"Not such a grim Christmas after all..." Topic

Things were not looking good, but they could be worse. At least my dear bride of thirty-six years is at home today, and with me.

You may recall that two years ago, she broke her ankle fairly spectacularly, and we had a hard time finding an orthopedic surgeon who would work on her (because of her diabetes, the local one said there was no hope of its healing). But we hunted down a good one, who pieced her ankle together, and it healed just fine and on time.

And you may remember that a year ago October, she managed to fall and break the femur on the same leg. The local hospital couldn't handle it, the Catholic hospital and two other hospitals thirty-plus miles away couldn't either, and she wound up in the Adventist hospital in east Los Angeles. Again, a good surgeon put her back together with plates and screws, and she healed right on schedule.

But in the process of healing both times, she was suffering from significant edema (swelling due to excess fluids) in the lower extremities. This led to a diagnosis of renal failure, and she started to see a nephrologist. Her kidney function was degraded, although not enough for dialysis; and with new prescriptions, the process was slowed, and early this year started to reverse a bit.

[I'm going to break this up so it's not all one long post. Hang on a bit.]

But then our health insurance ran out. We had COBRA continuation coverage from her last employer, and that was extended, but in April this year, it ran out.

Not long after that, the missus experienced significant weight loss: sixty pounds, much of that from eth edema in her legs practically disappearing. Apparently her kidneys started dumping proteins into the body, and started eliminating water better, and the water and the weight went away over the course of two months.

Unfortunately, with the weight gone, she could now feel a lump in her left breast, in a location where years ago, a mammogram had turned up calcifications, but no tumors. And now we had no insurance. Great.

We started looking around. This was in July. Women's Breast Health Awareness Month would be coming up in October, but the local hospital had no funds (or the state of California had no funds, I'm not sure) to fund screening clinics. And it was best not to wait.

However, the Catholic hospital in Apple Valley said come on down to their mobile screening van, which conducts a women's health program at carious locations each week. She received a clinical exam from an LPN, as well as a pap smear, and that confirmed the lump. The pap smear was clear. Based on the exam, the hospital had her go in for a mammogram (for which the radiologist waived the fees and the hospital waived the other costs), and based on that, had her come in for a stereotactic biopsy: in that, ultrasound is used to guide the biopsy sampling needle to the correct spot. Again, the hospital and doctor waived the costs, thankfully.

The biopsy came back showing that the lumps (there were two) were malignant tumors. Bad news. One was contained within a breast duct, and the other had grown outside, which increased the chances of spreading through the body. More bad news.

But the hospital enrolled her in a program I had never heard of before. The Centers for Disease Control fund a screening program to detect breast and cervical cancer in uninsured women. It leaves the implementation and subsequent treatment to the states, and California does that by enrolling the woman in Medi-Cal, which is the state's program for using Medicaid funding. At least here, once you're in the program, your health care is completely covered (with normal Medicaid restrictions) for as long as you have cancer.

So that was a tremendous relief. No matter what else might happen down the road, it wasn't going to bankrupt us--which with neither of us able to get re-employed, is rather significant. Opponents of "socialized medicine" can go do you-know-what: to be without health care with breast cancer is unthinkable.

So the missus was then scheduled with a surgeon who would perform a mastectomy, all other things being good. He scheduled her for a full body bone scan (here at our local hospital) and a PET-CT scan at an imaging center back down in Victorville. The PET-CT scan required approval, so it took a couple of weeks. It's relatively new, compared to older CT scan technology, and apparently expensive as all get-out; the imaging company absorbed the cost of medical transporattion 9a van) down there. And that was a good thing; our old van isn't really able to drive any distance now.

The surgeon had the two sets of scan results back a week ag this past Wednesday. We went down, and he informed the missus that the cancer had spread throughout her bones ind into her liver. He was brutal: no compassion at all. he just said, "Go find an oncologist." His nurse explained later that he is lovely with surgery patients; but if it turns out to be something beyond what he can "fix", he detaches himself emotionally. Great, but it's rather hard on the patient. The missus was in shock, understandably.

Fortunately, the surgeon's staff was much more compassionate, and set up an appointment for that same afternoon with an oncologist just a short ways away. We went over, and Nancy was in quite bad pain by now (which I will explain in a bit), and this oncologist was no better at communication. She just read down the scan report aloud, listing all the cancer locations in the bones (virtually all the vertebrae in the spine, throughout the pelvis, in the ribs, the arm and leg bones, even the cranium), while Nancy lay on the exam table, crying and shaking. I put a stop to that, asking the doctor what she thought she was doing.

[Edit: I forgot to mention: the doctor said she could not do chemotherapy, as that would destroy Nancy's kidneys and kick her straight into dialysis.]

The oncologist did prescribe pain meds, nausea meds, and a hormone suppressant (about which we knew nothing, and which she didn't explain) and her staff set up an appointment for this past Monday with a radiation oncologist. The only good news was that the program also covers medical transportation, and we lined up a van to bring ius down to that office. The oncologist also prescribed a wheelchair at my request, and the process of obtaining that began.

Sigh…

On Monday, the van picked us up and took us to Doctor Alqaisi's. I'll use his name, because he deserves to be known. The Mexican surgeon and the Indian oncologist probably deserve to be shamed, but I'll withold their names.

Dr. Alqaisi received his medical degree in Baghdad, came to the US in 1980, did his residency in San Francisco, and then built a highly sophisticated and well-regarded cancer and pain center which he has run for many years. His focused radiation equipment is state-of-the-art, and thank heavens, he has the "bedside manner' you would want from any physician.

He reviewed all the labs, scans, reports and notes taken so far. He sat down with me, pulled up the scans side by side on the monitor, and showed me, slice by slice, head to toe, where the cancer has permeated. It's not good.

However, he was upbeat. He explained to us both why the oncologist had prescribed a hormone suppressant drug. One form of cancer that typically originates in the breast literally feeds on estrogen. If you reduce the estrogen production, the cancer starves and goes away. This could work.

Dr. Alqaisi planned to use radiation to focus on the spine and reduce her pain (which would in turn reduce her nausea). Both had been constant for the past month, and had worsened dramatically the past two weeks. He didn't think this palliative therapy would necessarily reduce the cancer by itself, but might halt its growth in the area he focused it, giving the hormone suppressant a chance to work. And most importantly for nancy's state of mind, it would reduce the pain.

It turns out that a tumor in one of the vertebrae has been pressing directly on the spinal cord, and this has been causing intense pain, and probably that was what was in turn causing the nausea, as a reaction to pain. When nancy first complained of the back pain, I tried working on it with massage, but her back was too sensitive to touch, and I hadn't been able to figure out what was going on. The scans showed why.

Anyway, Dr. Alqaisi set up a program of fifteen days of radiation therapy, and we went down (again in the authorized van, thankfully) for the first session the next day--Tuesday.

Now it gets grim.

We got home from the first radiation therapy session in the late afternoon Tuesday, and found two unwelcome things. First, thanks to the torrential Southern California rains this week (even in the desert), the roof leaked for the first time in 21 years. That's not too bad in the end: it only dripped in about a quart, there are six or seven stains on the ceiling, and I have a preliminary claim in to USAA…

At 5 P.M., the oncologist called. She had gotten back the lab results from last Wednesday, and directed Nancy to go directly to the hospital emergency room for "urgent dialysis". Well, obviously she didn't know Barstow, because the hospital here doesn't *do* dialysis! It's her nephrologist that runs dialysis centers both here and in Victorville. So I had her office FAX me the lab results, and called the nephrologist. He called the oncologist, then called me back to say to take her to the ER, get her admitted, and he'd see her the next morning (Wednesday is one of the days he's in Barstow, and he does his rounds at the hospital). Nancy's calcium and potassium levers were indeed too high, as were a couple of the indicators of renal failure. She'd basically kicked over into the "must dialyze" category.

So we went to the ER, and they got her in a bed in the ER without delay (with other people waiting in the hallway). Once they got her IV and drip set up (she was quite dehydrated from the nausea) and the right meds going in, it was just a matter of waiting until she was stable enough to go to a room. We got there about 7 PM. She was admitted and went upstairs about 1 AM. there were other things going on.

Now since last Wednesday, I had been feeling like Nancy was not herself at all. Shock from the resuults, pain from the tumor in the spine, and truly constant nausea had really affected her cognition. She couldn;t focus to answer questions. Shw as substututing wrong words for what she meant to say. She was of course extremely depressed. The brilliant, capable woman I've lived with all these years had become very different.

But she perked up a good bit once she was in the ER, and we just sat (and lay) back and watched the show.

More to follow…

When she broke her femur, the local ER was a zoo. They were dealing with at least three overdose cases, while trying to find a hospital to send her to. Dr. Abbas (yep, he ain't from here either, but he's good), the ER doc, worked very hard to get her admitted to St. Mary's in Apple Valley that time; although in the end, they didn't keep her, either. (I forgive them for that occasion, for all they've done for her in waiving fees and getting her enrolled this time!)

Dr. Abbas saw Nancy initially Tuesday night, too, and gave the orders to get her going to flush out the minerals. But then the hospitalist came down to review the case, since he would be caring for her once she was admitted. Imagine a young Osama bin Laden, right down to the long, scraggly black beard and black skullcap. But dang, he is a magnificent doctor. Tuesday night, he was on his eighth straight 24-hour shift (while the two other hospitalists were on vacation) and he won't be off until Monday, so thirteen days straight…

Dr. Anwar sat down with us to explain basically what had happened. Her nausea had caused her to become dehydrated. Her calcium and potassium were dangerously high, because not enough was getting flushed out. And her kidney function had dropped. He explained thoroughly how they would be treating her, and why they were doing things a particular way. Great bedside manner.

The nurses were great, too. The local hospital has recently lost a number of nurses, especially in the ER, and they were short-handed. One was on her first day there as a "travelling" or "pool" nurse. Another had come in for an interview that day, and had been asked if he could work a shift that night! So he was there in OR scrubs and his dress shoes. I asked him, "How long have you been nursing?" He said, "Twenty-one years." I asked, "In *those* shoes?" He laughed and explained. Turned out he'd been to medical school in the Caribbean (his family is from East Bengal), but he had had to drop out after three years when his father died; but he went on and was educated as a nurse in the US. Very impressive fellow: born into a Brahmin family on one side and Jewish on the other (family conflict!), converted by Baptist missionaries, now a Messianic Jew. We had a fascinating talk once things slowed down.

Both of them were great, as were the "regular" ER nurses. One of the "old-timers" had only been there 8-9 months. But they all worked together well. The 93-year-old guy in the next bed, and they all piled on and resuscitated him: CPR for almost ten minutes while they intubated him, but they got his pulse back and BP up, and finally stabilized. The guy in the next bed in the other direction was a weenie; he had a kidney stone that only turned out to be 2.5mm, and he was screaming. I wanted to tell him to shut up, drink lots, and walk the floor like I've always done. But they took care of him, and eventually released him. But the staff was busy.

We got Nancy up to a room about 1 AM, as I said. The floor nurse took her intake (same fifty or so question for the fourth or fifth time), but she paid attention. When Nancy said she had just had radiation treatment that afternoon, the nurse decided that was sufficient to consider her immune-compromised, and gave orders for her to have a room by herself and for it to be treated as reverse isolation: all the staff had to don gown, mask, and gloves to come in--although I didn't have to.

I went home to bed at 2:40 AM. More to follow.

You write that you're home and together. Bless you both, Allen.

Ah, man, I feel for you and Nancy.

Bring her some of her favorite movies/books/projects.

Nancy's nephrologist came to see her Wednesday, as he had promised, and what he told her came as a bit of a shock. He said that although her kidneys had continued to fail, he would recommend against dialysis. With the cancer having spread to the bone, the prognosis was not good, and dialysis would just be uncomfortable and potentially risky, becaue of infection. He suggested looking into home hospice care. Well, that didn't sound good.

As it happens, earlier in the morning I'd realized that we had never contacted the funeral home here, and if worse should come to worst, I probably ought to be better prepared than I am now--and the reverse: if something should happen to me, Nancy needs the information available without hassle.

So I called both life insurance companies with which we each have policies, and asked what they would need in case of a death. I called the funeral home and talked with a wonderful lady about what would be needed for our very simple requirements--and she had asked, having been through this herself with her husband who died of cancer, if we had looked into the home hospice system. So I also called and made initial contact with the hospice program's intake nurse--just in case. Again, thankfully, if that is needed, the costs are all covered by the program Nancy's in.

Our next door neighbor, whose daughter is going throigh daily radiation too, had suggested last week that we contact the American Cancer Society for support (they can help with gas costs) and City of Hope in LA. We did both. City of Hope has her information if we need to go there, but if she can be treated locally, it's a lot less hassle than going to LA.

But we're not writing her off just yet! Dr. Alqaisi had been positive about the potential for hormone suppression and radiation treatment together. So we'll call next week and arrange a "meeting of the minds" and establish some concurrence between the first oncologist, Dr. Alqaisi, and the nephrologist--who is a very good and kind doctor, too. I am sure that from his perspective, even though he makes his money providing dialysis services, he does not want to put her through something inconvenient, uncomfortable, and possibly an increased risk if there is no real benefit. We both appreciate and understand that, but we want to get a collective opinion, and let Nancy make the decisions.

Anyway, once she was in a room, the nurses took good care of her. The nephrologist had visited Wednesday, and Dr. Anwar saw her twice a day. Her levels started to go down. Thursday night, she finally got some relief from the constipation which had been plaguing her along with the pain and nausea--but of course, that kept her up all night! So she was pretty tired and cranky yesterday morning. But then she started feeling better, and her appetite had returned as well.

She was originally going to be discharged in the late morning yesterday (Friday), so I went over to pick her up. The wheelchair had been approved and delivered to her room (!) by the medical supply company in Corona the night before. But then her blood pressure was running high (probably lack of sleep and fatigue), so they kept her over lunch, and kept her, and kept her, as the BP sloooowly went down. We took a nap! Finally got out of there a little before 5 PM, went over to Von's to pick up her discharge prescriptions (and a nice leg of lamb for dinner tonight!), and came home. Her seven kitties were very relieved to see her.

Nancy slept well (very happy to be in her own bed) last night. A prescription for a stronger opioid that Dr. Alqaisi had written Monday had finally been approved (the first oncologist had prescribed acetominophen with codeine, but that wasn't enough; and we had some Vicodin left over from breaking her leg, and *that* wasn't enough), and we picked that up last night too. So she's feeling less pain, is not nauseous, the rest of the GI system is functioning much better, and she's in a much better frame of mind.

So now we get to figure out what happens next. We may have a short time left together. It may be longer. I may check out any time. Or as the Persian tale goes, the horse may learn to sing. Today, we just don't know. But today, it's Christmas, we're together, and she's feeling fairly good, and much less depressed--even though the news hasn't been good, and has all hit pretty much all at once.

On towards 2011. That's all for now. Well, apart from trying to figure out some sort of regular income and keep the bank from foreclosing!

Allen

"Apparently her kidneys started dumping proteins into the body…" Meant to say "stopped", not "started". There are some other typos above, but you'll figure them out…

Allen

As I just said to kyoteblue, I'm going to go read to her for a while now: she loves that. One of Bruce Alexander's "Sir John Fielding" 18th century mysteries. Back in a while, although by then it'll be time to put the roast in the oven and whip up some rolls.

Allen

God bless you both, Allen.
Your many friends here are wishing you the best.

Take care Allen; all the best to you and Nancy – I hope things work out, and that you're having a great Christmas regardless of the strife.

Dom.

My best wishes for you and Nancy as well.

Good lord, Allen, what a load for each of you to bear !

Lori is an oncology nurse and had positive things to say
about the hormone suppressant (a treatment with which
she is familiar from years of service with the Lineberger
Treatment Center at the University of N. Carolina Medical
Center).

I really wish there was sommat we could do other than pray
but we'll do certainly do that.

Heartfelt best wishes for 2011.

God bless you and Nancy, Allen. Remember, if you ever need to chat with one of us one-on-one, just PM us.

We're ALL with you two.

Blessings to you both, Allen. Sounds like you both have a tough row to hoe, but at least you're together now</o>. I hope the treatment goes well and you have a much better 2011.

A very nice thing happened just before dinner. I was just putting the finishing touches on it--rolled boned leg of lamb, mashed sweet potatoes au gratin, dressing, green peas, and Nancy's cranberry-orange relish--when the doorbell rang. It was the neighbor lady and her daughter with a set of platefuls: sliced turkey and ham, vegetables, pumpkin bread. They were worried that we wouldn't feel much like cooking.

Now that's nice enough on its own, but it was especially thoughtful because of this: the daughter has been receiving daily radiation treatments after removing a tumor in her jaw and salivary glands that had spread to her brain. She's barely out of being a teenager, and was pregnant when it was diagnosed, and she had insisted on waiting until she had the baby before allowing the surgery. That's why it had spread to the brain, but the surgeons did get it all. (She's gorgeous, by the way, and you'd never think she was a "cancer patient".)

Her mother's parents have been ill: the grandfather has lung cancer, and the grandmother had broken *both* arms--and then just last night, the grandparents had stopped in their car at the intersection just down the street, when someone plowed into them from behind. They were shaken up, but not further hurt all that much. Oh, and the baby requires special care and monitoring for a condition, although he will grow out of it.

Yet that family that had so much to deal with on their own, including the crash just last night, thought of us and took the time to bring us dinner. It'll all warm up fine for tomorrow. Very heart-warming. We are very thankful. I'm starting to get teary!

Allen

So am I Allen. Don't you too worry too much. You've got each other and I truly believe God is looking out for you both. Good luck, Godspeed and God Bless you sir. My prayers are with you both.

Allen, I wish you lots of strength, and good luck for the time to come.

You are both in my thoughts.

Allen,

My thoughts and prayers are with you both.

Kevin

Damn, that's a rough year.
Hope things get better for the two of you.
-Kle.

Fingers crossed on the hormone treatment. You are both in our prayers, Allen.

-Michael

Thank you, Michael; its very good to see you! And thank you, everyone, who has posted or sent PMs with kind words of support. I've read them to Nancy, and we are thankful for your thoughts.

Allen

Dang Allen, I'm glad to hear the good parts of this. You and Nancy will be in my prayers for the not so good parts.

We're both very sorry to hear about Nancy's health, Allen, and hope with all our hearts that she gets the best possible treatment and the best possible results from it.

You both deserve so much better.

Our prayers and very best wishes to you both.

Hope you're both enjoying the holiday season – please keep sharing the details of your meals with us, it makes us wish we were within dropping-in distance!

Sue & Lesley.

We had leftover lamb with roasted red and green Bell peppers in pitas for lunch, topped with raita (homemade yogurt, cucumber, and cumin)!

Allen

Best wishes to you both, Allen!

Best wishes and you are both in our prayers

ML