygen levels via a little thingy that encloses the end of my finger (it has a technical name, but it escapes me at the moment), temp, pulse, and blood pressure, to be recorded. Then it’s into a room to wait for the team leader (J today as my regular K is on vacation this week). I was more anxious than usual today as I know Friday’s blood work included a test for tumor markers; my first test was high but not too bad at 70.3. Testing for these markers over time shows increase (tumors growing or not responding to treatment), stays the same (no response to treatment), or decrease (tumors shrinking or responding to treatment). My result was a 34 – just over 50% decrease. That combined with the fact that my cough went away (the initial reason I went to the doctor) means the treatment is working. So we were pretty happy with that result (euphoric is more like it). Now just because the marker decreased doesn’t mean there’s a cure in the making, but it does mean we can manage the disease for now.

J went over the protocol for the new drugs; answered a bunch of questions; checked out a few things like lungs, heart, etc. Then we were ready!

The infusion room wasn’t as busy today and we were able to easily find a recliner with visitor chair. The room is divided into 3 sections with 8-10 recliners in each section. J gave my chart to one of the nurses who took it to the admixture room (where they mix up the IV bags). Then we had to wait some more for everything to be mixed up after I signed a consent for today’s treatment. That included a long list of possible side effects, none of which I want to have! Things like tingling in fingers and toes which could lead to permanent nerve damage; hair loss; nail loss (didn’t know about this one); mouth sores; low red blood cell and platelet counts; increased susceptibility to infection and bleeding; and the usual constipation, diarrhea, nausea, vomiting, etc. And I’m sure I left some out!! But if it knocks down the tumors, I’ll deal with the consequences!!

C was my nurse today and having the power port made it so much easier for her and for me as she didn’t have to find a good vein, and I didn’t have to worry about more bruising to my delicate hands. (Ha ha) Today there were 3 pre-treatment drugs in small IV bags; one anti-nausea, one antacid, and one antihistamine. Then it was time for the heavy duty stuff. One bag went in over a 2 hour period after an initial very slow drip to make sure there weren’t going to be any major side effects right away; the next one over 30 minutes. Both were in small bags so I didn’t feel like a blimp from all the fluids when we were done. There was some pre- and post-treatment flushing of the port and we’re done. And by the way, when the saline is pushed into the port I can sort of taste it – is that weird or what?

I spent the time listening to my iPod; talking with other patients and the nurses; reading; and talking to Steve, who got antsy so I had to send him home for a while. The patients exchange tips and information, which is great. There were a couple of new people and everyone chipped in to let them know what to expect – great camaraderie!!

We were home today shortly after 2; much better than last time when it was after 5 by the time we got home. I’m feeling good but on my guard for any symptoms of those nasty side effects. C told me to call any time if there were any side effects, and if I wasn’t sure if I needed to call or not, to call anyway. There is always a doctor on call 24/7.

I certainly feel fortunate to have this wonderful group of people on my side. Everyone, from business office, to schedulers, to med assistants, to nurses, and nurse practitioners, and the doctor, has been just wonderful! We can’t say enough good things about them. They are always upbeat yet business-like. The nurses in the infusion room are always joking around with each other and with the patients – it’s almost like a big party. Yes, cancer is serious, but that doesn’t mean there has to be a bunch of long faces; we have enough of that when we’re at home and talking about treatment and symptoms and contingency plans and all that sort of stuff.

And I feel fortunate for my family and friends who are cheering me on and taking this journey with me – you rock!!

I am blessed.

🙂

Dreams

When I first began my chemo journey, someone (and I don’t remember who it was) told me that people on chemo tend to have more vivid dreams. I don’t know how true that is, but I have been remembering more of my dreams lately. Usually I wake up with a faint hint of a dream that disappears like a will-o-the-wisp as soon as my eyes are open. The past three weeks, the dreams have stayed with me, sometimes for days, and it always seems I dream of places that are familiar, although when I wake I have no remembrance of ever being there.

There are certain dreams that I seem to have over and over; and there are some dreams that visit me when I’m awake. One dream in particular has stayed in my memory since childhood. I’m not going to bore you with details on any of these dreams, but some are particularly bizarre, and I think we all have those.

Dream interpretation is not an exact science, but I do believe that dreams are a way for us to process information that seems impossible when we’re awake. So it makes sense that my dreams are more easily remembered right now as there is so much information to process and remember.

I am looking forward to the new regimen starting on Monday; I’m eager to find out if it’s really going to be easier on me than the last one. Stay tuned…

Sadness and Anger

I felt more energetic today and was able to accomplish quite a bit. I even went grocery shopping with Steve. Tomorrow, I will meet with team members to see how Friday’s blood work looked, and to see what our next steps are. I am scheduled for a 2nd chemo treatment a week from tomorrow, but at least this time, I’ll know to expect to be sidelined for most of the week.

I am reading more information about lung cancer, and I’m angry that there is so little attention paid to it compared with other cancers that affect women (men, too, but I’m a woman.) The research dollar amounts spent on Lung Cancer are abysmally inadequate given that lung cancer is not generally diagnosed until it has already metastasized, and the survival rate hasn’t changed much in 40 years. Where are the “Race for the Cure” and the walks, and all the other fundraising efforts for lung cancer. Did you know that the ribbon color for lung cancer is white, or pearl; because it’s the ‘invisible’ cancer?

I am also angry that people assume that if you have lung cancer, you must be a smoker, and therefore it’s your own fault you got this terrible disease. This needs to change. Until we remove the stigma, people won’t want to give money for research. Nobody deserves cancer of any kind.

It also makes me sad that I have this terrible disease. There are days when it doesn’t seem possible; the doctors made a mistake; the X-ray is wrong; the C-T scan and the PET scan and the biopsy are all wrong; even though I know in my heart they aren’t wrong. I wrestle daily with this diagnosis, and I look for hopeful signs that the disease is waning. But there are no signs to see; it’s too early. And I dissolve into tears once again.

Our dogs know there is something wrong. Peanut, who normally isn’t affectionate, has been much more needy than usual. Spud has been glued to my side the whole time I am home; this isn’t that unusual, but he, too, is much more needy. Steve has taken over their feeding. Probably an overabundance of caution on our part as my immune system is still quite strong. But on the other hand, they need to be used to a different routine if I shouldn’t survive as long as I would like. Steve took Spud to the groomer yesterday so he and the groomers know each other.

I am doing what I can to make sure Steve and the dogs can manage without me even as I continue to fight. It is a strange dichotomy to prepare for one’s death but hoping it won’t be for a long while yet. I have told my sons what the odds are, but I’m not sure even I believe the poor survival rate.

I would like to sleep through this whole ordeal, but I know I can’t and it wouldn’t solve anything. So I will continue to fight through the tears…