Still going strong

Hi All--
today is another good day---taking the opportunity to go to LA for the Renoir exhibit it will be nice to look at beautiful paintings---and then out for dinner with some friends. I opted for a deli--will eat Pastrami while I still feel like it.
We will see what next Monday brings--- doing what I can to stay focused--and not dwell on what might be. Thanks for all of the sharings---it is so nice to know there are so many in my camp. Will write again soon.
Love the comments and e-mails
Pat

Day 5 Pat's 2 cents - she takes the keyboard

Hi All—

Firstly, thank you all for your love, support, prayers, happy vibes and good thoughts. I can’t tell you how good it is to know that I have so many great people in my camp. I can’t imagine having to handle this alone. Of course, my number one advocate and caregiver—Sid--- has been a jewel.---When this is all over I wonder if I will go back to complaining—probably. It is amazing how quickly we forget.

Sid has done a great job of keeping everyone informed—probably some info that you could do without—for this I am thankful-- he is thorough. However, I thought that it was time that I put my own two cents in—as now I have the energy.

If all of the treatments are as easy as the first one, it will be a breeze--- I am not counting on it and am taking it one day at a time.

I had Lauren here for the first treatment and a few days after. I was glad that I was not sick so that I could enjoy her company. We did have some fun time. Did go see the “wig and hat lady.” What a riot—I looked AWFUL in a wig--- she said that I wasn’t motivated yet—imagine me as a redhead—she is ordering me a short haired wig in gray that she really thinks I will like—once it is cut and styled—we will see. Supposedly, five percent of chemo patients do not lose their hair---I am not cutting one hair until I have to. Maybe I will be in the 5%. But then again, I don’t win the lottery. I will cross that bridge when I come to it. Did buy a turban—summer colors—and I do have hats. Lauren insisted I needed a brighter lipstick and blush—so why not—dropped some bucks at Lancome. Richard stopped in and got our new laptop running in about 5 minutes—all the Palmia experts were stumped-- not to mention the support from HP—or better to say non- support.

I am going about my business—doing the usual—as well as some fun things. Will see friends, go to the movies, usher at SCR, go to San Diego for Art Alive, and of course, go out for lunch and dinner. So far my appetite is fine. Maybe too good. I have gained a couple of pounds—everyone tells me that’s good. And I do cook dinner—on occasion.

Once again, thank you, thank you, love you all.

Do call if you feel like it—no talk about sickness—just fun things. E-mails are always welcome. I will make it through with all of you behind me. Will continue to put my two cents in when I can. I am assured that I will have good days at the end of the cycle.

Day 3

Pat woke up at her usual time, her rest made decent by adavan. A bit of a stomachache dissipated as the morning wore on. Honoring the admonition to avoid "crowds", Pat opted for a walk with me instead of going to the gym. Because of scattered showers, we walked within Palmia rather than risk getting caught by a heavier shower on our "great circuit." Carrying a small umbrella proved very effective as we experienced only scattered drops, and that for only a very short time. When I went off to my sculpture class, Pat and Lauren took off for a visit to the “wig lady” and shopping after lunching out. The “wig lady” does more than wigs. There are a number of other head coverings that she handles for “chemotherapized“ folks. I got back from class before the girls got back from their foray. They returned with a bag from Chico’s and all sorts of literature from the “wig Lady” who, incidentally, works out of Saddleback Memorial. Lauren is preparing turkey burgers for us. After dinner she’ll take off to meet with an old friend. Perhaps the best testimonial as to how Pat is doing is that Lauren frequently expresses guilt about abandoning her family to go shopping and dine out. But make no mistake she has been wonderfully helpful and her presence makes this a happier place.

Day Two, Tuesday

Pat felt fine with no symptoms. That is quite usual. By the end of the day she noticed an increase in weight which surprised her because of the repeated cautions about keeping her weight up. We went out to dinner with Lauren and had a lovely time.

Day One

The first day was remarkably uneventful, aside from getting up at 6 AM and returning home a few minutes ago. Pat tolerated the onslaught of medications, palliative and curative, quite well. She did tire in the afternoon for a bit, but walked to the car and is raring to go. Now it is prednisone for 5 days and anti-nausea medication as needed. The "as needed" was qualified by the instruction that it be taken at the first hint of nausea. Once vomiting begins, the medication is not nearly as effective. Pat insists that she never gets nauseous and is certain she will never use those pills. Lauren and I were around most of the time, taking off singly for a bit some time during the day. By the way they served a lunch of soup and a sandwich and offered some to Lauren and me as well. Lauren demurred. However, Pat and I agreed that the soup was quite good. Even so, we are not recommending that you make reservations for dinner.

Unless there is some change in the way Pat feels, I will not post daily.

No real news, but…

Yesterday was, technically, the beginning of therapy - we reported to UCI for Pat to have her blood drawn for baseline testing. We begin in earnest on Monday. While nothing in the outlook has changed since my last post, we have been in touch with the 2 doctors and they have, at out request, chatted. Our subsequent conversation with Dr. Lilly’s nurse gave us a much better insight into the situation. It was pretty much as we had suspected. The evaluation of the bone biopsy showed 7 of 24 cells with chromosomal abnormalities “consistent with a diagnosis of lymphoma.” For Dr. Krishnan, that information did not push her to recommend the less aggressive cycle of every 2 weeks. Dr. Lilly, on the other hand, felt that the presence of the disturbed cells was enough to warrant the more aggressive periodicity of 2 weeks. Apparently they agreed to disagree and were comfortable leaving the decision up to Pat. We have a couple of weeks to settle on the specific course of action. Pat’s reaction to treatment will play a part in the decision. If the white blood count goes too low, the decision is made for us. The same would be true if Pat finds the treatment excessively debilitating. In either case, Pat begins the therapy at 8 AM Monday.

We continue to be “whelmed”, not overwhelmed, by the tremendous outpouring of goodwill and offers of help. Some have been sensitive and inquired as to our feelings about Pat’s being put on their prayer lists. While that doesn’t conform to our belief system, the personal support that the action represents is, in itself, comforting and appreciated.

Pat is tending to her gardening chores and will soon be on her way to have her nails done. Tonight we are off to dinner and the Segerstom Hall for a concert. Tomorrow we will do our usual Sunday walk around the lake, Pat staying for breakfast, and me taking off for Long Beach to pick up Lauren. Tomorrow afternoon we’ll take Lauren to the theater with us, while we do our last ushering gig for a while. Well that brings us pretty much up to date. I’ll probably be posting more regularly now that Pat has begun her chemotherapy. We can’t thank you enough for the all of the love and support that we feel.

We have just gotten back from UCI and our consultation with Dr. Lilly. He went over the bone marrow report thoroughly. It turns out that there is evidence of the marrow having been invaded although there were no lymphoma cells per se. That makes it Stage IV, if only an early Stage IV. So the treatment cycle becomes 2 weeks rather than 3 weeks. The treatment is called R-CHOP with the initials standing for the 5 drugs that are used. We start treatment On April 19th. Blood is drawn the day before and an injection to raise the white blood cell count is administered the day after treatment. After 4 cycles of treatment the basic tests, including bone marrow biopsy are redone to determine the efficacy of the treatment. If she is clear then, Pat will get 2 more cycles and then be finished except for periodic bone marrow biopsies to check for relapses. As we proceed I‘ll report progress and additional steps as they are manifested.

This was a bit of a blow. On our consult with Dr. Krishnan at City of Hope on Tuesday she did not mention the fact that the report on the bone marrow said that cells were found “that were consistent with lymphoma. This upset Pat quite a bit and we are working off our steam.

After our consultation we had lunch overlooking the beach in Laguna, stopped for gelato, and did some shopping on our way home.

At this point we are trying to get on with our lives and are concerned that the love that all of you have for Pat could prove burdensome. She is torn with saying please don’t call and having to go through the story repeatedly. This blog is the way out. I will post any news here as soon as possible. If you want to talk to Pat about ANYTHING EXCEPT LYMPHOMA, she would be delighted to talk to you. Among the most desirable subjects are: food, wine, shopping, movies and theater. Feel free to give her blog address to anyone who requests it.

Thanks for all your love and support.