C-day plus 1

We're happy to report that 24 hours after her first chemotherapy treatment Carolyn is feeling very good. She has had no hint of nausea. However, the anti nausea drugs have made her feel a little dizzy and had her running to the bathroom a couple of times. She was able to help me volunteering at the library this morning. Afterward, she needed a long nap. Her color, energy, and disposition are all excellent.

Helping to keep her spirits up was the receipt of a package of classy hats and headgear from Headcovers Unlimited. She can't wait to see the ones from Jessica.

Chemo

Chemo (pronounced kee-mow) is short for chemotherapy and, as the name implies, it is a therapeutic infusion of a select mixture of chemicals. This is how Carolyn's first day of chemo went down.

We got up at "0-dark thirty", a phrase I hadn't heard since my army/national guard days. But this was how the charge nurse for chemotherapy described it. In this case it is shorthand for some unholy hour before the sun gets up. After a shower, we got dressed and had a couple of soft-boiled eggs with toast. The drive to the Kaiser Morse Avenue doctors' offices and hospital was uneventful. Carolyn was supposed to check in with the Oncology secretary at 8:15 but the sign on the door said the office opens at 8:30. No problem, we figured we'd just check in with the Infusion Center.

The Infusion Center was locked but we could see someone inside. Carolyn knocked on the door. Cindy came to the door and let us in inviting Carolyn to take either seat 1 or 2.

All of the stations were equipped with a comfortable chair and, as near as we could see, the same medical equipment. This is a picture of infusion station 2 which was to be Carolyn's home for the next 6.5 hours.

Within minutes the nurse Cindy had Carolyn's arm punctured and taped ready for the medications to be given IV (intravenously).

First she was given two medications including prednisone to make sure the IV line was working and to help her tolerate the stronger solutions she would be given to attack her cancer cells. These are the stronger chemical solutions - Rituxin, Cytoxan, Vincristine, and Doxorubicin. I think I recognize at least two of those from what my mother received in chemotherapy 40 years ago. I was interested to note that each was given separately in serial fashion into Carolyn's arm.


One of the more caustic chemicals is actually manually injected into the vein. This is so the nurse can periodically reverse the flow to make sure the IV is still properly placed in a blood vein. If the needle had moved and the chemical allowed to flow into the muscle or skin area it would cause severe damage. But in the blood where it is meant to be, the damage hopefully means dead cancer cells.

Although Carolyn brought along a couple of books to read, the anti-nausea medication made her so sleepy that she slept through most of the treatment.


The last of the four chemicals she received was also given with special care. Because it causes an allergic reaction in some people, they start out the IV drip very slowly (80 ml/hr) and increasing the rate by 40 ml/hr each 30 minutes to a maximum of 320 ml/hr. This little machine monitored the rate of the infusion to insure that goal was met. That left the nurse available to check vital signs or any signs of allergic reaction.



An automated blood pressure monitor allowed the nurse to check Carolyn's blood pressure without seriously inconvenience to either one of them.

The Infusion Center is even so patient friendly that they have crackers and drinks available for the patients to snack on during their treatment.

She's now home resting. The nurses indicated that as long as she continues to take her anti-nausea medication, fatigue and sleepiness will probably be the only affects she will feel from this round of therapy. We'll see.

Finishing touches

Until now, I have been mostly watching my bookbinding mentor Pat do the rough repair portion of books - replacing and covering the "boards" or covers, reattaching the covers, reattaching end papers, and even repairing end papers and other major problems. But this session was all about final finish work that adds so much "flair" to the finished product.

For the first time since I've been working with him, Pat pulled out his type trays. Specifically he wanted to use the 8 pt type this time around.


Pat was just finishing recovering a book with some beautiful goat skin leather. The owner wanted the title to be stamped on the spine in gold.

While the brass tools were heating up on the specially built tool heater, Pat began setting the type in a small hand held type holder.


This is where experiences printers have to remember to set the type upside down and backwards. The width of the typeholder allows Pat to set three or four small lines separated by spaces.

The book is held upright by one of the wooden presses and a small ribbon of plastic with actual gold on one side is placed over the spine. The correct section of the type holder (which has been sitting on the heat table) is then rolled onto the gold ribbon. This transfers gold to the newly pressed spine leaving an indentation as well as a gold lined indentation.

Pat then showed me how he used rolling patterns to produce patterns that were unique and beautiful. Certain aspects of bookbinding seem much more like art than manual labor.

Carolyn hits the ceiling

When your wife asks you a simple question like, "What should we do about our bedroom ceiling?" there is no use in saying, "Nothing. I like it the way it is." By her asking the first question she is already serving notice that something WILL be done. Just accept the fact and help her where you can so your bedroom will be back to normal as soon as possible.

Our bedroom ceiling has a 2-inch decorative drop trim that, until recently, was painted and textured the same as the rest of the ceiling. I sort of liked it that way.

Carolyn, on the other hand, felt it needed to be colored to enhance the effect. She preferred a green to match the curtains while I suggested gold to match the ceiling fixture. To her credit Carolyn did try both colors as seen here. I was disappointed in the gold and Carolyn saw the green was far too dark.

Carolyn got some green paint in a shade about 3 times lighted with the result you see here. (You can click on the picture for a blown up version.) With the lighter shade of green we have a color that highlights the decorative trim but doesn't overwhelm the room.

Passport processing

You know, we all hear so many complaints about the many ways that the government is dysfunctional, I think when it works well, we should shout it loud and often. Today, I want to praise the U. S. State Department for the way they handled our passport renewals.

About 2 1/2 weeks ago Carolyn and I sent in our applications for new passports. I remarked at the time that although we had paper application forms, the State Department had created an online form that could be completed online then printed out. They probably could have made it so that it could be submitted online but we had to send in our old passports and our pictures anyway. At the time they were estimating that it would take 3 weeks to get our new passports.

Yesterday, we received our new passports 5 days earlier than the 3 weeks promised! At this speed it would make no sense to order expedited processing.

The only "rough spot" we encountered was the tracking system. Like UPS or FedEx, the State Department supposedly has a system where you can check online where in the process your passport application is. We could never get a response that our applications were in the system at all let alone where in the system they were. Because we had sent a check, we knew when the check was cashed that we were somewhere in the system. This problem, of course, was minor for us because the applications were processed so fast.

So a great big tip of the hat and 3 cheers for the U. S. State Department's handling of passport renewals.

One of these thing is not like the others

We enjoyed a thoughtful orientation meeting this morning at Kaiser. There were only two patients - Carolyn and anther woman who will start chemotherapy next week. The instructor was Sheerey, the advice nurse who sort of heads up the platoon of nurses who watch over the two infusion centers at the hospital. Sheerey had done her homework and had both women's notebook personallized with the chemicals they will be receiving, the potential side effects of each. She also went over the schedule, the process for signing in, and what is expected from the support person (driver).

This other woman in the class had recently visited a wig shop near the Sunrise Mall and had bought herself two wigs. Sheerey explained that both women would lose their hair 20 days following the first infusion. In order to be prepared for that event, Carolyn and I visited a wig shop up hear the Sunrise Mall. We not only visited but found 4 wigs that we really liked. Our budget isn't that big, though, so we walked away with only two of the wigs.

Here are the pictures of Carolyn with her new wigs. One picture is her natural hair and the other two are the fake ones. Let's see who can guess which picture is of Carolyn's real hair.

A.



B.



C.

Presidential Cookies - Clinton's chips

A couple of weeks ago, our neighbor rang our doorbell and presented us with a plate of cookies. "They're the kind the President gets!" he exclaimed and went on to describe how he had ajusted the baking time slightly to get just the right consistency. A little incredulous, I asked what he meant by "the President" and he chuckled as he assured me it was a recipe he got from the Internet. It was, in fact, the Today show website with the headline:

Presidential spouses’ favorite cookie recipes

All three of the featured recipes looked so good that I decided to try Hilary Clinton's recipe rather than Laura Bush's since I assumed my neighbor had done a proper job of following the recipe.

I can report that the cookes taste great although they could use more chocolate chips (what recipe can't?). The recipe is small - only 3 dozen cookies) but it is easy to double. I doubled and actually ended up with 7 dozen, all the better to munch down.

A word from Carolyn...

Today, I'm turning the blog over to Carolyn:

Hi There,

I just got off the phone with the Kaiser Chemo department. It looks like I will be having my first infusion on Monday. I had a bone marrow biopsy yesterday morning (I have a sore hip but it wasn't traumatic) and I had a PET scan this morning at 7 a.m. I have a chemo class on Thursday morning and the treatments begin at 8:15 a.m. on Monday, September 29th. Infusions typically take the majority of the day. They will be putting in four different meds and then I also have pills to take. Apparently, one of the meds usually causes an allergic reaction so they put it in slower but still give it to the patient. They give one cycle of meds every three weeks. Supposedly I will feel best on the day of the treatment and then feel worse as time goes on. I will have a large loss of hair at about two weeks and have a new infusion at three weeks. This goes on for at least four cycles. If there is evidence of spread (indicated by the bone marrow biopsy or by the PET scan) that will extend out to 6-9 cycles. I will also have some radiation in the stomach area but I've had that before and it isn't a big deal.

I’m relieved to finally get the schedule and know what is in store. Some things just need to be moved on through. The anticipation is worse than the reality (well, maybe not, I do remember the labor involved in popping out an new baby). I feel really good right now and I feel like I’ve made good progress on my list of chores. However, there are still enough things on the list to keep me entertained for several more weeks.

I hope all is well with each of you.

Love to you,

Carolyn

Carolyn's chemotherapy scheduled

There's nothing like having the actual date and time on the calendar to make something REAL. And real it is! Carolyn is to begin chemotherapy next Monday morning at 8:30. She had a bone marrow biopsy this morning and is going in tomorrow for a full body PET scan. Thursday, we will both be attending the chemotherapy orientation class to have all our questions answered and to see that we are not alone in this adventure.

But the real adventure starts next Monday morning. Carolyn was told to have someone available to bring her to the hospital as well as take her home. She will be spending the better part of a working day there but they didn't say whether she would be able to read, watch TV, or just lay back and let the therapy happen. I guess that is one of the things we'll learn on Thursday.

As always, we appreciate your thoughts and prayers.

Let the games begin...

I'm convinced that the secret to enjoying ward activities, and probably activities of any kind, is to get into the spirit of the event. The first time I heard of a ward game night, I almost got sick to my stomach. I'm not a big game person in any case so the idea of playing games with 50 or 60 other people just didn't resonate with me. Come to think of it, I probably ditched that activity.

Last year, I decided I wouldn't be able to ditch the games but I might be able to appoint myself wandering greeter and use up all the time that way. That wasn't half so bad as I had feared.

This year I actually decided I would try a couple of games and pretend to be totally incompetent. That isn't hard for me to do since I'm at least halfway incompetent. Pretending to be totally takes only a bit more energy.

In any case, a good time was had by most of the people in the room and, to be honest, I think I might have had a good time, too. Of course with Carolyn as chair of the activities committee and me being a member of the committee, there was a good likelihood that I'd be there.

Some people got right into the game playing with chess


or a good game of Set,

Cranium, Turbo Style was a big hit at one table.


While at another Dominoes was the game of the evening.


And here it was a rousing game of Apples to Apples. There seemed to be a game for just about everyone's taste.


There was even a table set up for the young 'uns that featured generic play dough and puzzles.




We had a good crew on cleanup duty although at least one of them was pretty young.

Jumping (or knocking down) the hurdles

Friday morning Carolyn had her heart scan. It took about an hour. It was very thorough.

Monday morning she is scheduled for a bone marrow extraction which we've been told is not a pleasant experience.

Tuesday morning she is scheduled for a full-body PET scan.

Still to be scheduled is a class on chemotherapy, basically to answer all the questions that everyone who needs it have.

Carolyn feels they are trying to get her started on chemo before the end of the month.

Stay tuned.

Easy Steps - wasn't that easy

Earlier I have mentioned here that I am sort of apprenticing bookbinding and the first example my mentor showed me was a LDS hymnal that was pretty beat up. The next project was one that I had a major hand in completing. The book is Easy Steps for Little Children by Mrs. Annie R. White, copyright 1903. It consists of paraphrased stories of the bible. As a child I loved to hear the stories and later read them myself. The pictures were also vivid. I was a little surprised to find the book on our bookshelves. But wasn't surprised at its condition since it got a lot of use. But with a little bit of cloth, paper, and glue, it doesn't look half as bad as it used to.

Here are the results for you to see (before and after):

Front Cover












Spine











Inside Front Cover











Title Page










Page 11












It wasn't easy but it was fun.

Sam Ditmer picks the Y

Sam Ditmer picks the Y
(full story here)

My eldest son Edward sent me the press release about Sam Ditmer who would be no different from the other 5,000 freshmen admitted to BYU this fall except that Sam is the national high school math champion this year and received admission letters from MIT and Stanford as well as from BYU. Edward asked, "Did Sam make a good choice?"

This brings up the question of what a "good choice" is. BYU has a good undergraduate program in math. From the press release it sounds to me like Sam is already looking elsewhere for his graduate education so yes, it probably was a good choice. Of course, we don't know what kind of scholarship BYU gave Sam or what portion of his total expenses would be covered by scholarships for any of the three universities where he was accepted. Our second son Lee was also accepted into MIT but the financial costs were simply too high for Lee or our family to bear. Sam might have the same problem.

Get a Grip

Some of you, referring to the poem that was on the anniversary card I gave to Carolyn and which I subsequently quoted in this blog, have remarked how romantic the two of us must be. Well, judge for yourself as this is the "romantic" present I got for Carolyn - two "Get a Grip"s.

When I saw these in the store I laughed at first because these are nothing but the old handles we used to use when computer rooms required raised flooring for the air flow. In order to lift up a floor tile (which were usually 2 feet square), one pressed a device onto the tile and activated the suction cups at either end of the device. That "sucked" the floor tile up so that it could be lifted out of the floor grid.

Someone was thinking out of the box in marketing these little handles. We don't need them for floors anymore (at least most of us don't) but we could use an extra handle in the tub or the shower. Not that we can't get by without them but we feel just a little safer with an extra handle in the right place.



We're not sure exactly where they're going to end up but that is the beauty of having a portable handle that we can use in the tub...

or the shower. We could even take them on vacation with us for those strange bathrooms we might encounter.

Tri-focals or try focals?

The clarity and acuity of your eyesight normally doesn't change all at once. Instead you experience a gradual loss of clarity or increase in visual noise. Then you see an eye doctor who tests your eyes and gives you a prescription for contact lenses or eyeglasses. You put them in/on and suddenly the world changes.

Because of this gradual change, I can't really tell you when my mid-range began to be a problem. I found myself nodding more and more, not saying "yes", but "Help. I'm trying to find the proper place on my glasses so I can see the music or the screen more clearly." With my next to latest pair of glasses, the mid-range section is ironically the smallest while I probably spend the most time trying to interpret what I see in this section.

Please look at the picture above. Like my world with my previous glasses, the center of the action has a great deal of detail but I only get to see the detail of the the rest of the picture by moving my head up and/or down. This annoyance really comes up when I'm at the computer or at the piano - the problem being the same for both. Over the past 3 or 4 years, I found myself interpolating or guessing at the parts I couldn't clearly see. That, of course, requires extra time and bpu's (brain processing units) so I react slower or maybe even not at all. I was thus handicapping myself when typing at the computer or playing the piano.

Finally I wised up and talked myself into buying a pair of glasses that has only the middle lens correction. I can't believe how much easier it is for me to read music or the computer screen. I don't h ave to constantly nod my head up and down trying to find the "sweet spot" when the screen becomes legible.

I love my new glasses.

Stomach Tumor - Phase 2

We finally got to meet with the Oncologist this afternoon to learn what is now in store for Carolyn. Carolyn had been reading all she could about cancer and cancer treatments and was pretty well prepared for what Dr. Duong had to say. Still, it was an emotional shock to hear that she needs to have chemotherapy.

They will be doing a number of tests and scans over the next couple of weeks to determine as well as they can the extent that the cancer may have invaded her body. These tests include blood tests and bone marrow extraction. The scans include a full body CAT scan as well as a heart scan. The lymphoma will be categorized as Stage 1, 2, 3, or 4. Even at stage 1 which is minimal spread of the cancer, there will be chemotherapy. At stage 4 there is just more of the chemo and possible addition of radiation therapy if there is a suitable target.

The minimal chemotherapy treatment is a series of 4 treatments given at intervals of 3 weeks. The treatment consists of 4 drugs given intravenously and 1 pill. Depending on the tolerance of the patient to the chemicals, the treatment can take a couple of hours or the better part of a working day. Side effects can be loss of appetite, irregular heart beats, tingling of fingers and toes, and loss of hair. The day she receives the chemicals will be the day she feels the best. Halfway between the treatments is the day she'll feel the worst.

The doctor would like to start the chemotherapy as soon as possible as does Carolyn. The sooner she starts, the sooner she'll be over them. She could start as early as October 1.

As usual, we will keep you updated on this blog. Thanks for all your prayers and good wishes.

Musclebound

Musclebound, now that is a phrase that I never expected to be applied to me. But this morning, as part of my ongoing treatments to mitigate or slow down the symptoms of Parkinson's disease, I met with a physical therapist who specializes in Parkinson's. She had me do various resistance type exercises at the end of which she declared that I had good muscle tone everywhere but that i might be a little musclebound in certain areas. Apparently you CAN have too much muscle if it becomes inflexible or overdeveloped. In any case, my PT Jeanine wants me to concentrate more on stretches and to actually cut down the weight training.

On a side note, both Carolyn and I have noticed that I walk much better at the Kaiser offices than I do at home or office. We're thinking that it might be easier for all concerned if I stay home and just mail in the co-payment.

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