Tag Archives: cancer

Now: A Reprieve from Distraction?

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Christmas Cactus blooms

Well, I had another week/weekend filled with distraction, but the Christmas stuff is almost put away, and the colonoscopy went well. There is no cancer there.  My oncologist had recommended I get checked sooner than the usual 10 years on account of the endometrial cancer.

And this time, after the screening, my gastroenterologist recommended a recheck in 5 to 7 years, which is actually the period of time he considers the longest anyone should wait between screenings, even if Medicare doesn’t agree…

Anyway, I have an eye appointment next week, as well as a trip across town to pick up a sunglasses clip that was inadvertently not included with my new glasses when I went to get them… and then maybe… just maybe… I’ll be appointment-free for a while and able to get back to some semblance of regular work on this book.

So far it seems to have been a veritable magnet for distraction.

I know. I’ve said that before. But surely at some point I’ll be left alone to get the work done, right? Right?

Please, Lord???

The Flesh is Perverse

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Our human body is a marvel, to be sure, but it’s also perverse, given to auto immune disorders wherein it attacks itself with its own antibodies intended to defend against outside invaders — like Lupus, rheumatoid arthritis, CREST syndrome….

Or, an even better example, cancer, where some region of cells will suddenly start growing all out-of-bounds and out of whack, distorting the organ or tissue where they begin until it can no longer function properly.

Recently an even more egregious aspect of this perversity has emerged in the results reported in a newly released study on the effectiveness of chemotherapy. You probably know that there are various kinds of chemo drugs — powerful toxins — developed and administered to cancer patients with the intent that these toxins will target the cancer cells and kill them. And so they do.

The first time around.

But often after the first round has been successful and the cancer has been eradicated, at some point it will return in the same or a new location. In the case of my mother, the first cancer cells developed in her breast. Surgery, chemo and radiation treatments resulted in her being pronounced “cancer free” some eight months after the cancer was first discovered. But only six months later, it returned, this time in her thigh bone.

This is so common an occurance that at a routine post-cancer visit, the minute she mentioned having pain there — after we’d spent three months going to various other doctors for answers — her oncologist sat up straight and took strong notice. He ordered an immediate CAT scan and sure enough, the cancer was back.

Scientists have long sought to understand why, especially since cancer cells outside the body are so easily killed. Apparently they have finally discovered some answers.

Turns out that while the initial round of toxins are killing the tumors, they are also affecting the healthy cells that surround the tumor, changing their DNA, and provoking them into eventually releasing “a protein that sustains tumour growth and resistance to further treatment.” This protein, called WNT16B, “interacts with nearby tumor cells, [causing] them to grow, invade, and importantly, resist subsequent therapy.”

“‘The increase in WNT16B was completely unexpected,” study co-author Peter Nelson of the Fred Hutchinson Cancer Research Center in Seattle told AFP.”

Indeed, who would expect our own bodies, already killing themselves with the mad growth of cancer cells, to use the intended cure to actually help the mutated cells survive and prosper? Typical of the flesh, though, and the way so many of us, when in its grip, attack our own lives, tormenting ourselves with self-debilitating thoughts, or self-destructive behaviors.

I do not believe this is coincidence, but rather a vivid illustration of the death and perversity that lives in our bodies — the outer man, which is decaying even now — and yet another reason to give thanks for the new life we have received through faith in Christ, that inner man which has the potential of being renewed day by day, regardless of what’s happening to our flesh.

Short Update

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Hi everyone!  Thanks for your prayers and well wishes. The surgery went “exactly as it was supposed to go” (except faster) and I came home Saturday. No sign of cancer, only the pre-cancer stuff they’d already found.  We’re still waiting for the full pathology report, but I’ll take good news in whatever increments the Lord decides to present it. 

I’ll try to write a more detailed update tomorrow. Somehow the Lord took what most would consider a “dire” event and made it into a fun weekend…

Catching Up

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So, where have I been the last seven-plus days? Well, after the last post about my trip to the zoo, I actually got down to business and worked on Sky for three hours every day for the next three days. Then came Saturday, which was filled with many things that did not concern writing. Sunday was our first of the month pot luck at church and the transfer of a telescope from my carport to my car to the car of the friend who will be taking it home to keep and enjoy.  I came home and crashed, exhausted.

Monday I went to the hospital to do the check-in and pre testing for my surgery, set for this Friday. That took a couple of hours. No writing on that day, either. Tuesday I focused on catching up on housework and preparing for visitors. Today, Wednesday I continued the catch up and preparations, plus I have a standing lunch date with friends that lasts the afternoon. 

Tomorrow I might actually be able to get around to writing since I should be home for most of the day drinking my clear liquids and eating my jello in preparation for the big day… Friday. Of course, no writing will occur Friday, nor for the rest of the weekend since my son and his family will be arriving tomorrow night to help out, provide moral support etc. Can’t wait to see them!

And now, seeing as the news is almost over and my eyes keep wanting to shut, I’d better sign off. I’ll be back in a few days with my report of whether all this went as smoothly as it was supposed to.

Yet More Reassurance

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 I finally got back to working on The Other Side of the Sky today!  For two hours. First time in three months. And even the few days I spent three months ago were themselves the first time in three and a half months, so I think it’s fair to say it’s been six months since I’ve really worked on the book.

But that’s not what I meant by more reassurance. No this was reassurance about my mother’s salvation  I recounted here the story of how I had one last chance to encourage my mother to believe in Christ the night before she died, and how she seemed to respond, seemed to be saying yes but not in any clear and definitive way. I related how after I’d left her and walked down the long, deserted main hall in the hospital a woman came toward me carrying three white lilies which I took to be God’s confirmation that my mother had indeed believed and received eternal life.

There was more of that sort of confirmation afterward. Like me picking up the birthday card my mother had given me in March to put it away (I had it on display) and, in turning it over, discovered that on the back was printed “Lilies of the Valley.” And finding out that her yet-to-be-born great-granddaughter was to be named Lily, a decision my son and his wife had arrived at well before the incident of the white lilies in the hall. But there was another weirder, but even stronger confirmation that I discovered some time after the actual events when I was rereading the entry I’d written in my journal of those last moments on the day she died.  Suddenly the names of all her caregivers who were around her that day seemed to leap off the page at me.  Dr. Bravo, former nurse Alva (the name means, in Hebrew, “brightness, exalted one“, Mother’s actual nurse of the day, Victoria, the technician Mary, all came to say goodbye to me. And when we arrived at Peppi’s House, the Hospice facility, Mother was delivered over to the care of a nurse named… Christy.  Christ.

Gave me chills to see all that. Still does. But there was one name I never looked up, that of Dr. Clements who had really been a blessing to me. He was the pulmonary specialist who drained the fluid from Mother’s lungs so she could breathe better and be a little more comfortable. He was the one I could talk to, and did. He always made me feel better, even when things were dire. He was clear, he made it all understandable, he worked with dying patients all the time. He was the one who told me on Saturday that Mother probably wouldn’t last twenty-four hours, the one who wrote the order for Hospice when the brilliant but flaky gastroenterologist forgot.  He was the one who told me to call my sister and tell her to come ASAP.

Lately I’ve been wondering… what does his name mean?  It seems like a plain, vanilla English name. Probably has no meaning, right? Certainly not anything significant like the others.  The question kept niggling at me so last night I finally looked it up.

It means “merciful.”

That gave me chills, too.

Wednesday: It’s Never What It Seems

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For one thing, my Mother was not discharged today, and we did not go to the oncologist’s office. I did manage to talk to him on the phone, however.  Turns out when they did the ultrasound for the lung tap, the lung doctor asked the technicians to look at the liver for cancer spots and they had found them, larger than they’d been in January, so they know it’s reactivated.  Dr. Schwartz also said the edema in the legs is the result of the liver malfunctioning, but that the disease can be treated.

Meanwhile the hospitalist ordered an official ultrasound of the liver. Those results will not come until tomorrow. But we did get back the results of the test of the fluid that was taken from Mother’s lungs: no tumor cells. Which means there’s no cancer in the lung.  Hooray! Dr. Clements said there can be tiny holes in the diaphragm allowing fluid from the abdomen to enter the chest cavity, and in fact, he thought it did seem like there might be a fair amount of fluid gathering in her abdomen. Turns out they can extract that pretty much like the lung fluid was. In fact, if the ultrasound shows there is in fact fluid there he’ll order what they call a paracentresis — basically the same thing he did with the lung done to the abdomen. It’s possible that could significantly reduce the swelling of her legs which would be awesome. They don’t hurt her, but with the skin splitting and the fluid and blood dribbling everywhere they would be very difficult to deal with at home like that.

It’s probably unrealistic to expect results that dramatic, but still it would be nice to do something to lessen the edema. The primary means of treatment, though, is to go after the source of the problem which is the liver. Right now we’re waiting to see if mother can get back to eating and drinking and sitting up, able to move on her own again. Turns out that the fluid in the abdomen can cause the stomach to feel full and discourage eating, contribute to an acid reflux sort of effect and cause the patient to swallow a lot of air that will in turn be burped up.  So it looks like we might have an explanation for all the burping and so-called indigestion… We’ll know more later. But who woulda thought?

It is sooo cool to see God’s hand in all this, to see the way He’s got things orchestrated. In addition to all that, I got up this morning and went searching for my Thieme booklet, The Faith Rest Life, which  think I first read 35 years ago. It’s amazing to reread it and see things I never saw before, because my perspective has changed. But the coolest thing was that it really is true that I’m to do nothing. I keep fighting that. But if you’re going to give a problem over to God to solve, why would you keep trying to solve it yourself?

There’s more — he talked a lot about patience and how hard it is for us to wait on the Lord. And of course there has been a LOT of waiting these last few days. And the more I have to wait not knowing, the harder it is to stay relaxed. I even was griping to one of my friends about it… what’s the point of all this sitting staring at walls, waiting? I don’t understand. Well, there it was in the Faith Rest book — a very specific answer. And then tonight, live back in Massachusetts, Pastor McLaughlin taught  on … Patience!

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance.” 

I love it.

A New Dawn, A New Day…

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The next day, Tuesday, I awoke filled with gloom and doom, and trying to fight it off. I’d recently received emails from other royal family members going through trial and talking about how God had shown Himself in big and small ways. I sure hadn’t seen any of that the day before. It was just chaos, confusion, lots of dull, uncomfortable waiting and gloom and doom.

Well, every time I whine about such things, God makes me feel like the stupid sheep that I am. About 10am I arrived at the hospital, walked up to the front  desk to find out where they’d put my mother last night,  telling Him I’d love it if she could be back in Neurology with the large private room, the quiet floor, the excellent nurses, the big window… and she was.

As I walked down the long main hall toward her wing, I passed Heather, who had been her nurse for two days the last time she was there. I thought Heather had been an awesome nurse. “Boy, Lord, it would be cool if Heather could be Mother’s nurse this time.”  And of course… she was.

I had been trusting the Lord for the timing regarding meeting up with the doctors at the hospital — always a challenge because no one can ever tell you when they’ll come by. As I walked onto Mother’s floor and to the nurse’s station, there was her hospital doctor (who’d replaced the ER doc as soon as she was admitted to the hospital)– he was also the doctor she’d had the last time she’d been there. He was on the phone, saying as he looked at me, “Oh, here she comes now.”

So we talked, he told me all of what was going on, how he was treating Mother as if she had pneumonia until it was proven otherwise and how she’d agreed to have the lung fluid drained after all. They’d already done the ultrasound to pinpoint where the needle should be inserted and were just waiting for me to get there to do the procedure because she had insisted they wait.

So I went to her room to find her getting a bath. She’d even eaten breakfast. Soon the pulmonary doc came in. He was GREAT. He explained that they would drain out the fluid to help her breathe more easily, to maybe ease the pain in her back, to see how long it would take the lung to fill back up,  and yes, to test for tumor cells and bacteria, but this last was not the main reason for the procedure. Moreover, when they put the mark on her back for where the needle was to be inserted (based on the ultrasound) she said that was exactly the spot where her back was hurting.

The needle was not huge, and wasn’t even in there for very long, because he inserted a very soft and flexible catheter attached to a vacuum tube to actually drain the fluid. She was awake and seated in the room, with only some Novocaine to deaden the skin where the needle would enter.

The procedure went off without a hitch and was virtually painless. He took out almost 2 liters of fluid. It wasn’t anything like the ER doc had said it would be; not only was the needle not huge, but it wasn’t to be stuck into the lung at all, but into the pooling of fluid, and furthermore,  in the 19 years he’d been doing this procedure he had never once  collapsed anyone’s lung.

In addition to all that, it turns out he knew my mother’s oncologist, even specifically chose him to work with on certain procedures, and had only good things to say about him. In fact, the pulmonary doc’s wife had had breast cancer and he said he wished Mother’s oncologist had been her doctor instead of whoever it was his wife had had.

Mother was feeling better. No more morphine, just vicodin. I got to eat at O’Naturals (their “fast food naturally” cafe which I love), and there were times with some of the various personnel who came into the room where we all were just laughing our heads off over some joke or funny thing. When I left tonight, she was watching her flat screen TV with the captions turned on — and she could apparently read them.

So I can no longer say the Lord has not shown Himself, because His hand has been all over the place. LOL!

There were down sides, of course  — the pain remained to some degree after the tap, so the lung doctor thinks it’s probably a tumor. Also, the ultrasound showed the liver is enlarged (in addition to having the terrible numbers that the blood tests showed yesterday), and it is just under the lung from which he drew the fluid. So a tumor there might account for the pain as well. After he talked to the oncologist, the latter left a message on my cell (as I was walking through the dead zone of the main hall) regarding their talk —  that the cancer had returned and I need to get Mother into his office ASAP for a change of treatment. Since supposedly she’s going to be discharged tomorrow (probably early afternoon) we have an appointment for 3:30 with him.

Also on the down side: the skin on her swollen legs has started tearing and weeping blood and fluid, so I’m not sure how we’re going to deal with that. But that’s tomorrow’s problem.

Gloom and Doom in the ER

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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…

Not Giving Up

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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

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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.