Posts Tagged 'cancer'



Gloom and Doom in the ER

Well, after my last post, my mother’s problems with the indigestion worsened to the point she was eating almost nothing — 6 prunes for breakfast and a piece of toast for lunch. Maybe 3 oz of Ensure if I was lucky. She didn’t like the Maalox at all, and said she thought it was causing her problems. Then I started noticing the swelling of her lower left leg, but at first just put it down to the neuropathy.

On Saturday we weighed her and she’d gained 4.5 pounds in a week without eating anything. Hmmm. She must be retaining water, and it did seem to be in the leg. Not only that, her breathing was becoming increasingly labored. On Sunday I realized it wasn’t just the lower leg, but the entire leg that was considerably swollen. And by Monday she was breathing hard just eating half a sandwich. I called her PCP and at first he signed her up for an ultrasound to see if a clot was causing the swelling — until he heard about the labored breathing and told us to go to emergency.

Oh noooo…. Not again!  All those people, hours sitting there, no water, etc, etc… We went expecting the worst. It was Monday afternoon, after all. All the people with ailments over the weekend would surely be there.

But they weren’t. There was hardly anyone there. At one point I was sitting in a waiting room with only one other person. This time, because the doctor had sent her in — and because of the swollen leg and labored breathing– they took her right back and started doing various test. When I came back with my lunch they were giving her a breathing treatment. Then it was off to x-ray. We sat in the hall for a while, and then they got her a bed. They did blood tests. Urine tests. The ultrasound. 

It was while she was away having the ultrasound that her emergency room doctor came in with results of the tests. He reminded me of Eeyore. He spoke very soberly and quietly. X-ray had shown fluid collecting in lower lobe of her right lung, between the lung and the chest wall. This, he said, was consistent with cancer. Not only that she had terrible numbers on her liver test. He had a paper comparing that day’s numbers with those taken back in February. “Something really bad is going on with the liver,” he said. He thought that was cancer too.

He could order a test to have the lung fluid drained and tested to confirm but… that would entail, he told me, a doctor sticking a huge needle into her chest to drain the fluid and could result in a collapsed lung. She’s 83. Even if it is cancer, would she be able to tolerate more chemo?  Probably not. It might be better, said he, to just let her pass and consider hospice.

Well, that was … not exactly shocking, but still… shocking. When she came back I told her, and she received it with her usual impassive demeanor. Then he came back and started beating about the bush as to what was wrong and I just told him that I’d already told her, so then he started talking plainly, repeating the description of the thoracocentresis with the huge needle and the collapsed lung. There were other dire side effects as well. Did she want to do that?

Well, it was 9pm by then. She was hurting, she was tired, she was probably shocked as well. She said no.

“Okay,” says he, “I’ll write up some prescriptions and discharge orders. And tomorrow you should try to get appointments with the oncologist and the primary care.” And off he went. Half an hour later he returned with his prescriptions… an inhaler and three pills she was to take by mouth. I looked at them and told him there was no way she could be taking more medication because she was constantly on the verge of throwing up. He seemed startled, then said he couldn’t send her home then if she couldn’t eat or drink. “I’ll have to admit her to the hospital. We can put her on fluids and get some nutrients in her and some pain meds and they can look into things a bit more tomorrow.”

So that’s what we did. When I left at 10pm, they were finally accessing her port to hook her up to the fluids and the morphine and promising to get her up to a hospital room as soon as possible. I was exhausted and everything seemed very gloom and doom. But I did wonder about the ER doc, and it almost seemed like a set-up by the kingdom of darkness to get us all upset…

Which is indeed what it turned out to be…

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Not Giving Up

Well, obviously I’ve missed by five-day a week PostADay goal these last two weeks, but I’m not giving up. It may be a bit messy in the weeks coming up as well, but eventually I think I’ll get back to regular posting. I’m going to try to do short things this week, as I will continue to be busy caring for my mother, just not as busy as last week. 

As it turned out, she wasn’t released on Tuesday the eleventh, but Wednesday. That was the same day my sister returned, so we had someone to stay with Mother at home that night and every night since. We’ve also got a cadre of home health nurses and physical and occupational therapists coming by. When we had the opportunity to have that back when she had the rod put into her leg, it sounded unnecessary, but I’m finding that I’m really valuing their assistance this time.

The biggest concern we were having since she came home is how much she has slept and how weak she’s been. She gets tired so easily, falls asleep sitting at the table and then would fall out of the chair if someone wasn’t there to catch her. Today we learned that when you lie around and do nothing, you lose whatever strength and conditioning you had at a ratio of about 1 to 3. So for every nothing day, you have to spend 3 days working your way back to square one. This ratio is even worse for someone who is elderly and had medical problems — something like 6 -12 days of recovery work for every day of downtime.  My mother has just spent two consecutive weekends, both four-day stays, in the hospital, doing nothing beyond getting up to go to the bathroom. And in the second stay, she didn’t even do that because they put in a catheter, fearing she might fall if she tried to get up.

The PT’s are working slowly to help her regain her strength and endurance, as well as balance and ability to do everyday things. They also help with the neuropathy the chemotherapy has produced in her legs and hands. And they told us we should not let her sleep for hours, but wake her up after short naps to do something active, however little that might be.

We are also noticing a shifting of mental ability — at times she’s totally clear and sharp. Other times, not so much. But today I think there was more sharpness than I’ve seen before. And it is likely that as the swelling of the brain from the blood-pressure spike decreases, and her fatigue lessens much of her confusion will ease. At least that is what we are hoping (and in my case, praying for).

Bad News

On Monday I took my mother in for her monthly treatment of maintenance-dose chemo-lite plus a bone-strengthening medication. We always see the doctor first and he had the results from the PET scan she’d had last week. (One which he’d ordered back in June, but which had been denied by the insurance company, thus necessitating filing an appeal before it was accepted). The results were not good. Her cancer is back and this time it’s widespread: spine, skull, clavicle, liver… other places I can’t recall. So he wanted to immediately begin a new regimen of treatment, but they didn’t have the drug he wanted to use.

Since her veins are objecting to being stuck as much as they have been, we decided to come back Tuesday when the medication would be available and do both infusions with one “stick.” The drip of the new drug was so slow (to prevent allergic reaction) it  took three hours. She’s also scheduled to have a portacath inserted before we go back next week for the doctor to check her white blood cell count. She seems to be handling it well. At least as well as can be expected. I was in a sort of shock for half the day on Monday, because while I expected the cancer would return, I didn’t think it would be quite this soon. Even though this is about the same length of time that passed the last time she had treatment and apparent remission and then a recurrence. Of course with the PET scan having been initially denied, we don’t know what the situation was when she ended treatment last summer, but she did enjoy a couple of months of feeling pretty good before things started to go downhill again.

This time we’ll go in every three weeks for the chemo. My biggest concern is her weight. She’s lost thirty pounds since this all began and she doesn’t have much more to lose, but it is extremely difficult to get her to eat when she’s not feeling well. It doesn’t help that she’s a vegetarian who doesn’t eat milk-products, because that makes it harder to slip in high protein/calorie mini meals — people keep suggesting a milkshake but she doesn’t drink milk. Or soy milk. And doesn’t like Rice milk. I’ve offered to come over and cook some meals for her and if she takes me up on it, that might help. We’ll just see how it goes.

So, to anyone who feels led, your prayers would be appreciated.

End of Cycle Six

Well, it turns out I did get home with a reasonable amount of time after my mother’s cancer treatments, but then I had to deal with… insurance issues. Like, “Once you’ve reached your out-of-pocket maximum, do you have to pay the copays for doctor’s visits?” I have called the health insurance company, pored over the insurance information and documentation, went online to look at evidence of coverage and am STILL not sure.

Originally the insurance agent told me that my mother would not have to pay anything, including copays once she reached the out-of-pocket limit. But then she got a bill for doctor’s visit copays after she’d reached her yearly cap (which happened after only one month of her chemotherapy regimen; it’s that expensive!). So I called the insurance company direct and was told that doctor’s copays are not applied toward the out-of-pocket limit and she would have to pay the bill and any subsequent copays. Okay.

So we went in today and told the receptionist that we were mistaken and my mother was supposed to pay the doctor visit copays even though she’d already reached the cap. The receptionist thought that was weird and suggested I talk to the Oncology center’s financial advisor. The financial advisor also thought that was weird; in fact she’d never heard of such a thing and asked me to bring in the EOB (Explanation of Benefits) for what she thought were the doctor visit copays my mother had been billed for. 

But the dates she gave us were after the ones on the bill…

I am utterly bemused by the lack of clarity in the language used in the Summary of Benefits. Under “Important information” it says:

$XYZ out-of-pocket limit.

There is no limit on cost sharing for the following services:

Medicare services:

  • Doctor office visits
  • Chiropractic Services
  • …etc…

So… From this I gather that “no limit on cost sharing” means that you must continue to share the cost without limits. Which means doctor visit copays do not apply to the oopl and you do indeed need to keep paying the doctor office copays…

Later on in the charts, they list items that are included in the out-of-pocket cap. “Doctor office visits” is not on the list but “physical exam” is. When you look at  “Physical exams” it says there is no copay for a routine exam, of which you may receive only one per year. Why list physical exams under what can be applied to the oopl if you don’t have to pay a copay for them? In “Physician Services,” they tell you all the rates of copays for various types of doctors.  But in many of the other categories, after they tell you the various copays they state, “you will pay these amounts until you reach your out-of-pocket limit.”

By which I deduce, again, that you must continue to pay doctor’s copays or they would have said “you will pay these amounts until you reach your out-of-pocket limit,” after the listings of the various doctor types of copays…

Are they being deliberately obtuse or is it just me?

On a brighter note, my mother is doing very well with her treatments. Today was the last full treatment and the end of the sixth cycle. She looks good, she’s feeling well, her pain is vastly reduced, and her appetite has returned. We now wait three weeks during which she’ll get a bone scan. Then we’ll go back for “maintenance” treatments with the chemo-lite drug that supposedly has no side effects… At least that’s his plan now. We won’t know for sure until the scan comes back and we see him again. But for now it looks like we might have a three-week break.

I say might because the one thing I’ve learned in all this is… you never know what a day might bring.

Activity

Well, today I took my mother to the Cancer Center and we received the results of the PET scan done on Friday. The Physician’s Assistant explained that there was “activity” in several spots: L-1, L-2, T-11 and 12, a couple of ribs. I asked what “activity” meant, but didn’t really get an answer, other than that it is different from “metastatic disease,” of which there was no sign in the last PET scan… but in this one there was “activity.”  So I asked what exactly was being active, but still didn’t get an answer, only that there were spots. One of them could be the compression fracture my mother had in December. Or … cancer, maybe? The PA didn’t say that, didn’t really say anything and went off to get the doctor.

A few minutes later, Dr. Schwartz arrived and said the tests looked good, but there were those spots of “activity”.  My mother asked what good was the test if it didn’t tell them anything. He said it was the best they had. The only other option was to cut her open and start doing biopsies. Did she want that?

No.

Anyway, bone cancer is notoriously hard to … distinguish? diagnose? handle? treat? cure?  I can’t recall exactly. Probably all of those. He said her tests were good enough he was sure the disease was not currently ravaging her body, but he wanted her to continue with her treatment for two more four-week cycles. That is, we go in on Monday, she gets her blood taken, meets with the doctor of PA, gets her chemo treatment, which when she gets both drugs involves a bag of anti-nausea medication, a bag of chemo drug #1, a bag of chemo drug #2 and a saline solution to flush every last bit of the [very expensive] chemo drug #2 out of the tubing and into her vein. In the first treatment of the cycle she also gets a bag of bone-strengthening medication. All this takes anywhere from an hour to three hours, during which time I sometimes leave and come back when she’s done. After that we go in Tues-Thursday for leukocyte-stimulating shots. After three weeks of that she gets the fourth week off, then we start again.  When the two cycles are done, she’ll have another test. I don’t know if it’ll be another PET or an MRI.

I think we were both a bit surprised at the developments today, even though now, as I think back, I do recall Dr. Schwartz saying that Mother would have four cycles of treatment and then they’d do a test to see where she was. He didn’t actually say she’d do four cycles and that would be the end. I guess I thought with all the chemo it didn’t seem likely the cancer would be growing again. I’d have thought she’d have to stop treatment for a while and then it would start again. Apparently not — though I have to remind myself that no one has actually come out and said that the “spots” and “activity” are cancer.

So. We go on. One day at a time.


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