Eileen Leavy Huber- October 16, 1948 - April 11, 2009

It is with a saddened heart that I report the passing of Eileen. After a trying and restless week, Mom finally fell asleep around 8 o'clock this morning, and is now resting peacefully and pain-free in God's warm embrace. Thank you to everyone for all the cards, flowers, posts, prayers and kind thoughts - they made my Mom's final days happy ones.

TUESDAY, APRIL 7, 2009

Leenie's daily dos.
Tuesday, April 7, 2009

Tuesday, 04/07/09
Dear Friends,Yesterday was a very busy one for Eileen. She just couldn't seem to stop moving - from the bed, to the chair, back to bed, up to commode chair and so on. Her lungs are clear but only because of routine suctioning. Her mind was clear as well. This even though she'd had a respiratory crisis in the middle of the night - probably a large mucous plug that was not suctioned out quickly enough and had pulled out her tracheostomy tube this morning. She has three choices at this juncture:Transfer to ICU and ultimately be placed on a ventillator;Continue to be treated with radiation and a feeding tube in her stomach so that she will not aspirate the food and medicines we give her. However, if, during this phase, there comes a time that she requires a ventilator or CPR, neither will be offered to her. These are her wishes;The third choice is to stop therapy and be discharged on oxygen and Home Health Care Nursing visits every few days.She choses to continue therapy & will have a tube placed in her stomach tomorrow to stop the aspiration of food and meds and give her some strength and will go down to radiation to be re-measured & marked so that treatments can be given with her sitting at a 45 degree angle. She plans to give Henry as many hard, painful shots of radiation as the Lord allows.Sh,e has been flirting with the respiratory therapists, asking one and all for a cigarette and reading prayers to the Blessed Mother. So she is very much here. . . . Lorane , ,
Posted by Lorane at 6:32 PM 0 comments

Update

Hi All,

Brennan, Cousin Phil, Marge, Paul and I all visited Mom this morning and she was in great spirits. She'll be going home to Linbay tomorrow (Tuesday).

In between all the joking around, we were actually able to arrange for "bridge care" (help with the transition from the hospital to home). They'll be setting up Mom with a take-home oxygen tank and PCA (the direct pain reliever, which is working much better than the other stuff we've tried). For precautionary measures she'll also get a wheelchair, hospital bed and a home nurse for monitoring.

We're going back to the hospital in a little bit to smuggle in some outside food, since the hospital grub is pretty bad. Mom did however manage to have sausage, toast and a Wendy's chocolate smoothie this morning!

More news later, as it develops...

~BDH

Hospital Days

Hi,
Actually, I wrote about yesterday and for some reason it was never published (although the blog says I published last on 3/21. Go figure.) So yesterday, I brought her some supplies and, having just come from Patrick's first b-day party, she wanted to hear all about it since she knows all the guests. Physically, she was quite comfortable re: right arm pain b/c they put the pain medicine (Dilaudid) in a portable well attached to tubing that goes to her IV. It has a "joy stick" connected by a tube which she can use to give herself extra pain relief 6 x's each hr if needed. Otherwise it runs continually at a set, effective rate. So Henry's effects - pain - are taken care of. Henry has now wrapped himself around an artery going to ber right arm so she has some hand numbness. Tomorrow, she will resume radiation as an in-patient aimed at eradicating Henry. Meanwhile, she is on oxygen through tubing in her nose so her breathing is comfortable. They are giving her IV antibiotics for the pneumonia demonstrated on the spiral CT and they will get a culture to be certain it is the right antibiotic therapy. She has to stay in the hospital as long as she is getting IV antibiotics. But she enjoyed the pictures I had taken at the party. In fact, I went backwards one picture too many, and asked her who THIS GANG WAS:









She studied it for a long time, smiling. "well, that's MY baby teaching baby Patrick to wave. And it looks like he did a good job , too!" Then her brother brought her candy bars & she dug in while he ate her burger.
We had forgotten to tell them that she takes a liquid, Megase, every morning to stimulate her appetite. Well, she got it today b/c when I called at 10 am, she was in her recliner having a huge breakfast. Take a deep breath, like she is, and pray to St. Theresa - I think she's in charge of pneumonia. Lorane
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Just the facts.

Last night Uncle Phil informed me that, given Mom's fragile condition, it might be best to visit earlier in the week, rather than later. We've made travel plans, which are as follows:

The Hubers, Paul (and potentially Linda) will be flying/driving to Virginia over the next two days. Phil, Brennan, Paul and Brian will fly down tomorrow (Sunday). Tim will drive down from Cleveland on Monday.

Flight Details:

Phil, Paul and Brian

Depart TF Green (Providence): 11:35am
Arrive Norfolk International Airport: 2:58 pm

Brennan

Depart Logan (Boston): 4:20pm
Arrive Norfolk International Airport: 8:54pm

-Brian

It was a frightened Little One. . .

Usually on Fridays I am at Jennie's spending the day watching & playing with little Emma (Peanut). But I had switched our day to Thursday because Friday promised to be quite hectic - I was taking a continuing ed course on line & Leenie didn't have an alternate driver to radiation whereas I was free at 3. . . Friday kept its promise. At around seven, I was saying morning prayers, looked up and saw Leenie standing in the archway of our open door; and then a small voice said, "Lorane, would you please help me to breathe?" So fragile and frightened,this little one. And then we were in her room. . .just sit up against these pillows. . . you took your anxiety pill? That's good. . . . up last night AND the night before? Short of breath , , . . (Remembering yesterday morning,"I'm leaving now. I'll miss you. " "I still have the daffodils from yesterday," she said. "Have fun with Emma . . ." "Phil, keep an eye on her. Something's not right. . ." I heard this keening during the night.")
I paged Dr. Cross. He didn't call right back. "I know you change the patches today. "No pain meds yet? Good. I don't want you to take any. . . They depress breathing . . ." The phone. It was Dr. Cross. . . I'll drive you to Beach General. . .no choice. . .no oxygen."
He called ahead & spoke to the ER attending, gave orders. . . Too slow, hazard lights, horn, passing, passing and in the ER waiting room passing the waiters . . . Finally, she's in bed, shivering, skin warm. . . Pneumonia? Infected Mediport? pent all day searching with microscopes, radiology rays, stethoscopes. Finally, CT says pneumonia and Henry has now wrapped himself around the artery that supplies the R arm & shoulder. , , , More probing and poking.
We bave a working Dx of pneumonia. . .Treat w/ IV antibiotics. Find delicate balance between enough IV pain medication & not so much that breathing too depressed. So Leenie reminds us that Dr. Cross told us Tuesday that things will get worse (from treatment swelling) before they get better And now is the time to beat the clock, the drums, our breasts in prayer. She is comfortable, has a great staff and a ferocious desire to win. It's now, team and Gospeed. . .

HAPPY ST. PADDY'S DAY!

May the Blessings and Luck of the Irish befall one and all today and always! Mom, Nyero, and I are having Corned Beef and Cabbage this evening, everyone is invited to join us!

Enjoy the day! God speed and God Bless!

Love,

Doris, Nyero, & PAL

And the smiles were broad as Tis Himself delivered the youngest. . .

Hi!
When Leenie & I got home from radiation (FIRST time she didn't have pain during) Tim was waiting to greet her and it was the warmest of loving reunions. Then we ordered oh-so-healthy (but MEATLESS) pizzas, settled in on the soft, comfy living rm chairs and enjoyed - everything. There's always the funny reminiscing but now Tim gets into our grandpeeps (their parents have become secondary) & wants to know who's able to do what now. Naturally, Leenie gives the full update. We even whipped out pictures. He brought Mom up to speed on school, work, friends - the Cleveland-2 months-in-review. And then we turned in early (for this bunch) b/c everyone was tired. It's rainy & gloomy & CHILLY outside today but the gang just took Tim to lunch @ doc Phil's new favorite place (something smells like investment) where they do Leenie's corned beef passion some real justice. I'm hiding on our bedroom floor b/c Emma is stirring & hasn't napped long enough yet. We'll keep you 'posted'. . . Lorane

Waiting for Friday

Hi,
It's been a while but we've been very busy. Leenie had a PET scan Monday and we met with Dr. Cross Tuesday to discuss the results. It seems that this cancer responds better to radiation than to chemo. Additionally, Henry's affinity for the exit of cervical nerve # 5 which goes to the shoulder and right arm/hand has become more exaggerated and is causing increasing pain and, therefore, the need for increasing amounts of pain medication. Henry, then, is the total focus. They began the mapping last week and she had her first radiation treatment Tuesday. Phil took her & was furious when after a 10 minute treatment, with very heavy pain meds on board, she emerged at the verge of tears. You can be sure he "handled" the situation. The techs had insisted that she keep her right arm straight at her side and NOT MOVE throughout treatment. This is the most excruciating position. When questioned, they really couldn't provide a reason for this position. When asked, "Do you just WANT your patients to be in pain?" they muttered & fumbled about, finally agreeing to place her arm & hand on a pillow across her chest (semi-flexed) the next time. And indeed, with Phil on hand again Wednesday, she was propped & positioned comfortably. Of course the dosage is very high so there is still discomfort but w/out the added insult od position nerve pain. This morning we went at 8:15 am b/c I have a cervical MRI @ 4 PM. (This time she's coming to hold MY hand.) And tomorrow, the LAST treatment of the wk will be at 3 pm but TIM WILL HAVE ARRIVED @ 1:30 so it will be more like a family outing/reunion. The kids have big plans for the weekend (he'd better pray for rain) and Leenie is just beyond excited. He'll be here until the 17th so we'll be wearin' the green starting tomorrow!
Happy St. Paddy's Day to one and all

test

hi trying to test picture program

It's Wednesday again, in a new-plan-a-day-week. . .

Was hoping to find a clever/funny character to start update but my computer is ill. In a capsule, after doing a CT & PET scan, Dr. Cross was going to begin Cycle II Monday (3/2), hopefully with the same regimen. BUT. Henry became a real pesky problem. Either from inflammation, growth or position, he was causing Leenie intractable pain & had "to go". Dr. Scott Williams saw her MRI for the 1st time Friday & told us that the Cyber Knife (Just a name; NON invasive; no cutting; delivers precisely located radiation) was used only on smical nerve root #5 as it exits the spineall (grape to prune) size masses that are pressing on vital organs. Sooo, in that Henry inside was too lag for that, Dr. Pohar (radiated external Henry away) will perform Intensity Modulated Radiation Therapy - -IMRD - for which a major "plan" is required. Yesterday, Leenie had a simulated CT (not diagnostic) so they could take a myriad of measurements of her body, chest cavity, shoulder, arm, spinal colum and, of course, Henry. Now the engineers, dosologists & docs are feverishly working up a plan - minute by minute - of angles/doses for deliverance of radiation ONLY to Henry - 5 days out of 7 x 4 wks. It is hoped that he will shrink toward his center, thus beginning with pulling away from the spinal column and the irritation of cervical nerve root #5 and alleviating the pain/disfunction in her right arm/hand. But, as Dr. Cross said, malignant metastases don't tend to read medical texts so they don't know the best way to shrin k." If the last remaining tissue is small & still pressing on the nerve root, they could conceiveably use the Cyber Knife technique @ that juncture.
As to chemo, she will have a PET scan Monday & Dr. Cross will see us Tuesday afternoon - late to be sure it's been read - to share his findings, ie, is the disease progressing, stable or retreating. If the last, he will use the same regimen but will have to wait or find a drug LIKE gemsar b/c it can't be administered w/ radiation. The Platinum can but he'll make a call Tuesday re: just waiting until radiation is done & Henry a bad mamory. U nfortunately, these masses don't like being radiated & initially get inflamed, therefore larger. So Leenie will have more pain before she starts to get permanent relief. Dr. Cross has increased her pain meds/patch doses for the duration & she was just so much better yesterday, having slept through the night for the first time in wks. As we were leaving the hospital, they gave her a scrip which indicated that Dr. Pohar will start this Friday 3/6 instead of Monday, 3/9 so they are all working hard to create the plan sooner rather than later as Dr. Cross asked. Meanwhile, her wt & vital signs are stable, appetite is great and if the weather cooperates we'll be working on walks - first to the mail box, then across the sreet, and ultimately down to the point of our next door neighbors. Her cough is becoming more productive and the CAUSE is stasis, ie, sitting in bed reading all day, not more cancer in the lung fields. She's therefore a set-up for pneumonia and Nurse Ratchet says, to quote Jennie's 18 mo.-old Emma, "Nuh, nuh,nuh!". Today we organize the complicated schedules/transportation availabilities of the home-town crew, tomorrow I'll be with Peanut (Emma) while Leenie re-arranges her clothes (finally got bed & Mom's dresser moved so she can use those huge drawers) and Friday we begin. The treatments are uncomfortable b/c she must NOT MOVE or angles change. However, she'll a large part of the Rite Aid Pharmacy on board so we're hoping she sleeps. That's the schedule - TODAY. Could be entirely different after Friday's reaction, PET results, blood work (so far very good) etc. Keep those prayers coming. She will know when she can enjoy/benefit from a visit
Lorane

Update - FINALLY

Hi Everyone,

It's been a very trying 10 days because it's hard to send news when there isn't any - except Leenie's arm & shoulder are very uncomfortable and we're waiting for test & treatment appointments.scheduling

Well, MUCH to Dr. Cross' distress, his person screwed up - twice. He ordered an appt. with the Cyber Knife doc to get rid of the pain. They saw "radiation/oncology" & made an appt. with the doc who did her initial radiology. Then, he ordered the critical CT & PET scan last week so he could see whether the cancer is shrinking on this regimen or Leenie needs different chemo. Of course Cyber Doc can't just aim & fire so a CT showing where the mass tissue is pressing on C5 & causing the pain would have dramatically improved his marksmanship.

Well yesterday his nurse practitioner got in touch with Cyber Doc's nurse who, knowing there had been a delay & protracted pain, fit Leenie in Friday, the 26th. (Of course Friday is the 27th but we'll get that straight in the morning). Then Phil took a call from the PET scan folks and she has an appt. for that on March 9.

That leaves the CT which would be so helpful. We are hoping that will be done tomorrow.

It's also possible that since her only pain is from the compressed nerve, her wt. is stable, she has no new complaints and wants to "get on with it", he'll keep her Monday morning chemo appt and proceed with the same regimen. We'll HAVE to have input on that tomorrow or we'll not know where to go Monday & for what. Sooo, I see a page to Dr. Cross in the cards tomorrow if we don't get updated re: CT &/or Monday's plans. Hope you all had a great Fat Tuesday. Leenie put away a peppered strip steak (med-rare) potatoes & cheesecake with chocolate syrup. Loved it. Will let you know what the next 2 days bring. . . .

Lorane

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Answer to Marge

Hi y'all,







Marge asked about the "mass pushing on C5" b/c she understood that there were no new masses found. That's true. Believe it or not, it's what's left of old Henry. As Dr. Cross explained, there have been many physical/location changes during the Cycle. Leenie is not as active as she had been so there is muscle atrophy on the chest wall and arms. (Although as you see in the picture, she's still leading Patrick with her right arm this past Saturday.) The neck vertebrae have not been rotating/flexing as often/far as before b/c she spends a lot of time reading in bed or napping so her head /neck are usually flexed forward, thus decreasing the intervertebral spaces for extended periods of time. All of these factors "place" things where they "were not located" before. To wit, Henry's outer edge, having shrunken down from the right shoulder, is now abutting the cervical vertebrae, C5 in particular. Dr. Williams will use the cyber knife to remove that tissue & the pressure it is causing. There was also brachial plexus damage during radiation but it will be reversable. So this "surgical modality" is being employed to correct the results of a "furniture re-arrangement in the right claviclular sitting room." We haven't heard from radiology re: CT/PET appts but are hoping they are early next week b/c her next chemo Cycle starts March 2nd. Love to all,
Lorane
,

The LAST day of chemo. . .

Hi!

Been meaning to do an update (I can hear the comments, groans & pejorative mumblings Tim, Brian, Brennan, Phil et al - actually al, I'm sure you are not of the same acrid mind set, & I appreciate that.) But, as you can see, we've been busy. (Phil says the white follow-spot-looking image is his halo which was dragging due to the hour.)

First, I must thank Paul for the Valentine rose. Saturday, the 14th, Tim, was a "rose day". We say a novena to St. Thresa & on the 9th day, if you see a rose unexpectedly, your prayers are granted. We were at Philip & Robyn's house Saturday and it seemed that we were showered with unexpected roses.

Today we rode out to Virginia Oncology in silence. Leenie was hav ing some pain & had NOT brought her pain patch (which was due to be changed @ 3:30) & of course I went off on how foolish it was to presume that both treatment & her visit w/ Dr. Cross would be finished (having begun @ 1:00 but late) by 3:00 so she would be home in time to change the patch. ("NEVER leave home without your pain meds!. . . "HOW could you just assume everything would be on schedule!" and other soothing, helpful comments in that vein)

But. We visited w/Dr. Cross who was pleased w/ her blood work, wt, pain control (up to that point but not to worry, "I'll have the nurse give you some IV Dilaudid during chemo. Is this man heaven-sent or what?), overall tolerance of the effects of Chemo Cycle I and looking forward to doing CT & PET scans NEXT WK - after today's treatment has time to take effect - to determine whether the disease has progressed (new regimen) OR responded nicely w/ shrunken nodes (another cycle w/ same meds). And she will be seen by Dr. Scott Williams, the radiation specialist who performs non-invasive surgery w/ radiation to remove the piece of mass that is pushing on C5 and causing her arm pain. THIS SURGERY HAS NOTHING TO DO WITH THE CANCER IN THAT IT IS NOT A TREATMENT FOR IT. RATHER, IT IS TREATMENT OF A SYMPTOM WHICH HAS CROPPED UP FROM THE ORIGINAL RADIATION & INVOLVES THE NERVES INNERVATING THE ARM & SHOULDER.

Soooo, she had a yummy sub & tea during chemo (after the IV dilaudid) and seems physically comfortable, glad to be finished with chemo and emotionally trepidatious - understandably - but plans to take her anti-anxiety med as prescribed until she has some info next week. (Now, we just take it when we're going to have an MRI or have to think about bills, forms - anything except napping or reading.)

And that's the truth. Lorane

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Happy Valentine's Day!

Good Morning Eileen! All of us here in Connecticut want to wish you a Happy Valentine's Day and send along this rose to brighten your day! The updates on the Blog certainly testify to your ever present strength and courage. We all love you and have you in our prayers every day. Paul Andrew, Doris, & Nyero

p.s. I know you are not particularly fond of the Yankees; howver, Mom just finished Joe Torre's book and claims it was riveting and revealing regarding behind the scenes in major league baseball. She recommends it highly!

Down to the wire minus one

We just returned from chemo day 2 of 3 in the last round of Cycle I. Leenie received Gemsar yesterday, Platinum today & will have IV fluids tomorrow b/c the Platinum really depletes fluids. Her blood work is good so far with adequate white cells and a slightly low red blood cell count. This no doubt contributes to her fatigue. As to the white cells, they are reproducing but the fighting foot soldierws were too depleted for her to attend Mia's baptism in Richmond Sunday. No one there was sick but Patrick had been quarantined @ home w/ a whopping 105 "Leavy" temp, and a molar forcing through on the same side as a nasty ear infection.
So Robyn stayed home w/ him & Daddy Phil brought Declan & Molly AND was selected to do the reading for all 7 candidates. Emma was snatched away in time before diving into the font (swims @ the Y) & Poppy Phil was in charge of the video so Leenie may never see the show.
Margie & Eizabeth arrive SOMETIME Friday for a 3 day visit. We're looking forward to finding out the particulars tonight. As with Kath & the twins, we'll just avoid schedules & focus on quiet, happy chats. (But I know Leenie would enjoy at least ONE disagreement between her 2 older, more mature sibs, yes?)
Then Monday, she'll get her last chemo treatment, see Dr. Cross & meet the radiologist who does that exacting radiographic non-interventional surgery in the event the chemotherapy has not been effectively eradicating the cancer.
So. Here's to a CT that just screams, "GOTCHA!!!",
Lorane
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Optical Delusion?

And the winners are. . .

Hi!

For a minute there, even Leenie looked uncertain. BUT. As you can see in her opening victory dance (NB Bling) there was never any need for concern. It was such a warm, fun, face-stuffing, primal screaming, thirst-quenching night! (And even though Tim said if the Steelers were playing the Taliban, he'd root for the Taliban Sunday morning, he finally pledged to pull for the Steelers - just this once, for Leenie - before hanging up. And Mom said, "It's been a long 24 yrs, Tim, but it was worth the wait!"

And today, we had our appointment with Dr. Cross (schooled @ Ohio State). Thursday's MRI told him that there was not a new mass pushing on the C-5 nerve exit causing Leenie's pain - just pushy old Henry. Sooo, Monday she will start round 3 of Cycle 1 of chemo - Gemsar day 1, Platinum day 2, IV fluids day 3, Gemsar the following Monday (16th) day 4 and that's it. They will take repeat CT's during that week so we can see what the chemo has been doing. If all of the swollen nodes are down, it's Cycle II. If size is questionable, he'll order a PET scan - which shows FUNCTION within the cells - so he'll know if he's looking at mostly fibrous & necrotic matter or active Ca cells. If the latter, we go to a new regimen .

As for Leenie, she feels that the masses will have shrunk. Her weight is good @ 92, her pain is controlled, she's feisty and sleeping less during the day (most days) and she's actually taking her medicine as instructed.

So then, yesterday the Steelers, today the MRI results - both winners and both starring our favorite (at times loudest) Leading Lady. Cheers!

Lorane

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I would like to draw attention to the State Bird of Ohio....









HAPPY SUPER SUNDAY!!

X-TREE, X-TREE. Read all about it-Bloggers Return!

Well,
Eileen had had an unusually busy day yesterday. She insisted on doing several loads of laundary (& folding mine, bringing it up & putting it away). I was working on calenders for Dad & Eileen's schedules so I wasn't watching her too closely. We had slept a bit late but once up, she was eating & doing & phoning. She was also noticing a large amount of hair loss suddenly so I did some research & we selected a short wig, styled & colored like her hair Then I made a pork roast & she couldn't wait for the Doc to get home so she could eat b /c it smelled soooo good. (Very unusual). She ate well & chatted for quite some time w/ Phil so she was tired when she went to bed. (I've never seen her so active since she arrived 11/17).
This morning, our question list made for Dr. Cross - her big one "Do you think I'm going to beat this thing?" - we were ready for the appt so when she wasn't getting up, I let her sleep in. Meanwhile, I ordered the wig & accessories & got Phil's calender posted & current on the fridge (He said he thought it was Eileen's calender) We put the wreath & elf away & all of a sudden it was 11:30 & our appt was @ 1:00! I got her up, got a shower while she downed some Boost, she got showered & dressed & we were there a fashionably 10 minutes late. She had her blood drawn, weighed in @ 93 lbs on their scale (91 last weigh-in) & we waited for Dr. Cross in the treatment room. She was uncomfortable - had awakened during the night w/ pain in her R arm, R shoulder, R scapula & across the midline of her back to the L scapula area (where Henry, Jr. had been - he's since disappeared) But she had to take 2 Vicodin which is probably why she slept in.
Anyway, Dr. Cross asked lots of questions re: her reactions to treatment, energy, pain , location, any edema, new pain sites plus appetite & eating regimen. Then it was her her turn. She asked about hair loss. He said he was surprised b/c this combo of drugs doesn't usually cause loss of hair - except in the presence of general malnutrition, especially protein deficiency. So she had to fess up re: her treatment of Boost as meals, not supplements, & promised to eat more meals - like the pork roast last nite. But. He seemed genuinely happy that her wt. had gone UP b/c he had expected a drop from post chemo nausea & diarrhea. (Of course, he had covered that w/ a new anti-nausea drug given w/ the chemo so she's had NO nausea or diarrhea.)
Then she asked (after telling him how wonderful & efficient the care was Saturday @ Va. Oncology) whether she could make that her home base & have her treatments on Tues., Wed., & Thurs. w/ Bld work on Monday. He said, "SURE! and we can draw your blood Tuesday - I get the results right away & can change your dosage if necessary." We were @ Beach Gen. from noon until 9 PM Thursday & she was there from 8:30 AM until 6:30 PM Friday.Saturday, her fluid treatment was started @ 1:15 & finished @ 3:15. Her NEW schedule for the last round of round 2 is Gemzar x 1, ie, Wednesday, and NO IV fluids b/c no Carboplatin)(platinum)(got it last wk), then )her week off
So, let's follow along: Leenie is on a 3 wk (21 day) regimen of chemo. She only gets platinum once. So wk 1, Day 1 (Tuesday) = Gemzar; Day 2 (Wednesday) = Carboplatin - platinum, which depletes fluid - and Day 3 (Thursday) IV fluids. Day 4 is the following Tuesday, when she gets only Gemzar & therefore does not need IV fluids or a "day 5". The following week is her week off. In this case, at the conclusion of cycle 2 (2 wks of chemo; 1 wk off (21 days), she will have the CT's & x-rays of the neck, thorax (lungs) and C-spine, if indicated.
This last evaluation was sparked by the persistence/exacerbation of pain in R arm, now radiating to mid-back @ scapula level and the to L scapula area. Dr. Cross said the cause of this pain pattern can be 1) the radiation treatment which damaged the R brachial plexus nerves OR 2) pathology in the Cervical spine at the neck level such that the exit holes for the nerves leaving the spinal column & going out to supply the R & L shoulders & arms are being pressured by a cancer metastatic node causing interruption/aberrant signals to the muscles of both arms & shoulder areas. If this is the case, those cancer nodes must be eradicated so that nerve supply is normal again. Dr. Cross has ordered an MRI of the C-Spine to be done this Thursday @ Beach General so that he will have the results on Monday, 02/02, her next office visit.
Her White Blood Count (WBC) went from an initial 2.1 (very low) to 5.1 (very good) this wk and her Hemoglobin was 35 and Hematocrit 10 (low, but OK red blood cell count.) Don't know today's results.
When Leenie asked him how he thought she "was doing" - a toughy -, he said, "Really well. You haven't had any ill effects from the chemo; your weight is going up; you seem less tired. I'm very pleased." Eileen responded, "That makes me feel GREAT!" to which Dr. Cross did his shy smile. Then she asked, in that she's been taking all these pills, but not THE pill, could she be pregnant, and dear Dr. Cross, blushed & finally laughed, saying, "Anything's possible!"
She was flying - & craving a corned beef sandwich. So we went to "No Frills Grill", she chowed down, came home & took a nap & is contentedly reading.
And that's the truth. . . .
Lorane

PS: These words will have to be worth 1,000 pictures b/c I'm too pooped to mess w/ it.

,

Wednesday - 01/21/09 - much ado about nothing, save sleep deprivation

Up @ 5:30 to wait for the call telling us to go to Norfolk or Virginia Beach General for 3 hours of Gemzar Infusion plus IV fluids. And at

10 AM a frazzled Marylyn called to say, "I guess Wednesday is a very busy day." Sooo busy that Leenie will have to wait until tomorrow. Also Dr. Cross has changed the regimen from Gemzar on day 1 and Platinum on day 2 to Gemzar days 1, 2, 3, 4, and 5 and Platinum ONLY on day 6 of week 3. Apparently her blood work indicated that she responds better to Gemzar and he is quite convin ced that the Primary is lung for which Gemzar is the best bullet, Platinum attacking pancreatic more effectively. The dosage will be higher (if bld work permits) and the side effects less severe. So tomorrow & Friday = Gemzar & Saturday is IV fluids. Naturally, the disappointment was palpable all day and for toppers she was having increased pain on the Right rear shoulder. She DID eat well and rest with a little help from chemistry.

So here's to tomorrow and the 0utfi t that will become de rigueur in every Infusion Department in the country!

,

Move Update

As expected, last weeks temperatures. were too low to move. Friday was the coldest day in Cleveland in 15 years, 13 below zero. We will be moving this weekend and I decided to go with a 10x15 locker. . Its going to come to $133/mo including insurance and tax, not too bad compared to other prices I looked at.

I'm still having trouble with the post-office and forwarding the mail. I filled out the change-of-address form and I am still receiving mail. I'll be going to the post-office Friday morning to straighten it out (hopefully the "change" the new president promised has motivated the postal workers to "change" their work ethic and attitude. I won't hold my breath)

Mom, it might help speed up the mail process if you contact the important people- Board of Education, Credit Card Company, The hospitals, etc. and have them change your address. I'll keep working on the union workers up here and see if I can get any help from them.

I hope the visitors over the weekend lifted your spirits! Please let us know how today's chemo treatment went.

Go Cardinals!

Tuesday - 01/20/09

There is the cutest pic of Leenie in these absurd pink clarabelle slippers . . .
But since it's late & I can't upload it, I'll just say the visit was fun, hectic and crowded with funny little people wanting to play with everything/body showing NO interest in the Steeler game.
Tomorrow, Leenie begins round 2. (She went from 88 to 91 lbs during the festivities!). She had blood work done today. Tomorrow, she will hav3 a 3 hr. infusion of Gemzar & IV fluids; Thursday, the Platinum & IV fluids & Friday IV fluids.
She is not as tired but this session will take its toll. I'll be force-feeding & generally bitching @ her b/c nutrition is her only armor.
She enjoyed the inauguration today but is tense about the chemo session so boot those prayers up. It's freezing and grey which really gets her down but I keep telling her it's great weather for lots ofr hot "Boost" & long, cozy naps with Bridie whose job is to warm Leenie's feet & negotiate a few potato chips.
Soooo sorry about the font color - must have had sun /hapiness on my mind - "burning", Brian? (By the the by, Bri, Molly called 2 days ago wanting to know if B-r-i-a-n was here. . .)
And Tim, great job with the sale. I guess you sold the heater separately b/c Uncle Phil just had to buy one for our dryer. "and the plane crashes. Then nobody wins. . ." Forget you wrote that, Tim. I'm trying to.
L
,

Wednesday - 01/14/09

Hey,
Quiet day. Leenie's intake - fluids & solids - continues to be good. So good that she refused to weigh in this morning, as promised, b/c she was eating (& talking snippily with food in her mouth). She really seems to be getting better. The mass on her left scapula is now GONE. Very pleased about that.
She rested, read & got her room in order while I had STEELERS' gold highlights put in my hair. Quiet evening, making possible/changeable plans for the weekend visit of Kath & the twins. Emotions are running high - hell, what isn't these days - but I trust the rewards will be commensurate. . .
Lorane
,

Update on the Move

-Queen Size Mattress.......................................................$75
-Queen Size Box-Spring w/ Frame
(sold separately from mattress).....................................$40
-Chevy Lumina w/ 155,000 miles, No
Heat, Poor Tires, an Oldsmobile Steering Column,
Broken Locks, a smoking engine that has
been sitting in below freezing temps for 6 weeks.........$200
-Watching two Spanish guys named
Ricardo and Alex spend 45 minutes getting
the frozen Chevy Lumina to start...................................Priceless.


Sunday was packing day and with the Help of Betsy, Linda and Zubin, we were able to finish wrapping, boxing, and organizing all the contents of Mom's Apt. Most everything was placed in boxes and prepared for the move. With the help of Craigslist, I was able to acquire some extra moving cash by selling the above items. Still have a couch and entertainment center posted and I am accepting offers. You wouldn't believe the amount of phone calls I received on just the car alone. And, I'm sorry to inform Aunt Lorane and Uncle Phil, you were the last two to use the queen size bed as a whole, the parts were sold separately.

The move, which was originally going to happen this past weekend was moved to next weekend. Unfortunately, the Cleveland weather forecast is calling for single digit temperatures with negative wind chill temps all weekend. Needless to say, the move might get bumped back another week (sorry landlord) unless my small army and I muster up the courage to brave the frigid temps. (nothing a few shots of whiskey can't handle). Either way, the packing is done and all is ready to be moved.

I plan to rent a U-Haul of the 16-17 foot variety which should accomodate all of Mom's belongings in one trip. We will be storing it all, with the exception of some clothes, the china, silver, crystal, a few paintings, and two mirrors, in a storage facility near-by (still needs to be reserved). I'm going to guess that with the number of guys that volunteered (hopefully they show) to help and the first-floor layout of Mom's Apt, the move shouldn't take too long. That is all for now--back to torts, contracts, legal writing, and criminal law.


Tim H

Mom's New Email Address

Eileenhuber@gmail.com

01/12/09 - Monday

Well, well,

It started slowly, this day. Lots of ennui,en we sat. And sat. Shopped upstairs for snacks. Started to get irritable listlessness, frenzy re: unfinished calender for Dr. Cross.

But. Suddenly it was time to leave for the 2 PM progress appt. Calender still not done (to our satisfaction) so notes made re: info he might need; symptoms occurring during this "first round of chemo". (Runs 2 out of 3 wks so she's off this wk)

We were on time; Leenie signed in @ 2:05 PM. Then we sat. And sat. And went uptstairs shopping for snacks. One hr. & 45 min. later, Leenie approached the crackerjack receptionist, reminded her that she signed in for a scheduled appt. w/ Dr. Cross @ 2: 05 PM and what the Hell!!

OOOPs. Lots of scurrying; what's her name? Doctor who?
Did she sign in? etc.

Then a frenzied worker bee escorted us to Dr. Cross' examining area, muttering the while about checking the shedder, caqlling ahead to Dr. Cross, etc. . .

And Leenie announces as a tata to the waiting room, "I don't think I heard an apology, did you?" We were ushered right in to the examining rm ("You've been sitting too long!") Soon Dr. Cross came in, apologized for Leenie's incarceration in "Reception" and got down to the business of how she is doing.

He's not a cartwheel kind of guy, but in his measured, dolcit tones he allowed as how,she hadn't had any bad, untoward effects from the chemo, her blood work was fine (what one expects) she seemed less lethargic (she is) and his plan was to start round 2 next week. The mass on he left scapula was smaller so the disease = not progressing and she has no nesw symptoms. The only pain is in her right arm (wakes her up from sleep) which is from tbhe radiation of the lg mass which also destroyed the brachial plexus in that arm.

He answered questions (she'll have her blood work the afternoon before chemo AT VIRGINIA BEACH GENERAL - WALKABLE - AND HER THERAPY THERE AS WELL WHICH IS GREAT BECAUSE IF THE STRONGER, 2 DRUG TREATMENT HITS HARD, SHE'S CLOSE TO HOME)

"Please call me ANY time for ANY thing. I'll see you next week. . ."

Se was tired but took a short nap. Then went to the computer, changed her email address, prin ted out her contacts & cancelled her phone.

She's back and hungry b/c then she had a nice portion of blackened chicken Alfredo to complement the 1070 cc's (almost 2 liters) of fluid she had already had today.

Lookin' good . . .

Lorane

,

Sunday, 01/11/09 ?

My, My,
We've been too busy to report.
Friday, Leenie stayed home & finally got Dr. Cross' nurse. We have an appt. with him Monday - tomorrow! & we still haven'tdone our daily report calender! - we guess to discuss the treatment schedule , answer questions & seek advice.
Later in the day,Phil , on his way to work, brought Leenie over to Jen's to play with Emma. She had been really full of herself all day (all week, I'm told). Friday she only spoke Chinese but she was very helpful in preparing her luncheon for all of the family/friend kids on the fridge. She even cleaned up afterwards b/c I was taking pictures. When Leenie got there, they were both fresh from a nap & the Peanut proudly showed Leenie her "new" playroom - entire den. Leenie was most impressed w/ a ? 2.5 ft. square "tent" with activities on the inside & out on each wall. The degree of difficulty re: placing Elmo-eyes balls into all manner of slots/holes increases & we are at base 1. But we LOVE to sneak into the tent & hide (of course she can be seen but soesn't seem to realize this) Jennie used to play under tables - where's Jennie??? Giggles x 5 minutes until, "THERE she is!" Peanut does the same routine so it was a perfect game for Leenie. Personally I think she wants one of her own - especially the wall involving keys in different geometric shapes & colors necessary to open the round door to retrieve the ball. Lots of laughs there.
We got Chinese (somehow we were in the mood) on the way home & were in pig heaven.
Saturday, we slept late but designed the daily schedule. Great design. Then we read, did laundry, discussed food changes and sent brother Phil to Sam's for special requests. Phil & I went to 5:30 mass & brought Leenie the Eucharist. While we were gone, she had a nice chat w/ Phil Topping. Then they watched basketball & Bridie & I groomed & got the crib ready for Patrick b/c I think Philip is coming over to watch the Steeler game. We're doing Brats & meatball, sandwiches. I want to see If I can get the brats black with the "golden" rolls. Or maybe not. We'll let you know how our visit w/ Dr. Cross goes. . .
Lorane
,

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
,

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
,

Sunday

***************************************************************************************

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

,

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

,