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July 5, 2007 We did have the most fun 4th of July! After all Blake's work, the place looked ready for a good time. Michael, Lynn, and Paula came early to help set up for games and music and food. They and others did so much throughout the party that all John and I had to do was sit around and visit with folks. Oh, and eat! FYI, this is the way to give a fiesta: Get all your epicurian friends to bring the food and just enjoy! Click here for some pics of the festivities.

I've envisioned just this kind of fun event ever since John's family and friends welcomed me into the clan . . . the lawn swarming with kids and dogs and flying volleyballs, people gathered in groups all around the deck and patio, great music and delicious food, warm laughter, twinkly lights blending the afternoon softly into night, John and I happily winking to each other across the crowd and everyone having a lot of fun. These are the most treasured of moments! Like Emily Dickinson, who said, "My friends are my estate," John and I are rich beyond words!

July 15, 2007 This has been a rough week or so. Since John began taking the Imuran, his legs and back have been aching deeply day and night, but especially at night. We can't quite figure out if it is just to be expected with the Imuran and whether it will pass as his body gets used to the drug or whether the combination of regaining weight he lost while on chemo and the Prednisone weakening his muscles is just plain wearing him out. While he can still recover his O2 level within a few minutes, 20 steps or more will make it plummet to the high 70% or low 80% level. He is fighting the tendency to feel discouraged and to worry that he's not getting better, or even getting worse. I plan to call Dr. B, his pulmonologist, tomorrow and let them know what's going on. He OKed John to drop the Prednisone to 50 mg/day, which we did yesterday, but the Imuran isn't supposed to be fully working for another week. I'd feel a lot better if we at least had an x-ray to refer to, just to be sure the symptoms are all due to exhaustion and not actual regression in his lung condition.

All of this is wearing on John. He's been struggling with the need to do some things differently than he is used to and worries about letting things go that I think  he really should for awhile (like mowing the lawn!). I've kidded him for years that I would only learn to drive that lawnmower when he was fully disabled, but I'm willing to take over while he builds his strength back up! He insists that today we'll mow together (him riding and me dumping the clippings), but I can't help worrying that it is just too much. Last night, Ed and Julie were over till late and we have more company coming this afternoon. He doesn't realize that, although visits cheer him, they also tire him out enough without having to mow the lawn, too!

I attended the Cancer Support Group again this week and received a very good booklet about care-giving. John and I went over a lot of what they said together, realizing that we've been instinctively doing pretty well, especially in allowing friends and family to help. We aren't as good about asking for help, but I think it's one of those gifts we need to give our generous neighbors and friends. It's hard to do, especially for John, who doesn't exactly view it as "delegating," but maybe this is all part of the lesson we are supposed to be learning as we go through this together. In the meantime, we lean on each other, physically and emotionally, creating fun moments of intimacy combing the cat or cutting John's hair, and letting the curls blow away for the birds to gather. Just like the breathing exercises we've been doing together. . . taking in the good and letting out that which needs to be let go . . . while repeating our new mantra: Anything worth doing is worth doing half-assed!

Five Things I'm Grateful for Today, July 17, 2007

Lola and Cindy, who have begun cleaning for me every other Saturday, thanks to Pat Olney's reference. They take enough of the load that I don't feel so overwhelmed by all I can't accomplish!

The incredible sunset I saw last Thursday, on the way to the Cancer Support Meeting, and which stays with me, cheering me at odd moments since then,

The chance of rain tomorrow.

The fact that I was able to learn to run the lawnmower when John got too tired yesterday. It isn't pretty, but it's done! Backyard, at least.

The fact that I am about to go out to the studio to play for awhile, while John visits with Rod Sando. So, for now, B-bye! :-)

July 21, 2007 Jeff and Vanessa just left with her parents and John and I are settling down to a quiet evening with the promise of a drop in by Rob and Paula. I really wonder what we would ever do without the support and generosity of our friends and family. I have been feeling disappointed in myself, lately, for not keeping up . . . with all the thank-you's and the news and the doing for others as they've been doing for us. Every day there is someone who sends a cheery email or a card or a call or a pie to remind us that we are in their thoughts and prayers. I used to be better at making contact with each one to say thanks for thinking of us, but lately I feel like I'm letting things slip through the cracks and I don't want those things to be my heartfelt gratitude to friends and family. John and I have begun to catch up on our sleep the past couple of nights, so I hope being more rested will allow me to get a better handle on things. Meanwhile, as I'm whining about things falling through cracks, John soldiers on with the incredible combination of uncomfortable, painful, and otherwise challenging side-effects he manages to tolerate each day and night with such patience. He is truly my hero!

July 24, 2007 John kind of glossed over Sunday night’s breathing event in his update. He was extremely out of breath after climbing the stairs and his heart raced for nearly an hour. We actually had to add one of his small oxygen bottles (at 5 Liters per minute) to the concentrator’s maximum 5 L/min, totaling 10 L/min. He had one canula in his mouth and one in his nose. But it worked and he was able to get his breath back after several minutes. We’ve been practicing breathing exercises when he’s not in pain nor struggling to breathe, so that when there’s a crisis moment John can focus more easily. He is really good at it (duh .  . . Palensky!) and can calm his body down within a few minutes, usually. That skill really came in handy Sunday night! We decided that may have been the last trip up the stairs for awhile.

Yesterday, after talking with Dr B’s nurse, we learned that the humidity and poor air quality of the past few days may have a lot to do with why his breathing doesn’t seem to be improving much, even with the Prednisone dose being raised from 50 to 80 mg and adding the Cytoxan. As long as he doesn’t exert himself much (ie. stays in a chair and refrains from walking anywhere) he can maintain good oxygen saturation, but his muscles are extremely weak, due to the Prednisone, and any small exertion will cause the O2 level to drop. Walking upstairs is just simply too much at this time, so we are looking into getting the hospital bed back and moving into the studio again. In the meantime, we camped out in the family room last night. We tried everything from chaise lounges that Lynn and Phil brought in for us to where we ended up: me on the couch and John asleep in the ergonomic chair he uses in his office. The whole thing confused Dandy too much, so she went off to sleep upstairs, as usual.

We’re going to see Dr. S in a couple of hours and then John will be admitted to SWMC for at least one night while Dr. B tries to figure out what to do to help him breathe. If this Cytoxan kicks in and starts helping, Dr. B is hoping to start backing off on the Prednisone again. That will allow John’s muscles to recover and, thus, put less strain on him when he tries to move around. As with everything, it’s all connected!

July 24th Later in the day This morning, John had an anxious moment and called me in to ask, "Tell me again why you think I'll be coming home from the hospital this time?" I could only say what I know: that he has come back from worse than this, that the doctor is only seeing him in the hospital because he's on ICU duty this week and it's the only way he can evaluate what's going on with John's lungs, that John is feeling pretty good now that the stagnant air has lightened up, that he is too strong, and it's too beautiful a day to leave.

I talked to a dear friend today who lost her husband to cancer several years ago. Apparently, he was more pessimistic than optimistic and she so admires John's positive attitude and strength. I really don't know how she managed to go through that terrible time without her husband's strength to lean on, as I am able to do with John. I depend on him to get us through the long nights and to share the bright days. How I love him!

July 26, 2007 I am without words to express my feelings about this turn of events. There's just a deep, silent prayer for strength and for wisdom and for all my love to be of some help to my beloved husband.

July 26th Later in the day  A wonderful gift of a friend wrote me these words which make my heart swell: Maria, I check the Palensky site often . . .of course it's to see how John is doing and always hoping for good news, (I was so saddened with today's note) but I know why I really check your site, it's to read your beautiful love story . . . of  a loving family, true, dear friends . . . its about all of you, and your strength, encouragement, humor, compassion, and admiration you have for each other . . . and the greatest of all is your LOVE . . . that will never wane . . . that is where you will get your strength . . . my thoughts and prayers are with you . . .

July 30th As long as I keep my attention focused on John, I'm able to handle this. But I never seem to be prepared for the moments when I'm thinking about something someone is saying to me and my stomach suddenly does an elevator drop to my knees or every night, so far, when a bone shaking stab of grief-pain runs through my body and awakens me at 2 AM. Each time, it's the physical reaction that hits first and then the delayed remembering of what is happening. My emotions seem to just turn in a flash, too. One moment I think I'm getting used to it and the next I'm exploding into tears of anger and fear. How dare the universe give me this wonderful man and then take him away so soon?! It's at these moments when the support of our family and friends sustains me. Thank you all for your kindnesses to me, but especially for the deeply caring missives you have been sending John. I feel so remiss in thanking each person individually, but I hope to be able to do so in time.

July 31st  In between his frequent mini-naps, I've been reading emails to John this morning, filled with memories of all the fun times you've all shared with him. Your emails make me even more proud of John, just knowing again how he has touched other lives. I find myself envious of those who got more years with him than I did, though I'd rather have had the time I've had, and be able to go with him all the way to the end, than to have missed it. I only wish I could divide my own remaining allotted time with him and wink out together. I would do it in a heartbeat.