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Patient: Ross

Diagnosis: Multiple Myeloma
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Introduction
Starting in December, 2003, Ross began complaining of lower back pain. He went to his orthopedic specialist who recommended an exercise regimen.

The pain only got worse. On February 8th, 2004, he woke up and couldn't get out of bed. With my help, we managed to get him to the car and I drove him in to the hospital.

Within 3 hours, he was in an MRI machine and the doctor told us he had a tumor on his spine.

After several tests, including a CT scan, a bone marrow aspiration and lots of blood work, we were given the diagnosis of Multiple Myeloma. This is a cancer not unlike leukemia. It develops in the plasma cells within the bone marrow. It then proceeds to eat away at the bone.

They found several lesions (holes) on his spine, his skull and his pelvis. The damage to his spine resulted in partial paralysis of his legs. He had to walk with a cane for a while. Since treatment began, he is able to walk, carefully, but unassisted.

He maintains an amazingly positive attitude, a wonderful sense of humor and an inner strength that's inspirational.



Report created by: Linda
Date: 06/23/2004 at 5:53 p.m.
Subject: So Far....


 
Since his diagnosis in February, Ross has received 30 rounds of radiation. He began taking Thalidomide and Dexamethasone in April.

This resulted in a dramatic improvement. He has been scheduled for a stem cell replacement in July. In preparation for this, he has been given a Hickman catheter. This is tubing that is surgically inserted into the jugular vein in his chest. All blood is drawn from this port, now and most medications are administered through it.


He has been given his first round of chemo. (Cytoxan) His blood counts have bottomed out. He has no immune system; so we are being very careful. We have virtually isolated ourselves, here, at home.

It's not so bad, really. We enjoy each other's company. I write and do my housework, cook and knit. He putters around the house, doing what he can in the way of chores. He also loves his golf channel. We do lots of snuggling and giggling.

Next week, if his blood counts have recovered sufficiently, we will go back to Duke for apheresis - which is the harvesting of his stem cells. They will collect enough for two transplants.

We will come back home for a week. Then, on July 6th, we'll go back. He will receive high dose chemo on the 7th, rest for a day and then get his stem cell transplant on the 9th.

We will stay in an apartment near the bone marrow transplant clinic and expect to be home by the end of July.

Then, in September or October, he will go through the entire transplant procedure again. This is called "Tandem Transplants". Research has shown that performing the two procedures 60-120 days apart, dramatically improves survival rates.

The transplants are "autologous" meaning they harvest and use his own stem cells - as opposed to using a donor's.

We have received exceptional care from the doctors and staff at Duke and the ones, here, at home. We are very grateful.

We also appreciate all the love and support from our wonderful family and friends. You keep us strong.

That's all for my first report. I will write more when there is some change.


Report created by: Linda
Date: 06/25/2004 at 5:17 p.m.
Subject: Blood work results

We have just returned from the oncologist's office in Charlotte. Unfortunately, Ross's blood counts are still bottomed out. His platelet count had actually gone down a little. He has no immune system.

We had been hoping for an upturn. He can't go back to Duke for the apheresis (cell harvesting) until he actually grows some cells! We go back to Charlotte for tests on Monday.

I am giving him shots of neupogen, everyday, to stimulate cell production. I have to stick him twice, in the abdomen. It's awful. Ross just takes it like a trouper. He is such a good man.

Well, it looks like we will be recluse for a couple more days. The rain makes it good snuggling weather. We'll take advantage.


Report created by: Linda
Date: 06/28/2004 at 2:41 p.m.
Subject: Blood Work

Ross had a difficult weekend - lots of pain and fatigue. He rested and I gave him his shots as prescribed.

He gave us a little scare on Sunday, when he started to run a slight fever. I gave him tylenol and monitored him all night and his temperature returned to normal.

Today, we went in to the oncologist's office to have his blood checked. On Friday, he had a white blood cell count of 400. We were hoping for a count of 1,000, today. He needed at least that in order to begin his apheresis (cell harvest).

It was such a relief and a bit of a surprise to see that the count had risen to 3,400!! All of his other counts were up, too, indicating that his immune system has regenerated and he is well within the ranges needed to proceed.

Tomorrow morning we will be at the Bone Marrow Transplant Clinic in Durham. Martha, our nurse there, says we should be able to get enough cells harvested in just one day.

Thanks for the messages and the kind words of support. It means everything to us to have such a wonderful support system of friends and family. We love you. We're very strong because of you.


Report created by: Linda
Date: 06/29/2004 at 8:05 p.m.
Subject: Back from Durham

This morning, once we got to the transplant clinic in Durham, we had to wait on the test that indicates the percentage of stem cells in his blood. He needed a count of 10 to begin apheresis. The nurses were just thrilled to announce that his was a count of over 80! In just a little under 6 hours, they were able to harvest enough cells for the two transplants.

We can relax for a week. No shots, no blood tests, just home. (Sigh)

Kathleen has very kindly held off labor for us; so grandson (#3) will be born any day, now. (I'll let y`all know.)

That's all for tonight. I am exhausted.

Don't forget to be good to each other. Tell your family and friends you love them and take time to snuggle with your honey.


Report created by: Linda
Date: 07/05/2004 at 8:05 p.m.
Subject: Grandson #3

A baby brother for Henry and Campbell!

Kathleen was amazing.

He was born this afternoon, July 5th, at 3:35.

Weight: 9lbs.
Length: 22 inches

Name: Ross Ernest (We will call him "Ernie")


Report created by: Linda
Date: 07/07/2004 at 2:25 p.m.
Subject: High Dose Chemo

We're in Durham, now. Ross received his Maphalan, today. It's supposed to be awful, terrible stuff; but Ross came back to the apartment and wanted something to eat!

I'm following all of the doctor's orders to a T. I'm probably a little anal retentive. (But, so far, so good.)

Keep us in your thoughts and prayers. This is supposed to be the hardest part.

Linda


Report created by: Linda
Date: 07/08/2004 at 2:06 p.m.
Subject: Hangin' in there

Ross is just amazing. The nurses are so impressed.

He looks wonderful, too. I convinced him to let me shave his head bald. (Been wanting to do that for years.) He is a FOX.

All the side effects of the chemo are yet to be seen. Our nurse tells us that this weekend will probably be tough.

So far, though, he is eating and drinking and following Dr.'s orders to a T. (Dr. Linda, that is.)

Tomorrow, he receives his stem cells. Then, he will be monitored, daily until the new cell are totally engrafted. Should take 2-3 weeks. I'll try to keep you posted.

Thanks for caring. We appreciate our friends and family so much.


Report created by: Linda
Date: 07/09/2004 at 5:17 p.m.
Subject: Stem Cell Infusion

Ross received his stem cells, today. They simply injected two big seringes full, into his Hickman catheter.

The stuff that they use to freeze the cells cannot be removed and when it is injected into a patient, it causes a bunch of nasty side effects. (Just what we need.)

He remains in good spirits - though pretty fatigued and nauseated. He is still bravely trying to eat a little at a time.

I know that one day - hopefully soon - researchers will come up with a gentler way to do this. We'll all look back on this era in medicine and say, "Do you believe that they used to do that to people?"

In the meantime, we take what they offer and hope for the best.

I will write again, soon. Thanks, again for caring. It really helps.

Linda


Report created by: Linda
Date: 07/11/2004 at 8:43 p.m.
Subject: Waiting Game

Ross contiues to show the effects of the high dose chemo (nausea, vomiting, fatigue) but doesn't complain. He has not lost that wonderful sense of humor!

His bloodwork is analysed daily. His numbers have to drop some more before they can come up. We are just waiting and following Dr's (numerous) orders.

I hung two bird feeders outside the livingroom, on the patio. We watch the mourning doves, house finches cardinals and chickadees. Nice distraction.

Thanks for the notes of love and encouragement. We know that we are blessed to have so many good people in our life.


Report created by: Linda
Date: 07/12/2004 at 1:26 p.m.
Subject: Home away from home

Ross's treatments take less time, now; so our daily visits to the bone marrow transplant clinic usually end by noon. We return to our apartment, where he rests for a while.

Today, he just needed some calcium. He's been dringking green tea and ginger ale (as per instructions from my sister, Maggie, the nurse). That seems to have made a significant improvement.

There is a fitness center in the complex. I have been using it regularly. We have walkie talkies; so that I don't get too worried about him while I'm gone.

There is also a "business center", with a computer and some other office and audio/visual equipment. I was using that to get online; but good ol' Charlie has hooked me up, here at the apartment. Now, I can read messages to Ross, as we sit together in the livingroom. It is the best medicine, yet, for him tohear from his good old friends and family members.

I love my Ross so much. Thank you for caring about him.


Report created by: Linda
Date: 07/13/2004 at 8:34 p.m.
Subject: Oh, Deer!

Ross and I decided to get outside for a little while, yesterday evening. We took a wobbly walk along the edge of the woods and startled a big whitetail doe. She sprang gracefully back into the forest. It was a special moment.

Ross is experiencing some pain as part of the chemo's side effects; however, we are getting a handle on the nausea. There are good drugs for everything. I am learning when to administer in order to prevent a lot of the discomfort.

Tomorrow, he starts getting the neupogen shots - which stimulate the cell growth. Things should just keep improving from here, on.

Keep the faith.


Report created by: Linda
Date: 07/14/2004 at 3:50 p.m.
Subject: Tough time

Today has been the hardest, so far. He is in a lot of pain and the nausea and vomiting are back - big time. He is weak and wobbly. I feel so helpless.

Maybe the doctors and nurses can come up with something that will help. I'm going to insist. The other day, one doctor said that if we didn't get a handle on the nausea, then they might put him in the hospital for a couple of days and keep him on intravenous. Then, he improved for a day. Hospitalization may be what we need to do, now.

He's still a sweetheart - amazingly strong; but this is getting to him. I suppose that is to be expected.

Pray for improvement.


Report created by: Linda
Date: 07/15/2004 at 1:53 p.m.
Subject: One day at a time......

We arrived early, this morning, at the transplant clinic. Ross’s blood work showed that he has no white blood cells. Zero. This is the result of the Maphalan, or high dose chemo. Now, we have nowhere to go but up.

He’s been suffering from the side effects. The most painful is the destruction of the mucous membrane in his mouth and throat. Swallowing is brutally painful; so he hasn’t been eating or drinking as he should.

The first thing they did for him, today, was to begin an intravenous drip to get fluids and electrolytes into him. They also gave him some potassium as his blood work indicated. They decided to try morphine for the pain and some intravenous medication to battle the nausea.

All those drugs zonked him out for several hours. When he started to wake up, I asked him how he felt. He said, “I’m fine. How are you doing?” He really wanted to know! Do you believe that? In the midst of this hell, he’s concerned about me.

The nurse came in and helped him to sit up in the bed. There were tubes hanging from him and he could barely talk; but he says, “Ahhh, the spa life.”

We are back at the apartment. Ross is pretty wobbly; but he has what he needs; so I feel a lot better. We are to be visited by someone from Home Infusion. Ross will get a morphine pump so he can self administer for pain. They will also hook him up to a bag of I.V. fluids to prevent dehydration.

All this is routine. None of his problems are unusual. They’ve started the Neupogen shots; so he should begin growing new cells. We will continue to go back in to the clinic every morning.

I’ll try to keep you posted. Thanks, again for the messages. I read each one to Ross. They really help both of us.


Report created by: Linda
Date: 07/17/2004 at 06:54 a.m.
Subject: Another day, another Ross

Ross received the morphine pump, as planned. It immediately improved his condition; however, he complained of a lack of energy.

Yesterday, his blood work showed that the reason for his weakness was that he needed blood. After receiving a couple of units, he became animated and stronger. It was so good to see.

Late in the afternoon, I realized that he was beginning to talk nonsense. Though much of what he said was humorous, it worried me. I called the charge nurse and she said that he was receiving a basal dose of morphine from his pump and it may be a little too much. Once corrected, it will leave his system quickly. No harm done.

So, until we can get into the clinic, this morning, and turn down the dosage, I have the silliest husband on the planet. He started to get up off the couch and I asked him to please wait for me - not to walk by himself; because he’s a little wobbly. I said, “ Now, don’t do anything dangerous, Ross.” He said, “Like make a soufflé?”

Today is Day 8 - after the transplant. He should be turning the corner, any day, now.


Report created by: Linda
Date: 07/18/2004 at 7:08 p.m.
Subject: hot temper ature

We are still trying to find what works for Ross in terms of pain and nausea relief. His mouth and throat are "denuded" of mucous membrane - very painful.

He hates the morphine. We had it shut off, so he gets a shot only when he gives himself one, by pressing the little button - which is almost never.

He hates the little cart that he has to haul behind him. The cart holds three tiny black bags containing pumps, bags of fluid and meds (including the morph). There are tubes running from the bags to the catheter in his chest. He calls the cart a little piece of s#*% and slings it around angrily.

He was cramming the little piece of s#*% into the front of the truck on our way home, yesterday. I heard a familiar chirp coming from one of the bags. In his frustration, he had inadvertantly pressed the morphine button. I said "Bub bye". He fought it for a little while, then drifted into the arms of Morphious.

I wake up if he gets hot at night. Last night, I took his temperature every hour or two as it was a little high. Today, we are concerned because he seems to be running a slight fever. My instructions are to keep an eye on it and get him into the hospital if it goes above (102.5F or 38.3C).

Even so, Ross seems to be doing better. His attitude has improved measurabley, this evening. We've had a few laughs. I may be getting my old Wossi back. Keep your fingers crossed.


Report created by: Linda
Date: 07/19/2004 at 1:58 p.m.
Subject: Good News

This morning, Ross's blood work shows a higher white blood cell count. This can only mean one thing - his cells have started to engraft.

We have turned the corner. It should all be uphill from here. Thank God, thank God, thank God!


Report created by: Linda
Date: 07/20/2004 at 3:05 p.m.
Subject: Continuing to improve

Ross's bloodwrok shows continuing improvement. His white cell count, yesterday, was .4. This morning, it was 1.6.

He is eating a little and staying awake for longer periods of time during the day. He even looks much better.

If he continues to improve at this rate, we may be going home next week!

I'll try to keep you posted.


Report created by: Linda
Date: 07/21/2004 at 6:51 p.m.
Subject: Light at the end of the tunnel

Ross's bloodwork shows continued improvement.

The best thing that's happened in a long time - he was freed from the cart, today. I said, "Wossi, aren't you glad?" He said, "I hated that little piece of...."

He is weak, tired and hurtin'; but getting better, everyday. He is eating and drinking a little more. It's all very encouraging.

He is still running a fever; but blood cultures do not indicate any infection. I think it is his body's reaction to the cell growth. It was the same last month, remember?

The nurse practitioner (doctor's assistant) that attended Ross, today, estimated that he might be ready to go home by next Wednesday or Thursday.

It will be so good to be home. Meanwhile, we will concentrate on getting well.

Thanks,again, for your kind words of encouragement and for your prayers and good wishes. With your help, we continue to be strong.


Report created by: Linda
Date: 07/23/2004 at 7:14 p.m.
Subject: Not quite over, yet

Ross' bloodwork shows continued improvement. However, he is still running a low grade fever and one of the blood cultures they did on him, shows that there is an infection somewhere. We are hoping that it is something simple that the antibiotics will take care of.

He is also very weak and gets easily winded after only a few steps. Our doctor's assistant said that in some cases, the Cytoxan he got several weeks ago, can cause lung inflammation. He is scheduled to take a pulmonary test on Monday.

He had a chest x-ray, today.

If all the tests prove that he is fine, then we may be going home early in the week. If not - well it all depends on what they find.

He ate some real food, today and is drinking lots of good fluids like he should.

Keep your fingers crossed. I'll let you know what they find.


Report created by: Linda
Date: 07/25/2004 at 12:25 a.m.
Subject: Better and better

I wrote about it and Poof! Ross' fever ended abruptly. It was probably due to the cell accelerator shots that he was getting. They cause a fever-reaction in some patients. So, now we feel that the infection that was detected in the blood culture was insignificant and that the antibiotics that he's on has already taken care of it.

He is scheduled for that pulmonary test in the morning and then his blood work will determine if he can go home.

Home. That word sounds delicious.

I'll let you know.

By the way, my latest article is online - published today. It's about bird watching. If you'de like to read it, just go to charlotteobserver.com and look in the Cabarrus section.


Report created by: Linda
Date: 07/26/2004 at 1:05 p.m.
Subject: There's no place like.......

Home. That's where we're going! Tomorrow morning, we'll go in to the clinic as usual, have his blood work done and if ieverything checks out - as I suspect it will - they'll remove the catheter from his chest and send us on our merry way.

We also talked with the nurse practitioner, today, about scheduling the second transplant. It has to take place 60 - 120 days from the first one. (You can look up the CTN study on Multiple Myeloma, in which Ross is participating.) We would like to wait until after Paul and Kelley's wedding - Oct. 30th. Looks like that will be ok.

So, barring something unusual, we'll be home tomorrow. Thanks, again, from the bottom of our hearts, for all the love and support.

This should be my last report until November. I've got to go pack!!!!


Report created by: Linda
Date: 08/18/2004 at 7:19 p.m.
Subject: Report from home

We've been home for three weeks, now, and several people have asked for an update. I am grateful that so many of you are concerned about Ross.

For a couple of weeks, his blood work was not showing any progress. On the contrary, his counts were going down instead of up! I was worried sick.

Today, his counts showed some improvement in all but the platelets. This was encouraging - to say the least.

He is still quite weak. He can't do too much - although he tries. He is eating fairly well. I'm cooking all of our old favorite meals.

He's not allowed to drive. He has to avoid crowds, he shouldn't eat fast food or at restaurants.

He is working, a little, from home. He has a wonderful group of co-workers. We couldn't ask for more love and support - that's for sure.

Next week, we go back up to Duke for comprehensive testing and a consultation with his doctor, there. Maybe she'll lift some of the restrictions.

Meanwhile, we are happy to be home. I'm back at work and the weekends are full of grandsons, sons and the most beautiful, sweet daughters-in-law on the planet.

We are blessed.


Report created by: Linda
Date: 08/25/2004 at 6:20 p.m.
Subject: One Month Check-up

We just returned from Duke. Ross's Dr. is pleased with his progress. She has lifted restrictions, though she cautioned him to be careful. His immuune system remains compromised. He is still in danger of infection and bleeding.

He took over the driving a little, on the way back. His foot is as heavy as ever. (I should have had her check that.)

There are a couple of test results that won't be in until the end of the week. I'm to email Friday for those.

If everything checks out, we're to go back around the second week in October. Ross will undergo more tests and preparations for the second transplant.

We'll go to Paul's wedding, October 30th, spend a couple of days walking on the beach and just relaxing in a nice place with an ocean view. Then, we'll drive to Durham to face another procedure.

Meanwhile, all's well and there's no place like home.


Report created by: Linda
Date: 08/26/2004 at 3:56 p.m.
Subject: Romantic Ross

For our visit to Duke, yesterday, the doctor asked Ross to bring in a 24 hour urine sample. It was quite a large container!

When we woke up, in the morning, it was our 31st wedding anniversary. We held each other and Ross said, "Happy Anniversary, Cutie."

Then, he said," A loaf of bread, a jug of pee and Thou......."


Report created by: Linda
Date: 08/29/2004 at 4:49 p.m.
Subject: Ross's doctor

Ross's doctor has published a paper on the latest research and treatments for Multiple Myeloma.

You can access it online:

http://www.moffitt.usf.edu/pubs/ccj/v11n2/pdf/119.pdf


Report created by: Dow
Date: 09/07/2004 at 7:39 p.m.
Subject: Can't keep a good man down....

Ross has been going in to work everyday for the past week. He seems to know his limit and has been doing really well.

However, the other day, when I got home from school, he looked so tired! I couldn't help but comment - I suggested he go lay down for a little while.

It was then that he confessed - that afternoon, he'd played 9 holes of golf! Do you believe it? What a rascal!

He and Charlie plan to go to the company golf tournament for the day, on Saturday. I guess he had to test the waters.

He's made amazing progress.

Please keep up in your prayers. Thanks.


Report created by: Linda
Date: 10/24/2004 at 10:36 a.m.
Subject: Here we go, again!

We are busy getting ready for Paul's wedding and Ross's second bone marrow transplant. Life is a roller coaster ride. I have learned how to hang on tight.

We are also looking forward to seeing our dear friend Risto! He arrives this evening on a direct flight from Toronto. He will stay with us until we leave for the wedding on Thursday.

Paul and Kelley are getting married on a beautiful little island, called Ocracoke, off the coast of NC. Many of their friends and family - including Ross's sister's family and my sister, Janny's family - will be there. It will be really nice.

At the inn, Janny's and her husband's room shares a veranda with Ross's and mine. It has been over a year since we've seen each other; so there should be no end to the giggling out there.

Ross is to stand with Charlie as Paul's best men. They have been fitted for tuxes. I can't imagine a more handsome threesome.

We will stay in our nice little room by the sea until Tuesday, the 2nd of November. Then, we will drive directly to the Duke Bone Marrow Transplant Center in Durham.

Tuesday, Ross will receive a Hickman catheter. He is scheduled to receive the Maphalan (high dose chemo) on Wednesday. Thursday, they just monitor him and then, Friday, he receives his stem cell transplant.

The good news is: we know what's going to happen. The bad news is: we know what's going to happen.

We remain strong and positive - and very much in love. (God is good.)

Thanks for caring. I will keep y'all posted. :)




Report created by: Linda
Date: 11/03/2004 at 5:37 p.m.
Subject: First Day of Second Transplant

We arrived, Monday, after spending the weekend on Ocracoke Island. The weather there was perfect - sunny and warm. Kelley and Paul were married and we had such a good time - fishing, swimming, swinging in the hammock and just relaxing. Ross and Walt chipped golf balls around on the beach.

Tuesday, Ross began the day, here in Durham, with tests, a chest xray and a new catheter was inserted into his jugular. We returned to the apartment for dinner. While we were eating, Ross lifted his shirt to reveal a stream of blood running down his chest and belly.

I was aware of the possibility. Although it doesn't happen often (Thank God.) sometimes, these catheters cause bleeding that is hard to stop. We called the vascular radiology specialist and followed her advice. We couldn't stop the bleeding; so I drove him into the emergency room at the hospital.

They applied pressure to the site, took an xray and blood tests and watched him closely. Once I was sure he was going to be alright, I ran down the hall to check the results of the election. I continued to update Ross every half hour or so. We went home around 2:00am and slept like babies.

Today, we went in to the clinic - a tad bit late - and Ross received his high dose chemo. We know from experience that he won't begin to feel the ill effects for several days - at which time I intend to keep him well medicated. I'm not going to be shy this time. He may as well float through the worst part.

I will attempt to keep you up to date. Thanks for your love, your support and your prayers.


Report created by: Linda
Date: 11/05/2004 at 5:09 p.m.
Subject: Day one

Ross's own stem cells were successfully infused today. The procedure made him nauseous - as expected. I gave him his medication, faithfully, all day.

He and I just went for a 10 minute walk. He's doin' great.

During the transplant, I asked the nurse how the idea had occurred to someone - to kill off the marrow and reintroduce stem cells. They are infused peripherally. How did they know that the cells would migrate to the marrow? She said a couple of things that made me wonder more. She said that they still don't know exactly how the blood cells get to the marrow. Some researchers suggest that they have a sort of "homing device", built in.

Another nurse said that they discovered this tendency when they gave blood transfusions to mice whose marrow had been destroyed. (Essentially, that is what they do to these bone marrow patients, with the high dose chemo.) The use of stem cells is fairly recent. These are the baby cells that have yet to fully develop. They are more adaptable. Somehow they know to go to the center of the bone where they are needed. Pretty cool stuff.

So, for the next few days, we will watch Ross's blood levels drop. Then, we hope the stem cells will find their place and start growing.

Meanwhile, we are already looking forward to going home; but we have miles to go.........


Report created by: Linda
Date: 11/08/2004 at 3:27 p.m.
Subject: Day 3 (post transplant)

Ross is doing very well. He's fatigued and nauseated; but at tolerable levels. He's eating fairly well and we take walks everyday.

My new appraoch - that is to administer the anti-nausea drugs on schedule, before he gets sick - seems to be working, so far. He is showing the effects of being drugged, though. He is getting a little loopy.

Today, during our visit to the clinic, Ross leaned back in his chair and the headrest quickly dropped way down, while his foot rest flew up in the air. It was comical; but I didn't laugh right out loud. Not until he looked at me and calmly said "Rearranging the deck chairs on the Titanic."

He's so funny.

Nothing much to report. His blood counts will just continue to drop for the next 5 - 7 days.

We're hangin' in there - making the best of everyday and glad to be together. I'll try to keep you up to date.

Love,
Linda







Report created by: Linda
Date: 11/10/2004 at 12:59 a.m.
Subject: Day 5, post transplant

Today is sunny and brisk. We arrived back from the clinic at noon. Ross ate a good lunch and is resting.

There is a woman at the clinic, who had her second transplant on the same day as Ross did. Her first one was in late July. She has the same diagnosis of multiple myeloma; but hers presented quite differently. Her husband and her mom are here with her. (Seems to be a good idea to "tag team" as caregivers. That way, one can run errands while the other sits with the patient.) They are really good people - salt of the earth.

Anyway, we all noted that this go round seems to be a lot easier than the first. Both patients are experiencing much less nausea and fatigue. I sure hope this trend continues.

I am keeping track of Ross's meds on a chart, as before. There are quite a few. I noticed, the other day, that he always asks me, "What is this?" when I give him a pill. I always tell him - "prochlorparazine", or "levaquin" or "mycelex" - or whatever it happens to be. I didn't realize it at first; but he was pulling my leg. He has no idea what any of them are. So, now, I just make up a name. It amuses him. Today he had 250 mg. of "zeenalecadone" and then 500 mg. of "poopozeradine".

Seems we're BOTH getting loopy.

Thanks for the notes of encouragement. We are doin' great.




Report created by: Linda
Date: 11/13/2004 at 8:21 p.m.
Subject: Day 8

For the past couple of days, Ross's blood tests show that he has NO white blood cells. This is as planned. The Maphalan has destroyed his bone marrow. Now, we wait and pray for those stem cells to engraft.

Ross's throat is pretty sore. This is probably due to the effect the chemo has on the mucous membranes. He had the same problem, last time. His blood pressure is a little low and he is fatigued - but this is NOTHING like the first transplant. He is so much stronger and happier, this time.

He is eating three meals a day. I also have "Tea Time" every afternoon. Just before tea, we take a walk around the apartment complex. It's pretty, here. The development is surrounded by woods and the pond is very active with birds. Today, as we left for our walk, there were 14 Canada Geese right at our back door!

We continue to go in to the clinic every morning. If there is any change, I will post the news, here. Keep the home fires burning.


Love,
Linda



Report created by: Linda
Date: 11/15/2004 at 11:36 a.m.
Subject: Good News

This morning, Ross's bloodwork showed that his marrow has begun to produce cells! It is a modest beginning; but encouraging, nevertheless.

We are doing everything possible to keep him healthy and stress-free - trying to provide optimum conditons for healing. He's napping, now.

When anyone asks Ross what he does, he says, "I'm in cells."

More news when it happens.

Linda


Report created by: Linda
Date: 11/17/2004 at 12:19 a.m.
Subject: Better and Better

Yesterday evening, Ross asked me to get his golf clubs out of the truck. He cleaned them and then he asked me where the telephone book was kept. I heard him talking on the phone. He hung up and said," There's a driving range just down the street. I want to go and hit some balls."

I was so nervous! I was afraid he would hurt himself or get too tired or sick. He was determined to go and there is NO talking to him when he sets his mind to something.

He took little rests, throughout; but he hit a whole bucket of balls! When he finished, he said,"That was fun!"

I knew then, that he was improving rapidly.

This morning, we are told that his white blood cell count is up over 6 - from zero, just two days ago. Even his platelets are increasing on their own. We are told that if all looks good, tomorrow, we can go HOME!!!!!

I can't believe it! But just as soon as I get off this computer, I am going to start packing.

Home for Thanksgiving. Thank God, thank God, thank God........


Report created by: Linda
Date: 11/18/2004 at 9:30 p.m.
Subject: Home Sweet Home

This morning, Ross's blood work showed a considerable improvement. Even his platelets and red blood cells are kickin' in!

So they released him to go home.

We just got back from a quick visit to see the grandchildren. Henry was all excited to show me the "Hocapontas" movie.

Tomorrow, Bud and Mary will bring our dog, Lukey, home to us.

Monday, we go to see our Charlotte oncologist. Ross's blood will be monitored closely for a while. We go back to Duke in 4 weeks.

We're so glad to be home!

Lots to be thankful for this year.

I'll be in touch.

Linda


Report created by: Linda
Date: 11/24/2004 at 10:52 a.m.
Subject: Thanksgiving

We have been home for almost a week, now. Ross and I went to see his oncologist on Monday. The doctor said that Ross is who they'd point to as an example of how things are supposed to work.

He's doing very well - still weak and he tires easily; but that's to be expected. We are looking forward to tomorrow and Thanksgiving. The whole family will get together. We are so blessed!

I will write, again, if there is any big change. Otherwise, Happy Holidays!! And thanks for all the love, prayers and support!


Report created by: Linda
Date: 12/15/2004 at 12:18 a.m.
Subject: Merry Christmas, y'all!


 
Just a quick note to wish you the Merriest Christmas and all the best for a wonderful New Year.

Thanks again, for all the love and support.

Ross and Linda


Report created by: Linda
Date: 12/29/2004 at 3:48 p.m.
Subject: A New Year

We just got home from Ross's follow-up visit to Duke. They took blood, then took some more. Then they drilled into his hip to aspirate some bone marrow for testing - no fun. This time, though, he did opt for the premeds; so it wasn't quite so intense.

The initial results from his bloodwork show everything continuing to slowly move towards the normal ranges.

The results from the more comprehensive tests - including the urinalysis and marrow biopsy - will not be available for a few more days.

The doctor made an interesting remark as we were about to leave. She said that whatever these tests show is not significant, in her opinion. The real measure comes in several months when we will return to do them all over again. It would take some time for any myeloma cells to show up.

In the meantime, we will savor every moment together and with our family and friends. And shouldn't we all do that, anyway?

Call us, come see us or write. We love to hear from you.

Happy New Year to you and those you love!




Report created by: Linda
Date: 01/09/2005 at 10:48 a.m.
Subject: "Randomized"

Results from all of the tests show everything is clear. This establishes a baseline to be compared to future tests. Like the doctor said, it's too early -- these tests aren't really effective as a prognostic tool.

Ross also received word that he was "randomized" into the group that is to take Thalidomide and Dexamethazone (a steroid) for these six months following the second transplant.

The other possibility was that he would be "observed" for that time. He isn't thrilled with the idea. The drugs are not without side effects. I do hope that he won't have to take as much as he did last spring.

He agreed last year, when he signed onto this study, that he would do whatever they wanted him to do. He is a man of his word.

Slowly but surely, he is getting stronger. He played golf, last week and shot a 91! Today, he and Charlie are putting the finishing touches on a playhouse for the grandsons. (NOT a storage shed for Charlie.)

Things are getting back to normal and that is looking pretty darn good to me.

Keep in touch and thanks for caring.

Linda






Report created by: Linda
Date: 03/25/2005 at 5:51 p.m.
Subject: Latest Test Results

Ross and I went to Durham, NC, to see his doctor at Duke. He underwent a series of tests, there, and so far, they have all come back normal. It looks like he is in remission! What wonderful news!

If anything changes, I will be sure to let you know.

Thanks, again, for the kind words, thoughts and prayers. We continue to be strong because we love each other and because we have such good people in our life.

As you may already know, my sister Maggie has been diagnosed with terminal cancer. She is in the Queen Elizabeth hospital in Charlottetown, PEI.

I went to see her as soon as I heard. She is amazing! So strong and funny and always the nurse - comforting everyone around her.

Please remember her and Dan in your prayers.

Thanks, again.
Linda

Maggie passed away at about 2:00 pm on April 20th, 2005.


Report created by: Linda
Date: 06/10/2005 at 4:04 p.m.
Subject: Latest Test Results

On Wednesday, June 1st, Ross went back to the Duke Bone Marrow Transplant Clinic. They ran the whole battery of tests - bone marrow biopsy, marrow aspiration, bone survey, urinalysis and a bunch of blood work.

He has a slight M spike - which was revealed in a sophisticated blood test that determines if he has any abnormal proteins. These proteins are a by product of cancer cell activity. It is only very slight and has decreased since the last test. (from 0.62 to 0.47)

His bone marrow biopsy and urinalysis were negative for myeloma. This is EXCELLENT news.

He continues to get stronger - gaining muscle back in his arms and legs and growing hair. (He's back to his normal, hairy self.)

Our next visit for the same tests, is in three months - first week of September. I'll let you know if there is anything to report, then.

Thanks, again, for the support, good thoughts and prayers. It has made all the difference.

Love,
Linda


Report created by: Linda
Date: 08/24/2005 at 8:22 p.m.
Subject: Check-up at Duke

Ross and I went up to Duke Medical Center, today. His blood work had been looking a little suspicious; so they wanted to check him out.

Good news - Ross is a-okay. Seems the Thalidomide and the
Dexamethazone are giving him a bit of a hard time; but -according to the doctor - he is doing great.

He only has to stay on that stuff for a few more months.

She doesn't want to see him again until November. Halleluiah!

Tomorrow, we celebrate our 32nd anniversary. I think I'll break out that bottle of Dom I've been saving.

Keep in touch. We think of you often.


Report created by: Linda
Date: 11/23/2005 at 11:15 a.m.
Subject: One Year Check-up

Merry Christmas from a happy family !
 
It has been a year since Ross's last bone marrow transplant. We went to Duke last week for the whole battery of tests - bone survey, chest xray, blood work, bone marrow aspiration, urinalysis, etc.....

Although we don't yet have all of the results, most of them have come back and indicate that Ross remains in remission. We don't have to go back for tests until January.

His bone marrow tested negative for myeloma. His blood has a very slight M spike. He remains a little anemic and we are trying to help with some adjustments to his diet.

He still struggles with several side effects from the drugs he is on. He takes Thalidomide daily, and high dose steroids four days each month. He's been on antibiotics for a year.

He has some numbness, pain and weakness in his legs and he fights fatigue. Some of this is also due to the damage to his spine.

Overall, though, he's doing great - golfing and working and playing with his grandsons. He's the best Grandpa a kid could ever want.

We are so relieved - needless to say. This will be another wonderful Thanksgiving. The whole family will be here.

We'll be thinking of our old friends and wishing you all the best this Christmas. Thank you for your continued prayers and support.

Love, Linda


Report created by: Linda
Date: 03/07/2006 at 09:14 a.m.
Subject: Just so you know.....

Ross is doing really, really well. He works too much, plays golf regularly, takes time out for his grandsons, keeps my bird feeders filled and looks great.

He goes to his oncologist on March 9th for the usual blood work and then, back to Duke in May for the whole battery of tests - pokings and proddings.

He remains in complete remission and we are ever so grateful.


Report created by: Linda
Date: 08/19/2006 at 06:30 a.m.
Subject: New problem

When we returned home from vacation, Ross had a lesion removed from his back. Turns out, he has at least, 3rd stage melanoma!

My doctor explained to me that although this is not a result of the Mutiple Myeloma, it may be an indication of a flawed immune system.

On August 29th, he will undergo surgery. The doctor will excise more tissue from around the site, and remove a pair of lymph nodes. This tissue will be tested to determine if the cancer has spread.

We remain strong, knowing that we love each other, we have a wonderful, close-knit family, a legion of friends and a loving God.

Thanks, again, for all of your good thoughts and prayers. I'll be in touch.


Report created by: Linda
Date: 08/30/2006 at 07:59 a.m.
Subject: Melanoma Surgery

As these things go, Ross's procedure went well. I learned a lot.

He went to nuclear medicine, first, where they injected the site with a radioactive dye. They watched the dye under a scanner to determine into which lymph nodes the site drained. You would think that they could just map out the body and say, "If the melanoma is located here, then it will drain to these lymph nodes over here." But the pattern is individual.

Ross's melanoma site drained into his armpit. The technician told me that some patients' might drain to the neck or the groin or to more than one place! In the past, this made node extraction a scary guessing game. Did they remove too many? Not enough? Now, they can see exactly which lymph nodes to go after.

The scan produced a picture of his body that looked a bit like pointillism - in shades of grays and black. The melanoma site was glowing brightly white, as was the lymph node under his arm.

Once the doctor marked the location of the lymph nodes with a sharpie, he went into surgery. They used another dye for a more specific read and extracted lymph nodes from under his arm as well as a slab from around the melanoma site. Then, they grafted a patch of skin from his thigh to close the hole in his back.

He suffered from nausea after surgery and it took some time and good drugs to get his stomach settled down.

He received wonderful care at Carolina's Medical Center. The staff there regulary went above and beyond. I was impressed.

I spoke with his surgeon who said that nothing looked suspicious. He is of the opinion that there is an 80% chance that the cancer has not spread. (From his lips to God's ears.)

We got home in the late afternoon and he slept through the rest of Tuesday. He woke up early this morning and said something about going into work; but of course, that is out of the question at this time. I'm guarding the door.

We are to go back to see the surgeon on Wednesday of next week. He'll have the pathology report by then and I'll let you know.

Thanks for caring.

Love,
Linda


Report created by: Linda
Date: 09/06/2006 at 12:39 a.m.
Subject: New surgery

We talked to Ross's surgeon, this morning, and he told us that the pathology report showed cancer in a lymph node under Ross's arm. The cancer is still considered to be in 3rd stage at this point.

They want to excise more lymph nodes from under his arm. That will be schedluled for within the next couple of weeks. In the meantime, he will have a body scan to look for anything suspicious, elsewhere.

This next surgery will be more complicated, requiring an overnight hospital stay and a couple of weeks for recovery. We're hoping that the excised lymph nodes will all be free and clear of cancer. They are not proposing any other treatment options.

Thanks, again, for your kind words, thoughts and prayers. We appreciate our friends and family, more than you can imagine.


Report created by: Linda
Date: 09/11/2006 at 6:05 p.m.
Subject: PET CT Scan results

Ross's oncologist's nurse called this afternoon, to report the findings from his PET CT scan.

She told me that they found no evidence of melanoma! Yay!!!

She said that there were a few spots that they determined to be the old myeloma sites which had already been treated.

His surgery is still on for the 19th. They will remove as many lymph nodes as possible from under his arm and examine them for cancer cells. (As I understand it, the PET scan would not show activity on a microscopic level.)

I will try to keep you informed. Thanks, again, for caring.


Report created by: Linda
Date: 09/27/2006 at 2:24 p.m.
Subject: Another Battle Won

We saw Ross's surgeon, today, who informed us that none of the excised lymph nodes revealed any cancer.

Ross had the two drains removed from under his arm - a big relief.

On to the next problem: Ross has a mass growing on the left side of his jaw and enlarged lymph nodes, below that, in his neck. His cheek and mouth on that side are numb. He is scheduled for an MRI on Friday (Sept. 29th).

I'll let you know what they find.


Report created by: Linda
Date: 10/04/2006 at 06:35 a.m.
Subject: New Hurdle

Ross's oncologist called yesterday, to report that the mass on his jaw is indeed, a malignancy.

It was first thought to be a recurring Myeloma; but now, they are not sure. It may be the Melanoma or even some third kind of cancer!

Ross hasn't exactly been typical.

Today, he is to have a Fine Needle Aspiration to determine what cancer we are dealing with. Tomorrow, he is scheduled to see the oncology radiologist and start treatments.

We're still in shock, I think.

Please keep our family in your prayers - especially Ross. He is such a good man.


Report created by: Linda
Date: 10/05/2006 at 8:16 p.m.
Subject: Myeloma

We went to see Dr. McInnis, today. He's the radiology oncologist at the Presbyterian Hospital. He told us that the tumor on Ross's jaw is Multiple Myeloma.

The tumor has been growing quickly and causing considerable pain. The good news is that Multiple Myeloma tumors respond well to radiation. Ross will soon get some relief.

Short term: Ross will begin radiation treatments on Wednesday. They anticipate that he will need ten rounds.

Long term: We have not yet discussed a plan of action beyond the radiation. His oncologist - Dr. Taylor - did say that if it turned out to be Myeloma, then he would defer to the doctors at Duke.

Lovely bright moon, tonight - almost full. We went for a nice, long walk. Ross is a rock. After all he's been through, he still makes me laugh and loves to talk about our grandkids. God love him.

I'll write again when there is some news.


Report created by: Linda
Date: 10/18/2006 at 08:15 a.m.
Subject: Radiation Treatments

Ross is receiving daily radiation treatments. He gets a break on Saturday and Sunday. Dr. McInnis anticipates that these treatments will be continue through the 27th.

During the preparations, they found another myeloma tumor on Ross's skull and are treating that, as well as the one on his jaw.

After the radiation treatments are completed, Ross's oncologist here, and his physician at Duke will decide what further treatments are appropriate.

Ross remains upbeat and undaunted. He calls the radiation treatments "going to the tanning booth". He played 9 holes of golf, the other day and shot a 41. What a guy!

As always, your prayers are appreciated.


Report created by: Linda
Date: 10/31/2006 at 10:50 a.m.
Subject: Latest News

The past few days have been pretty difficult for Ross. The radiation treatments have left his mouth and throat very raw and painful. He is also suffering from fatigue and nausea.

Yesterday, we met with his oncologist in Charlotte. Dr. Taylor ordered a bone scan and a bone marrow biopsy, as well as the usual blood tests.

When all the results are in (in the next couple of days) there are two possibilities: The first, is that the tumors on his jaw and skull were isolated outbreaks of the myeloma. In that case, Ross would probably be put on a chemo regime utilizing the new drug, lenalidomide (called "Revlimid").

If the tests show that the disease is progressing, then he will probably be put on bortezomib ("Velcade"). This kind of chemo is more aggressive and therefore, there is a higher degree of toxidity resulting in adverse side effects.

Ross's case is unique. His doctors must also remain watchful for the melanoma. Anything that they do to suppress the myeloma might diminish his resistance to melanoma.

Next step: The test results will be gathered and sent to Dr. Gasparetto at Duke. Ross has a little time to let his mouth heal and to have his other cataract surgery - on election day. On November 15th, we'll go back up to Duke to hear what treatment options they have to offer.

As always, thank you for your love and support. I'll try to keep you up to date.


Report created by: Linda
Date: 11/13/2006 at 1:17 p.m.
Subject: Best, possible news

Ross and I just got back from the oncologist who informed us that Ross's bone marrow aspiration showed NO sign of Myeloma!!! This is highly unusual and even surprised the doctor.

He said that the cancer on Ross's skull, jaw and now on his ribs are not evidence of a systemic outbreak as they had suspected. They are plasma cytomas (malignant tomors) that can be treated with radiation. Ross will probably be put on the milder chemo which has little or no side effects. This could keep the disease at bay for another year or two.

This morning, we were braced for the worst, possible. Now, we are giddy with hope.

Thought you'd like to know.


Report created by: Linda
Date: 11/15/2006 at 8:57 p.m.
Subject: Reality Bites

For the past two years, we have been on a roller coaster ride. Seems that hasn't changed.

We went to Duke, today, and the balloon from Monday's news has been somewhat deflated. Not completely; but somewhat.

Dr. Gasparetto is a myeloma specialist. She was not surprised that the bone marrow tested clean. She is concerned that the plasmacytomae have been popping up so quickly (on his jaw, skull and ribs). She wants to first treat the spot on his ribs with radiation and then decide on a systemic treatment (chemo) to keep the myeloma from progressing.

There are a couple of complications before we can proceed. Firstly, his platelet count is very low and will probably go lower with the radiation. That has to be watched carefully. Secondly, she does not want the treatments aimed at the myeloma to then make him vulnerable to the melanoma.
She has referred him to a melanoma specialist at Duke. Her reasoning is that two heads are better than one. Together, they might be able to treat both diseases.

Ross will begin with the radiation treatments for his ribs. On Monday, we will get the results from further bloodwork and urinalysis that will give Dr. Gasparetto a clearer picture of the disease's progress.

Ross is a unique case. (I've known that for years.)

We continue to hope for the best.

Thanks for caring.

Love,
Linda


Report created by: Linda
Date: 11/22/2006 at 10:32 p.m.
Subject: Thanksgiving

Yesterday, Ross had to have the catact surgery re-done in his left eye. He's experiencing quite a bit of pain and light sensitivity. I just wish he could catch a break.

Monday, he is to begin the first of 10 rounds of radiation to treat that new spot on his ribs. They also found some spots on his arms and legs that are yet too small to treat with radiation.

On Wednesday he has an appointment with a melanoma specialist at Duke.

His sister, Muriel, her husband, Walt, their daughter, Tamara and her little boy, Aiden, came all the way from Canada to help us celebrate Thanksgiving.

Paul and Kelley and their two dogs will arrive tomorrow. Of course, Charlie and (the pregnant!) Kathleen and their three little guys will walk down the road and spend the day with us as well.

Our family and friends are remarkable. We are certainly blessed.

Happy Thanksgiving, everybody. I'll be in touch.


Report created by: Linda
Date: 11/29/2006 at 4:31 p.m.
Subject: Melanoma specialist

We had an amazing Thanksgiving - probably the best ever. Everyone was here. Lots of laughs and good food - oh, my, goodness!

Some time before Christmas, we're planning to drive up to Asheville with Charlie and Kathleen and the grandchildren so we can exchange gifts with Paul and Kelley. They go to Hyde County and spend Christmas with her family, there.

We just got in from another trip up to Duke. This time, to see the melanoma specialist. Every physician we have seen has a different approach as far as how to deliver information and how much information to deliver. Dr. Gollob was a veritable fountain. He was very straight forward. For example, he said that Ross's melanoma - a stage 3B - gives Ross a 5 year survival expectancy of 50%.

Even with that, the Multiple Myeloma trumps the melanoma. As far as he's concerned, when deciding what treatment to administer, there should be little or no consideration given to the melanoma at this time. He is, however, recommending a PET scan every 4 months to watch for the development of melanoma tumors.

Ross began his radiation treatments this week, for the plasmacytoma on his ribs. He is a little more tired; but no significant side effects as yet. When the ten rounds of radiation are completed, we will go back to his oncologist in Charlotte and then, probably back to the Myeloma specialist at Duke for further, systemic, treatment. That will, most likely, take the form of some sort of chemo.

Thank you, so much, for your love, support and prayers. I'll be in touch.


Report created by: Linda
Date: 12/08/2006 at 06:51 a.m.
Subject: The Plan

We went into Charlotte, yesterday, to speak with Ross's oncologist. Dr. Taylor is a kind, older gentleman. He has never failed to give us the most optimistic view. (I'm learning.)

He said that except for some lab work (blood tests) in two weeks, Ross will get a break over the Christmas holidays. He will most likely begin chemotherapy in the new year.

There are two kinds of chemo, possible. One is Velcade. It is highly effective; but results in more side effects. We would prefer to see him treated with the Revlimid - a new and very effective drug - as it is so much more easily tolerated.

At any rate, his blood counts are too low, right now, to attempt any aggressive chemo. His white blood cells are low as are his platelets - the result of so much radiation. His last radiation treatment should be today. (I say "should" because these plasma cytomae are popping up so quickly! He goes in for another spinal MRI on Monday. Hopefully, they don't find any more.)

The next few weeks - without radiation - should give his blood time to recover and we will settle on a plan with Dr. Taylor at our appointment, January 4th.

Ross remains the sweetest, funniest, most focused man on the planet. He gets up early and goes to work, everyday. Somehow, he's managed to maintain that clever, quick, dry wit that has me lose all sense of composure and sends me into a fit of the giggles on a regular basis. God love him.

If there is any news in the meantime, I will write. If not, then have a wonderful Christmas. Enjoy your family and friends and remember to be nice to each other.

Talk to you in 2007!

Love, Linda



Report created by: Linda
Date: 12/12/2006 at 2:59 p.m.
Subject: The Plan - Revised

Yesterday's MRI revealed another tumor on Ross's spine. He began radiation treatments, today.

I'm not sure what this means, in terms of his low blood counts. We had hoped for some time so that they could recover before the chemo treatments began. It's hard not to be disappointed.

At any rate, he should be able to wrap-up this series before Christmas day.

I'll be in touch if there are any further developments.

Linda


Report created by: Linda
Date: 01/04/2007 at 2:02 p.m.
Subject: One day at a time

We just returned from an appointment with the oncologist. Ross's blood was drawn when we arrived and the tests showed that his platelet count has gone down even further. His white blood cell count is low but hasn't decreased since our last visit.

Dr. Taylor said that he cannot administer chemo unless Ross's platelet count increases.

Ross also complained of acute pain in his ribs - the left side, this time. Ross said it is some of the worst pain he's had, so far. (!) Dr. Taylor is quite sure that it is another tumor. He told Ross that the best way to get some relief from the pain is to radiate the area.

He sent us directly for x-rays. Ross has an appointment with the radiology oncolgist, tomorrow morning.

He will most likely undergo another series of 10 -12 radiation treatments. He has another appointment with Dr. Taylor - the oncologist - in two weeks.

Ross continues to lose weight; so he is getting rather thin. He is suffering from pain and fatigue. Even so, you should know that he goes in to the office everyday and is still his sweet self - thoughtful and funny.

I'll write again if there is any significant news.


Report created by: Linda
Date: 01/05/2007 at 1:23 p.m.
Subject: Kindergarten Cop

Remember Arnold Shwarzenegger's line? "It's not a tumor!" Well, that's what the radiologist said.

Ross has fractured a rib. This is a common complication with Multiple Myeloma. It results in a condition not unlike osteoporosis. He just has to be more careful.

He has good pain medication; so he can get some relief that way.

At least he won't be getting any radiation treatments for a while.

We are still scheduled to see his oncologist on the 17th. If anything else happens, in the meantime, I'll let you know.




Report created by: Linda
Date: 01/17/2007 at 2:31 p.m.
Subject: We Wait

Ross and I met with Dr. Taylor, today. The results of today's blood work show an increase in his platelet count. However, it is still not high enough for the doctor to safely administer chemotherapy.

Ross will go back next week for more blood tests and again the following week, if necessary.

Once his platelet count is in the acceptable range(>80), Dr. Taylor intends to prescribe Revlimid. Hopefully, it won't be too long before this can occur.

It's a tricky situation. Right now, his blood counts are recovering from the radiation. However, the cancer, itself, can cause the platelet count to decrease, if left unchecked for very long. So, we wait.

Meanwhile, Ross has contracted some virus (nasal congestion, cough) and he also has conjunctivitis; but his fractured rib isn't bothering him so much, anymore.

Thank you for all of your well wishes. We appreciate the good thoughts and prayers. I'll let you know if and when there is something new to report.


Report created by: Linda
Date: 01/25/2007 at 6:16 p.m.
Subject: Still Waiting

Results from Ross's blood work, yesterday, show a one point decrease in his platelets. Other numbers indicate that he is anemic as well.

He has been suffering with this cold/flu for two weeks, now. The doctor prescribed an antibiotic and I was instructed to begin administering it at the first sign of fever.

His temperature has remained normal; but just before we went to bed, last night , I checked and he had a low-grade fever. I ran out the door and drove to the drugstore in my pajamas. I managed to get the Rx filled just moments before they closed. Thank God for drive-thru windows!

He was very fatigued, today, and spent a good part of it in bed - although he did manage to go in to the office for a few hours. He never ceases to amaze.

His oncologist had a conference with the doctor at Duke and they have decided to go ahead with a low dose of the Revlimid - despite his critically low platelet counts. That should start Monday.

As my dad would say, "I wonder what's on the wind". No sense worrying, though. It's all in God's hands.

Thanks for listening. Keep in touch and I'll do the same.


Report created by: Linda
Date: 02/01/2007 at 09:59 a.m.
Subject: Chemo

We met with Dr. Taylor, in Charlotte, yesterday. Ross's platelets were slightly higher at 68. His white blood cell count had gone down to 2.5.

Both the doctor from Duke and Dr. Taylor feel that a low dose of Revlimid might be beneficial. As it is a fairly new drug and a Thalidomide derivative, there are all kinds of required paperwork. That was completed, yesterday, so he should get started on the chemo today or tomorrow. It is taken as a daily pill. It's supposed to be well-tolerated - especially at this low dose; so hopefully, he won't suffer any awful side effects.

Dr. Taylor said that they will discontinue administering the Revlimid if his counts drop too low. He said they can take him off and start back up again as often as they need to. He said that Ross will be on Revlimid for several months.

He also said that they may have to radiate if or when more plasma cytoma pop up. So, Ross has to be less stoic and let him know if he gets a new pain that would indicate a tumor on a bone. He told us that, unfortunately, they can also develop in soft tissue, anywhere, and when they do there are few, if any symptoms.

Hopefully, the Revlimid will keep the cancer at bay.

Meanwhile, Ross continues to go to work everyday. He's tired when he gets home and ususally goes to bed for a while. He has gotten over that flu and his rib seems to have healed; so he feels a lot better, now.

I will write again, when there's news.


Report created by: Linda
Date: 02/16/2007 at 2:30 p.m.
Subject: Update

Ross started on Revlimid, earlier this week. It's a pill that he takes once a day. It will lower his platelet count; so the doctor will take him off of it when necessary.

He has his blood tested weekly. Wednesday's test results show that his platelet count came up a bit, to 68, and his white blood cell count is holding steady.

He also needed x-rays, Wednesday. He complained of new pain in his right side. He has several newly fractured ribs and one in the process of healing.

He still gets up every morning and goes in to the office! He is funny and sweet and thoughtful, as always, and remains undaunted.

We just celebrated our 37th Valentine's Day together. Oooooh. Ain't love grand? Hope yours was sweet.

Linda


Report created by: Linda
Date: 03/01/2007 at 08:49 a.m.
Subject: This week

Yesterday, Ross and I had an appointment with Dr. Taylor. It seemed to me that Dr. Taylor was most concerned with Ross's fractured ribs and the resulting pain and muscle spasms. Ross has trouble sleeping at night, as a result.

The doctor had a few suggestions including a patch that is applied directly to the ribs in order to numb the area.

Ross has pain on both sides, now and Dr. Taylor suggested that they may have to radiate the areas involved if they don't get better, soon.

The nurse brought in the results from the blood tests. (Amazing what they can do - the blood is drawn and run through a computerized analysis and within minutes, the results are printed off!) The tests show that Ross's platelets have dropped to 60, his white blood cell count is down to 2.1 and his hemaglobin, hematocrit, red blood cell counts and a few others are also out of the normal ranges, now.

Dr. Taylor decided that Ross will complete this round of chemo - five more days. Then, as is the normal routine for Revlimid, he will not take it for a week. Hopefully, his counts will recover enough so that he can resume therapy.

Ross left for work, this morning, as usual. He has lost more weight and is easily fatigued; but he keeps on keepin' on. The rest of us could sure learn a lesson or two from this rock of a human being. Our little problems seem so petty in comparison. He never complains. He works everyday and remains as funny and kind and gentle as ever. I love him so much. I'm so lucky.

Thanks for keeping us in your prayers. I'll write again, later, when there's news.


Report created by: Linda
Date: 03/09/2007 at 09:08 a.m.
Subject: New developments

Ross had his follow-up visit with the dermatologist on Friday. They excised several suspicious spots.

Yesterday, they called. His pathology report stated that the four excisions taken from his back were all melanoma - 3rd stage. The one from his face was just a squamous cell.

They had already made an appointment for him with the surgeon for Wed. at 11:00.

I got busy and had the oncologist's office make an appoinment for a PET scan. I figured the surgeon will order one, anyway; so I thought it would be better to get that information for him ahead of time. So, his PET scan is on Monday at 11:00. From that, we will be able to see if the cancer has metasticized to any vital organs.

When I broke the news to him, last evening, he didn't seem surprised. He did say that he had suspected something. He said that he is in a lot of pain.

Ross also said that he wants to have his head scanned - something that has to be done with an MRI. He never asks for anything; so I think this may be significant. He is concerned about his neck and jaw.

He can ask Dr. Taylor to order an MRI when we see him on Friday (the 16th). Ross's blood will be drawn, then, and tested to see if his platelets have recovered enough so that he can tolerate more chemo - although with this latest development, those plans may change.

I was reading about some fairly new research that linked a gene abnomality to a suseptibility to multiple myeloma AND melanoma. There were environmental factors involved as well; but it was the very first link I'd seen between the two cancers. I gather Ross's case is far from usual. We always knew he was special.

This evening, Paul and Kelley and their two dogs are coming for the weekend. Charlie will be 31 on Monday. Where did the time go?

This weekend will be fun - a whole pile of silly Dows.

I'll let you know what happens this next week. Thanks for caring.

Love,
Linda


Report created by: Linda
Date: 03/14/2007 at 08:15 a.m.
Subject: In response

I am writing today in an attempt to dispel a misconception. It seems as though - from comments we've received - that some people are under the impression that we are wringing our hands and suffering through this trial. Not so.

Although my reports to the outside world often only consist of the "cold facts", this is not what Ross and I are all about. We rarely discuss his cancer - only when necessary. We take care of business - attending appointments, blood tests, scans and x-rays and treat them a bit like a date. We talk and laugh and enjoy our time together.

The lesson that we learned at the very beginning of this experience was to "live in the moment". Of course, that can't be accomplished 100% of the time; but to the extent that we do, we are much happier for it.

Please don't think that we are not enjoying life. We smile and laugh all the time. (How can you help but laugh when you're with Ross?) Love is good.

We appreciate your concern and as always, I will be in touch.


Report created by: Linda
Date: 03/16/2007 at 7:02 p.m.
Subject: Mixed bag of news

Ross had his PET scan, Monday, an appointment with the surgeon on Wednesday and his oncologist, today. On Monday, the 19th, he is also scheduled for a CT scan and x-rays. They will do a panoramic view of his shoulders, neck and head.

The news this week is a mixed bag - not the best; but not the worst, either. So far, this is what we've learned:

There were several spots (lytic lesions) on the bones in his torso area and on the bones in his pelvis, legs and arms. They also saw a nodule on his jugular area which is questionable.

I learned that there is no sure fire way to determine if these lesions are multiple myeloma or metastatic melanoma. They would have to biopsy all of them to be sure - which is impossible. The doctors do feel, however, that these spots are more likely due to multiple myeloma.

They have decided that Ross should refrain from his Revlimid and on the 27th of this month, he will undergo more surgery to excise the melanoma from his back.

Then, after he has had a few days to recover, they will consider resuming the chemotherapy (Revlimid).

Dr. Taylor also said that they will then discuss how best to treat both cancers. One option is, besides his Revlimid, to administer an immunotherapy which is fairly new and might help Ross's body produce more white blood cells.

His white blood cell count was low, today; but his platelets have bounced back nicely - to 99. He is limping and in pain from a possible fracture to his hip. Dr. Taylor said that Ross may need radiation to help relieve the pain and to arrest the disease in that spot. He sent Ross for x-rays directly after our appointment; so we should hear the results, Monday.

We are pluggin' ahead - one step at a time. No sense looking too far down the road.

My faith in miracles was restored this evening when Ross came home with a batch of fresh smelts - wild caught - from Canada! I am quite sure that there is a God in heaven and that He is good.

Peace. Out.


Report created by: Linda
Date: 03/23/2007 at 4:17 p.m.

We saw Dr. Kirsch, today, a radiology oncologist at Charlotte's Presbyterian hospital. Everyone we've dealt with, there, has been caring, articulate and professional. We are so impresseed with the level of care he's received.

The latest test results revealed a myeloma metastasis in Ross's throat - on his thyroid cartilage. The radiology onclogist tells us that this is very rare.

He will have to have it radiated as it would cause breathing problems if allowed to grow. However, it is not an emergency and can wait until Ross has had a bit of a chance to recover from his melanoma surgery - to take place this Tuesday, (March 27th) as planned.

During these treaments, he will have to take a break from his Revlimid.

The doctor said that they will keep treating him with radiation as these lesions and tumors grow and cause pain. He is also taking pain medication, occasionally - especially at night.

Nevertheless, he remains in good spirits - positive and funny. Good ol' Wossi.





Report created by: Linda
Date: 03/27/2007 at 3:20 p.m.
Subject: melanoma surgery

This morning was difficult for Ross as he is experiencing quite a bit of bone pain - several new spots. It was hard for him to walk.

We went to the hospital at 5:30 am..

The surgeon came out to talk to me after the excision was completed. He said that it had gone well. He had to take quite a bit more, this time - including some muscle.

In order to close the hole that they left in his back, they took a skin graft from his right leg - near the original site. It is three to four times bigger this time.

When his eyes opened, I asked Ross how he was doin'. He said, "Good. They found a chip on my shoulder; but I think they got it all."

He had some trouble with bleeding and a sore eye - guess he poked himself as he was recovering from the anesthetic. Poor Ross! It was his eye, at one point, that was the most painful!

We seem to have gotten the bleeding under control and we have good medication for the pain. He ate a little this afternoon and said that he doesn't feel too bad.

We're at home, now and he is resting.

I had better go and check on him. As always, I'll write again, when there's news.


Report created by: Linda
Date: 04/08/2007 at 11:13 a.m.
Subject: Easter Sunday 2007

Happy Easter! We are looking forward to Easter dinner with the grandkids, this evening.

We have just enjoyed a visit from Gary and Liz. They drove all the way from Sudbury to see us. They spent their whole visit working. They raked, mulched and mowed. Liz is the weed-whackenest woman I have ever seen! Our yard looks so nice and our pool is uncovered and ready for the grandkids - thanks to two of the best people on the planet.

Ross is recovering from his melanoma surgery. He goes back to see the surgeon on Wednesday; but has already been given the go-ahead for his radiation treatments. The result will be some relief from the bone pain he's experiencing.

He has several areas that need treatment - including his ribs, pelvis and thyroid. He has an appointment with the radiology oncologist on Wednesday. Once they are completed - barring any more painful developments and as soon as his blood counts recover, he should go back on the Revlimid.

Thanks for the love and the prayers. I'll be in touch.


Report created by: Linda
Date: 04/19/2007 at 12:17 a.m.
Subject: Radiation underway

Ross is undergoing radiation treatments, everyday. I counted this morning and there are 11 spots marked - on his ribs, hip and thyroid. They zap them all, everyday.

They marked the spots with different colored circles with lines crossing through them. They're drawn on his body with marker and then, covered over with a plastic tape to keep them from being washed off. They look very strange. Ross told the radiology oncologist that a bright light filled his bedroom just before the space aliens abducted him. Dr. McInnis replied, "Yes. And they had big heads and they took your dog."

The graft on his melanoma excision site (on his back) did not take as well as we'd have liked. The surgeon says it may be a while before it heals. I'm playing nurse and changing the dressing twice a day. Ross flirts incessantly with me during every procedure. He's such a nut!

He will see the surgeon again in three weeks and he has an appointment with the oncologist on Monday, the 30th of April.

I am so proud of Ross. What an amazing, unselfish attitude! He is so strong and so good. Ernie (2 1/2 years old) said it best when he said, "Grandpa is my championship."


Report created by: Linda
Date: 04/23/2007 at 09:05 a.m.
Subject: Our weekend

This past weekend, the whole family was here - plus Risto from Canada and Christophe (the kids call him "Uncle Frenchie") from France.

Henry (6yr. old) and Campbell (5 yr. old) christened my new canoe, paddling for miles - in our pool. What fun!

Ross was the head chef in charge of the seafood boil. Shrimp, crab legs, corn, cabossa, crawfish, potatoes, onions and spices - all cooked together. It was delicious.

We saunaed and swam all weekend. Risto must have been proud, as he built the sauna for us years ago. We sure enjoyed his visit - pretty tough to say good-bye.

Ross has another 5 days of radiation. He is obviously struggling. I'm not sure how much of his symptoms are side effects and how much is the disease. Nevertheless, he keeps that funny, good attitude.

Thursday morning, he asked me how I'd slept and I said, "Really well. I feel good."

He said, "Me, too. I don't feel so draggy, this morning."

I suggested that maybe, the radiation was helping to relieve the pain?

He replied, "No. It's because Sanjaya was finally eliminated."






Report created by: Linda
Date: 05/01/2007 at 12:19 a.m.
Subject: What it is

Ross and I met with his oncologist, Dr. Taylor, on Monday. The first thing they discussed was his arm. During Ross's recent series of radiation treatments, they discovered that he had lost 10% of the bone between his left shoulder and elbow. They gave him a blast of radiation to stop the cancer in that spot. The fact is - and Dr. Taylor acknowledged this - the cancer is growing quickly.

Dr. Taylor said that things are not going well. He suggested that we consider the more aggressive chemo - Velcade. Ross is to begin receiving injections on Monday.

The first thing Ross asked was, "Will I be able to continue working?" The doctor smiled at me a little and said yes, that he needed to be careful not to tire himself out.

He explained that part of the therapy will be to closely monitor Ross's blood counts. His platelet count was very low (42). They will attempt to boost platelet production with a drug - one of two possible. An interesting new development: Recent studies have indicated that this cell accelerator therapy may be effective in treating melanoma! So, if it works, his other cancer will be treated at the same time.

Dr. Taylor told me that the next two months are crucial. The cancer is growing quickly; so this is an attempt to slow it down.

He spoke to us about a prognosis and what would happen in the event that this attempt is not successful. He said that he would be honest with us and that we would have a "heart to heart" discussion and make some plans. That was hard for Ross to hear.

He has quite a lot of pain and weakness; but we have stronger medication and he is taking it when he needs it, now.
His sister, Muriel, her husband, Walt and their daughter, Paula and her two youngest children are here with us. We are having pool parties with the grandsons and enjoying our time together so much.

I have to get back to the company - I'll report in again next week.


Report created by: Linda
Date: 05/10/2007 at 10:48 a.m.
Subject: Waxing Philisophical

As I sit to write another report, I always wonder if I am communicating clearly. I don't suppose that there is any way, humanly possible, to fully describe our experience. Everyone that reads about us most likely takes away a little something different.

This struggle has taught me so much. There are a few essential concepts that I will always be grateful for having learned. One is the idea that we are not our bodies, nor certainly not our possessions. We're not our jobs. We are something much less tangible, yet much more powerful than those "things". And it is that part of another human being in which we fall in love.

Even though Ross has lost so much weight and cannot do everything he was once able to do, he is still my Wossi. I love him with all of my heart.

I watch people around us - living "normal" lives. Some - like my darling daughters-in-law are wise enough to know the importance of family and friends and make it a point to slow down and spend time with the ones they love. There is no dollar value for that kind of devotion. Its value is priceless and eternal.

Cultivate those relationships everyday. Then when your world is turned upside down by some difficulty or damned disease (and someday it will be - for all of us) then love will hold you up and carry you through.

That's what I've learned, anyway.

Ross had his first shot of Velcade on Monday. He got a shot of Neulasta (pegfilgrastin) on Tuesday to help build up his white blood cell and platelet counts - which are abysmally low.

For the next two weeks, he goes back in to have those blood cell counts checked. Hopefully, the damage done by the chemo will be counter-balanced by the Neulasta. Then on the 28th, he'll receive his second shot of Velcade.

Normally, (as if any of this could be called "normal") a regimen of Velcade would be a higher dose on days 1, 4 , 8 and 11, then a rest period of 10 days before beginning the series again - and this might go on for months.

I am very concerned that, with the current extent of his disease, this treatment will fall short of what he needs. I have faith in our doctors, though, and I am sure that they want to see him improve. I know that their choices are limited, considering his low blood counts.

He has begun to feel some side effects from the Velcade; but is always the trouper - stoic and brave.

I'll write again, when I have something new to report. Thanks for all the kind thoughts and prayers of support.






Report created by: Linda
Date: 05/20/2007 at 2:11 p.m.
Subject: One Day at a Time

Ross had his blood work done three times, this past week. The Neulasta seemed to stimulate production of his white blood cells - but that was only temporary. His platelet and white blood cell counts are both very low.

Dr. Taylor has indicated that if his platelet count reaches 21, they will give Ross a transfusion. We're hoping that his counts will start to increase on their own - an indication that his bone marrow is recovering and that the cancer is slowing down after the one chemo treatment.

He is trying to be brave; but those who know him and love him can see that he is getting discouraged. Still, he remains kind and funny, gentle and strong. In the face of so much pain and fatigue, he is a wonder.

We'll go back to his oncologist tomorrow, to have his blood drawn and tested, again.

Not much else to report. We're taking this one day at a time - hoping for a turnaround.

I'll let you know if anything changes.


Report created by: Linda
Date: 05/29/2007 at 6:45 p.m.
Subject: Today's Decision

This afternoon, we had an appoinment with Ross's oncologist, Dr. Taylor. Ross's blood counts have not improved - in fact, several are somewhat worse. His platlets were at 26, today, and his white blood cells are at 1.9. Several other counts are below normal. Dr. Taylor said that many patients with counts this low are feeling too bad to even come in for office visits. I know I've said this before; but Ross is amazing.

The doc seemed to be agonizing over the decision of whether or not to administer the Velcade. With blood counts like Ross's, there are serious risks associated with both the chemo and with not treating the cancer.

Finally, Dr. Taylor asked Ross what he wanted to do. Ross said that he would rather do something than do nothing. He wanted to try some more Velcade. "Besides, he said, "there's nothing else we can do, right?"

Dr. Taylor agreed that this is where we stand.

So, Ross - preferring action to inaction - received another infusion of Velcade this afternoon.

The Velcade usually results in a decrease of both platelets and white blood cells. As a result, we have to keep an eye out for bleeding and infection. I am trying not to become a nervous wreck. (So far, so good.)

After his treatment, I wanted to go home and lie down. Ross went to check on a job site.

He will go back to Dr. Taylor's office tomorrow, for another shot of Neulasta (to boost production of white blood cells) and then, again, at the beginning of next week for blood tests.

We can only wait and watch; but with so many good friends and family waiting and watching with us, we don't feel alone.

Thanks for caring. Keep in touch.


Report created by: Linda
Date: 06/22/2007 at 08:10 a.m.
Subject: never a dull moment

On Monday evening, I was pushing the little non-motor-mower around the poolside area and something stung my foot. Then, I was stung several more times, in rapid succession - on the feet and hands.

By the time I made it into the house, my lips and face were swelling. I knew that we had no Benadryl handy because I had looked for some recently. I called Charlie who - thank God - was home and who had some children's
liquid Benadryl.

He was here in a flash and had to help me drink a couple of spoonfuls as I was already pretty dysfuncional. He hoisted me into his van and rushed me to the hospital. The ride is 10 -12 minutes away - I was out cold for most of it. Charlie is trained in first aid and tried, on the way, to get a pulse but couldn't. Can you imagine! Poor Charlie!

I remember slipping away and thinking that I could die. It wasn't the least bit scary or sad. It was as natural and calm as can be. I did think that "I can't go, I need to take care of Ross". Then, everything went black.

Anyway, they were "Johnny on the Spot" at the hospital - had me on
adrenaline and steroids lickety-split. Still, it was some time before I
fully regained consciousness. I remember looking up into the doctor's face and saying "Oh, I'm back!"

The doctor laughed and told me that yes, my blood pressure was coming back up and that was good. He said that I had had the worst kind of allergic reaction - anaphylactic shock. They would keep me overnight because in many cases - about 30%, it turns out, the patient relapes after a few hours. I was monitored all night and sent home next morning.

Now, I have a medic alert watch on order. ( needed a watch - so two
birds.....) I am also going to see an allergist, to hopefully, de-sensitize me. I have several Epi-pens (for self-administering the adrenaline) and I NEVER leave home without one.

I hate this. It's not fair. I always took a sting like nothing - part of
being an outdoors woman. Now I live in fear. Hopefully the allergist can change that.

NEXT day, (Tuesday) I just got home and changed in time to head back into town with Ross to go to the oncologist's office. His blood counts are so low that the doctor was not able to administer the chemo. Instead, they decided to try a bloood transfusion. This, in hopes that at the least, they can make Ross feel better. He is in a lot more pain, he's very tired and weak and he is getting a little discouraged.

We will go back to see Dr. Taylor on Tues. for more blood tests. If he is feeling stronger and the counts have improved, then they will try more chemo. It is not realistic at this point to be terribly optimistic; but there is still some hope and I cling to that.

Today is Ross's birthday! He is 56. We're going to have a pool party with the little guys - hamburgers and hotdogs on Grampa's new grill (birthday and father's day gifts - combined) Everybody's excited.

The boys made a wonderful shirt for Ross. It says "Best Grandpa, hands down" and each of the boys hand prints are on it in different colors. He loves it. Ernie drew him a picture for father's day and gave him a pencil - that he picked out himself. The picture is of Ross and Ernie. They are both exactly the same, except Ross is bigger. Ross just loved that.

Well, I have written a short novel! I sold my anaphylactic shock story to the newspaper. So, something good came of it. You'll probably receive it when it's published. Sorry to be redundant.

I'm alive. Hope you are too.

Love,
Linda


Report created by: Linda
Date: 07/02/2007 at 2:03 p.m.
Subject: Hangin' in there

This past Tuesday, Ross and I went to see Dr. Taylor. Ross's counts were not significantly higher; but Dr. Taylor felt that we should try another infusion of the Velcade - which was administered the next day.

Then, Thursday, he received another shot of Neulasta to boost white blood cell production.

He'll go back to have his blood tested this Thursday (the 5th) and then, we see Dr. Taylor, again, on the 10th.

Meanwhile, Ross's namesake - little Ernie - turns 3 on July 5th. He is such an important part of our life. It's hard to imagine that he was born just a few days before Ross's first bone marrow transplant!

When people ask how we're doing, I tell them that we're hangin' in there as best we can. Then the grandsons come down for a swim and Ernie and I fill the birdfeeders together and Ross and the boys sit in the sauna and have a good talk. I really can't think of a better way to hang.






Report created by: Linda
Date: 07/10/2007 at 3:01 p.m.
Subject: Hope Springs Eternal

We just came home from an appointment with Dr. Taylor - Ross's oncologist. Ross's blood work is holding fairly steady.

Dr. Taylor seems to think that the transfusion helped and that the Velcade is keeping the myeloma at bay. He would also like to think that the Neulasta treatments are holding back the melanoma.

Even though he is struggling with quite a lot of pain in his pelvis and upper thighs, Ross feels a little stronger - evidenced by his longer days at the office.

So, they are going to try another blast of Velcade next week. They will follow-up with the Neulasta - for white blood cell production and Aranesp - for red blood cell production.

Ross continues to lose weight - a couple of pounds a week. We are doing our best to keep him eating and to fatten him up. Kathleen makes him these wonderful muffins and I cook everyday and use butter and cream and cheese. I would gladly share some of my extra weight with him. Unfortunately, it just doesn't work that way.

We're hangin' in there. One day at a time. We still snuggle and giggle and love each other so much. Ross says we were made for each other. He's right. We were.

Thanks for caring and for keeping in touch.

I'll report again, later, when there's news.


Report created by: Linda
Date: 07/23/2007 at 4:09 p.m.

This morning, a nurse called me with the results from last week's bone scan. Ross's cancer is spreading and agressively attacking his bones. So much so, that the report described his left femur as looking "moth eaten". He also has disease in his ribs, arms, other leg and other areas of his body.

There is considerable risk for breaks and fractures; so the nurse ordered him to stay off his feet until Wednesday morning, when we have an appointment to see Dr. Taylor.

Ross is showing the effects of a long, hard battle and is very discouraged right now. He has been so brave these past three years. This latest news is hard for him to process.

I don't know what will happen next; but I have no doubt that Dr. Taylor will answer our questions. I'll report again, in a couple of days.

Thanks for all your prayers and kind concern. We are not alone in this and our family and friends have made sure that we know it. Thank you so much.


Report created by: Linda
Date: 07/25/2007 at 3:31 p.m.

We have just returned from the oncologist's office. Dr. Taylor looked at the bone scan and decided that Ross may continue to walk and drive - with caution. He has sent us to Dr. McInnis - the radiology oncologist. Ross has disease in both arms and legs, as well as on his ribs that needs treatment.

I had been worried that radiation would lower his already critical blood counts; but Dr. Taylor explained that there is not a lot of bone marrow in these areas (compared to the spine and pelvis); so his counts should not come down too much.

He did say that after radiation, there may be a need for some orthopedic surgery. They may need to place pins as support into the affected areas.

And so, we breathe a little easier for now.

Thanks for all of your notes of encouragement. We are surrounded with love and support and consider ourselves very blessed.

I'll report again as soon as I have news.

Linda


Report created by: Linda
Date: 07/31/2007 at 10:51 a.m.

Yesterday, Ross received the first in a series of daily radiation treatments. He was still feeling the effects of the chemotherapy administered two weeks ago; so enduring additional side effects is rather difficult.

Last week, they scanned and made all the calibrations for treating his right arm, left leg and right, back ribs. By the time Monday came, he was experiencing a lot of pain in his right leg. He mentioned this to the radiologist; so they scanned and are treating that area as well. The schedule has routinely been everyday for two weeks - with weekends off; but I'm not sure how many treatments this round will constitute.

He hasn't been able to walk very well, this morning. With the help of his cane, he did manage to come down from the bedroom, a little while ago and he is on the couch, now. He's determined to go to the office for a little while before he goes to his radiation treatment.

This morning, we talked about his childhood. In particular, the first or second grade when he and Tom were in the same room. The teacher had stepped out for a minute and Tom and Ross got into a little argument. It ended with them stabbing each other with their pencils. Ross got Tom on the top of his head and Tom stabbed Ross in the upper left side of his chest.

The teacher came in and they both acted like nothing was wrong. Some girl tattled on them, though, saying "Tom and Ross were fighting." When the teacher saw blood on Tom's head, they were in trouble. Ross didn't think much of that girl. He says he and Tom never would have told on each other. (True friends.)

He still has a black mark on his chest. He says it's moved over the years; but it's there - a tiny souvenir of the good old days.

I must go and check on him. Thanks, as always, for your notes and calls, thoughts and prayers and offers of support. We appreciate our family and friends so much. Keep in touch.

Love,
Linda



Report created by: Linda
Date: 08/10/2007 at 08:22 a.m.

Last week's radiation treatments were brutal. The decision was made - without my knowledge - to give Ross twice the dose at each visit in order to shorten the course. He went for 5 days, instead of 10 or 12. It was very hard.

Ross defended the doctor's decision, saying that the last few days of the longer course of treatment, were always terribly difficult. He was happy to get it over with in a shorter time.

I'm not so sure.

I watched him get significantly weaker each day - not knowing that he was undergoing a stronger than usual dose of radiation, each day. By Thursday, he could barely walk and Friday, he fell. Scary, scary stuff. His bones are all so brittle and damaged that a fall could have been disastrous. Thank God, he only cut his eyelid.

He missed Friday's radiation treatment as a result.

He remained in bed for two days and Sunday, managed to get up and walk a little.

Monday, we went in to the oncologist's office for blood work and I.V. fluids. Then, he underwent his final dose of radiation.

Wednesday, his blood work was abysmal. In just two days, it had changed dramatically. Dr. Taylor wants him to rest and come back next Wednesday. No more treatments for now.

I am doing all the driving, now. I think it's significant that Ross won't drive - his decision. He asks me to take him to the office, everyday. He works for a couple of hours and then comes home to bed.

The grim reality is that the chemo isn't working. The cancer is growing. We haven't yet been given any kind of prognosis - Ross hasn't asked for one.

I'll report again, next week. Or, sooner, if there is some change.

Meanwhile, know that we are in love and happy together and very grateful for all of our blessings - our family and friends, first among them.


Report created by: Linda
Date: 08/18/2007 at 09:47 a.m.

Just a quick update to let you know how we are doing:

Ross has grown quite weak. Last weekend, he was having difficulty even sitting up; so I called Dr. Taylor who advised me to bring him in to the office for blood work, first thing, Monday morning.

Ross was not able to get out of bed and walk until the afternoon. The blood tests revealed that his counts were very low. We spent the afternoon and evening in the hospital where he received two units of blood and a unit of platelets.

The transfusions seemed to help, a bit, though he is still quite weak and just barely walking with his cane. He spends most of his time in bed. When he can manage, he still asks me to take him to the office for an hour or two in the afternoon.

Don't tell anyone - but we snuggled in that hospital bed for a little while. :) Next to my Wossi, with my head on his shoulder, there is nothing wrong in the world.

We have an appointment with Dr. Taylor on Wednesday afternoon. I'll write again, when there is something new to report.


Report created by: Linda
Date: 08/26/2007 at 11:10 a.m.
Subject: Happy Anniversary

(On Satuday, August 25th, Ross and I celebrated 34 years of marriage.)

I'm sitting on the bed beside Ross. We have been through quite a slice of hell since I last wrote.

The first transfusions didn't seem to help, much. Ross was still so weak and fatigued. We were also having trouble managing his pain and had to increase his medication.

We saw Dr. Taylor on Wednesday and we spent Thursday in the hospital. Ross's counts were very low. He needed more transfusions - two units of blood and some platelets, again. Dr. Taylor had also said that Ross could potentially break a leg by merely walking. I found that somewhat unnerving, to say the least.

Friday, i was starting to feel a little desperate. I felt like we were just waiting for a crisis to occur and the stress was really getting to me. I called the doctor's office and talked with a nurse. She was wonderful and understanding. That conversation was very encouraging. She told me about services that were available to help us cope, here at home. She also promised to have Dr. Taylor call me when he returned to the office, Wednesday. We decided that it was probably time to call in the troops. (i.e. Hospice Home Health Care) Knowing that help was on the way, I was able to relax just a little.

Saturday morning at about 6:30, I heard a "snap" and Ross cried out in pain. He had made a jerky movement in his sleep and broke his right arm just above the elbow.

I called the physician on call and Charlie, who came right down. We stabilized his arm with a sling made from an old long sleeve t-shirt. I wrapped the broken arm to his body with the ace bandage that Charlie brought to us. Charlie walked down the stairs, backwards, holding onto the railing. I held onto Charlie's right hand, Ross wrapped his left arm around my shoulders and we maneuvered down the stairs as one unit.

We have a really nice hospital near our house; but I chose to drive to Charlotte as our doctors practice there. The doctor on call had promised to let the hospital know that we were coming. They took Ross right away and set his arm. We were back home less that 4 hours after the break occurred - including the half hour drive each way.

We are trying to relax for the weekend. Monday, we will talk to Ross's doctors about the necessary next steps. That may, or may not iclude surgery to stabalize the bone.

The nurses often ask Ross for his pain number: "On a scale from zero to ten, zero being no pain and ten being the worst pain you've ever felt, how is your pain today?" Ross has always considered the bone marrow aspirations as his "ten". After having his arm splinted, he told me, "I have a new ten." When the nurse finished that brutally painful procedure, I saw him touch her arm and say "Thank you." What a gentleman.

A few minutes ago, both of our wonderful sons, our two beautiful daughters-in-law and the three grandsons were all here, talking and laughing with "Grandpa". We are surrounded with love and support and we appreciate it more than ever.

Be good to each other. I'll write again, soon.


Report created by: Linda
Date: 08/29/2007 at 9:56 p.m.
Subject: pending surgery

We are in the Presbyterian Hospital in Charlotte. Tomorrow, Ross is to have his left femur and right humerus surgically reinforced with pins. He should come through this precedure just fine. The doctor says he should be able to use his leg immediately.

The doctor feels that we will probably be able to go home in about a week. He's ordering hospice care before Ross goes home to set things up for us and to follow up with Ross's care once we're home.

Paul and Kelley came down from the mountains and Charlie, Kathleen and the boys came to visit Grandpa this evening. The boys had to put on surgical masks before they could enter Ross's room because Ross is neutropenic (compromised immune system). They pretended they were doctors. Threee cute little giggly surgeons. Henry even wore a pair of safety goggles for a special added effect.

I have my laptop (a birthday & anniversary gift from Ross). Unfortunately, it doesn't contain my email address book; so if I don't hear from you, I can't write to you. At least, not until we go home.

Thanks for the good thoughts and prayers. I'll let you know how the surgery goes.


Report created by: linda
Date: 08/31/2007 at 09:15 a.m.
Subject: post surgery

Ross is sleeping, now after what can only be described as the worst experience of our 38 years together.

Someone dropped the ball, post-surgically, and this resulted in more than six hours of excrutiating torment. The surgeon wanted him to stay in the orthopedic hospital for a few days. Unfortunately, there wasn't room. That resulted in a wait, during which, Ross's nurse was mean-spirited and ill-informed. For some reason, she held back the pain medication. Her uninsightful, pig-headed logic sent his pain level through the roof. By the time they called me back into the recovery room, I could see that he was in terrible agony.

She was short, cold and argumentative in the face of very simple, suggestions or comments. After I had "words" with her, like most reptiles in human form, she slithered around me attempting to imitate someone who cared.

Ross had to be transported to the cancer wing of the Presby - the movement and time became another layer of torture.

Back on 3A, there are several staff members with the hearts and souls of angels who hustled and hurried and hurt for Ross. They had not had any forewarning and had to wait for his information to be entered into the system and for the pharmacy to send the meds.

It wasn't until 1:30 this morning (since surgery ended around 7:30 p.m.) that he began to feel some relief and was able to rest.

Incredibly, Ross's sense of humor and fine, intelligent character consistently shone through and it seemed especially cruel to me that such a kind, good man had to endure this kind of pain.

This weekend, Dr. Taylor has promised enough pain medicine and I am guarding the door against visitors to ensure rest. I trust everyone will understand.

Your thoughts and prayers are always appreciated.


Report created by: Linda
Date: 09/04/2007 at 1:01 p.m.
Subject: setting the record straight

Most of the reactions to my last posting have been concerned with the recovery room nurse. Most have expressed some variation of her head on a platter. I probably put too much emphasis on her role and I want to clear up what seems to be a narrow focus.

The horror show only started with her. Had she had the appropriate orders, (and perhaps some human DNA) then she would now be just an unfortunate, unpleasant memory.

Truth is, neither the surgeon nor the anthethesiologist ordered sufficient pain medicine, the subsequent series of red tape further prevented the nurses from administering what he needed. There were several hours post-surgery, when no pain medication was given at all.

Several departments and personnel dropped the ball.

Every administrator imaginable has been in to hear our story. They take notes, offer some insight and even apologize. Both hospitals are aware of what happened.

The only two that have not accepted any responsibility are central to the event and probably most culpable. They are the surgeon (Ross calls him "Dr. Slash and Burn") and the anesthesiologist.

Ross is suffering from acute stress disorder and is having some difficulty congnitively and emotionally - although we have seen real progress since the episode.

One baby step at a time.

No one loves anyone more than I love Ross. We're working on this together.

Thanks for the prayers. Keep 'em comin'.


Report created by: Linda
Date: 09/07/2007 at 8:34 p.m.


 
Ross is sleeping and I will also be, soon, I hope. I barely have a minute throughout the day to call or write. I thought I'd take a few this evening to let you all know how we're doing.

Hard to say, really. Ross's blood work indicates that his bone marrow isn't functioning well. The hope is that it will pick up the pace, soon. In the meantime, he's received many transfusions - including platelets. The doctors hope to build up his counts and have them stabalize soon so that he can go home.

We are also working on pain management. We'd like to get him off of the intravenous delivery. The current idea is to give him a patch and supplement that with a pill. That will be much better for when we're home.

The other concern is the emotional and psychological effects of the pain and trama he endured.
He can't keep up with a conversation for very long. He often zones out in the middle of an activity. If he even thinks about calling friends and family, he often gets upset.

We're working on it and I think we're making progress. He needs peace and quiet and little to no challenge. I tell him that everyone understands and that he doesn't have to worry. He just needs to rest, relax and get better.

That is basically, the remedy for acute stress disorder (post tramatic stress sydrome is the same thing - the name just changes a month after the damage is done). I'm hoping that love and time will strengthen his body and his mind.

Paul and Charlie are getting the house ready for Ross's return home. They're moving the cable box and t.v. up into the bedroom. Hospice will deliver a hospital bed and other helpful equipment.

Kathleen and Kelley look after me. They buy me treats and bring me clean pajamas and clothes. My sweet friend Anne has been a constant source of unselfish love and generous support.

Dr. Taylor is talking about sending us home, sometime next week. That will be a positive change, I'm sure.

In the meantime, we trust that those that love him will wait patiently. Just as soon as he is able and wants to receive visitors, I'll let you know.


Report created by: Linda
Date: 09/12/2007 at 10:04 a.m.
Subject: some positive change

(My new laptop has a built-in camera. I finally figured out how to use it. If you haven't yet seen it, check out the photo that Larry Hoffman inserted into the last report. Larry is the kind gentleman that created this Web site. He helps those of us who are technology-challenged. I can't thank him enough for this site and for his help.)

Several changes to report - I will try to be brief.

We have a new pain management plan, which at first blush, seems to be working. Our new consultant has suggested that the intravenous delivery might, in fact, be the most effective and that it wouldn't be impossible to go home with it. He did change the medication and as a result, Ross slept peacefully, all night. This morning when he woke up, he wanted hot chocolate and a muffin - before breakfast! I took that as a very good sign.

His platelet and white blood cell counts have come up a little. I am assuming that that is an indication of bone marrow activity. Another good sign.

However, his red blood cells have dropped. He's receiving more transfusions, today, to remedy that.

So, for the most part, we are conquering the obstacles that prevent us from going home. If the trend continues, that's where we'll soon be.

Keep the faith, keep you fingers crossed and keep in touch. Thanks so much.


Report created by: Linda
Date: 09/13/2007 at 11:54 a.m.
Subject: Numbers Game

Twenty-four hours is a long time when you're watching blood counts. Our going home hinges on the numbers stabalizing for at least a day or two.

His red blood cell count looked good, this morning - because of yesterday's transfusions. Unfortunately, the white blood cell and platelet counts have taken a downturn, again.

Dr. Taylor wants us to stay in the hospital over the weekend and on Monday, he'll re-examine the situation. There's no sense in going home if Ross will need a transfusion a day or so later. I've learned that Hospice cannot do transfusions; so it would mean moving Ross again.

We are trying to manage his pain and make him comfortable. That's our number one priority. Then, we'll look at the numbers before we'll consider going home.

We've been in the hospital for 17 days and in this room for two weeks. He's been out of the room only twice - the day before yesterday and again, this morning. The physical therapist helped to get him out of bed and into a wheelchair and I took him for a spin. He gets praise and cheers from nurses as we pass. Once I got him back to the room, this morning, the nurse and I cleaned him, shaved him and gave him a hair cut. He looks so much better.

All that activity has exhausted him and he is taking a nap.

When he's awake, he is thoughtful and quiet. We talk when he wants to. He needs to have things explained to him and sometimes, re-explained. He is having some minor cognitive processing difficulties. He is still Ross and true to form, he comes up with the funniest comments. He surprises me all the time.

Friends have asked me how he is coping. He remains solid as a rock. He is brave and uncomplaining and makes me proud to be his wife.

He tells me that he loves me and I have no doubt in the world that it's true. I'm a very lucky woman.

Thanks for caring. I'll be in touch.


Report created by: Linda
Date: 09/18/2007 at 06:22 a.m.
Subject: Home Stretch

This morning, Dr.Taylor suggested that we can probably go home Thursday or Friday, if that's what we want. We want.

It isn't exactly an ideal situation. Ross's blood counts are still dropping. He may need more transfusions and have to be readmitted into the hospital at some point - maybe just as an outpatient or for a period of time. We don't know.

I've learned that there rarely is an ideal situation. Attempting to address all questions and solve all future problems, is wasted energy. Even when you think you have the answers, the situation can change, anyway.

So, for now, we are looking forward to our bedroom, our books, our grandchildren, our dog, my cooking, sunset through the walnut trees in our backyard and home. It's ever so humble; but there's no place like it.

I'll let you know when the decision is final.


Report created by: Linda
Date: 09/19/2007 at 10:22 a.m.
Subject: Set Back

Ross woke me up early this morning, complaining of being chilled. I covered hm with some warmed blankets; but noticed that he actually felt warm. I called the nurse who took his temp and he was, indeed, running a fever.

Since then, they've drawn blood for a culture and have given him Tylenol and started him on antibiotics. He still has a fever.

I will sit here, by his side and let you all know when there is some change.
Thanks, as always, for caring.


Report created by: Linda
Date: 09/19/2007 at 6:30 p.m.
Subject: regroup

This afternoon, Ross's fever broke. He soaked the sheets and his hospital gown. I changed them three times!

He had been pretty well nonresponsive all day. Once his temperature returned to normal, he opened his eyes and said, "What happened to me?"

He is sleepy and weak; and his blood work shows that he has good reason. All of his counts are down - red and white as well as platelets.

Dr. Taylor came by and explained that sometimes, a fever will "burn up" the counts. So, tonight, Ross will receive a couple of units of blood and a unit of platelets. We'll watch and see how he does, tomorrow, and MAYBE we'll go home on Friday.

I'll write again if and when something changes.


Report created by: Linda
Date: 09/20/2007 at 5:49 p.m.
Subject: Homeward Bound

Tomorrow morning, Ross will be discharged to hospice care - at home.

He will be transported by ambulance from the hospital, around noon hour.

I spoke with the nurse practitioner and our dear Dr. Taylor and they both told me that a realistic prognosis is days, maybe weeks; but probably not months.

Hospice and I will do our damnedest to keep him comfortable.

Please visit, if you are so inclined - call first. Ross may or may not be able to see you - depending on how he's feeling from day to day and hour to hour. I'll give you an honest assessment. You can count on that.

I have to go, now and get ready for the move. I'll write again, from home.


Report created by: Linda
Date: 09/26/2007 at 8:21 p.m.
Subject: Home

We have been home since Friday afternoon. The trip was hard on Ross. He hurt with every bump and sway.

Nevertheless, we were both glad to finally be here.

The grandsons came to visit. Henry did a silly dance and made us all laugh. Campbell made puppets and drew pictures and gave them to Grandpa.

Ernie told a story that went on and on and was punctuated with "And guess what?"

Ross just lay in his bed and smiled.

Hospice put a hospital bed beside ours in our bedroom. I put the rail down on one side; so I can hold his hand or snuggle up at night. He woke up the first couple of nights and talked to me.

He said, "We finally made it home." I said, "Yes"

He said,"Quite a journey for two Sudbury kids."

He has changed profoundly in just a few days. He is conscious less and less and now, only briefly. He speaks slowly, one or two word answers, and in a whisper.

I told him that he can go whenever he's ready. He said, "Yes."

I told him that he has done a good job and that now, he can just rest.

True to form, he said, "Don't worry."

The love of my life is slipping away. My heart is breaking.

I will never, never be the same.


Report created by: Linda
Date: 09/29/2007 at 10:52 a.m.
Subject: Good-bye

Ross passed away this morning at 10:20, with his family by his side.



Report created by: Linda
Date: 10/08/2007 at 5:07 p.m.
Subject: Last Report

I want to print all of these reports and save them in a notebook. Once I do that, I will close the account. What a good thing, this Web site has been for us!

I wanted to tell everyone about the remarkable experience I had at Ross's passing. I am always a little reluctant to share this because it sounds strange - even to me.

It is what I experienced, however, and I would be less than respectful to not at least acknowledge that it happened.

I wrote about it in a letter to an old friend. It seems to describe the situation well enough so I will just copy and paste the letter here:

Dear Pete,

Thank you for taking the time to write those sweet words.

I have been a very fortunate woman, to have loved so deeply, for so long, such a wonderful, good man.

Not only that, I was privileged to care for him and to be with him as he passed away.

Somehow I knew that it was time and I called the family to his side. In just a few minutes, he took his last breath. I was immediately overcome by a powerful feeling. It's hard to describe; but I'll try: It was like love and happiness and glorious beauty and it filled me up and surrounded me for several minutes.

The memory of that feeling has held me up this week and I have been spared that terrible spiral into despair that I'd feared. Once again, I feel especially blessed.

I am glad that you found our story worthwhile. Thanks again for
caring.

Be good to each other.

Sincerely,
Linda Dow



Report created by: Linda
Date: 10/23/2007 at 06:51 a.m.
Subject: a poem

I'm reading the poems that Ross read
Before he passed away.
The ones that he'd escape to
At the end of a long, hard day.

I'd often put my book down
To watch him while he read.
He'd put his arm around me
As we snuggled up in bed.

Sometimes he'd read out loud a bit.
I'd savor every part.
I'm glad we made those memories
Held close now, in my heart.


Report created by: Linda
Date: 11/01/2007 at 07:11 a.m.
Subject: Dow family

Ross's mother, Iva, passed away yesterday evening - just 32 days after Ross. She had been living in a nursing home in Maple - near King City, where Ross's sister and her family lived.

She fell two days ago and broke a couple of ribs. She immediately developed pneumonia. When Muriel arrived, Iva told her that she didn't want to live. The doctors were surprised at how quickly she slipped away.

Yesterday would have been her and her husband Paul's 65th wedding anniversary. That was a devoted couple. Still is.

Muriel has lost her dad, her father-in-law, her brother and now her mother all in less than 22 months. God love her.


Report created by: Linda
Date: 08/30/2008 at 1:18 p.m.
Subject: Update

Several times over the last few months, I have been asked for copies of our story. There is a lot of information here. Some of it might be difficult to read - especially for those in the thick of the battle. It is all, nevertheless, true and as accurate as possible.

I've decided to republish my reports, hoping that reading about our experience will be helpful to someone who has been diagnosed with Multiple Myeloma, or to their caregiver.


Report created by: Linda
Date: 04/08/2009 at 12:48 a.m.
Subject: Update

Just thought I'd add an updated message. I am in the process of moving back to the lake where I spent most of my childhood and where Ross and I rented a cottage for several years. I found the perfect little cabin, there and bought it.
It's a dream come true for me. I've hoped to live there as long as I can remember.
I will check back, occasionally, to see if there are any messages. Let me know if I can help in the way of council or just to lend a sympathetic ear.
Sincerely, Linda



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