In Sickness and in Health

Battling cancer with love, medicine, and the Giver of both.

Thanking God

I think I had mentioned in an earlier post that most of my counts were climbing but my neutrophils were being sluggish.  Well here’s the scoop from today:

For some reason the ANC (absolute neutrophil count) is often the last thing to come back on my labs.  So while they are pumping fluids and potassium and magnesium into me I wait to hear what those neutrophils are.  Today, Josh and I decided to both make our guesses before the actual count came back.  They were down to .55 last Saturday so we had that to go off of which doesn’t help a whole lot because they’ve been jumping all over.  (One day they went all the way down to .3 and the very next day they had tripled to .9).  Very unpredictable.  So…  My husband says, “I’m guessing they’ll be at .85.”  And I said, “I’m gonna guess 1.5 because I had a dream last night and that’s what they were.”  I laughed as I said it knowing full well that it would be quite a stretch for them to have risen that much.

So we waited…

And Dr. B. comes in for his normal rounds.  I see him with his papers and notes and he says, “Well, you’re counts are doing really well.  You’re neutrophils are up to 1.5.”  And I die in my chair from shock. 🙂  We both started laughing and told him I had a dream about that last night.  He found that quite amusing.

Personally, I think it was God just sorta saying, “Hey, I’m still with you and care.”

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Coasting (sorta)

The decrease in posts corresponds to the decrease in drama. But here’s gist of it as it stands today.

We are still living in Charlottesville. On every day except Sunday we spend several hours in the infusion center doing the things post-transplant patients do. Blood work, infusions, and doctor visits.

We keep meeting people here and there who make our “People Encountered at UVA” list.

Last evening we went home for a few hours and realized just how much we miss our real apartment. It was the first time we were home in four weeks or so. Did you know leftover coffee grows some impressive mold if left to itself for four weeks? My bad.

Dr. Beitinjaneh is pleased with Jean’s progress. All her blood counts are trending upward. The white cells are hanging around 4.0. The neutrophils haven’t passed 1.0 since the post-neupogen plunge. Dr. B isn’t worried about it, though. We’ll try to follow his lead. Apparently it will just takes the body awhile to sort itself out. Nevertheless, we would be glad to see them accelerate a bit, so that’s a specific prayer item. Jean’s energy is coming back, slowly but surely.

We are overwhelmed by all the card, letters, and gifts we continue to receive. We will try to give specific thanks at some point, but for now please know that we are grateful.

Our new, temporary address is:

524 Harris Road, Apt. 132, Charlottesville, VA 22903

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Transplant From My Perspective

Bless my dear husband.  If it would have been up to me, there would have been no posts during this time. 🙂

I finally feel up to writing so I’ll give you a little run-down of the last three weeks from my perspective.

Tougher than I thought!

Glad it’s over!

Would not want to repeat!

Ok…I’ll give you a little more than that, but that sorta sums it up.

The first week was relatively good.  Chemo was poured into me but I felt little effects.  I walked quite a bit in the little short hallway.  I played dice with my mom.  I watched a movie with her.  Just in general I functioned normally.

I had my transplant then on Tuesday of the second week.  It was the Wednesday after that that I started becoming very miserable.  That day and Thursday I was so fatigued.  That was probably my lowest emotionally.  I remember thinking, “I just can’t do this.”  The doctors would come into the room all cheerful and say, “Oh yeah, you’ll make it.  You’ll be fine.”  And I’d be thinking, “Do you have any idea how crappy I feel?”  They told me my counts would probably not come back up for another week and I could not imagine living like that so long.  I remember thinking, “If only they could just put me out for this week.”  In a sense God answered that thought because from that Friday until about the next Sunday (over a week) I slept most of the time.  I have basically no memory of that week.  It’s like it was blotted out of my brain.  After I had recovered somewhat my mom kept telling me things (still is) that she had said or that I had said during that time and I had no memory of it.  It was a little weird as I’ve never experienced that before but it didn’t really concern me.  UNTIL… we were packing up to go on Tuesday and Mom pulls down a bag from a cupboard and shows my sister, Shari, a bird cage I had received as a gift.  I looked at it and sorta panicked.  I recognized it but could NOT remember who gave it to me and both of them were looking at me like I had gone crazy.  My dear husband had given it to me the Saturday before.  And I had been “with it” and commented on it and everything but do I remember?  No.  Crazy!!

I do not remember when I started with the acid reflux problems but they came on slowly if I remember right.  I’d take tums or medication for it now and then.  However, after several days ?? (my memory is foggy) it became so bad I could barely eat or drink.  That week that I slept I basically ate and drank nothing.  My mom said that for one meal she cut a 1 in. piece of watermelon into five bites and I didn’t even get it all down.  Oh and I puked a lot too. 😦

I honestly have no idea how I made it through except for the grace of my big God!  Last night as I lay in bed, a suite bed not a hospital bed, I couldn’t stop thanking Jesus.

It feels like we have a lot to face yet or a lot that could go wrong, but I just pray to Jesus, “Please take control of my body.”

Thanks to all who prayed!

Btw…I have a new nephew: Zachary John, born today.  I’m so proud! 🙂

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T+15

We have been out of the SCT unit since yesterday afternoon.

Awesome, awesome and thank you, Jesus.

Jean tires quickly, but aside from that, she keeps doing well. Her skin rash is doing better, but it seems to be using up her white blood cells in the process. Currently, they are hanging around 1.7. The doctors don’t seem worried, though, because it takes awhile for the body to readjust to the lack of stimulants; they told us to expect some fluctuation. Her marrow seems to be working well otherwise because she hasn’t needed platelet or red blood cell tranfusion in the last couple days.

On Monday the dermatologist who checked the rash did a skin biopsy to rule out anything more malignant than a drug reaction. He’s 99.9% sure it’s drug-induced (his figure, not mine), but, of course, he’s a specialist who is concerned with a tenth of a percent, ergo, the biopsy (which will probably raise the certainty to 99.95%). We would be more concerned about the results if the rash would be worsening, but thankfully it’s heading the opposite direction. We should get those results early next week.

In the meantime, we have daily appointments at the cancer clinic infusion center for labs, infusions, and transfusions. Until these appointments become less frequent, we will be staying at our nearby suite.

Good times.

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T+13

Rule #1 concerning hospital release: Never set your heart on a discharge date, no matter how emphatic the doctor is. It won’t happen till it happens.

I think it mainly comes down to a difference in opinion between last week’s attending doctor (Dr. Kindwall-Keller) and Dr. Beitinjaneh. It also involved some miscommunication between the two. Yesterday Dr. K-K reaffirmed her conviction that we would get out this afternoon. The NP would be in with the discharge instructions and forms sometime during the forenoon.

But.

Since Jean is Dr. B’s patient, he gets to make the final call, and since he was didn’t see her all last week, he wants to get a better feel for how she is doing, and since he is very cautious and thorough, he wants her to stabilize a bit more and have her rash checked by a dermatologist before release.

Bummer.

Disappointment soon turned to indignation especially when I saw how the news affected Jean. So instead of boiling on the inside all day, I decided to let a few people on the STC team (including Dr. B) know exactly how we feel about this last minute, roller-coaster, miscommunication, discharge reversal crap (I only used the adjective form of the latter term in my conversation with them since I try to be Christ-like.)

If anger has a redeeming quality it’s in how it forces you to lay it out, say it like it is, and try to find some common ground. We are still disappointed, but I feel like I better understand Dr. B’s reticence. He doesn’t want to release Jean prematurely only to re-admit her in a few days. I also think he understands how we feel on the receiving end; it’s more than just being in the hospital one more night.

I say one more night, but after this morning I refuse to believe it until it happens. I’m a Stoic. A burned and calloused cynic. (Am I still boiling a bit? Perhaps.)

The good news is that her energy keeps getting better. The eating and drinking keeps improving. The white counts are dropping a bit, but that’s to be expected after they stop the GCSF.

Please pray for the rash and for release as soon as possible. And for grace and peace and patience.

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T+11

The counts get better by the day. White cells are over 5 and neutrophils are over 4. They are stopping the GCSF (bone marrow stimulant) today because she’s on the low side of the normal range.

Side effects still come and go. She’s been averaging about one upchuck session per day, but overall the food is going down and staying down in greater quantities. The vomiting is not due to nausea but coughing fits brought on by the acid reflux. We think it’s the reflux anyway. They did a chest x-ray this morning to make sure.

The main thing we’re still trying to figure out is the rash. Thankfully it’s not terribly uncomfortable, and it doesn’t seem to be spreading. Most likely it’s a drug allergy that will disappear with reduced medications.

The docs are still aiming for discharge on Monday. I love the sound of that. Discharge–so emphatic, like they’re going to launch us from a cannon.

The weather, the trees, the flowers are warming, greening, blooming with her.

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T+9

WBC at 2.5. Neutrophils at 1.61.

No kidding.

The target date for discharge is Monday. Hopefully this gives them enough time to get the C. diff under control and figure out what’s going on with the rash.

This is awesome.

 

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T+8

Yesterday was rough because of a late and interrupted previous night. Throughout the day Jean tried both solid and liquid foods with zero success. In her case what goes down must come up. Finally, later last evening she ate and contained six or more small bites of rice soaked in sesame chicken sauce (she orders we accommodate).

So far so good. We haven’t tried anything solid this morning. By the time she chokes down all her oral meds she is usually too tired to eat. However, liquid substitutes (shakes, fortified drinks) are better than nothing and they seem to be staying put so far.

The good news concerns her blood counts. WBC is up to 0.81 from 0.37 yesterday. ANC (neutrophils) are up to 0.16 from 0.02 yesterday. That’s impressive if you do the math.

Overall, the rising counts seem to be contributing to her energy levels. I particularly noticed it this morning after she slept a longer night. This morning after walking back from the sink (with far greater steadiness than yesterday) she stretched, smiled (a beautiful rarity these days), and murmured something about feeling the strength of Jesus. Then she burrowed under the blankets again.

Things go up and down (quite literally at times), sometimes even in the same day, but the general trend seems to be heading up. Thank God for that.

Some specifics to pray for:

1. Stomach and eating ability.

2. Healing from the C. diff. which is in fact C. diff. The symptoms are fairly mild but still there.

3. Protection against infection. Whenever her temperature spikes a bit they do blood cultures. Last weekend a sample taken from one of the three lines of her chest catheter indicated the presence of bacteria, so they did more cultures the night of T+6. If all was clear, they could rule it out as contamination during the draw. If it showed up again they would have to consider removing the catheter and using the Mediport to prevent further infection or sepsis. We found out this morning that all was clear.

4. Skin rash. Last evening she starting itching because of a mild skin rash. It could be a host of things: low platelets, reaction to certain new meds, or just a heat rash. Benadryl seemed to help some. Thankfully, it hasn’t been terribly uncomfortable so far, but we don’t want it to get any worse.

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T+6

This morning Jean’s white cell count was up to 0.17. Yesterday it was 0.11. Saturday it was virtually at zero. The docs are saying it’s definitely trending upward, and in record time too. Thank you, Jesus. After the neutrophils (a specific type of white cell) reach 0.5, we will be discussing the possibility of discharge. With such a low total WBC the amount neutrophils is negligible at this point, but they should rise concurrently.

The discouraging part is Jean’s eating ability, or rather, lack thereof. Her stomach rejects anything solid, but then complains and upchucks for lack of anything solid. It’s an implacable brat.

Please pray specifically for this problem. It’s wearing and discouraging for Jean.

Other than that she is doing reasonably well. Sleeps hours at a time.

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T+5

Tracking Jean’s progress is so difficult because it always involves some intangible components. According to the numbers Jean is still at the bottom. She is currently getting a platelet transfusion, at some point today she will probably need a red blood cell transfusion. She still has diarrhea, and she still throws up periodically because of the acid reflux.

But…

1) She slept a long, restful night. During the day she is able to sleep a lot as well.

2) The diarrhea frequency is diminished.

3) Her eating and drinking ability is increasing ever so slightly thanks to an improving esophagus.

After checking up on Jean this morning our nurse practitioner, Carrie, declared that Jean’s color improved over the last several days. At T+5 she is cautiously optimistic that this might be the beginning of the upswing.

After the NP left the room, Jean motioned me down to her bedside and murmured, “I think I’m going to make it.”

I saw the brief surge of hope in her droopy eyes and weak smile.

It feels almost foolish to hope for steady improvement from here. Then again, “there was never much hope, just a fool’s hope.”

Hang cautious optimism, of course you’re gonna make it.

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