Interim Report

I had not intended to post again until next Tuesday, after Pat's visit with Dr. Lily. As I had mentioned previously, the results of the scan that was taken Wednesday, will determine our course of action. But so many friends have complained about the information void, that I felt compelled to get some word out to you all. Our trip to Virginia went off without a hitch and Pat held up reasonably well. She is pretty much feeling herself, with strength returning slowly. I'll expand in the next post.

Getting Better

Just a quickie to let you know that Pat slept through the night and made two shopping trips today with only a minor nap between them.

A Hurdle

August 6 2:23 pm

I’m waiting for Pat to return from UCI. All is well, in spite of some difficult, but fortunately not dangerous, days. To fill out the picture, let’s flash back to last Monday - 7 days after the last chemo session. Characteristically, this is one of the toughest days. That Monday was no exception. Only this time it was the culmination of progressively more debilitating 7^th days. Pat stayed in bed most of the day and was bothered by flue like symptoms. The days had all been marked by a sore mouth and the very limited diet that her mouth could tolerate. Most of her calories came from cottage cheese, sour cream, noodles and baked potatoes or some variant thereof. While Tuesday was marked by some abatement of symptoms, there was not much gas in the tank and Wednesday was much the same. We had arranged to go to a Jazz concert at the Laguna Beach Hotel and Pat husbanded her energy all day so as not to have to cancel the outing. During the day Pat called her doc re getting blood on Thursday. Blood testing at the beginning of the day would determine the appropriate course of action. She did make it to the concert, summoning as much willpower as strength to get her through the evening. In the cool of the evening Pat experienced a lot of tingling in her fingertips, one of the common chemo symptoms.

Thursday Morning proved a minor variant of the chemo day schedules. We were in for blood testing at 7:30 and then off to Starbucks for breakfast. This time we went there by car rather than walking for obvious reasons. When we got back the results were there – no question about what to do - her hemoglobin had dropped to under 7 - the nurse said that she was surprised that Pat could even stand. She was scheduled for 3 units of blood, 2 on Thursday and a third today. Because of the swelling that Pat had experienced with her prior transfusion, the blood was administered slowly – almost 4 hours per bag. Sitting there, reading, I observed the metamorphosis; expression returning to her face and strength to her voice. I had to help her into the hospital on my arm - she left in full stride, on her own 2 feet – declining my proffered arm. . On the way out we couldn’t help but think that we should have listened to the nurse who was pushing for Pat to get the blood when she was in for the chemo. This morning we were both completely comfortable with her driving to the hospital alone.

It’s now almost 5:00 pm. Pat has returned from the hospital, having she stopped at Costco to replenish the food supply that had all but disappeared when she didn’t have the mojo to shop. When she pulled into the garage she called to me to the stuff put away, and headed of to bed. I’m betting that we’re back to the careful parceling out of energy with frequent recovery sessions. The recovery sessions will become shorter and less frequent. On Monday I’ll pick up Lauren and the twins at the Long Beach airport. Now we’re ready. Bring them on.

Last Session?

July 26, 2010, 11:45

I have just returned from a shopping trip for clay working supplies. The month between school sessions has me climbing the walls for the opportunity to get my hands messy so I have converted my workbench to be usable as either a sculptor’s studio or a mechanic’s knuckle tester. I picked up a few things at the seminal supply store, Aarvark, that is about 10 minutes away. The morning was cheered by a call from Lauren who had returned with the family from a 3 week road trip a few days early. Apparently the call of their own beds was too strong to resist. At least that’s the story that Lauren’s sticking to.

12:25 PM

Pat has just finished her lunch and the nurse is in to take her blood pressure. As I mentioned in the last posting, Pat saw Dr. Lilly last Thursday. Although her hemoglobin was a bit on the low side, he left the decision of whether or not to get a transfusion up to her. Pat had said that if she didn’t “need” it, she would pass. The nurse, on reviewing the record felt that Pat “should” have some blood and went off to call the doctor. There hasn’t been feedback yet, though I assume that the doc will repeat the message. So that’s all up in the air for the moment. The principle reason for the transfusion would be to up Pat’s energy level. She would be in for the blood tomorrow, if she elects to have it. Have I mentioned that the second and third sessions were at 50% strength because of Pat’s reaction. This session, like the fourth, was at 75% strength.

2:20

About 2 O’clock I dashed over to The Block on a 3 part mission. One was to get my blood moving again; two was to renew our supply of “Sweet Bites” at the Corner Bakery; and three was the acquisition of chocolate covered macadameon nuts. I completed the mission speedily, lest I delay our return home. I have resumed working on the blog as Pat enters the last hour of her treatment. Dr. Lilly was conducting clinic nearby and was kind enough to drop by to resolve the residual doubts. After some discussion he said that the only reason for having the transfusion would be Pat’s comfort and that could be done later if Pat’s energy was slow in returning. The fact that Pat could take the transfusion just before we left for the Bas Mitzvahs in Roanoke, three weeks from now, clinched it - no blood now.

So in 6 weeks Pat will be seeing Dr. Lilly for further evaluation after a repeat of her scan. If the scan is clear, Pat will have a bone biopsy to determine if further treatment is required. If either the scan or the biopsy is positive, then it’s on to plan B.

Has it been that long?

July 19, 2010

A query from a friend about the absence of new postings led me to check dates and, to my embarrassment, find that it is has been over a week since the last posting. In my defense let it be said that there is nothing major that hasn’t been said in one or another prior posting. Pessimists, during this hiatus, may have been thinking that it was because things were bad, and optimists it was because there wasn’t much to say. The optimists were right.

For those of you in a rush to get someplace, here’s a snapshot of how things stand today. The trend continues. Pat can do most anything on any given day, but on some days the burst of energy dissipates more quickly than on others. Most generally, it’s up and about in the morning. That includes shopping and/or lunch with one of the ladies. Then off to bed to recover with a nap. Pat is usually sufficiently recovered to prepare dinner, fearing the trauma of my hand in the kitchen. Last night, essentially having prepared things gradually during the afternoon, Pat sat and let me bring things to table while she relaxed. She even let me do the cleanup, but did not forgo the right to do the final tidying. By and large this week has been a bit more troublesome than the second week after the last treatment. We are looking forward to the almost normalcy that Pat experienced in the third week.

For those of you with a bit more time -

Saturday night we went out for dinner with the Levy’s. Sandy’s and Pat’s birthdays are close together so we have made it an annual night out. Pat prepared for the evening with a longer than usual rest. She had been doing some work in the afternoon that I had to tell her to stop. She didn’t fight it. We have discovered that social interaction is helpful, perking her up. Pat tends to let it go on, but I have been getting better at identifying her fatigue signs. I just have to ask her, “Are you ready to go?” and I’ll usually get a thankful nod yes.

This afternoon we set sail on a cocktail cruise around Lake Mission Viejo - followed by a picnic.

Thursday we will go to the Bowers museum for lunch with friends and a tour of the exhibition of Chinese mummies. As we are in week 3 since the last chemo, if history can be relied on, Pat’s energy level should be close to normal. With a cautious morning she should make it with flying colors. The challenge for me is to be alert any sign that she is running out of gas.

This Saturday is concert night at the Lake and we will be going. The performers are the founding members and principle singers of The 5th Dimension - Marilyn McCoo and Billy Davis.

The sixth chemo awaits us on July 26th and then a six week hiatus and retesting. The results will determine what, if any, additional therapy will be required. Having done all of our due diligence, we are proceeding on the assumption that things will go optimally, but with the realization that there may be more work ahead. Pat’s attitude is wonderful - her mantra is “Wait to worry” - and she lives it.

Look for the next posting right after her next chemo session. Can’t close without a renewed thank you to the many friends whose caring and sharing has taken so much weight off of our shoulders.

Fifth Session

July 6, 2010, 11:17 AM

Well Pat has closed her eyes, although she is not sleeping as yet. The drill was a bit different today because Pat didn’t have to see Dr. Lilly before starting chemo. He had seen her Thursday and cleared her for chemo after blood tests. The celebration of July 4th on July 5th forced the change from our routine Monday visits. As her hemoglobin was up a bit it was full speed ahead, or at least ¾ speed. So this morning began with drawing blood immediately followed by beginning chemo before the results were in. If you remember this differs from the protocol of prior weeks in which chemo was not begun until after the results of the testing were reviewed. This was possible because the session was begun with Rituximab, the only chemo agent that is not affected by the results of the labs. Those results arrived before it was time for the second step of the CHOP chemo. Pat’s hemoglobin, although not normal, was high enough to not cause any alteration in the rest of the poisoning or to call for the blood transfusion that capped her last session.

Oh yes - the change in routine. After dropping Pat off I scooted over to Starbucks to pick up a yogurt parfait and coffee for her. I had had breakfast at home, but got coffee for myself as well. By the time I got back to UCI, Pat was ready to begin. This was at least 2 hours earlier than in our prior visits and so the prospect of a much earlier departure brightened the day which was hazy with a light drizzle. Like clockwork the candy striper, a mature gentleman with a dark blue shirt, appeared mid morning with juice, crackers and all sorts of tummy stuffers. By 12: 30 he was back with lunch. What is the expression? - “too soon old and too late smart” - today we found out that Pat could request something other that the standard lunch of our prior visits - Soup - usually pretty good, a turkey and cheese sandwich, vanilla pudding -yucky, a bottle of water and a chocolate chip cookie. This time Pat opted for a tuna fish sandwich - not bad. I, not being a patient, was stuck with the usual - but it is significantly better than hunger.

12:47 PM

The nurse has just left after switching to the last of the poisons, excuse me chemo agents, cytoxin. That means that in another hour were out of here. I am about ready to close down the computer - to finish this posting at home. Pat has not slept at all this time out. At the moment she is scouting Paris in the National Geographic Traveler.

6:27 PM

Pat is preparing dinner, taking advantage of Trader Joe’s good prepared dishes. We were out of UCI before 2:00 o’clock. The mistiness that shrouded us on our way in in the morning was not diminished by our delight in getting out so early. On the way home we stopped at The Spectrum so that Pat could shop for a gift. Once home, not having slept during the day, she headed quickly for the comfort of the bed. Getting up from what has become her daily rest, she checked her phone calls and attacked the Trader Joe’s special with gusto anticipating the slow down that marks the second and third days after the treatment. How well she has been feeling the last couple of days is the carrot that keeps her looking past those difficult days. And then there is the possibility that the next treatment could be the last one.

As promised

June 27 2:16 pm

Where were we, oh yes, entering the dog days. It turns out that, although not a walk in the park, they were less troublesome than they had been in the prior cycle. And each day found her a little more like her old, I mean former, self. No more swelling and no more intense fatigue, although she does thrive on her afternoon nap and greets the bed like a dear friend each night. The width of her smile is a good marker of the days since her last treatment. Soup and dining invitations abound. Of course we revel in the fact that the next treatment is still another week away.

Dinners at friends’ houses were a treat. In the relaxed setting Pat does not have to draw on her store of energy while enjoying companionship. And she makes sure to get her rest in before the visit. That is a report of fact, not a request for more dinner invitations! You have all been so thoughtful in so many ways and so loving!!!!

We went to an Italian movie,” I Am Love,” with friends. It was quite arty, and though we all enjoyed it, we agreed that it might have spent too much time being “artistic”. But it was worth seeing.

I picked up Pat’s sister Delly at the airport Friday evening. She came in especially for a cousins’ meeting and, of course, to check up on Pat. On Saturday they went to the confab at Salka’s house in Glendale where keepsakes were selected from Salka’s household remains. That assemblage had been planned at Salka’s funeral where Pat, as the eldest of them, had been dubbed “The Queen”. Today Delly joined us in the Sunday morning ritual – a walk then breakfast at Bagels and Brew. Pat did her one trip around the lake in Rancho Santa Margarita. Right now the ladies are down at the pool with one of Delly’s friends who dropped by. Nina will be taking Delly to the airport later this afternoon. As things are going well, I probably will not be posting again until sometime after Pat’s visit with Dr. Lilly on Thursday.

Had I mentioned an interesting coincidence? It turns out that Pat’s cousin Jessica has been involved with a group planning to take part in a fund raising run for The Leukemia and Lymphoma Society. When she found out that Pat had lymphoma, she decided to dedicate her run to Pat. Jessica has adorned the first page of her blog, http://trainingwithpurpose-jess.blogspot.com/ , with the picture that you see above.