REMISSION!!!

Jim is in total remission. The doctor says that he can't fix him anymore. His bloodwork is amazing. He feels great, he has energy, he is feisty. We appreciate each and every person that helped us during this long process. God bless you all.

Jim's Journey - Day 49 post transplant April 18

Met with the new cancer doctor at St. Mary's today. Dr. James Cunningham. He seems very nice and knowledgeable. Jim's numbers continue to rise. Jim asks about mowing the lawn and Dr. Cunningham gives us a more detailed explanation of why Jim cannot do yard work. Jim seems more satisified and reserved to the idea. (Yeah)

His legs are felling much better today and he is more active than ever (a good idea?) He likes to be busy, busy, busy - getting his old self back. His customers and friends are glad to see him back.

Deb

Jim's Journey - Day 48 post transplant April 17

Guy, Jim's newest hire stops by this morning to give Jim a full deep tissue message. Jim says it feels both good and extremely painful at the same time. Guy is amazed at the amount of stress on Jim's muscles. Instead of the original 1/2 appointment, Guy actually worked on Jim's legs for an hour plus. He cautions Jim to stay off his feet for several hours today so the work he did gets a chance to relax and revitalize the muscles. Jim naps off and on until about 3:30pm. He states that his legs feel amazing. Off to work on the lawn mower with Norm.

About 7:00 Jim hobbles in, extremely worn out. He has been working on the lawn mower since 4:00, without a break, and has overdone it a little. Norm stays for dinner and we have a good conversation. Jim is very relaxed and animated. It is nice to see he is feeling very good.

Deb

Jim's Journey - Day 42 post transplant April 11

We have a follow-up with Dr. Bronstein today. Jim's weight is good, his numbers are good. He feels good, except for his legs, which are very painful. He has decided to not use the pain medications that have been prescribed to him. He will continue on the Neurontin for the next week or so, then determine if it is worth continuing.

Dr. Bronstein questions Jim's return to work. He gets agitated when I "nag" him about washing his hands, using sunscreen, wearing gloves, etc. but he is very forgetful right now.

We go out to dinner at La Ramada across the street. It is very awkward. Jim requests his food cooked very well, fresh made guacamole, questions how long the salsa has been made (doesn't eat any). We tell the waitress about his illness and hope everything is hot enough when it gets to the table.

After dinner, we decide it is not worth the risk of going out again. We don't want to subject Jim to any unnecessary food problems.

Deb

Jim's Journey - Day 39 post transplant April 8

What a wonderful feeling waking up in our own bed. Jim slept very well and so did I. It is amazing how comfortable our own bed feels after sleeping in a motel for 6 weeks.

Jim is working already! He promises to be careful, but I am apprehensive. He just can't say no.

Casey's birthday today and we have been invited to Gloria's for shortcake. I don't think we should go, but Jim really wants to.

Jim just can't keep away from others. He shakes everyone's hand, and gives a few hugs. This is what I am afraid of, his inability to follow the plan. The shortcake is very good. Strawberries and Blackberries over homemade shortcakes. Casey is 16 this year.

Deb

Jim's Journey - Day 38 post transplant April 7

Jim is up with the rain! 6:00 am and he is ready to leave. Not me, I am sore and aching and tired. Have breakfast to fix, dishes to wash, and a few things to pack.

On the road at 10:15am. Jim and I are in separate vehicles and will drive at our own pace. We will keep in contact with the cell phone. Jim is very excited to be going home!

Uneventful trip, good to be home!

Deb

Jim's Journey - Day 37 post transplant April 6

Labs, clinics, line pull today and we get to go home! Jim is stoked. He is so ready to leave the rain and overcast skies of Seattle for warmer, brighter days in Walla Walla. He feels great!

The doctor says Jim's numbers look good. He will need to continue to have follow-ups for the next year. He will have weekly follow-ups for the next month, then they should taper off to once a month. They will re-stage his myeloma at 60 days to determine how well he responded to his treatment. There is no cure for myeloma, but Jim should be able to maintain for many years.

We start packing. It is hard to believe the amount of paper, piles of it, we have received from the SCCA; bloodwork, instructions, pamphlets, books on myeloma, books on cancer in general, what to eat, what not to eat, etc. We also had to purchase pots, pans, dishes and silverware. I can't believe we have amassed so much stuff in the last 6 weeks! Thank goodness we have two vehicles to move it all in.

Jim says goodbye to the night manager, Jay. He has been a big help to us while we have been here. Always has a smile, is very jovial, and quick to lend a hand when needed. Jay says he will miss our dog.

Exhausted, time for bed.

Jim's Journey - Day 35 post transplant April 4

Happy birthday to Stephanie!!

Jim has a dental appointment this morning. All is well, they are very happy with this teeth. He is proud that they are pleased. He has been trying hard to get those teeth brushed and flossed every morning. They give him a prescription for flouride.

Follow up at the clinic today also. No bloodwork this morning. We discuss the pain in Jim's legs. Neuropathy - not much they can do for it except try to make him comfortable. They are not sure if the nerve damage is permanent, but they do advise it will last for several weeks to several months. They prescribe Gabapentin (Neurontin) 300mg in the evenings. After 3 days the dose will increase to 300mg morning and evening. We also ask for several refills on his meds so we have them on hand at home. His Potassium remains low so he will need to continue supplementation. We want nausea meds "just in case", as his nausea comes and goes.

Jim's Journey - Day 34 post transplant April 3

Happy birthday to Kevin!!

Laundry day. We need to catch-up. Doing laundry once every two weeks (when I run out of clothing) is getting old! It takes 2 hours. We put in the laundry and go over to IHOP for breakfast. Jim is NOT impressed. We ask for eggs cooked hard, they come out runny. The hashbrowns are greasy and the texture is re-fried. My omelet is good, but I get indigestion again. We dry the laundry and return to the motel.

We drive up to St. Vincent de Paul Thrift Store. I am looking for small bowls and/or cups to make a bead spinner. The one I found at Goodwill is too big. I find two small bowls and a ring stand that I can adapt. Less than $3.00 compared to buying one for $24.99!!

We eat a good dinner of toast and spaghetti with tomato sauce. Jim climbs into bed; he is fatigued, but not really ready to sleep. We watch a couple hours of NCIS on the computer. Jim is having difficulty falling asleep tonight and opts for his Ativan.

Deb

Jim's Journey - Day 32 post transplant April 1

Jim was so hoping to be going home today. Alas, not to be. He is definately being discharged on Wednesday, April 6th. They will be removing his Hickman line at 3:30pm and we are planning to leave first thing Thursday morning! Jim is looking forward to being in his own environment.

Jim's blood counts are looking very good. He will remain in contact isolation until he is discharged next week. He is not feeling well today, it is believed it is because of the new medication.

We have nothing planned for today. Jim spends most of the day in bed.

Deb

Jim's Journey - Day 31 post transplant March 31

Well we found out this morning that Jim has developed a bacterial infection in his stomach. It is called Clostridium difficle, and is not killed by hand sanitizers. Jim must wash, wash, wash his hands. He is on a 72 special contact precaution. This means he has to be extrememly careful at the clinic. Has to limit contact with everyone and has to notify staff if he uses the restrooms so they can be sanitized. He has to take antibiotics for the next 10 days. One good thing is this will NOT delay his release to go home. Yeah! We picked up Jim's antibiotics and spoke with the nurse about my compromised immune system to make sure I don't need to take antibiotics also. She stated that I should be ok.

We went to the Space Needle today. I'm glad SCCA gives out passes, because we could not afford the fees they charge just to go upstairs! We spent quite a bit of time walking around the platform. It is a beautiful view and would be splendid if it wasn't raining. I can imagine the view with a beautiful sunlit sky! Lake Union and the sound were awesome! I bought a coffee cup for my souvenir collection.

Jim's Journey - Day 30 post transplant March 30

Jim is not feeling well this morning. Not really nauseated, but queasy. He asks for Compazine instead of Zofran. He states that his stools have become less formed, a little looser. This is a concern to us, as this is how he started feeling before he was admitted to the hospital. He has dry heaves.

I contact the hospital and leave a message. Jim speaks to the Triage nurse, who seems a little stand-offish. He just wants to make sure he doesn't wait too long before asking for help. They tell us to come in for a "stool kit" and to have his bp taken.

Jim's bp is a little low, but goes up when he stands. This is unusual as it normally goes down. We talk with the nurse about what he has/has not eaten. She wants us to make sure to medicate a couple hours before he eats. Nothing sounds good to him.

We take a couple classes today. The first is about Chemo and Cognitive Memory loss aka Chemobrain. A good class that explains some of the problems with chemotherapy and memory and how to overcome them. It offers an insight to some of the problems Jim has been dealing with. The second class is on Long Term Follow-up and what to expect once we leave the SCCA. Jim will be followed by Dr. Bronstien of Providence St. Mary's Regional Cancer Center in Walla Walla and Dr. Aaron Vawter of the St. Mary's Physicians Group.

Jim has to be very careful for the next 6 months. No hand-shaking, no hugs, no spectator events. No horseback riding (no hay), no gardening, including lawn-mowing. He can go back to work, but should have limited contact with his customers. Of course, we still need to talk with his doctors to get his specific cans and cannots. He must get vaccinations for all the childhood diseases, but it will be a year before he can do this. If we want to do any traveling we are advised to contact the Center for Disease Control to find out what, if any, problems/diseases are current to the area we want to go. With Jim's pledge to do something each weekend, we will have the CDC number memorized.

We return to the motel and take a short nap, watch a show on television, then go get groceries for dinner.

Deb

Jim's Journey - Day 29 post transplant March 29

We received a call first thing this morning. Jera, Jim's scheduler, wanted to know if we could make it in at 9:45 this morning instead of 2:00pm this afternoon. No problem. We actually like morning appointments so we can go out and do something if Jim is up to it.

We ask for our new schedule when we arrive. Jim's hopes of going home this weekend are dashed. We have appointments the rest of the week, and thru next Wednesday April 6th.

We meet with the Physician's Assistant, Tamarind. Jim's numbers are still very good, but he has been feeling a little queasy the past few mornings. They suggest we stop the Zofran and start taking one of the other nausea meds, or Maalox.

While talking with the Nutritionist, Jim brings up the feeling and we start to discuss his diagnosis of Meniere's Disease. A problem with fluid in his inner ear. The nutritionist suggests a low sodium diet so that he does not retain fluids.

Deb

Jim's Journey - Day 27 post transplant March 27

Jim is up before me, fixing himself toast.

Our plan for today is to drive to Auburn to see Stacy (Jim's stepdaughter) and her family, and to pick up the van. Jim is hopeful we are going home next weekend and wants to get started packing some of the items we are not using.

It rains off and on today.

We go out to pizza with the kids. Jim feels safe eating pizza since it comes directly out of a hot oven. We have been cautioned about eating out since there is no control over the preparation of the foods. We have no knowledge of how the foods are cooked, how the foods are stored, whether the staff and kitchen are clean. The nurse told us that we need to ask for our foods to be cooked fresh, not steamtable items. The salad bar at the pizza place looked scary, and we didn't patronize it!

We drive back to the motel. Jim takes a very short nap, then we watch a show or two on television.

Deb

Jim's Journey - Day 26 post transplant March 26

We go to St Vincent de Paul this morning. Everything is 50% off today. We look around, but really don't find much we cannot live without. We return to the motel.

Jim doesn't feel like doing anything today so he sleeps most of the day. He just isn't feeling up-to-par. We think it is all the residual effects of his busy week. Maybe he will feel up to something tomorrow.

Deb

Jim's Journey - Day 25 post transplant March 25

Blood draw and clinic starting at 9:00. Jim is tired today, we believe he may have overdone just a little the past few days.

Jim's numbers are over 1.5!!! Unfortunatley, he was exposed to a little too much sun yesterday and he has a terrible rash all over his face. Itchy and red! The doctor recommends a moisturizing cream and Sunscreen everyday he goes outside.

We stop by the Thrift Store on the way home, but Jim isn't up to staying very long. We take a two hour nap, and decide not to do much today. Jim is worn out and very tired and sleeps most of the day.

Debora

Jim's Journey - Day 24 post transplant March 24

Jim was able to sleep fairly well last night without taking his Ativan. He is having a hard time waking up, tired eyes he says. We have a blood draw only at 8:45, we aren't ready to leave much before that time.

Back to the motel, big breakfast, and a little snuggle time with Phaedra and Jim is ready to go again. He is a little stiff today due to walking so much yesterday.

We make it to the Museum of Flight, but realize that I left the tickets in my "other" coat. We drive back to the motel, the round trip takes us an hour. Pouring down rain. It is interesting to go through the Concorde and Air Force One. We also toured the WWI and WWII exhibits and leaver after 5:00pm. The sun is out by the time we leave. Jim had a wonderful day.

Jim is complaining about his legs hurting. Bone pain he says. We eat a large dinner about 6:30pm; Jim eats again about 8:00. We watch "Oceans 11" until 10:00pm. It has been a long day, but a good day.

Deb

Jim's Journey - Day 23 post transplant March 23

Today is ours!! No blood draws, no clinic. Jim's sleeps until 7:30am.

Jim has been talking about the the Museum of Flight. We are fortunate, the SCCA provides free passes to their patients. We call and are able reserve the pass for today; we pick it up around noon. The Museum is huge, covering many acres, many buildings.

I cannot believe that we spent over 3 hours at the Museum. Jim took hundreds of pictures. Jim is beginning to feel like he may have overdone it "just a little", but he had a great time. He wants to continue, but his muscles are sore from walking around and up and down the stairs. We only got through the main gallery and the Red Barn. We hope to go back tomorrow. Jim wants to see the Concorde and old Airforce One plane.

Good dinner, a couple shows on television and to bed by 10:00pm. Jim is tired in a good way tonight. He had a great day.

Debora

A Good Time to Help

This is Jim's sister writing. We are all praising God for the great progress Jim is making. Although Deb hasn't mentioned it on the blog, they have been doing their best to minimize expenses, even to staying in a hotel that most of us would not be willing to stay in.

They appreciate very much the donations that have come in, but as you can see, we are still far from our goal. At this time, they have exhausted their resources, but must somehow pay for their expenses for the rest of the time they are in Seattle.

If you have been considering making a gift to them, this would be the ideal time to do it. The easiest way is to use the widget on this blog; other options are in the top post.

One more thing: Please keep up your prayers. Although Jim is doing well, he is not "out of the woods" yet. He continues to need the touch of the divine healer.

Thanks so much!

Jim's Journey - Day 22 post transplant March 22

At today's clinic we find out that Jim's neutrophils for yesterday were 1.15 (1,150,000)!!! Today's numbers are .85 (850,000), still good. His vision is beginning to blur - the doctor tells him this is normal, it will get better, but may not return to his normal vision. The doctor tells us they no longer need to see us on a daily basis - yeah!!!! One step closer to being able to go home. We are aiming for April 1-3! Our next visit will be for blood only on Thursday, then Clinic on Friday. No weekend appointments for the first time since Mar 1. We brainstorm ideas for the weekend.

He is feeling very good today, the weather is very nice - bright sun, little wind.

Another low tide today. We choose to go to Alki Beach. We have been told it is very much like the Southern California beaches. Jim really enjoys it. He walks a very long time along the beach. I am surprised at how far he keeps going. He must have walked at least 2 miles today. The beach reminds him of the beaches of San Francisco, with the colder waters.

We stop at another beach further down, more rocks, more tidepools. There are many purple sea stars (starfish) on the edge of the tide. It is hard to tell whether they are alive or dead. I find one small orange one with many legs and film it moving. It is a wondrous sight as I have been to the Oregon coast hundreds of times and have never seen a starfish move. We drive along the beach road for several miles. It is a wonder to me that there is this much beach this close to Seattle.

We had 4 loads of laundry to do today. Took about 1-1/2 hours.

Jim's appetite is back and he eats a large dinner. We talk a little about his excitement and want to be done with Seattle. He wants to be home, looking after his business, and with his friends. He talks to the staff at the office to let them know the good news. He asks them to think about ways to arrange the office so he can be isolated from the customers more, yet still be available. He will need to be careful for at least a year.

It was a wonderful day! Plenty of sun and a good exercise walk.

Deb