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

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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
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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!