Thursday and where IS everybody. . .

Hi Y'all,
You know, the second part of yesterday ("Day 1") was a bit incomplete. But we were all tired & things were stable and, well, sometimes shit happens and you just don't think it's worthy of the ink. And it wasn't, still isn't but it's a positive thing that preceded a frustrating day - which had a great conclusion by the by.
Anyway, when we got home from the protracted therapy we actually went over the pertinent paperwork re: possible side effects, when to call the doctor, etc. And darn it wouldn't you know that Leenie's much-needed nap was interrupted by diarrhea - a flagged side effect of course. Soooo, she took 2 Imodium & was to take one after each episode. I think she may have taken 1 more and then slept until 5 AM. I, of course, slept very lightly & distinctly recalled seeing - & waving to her - around 4 AM, naturally thinking the runs were still upon us.
In fact, she was fine, I slept late, Dr. Cross' office finally returned yesterday's call @ 9 AM & Phil told them Leenie was still abed.
Obviously his nurse was not pleased & Leenie spent the remainder of the day trying to reach this nurse practitioner who alone knows when her next appt./treatment is - information that would be more than handy what with the prospect of happiness & comfort & enjoyment of Leenie's visiting detail next weekend.
MY frustration centered on "the TV Guy", as my son is fond of referencing. TV Guy is part of a wonderful Christmas present from our children which, once installed, will allow us to see both cable & local, ie Steelers' games, on our tvs. I don't ask questions but you have to be "special" to know TV Guy & he had been here once w/ Philip under some ruse & during much company & confusion. I just recall asking him to help Julie (or anybody) to rotate & straighten the Christmas tree - & everyone glared - except TV Guy.
Well today, he was supposed to finish the present (Doc Phil growled @ me, "we're watching the game @ Phil's Sunday so you don't need anything from SaM's. WE WILL NEVER GET CBS!") And Leenie called nurse practitioner again (she was on a break) I fed the dog (again), Philip called to say TV Guy was going to be late, Doc Phil came home from Sam's (sans saurkraut) & got ready for work. Then Bridie loudly announced TV Guy, one Ron Taylor, dear friend/helper of Robyn's parents, who, armed w/ several boxes and 4 hrs of chit chat installed, set, tested "tv things" and instucted me about things TV such that we get local channels & cable beautifully, I know more about his personal, psychological, social and professional life than anyone in the world (AND the same HIIPA-forbidden info about his former wife, "multi-personalitied-daughter and her 7 year-old (TV Guy-raised since 4 mos) guitar progeny son ). And Leenie was told to please call back tomorrow. Philip will be coming over to watch the Steelers w/ Molly & Patrick & Julie left a message (who had time to answer the phone?) that they will be baptizing Mia on February 6 @ 1 PM in Richmond.
So Leenie's Day 2 was really good from a medical point of view - what's a little diarrhea - but she's pissed at the nurse practitioner whose hours, per Leenie, are about 3.5/day w/ Weekends & Wednesdays off (the Virginia "w" rule). That's it. Gotta watch TV. . .
Lorane
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Tuesday, Wednesday

Hi,

Yes, we were missing but in some hectic action. Yesterday, Leenie was pacing & edgy prior to our meeting with the financial aid person. Naturally we were late. She had given us specific instructions - as is her wont - to be in the lobby of specific bldg X at specifically 10 AM whence we would dial a 10 digit number followed by the cagey & specific "1 2 3 #" which would precipitate her appearance with specificity and punctuality and gracious leading of the way to our specific trysting place.

Wellll, it was raining, we left our house @ roughly 9:45 AM and amused ourselves during the trek into downtown Norfolk fumbling through a manila envelope stuffed with sheafs of information in the form of documents, bills, various lists of thigs Eileen did not own, so very short lists, and official profers of identification, ie, Birth Certificate, Social Security Card, Automobile Titles which Leenie also did not have thereby lightening the manila load considerably.

We were maneuvering this treasureless trove alternately with the large telephone book because we thought we were to use the magic number only when we were once inside the lobby of Specific X so we were trying to find the general public's access to Ms. Susan Massey which was complicated by the fact that "the Bitch", as Leenie is fond of saying, is employed by "ChamberlinEdmunds", Eligibility Specialists which service, if one chooses to let one's mind roam, could lead to dastardly provisions indeed. (And I do think they should have kept the 'a' in Chamberlin if they wanted to play with the adults, don't you?) It's of no moment as neither Ms. Massey nor her august employer were listed. We were getting frazzled - but almost there - (it's so hard to scan tumbling pieces of paper & "manage" a phone book search when you're driving a rented vehicle (My poor little "back-ender" is still in ICU) with wipers going on when I thought I'd used a directional & vice versa). Wellll, 3 blocks from the Medical Center Campus, the cell rings - somewhere between us & I found it to be the Massey woman herself so we went right into gear using those terribly relieved, happy, embarrassed, nauseating tones of voice saved for such occasions as I relayed to Leenie how fortunate we were b/c you'll never believe. . ."oh, no, really? Please let me explain to her. . ."And so it was that minutes later, I dropped Leenie off at the Main Hospital adjacent to the Childrens' Hospital, sporting its Charlie-and-the-chocolate-factory "look"and went off to the parking garage, visible in the far, bleak distance, telling her I'd meet them wherever. But no, after schlepping back, about to inquire as to Leenie's location, Leenie called my name from behind, simply saying, "Lorane. There she is. She insisted on waiting for you."

And after settling comfortably into 3 office desk chairs lined against the wall in a hallway, the Meeting began. Forms, forms, forms. . .questions, questions, questions - state and federal - re: who are you, how did you get here, whom are those living at this address and this address? And cryptic comments, her favorite being, "I can only write down what you tell me.". Leenie & I would take turns with what seemed to be feeble attempts at clarification - "Yes, she's not able to work because she is disabled. (one of her blank-tape glares) "Ah, I see. She is disabled because the cancer causes a great deal of pain. . . because the cancer prevents her from using her right arm presently. . .because she doesn't have the stamina to point to an unruly student. . .". Finally, she scoured her notes with the order & dexterity of the astigmatic and said, "What was the first thing you said, 'the cancer completely interferes with her ability to function'"; that will have to do. After an overly extended discussion of "Of which state is Eileen a resident?" - a matter which will be decided by codified law & the state which harbors her person at this time, Leenie signed 20 or so forms which will now be processed, ruled upon and either accepted or appealed.

Our "advocate" scurried off mumbling, to the Great Eligibility Shaman, her Supervisor, where they would chant, choose and chain the matter UP - perhaps to Chamberlin him/herself. . .

We lunched at a divine, very old-Southern-Townehouse-turned--cafe and admired the lively, giggling octagenarians who were having a wear-an-outrageous-hat Happy New Year luncheon. And Leenie had a marvelous open faced medium rare roast boef sandwich and their specialty muffins.

Whew!

This morning came rather quickly. We were off to the Medical Center for round #2 of Chemo #1 therapy. I had called Dr. Cross Monday on another matter and he told me it would be today @ 9:30 AM- don't be late; when we got home from "The Painted Lady" lunch yesterday, Phil told us Leenie would be having chemo at 8:00 AM today; Leenie then called and the nurse said her treatment would start at 8:30 AM. (As a nurse, this would burn me. And if half way through treatment, Clara Barton leans over & sweetly inquires reassuringly, "You are Ms. Vooder, Hodgkins, right?" who can be so bold as to call Med Mal attorneys litigeous liars?)

The nurse (of course) was right. The system was wrong. First they drew blood for a complete blood cell count and, based on those results, Dr. Cross would be contacted, informed & given an opportunity to make chages in dosage, rate of infusion and any additional medications he felt might be warranted.

Therefore, the therapy/infusion of the chemo began around 8:20 AM & we left the hospital at around 1:45 pm. After pointing out some time-consuming problems, we all agreed that next week, Leenie can get her blood work done the afternoon before at a hospital she can walk to and the results will be faxed to the Infusion Center in Norfolk in time for the nurse to relay them to Dr. Cross for evaluation/recommendations.

We've been having a nasty, windy tropical storm since we arrived home. Perfect for sleeping. And so to bed.

Lorane

,

We invoke your special help, Saint Peregrine, for all religious life that they may remain faithful as you did to their vows, and ever steadfast in their commitment to Christ. We seek your merciful aid, Saint Peregrine, especially for those afflicted or threatened by cancer, by an ailment of the foot, or by any incurable diseases. Please, help us quickly to find a cure for cancer, and a remedy for all our human infirmities of soul, mind and body. Amen. --Prayer Accordint to the Life of Saint Peregrine, Patron Saint of Those Afflicted with Cancer.

Monday (Matt (Julie's husband's):b-day: comptonjl@gmail.com

Hi,
It was a really slow and "stuffy" day for Leenie. She's been eating so well but not keeping her liquid intake up with her solids. Result: Nutrition train came to a screeching halt - you know the feeling. But she got a little help and lots of room to fill up again. Sooo, starting w/ a little veggie Chinese, she's back on track.
Tomorrow, we'll be jamming. We will meet with the $ lady @ 10:00 am. She's been wonderful - not only with filing the forms for federal disability but procuring the Ohio forms so that Leenie can apply for Medicaid as well. And on Wednesday, Dr. Cross has scheduled blood work and her second round of the Gemsar at the Infusion Center.
We are hoping to take a break Thursday & see a movie. Keep those prayers coming - we're on a positive roll!
Lorane
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Sunday

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Hi,

Late, but here. It's been that kind of day. We all slept in - enough to miss the 9 am mass. So, 11 it would be. Leenie had breakfast; sat out on the porch watching the water; then took a nap. It was too late for Phil & Leenie to get to mass so I got there, spoke @ length with Msgr. Ray and stopped @ Office Max b/c Leenie wanted to make her own Thank You notes on the computer & we weren't equipped?

Of course it was also football day; Dad was OFF; Jen dropped in for a visit and then Phil, Leenie & I gave each other the Eucharist - VERY special. After that, football; chores; Leenie read & napped - kind of contemplative, reclusive for the rest of the day. She was asleep by 10:15 and I think that was what she needed- no complaints, eating very well but - can I be alone to "digest", please?

And now, I think I'll follow suit - knitting up the ravelled sleeve of care and all of that. DO keep the comments and emailed photos coming . . .

Lorane

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Friday & Saturday

Hi,

Looking at our posts, you'd think NOTHING happened on Friday. Au contraire. Dr. Ryan, in consort with Dr. Cross, discharged Leenie to home! (Every development seems tgo be a surprise). I was with Peanut & Brian & Paul had to get their plane, so Godson Philip brought Leenie home after gettng her prescriptions filled and stocking up on Hearty Campbell's soup. He called to say she was comfortable & glad to be home and that I should pick her nausea medicine up on the way home as they didn't have it ready. (He also doubted she would need it. She'd been eating quite well & was ready for her soup. Philip said the medicine she takes in the morning to increase her appetite is testosterone. (He's in pharmaceutical sales but he's also Philip, godchild of Leenie so who knows what it is).

Brother Phil got home around 4:30 & reported the same good news. It was truly amazing. I arrived around 6:30 and she looked wonderful! She's had none of the bad side effects of either drug and apparently we will be receiving instructions by telephone from Dr. Cross' staff re: her next treatment which will be Wednesday - probably at Dr. Cross' Oncology Center.

Leenie went from believeing death was embracing her on Monday to being an OUT PATIENT with a lot of reading and grateful prayers to say on Friday.

Today, Saturday, she was up before me (a fact she annoyingly made a point of noting), had toast w/ butter and strawberry preserves & coffee. Her face is fuller - 6-7 lbs or so fuller and she has real color in her cheeks (& maybe Tuesday we'll do something about getting the real color out of our roots)

It's a relaxing, cozy day. One would be surprized to think anyone here was anything but tip top re: health. (That may change if doc Phil has Emiryl's sausage for dinner. Leenie, Bridie & I will all need Compazine).

Till tomorrow,

Lorane

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Mom Returns to Linbay

Mom was discharged from the hospital early Friday afternoon. When Paul and I left to go to the airport she was in great spirits and very excited about getting out. She gained six pounds this week, which is a big step in getting healthy again. The goal now is to continue this at home. Since Mom enjoyed the soup so much, we discussed stocking up on cans for easy access when she's home. Keep eatin' Mom!

~BDH