Back

After checking our kicking and screaming wills at the hospital entrance, we checked into our 8th floor suite. The one with the power-assisted bed, constant air filtration, sterile everything, and invasive but helpful staff. The upside is the spectacular view of the university’s buildings. All brick with white trim and pillars–part Colonial Revival, part Neo-Classical, and quintessentially Jeffersonian. The man sure left his mark on everything he touched. (I’m not trying to vaunt myself as an architectural connoisseur. I  didn’t know diddly beans about any of this until I noticed some patterns and started snooping. Wikipedia gets most of the credit. Read more about it here.)

It was harder to come back this time. Treatments 1 and 2 seemed easy because we were desperate to get rid of Jean’s itch. This time we were enjoying consciousness again.

But we are grateful that things are moving forward again. Jean gets fluids tonight, chemo tomorrow, then more fluids on Saturday. Since she is only receiving one chemo drug, we should be out of here by Saturday. Should be.

Stem cell collection happens about a week after this. Please mention this to God specifically since this is the next big hurdle in the whole process.

Moving on.

Plans

We were happy to find out yesterday that Medicaid has approved everything and we are free to move ahead.  Praise the Lord!  Plans are to be admitted tomorrow and hopefully released Saturday or Sunday.

I’m dreading everything.  Much more than the last two times.  Josh reminded me that the last two times we were desperate to get in there because I was either itching or having hot feet or something. 🙂  Now I just feel pretty good.  Don’t want to mess it up.

To laugh or to cry

Check out this video.

Wish I could express myself this way at the doctor’s office.

Home

No admission today.  Next Thursday it is…as of now.  It’s not really a question of Medicaid approving the transplant.  It’s a matter of them getting more medical information.

We are home.  And glad to be.  Despite the frustrations of the last few days, I’m enjoying the thought of having almost a whole week absent from the incessant medical demands.

i.e. “Could you please be at the cancer center at 4:30?”  Well, actually I’d rather be touring in Iceland, thank you very much.

“We have an appointment for you with TAC at 10:00 am tomorrow.”  And what if I don’t show up?

“You’re scheduled for a PET scan at 12:00 noon.  You’re not allowed to eat or drink after midnight…”  Do I get to puke all over you if I do?

Long live the medical field!

????

Most of you probably think we are nicely settled into the hospital and receiving chemo.  Hmmm…

Medicaid is being a turd.  UVA claims they are doing everything they can.  And Josh and I are trying to be Christ-like.

We thought we were told that Medicaid had approved this whole transplant thing.  Now we hear they approved mobilization, but not the actual transplant.  Don’t ask me to explain that.  Sometimes I think bureaucracy learns big words and then slings them around to frustrated patients when they don’t know what else to say.

To be interpreted… We are not allowed to be admitted until Medicaid gives the go-ahead.

Quite honestly, I have this deep down feeling that God is actually the one controlling all this, even though it feels like Medicaid is the problem.  And that gives me great peace!  I’ve thought of reasons why perhaps it wouldn’t be good for me to have chemo right now.  Maybe my body needs more rest.  Only God knows and quite frankly, He’s more in control of all this than we think.  I’m satisfied with that.

And not to be over-positive (That would be horrible, right? :)) but a huge thing to be thankful for is that we aren’t being delayed because of health issues for me.  Oh my!  When I think of it that way, I’d MUCH rather be waiting on Medicaid.

So…our doctor said that if we don’t hear from Medicaid today we probably won’t get in until next Thursday.  In fact, we have the option to just say we want to wait until then.  For now, we’ve decided to let it in the Lord’s hands and if Medicaid approves today we will probably go with it.

Pray for a large dose of love and grace as we work with the medical team.

 

God is my Guardian

I must admit this cath placement was scarier than my port placement.  Glad I didn’t know what all would happen before I did it. 🙂

Prior to the procedure, the nurse had gone over all the possible risks like they always do.  I smiled and shrugged them off, knowing they weren’t very likely (I should know by now to expect the unexpected).  One of them was irregular heart rhythm during the process.

So…I was lying there partially sedated but still very aware of what they were doing.  The doctor was numbing and cutting and pushing and pulling, but all was going well.  Then I started feeling irregular heart rhythm and of course it freaked me out.  Along with it I was having difficulty breathing.  My chest felt heavy.  Whether that was from the procedure or just from panicking I don’t know.  I squeaked out, “I don’t feel good.”  And then told them my heart feels irregular and it’s hard to breathe.  They stayed extremely calm.  Of course, they had me on heart monitors so they could tell what was going on.  Ohh boy!  I didn’t know if this was the end of all things or not.

The nurses and doctors calmly stopped the procedure and gave me some heart-slowing meds.  When things were calmed down, I asked why that happens.  The nurse explained that the doctor was inserting a wire into the right atrium of my heart where the impulses are regulated.  This wire can mess up heart rhythm.  It doesn’t happen very often to people, but it is a potential risk.  Well, there wasn’t anything potential about this for me.  It was a reality.  We concluded my heart is very sensitive.  Hah!  Think I could have told them that.  My whole BODY is sensitive to everything that’s put in it!  NOT a good thing when you have cancer.

Regardless, we thank God for a successful placement.  My chest looks ghastly right now.  They had accessed my port to give me meds and we decided to leave it accessed for tomorrow when I’m admitted.  So…I have two great big bandages on either side with lines and ports hanging out.  It looks more alien than human.

Cath placement #2

Recovering and doing well.

Cath placement

Signing the consent forms.

Liver MRI results

After reviewing the MRI with the radiologists and the transplant team, Dr. Beitinjaneh is moving ahead with the planned course of treatment. Because of all the possible factors (chemo and multiple medications) they still cannot rule out lymphoma conclusively, but their concern is not high enough to warrant further investigation via liver biopsy (a risky procedure).

So we still don’t know absolutely for sure, but we have reasons to rule out lymphoma.

1. The PET uptake is generalized as opposed to specific.

2. A benign lesion on Jean’s spleen has not changed since last October. (We didn’t even know she had one, or we might have worried.)

3. The lymphoma in other regions responded beautifully to the chemo.

4. Jean is feeling increasingly better.

While we would like to know conclusively, our biggest concern was the question of moving forward with the transplant. If, in fact, it were cancer, the transplant chemo should take care of it.

Forward we go.

Join us in thanking God for this report. Also keep praying for her liver (and all the other organs that could be torn up by chemo.

We keep going back and forth on hospital admission, but the latest report states it will happen early Thursday afternoon.

Our day yesterday

Still waiting for results on the MRI from yesterday.

I did NOT enjoy the test.  The last time I fell asleep for it, but this time I had to hold my breath for certain amounts of time over and over.  I do NOT like to hold my breath for tests.  Makes me feel panicky.  Especially when I don’t know exactly how long I’ll have to hold it.  They told me the longest would be about 20 seconds.  That’s not long, but for me it’s long enough.  But most of the time I didn’t exactly know how long it would be.  So, you hold your breath and you hear this annoying string of beeps and you know you can’t breathe until they’re done.  Sometimes my whole bed shook.  Hmmm…makes me wonder how THAT is connected with taking a picture of my liver.

If you’ve ever had an MRI you’ll know that there’s not much wiggle room.  They ask you numerous times if you’re claustrophobic.  Fortunately I’m not.  So, you’re kinda stuck in this tube.  I’m listening to classical music which is constantly interrupted by their annoying commands to hold my breath.  They have these nice little speakers in there to transport their commands.  So, about 3/4 of the way through the test, the voice tells me that they’re now going to inject me with contrast (they have my port all hooked up so they don’t have to take me out to do it).  The voice says, “If it burns or stings a bit that’s normal.  But squeeze your panic button if it really hurts as it goes in.”  This is one of the things I hate the most about this whole process: The apprehension of lying there and waiting for potentially bad things to happen as they inject you with…you name it!

We had a REALLY good meeting with the doctor and coordinator yesterday.  Yes, I signed a bunch of papers, but it didn’t take three hours.  And guess what, I never got to slap my coordinator.  She didn’t repeat her favorite line.  I was actually more worried about bursting out laughing if she did say it than slapping her. 🙂

I am so grateful for the humor of my doctor.  We are often laughing in his office.  He showed me the picture of the PET scan…mostly a skeletal image.  He pointed to it and said, “That’s you!”  Hmmm…very flattering.  He was showing me the darker spots around the liver that had shown up.  Then he said, “And for women, the tongue always shows activity.”  Oh my!  Laughter is the best medicine he gives.

I cannot tell you how wonderful it is to sleep through the night again!  I am enjoying every bit of it!  I still often live with a slight headache, but nothing really bad at all.

I think that’s all for now folks.

Oops…I forgot a key bit of news.  I am not planning to do the ICE chemo regimen again.  Our doctor told us yesterday that in discussion with the team, he feels another round would be too much for me.  He feels it was plenty hard on me this last round.  He is switching to a regimen of just one drug, which also means our hospital stay will be shortened.  I won’t be admitted until Friday and then hope to be released either Saturday or Sunday.  We are relieved to say the least.  I don’t know what another round of ICE would have done to me.