In Sickness and in Health

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

The Scoop

Here’s the scoop:

  • Josh is on his way home and I’ll get to see him in a couple of hours.  Glory be!
  • My Mom and I have had a bomb of a time!  She’s doing all my work and I’m tagging along shopping with her.  As much as my weary body will allow.
  • My doctor visit went well yesterday.  I am off IV, that needle is out of my chest, the lung biopsy is proving negative to all major tests (including CMV), and I am on steroids.  Oops!  Don’t think that last one was supposed to make the positive list.  However, it is positive because it means that all they can figure out is that my lung spots are simply inflammation from a particular transplant chemo drug.  Sorta like what happened last summer with the Bleomycin only not nearly as bad.  We want to catch it with steroids before it gets bad.

So…basically the lung issue seems to be figured out.  The CMV level is continuing to drop so I am switched back to oral meds instead of IV.  So nice!

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Thank-you Jesus

We are praising the Lord for a successful biopsy.  Thanks to all who prayed.

I felt fairly relaxed right before, but the procedure wasn’t very comfortable.  Not really painful.  They just kept making me hold my breath for stretches of time.  Also, partway through I coughed up blood, having no clue if that was normal or not until a nurse assured me it was.  Ok…

They were successful in getting what they wanted and I came through without a collapsed lung.  I do have some air between the lung and chest cavity, which is what causes the collapse if it is in excess.  Thank God mine is a small amount.  After several hours of waiting and doing x-rays, we were released and are now relaxing in a nice motel.  We decided to stay in the area since we have an appointment tomorrow as well.

I’m so excited about my mom coming tomorrow!  Josh has some meetings in PA during the week that I wanted to accompany him to, but unfortunately that’s not happening now.  So my mom is stepping in AGAIN.  I’m so grateful!  I think it’ll be the longest Josh and I have been apart since being married (from Tuesday to Friday).  We’ll see what it does to us. 🙂

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Good-bye CMV

Heard from my doctor today that the blood cultures done yesterday are showing my CMV level coming down.  He said he’s surprised how far it’s dropped already.  Whew!  We are sending up praises.  Thanks for praying.  I’m feeling better than last week for sure.  Not as worn out.  I even baked some cornbread today without landing on the couch in an exhausted heap.

In the meantime I’m supposed to keep taking my anti-viral IV.  You may be wondering how that’s possible at home.  Typically IV needs a pump or gravity right?  This one doesn’t.  The device looks like a bottle and is called an Intermate Portable Elastomeric Infusion System.  It looks much like a small baby bottle.  Inside, and coming down from the top is a tube, 1/2 in. in diameter.  Around this tube is a rubber balloon full of the medication.  It’s called Ganciclovir.  Tubing carries the medication out through the top of the bottle.  When the tubing is unclamped the pressure of the balloon forces the medication out at a consistent rate.  It’s more complicated than that but that’s my simple way of explaining it.  While the medication runs into you, you can carry the little bottle wherever you go, tipping it upside down if you’d like. 🙂  The position doesn’t matter.

Since the tubing coming out of my port is long enough for me to reach it comfortably, I can hook myself up, which I’m finding great delight in doing for some reason.  I flush with saline, hook up the medication, unclamp everything and let it run.  When it’s done I finish by flushing with another saline and heparin.

Wow!  I just thank God I’m able to find some delight in this because lately I’ve been very low emotionally.  I feel like a child who’s been coaxed into facing one too many fears and finally it’s just too much.  I kinda snapped this last week and didn’t want any more doctors sending me to any more tests.  Courage is good, but it isn’t limitless unless God is the source.  I feel that I’ve about had it.  I can’t do this much longer.  Somehow His grace keeps me going from one test to the next; from a known present to an unknown future.  He’s good that way!

Please pray for my biopsy on Monday.  I’m not looking forward to it!

Here are some pictures of the IV device:

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Friday

Like good little patients we agreed to make the trek back to C-ville today.

We did labs (to check my CMV level) and then met with Dr. B.  We still haven’t heard what the CMV level is. 😦

However, Dr. B. did not want to wait for those results as well as the biopsy results of next week before taking action.  I was on oral meds for the CMV but he prefers the IV.  So…after meeting with him we came to the infusion center and I got infused with antibodies specifically for the CMV.  We are being sent home with IV anti-viral medication to replace the oral one.  Whew!  My head is spinning with all the changes he’s made to my meds lately.

We are just incredibly grateful that our doctor was kind enough to send us home with IV meds instead of hospitalizing me.  He said that it probably makes more work for them that way but he understands why I am loath to spend more time in a hospital.  And believe me, I am loath.

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Could I have my conclusion, please?

This is one of those stories that keeps rambling on and on after the climax and ends up a hundred pages too long.

Two issues that Jean’s dealing with at the moment:

1. Lungs. After some increased coughing and shortness of breath, Dr. Beitinjaneh ordered a CT scan on Tuesday. On Wednesday we met with the pulmonary doctors to review the results. Something pneumonia-like is definitely present. What it is and what’s causing it, they can’t tell without further investigation (of course). It could be bacterial (most likely not), drug/chemo-related, fungal, or viral. A lung biopsy will give them what they need, so that’s on the agenda for Monday. The process involves guiding a needle to the lung via CT imaging and grabbing a sample for inspection. Jean will be sedated for the procedure. The only possible adverse side effects are excessive bleeding and a collapsed lung, so please bring an overnight bag just in case. Lord, help us all. Fortunately, Jean has been coughing much less since Tuesday, so maybe it’s all miraculously gone.

2. CMV virus. Jean’s blood work from Tuesday indicated the presence of something called Cytomegalovirus (CMV for short). Apparently 90% of the population is or will be exposed to CMV at some point without ever knowing it. The virus rarely causes symptoms in healthy people but can cause complications for immunosuppressed patients. Dr. B wants more blood tests done tomorrow to see if the numbers are rising, falling, or stabilizing.

Both of these issues are treatable, hopefully with oral antibiotic, antiviral, and antifungal medications. The worst-case scenario is hospitalization for IV therapy, a possible scenario if (a) the CMV numbers keep going up or (b) the CMV is linked with the lung issue.

Please pray for emotional and spiritual strength to see this story through, especially for Jean. You would think after all the time we spent hanging out at medical centers, visits and procedures would be easy by now. Nope.

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More thanks

For the past week or so Jean has been dealing with some itching. In a lot of ways it acted different than lymphoma itch, but it was rash-less and unexplainable. And it brought back a tidal wave of doubt, gnawing fear, and prayers whispered into the darkness.

To allay (or confirm) our fears Dr. Beitinjaneh rescheduled the first post-transplant PET scan for yesterday.

The worst part of all scans is the time between the procedure and the results. The pictures are taken, the results are being processed. How do you pray during this time? Retroactively? The future feels determined; you just don’t know it.

This morning Dr. B walked into our infusion room and, with his characteristic wink, told Jean there’s no reason she should be itching, so stop it.

The scan is clear.

I confess. I wasn’t expecting it to be this good. I believe, help my unbelief. God did a lot of believing for me.

Thank you, Jesus. Tens of thousands of times over.

Of course a scan is always more complicated than a simple yes or no. In particular it showed a slight spot of something on her one lung which is most likely related to the lung toxicity caused by the ABVD chemo regimen. We are hoping it’s just a benign inflammation of some kind. Hopefully it’s not a fungal or viral infection. And of course the radiologist also has to include the possibility of HL involvement, however unlikely. Based on his clinical knowledge/experience Dr. B isn’t worried about the latter option, but he wants a lung CT scan done several weeks from now just to monitor it, whatever it is. In the meantime Jean will be on antibiotics to take care of or prevent any infections.

Her liver and spleen look similar or better compared to previous scans.

This is the first of many future scans. But we have this one to rejoice in.

The good news is:

1. No lymph nodes showed any activity. The scan is clear (his words).

2. The big, clunky infusion catheter is scheduled to be removed tomorrow.

3. White cells and neutrophils are in normal range.

4. Appointments are down to once a week…

5. …which means we are moving back to Catlett full-time.

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