Fun Evenings

The Hospice machine is still spinning up.  We’ve had visits from a social worker, nurse, case manager, oxygen delivery folks, a drug delivery folks.  We’re due a chaplain visit still.  The days have been relatively busy but the late-afternoons and evenings have been low-key extravaganzas.

Monday evening we had a nice dinner with Mom Mary, Mom Nickie, Brother Virgil and Sister Lori.  Tuesday I went roller skating with some friends who, afterward, all came back to join the festivities already in play at the house.  By 9PM we had hamburgers grilled and a camp fire raging.  Last night, more friends came over, this time packing Maudie’s delicious hot sauce, fajitas, beans and queso.  We dined outside on the back porch (for the umpteenth time this week) and had a wonderful time.

The oxygen delivery system we are using is multifaceted.  Our main tool is an oxygen concentrator that plugs into the wall, the ol’ DeVilBiss model 515ADS.  It’s slightly larger than a carry-on suitcase, weighs about 75 pounds and is portable, much like the suitcase-sized cell phones in the early 80s were portable.  It has wheels and a long extension cord so I wheel it to the bedroom, outside on the porch, into the living room, etc.  I took it upstairs one night after we first got it but that was less fun for me.  The concentrator doesn’t have a tank.  Instead, it takes existing oxygen out of the air, concentrates it and spits it out at the proper mix levels according to how we set the little dial on the side.  It’s not loud enough to be intrusive but not quiet enough to completely ignore.  It sounds (to me, at least) like a quiet lawn mower punctuated with a “ahhh… chssshhhh” every 10 to 15 seconds.  It’s not unpleasant and makes for pretty easy sleeping.

Also at our disposal are two types of tanks.  We have four very small travel tanks and one larger (and now empty) tank.  Initially, they gave us this ridiculous 4 foot tall wheeled tank as a leave-the-house-for-supper tank.  Maggie and I both said, nearly in unison, do you have anything smaller?  Fortunately, the answer was yes.  We took the big tank, moved that upstairs for TV watching (which is why it’s now empty) and we use the smaller tanks for travel.  Supposedly, on the most conservative setting, the smaller tanks will last up to four hours, plenty of time for a sushi or steak run.  Oh, and they are about 1/5th the size and can be carried in a quaint little carrying bag.  Perfect.

Tuesday we went for our first acupuncture appointment at The Healthy Practice. Dr. Chris Butler was quirky but nice enough.  I’ll bet all practitioners of acupuncture and oriental medicine are a little quirky.  But he seemed knowledgeable enough and claimed to be capable of helping.  So today Maggie’s headed back for round 2.  Who knows about all this stuff but I can’t figure it hurts anything more than the pocket book.  And it’s had more than its fair share of abuse lately so what’s a little more.  He wanted to talk with us about what we’ll do in six weeks if his treatments showed an improvement.  He didn’t want us running back to “standard” treatment if what he was doing was working.  I think he just wants us to appropriately credit oriental medicine if his treatment helps.  I told him that I’d love to have a conversation in six weeks about how great his treatment is working.  I’ll be his loudest fan.

The maids just left and the house smells like clean.  Pete and Leslee have graciously donated a little help for us keeping the house clean.  These ladies that have come out have done a great, great job and they are so polite.  Thank you very much.

Tomorrow, rain or shine, we fly to MD Anderson once again.  This time I’m going with.  Grace Flights, specifically, Bob Longwell is getting us there and back.  We have some tests, lab work, x-rays and who knows what else in the morning followed by a meeting with Dr. Kurzrock in the afternoon.  We are all anxious to hear what they have to say.  I have some things to say myself.  Should be fun.  And, frankly, I’m more than a little excited to fly with Bob.

12 thoughts on “Fun Evenings

  1. Maggie, I know you are in wonderful hands. Although we haven’t seen you in a while, Matt and I think of you and pray for you and Chris often. Sending many blessings your way…Matt and Courtney.

  2. Heres to enjoying every moment to the fullest and making memories to last a lifetime. I just finished reading a book that had a line in it that resinated with me. Said ‘I am going to rise with the sun and keep going until I can’t keep my eyes open any longer’ Sounds like you both are doing just that. Enjoy!

    P.S. Good luck at MDA my latest run in with them I won’t take up space here describing. The last time I told my husband I was going to have a little talk with someone he told me not to end up in jail! 🙂

    I work with a number of Chinese and they swear by oriental medicine. I wish our medical system would explore it further.

    My prayers go with you,
    Vicki

  3. Enjoy each other every minute of every day. Good luck at MDA tomorrow. Anxious to hear what they have to say. Prayers continue.
    Much love from Meme & BD

  4. I am so glad that you are having fun times together. Chris, thank you for allowing Maggie to have lunch with us on Tuesday – her strength is a true inspiration to me and a testament to how I wish to live my life. You are both in my heart and mind day and night. I am so proud of you! I look forward to reading about your MD Anderson visit and trip with Bob – just another angel out there for you. Give ’em hell!

  5. The weather looks to be very unfavorable for your trip tomorrow and all weekend. I’m flying a mission Monday into Houston Hobby after it clears up. Let me know if you get stranded and need a way there or back into the Austin area on Monday 4/20.

  6. Even though I have not met Maggie, she must be a very special lady since Chris loves her. You are both close to my heart and in my prayers.

    Forgive as soon as possible
    Love without boundaries
    Laugh often and without control
    And never stop smiling even if you don’t know the reason.

  7. Maggie has more inner strength than anyone I know. I have cried, laughed, hugged and kissed her lots this week.

    By the way, I got info from another young cancer survivor who swears by acai berry juice for reducing the tumor marker. Maggie says that is one of the ingredients in the capsules the acupuncturist presecribed to her. This juice tastes like a mix of grape and raspberry juices. It’s very tasty! If it is also shrinks tumors, we’re in for a miracle. And I am daily expecting a miracle. As my husband and Maggie both say, “If the tumors in the lungs grew that fast, they can also shrink that fast.” That is my daily prayer.

    XOX

    1. Whoops, sorry for any confusion… the acupuncturist did not give me anything with acai berry in it. He has not mentioned it as a cancer helper in any way. It tastes pretty good but I do not believe it is a cancer cure. Antioxidants are supposed to be go preventors… not so much treaters of cancer.

  8. TO MARY,
    Mary, I just want you to know that I have said many prayers for you, also. I can only imagine the stress you have been under these last couple years–the tears, the sleepless nights the constant hope that things will change for the better. Hold tight–there is always hope, and miracles DO happen. Chris and Maggie are fighting with all they have, and we are all in the circle of reserves to give anything we can to help.
    Meme, Chris’s grandmother.

  9. Oh I love acai and I’m a huge believer in acupuncture, granted only my dog has gotten it, but what a blessing it’s been. Dr. Oz also gives oriental medicine high marks. Chris and Maggie, I know the weather is not good today, but I’m hoping maybe y’all beat the weather and are in Houston. Much Love and bazillions of prayers and hugs.

  10. Weather is relly bad here in Houston right now. If you guys can’t fly back tonight, you have a place to stay with us if you need it. Call me or Emily on our cell phones if need be.

  11. Maggie although I have never met you I feel like I have known for a long time through the great people(Brooke Barber) you have in your life. I pray that God will give strength!

    Deena

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