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

,