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Bill's Five-Year Survival Story Updated April 1, 2010


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This is Bill's story - updated April 1, 2010.

Bill joined the US Marine Corps, at age 17 and while in there, the Korean War broke out (was entitled the Korean Situation at the time and Bill gave 4 year's honorable service), a NY City Firefighter for 22 years, and a Verizon Installer for 18 years (began climbing telephone poles in Bergen County at age 49). He retired in 1996. Five years later, the medical story began. Bill had no prior history for any surgeries, sickness, or anything of that nature.

Bill and I met for the first time in May 1954, although having lived in the same neighborhood for many years in the Bronx, and belonged to the same parish. (He had been in the Marines while I was in high school.) We married September 17, 1955, and are the parents of four children with whom we were blessed by adoption. They have been the great gifts of our lives.

Life has been very good to us. :D

Medical Story:

In 2001 Bill was diagnosed with colon cancer at age 71.

He had gone for his second colonoscopy (interval of about a year since his previous one). A flat polyp (BTW, not a regular polyp) was found. The doctor removed some of it for a biopsy. He didn't want to remove the entire thing because it was flat against the colon wall and he was concerned about cutting through the wall.

That biopsy came back negative for malignancy. However, the doctor ordered the rest of the polyp to be removed through a resection.

A resection of the colon was performed (cutting away a section). The biopsy came back positive for cancer - Stage 1 d. It had not penetrated the wall.

2004

It was a tickle cough of an ahem sort of thing. It didn't sound like anything of substance - just a "tickle" in his throat - annoying him more than anything else.

We went to the GP, who referred him to a well-known pulmonologist. His assessment was that after two digital x rays, breathing tests, and others, Bill was OK - nothing found.

This doctor suggested that we go search for GERD.

In the meanwhile, I was diagnosed with TIA (mini stroke) and when I came home from surgery, Bill, who was still coughing, visited our GP once again.

This time, his young doctor-in-training (a young woman from Israel) asked if Bill should have a CT scan. May God bless her in her vocation always.

The journey began.

Medications and Regimens:

Bill, diagnosed at age 74 in December 2004.

Diagnosis: Lung Cancer, Adenocarcinoma, Stage IIIB - inoperable due to location. (Just recently discovered that it wasn't the "location." It was the number of lymph-node involvement. If we keep talking to doctors along the way we discover all sorts of things.) It is important to keep asking questions. Advice to newbies: When they say inoperable, get a second opinion.

2005

Jan. 3, 2005 - Feb. 25, 2005 - Aggressive regimen, Concurrent: Radiation w/carboplatin and taxol - aggressive, 7-wk regimen with resulting scans showing 50% shrinkage of tumor and nodes.

Sept. 8, 2005 - Swollen gland in neck checked

Sept. 13, '05 - CT scan of neck

Sept. 14, '05 - Chest X-ray

Sept. 28, '05 - Biopsy of neck nodule/positive

New Stage IIIB-IV

2006

Oct. '05 - Jan. '06 Gemzar/carboplatin regimen

Jan. 12, '06 - Scans determine results stable - except neck nodule

Oncologist changed regimen to Alimta

Jan. 2006 -Alimta

March 2006 - CT Scan - Alimta working neck nodule had shrunk in less than ten days after first infusion

July 2006 - Scans show shrinkage, Alimta still working

As of October 2006 Continuing with Alimta - Bill has received 12th infusion.

Results of CT scans of abdomen and pelvis (ordered by urologist concerned about kidney cysts found two years ago). Nothing of concern in any organs.

November 14, 2006 - Alimta infusion #13

December 12, 2006 - Alimta #14

Shoulder has been painful. MRI ordered w/wo contrast for closer look at that area December 18.

Dec. 16-27 MRI results show possible tearing in shoulder, a mass is seen, and another scan is suggested for additional look due to "history." Scan taken by Radiation Oncologist.

2007

Alimta #15 - Appt. Thursday, Jan. 11, 2007, cancelled due to shoulder problem.

Jan. 11, 2007 - Two bone mets (one was mentioned over a year ago, but "disappeared" on subsequent CT scans) to receive radiation tx over 15 sessions to lessen/eliminate pain in shoulder.

Jan. 17 - PM - Begin rad. tx.

Jan. 25 -PM Will be changing positioning for effective continuance of radiation, so as not to damage nerves in arm.

Still experiencing pain in shoulder, taking Advil every 4-6 hours.

February 13, 2007 - Last Radiation Tx tonight. Had 20 in all. No pain, discomfort. All feels OK.

February 19 - Fatigue ending - energy level rising.

February 20 - Scans scheduled, depending on results, chemotherapy break for three months.

February 27 CT Scans Taken. February 28 call from oncologist's office - appointment tomorrow for follow up.

March 1, 2007 - Chest CT scan fine, Neck CT Scan shows neck node growing. PET taken. After PET scan, we will confer with oncologist to determine what course to take.

Received PET scan in the mail. No further mets anywhere else .

March 15, 2007 - Met w/radiation oncologist. He conferred w/chemotherapy oncologist. The PET shows ONLY the bone met worked upon, and the neck nodule. Scheduled to radiate neck nodule. Everything else is OK.

March 19/07 - Appointment with chemotherapy oncologist - blood work.

March 20/07 Began plan and was mapped.

March 21/07 X Ray and first treatment tonight late evening.

March 30/07 More than 1/2 way through rd txs. X Rays taken yesterday. Doing well, eating well, fatigue, but resting at those times. 4/11 - Doctor adding five more to treatments. Good to go. Will have 20 completed next week.

April 18, 2007 - Bill was set up & planned out for 5 more rad txs (straight on).

April 25, 2007 - Competed Rad Txs (20 to shoulder, 20+5 to neck). Feeling well.

May 25, 2007 - Followup visit to Radiation Oncologist. Bill told him of a "movement in muscle" which has occurred several times in left wing of back. Doctor said it could be involuntary message, so ordered CT scan of brain for May 30.

May 30 - Results of CT scan of brain: A solitary met in mid brain. Discussion resulted in WBR prescribed for a month. If met is not obliterated then, cyberknife/directed radiation treatment.

May 31 - WBR treatment.

June 11, 2007 - Bill has completed his 8th WBR tx.

He began with 3 steroid tablets a day, but the dosage has been gradually lessened to one.

He will be having 20 treatments in all.

June 25 - Decadron over and done. Last 3 rad txs (total 20) will be completed June 27.

June 27 - Last treatment today #20. Will visit doctor (radiation/oncologist) for observation and vital stats.

June 28 - Post tx visit in one month.

July 6, 2007 - Bill is feeling very well.

July 23, 2007 - Stuffy ear feeling faded.

July 26, 2007 - There was an "uptake" on the right side of the neck.

One was in conjunction with the CT scan. A couple of others were too small, or undetermined as to what they were.

Appt. next week for scan to see how the WBR worked. Next appt. for oncologist will be in 8 weeks.

August - Still on a chemo break.

September 20 - Discussed results of early CT Scan - Significant reduction of nodule in mid brain. Further shrinkage expected.

Next Brain CT Scan October 8. Also, CT scan w/contrast of neck and chest. If shrinkage of brain nodule continues there may be no need for directed radiation, but if not - then we will go for that procedure. Hoping for job being done through continued shrinkage.

Bill continues to be "a bit tired," and Is eating well, but not in the mood to eat - has lost famous appetite. But, he doesn't allow himself to skip a meal - even though it takes longer to finish - very long.

Keeps very active, but takes naps when needed. He has lost 8 lbs. since beginning of radiation. He was 180 lbs. - now 172 lbs.

Oncologist said that if there is no growth on scans we will not attack, but if there is, we will. Still on chemo break.

October 8 CT Scan of brain shows fluid, appt. October 9, to see Neurosurgeon to assess significance of finding. He told us that we would watch it because it was a narrow ribbon on the periphery of the brain. Most likely, it would disappear on its own. No symptoms.

Nov. 8 CT Scan of brain, office of Neurosurgeon called to make an appointment for November 19. Bill feels fine. Has been active, takes a nap if he needs, is still spending time outdoors, raking, etc. - but pacing himself.

November 19 - Good report on (what was called "fluid" on first visit is now being referred to as blood) . Anyway, it's down to a minute sliver and will be followed next month to assess once again. Asked neurosurgeon when it might disappear altogether (ballpark estimate). He said, "Three months." Thankfully it is shrinking.

December 26, 2007 - Visited the neurosurgeon for liquid/blood issue in brain. On this last CT Scan, that area had increased slightly.

Three options: Continued watching and do nothing yet

give Decadron for three weeks and see what that can do. If it doesn't work, go in and do surgery.

The last option is to go in and do surgery now.

Asked the doctor if it were his brain which would he choose. He said, "I would choose Number 2. Take meds and see if that could resolved it." We concur.

2008

January 3. 2008 - Had CT Scan of Neck/Chest. Dr.'s office called and said OK, but wanted PET as Gold Standard (also it has been six months from last PET).

January 10 - PET Scan Today.

On January 15 - Bill will be having a CT of brain to determine if the narrow ribbon of fluid/blood on left outer periphery of brain has diminished with the use of the (steroid) Decadron. Otherwise, Bill is feeling very well.

January 17 - Neurosurgeon called and said that Bill does not need to see him further (unless he should have an untoward symptom) because the "ribbon" of fluid is now minuscule. The decadron worked.

January 21 - Visit to oncologist to discuss PET scan taken after CT scan of neck and chest. Will report back here after discussion.

OK, here it is: Growth in neck area left side and rear, and new growth (small) in lung (all other organs NO uptake).

January 28, Chemo regimen: Avastin/taxol/carboplatin

Neupogen 6x

February 18, 2008. 2nd Infusion Avastin/Taxol/Carbo. Doing well.

Neupogen 6x

March 6, 2008: CT w/Contrast Neck and Chest to assess effectiveness of regimen.

March 11 - Visit to oncologist, read CT results, shrinkage, going forward with third round.

April 10 - MRI of brain to assess brain tumor.

Results of MRI - Brain tumor gone - No sign of it.

Continued with Carboplatin/taxol/Avastin through May 26 - altogether six infusions. Had Neupogen when WBC were down. Reduced to 4x following each last couple infusions.

Plan: See oncologist in one month, and order scans to assess effectiveness of regimen. If there is "movement" doctor will move on it, as well.

Bill enjoying hiatus, and is actively engaged in activities each day. Looks good. :)

June 27 - We went over to the Imaging Center and Bill had three Ct's taken. Head (CT taken to assess ribbon of fluid on periphery of brain), Chest, and Neck.

We will be receiving copies soon. If there is a good report (meaning no growth) we have been set up for another set in three months. Appointment already made for them.

Otherwise, we will move as indicated by what yesterday's scans tell us. Waiting....

Yesterday, June 27, 2008, was the one-year anniversary of Bill's ending of 20 WBR treatments.

He is presently outside weeding the garden. Side effect remains very minimal - short term memory once in a while - seems to be lessening. He loves to solve card games we have stored on our computer.

He keeps his brain in use - he had to straighten out the checkbook which I messed up last month. :oops:

July 1 - Same day as brother's demise, doctor's office called with scan results. Everything OK (stable), and improvement in neck and in chest, except questionable enlargement of something in kidney. Setting up appointment for sonogram of that area. Oh well.....we take the good with the not-so-good.

July 10 - Bill went for sonogram of kidney. We will know in a day or so. I don't know what to think, so am thinking prayers.

July 17 - Called Imaging Center because report had not arrived in mail.

July 18 - Received report in the mail. All is OK. Kidneys have same cysts and nothing new to report. Prayers answered. Thank you, God.

September 10, 2008: Bill has been on a chemo break since he was determined to be in remission.

Scheduled CT Scans for September 17 (coincidentally our 53rd wedding anniversary) and are hoping all will be well.

September 24, 2008 - Saw oncologist and went over various aspects of scans. We had received results of scans taken on September 17 and read that there was a "mixed bag" of things - some stable, brain NED, and neck nodules growing. Some tiny specks on liver - too small to assess.

The oncologist explained the areas: Brain was clear, except for the "ribbon of fluid" on the right periphery (but stable). The chest had a nodule that many or may not be growing - BUT, keeping an eye. Liver was determined to be what is often seen but not cancer.

The doctor ordered more scans (this time, including pelvic area) in 9 weeks and to see him in 10 weeks. In the meanwhile, he is looking into a clinical trial, something new, that if Bill qualifies, might be a plan. They will call and let us know. He thought Bill was up for it. The only impediment would be seeing if the amount of former regimens might disqualify him. Here's hoping.

October 12, 2008, Bill went to the ER with coughing and spitting up blood. CT scans taken, including X Rays. Nothing untoward (no evidence of clots or other) found to cause bleeding. Sent home with prescriptions for antibiotics, cough pills, and an inhaler.

October 27, Bill did a lot of yard work. Following his return to the house, had another bout with coughing with bleeding. Had not had such since hospital ER visit. He recalled that he had done yard work prior to ER on October 12.

Called oncologist for appointment. Nurse called back and said that doing work in the colder weather, then the dry heat in the house both may have contributed to the coughing bouts, including some bleeding. He has compromised lungs - lots of scar tissue.

She suggested making appointment with both the pulmonologist, and the oncologist this week. Appointments scheduled.

Bill has been using the pills three times a day and the inhalator every 4 hours, as needed. He has been sleeping well, eating well, and looks fine. Coughing brought down to minimum with meds. He won't be working outside. Time to call a halt to that. He is OK with that.

November 5, 2008 - Visit to oncologist. He compared scans taken in ER to previous CT scans taken September 17, 2008. There was a slight growth in a nodule on lung, but he wasn't sure that it wasn't an infection. Future Scans in December will tell more.

(He gave Bill the name of a podiatrist [the one he uses himself] for foot problems Bill has been having with calluses and the like.)

November 6, 2008 - Visit to the pulmonologist. The original doctor who diagnosed Bill at that office was on vacation, so we saw another. He was very helpful. He told Bill about an OTC (over-the-counter) med that worked without being narcotic, and we made an appointment for a breathing test for Bill.

November 13 - Breathing test came back as being slightly below par for age and situation. Pulmonologist gave Bill two prescriptions: one was for ProAir (albuterol sulfate), and the other was for SPIRIVA.

The SPIRIVA is to be taken daily continually, and the ProAir is for use "as needed."

He told Bill that he may continue doing the yard work, but to put a brake on how long he is out there doing it.

November 17, 2008 - So far, Bill has been doing very nicely on the SPIRIVA.

An aside: My thoughts go to the future CT scan in December. I guess it is difficult not to read something into "growth" words. In the meanwhile, we will keep enjoying.

(I had an episode with bladder 3 days ago [with blood] - scared the bejeebers out of me) and was put on antibiotic. Am having heavy back pain on right side.

November 26, 2008 - Subsequent visits to GP, Radiology CT Scanning, and urine ananlysis, prove to be positive for a kidney stone in kidney, but no evidence of bladder cancer. However, an abdominal aneurysm was discovered to be 4.0 cm in size and requires follow-up this March by sonogram by vascular surgeon. Referred to urologist for follow-up on kidney stone.

November 26 - Bill went for CT Scans of neck/chest/pelvic areas. He has a scheduled visit to oncologist on December 3, 2008.

December 3, 2008 - Oncologist confirmed that there is growth in neck nodules and will be setting up treatment for Bill.

We asked about a clinical Trial that he had formerly mentioned. He gave us papers for that. Questions need to be asked about the trial.

If Bill is not accepted as a candidate (a possibility), or decides not to enter the trial the oncologist will set up either Navelbine, or Taxotere.

I will ask questions at Lungevity about all viable options. (He said that Navelbine has fewer side effects.)

December 5 - We received a phone call from the oncologist's assistant. Bill was not accepted for the clinical trial (Tarceva and the testing drug).

However, the oncologist gave Bill a prescription for Tarceva, which he will most probably begin today. I called the oncologist's office to say when he would begin, and gathered much info from member's so helpful in letting us know what to do about any side effects should they occur. Here's to good luck. Any prayers will be very appreciated.

December 17, 2008 - Tarceva has been giving Bill a facial/neck and chest/back rash. It began on the 6th day. Creams and lotions recommended have been very helpful. One bout with diarrhea, but no recurrence. He took 2 immodium for it, and that issue has been "normal" since then.

Neck nodule down and not visible anymore. Can feel it slightly when trying to assess size - very small. What does that mean? We don't know. Bill has been taking Tarceva since December 5, 2008.

December 31 - Called oncologist's office at Cancer Center and asked if, at some point, he would like to check Bill. We hava an appointment the first week of January. His nurse assistant said that the doctor would like to talk about adding Navelbine to the Tarceva.

So far, the neck nodule is difficult to "feel." I know where to look for it, and I am having trouble finding it. I am sure it is there - somewhere and somewhat smaller. :D

Will update as we experience any additional chemo.

2009

January 7, 2009 - Visit to oncologist. Doctor sees neck and assesses Bill's blood work. Checked body for rash and gave a lesser prescription of 100 mg in case it gets worse.

Decided to wave Navelbine (for the time being) in lieu of taking Tarceva to see what it can do by itself. Scheduled CT scans in 3 weeks. Visit him in 4 weeks.

January 9, 2009 - Still on 150 mg pill daily. Rash is lessening - much calmer in appearance on face and neck. Bill feels well, and doing fine.

January 23, 2009 - Bill continues on the 150 mg pill of Tarceva daily. He is active, eats very well, has snacks, holding onto weight, disposition getting more pleasant, and has energy enough to help with mopping/cleaning basement, shovelling snow, and has upbeat attitude. Keeps to taking daily nap (important).

There is only one reason for my posting Bill's updates. That is to relate to all those who need hope to know that Bill has been through many regimens, taken what has been given to him, and has survived in a dignified position. It has not been easy, but it has been "quality of life." He has conquered the idea that cancer is a death sentence. So far, it has been life and life enjoyed, for the most part.

January 29, 2009 - Went for neck scan. Will be seeing the oncologist next week to discuss results and dosage regarding Tarceva. Bought 100% cocoa butter today to see if it might help with the rash. The rash has been extremely itchy recently.

February 4, 2009 - Visit to oncologist to assess CT scans of head/neck. Tarceva working. Nodules in neck have greatly diminished, and indicate a good response. :D

Brain fluid from over 1-1/2 years ago has increased 3mm. Watch and wait. So far, no symptoms.

Dosage of 150mg Tarceva being cut down (one whole pill/one-half pill regimen) every other day. When pills from this month come to an end, Bill will be going to 100mg.

February 14, Valentine's Day: The rash had toned down nicely yesterday, and Bill went for a haircut. He came home looking quite handsome in his new "do." :D He gave me a very beautiful Valentine's card (which I opened a few minutes ago), and the wording has brought me to tears. I needed happy tears.

Went for checkup March 3, 2009 - Bloodwork done. All appears OK. Doctor checked Bill's neck nodes - still not visible. Next appointment on March 31.

Bill had been taking on whole pill one day/one-half pill the next. Now, Beginning 100mg pill with new presecription.

Rash is there on back, arms, and a little on the face, but it has been tolerable. He feels well, except a bit tired for a part of the day, but is active and gets things done. He looks very well - good coloring, and eats up a storm.

March 20 - The First Day of Spring - Yesterday, for the very first time, I noticed the node in Bill's neck is appearing a bit raised once again. I do not know what it means, but it may mean that the Tarceva has stopped being effective.

Our visit will be in a little more than a week, so we will address this with the oncologist. He had mentioned an alternative plan - that of Navelbine. We will know more on March 31.

March 31, 2009, realizing we are going with a grown nodule in neck. Showed Dr. Pascal the swollen gland/node, and the fact that Bill's shoulder/scapular is becoming an issue (not pain)but with having sluggishness to right arm.

He assessed the problems, said to get scans, stop Tarceva, and come back in one week. Appointment for April 7, 2009.

Bill's right toe was infected due to his trying to clip the large toenail. Warning to others - do NOT clip toenails when there is a problem with even slight neuropathy in feet.

Doctor sent us immediately (right after our visit) to his very own foot doctor.

We went, and the issue was addressed with surgery (part of toenail removed). Now, bathing it twice a day in one teaspoon of salt in warm water, and no antibiotic needed.

Will report more as we discover what we will be following as to any further chemotherapy.

April 6, 2009, We are going for a "follow up" to the good doctor, Dr. Rosen (chiropodist), and hopefully, a nail clipping (nails are beginning to look really imposing). The infection is no longer in sight/I am betting the concern may be over in the infection department.

Tomorrow, April 7, 2009, going to oncologist for explanation and assessment of CT scans taken. Also, discussion on what type of chemo treatment to be applied.

Foot back to normal, no sign of infection. The surgery having the toenail partially removed was a complete success.

The CT scans of neck and chest turned out pretty good. The lungs have not shown any progression - all is stable since September of 2008. Neck nodule has grown substantially (twice the original size). Doctor wants to seek out RFA (radiofrequency ablation) for that.

Shoulder MRI will tell about that area. Doctor wants to assess that because it did not show up on chest CT.

Going back on Tarceva. Seems to have held the beast at bay in the lung area very nicely.

That's it for now. Will update after MRI.

April 16 - MRI results of the shoulder were not good. The discomfort is being caused by a metastasis in the right shoulder, and is growing. It was not apparent on his recent CT scan. Bill had this before - back in October of 2005. He received radiation treatment to that area.

We received a phone call yesterday (April 15) and Bill will be on a chemotherapy regimen soon. From past conversations wtih the oncologist, it most likely will be Navelbine.

April 28, 2009 - Bill received first infusion of Navelbine. It was infused through a vein in his arm, and there was no problem. The nurse was fantastic. She stayed with him the majority of the time, and it went without a hitch.

He is also taking Tarceva 100 mg daily. Thus far, he has had no side effects - eating, sleeping, AOK. He has been scheduled for treatment for 6 weeks in a row.

Got up this morning, ate a hearty breakfast, did some chores, and took a shower. He is in very good spirits. Thanks to everyone here supporting us in this. :D

May 5, 2009,

Bill received 2nd chemotherapy regimen of Navelbine.

Nurse was adamant about how dangerous this was and that Bill needed a "port." She had been talking to the PA about Bill (I overheard it), and when she saw that I had, she came over and said that she was going to speak with the doctor. Also, that I should contact the PA right away for an appointment for surgery for Bill. Mind you, this is a head nurse. Yikes.

May 12, 2009, Bill arrived at the Center, had blood tests and usual BP and weight, and proceeded to the oncologist.

Our oncologist said that the red bump on Bill's wrist looked like a bug bite from outside. Bill was weeding last week. He said that the blood counts are down a bit, and that Bill would be receiving Procrit for today and continue on to have the infusion of Navelbine.

However, he thought that next week might turn out to be a respite from chemo to allow the blood counts to rise.

I know that he wanted to give Bill about five or six consecutive infusions straight away, but such is life. We accept this. I know that this man cares. Bill has been his patient for 4 years and 5 months. How could he not think of Bill as a feather in his cap? After all, Bill is an older guy who has met cancer and said, "OK, this is a job."

Now, here is the really nice part. The neck node is flattening. It had become quite a large "egg" on the side of Bill's neck. We have been checking and it is definitely coming down from being a bulb to a flattening - not so obvious to the sight anymore, and most assuredly a change to the touch. : )

May 19, 2009- Visit did not include infusion of Navelbine. White counts were too low. Did receive a Procrit injection for the red blood cells. Doctor said that next Tuesday (probably) to receive infusion, if count rises.

Seeing the urologist on Thursday, May 28, 2009, to see what the prostate indicates (through yet one more test) and to see if there is anything can be done to alleviate the urgency at night.

Bill is a bit fatigued, but managing. He is napping more during the day - mostly from so many night trips to the loo.

May 26, 2009 - Appointment for infusion of Navelbine. All went well. Starting taking antibiotic for visit Thursday, May 28, 2009 to the urologist for further testing of prostate. Will know more following that.

Bill feels good this morning, the day following the infusion. He is very active this morning, and is in very good spirits. He told the doctor yesterday, at the visit, that his arm was feeling surprisingly better. I had noticed that he was not taking pain pills for it anymore.

June 2, 2009 - Visit to Oncologist - Injection of Navelbine. All is well. Med for prostate working. Blood counts were fine for the Navelbine. Bill is not as tired following treatment.

June 8 - Went with Bill to podiatrist to have Bill's toes clipped. Doctor thought feet looked very good. Neuropathy has lessened greatly, and circulation looks fine.

June 9 - Visit to the oncologist. Had Navelbine infusion. All went very well. Following visit, we went out to dinner with son and grandson. Bill has been feeling well. Yesterday, he worked with Joe and Joseph removing old appliances from basement to put out for pickup (mostly watched and guided). :D He is really enjoying having so much help.

June 23, 2009, Bill received his infusion of Navelbine. He is also continuuing with the Tarceva. This will be the last of the Tarcevea due to the shoulder being a problem more so, and the neck nodule seemingly larger.

Our oncologist thinks the neck is as large, but we see that it has grown somewhat. He recommended stopping the Tarceva at the end of this prescript.

Bill has been very, very tired, and is sleeping a lot. However, we went shopping yesterday, June 25, and although we got all the packages home, he practically collapsed in the house.

I tried to lift him, but he was dead weight. After a while, he was able to get himself upright, and raised himself to walk to the lounge chair in the dining room.

My thought was that he may have been dehydrated. I got the iced green tea. He took in about three glasses, slowly, but effectively. It worked.

I am at the point where my heart is broken. Bill moves very, very slowly of late, and it may be the chemo, but I do think, honestly, that it is the cancer, as well.

Scans will be taken in three to four weeks. My request of the oncologist will be to scan the brain again. I don't know where I am right now. I am trying so hard. Bill has been losing control of his urinary faculties, and although the urologist gave him meds for that, they don't work that well.

Sorry, I wanted to be positive, but there isn't anything left of which to be positive today.

I am really, really sorry. Thought I would add this - that Bill has had these effects "somewhat" in the past. Perhaps, this is another case of a bad patch. I didn't want to leave this entry as a downer. Just praying here.

Thinking, too, that I had read recently where the Spiriva he has been taking (since last October, for breathing) has an effect upon an already enlarged prostate. That may be a reason for the urinary problem.

Last week's chemo (July 1) went well - nothing to remark.

July 6, 2009 - Chest and Neck Scans taken at Radiologist's.

July 7, 2009 - Scan results faxed to oncologist's. Findings: Lungs, shoulder remain same. Neck nodule growing and new nodes presenting.

Oncologist changed regimen to taxotere beginning next week. Brain Scan scheduled for July 13, 2009.

July 13, Brain Scan showed increase of fluid on right perephery of brain, but no blood present. Also, finding was that there were no brain mets.

Visit to Neurosurgeon - no intervention at this time, and Bill was to do usual activities as able.

Future brain scan scheduled for mid-August to assess.

July 20, Infusion of taxotere. Went well. July 23, Fatigue followed after coming down from steroids.

Visit August 3 to have labs taken. If good, infusion on third week with taxotere. Depending on labs, infusion will take place every three weeks thereafter.

August 10 - Second infusion of taxotere. Everything went well. Bill feeling fine. Red count down to 9, so had Procrit injection following chemo.

He has lost some weight - Was down to 160, but has recouped 2 lbs. this week, and hopefully will continue with "extra eating."

Appointment next week for labs. Also scheduled chest/neck CT scan for August 25 to evaluate at that juncture.

August 11 - CT scan of brain taken for "ribbon of fluid." Will receive report soon. Copy will be sent to neurosurgeon, and to us.

Copy of brain scan sent to us shows decrease in fluid size. No call from neurosurgeon. He had said he would call if there was an increase.

August 17th and 24th - regular visits for labs/bloodwork.

August 25 - Ct Scan of Chest and Neck w/wo contrast. Received phone call from oncologist's office. Nurse, Matt, said that the radiologist saw a suspicion for a PE (pulmonary embolism in lung). We were advised to go to the ER and have them check it out for same.

Spent 8 hours in the ER having Xray, scans taken and the pulmonologist from our team came and assessed. He said that the PE was not evident, but that he would order an ultrasound of Bill's legs. If there were clots there he would be admitted. If there were none he would go home.

Ultrasound was positive for blood clots in both legs. Bill was admitted and treated for two days. He went home with Lovenox (injected morning and night, and coumadin 1 pill (5mg) in the evening.

August 31 - visit to oncologist and labs. Bill received taxotere infusion. Doctor gave prescription for scan of shoulder. Wants to look into something for both shoulder and neck.

September 4 - Scan of shoulder. Results not back as yet.

Nurse from onologist's office called Sept. 4, and said to come in September 8 for bloodwork to test for coumadin levels. The numbers had not "moved" as of August 31 visit. Said to give pill and a 1/2 each evening (7 1/2 mg).

September 7 - Received call that coumadin levels were good. Go back to 1 5mg pill daily. At least for now, no more Lovenox injections.

September 9 - Received results of shoulder scan in mail - significant size and into musculature. Waiting for visit to discuss with oncologist.

September 15, 2009 - Visit to oncologist results in stopping chemo due to nothing to offer. He determines that the lungs are stable, but the shoulder met is growing and that anymore chemo would give more toxicity than benefit. He spoke two weeks ago to the radiologist about the shoulder and the neck. He had told us there may be clinical trials, but now he states none are available for someone who has had so much chemo.

The blood labs showed need for adjustment again for the coumadin pill. Now, 5 mg for three days, 1-1/2 pills on fourth day, continue in that pattern.

We have an appointment to see the radiologist for a consult on Monday, September 21, and will discuss what can be done to alleviate pain in those areas.

In the meanwhile, Bill has a prescript for the fentanyl patch; one every 3 days and then change to other side of just beneath the collar bone.

September 21 - Visit with Radiologist Oncologist and the discussion was about the shoulder and neck.

As it stands, due to having been radiated before, and additionally some overlap in that area when lung was done, that could result in paralysis. As for other procedures: RFA and if not that, a quadramt (not sure of the word) to kill a nerve in that area. Don't like the sound of the latter.

As for neck, it could be treated, but Bill was more concerned with the shoulder. Further discussions on next visit to regular oncologist as to all of this.

September 22 - Blood coumadin levels checked. Back to 5 mg pill daily.

September 23 - Called oncolgist's office about swelling in Bill's legs (below knee) and feet. Told to see GP.

Saw GP and he prescribed stockings moderate pressure, and will see Bill in 3 weeks. If improvement in swelling, then further pressure stockings will be the next step.

So far, Bill looks good, albeit a little drawn looking, but the heavy fatigue has greatly lessened. He is actually up for longer stretches, and walking much better. Loves doing things, so he's got his pep back more than a bit. :D Doctor said that the leg swelling had been hampering his gait. Hoping that continues to improve.

October 6, 2009 -

Went this morning for the flu shot. Came home, received a phone call regarding a consultation about RFA (radiofrequency ablation) for Bill's shoulder. Made a faux pas thinking we already had a consulation about radiation to that area. This was different. The doctors had referred Bill for this. I hope and pray this will be a viable procedure for him. The shoulder is very painful. He doesn't complain about it, but it is wearing on him. Will update on the results of tomorrow's consultation at 2 pm.

Had to request that the blood labs be taken later in the day to make room for the appointment regarding the shoulder. Will be at hospital and then, over to the cancer center labs. I am grateful that I am able to do these trips. So far, I have been OK and not too tired. (I know it's God helping me.)

October 10, 2009 - We have had the consultation and following that, the blood taken for coumadin levels.

The consultation was with a very caring radiology doctor, who sat with us in the actual room where they perform the procedures.

He said that if Bill were his own father, he would not recommend this, but it was due to not being able to guarantee a painless result. All of what might be done could be for naught.

He told us to come back if there were no other options and we could talk about it again. Before leaving, he gave us the name of an orthopedic surgeon, who he told us, might know of a better option for Bill's pain.

The blood work came back a bit better than last week. Bill's number (2.2) is getting closer to the target goal (between 2.5 and 3.0).

The swelling in Bill's feet and legs is down greatly with very little residual left if any (I cannot see anything swollen). The stockings, the extra 1/2 water pill (had been taking 12 1/2 mg for several years now - now changed to 25 mg) and the legs raised when sitting must be doing him good.

We will talk with the oncologist this week to round out the discussion we had with the new radiologist. Maybe he can throw some light on the subject.

Bill will see him October 13, and will see the GP on October 15 (Bill's 79th birthday :D:D ). He has come a long way on this journey, and will be, God Willing, still here for his 5-year marker on December 4, 2009.

October 14, 2009 -

Yesterday, we had the visit to the oncologist, who repeated that there were no more treatments available. However, after a discussion about the shoulder pain, and his referral for rfa (radiofrequency ablation) we opted to do it. The shoulder met is emanating from the bone there, but it is larger than for what they use quadramet. S0, the radiofrequency ablation might help debulk that particular tumor better.

He was also concerned that Bill's counts (platelets) might go down with the quadramet and presently, they have returned to normal standing.

Also offered was a hosptice on a "needs basis" to help with Bill's therapy for the shoulder as he goes through this. He has difficulty dressing, showering, and we have been dealing with that by ourselves. We have it down to a "science" with a system daily to get those tasks accomplished. They can also contribute in the pain management department.

God be with us.

. . . . . . . . . . . . . . . . . . . . .

We had the hospice interview yesterday. The woman from their services was wonderful. She explained everything to us: That they would be with us on a needs basis, and sent a bed which was a godsend. It has an air mattress, fully adjustable, and the bed itself is motorized for head, body and legs. It is in our bedroom. I moved the night table over next to the other one, and Bill has ample room. He is still up to climbing stairs, travelling to and from appointments, but last night, he slept deeply and soundly.

We are still doing fine. He looks very well, and they will be helping him with the pain in the shoulder. We will see if we need the rfa. Perhaps, the risks of it may be too much of a gamble. Presently, he is using the right arm at least somewhat. Losing that would be awful, and there is that risk. We will see.

HAPPY 79TH BIRTHDAY, BILL :D :D

November 26 - HAPPY THANKSGIVING TO ALL. Bill and all of us had a wonderful day today. Our son, Joe, was visiting for the week, and we had a delicious dinner of turkey with all the trimmings.

Bill ate a generous plate of turkey, mashed potatoes, stuffing, string beans, and cranberry sauce, plus two pieces of pumpkin pie. :D

He may be home in hospice, but he is doing fine. The children were not surprised at his appetite. :lol:

They know him well. He is still able to negotiate the stairs to the second floor every day, albeit a bit slower than a year ago. But then, he is getting older....

For the time being, we have decided (Bill mostly, but with me in total accord) that the radiation for the neck is not really needed, and we do agree to wait until it may become so. He seems to be enjoying the respite from treatments, and since there are none in the offing, this new stance is not an unpleasant one for him.

December 3, 2009 - In one day, Bill will have beaten the beast back for 5 years. :D:D

December 16 - Saw the oncologist yesterday, and we spoke of Bill's being removed from hospice to receive some palliative care for the shoulder and/or the neck.

The doctor will be calling the radiologists involved in those treatments. I will call both doctors and hospice today. Will report back later with update.

Thursday evening, December 17, Bill fell backwards down about three steps and landed in the kitchen, hitting his head on the side of the portable dishwasher. Called hospice and 911.

He was sent to the hospital. I stayed behind with the hospice night nurse until our son and daughter-in-law arrived to take me over with them. She noticed that the back of my left hand was quite swollen. I was behind him as he was ascending the stairs, and my hand must have slammed back onto the living room wall when he fell back and swept passed me. She bandaged it to keep the swelling down.

They took a ct scan and there was an area of blood in Bill's brain (had it prior, but smaller) that has grown and may need to be drained.

He was eating, sitting up, and conversing when I left the hospital late yesterday. He doesn't have a room as yet. They are full up. At first, he was labeled ICU but has been downgraded. (That is a good thing.)

Will be going back today with Linda and John. We are expecting snow and want to get there and back before the storm.

I wish there wasn't that prospect of draining. It scares me, and is one more thing that Bill doesn't need on his plate. Hope someone knows what they are doing here. Up until now, it has been "observed," albeit, it was smaller.

January 1, 2010 - We are in a rehab center, the gorgeous one I told you about. Well, the ambiance is lovely, the people in charge all mean well, but the every day aids - some are wonderful, some are average, and some are ......

You get the idea. If you do not advocate for your loved one you are in a very bad position. It takes a lot of intervening when a loved one is in a care facility.

Trust me, I spend at least 8 hours a day at one and it is no picnic.

January 3, 2010 - Bill has been "sort of" ignored at this facility. The excuses have been that there has been "the holidays," there has been "shortage of help," there has been ......

ENOUGH!!!!!!!!

January 9, 2010 - After the holidays, and the shortage of nurses, and aids, I had a private meeting with the staff at the facility, and outlined what the goals were.

They are to move Bill from bed to commode, and able to do so with a walker. Bill has been receiving speach therapy and communication skills. The physical therapy has helped him greatly. He can climb the five steps up the the front door.

They intensified his therapies and he is moving closer to coming home. His ability to be more fluid with his ideas has improved.

His appetite is very good, and he feeds himself the breakfast. I help with the lunch and dinner. Eating thick oatmeal with blueberries, scrambled eggs, with tea and muffin is easier than the other meals.

Eating with one hand (the left) is the problem, but with some meats cut for him, he can do it with other meals.

They give him Ensure and one another intense supplement of protein (can't remember the name).

He is looking good, and got a chance to see his greatgranddaughter :D when she was brought to the facility.

I have photos, but need to resize them.

:D

January 19, 2010 - Bill has arrived home from the facility. It was a bit difficult, but was managed quite smoothly. Bill wasn't able to stand on his two legs without bending at the knees. The transfort chair helped Bill to be lifted by our Brother-in-law (also named Bill), my sister, Claire, and myself, up the five steps to the house.

We have the formal dining room transformed into a bedroom furnished with a hospital bed, and a commode (made to look like a chair by a well-known company. We use the dining room table (now placed in front of the wall-to-wall windows as a catch-all for bathing and lotion items. It looks quite nice and is not hospital looking at all. It is just off the living room, where there is plenty of room to move around.

We live these days one by one. I cannot think of how else we can do it. We don't look too far into the future, but we are certainly very grateful for what we have had.

February 4, 2010 - We are now in a decision making process. Bill has been sleeping most of the hours of the day.

He eats, and that's about it. He sleeps long hours.

Whatever this means, has brought me to the conclusion that Hospice via Medicare should be in on the day-to-day routine.

All the healthcare workers have signed off, except for the physical therapist, who will show me how to use the "lift." She will also show me how to manage the new wheelchair - the one that reclines.

The "lift" is an enabler to transfer Dad from the chair to the bed and back again.

Our son, the priest, will be visiting this evening, and he is sooooo in denial. Pray for me.

Bill died on March 25, 2010, at 2 pm. He had received the Last Rites of the Church, and our son had left to return to his parish. The healthcare worker stayed for a while sensing that Bill was not going to make it through the day. She then left for home.

At 2:13 pm, I passed the bed and saw that his breathing had changed. Within minutes, he stopped breathing and with peace, left to be with God.

He died without pain, and had spent his last days at home in a lovely dining room filled with light, and close to all those he loved. His being available to visits kept his days filled with life.

__________________________________

Photo: Barbara (Great Grandmother) and KayMarie (Great Granddaughter). Taken at the facility where Bill was staying. January 2010.

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  • 1 year later...

Oh Barb,

I so haven't wanted to check for updates on your and Bill's journey as I have dreaded the natural progression that your "taking things one day at a time" has been referring to.

My heart goes out to you, I can only imagine the strength that this is taking and the heart ache you are going through.

I will pray for you most certainly and for Bill, and I hope that I am not mistaken in thinking that Bill sounds at peace and not in so much continuous pain from his shoulder.

I wish for you continued strength and support, and whatever it takes to help you continue to get through this journey. Bill has fought so long and so hard and you have been there by his side and you both must be so very very tired.

I must quit this crying and get rid of any sign of red eyes before the big Guy gets home from work!

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Reynsie, Diane, and Kasey,

You are all thought of and in my thankful prayers. Thankful meaning that your posts and support are crucial in this walk of Bill and mine.

Bill has been really in and out of things. Tonight, he was perfectly lucid, and after a lovely little supper of scrambled eggs, with peanut butter on toast, plus a strawberry shake, he sat watching NCIS with Mark Harmon. It's his favorite.

Taking "one day at a time" doesn't mean any negativity. It means that there are changes from day to day, and meeting the needs of each day is something inherent in the process.

I love you all. Please know that. It is not an empty statement. I have come to regard you all as family. Family (as you probably know) has less to do with blood ties. It goes much, much further.

Barbara

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We love you too!! I have always felt a closeness with you two as we have traveled these roads together for a little over 5 years now. I will continue with you two in spirit and prayers every step of the way.

(((Barbara and Bill))))

Jamie

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Jamie,

You are an inspiration (I know the word can be over-used). In our experience over these many years, you have stood out as a fantastic survivor.

I tell people, whenever the opportunity arises, that I know this woman .... who .... . You are that woman. God bless you, your treatments, results and everything else belonging to you and yours.

Love you :D:D,

Barbara (and Bill) :wink:

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Barbara,

My lovely friend. Thank you for letting us share in this love between you and Bill. We all take this one day at a time, as beings on this planet. No different from anyone else, but perhaps a little more aware. Such kindness and tenderness emanates from your posts; you have a piece of my heart.

Stephanie

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Barbara, there is nothing I can say that has not already been said here more eloqently. The journey you and Bill have traveled is long and brave. I know this is a very difficult time in the journey for you and your family. My heart is with you. Thank you for sharing and updating Bill's story.

Judy

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(((Barb))) ... I continue to keep you and Bill in my prayers every day. Reading through your story was like reading a romance novel - so full and love and determination on both your parts. You have something that is rare these days - a treasure trove of love that no amount of money can equate to. As you both continue on this journey, both with happy moments and sad moments, I hope you know that there are many all over the world who are holding you dear in their hearts.

God Bless,

Linda

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Barbara, I join so many others here that care about you and your sweetheart and feel like we know you.

I have walked your journey so I know a little of what you are going through. I think the toughest part is watching a strong, vital, smart man suffer through this.

Give Bill a kiss for me. And accept a cyper ((((hug)))) from me. Bless you.

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Thank you, Carol, Stephanie, Judy and Linda,

Your words give a great deal of comfort and it is very close to your stopping by and saying hello. :)

I may have told you that they delivered the Hoya lift for us to use in moving Bill from bed to chair (the chair was changed to a high-back with abilities to have him recline and have his feet up (if desired).

Monday (tomorrow) they will send a healthcare worker, of whom we will have benefit for two hours a day, Mon.-Fri., which will help a lot.

Today, Sunday, they will be sending a representative to check in to see how we are doing.

So far, so good with the management of everything.

I shop through an online grocery. The really big ones have this service. They gave me free delivery for two months as an incentive. It has worked out beautifully.

As for the bathing, I think it's now down to a science. It's a struggle, of course, due to not being able to move him easily. The technique I have used is one that has him cooperating with the moves. That helps greatly. Feeling fresh every day is a good feeling for him. The product I found is a bath without rinse, and contains soothing ingredients.

We also use a balm (the farmer's use on the cows). It worked wonders on a butt sore that he acquired at the hospital. The two foot sores are now down to one, and that one is disappearing.

At first, I admit that I was anxious about how to change the sheet because of his very painful right shoulder when moved.

The answer was to go from bottom to top with the sheet. It worked nicely. He helps with bridging the butt, and with bending a bit at the waist when the sheet reaches that end. It took a couple of tries to get it right.

This may seem as though we are publishing incidentals, but when anyone is caring for someone and would like a nice clean sheet every day, it's crucial to Q of L - even the caregiver's.

All's well and I feel comfortable with the arrangement. Bill is still eating and taking fluids, but is sleeping most of the day and all of the night. He is not in any pain.

They assured me that pain (if it becomes an issue) will be addressed through appropriate meds. Thankfully, Bill is in no pain (except the right shoulder is moved).

He is on a 25 mcg Fentanyl patch, and Spiriva for breathing.

He looks a bit gaunt, but he is doing OK. He told me he wanted to make 80. I told him, "You are almost four months into it." :) He smiled.

I told him it isn't the amount of time, it's what you do with it. I think he has done just fine.

Barbara

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Thank you, Susan,

We can feel the prayers. Truly, they have all been felt during this journey. That is a fact.

Why else would Bill have had such an ability to ease through the treatments over the years, and to survive now, but still with comfort.

He eats three times a day, and his appetite is quite healthy.

I received a phone call from a niece, who has volunteered to come and stay to help with things. It has been a Godsend. She will arrive next week, and we will be a team effort in this.

Bill also received the Anointing of the Sick (Last Rites/Extreme Unction) last evening from our son, Fr. Bill. Bill has received it prior - when he had WBR. Nowadays, it is thought of as a help rather than something given with death in mind.

Yes, I would definitely say that prayer has been an integral part of all of this. So, thank you for yours, and we are very grateful for them.

Barbara

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Barb,

I too have been following the beautiful love story you and Bill have shared for so many years. You're a wonderful and loving wife and I'm amazed with the strength and courage you have...but then, that's what love is all about.

I kept putting off hospice for my husband until the final 10 days, but they were such a blessing for us. I was finally able to rest which I desperately needed after 9 months of less than 3-4 hrs sleep per day.

I know it's hard for you right now, but I also know that you treasure each and every moment you have with your wonderful husband. Bless you both.

(((hugs and prayers)))

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Michelle, my dear, (Big hug here from me to you)

Your story, as well, has been a must for me to read.

I have/had followed it with a devoted interest.

Your journey, although a bit different, was nonetheless, the very same heart-wrenching story we both have known so well.

Yes, hospice is fine, but in Bill's case, which is a place apart, there is a need for even more help. They have not provided all the things to eliminate the skin wounds which can develop into serious stages.

Bill's heart is very, very strong. His journey has been mostly a fairly doable thing in that he is still viable and cooperates fully.

Even now, at this stage, he is there, talking with the children who drop by daily and weekly.

My thoughts of being so grateful to have our niece join us has resulted in a sense of relief. Bill, with his stamina, and his zest for "being here" could last quite some time, so yes, I need the help.

I locked myself out of my inner house today.

Putting the garbage out (some of the waste to eliminate from the home from medical refuse) I locked myself out from our kitchen. Our entrance leads to the kitchen or the basement. I found myself in the basement, but not able to access the kitchen on the main floor of the house. Thankfully, we had a phone down there in the basement.

Our son, John came over, helped me access our inner kitchen, and repaired what was damaged.

Our lives are becoming less than boring, but a lot of it goes by without Bill being aware. This tells us that we are and have been losing that special input he would have love to have given.

Barbara

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Barb,

I've never been a big fan of Valentine's Day, but reading your posts to Michelle and me yesterday was the most powerful testament to love I have ever read.

There's a reason Bill's heart is strong--it is so filled with love--his love for you and yours for him.

Add my love to that. I love you both.

Susan

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(((Barb)))

I'm humbled by your "Story" and honored to be virtually sharing in you and Bill's journey right now.

I'm SO glad to know your niece will be coming to help and like so many, I'm keeping you both in my prayers constantly.

I agree with Susan in that your posts and journey are a powerful testament to Love that we should all aspire to achieve.

(((Love and hugs)))

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Katie,

It is with understanding that I respond to your input.

I know, only too well, what this must have been for you, with your Dad, and those with you who may have understood.

This journey is all too painful.

Each day I rise to the same, and wish that it were different, but it isn't.

Your knowing that our niece's arrival will be of help is "right on." She will be my companion in this "end-of-life journey."

When she was a little toddler, Bill and I used to wheel her in her carriage. Her Mom loved her brother, Bill, (my Bill) and she treated me. as his girlfriend, very warmly.

When Cissy gets here, I will be so grateful. I need someone on the "other" side of the bed to pull the chux and bring Bill up to where he should be in the bed.

Katie, I love the fact that you created this site. It is a support, lifesaver, and a great comfort for all who find us here.

May all who come here find solace, and be of the feeling that we are "family." We are family and I hope everyone knows that we accept everyone, regardless of diagnoses. Lung cancer is a devastating disease, but we can beat this.

Love you,

Barbara

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  • 1 month later...

This is to let everyone know where we are at this moment in time.

Bill is in bed and mostly confined to that position.

However, we have a healthcare worker, who for the most part, is a Godsend.

She comes in at 7 am, and gets him going by initiating exercises. He has an overhead trapese, and gets his arms working. That includes both arms, including the right arm which is immobile.

My message is that we should try to find a positive witnin each day, and extend it as far as possible.

Each day, ask yourself, what are my blessings for today?

Hopefully, you will find that you have some that may help you.

Love you all,

Barbara

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Barbara my dear friend.....my thoughts and prayers are with both you and Bill each day. You have no idea how much strength you give me just reading your journey and what a strong and loving woman you are.

God Bless! ((((hugs))))

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Barbara - for some reason words are failing me at this time, but I will just speak what my heart feels.

I find it unbelievable that with what you are going through with your beloved Bill right now, that you take the time to remind each and every one of us how there are many blessings still to be seen, even in the worst of times. In this crazy and busy world it is often easy to forget the many things to be thankful for. My Nan used to always say to me "Look for the silver lining in any situation and you will always find at least one". You brought back so many memories of my beloved Nan and her words of wisdom. I thought her to be the most wise and wonderful woman who ever walked this earth, but today I do believe there is another and her name is Barbara.

I am happy that you are able to still see the blessings through the pain you are experiencing. Thank you from the bottom of my heart for giving me that memory of my Nan and for giving of yourself at such a vulnerable time.

Many hugs and wishing you many blessings today and always,

Luv,

Linda

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