Good morning! Just wanted to let you know that we have changed to a different website. For whatever reason, some people were having difficutly accessing this site and we were not receiving any of the messages you left. The information regarding the new website is as follows:

1. www.caringbridge.org/visit/billfromhold

or,

2. www.caringbridge.org , then enter the name "billfromhold" on the home page

Hope this isn't an inconvenience. We've heard from other cancer patients that this site works well.

Looking forward to hearing from you.

Bill and Marcia

As each day passes we get more information about Bill's cancer. Today the Mayo Clinic diagnosis was confirmed. The cancer is a very nasty and aggressive clone of cells.

Bill had a rough go of it last evening as the course of steroids he has been on ended. The original symptoms, most notably very swollen and painful lymph nodes, have returned. We saw the oncologist in Olympia today and in consultation with the Seattle Cancer Care Alliance (SCCA) doc we saw yesterday they agreed to put him back on steroids for a few days so he would remain reasonably healthy going into the chemotherapy. We'll be doing appointments with docs each day early next week. Then we will go back up to SCCA for one more consult on Wednesday, see the oncologist in Olympia early on Thursday morning, and then Bill will be admitted to the hospital (St. Peter in Olympia) on Thursday for a two to three week period during which he will receive the chemotherapy and begin to recover from it. In the meantime they will begin working on identifying a donor for the stem cell transplant that will occur sometime (we're not sure yet how long) after the chemo. A number of people have asked and we are not yet certain about the process for identifying donors but know that there is a national registry. We will learn more about that on Wednesday

We remain positive and know you will send good thoughts Bill's way.

Well, today was the day. We received some good news and some not so good news.

The good news: Marcia will not need to have chemo. Taking medication for the next five years will provide results very close to those yielded from a course of chemo. Obviously, taking the medication is our choice. There are a few side effects but it sounds like there is nothing we can't deal with.

The not so good news: Dr. Linenberger, at the Seattle Cancer Care Alliance, saw Bill today. He affirmed the preliminary diagnosis from the Mayo Clinic; dendritic cell malignancy. This is a very rare cancer with just a few cases to refer to for guidance. Dr. Linenberger and his colleagues have not seen a case previously. He did an additional bone marrow biopsy in each hip today. The purpose was to reaffirm the diagnosis and to gain more tissue to further refine the diagnosis for the purpose of identifying the appropriate drug(s) for chemotherapy. We will see him again on Monday or Tuesday to get those results.

In any case, the first step in treatment is likely to be immediate and aggressive chemotherapy. The treatment would require Bill to be in the hospital for 2-3 weeks; 1 week with the chemo. and several more to recover sufficiently to come home. The goal is to minimize the number of cancer cells but it is unlikely to be a cure. This would also allow time for a stem cell donor to be identified with a stem cell transplant being the best shot at a "cure".

Obviously, this wasn't what we'd hoped for but we are strong, have each other, have loving and supportive families and we'll deal with whatever comes. The other thing we know that will help us to meet this challenge is you, our caring friends whose support means everything to us.

It's been a few days since we've blogged. We continue to wait for April 1 to see what the future holds for us. In the meantime we are sticking pretty close to home to avoid infection, eating well, walking each day, getting back to work and continuing to enjoy time with each other.

Bill had several Dr. appointments last week (dermatologist, pulmonologist). The pulmonologist released him with the understanding that the pulmonary edema he suffered was likely related to the extremely low blood platelet count (a symptom of the cancer.) The dermatologist felt that Bill's symptoms were/are related to the cancer but will do another biopsy this week. He will go in for his weekly blood test tomorrow so we'll know later in the week what his blood counts look like.

We've had several wonderful meals during this past week. (We've been told that at least one person reads this blog just to salivate over the menus!) Last Thursday we had stuffed peppers, a Morrocan stew and homemade foccacia bread. Tonight we had the most wonderful chicken enchiladas we've ever had along with a Mexican flavored coleslaw. (Somebody told Linda, our caterer, that Bill loved coleslaw - thanks for doing that!)

Saturday we had the best day. Marcia's two nephews, Ben and Stan Ross came to visit. Ben runs the family printing business in Spokane and Stan is the dinner chef at the Metropolitan Grill in Seattle. The boys (OK, they're successful young men) were so thoughtful to take their weekend time to spend with us. Stan just returned from a trip to Egypt and brought us the most thoughtful gift - framed pictures of the symbols for love and strength. Couldn't have been more perfect for the challenges we face!

This coming weekend we are looking forward to the arrival of Bill's daughter, Kristie Williams, from Boise. We're looking forward to seeing her!

We're hanging in there!

Well, these are the "dog" days - waiting for a diagnosis. We are both doing pretty well at the waiting but we do have our moments.

This does provide time for some of those things that don't seem to get done otherwise. We (both of us) spent over 2 hours on the phone this morning with Comcast just trying to cancel our account at the lake. Do you know where your pin number, all email addresses, account numbers, answer to the secret question (do you even know your secret question?) and passwords are? Hopefully you are better organized than we are!

The good news is that Bill's platelet count was up on the last blood test - not quite normal but much better than it was. The bad news is that his white count is very low making the danger of infection very high. So - now that we've invested in Mrs. Dash, we can also invest in antibacterial soap for every room and lots of hand sanitizer.

We had our first catered dinner last night and it was excellent - a mediterranean chicken dish with figs, wild rice casserole, roasted asparagus and a wonderful salad with mangos. How lucky are we to have such good friends? We can hardly wait for Thursday and our next gourmet adventure. Linda, the caterer, also listened very carefully to Bill and delivered a plate of his favorite oatmeal/raisin cookies. This is all really helpful as Bill has a good appetite but continues to lose weight. Not so good for Marcia who eats the food and does not lose weight.

We are off to the doctor this afternoon - our new way of life! We are fortunate in that our whole series of docs seem to have taken a real personal interest in us and our predicament. They email and call within moments of any important information. Health care is a problem in this country but we surely have only kudos for those involved in our care.

Saturday was a busy day for us. When we first moved into our new house we had some updates done by a truly talented contractor, Steve Ackelson. Steve's attention to detail and thoughtful planning has made each change just perfect for us and the house. This week he delivered the cabinets that complete our dining room. They are a thing of beauty and we are so pleased with how they turned out. Steve's wife (and Marcia's longtime friend), Danise, came over on Saturday and unpacked the remaining boxes to fill these cabinets with many of our favorite things. Some of these things have been packed away for nearly 2 years so it was fun to see them and talk about their stories again.

We had visitors too. Ken and Mary Kanikeberg came over to have lunch and spend some time. We also had a visit from our friends Steve and Georgia Conway from Tacoma. Bill served in the legislature with Steve. He and Georgia were here in Olympia for a special exhibit at the museum on women's suffrage. Steve has an extensive collection of posters, banners, postcards and jewelry that he loaned to the museum for this exhibit.

Today is a bit quieter as we do our regular reporting to clients. Generally we are both feeling better but wish we had a little more get up and go. We are trying to plan for things we can do between now and April 1 so we'll feel productive and the waiting won't feel so long. We want to lengthen our walks each day and take on a few doable tasks around the house in addition to our work with clients.

Here's hoping for a really short special session!

Just a quick post this evening. Tonight we had the last of a series of wonderful dinners that our friend, Danise, prepared for us this week. Every one was delicious and couldn't have been more appreciated.

The Cancer Care Alliance called today and scheduled Bill for April 1 - the same day as Marcia's appointment to find out about chemo. Well, at least we'll get it all done in one day! We continue to think good thoughts and know that you are doing the same for us.

Today Bill had his first office visit with the oncologist, Dr. Sui. Dr. Sui reviewed all of Bill's records and also talked with Dr. Kady (pathologist) who had talked with the folks at the Mayo Clinic. Inititially Dr. Sui thought perhaps all of Bill's symptoms might be the result of a massive viril infection which can sometimes cause evidence of T-cells to be present. However, after Dr. Sui talked with the other docs he concluded that probably wasn't the case. The results from the Mayo folks are somewhat unclear. They have given a preliminary result of lymphocytic leukemia but are not definitive about the diagnosis at all. They suggest more tests and analysis.

The next step is a referral to the Seattle Cancer Care Alliance/Fred Hutchinson Cancer Center. That referral was made today and we expect an appointment with them in the next couple of weeks. So, once again, patience is the order of the day/week/month.

Bill and Marcia both feel like they are getting stronger. Bill's platelet and white counts continue to improve. In fact, that's part of the problem with a diagnosis. He's not supposed to be getting better and yet seems to show signs of improvement.

Yesterday, Marcia celebrated the big "60" with many cards, flowers, calls, emails and Facebook posts. How can either of us thank you enough for remembering us? We also received a wonderful gift from many of you today - a caterer to fix meals for us! How thoughtful of you. She's coming tomorrow to talk about food choices so we can stay within Bill's dietary requirements. We'll enjoy every morsel and think of you as we do. What a thoughtful idea!

We'll keep you posted as we learn more.

Today was a good day. The doctor tested Bill at rest and while he was up walking around and agreed that he could give up the oxygen - no more tanks or tethers! His blood saturation was above 96% under all conditions. A week ago we didn't know if he would ever be able to do without it and today it's gone. He's worked hard to build up his stamina and today he got his reward. We couldn't be happier.

Today was a good day for Marcia also. They finally (after 19 days) took out the drains and she doesn't have to sleep sitting up. More important for everyone is that she can take a shower! Ace bandages are in the picture until at least April 1. As our good friend said, "You'd look great in a kimono - maybe next they'll bind your feet." Thank heavens for people who make us laugh!

Bill sees the oncologist for the first time (post-hospital) on Thursday. We don't expect much news this quickly, though. Marcia will see the oncologist on April 1 and should get the news about whether she will need chemo.

We're exhausted but happy!

What a gorgeous day! This is the first really sunny, warm day that we've spent in our new home. The sun shines in and our little patch of the woods is beautiful. Marcia went out for a short walk this morning and this afternoon Bill took his portable oxygen tank for a walk to the mailbox. He actually sat at his desk for a while this afternoon, too. While we both are still napping and pretty worn out it feels like our new "normal" is a little more like our old "normal"! (This is true if taking morning, afternoon and evening naps is normal!) Marcia will be most happy when the ace bandage wraps come off so that she can breathe again, sleep without sititing up and take a real shower.

One thing this is teaching us (and you know this is not a strength for either of us) is patience. The recuperation is not occuring at the speed of light which we would normally demand. It takes it's own sweet time. And, we still have several weeks before we get a final diagnosis/treatment plan for each of us so we will get plenty of "patience" practice. We are also appreciating the little things - the ability to get the bed made, keep up with the laundry, and keep the house picked up and begin again to keep up (via phone and email) with our work. It's difficult for us not to have the level of "focus" that we usually do.

One of the things that all of this has reinforced is the importance of our relationship with each other and with our family, friends and colleagues. Time is precious and we value more each day our good fortune to have all of you on our side in persevering through tough times. Our simple thanks can only begin to say how grateful we are to all of you. Thank you.

Hello, all. Today was a long day filled with Dr.'s appointments for both Bill and Marcia. Thank goodness for our good friends Ann and Mike. Mike stayed with Bill this morning while Ann went to the doc in Tacoma with Marcia. This afternoon they took us out to Group Health for our appointments. This oxygen management thing is an art and it really helped to have all hands on board. And, the moral support means everything.

Marcia got all of her stitches out - drains will come out early next week. The news from her oncologist wasn't bad but not quite what we expected. The tumor was about double the size they originally thought. Unfortunately, that makes it just large enough to require some additional testing. While they got the entire tumor and there was no cancer in the lymph nodes they will do some additional testing (22 genes) that will result in a score. If the score is high then they will likely recommend chemotherapy. If it is low there is no need to do anything else. We likely won't know the results for about a month. So, we really believe that all is well but will need to do some additional patient waiting.

Bill was very tired today and had limited stamina. The doc says this is probably because of the steroids he is taking. Fortunately we don't have any appointments for the next couple of days so we'll stay home, nap and generally work on getting well!

Good morning. Bill had a good night's sleep last night, ate a protein-filled breakfast and is now fast asleep on the couch! He is getting better each day but continues to need the oxygen. His big disappointment of yesterday was that Diet Coke (as many of you know, it's his standard beverage) just doesn't seem to settle well. His big triumph was being able to take a shower while not tethered to the oxygen. Last evening he actually meandered around the house and out onto the front porch for awhile - to the extent that his oxygen tether would permit it. We both took several long naps yesterday. We think our bodies are just trying to catch up after what we've put them through in the past two weeks.

Sam and Kristin came and put away groceries for us last evening as we are changing our eating habits with the "low salt/high protein" edict. Kristin brought along several low-salt cookbooks that have lots of ideas - expecially for seasoning mixes, etc.

Today will be a slow one as we both continue to recuperate. Tomorrow, Mike Ryherd will stay with Bill as Marcia has appointments with both the surgeon and oncologist. We are thinking positive thoughts about the final pathology report!

We really appreciate your comments on the blog and look forward to hearing from you.

Good morning. And it is a good morning - Bill is sitting in his big chair reading the newspaper - at home! They finished all of the testing they can do for now so last evening they sent him home to sleep in his own bed. He is still on oxygen - a bit less when resting and a bit more as he is up and moving around - which is slow but more frequent. He's still taking steroids to help his lungs clear. But, no more monitors, IVs and people waking him up at all hours to poke and prod. Despite it all, Bill was an amazingly "patient" patient so now he's set a standard for good behavior that he'll need to live up to with Nurse Ratchet here at home.

We talked with the oncologist/hemotologist yesterday. He ordered some additional tests. The folks in Olympia and up in Seattle are a bit stumped. They can narrow down the abnormalities in his bone marrow to a "family" of disorders but haven't yet been able to do a positive ID as to the specific culprit. So, yesterday they sent all of his records to the researcher at the Mayo Clinic who has done the most research/writing about this family of bugs. Of course this means we will have to wait a bit longer but once they have a positive ID they will know how to treat it. They are reasonably certain that this is not a fast growing bug but rather something "indolent". (Who would ever have thought that Bill would have anything "indolent" attached to him?) Without knowing what the bug is they are still not certain what its relationship is to the pulmonary edema episode that was so difficult last week.

Bill is on a high protein, low salt diet so if you have any good recipes/menu ideas please send them our way. Maybe we'll buy stock in Mrs. Dash! Also, neither of us are getting out to do early spring yardwork and so we are looking for a good company to come in and treat the moss in the lawn, cut back the grasses, etc. Since we are new to our house and Olympia garden maintenance folks we'd really appreciate any suggestions of reliable companies you may have worked with.

We received a couple of emails yesterday about not knowing how to post a comment on this page. Just go to the bottom of the page and click on the item that says, " (a number) comments". That will take you to a page where you can post anything you'd like to say. We'd look forward to hearing from you now that we can look outward to what's going on in the rest of the world!

Hello and many thanks for all the good wishes coming our way. We thought having a blog might be a good way to keep people posted on Bill and his recuperation. As many of you know, Bill has been in the Critical Care Unit at St. Peter Hospital since a week ago Sunday morning. He was moved to a regular room yesterday but is still not taking phone calls, visitors or flowers. He is feeling and breathing better each day. He is still on oxygen but seems to gradually require less of it.

We are continuing to work with the good docs (it seems like hundreds of the them - internist, surgeon, family practice, oncologist, pulmonologist, pathologist, hemotologist - way too many "ists" to keep track of in Olympia and elsewhere) in tracking down the cause of Bill's medical issues. We don't have answers yet and probably won't until the end of the week. It's frustrating not to know but Bill needs to be in good condition for some of the tests so that's our focus for right now - getting him healthy, on his feet and breathing easily.

Marcia is recuperating well and should get the final pathology workup from her surgery this week. We expect it will show the same as the initial finding that there is no cancer in the lymph nodes.

We are so grateful for your thoughts, prayers and offers of help. Right now we are in pretty good shape but will keep your generous offers in mind in the coming weeks when neither of us will be able to lift much or have alot of excess energy. Again, thanks to all.

M and B