The Medical Info

Thought I’d use today’s post (which was supposed to be Friday, June 6, but is being posted on Sunday, June 8) for a fuller description of Gideon’s cancer, so if you’re not all that interested feel free to skip this.  He’s on his second full day at Spalding (as of Friday), and they’re working him hard.  I’ll leave in an hour or so to spend later afternoon and most of the evening with him, along with Jim.  His wonderful, wonderful grandparents will probably be there too.  People have been so great about visiting.  The look on the aide’s face one evening when she peered in the door and saw six of us sitting around Gideon’s bed was just priceless.  Visiting once is great, and we appreciate so much those who have done that.  Visiting regularly is even greater.  Thank you, one and all.So Gideon’s lymphoma is non-Hodgkin anaplastic large T cell, Alk 1 positive, CD 30 but no CD 20.  I’ll translate that a little bit, but first will say that I had no idea what lymphoma actually was until this tree fell across our path.  I hate to say it, but in my former ignorance I thought of it as something not all that serious, when it’s actually a cancer of the blood, in the same horrible family as leukemia.  Whereas leukemia affects the leukocytes, or white blood cells, lymphoma affects the lymphocytes, which are produced by the lymph glands.  Gideon’s case is Stage IV, meaning that the tumors have migrated outside of the lymph nodes themselves.  I wished I hadn’t asked about his stage after I was given that information.  But it’s confined to the bone and hasn’t spread to any organs.  Gideon thought at first when he was told that he had tumors in several places on his spine that it was all over for him, as he interpreted that to mean that the cancer had metastasized.  As it is, though, his prognosis is good.  The “Alk 1 positive” refers to a certain protein on the surface of the tumor which is very responsive to one of the new chemotherapy drugs, so Gideon is going to have the standard CHOP chemo protocol, but will probably have the O drug (which is very toxic and has high side effects) replaced with this new one.  That’s the plan, anyway.  Apparently this type of lymphoma is very rare, with only about 5% of non-Hodgkin lymphoma and 1% of lymphoma overall.  The “Alk 1 negative” form is much more lethal, with only a 15-45% recovery rate, while the positive form is 60-80%.  That’s not 100%, of course, but we’re thankful to have the success percentage that high.  It’s very strange:  in our small church there have now been three cases of lymphoma, including Gideon’s, in the past five years.  Plus, my nephew Cody’s wife, Katie, had a bout with it in 2009-2010.  One man in our church, a husband and father of two, died.  The other case, a young man about Gideon’s age at the time, had to have a bone marrow transplant, spent weeks living in a special apartment with only his parents allowed to be around him, and is now doing fine.  Katie is doing great and just had a baby in February.  (They named him Jaxon.  Isn’t that just the cutest name?  I call him Jaxon the Saxon.)   Gideon has four more radiation treatments to his upper back area and six more in the lower back, with each area being treated once a day during weekdays.  That puts him at Thursday, June 12, for his last upper treatment and Monday, June 16, for the lower back  At that point they’ll do an MRI to see how much the tumors have shrunk and how well the vertebrae are healing, and I assume that they’ll decide at that point when they’ll start chemo.  Jim meticulously recorded that Gideon will have six chemo treatments at three-week intervals, which takes us into late October if they start it right away.  It’s going to be a long slog.

Well, I need to finish this and get to the hospital to hear how many rounds of the hallways Gideon did today and how many stairs he climbed.  They’re very interested in how many stairs we have in our house, and the answer is:  a lot.  But we’ll manage.

A Cloud No Bigger than a Man’s Hand

Elijah prophesied to Ahab, the king of Israel, that there would be a drought until such time as Elijah prayed for it to end.  The drought lasted for three years, and then God told Elijah that rain was going to come.  The prophet climbed to the top of Mount Carmel and prayed.  Seven times he commanded his servant to go and look toward the sea, and six times the servant came back saying that there was nothing there.  The seventh time he said, “There is a cloud no bigger than a man’s hand rising from the sea” (I Kings 18:44, my paraphrase).  Elijah knew immediately that this was the sign he’d been looking for, and soon a heavy rain indeed started falling.  I’ve used that expression “no bigger than a man’s hand” a number of times myself, with the idea of something big that has a small beginning.

Our recent cloud started on March 17, 2014, when our 19-year-old son, Gideon, said, “My back really hurts.”  He’s a big husky guy who does Tae Kwon Do, so we figured that he’d pulled or twisted a muscle and he’d feel better soon.  But he didn’t.  When he felt so bad that he stayed home from his college classes for the day, a most unusual action for him, I took him in to our primary care doctor, a really great guy who took a chest x-ray and tried to figure out what was going on.  The x-ray was normal, and the assumption was that the pain was some kind of weird muscle spasm.  As a secondary matter Gideon mentioned that he’d noticed a lump in his groin.  “That’s a hernia,” Dr. Moore said.  “You need to get that taken care of.”  So scheduling the hernia surgery took over the focus of Gideon’s problems.  We managed to get him in to a good surgeon for Monday, March 24, the first day of spring break.  His back pain continued to worsen in the days before that, but we figured that the general anesthesia would give us a two-fer:  he’d get his surgery, and the total relaxation of all his muscles would cure his back.  And at first that did indeed seem to have happened.  After he woke up from the very successful operation, one of the first things he said was, “My back doesn’t hurt any more.”  Whew.  We’d gotten the result I’d hoped for.

But as the week of break went on the pain returned.  That weekend Gideon was in the kitchen when I heard a thump and his calling out to me.  When I rushed in, there he was on all fours on the floor.  “I don’t know what happened,” he said.  “I bent over to get something and there was this popping sound in my hip, and I couldn’t stand up.”  After awhile he managed to get back on his feet, but he was in terrible pain.  So Jim took him in to the emergency room, where the second set of x-rays was taken and pronounced normal.  The ER doctor was kind and concerned, saying that he thought Gideon’s sacroiliac joint must have shifted in some way.  He prescribed a painkiller, or a muscle relaxant, or something.  I honestly don’t remember, and I’m too lazy to look it up.  Jim had quite a time finding a pharmacy that was open after 6:00 on a weekend.  I just assumed that they were all open until 9:00, but no such luck.  And the new prescription did nothing much to help.

The next week classes started up again.  Gideon dragged himself in whenever he could, but there were quite a few days when he said that he just couldn’t make it.  I was very concerned, but I still thought of his problem as something muscular.  Hmmm.  Where to go?  I wish now that I’d just taken him back to our primary care physician.  I do think Dr. Moore would have ordered some type of further testing, perhaps an MRI, and Gideon might have been spared the weeks of pain that were to follow.  But instead I settled on taking him in to an osteopath at a practice near our house.  Somewhere I had heard an osteopath described as a chiropractor with an MD, so that seemed like a good next move.  But it wasn’t.  We wasted three weeks going in for useless visits, with Gideon being prescribed yet more drugs.  He also had yet another set of normal x-rays.  The osteopath didn’t do much in the way of manipulation, which as it turned out was a good thing, and he certainly didn’t do the neck-snapping procedure.  My blood freezes a bit when I think of what might have happened if he had.  Instead, our house began filling up with pill bottles.  Gideon struggled on with his classes, missing about half of them, and did most of his assignments sitting in the big recliner with my little laptop balanced on his knees.  He had a terrible time sleeping because of the pain, and we never knew when we got up in the morning where he’d be:  on the living-room couch?  the family-room couch?  the recliner?  One place we didn’t see him during those weeks was in his bed:  he had such a hard time getting up that he was afraid he’d get stuck there.

It would have been so great if the osteopath had said after the first couple of visits that he had no idea what was wrong.  He was clearly puzzled, but he kept telling us to come back.  Finally, he sort of dropped us.  He had said he’d call with a recommendation of where to go next, but he didn’t do so, and my followup call went unanswered.  It had now been six weeks since Gideon had first complained about his back.  What to do?  I had no idea.  Maybe . . . an orthopedist?  That seemed like the next step up the ladder, and Jim’s doctor cousin had suggested that specialty.  I went on the Aetna website to look up someone close.  There was a most unusual last name listed for one of the doctors:  Rokicki.  A woman in my chorale had that name.  Maybe this was her husband?  Might as well call him and have at least the illusion of a known quantity.  We were able to get an appointment early Tuesday morning, April 29.  Dr. Rokicki was very concerned and took quite a bit of time with Gideon, coming up with what he thought was the most likely diagnosis:  something called ankylosing spondylitis, a form of arthritis that tends to attack young adults.  The symptoms seemed to fit perfectly.  Here was the first doctor we’d seen who was trying to give us an answer.  And he knew of a good rheumatologist we could go to:  Dr. Kenneth Glassman.  But . . . we couldn’t get in for a week.  So we muddled on until May 6.  Gideon would take one of his pain meds and feel a little better, but if he continued with that particular one the benefits would subside and the side effects would kick in, so then we’d switch to another one.  I have to say that he was most conscientious about the dosages, sometimes holding off on taking something because he was trying so hard to be careful.  I periodically found myself in the rather strange position of urging my son to go ahead and take some powerful drug that he didn’t really want to take.  “You don’t have to suffer unnecessarily,” I’d say.  “You’re supposed to stay ahead of the pain.”  The week dragged on until we could finally go to our appointment.  I was sure that Dr. Glassman was going to confirm the diagnosis, Gideon would probably be put on steroids temporarily, and we’d start on the treatment regimen.  He’d have to deal with it for the rest of his life, as there is no cure, but it was described as a very manageable disease   But Dr. Glassman didn’t say what I had expected him to say.  He wasn’t convinced at all by Gideon’s symptoms, mainly because they had come on so suddenly.  That abruptness didn’t fit the profile.  The logical next step was an MRI, but he didn’t think it would show anything.  “We’ll keep doing more and more granular tests until we get an answer,” he said.

Dr. Glassman’s kind and efficient PA chose a stand-alone MRI facility near us.  I wish now that I had called around to see if anyone could take us right away, but there it is.  With an extra day of delay because the place lost the order, we were scheduled for Wednesday, May 14.  I honestly attached no importance to this procedure, worrying the most about how Gideon was going to endure lying on that hard flat bed for 45 minutes.  He came out looking pretty relieved, though, as he’d been able to sit up.  Okay.  No big deal,   On to Gideon’s last final exam on the UCD Auraria campus.  I drove him in, dropped him off, and picked him up, as the lurching of the light rail train was so painful and the station was located all the way across from his classroom building.  He was walking like a 95-year-old man when I picked him up, but he’d made it.  Now he had three papers to finish before Friday, and he’d be done for the semester.  (In case you’re wondering, he made straight A’s for the semester.)

At 4:30 the phone rang.  It was Dr. Glassman.  “I just got the report from the MRI.  Gideon has a mass on his spine.  No wonder he’s in such pain.”  I don’t know what I said.  Maybe just a gulp.  “This is completely out of my specialty area, of course.  But I can refer you to someone who’s really good.”  He gave me a name of an oncologist:  Dr. Robert Rifkin.  “I’ll call him the minute I get off the phone,” I assured him.  After a few more expressions of concern he hung up.  I immediately called Dr. Rifkin’s office at Rocky Mountain Cancer Centers.  Of course Gideon didn’t need an oncologist for anything but to rule out cancer, I said to myself.  It’s a benign tumor.  I’ve heard of several young adults who’ve had this problem.  They’ll take it out and he’ll be fine.  I just hope there’s no nerve damage from the tumor pressing on something, but that’s our only concern.  When I got through to the office I was told that we could get in to see Dr. Rifkin on Monday.  We’d have to get through almost another week, but then we’d be home free.  Talk about being hip-deep in denial.  That’s where I was.

Then I had to call Jim at work.  We had our Wednesday night church programs that evening, and I just couldn’t see trying to tell him there.  What he thought when he picked up the phone and heard me say, “Can you talk for a minute?” and then start crying, I don’t know.  Whatever this was, however easily fixed it might be, it was real.  Our son had been walking around in ever-increasing pain, with a tumor on his spine, for almost nine weeks.

The following Monday was the most horrible day I have ever lived through, and I wasn’t even the patient.  Gideon’s pain had increased day by day.  The oncology nurse had said that if his pain became unbearable before Monday he should go to an ER for pain relief.  I just didn’t know what that meant.  Would we march into someplace and demand a shot of morphine after waiting for hours with Gideon moaning in pain?  It didn’t make sense to me.  So, once again, we simply got through, switching around pain medications and doing everything we could think of to make Gideon as comfortable as possible.  He managed to get his final papers finished and sent in.  Monday morning he woke up at 8:30, almost screaming in pain.  I gave him two Lyrica (a medication specifically for nerve pain) and he fell asleep.  Our appointment was at 3:00, and Jim was going to come home at 2:00 and help get him down the stairs and into the car.  At 1:55 I went in to wake Gideon up.  He had gone back to sleeping on his bed and had ended up too far over in the middle to get to the edge.  (He found it almost impossible to roll over, and even if he was on the edge of wherever he was sleeping he had to go through a complicated maneuver to get onto the floor and then up on his feet.)  I wasn’t strong enough to move him, and he was in so much pain that I didn’t want to try.  We had to get him to this appointment.  Jim came in during all this and managed to get Gideon up, dressed, and on his crutches.  All this time Gideon was yelling in pain but gamely getting himself going.  He got to the top of the stairs, and I despaired of his being able to get down.  What were we going to do?  Jim was capable of carrying him, but that would make his pain even worse.  Would we have to call an ambulance?  Would they even come for such a thing?  But Gideon managed to get himself down and into the car.  I drove, figuring that Jim should be the one to help Gideon into the doctor’s office.  The place wasn’t very close, and traffic was beginning to build up.  We had called the office telling them we were coming just as fast as we could.  “If he’s still in such pain he needs to go to the ER,” the receptionist said, again.  “Oh no, he’s better,” I assured her.  How could we go to the ER and miss our appointment?  We had to get there.

Finally we arrived at the building, only about six minutes late.  I dropped them off, went and parked the car, and ran back, just missing Jim and Gideon coming down the elevator as I went up.  “I’m with Gideon Simons,” I said breathlessly to the person at the front desk.  “We sent him right back down to the ER,” a nurse said.  At that point I had a major public meltdown, bursting into tears and saying, “You have to see him!  You don’t know what we went through to get him here!  You have to!”   Why they didn’t phrase things a little bit differently I don’t know.  But they reassured me:  “Dr. Rifkin will see him there.  We’ve already called ahead, and they know you’re coming.”  So I went back down, still crying.  Jim and Gideon were standing in front of the building waiting for me, as they didn’t know where the car was.  If there’s anything at all funny about that day, it’s Gideon saying to me, “Calm down, Mom.  It’ll be okay.”  Jim went and found the car, as I was obviously unfit to drive and couldn’t remember where I’d parked anyway.  The hospital was two blocks away, and Gideon was whisked into a room almost immediately and, indeed, put on morphine.  I will never, ever forget the kindness of those emergency room personnel.  At around 6:30 the decision was made to admit him.

And that’s how Gideon ended up at St. Luke’s/Presbyterian Hospital.  In fact, Dr. Rifkin founded the bone marrow transplant ward there.  And his network of colleagues included a top neurosurgeon, Dr. Stephen Johnson, and the self-described  “crazy spine surgeon,” Dr. Anant Kumar, who arranged for Gideon to have a set of neck, spine and lower back braces and kindly came by Gideon’s room to go over his MRIs.  (Another funny story:  Dr. Kumar blithely ignoring the tornado warning that occurred while he was with us, continuing to talk as alarms sounded, staff arrived to take Gideon out into the hall, and his cell phone rang with two alerts.  He took the phone out of his pocket the first time, looked at it, said, “Hmm—they send these things on your cell phone!” stuck it in his pocket and kept on going.  Various people peered in the door as this was going on, but no one said we had to leave.  He was still talking when the alert ended.)  I began to realize more and more that by going to Dr. Rokicki we had gained access to a world-class set of doctors, people we would never have known about had we not started out with him.  I also realized that we had been incredibly fortunate to have ended up at St. Luke’s.  There are good hospitals all over Denver, a couple of them much closer to us, but we’d taken the first appointment available with Dr. Rifkin and that happened to be at his midtown office, two blocks from St. Luke’s.  I’d have to say that everything about it, as far as I’ve been able to see, is absolutely first class—even the cafeteria.  I’ve ended up eating a lot of meals there.

The contrast MRIs and CT scans that Gideon had that evening showed several distressing results:  He didn’t have just one mass on his spine; he had at least four.  Almost equal in importance, he had at least two collapsed vertebrae in his backbone caused by the invasion of the growth.  So not only had he been walking around with a tumor; he had, in fact, a broken back—in several places.  There was some pressure being exerted on the spinal column, although there didn’t seem to be any actual damage and there was plenty of spinal fluid behind it, acting as a cushion.  He couldn’t lift his legs straight up but he could wiggle his toes, so nerve impulses were getting through.  It was still pretty scary when Dr. Johnson asked Gideon to raise his legs and he couldn’t do it.  “It’s just from the pain,” I told myself, even though by that time the heavy-duty painkillers and steroids had kicked in somewhat.

The next big step was the biopsy, or rather biopsies, of the tumors themselves and also of the bone marrow.  The bone marrow biopsy was particularly unpleasant.  Gideon seems to share, at least somewhat, his cousin Brittany’s resistance to painkillers.  The biopsies took place on Tuesday, with results hoped for by noon the next day.  No treatment could be started until we knew what it was.  I asked a couple of times, “Is there any chance that this could be benign?”  The pitying looks and hasty reassurance that it was almost certainly “treatable” told me to stop asking.  It was almost certainly cancer of some kind, with the only questions being whether or not it was in the bone marrow and whether or not it was sensitive to radiation.  Noon on Wednesday came and went.  We asked a couple of times and were told that the pathologists were “conferring.”  That was fine, we thought.  Take all the time you need to be sure.  Jim was at work, but Lowell and Jan were there.  Finally, at around 4:00, Dr. Rifkin arrived with the diagnosis.

“We’re 99% sure that this is lymphoma,” he said, “and it should be very treatable with radiation.  The bone marrow came back as normal.  The pathologists are still figuring out exactly what type of lymphoma it is, but we think we know.”  His cell phone rang.  “So what is it?”  Pause.  “Good, good.  Thank you.”  Yes, it was indeed lymphoma, a particularly fast-growing kind, which sounds bad but is really good, as the fast-growing tumors are particularly fragile.  In fact, we were told later that one of the tumors had been growing so fast that parts of it had died.  Dr. Rifkin told Gideon that there was a “very cool” new drug that had been shown to target a protein on the surface of this particular cancer.  He seemed quite pleased to have a chance to treat it and wanted Gideon to get right down to radiation for his first atomic blast.  “It’s a little late,” he said.  “I’ll buy Dr. Hazuka a beer.”  And Gideon was whisked down to the second floor.  It’s interesting to me to look back on the start of Gideon’s treatment and to realize that no one said, “Is this what you want to do?”  A signature was required for the biopsies and later on for a port to be put in, procedures that required some anesthesia, but it was assumed that we wanted to start radiation right away.  And we did, believe me.  I have no complaints on this score.  We never had the conversation about treatment options that most cancer patients go through.  Gideon was in such bad shape, with such a risk of paralysis from the tumor that was pressing on his spinal cord (no one said this, but it was pretty clear), that there was no time for debate.  We could have stopped things, of course, but we had no desire to do so.

We had been told that the radiation treatment would really help the pain in addition to its primary purpose of tumor destruction, and that indeed seemed to be true.  Apparently the radiation caused some shrinkage right away, either in the tumors themselves or in his enlarged lymph nodes, so that there was no longer as much pressure on the nerves.  Within less than a week he was pretty much off the pain meds he’d been given upon admission and his steroids had been tapered off to a low dose.  His legs regained strength steadily, but he was not allowed to sit up at more than a 20-degree angle without wearing at least the neck brace.  It was a week after his admission until he was allowed to sit up, and he lasted for all of four minutes, but those times lengthened considerably, and by the two-week mark he was able to walk down the hall for a short distance.  Still with a walker, but still.

And so we settled into a waiting game, with radiation being given five days a week along with physical therapy, steroids, some drug to prevent blood clots, vitals being taken, etc., etc.  I’m ending this part of the narrative with his move to Spalding Rehabilitation Center on Wed., June 4.  (D-Day.)  That morning, before he was moved, he made two rounds of the inner hallway.  (28 rounds is a mile.)  Today, Thursday, will be his first full day there.  He gets three hours of rehab per day, and depending on how he progresses will be coming home probably before his radiation is over.

Except . . . what are some lessons learned so far, at least for me?  I can’t speak for Gideon, or even for Jim, but I can tell you some thoughts I’ve had.  I’ve been pondering these ideas quite a bit and will probably keep adding onto this section, but here are at least some preliminary jottings:

While you can learn as you go through the difficulty, it’s much better to have learned helpful lessons ahead of time.  The week between the MRI and the biopsy results was the worst and longest of my life, I think, but never have I been so aware of God’s presence and promises.  I was so grateful for the teaching we’ve had for the past 14 years, first at Capitol Hill Baptist Church and now at Parker Hills Bible Fellowship, about the sovereignty of God.  That principle was a rock for me:  God is in control, God is good, God loves us.  I always have such a tendency (as we all do, to some extent) to tip over into catastrophizing or to assume that everything will be fine.  My dear sister-in-law Joyce had mentioned that a co-worker had told her about several young people in his church who’d had benign tumors on their spines.  I remembered a doctor who’d told me, years ago, about his own benign back tumor and how painful it had been.  So surely, surely, that was what Gideon’s “mass” was.  Belief that I didn’t know what was going on and couldn’t assume anything tended to keep me from trusting in that hope.  On the other hand, I remembered the many, many times I’ve seen parents with children in wheelchairs and thought, “I could never do that.”  What if Gideon ended up like that, paralyzed or disabled in some way?  (Or suppose he didn’t survive?  But I pretty much stayed away from that thought, as much as I could.)  I probably did more crying and praying in that one week than I’ve done in years.

I also told myself, “Now you have to show whether or not you really believe what you wrote in your book.”  And you know what?  I do believe what I wrote.  My advice is pretty good.  I was especially conscious of how vital it is to take care of myself and take care of my surroundings when the crisis hits.  We had so many kind people offering to take on chores, whether feeding the cats, watering the plants, or even scrubbing the toilets.  How very kind, but no thank you, I said.  I need to do those things.  We can’t live at the hospital.  We’d drive ourselves and Gideon crazy.  It’s been so helpful to be able to say, “Look how well the tomatoes are doing.  How nice the kitchen looks.  What a good breakfast I made.”  Eating well was a tremendous help.  We haven’t lived on fast food (mostly because of the aforementioned hospital cafeteria).  I haven’t completely abandoned cooking.  And one of the sweetest memories of that terrible first week of Gideon’s hospitalization is the fresh spinach, asparagus and cheese omelet Jim made me Memorial Day morning as I was frantically working on the menu signs for a wedding reception I had promised to oversee.  He brought it to me as I sat in front of the computer, and it made all the difference in my morning.  (Yes, they told me I didn’t need to worry about the reception, but, as I told Gideon, it meant a lot to me to keep my commitment.  If he’d been having surgery I would have been at the hospital, but he wasn’t.)  I’ve gone on my regular weekday walks whenever possible and gone out to lunch with friends.  All this self-care would be much more problematic if I had other children at home, or I was trying to work at a regular job as well as doing the part-time job of being at the hospital, or if I didn’t have Jim around.   The principles would still be true, but they’d be much harder to carry out.  And at some point I’d probably let someone else scrub those toilets.

I think I’ll stop for now.  There’s a lot more to say, but I’ve promised myself that I’d get an update e-mail out today, Thursday, June 5.  If you’re reading this any appreciable time after that day you’ve probably read some later posts already.  So goes the world of the blog.  Thanks for reading – and praying.