Headed Home

We are headed home soon.  The pain is fairly under control finally, although it’s far from gone.  Dr. Loukas arranged to have us take a to-go pain pump with plenty of pain-killer for the trip to and from Houston.  We are hanging out up here at the hospital just long enough to make sure the new pump is working and that it’s set at a good dose.  Then we are back to the house.  Yay.

The pain is fairly under control, finally.  We are leaving the hospital with a little pump attached to a tube with one end attached to Maggie and the other attached to a baby bag of dilaudid.   The pump doles out 0.5 mg each hour with a manual boost of 0.5 mg as needed.  And it’s doing its job.

HW290 still looms, with the bumps and the curves and the stopping.  Fortunately, we also have permission to dial it up as needed for the ride to Houston just in case.  We had to pinky-swear to the nurse that we would not turn it up to 11.

Dr. Loukas thinks that the sudden-onset pain is from the liver rubbing up against her diaphragm.  As is obvious, the only real solution is to get that liver shrinking.

Sadly, Dr. Loukas was underwhelmed by the clinical trial we’ve chosen to participate in.  He was hoping that MD Anderson would have some special sauce that they’d be adding into the mix of chemo drugs that would possibly deliver a little extra whammy.  His underwhelm-ment bothered us but we are refusing to be too alarmed.  The reasonableness of the study, at least to us, still stands and we have high hopes of quick success.

Our Master Plan is to hit the tumors with the stuff in this study and get the pain out by way of some much needed liver shrinkage.  After the pain goes away, follow up this treatment with a more risky, long-shot treatment – some of that special sauce Dr. Loukas is hoping for.  Now that we have a relationship with CTRC, START, NCI, and MD Anderson we will have quite a choice of sauces to choose from when ready.

We’ve learned the secrets of living at the hospital.  Ear plugs are a required accessory for sleeping.  And don’t try to sleep on the cot they provide.  Pull the mattress off the cot, slap it on the floor and sleep there.  And bring a flashlight because the lights here are either off or SUNLIGHT which makes it hard for the eyes to gently transition for 3AM bathroom trips.  Bottle water sure is a handy thing to have, too.

It’ll be good to sleep in our own bed tonight.  Maybe Amy will even let us borrow the puppies, too (she’s graciously puppy-sat for us yesterday and last night.)   We’ll have sweet dreams of tumors melting away under the scourge of powerful chemo drugs next week.

5 thoughts on “Headed Home

  1. SOOOO glad to hear the news. Maggie was looking so much better today. I was so glad to see all of the smiles she had for Chris.

  2. The medical knowledge of stage IV cancer treatment seems pretty limited. A lot of the clinical history is front loaded with older subjects. What they have proposed may just not seem new to your oncologist. Youth is a unique variable. Perhaps the scientists see the potential of young strength to better pioneer the higher end of the dosage curve, gain data and give Maggie the fuller advantage of the current standard tools.

    Pain Managment; Not to get too medieval but a liver and its tumors are full of blood. I wonder if there would be some temporary pain relief for Maggie if they just drained off a pint. Maybe working the arms and legs might help get more blood volume redistributed to the muscles?

    Hold Fast & get some rest

    Don MacLeod

  3. So glad you are home. Hang in there. We’re with you all the way. Many, many prayers amd well wishes. All our love, Meme and BD
    Donald sends good wishes and prayers, also.

  4. Don’t forget the sleep masks too! Good luck at MD Anderson. It sounds like relief may be just around the corner!!! Thinking positive thoughts….M, N, and S

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