Beth, Sunday, Dec. 26
Dearests: As I begin to write this, emotions are welling up tremendously again. They do that often these days. It's only been weeks, but it feels like seconds, minutes, hours, or as if it's never happened or just been a bad nightmare. Life is surreal, but it may be meant to be that way. As Desiderata says, "Life is unfolding as it should." Right now, I'm not much of a fan of Desiderata.
We've been through Thanksgiving and now Christmas without Jim and of course everyday since Nov. 8. I do not have the words to explain the state of my being at certain times. I only just watched for the first time the video of the memorial. I could not bring myself to see it before now.
We decided to have Thankgiving at the house. Our usual multi-guest list was kept to just family this year. I do not know how the holiday passed or the turkey got made. Jim's absence was/is palpable, and even now as I write, the time of silence we observed comes back to mind. It was an exquisite experience, and I mean that in the strength of the emotion at the time. This year, the family also felt it was important to continue our tradition of going to Maggiano's on Wisconsin Ave. for our traditional Christmas dinner together. So, Andy, Alena, Jamie, Blake, and I did just that. I really don't think I was there, however, as I felt I was "outside looking in" at a world I once knew and was a part of. The table where Jim and I and the family sat last year and years before that was familiar---though in another lifetime it seemed. It was only toward the end of the dinner that I no longer could contain some weeping. We talk about Jim everyday.
I thought I could go over to Howard University last week to Jim's office to get started on 33 plus years of a lifetime of work. Afterall, I thought, school was out, it was quiet, no one was there, and I could be alone, which I find is my state-of-choice these days. As I drove to the university, I started having an anxiety attack, and by the time I put the key in his office door, I felt faint. I walked in, took one very dizzying look around the office, ran my hand over what seemed every surface, and just melted. I somehow managed to get downstairs to the main office where his mailbox was, and it was there that I found refuge with colleagues and friends. It was an unbelieveable experience, one that I will not be doing again for quite some time...and not alone. The family and I will go at some future point.
All of you continue to be warm arms of love, compassion, support, and true friendship. It's curious how you know exactly what to do, say and when. I simultaneoulsy laugh and cry reading your letters and cards, and to do that has become second nature to me now! What a crazy picture that must be!
I've wanted to write for the longest time, and now it seemed the right time. I hope you all are doing well and know you each are in my heart. There are no greater gifts than you. My love and forever friendship to you all. May you have a very peaceful New Year.
Posted: Sunday 26th December 2004, 5:25 PM
Beth: Sunday, Nov. 14, 5:45 p.m.
You truly are the wind beneath our wings. You permitted us to sink to the deepest and soar to the highest all while being supported by your love and strength. Thank you for being you and for the love you continued to show throughout this incredible journey and on Friday. You know how to nurture and sustain, and I thank you from the very bottom of my broken heart. All my love and many thanks forever. Beth
Posted: Sunday 14th November 2004, 2:41 PM
Beth, Wednesday, Nov. 10, 7:30 p.m.
Dear friends and family: Final arrangements for Jim's memorial have been made. The memorial will take place this Friday, Nov. 12, at 3:00 p.m. at the Cedar Lane Unitarian Universalist Church, 9601 Cedar Lane, Bethesda, Md. 20814, telephone: 301-493-8300. A reception will follow at our home at 4 Spring Hill Court, Chevy Chase, Md. 20815; telephone: 301-656-3353. Our family invites you to join us in celebrating Jim's life, and in doing so, be with us on this very special day. In addition, we would like to ask if any of you would like to say a few words or thoughts you may have about your relationship with Jim. If you would like to do so, please let me know via e-mail at firstname.lastname@example.org as soon as possible so sufficient time may be provided. If you feel more comfortable having someone else read your prepared words, just let me know. Please let us know as soon as possible if you would like to speak.
We look forward to being with you on Friday. Much love, Beth and family.
Posted: Wednesday 10th November 2004, 4:39 PM
Monday, Nov. 8, 11:51 p.m.
My Jim died peacefully tonight in our home at 7:48 p.m. surrounded by our wonderful family and holding my hand. It's been an exhausting day for us, and there is much to take care of in the days to come. I will be posting to this site the memorial arrangements. Please know how much you mean to me. Love, Beth
Posted: Monday 8th November 2004, 8:54 PM
Beth: Monday, Nov. 8, 10:30 a.m.
I thought I would be able to go to work today as usual at 5:30 a.m. I left Jim asleep having given him his morning pills, which he barely was able to swallow. He was in and out of a coma-like "sleep" taking one labored breath every so often. Once I got to work, I knew it was not the right thing for me and that I no longer could hold it together being away from him. As soon as my boss came in at 7:00, I broke down and let it all out. I told him the right place for me now was at Jim's side for as long as needed. I left immediately to go home and will remain so here. Jim no longer can move by himself or keep awake. We are together at home the way it should be. I could not leave his care up to anyone, including the wonderful nurses from hospice. Regardless of who comes, I will be here. I feel so relieved that I cannot even tell you. I talk to him constantly, touch him all the time, and tell him how much I and you love him. There is all there is to do and say. Thank you for everything. We are here, and you are here with us. Much love. Beth
Posted: Monday 8th November 2004, 7:38 AM
Beth: Sunday, Nov. 7, 3:45 p.m.
Jim came home Friday afternoon via ambulance. It was safer that way, and the attendants were able to gurney him into the house and into bed. We now have oxygen for Jim, and he uses it pretty much most of the time. The decision was made to discontinue chemo and go with hospice, in which Jim now is enrolled. A wonderful hospice RN came out to the house this afternoon to talk with us and give us the information about how it all works. The main goal now is to keep Jim as comfortable as possible in our home and pain-free. This weekend, we had a semi-family reunion with my brother-in-law Roger and wife Bertha (Jim's brother). It was a good to re-establish ties and become a family again after some time had passed. All things are possible, and this certainly proves it. There is not much to say except the time we now have is spent doing as much for Jim as possible in whatever way he needs it. Many thanks everyday for all you do for us and the love you impart. You are wonderful family, and we love you.
Always, Beth and Jim
Posted: Sunday 7th November 2004, 12:54 PM
Beth: Wednesday, Nov. 3, 10:00 p.m.
I just got in from Sibley Hospital where Jim has been admitted via the emergency room. His strength gave way today, and he was not able to support himself once he got up on his walker. He fell forward and flat on his stomach, though in a twisted position. I knew I could not lift him from such a position, though I do lift him from the bed and chair. The doc told me not to move him for fear of something being broken. I called 911, and the ambulance took Jim to Sibley, where we were in the emergency room for about six hours. They are wonderful. In fact, the attending doc is the husband of the doc who put in Jim's pacemaker! Anyway, Jim was checked out. No broken bones or concussion, thank goodness, however, his heart rate was extememely erratic and very, very high. Blood pressure was very, very low. Not a good combo. Between the morphine for pain and the heart meds, he was very uncomfortable. He was in a lot of pain. All he kept saying was that he wanted to go home. Of course, I said I would do whatever he wanted. However, the attending doc said Jim needed a lot of attention tonight and needed to be made very comfortable and I needed some rest. Smart doc. Around 9:00, they took him to a private room where he was made very comfortable. I gave him a couple of "Boosts" to drink, since he did not have anything since breakfast....if you can call what he eats a meal. I will be at Sibley bright and early before the docs make their rounds so I am able to speak with both of his. That's about it. Time for a quick dinner and bed. I'll keep you posted.
Posted: Wednesday 3rd November 2004, 7:18 PM
Beth, Friday, Oct. 29, 6:15 p.m.
Jim and I JUST got home from the oncologist's office from Jim's first-time avastin treatment. What a day. We arrived at 12:45, and Jim already was tired and drawn. As per the usual, his blood was taken, and we waited for the results to come back. His crit is 26..low. Today seemed more difficult for Jim to concentrate, talk, keep awake, and even respond to the doctor..so much so that the doc even waited a bit before administering the new drug and said that perhaps we should think about the new treatment because this drug would really have a "double whammy" effect on Jim given his low stamina and physical condition and response (or lack thereof). It was 2:00 before the treatment began. Jim got all hugs and kisses from the nurses and receptionists...they are such wonderful folks and so upbeat...a really unbelievable group of human beings. Everyone chided Jim for not eating his lunch and told him he "must" eat. I, too, tried to coax him into eating the food I brought but to no avail. So, he slept in the chair while I read. The avastin has some very serious side effects for which we will watch this weekend. The doctor and we will reevaluate Jim on Monday to determine if he is to continue treatment. We will wait till then. Jim now has tenderness where the cancer is in his hip and abdomen, which was evident from the doc's thorough exam. The numbers came back high for his white cell count (indicates infection) but nothing that indicates leukemia. No news is no news. After chemo and a couple of flush bags into his port, Jim was back in his wheelchair, and off we went home, exhausted, exhausted, and pretty tired. He barely made it into his chair before collapsing in a deep sleep. We're not to give him an IV tonight, as he had plenty of fluids today at chemo. Well, that is somewhat of a break for us. It's Friday, and for that we both are grateful and happy. We want you all to know that we keep you close in every way, and to those of you doing the "peoples' marathon" this Sunday, we wish you a gentle, safe, and happy journey. We will be with you all the way supplying encouraging and loving words. To all of you supporting the runners, bless you. We truly are with you every single day. Much love and always, Beth and Jim.
Posted: Friday 29th October 2004, 3:28 PM
Beth: Tuesday, Oct. 26, 7:45 a.m.
Dearest Richie, Sandy, Peter, Irene, Jim, Patty, Rosanne, Margaret, Steve, Arlene, Fred, Penny, Frances, Patu, Christelle, Denis, Kathy, Vince, Pat, Lee, Jon, Christina, Kathy, Lynn, Eric, Mical, Richard, Lauren, William, Mark, Barbara, Duane, John, Jim, Francie, and those not mentioned on the list: Words cannot express our heartfelt feelings Jim and I have for you and all your generousity. Your wonderful "T.O.T." contributions have sustained us through these many, many weeks of exhaustive trips to the doctor and visits to and from the hospital. We literally have come home only with enough strength to order, eat, and go to bed! You've sustained us with both love and sustenance, two important building blocks of living. Because of you, your support, and ever-present kindness, Jim and I are wealthy beyond our dreams. Please know that without you we could not have achieved as much as we have thus far. You mean the world to us, you are our family and friends all wrapped in one. YOU are the best gifts we ever have received. We are forever with you in all you do as you are with us. Our hearts belong to you. Your well-being is our wish. Love, forever and always, Beth and Jim.
Posted: Tuesday 26th October 2004, 4:46 AM
Beth: Saturday, Oct. 23, 6:45 p.m.
So much has happened this week. Jim has continued to receive fluids each day and seems to have responded well. The week went smoothly, and I was anticipating Friday's visit with hospice. However, on Thursday, it just seemed something was not right. Although Jim's oncologist saw him at the house Friday a week ago, we had missed two Fridays at his office, so no blood had been taken, etc. I just felt we were rushing into hospice. So, I decided we would go into the doc's office on Friday to see how he was doing. Upon arriving, Jim was weighed and had his blood pressure taken. He has lost almost 20 pounds since this whole thing began. I had not thought it would be that much. His appetite is so suppressed even with the added appetite stimulant. But, he has been trying to eat, and for that I am so grateful. Blood pressure was 100/70 ... quite OK for him. Jim, the doctor, and I had a very good discussion. As you may already know, the CT scan showed Jim's cancer had not responded to any of the chemo he went through and, in fact, showed it spread to the iliop-soas muscle, which is consistent with Jim's description of new pain he has been having. He also said it hurts more around his ribs than before. While we were talking, the CBC came back and, sure enough, Jim is anemic again with a crit of 26. The transfusions just seem to be eaten away almost as fast as they are given. His white cell count was extremely high, which also indicated infection. "Leukemia" was mentioned, but the doctor thought Jim's cancer was not that. The doc will watch this carefully. Jim's color is pale, and his strength is minimal, but we continued talking about possible treatments. My concern was that Jim had been discharged from care now that he had not had any chemo and was going to get hospice. But, that was not the case at all. Anyway, the doctor offered Jim the possibility of receiving a newly approved (Feb. 04) chemo called avastin. Again, there never are ANY promises with treatment ... only hope ... hope that the tumor will perhaps shrink and take some pressure off the surrounding area. The decision to continue or not is a difficult one, and we were left alone for some time to talk. Regardless of what Jim decided, we were assured of continued care with his oncologist, which made us both feel very, very good. Jim's ultimate decision was to go ahead with chemo every other Friday starting next Friday. He felt that to not do so would be to give up, and that is not what Jim is about. We did much soul-searching and talking before making this decision, and Jim knew what he wanted to do. So, that is what will be done. Jim also will continue to be on home IV fluids during the week as he has been for the last week. He now is sleeping peacefully. The nights still continue to be an up-and-down time spent between bed and chair. Some nights are worse that others for him, and lately this has been the case because it is getting harder for him to completely clear his chest and throat of the viscous fluid that accumulates. This makes him very anxious and uneasy, and even the nebulizer does not help now. I am trying some warm tea when it gets really bad, and sometimes that helps.
Today is our anniversary, and Jim's present is to get to watch Redskins Sideline on T.V. with any interruption from me!!! We will share a wonderful dinner watching T.V. and just being together. I can't ask for anything more. It was a beautiful day today and was exactly as it had been on the day we were married.....sunny, cool, and a rainbow of color from the fall leaves. The one big and most important difference, however, is that we now are celebrating our anniversay with ALL OF YOU! This is the best gift of all, and for that we (me) will raise a glass of champagne and say, "To life, love, hope, and friendship!"
Posted: Saturday 23rd October 2004, 4:30 PM
Beth: Tuesday, Oct. 19, 6:30 p.m.
Hello all you wonderful, miraculous, supportive friends and family. It's been a week of extremes. Jim seems to be rebounding from his lethargic, almost moribund state now that he has had four IVs and is somewhat hydrated. In fact, after speaking with the doc yesterday, it was decided to continue a bag a day for the next four days! We've got it down to a routine. Around 6:00 p.m., Jim goes into bed, and I hook him up to the IV. He rests comfortably for awhile. His speech is so much better, and his movements are much-improved. I am cautiously taking this all in, knowing that if this is the "rebound" period that often is spoken about, now is the time to take advantage of it. I'll determine very soon if it is so. If so, I hope to show up soon at our favorite "haunt" on a Saturday for just a bit and have him share in all your love. I'll let you all know. I'm to meet with hospice folks on Friday when they come out to the house. There will be much to discuss, but it seems to be the right time to get this all started. Jim's pressure sores are all but gone. He is just so terrific with everything. Almost any movement exhausts him tremendously, but he does what is needed, when it is needed. I cannot even imagine.
So, life continues, as it should with all its ups and downs. However, the good much outweighs the bad this week, and we'll take it! Y E A ! ! !
Have we told you lately that we love you? : )
Posted: Tuesday 19th October 2004, 3:39 PM
Beth: Saturday, Oct. 16, 1:15 p.m.
As a result of the doctor's visit Thursday, Jim now is on IV fluids for the next four days at home. His severe dehydrated condition has played a big part in his overall well-being, or lack thereof, and the hydration hopefully will help him feel somewhat better. A nurse came to the house late Friday night and instructed me on hooking up each of the four saline bags to his port(we now have an IV pole in the room) and how to inject Jim's port with a syringes of heprin (to prevent coagulation) and saline (to flush the port). Each IV bag takes about 3 hours to administer, and the one last night seemed endless since we started it around 11:00 when the nurse left. I removed it around 3:00. Jim was quite restless and kept wanting to get out of bed. As difficult as it is for him to do so without any "extras," it is especially so now with the IV pole and bag trailing after him. But, we walked the floor whenever he wanted. After the IV was through, Jim spent much of the night between bed and chair. I'll probably start the second bag tonight around six, so it will be finished at a decent hour. But, as I've found in our home lately, we have no "normal" hours or do things when others do. On Monday, I'll see how Jim is doing and let the doctor know. We'll either end the hydration or have more supplies brought out to the house. Right now, it will be a weekend trying to catch up on sleep when possible, doing LOTS of laundry, and looking at beautiful skies. The air is so clean and smells so good. I think I'll walk Jim over to an open window and have him enjoy the beautiful day! If you haven't done so already, go to an open window and join us in spirit!! Much love, the Starrs.
Posted: Saturday 16th October 2004, 10:50 AM
Beth: Friday, Oct. 15, 6:57 a.m.
Jim did not go to the doctor's office yesterday to receive the new chemo treatment. Wednesday was a horrific day and night for him. He could barely speak, his breathing was irregular, he did not eat or drink, and it looked like his system truly was shutting down. The night seemed endless. I was so worried Wednesday night that I called the oncologist. Thankfully, he was the physician on-call. We spoke at length and agreed we should see how Jim did during the night before making any decision about coming in on Thursday. Wednesday night mostly was spent by my holding Jim's hand, trying to make him as comfortable as possible, and a lot of crying. It's amazing. Through it all, he had the strength to say, "Easy, Bean." I could not believe it. He comforted me!! That's my Pooh. Anyway, daylight finally came, and the situation had not improved. Needless to say, I could not even entertain the idea of getting Jim ready to go to the doctor. After speaking with the doctor in the morning, he said he was coming out to the house in the afternoon! Jim was exhausted, and the pain was returning even with the meds. We have tried to cut back on the doses to see if he could tolerate less. He was doing fine with this pattern for a couple of days. Thursday brought no improvement, however, in his condition. Jim still was very unresponsive and was visibly not feeling well. Around 2:30, the doctor and our favorite nurse arrived at the house. Jim got a good exam while in bed. Dehydration always is a factor now, and that seemed to be playing a major part in his condition. It may seem he is taking in enough fluids with Ensure Plus, Gatorade, water, applesauce, etc., but it still is not sufficient to maintain body health. The doctor said Jim's pulse was strong and his lungs sounded OK. However, he also said he received the complete CT report back from last Friday. Unfortunately, it showed the tumor that invaded the secrum section had not responded to the chemo and in fact had grown. Jim is unaware of this but certainly feels the pain again in the area. This is what he was feeling.
The doctor and I spoke, and we decided it was time to get assistance in the house, which would be in the form of Montgomery Hospice. The doctor also will order an IV for Jim to get some fluids back into his system. I am not sure when either will occur. I said it would be fine for hospice to come during the day. I think the doctor was more concerned about my getting sleep and rest and said something about caregiver's syndrome. I admit I did not hear it all, since I still was focusing on "hospice." I understand Montgomery Hospice is excellent.
Thursday evening, after I had composed myself, I once again decided not to take this whole thing lying down and without a fight. I force-fed Jim half of his dinner, gave him ice cream, made him sip all sorts of drinks, and gave him a creamsicle and popsicle, which he ate with a grimace. I did not care what kind of face he had as long as he ate it and got sustenance. Gratefully, all this seemed to improve his speech just a bit, and he might have gotten some needed, albeit not enough, fluids and energy back in. I will continue to do the same today and this weekend in the hope of stemming any further deterioration.
So, that is the story as of this morning. It's an up-and-down process, and Jim is doing pretty good given what his has gone through. He is amazing.
Once again, we send our love to you and thank you for yours. Also, I want to extend a special "thank you" to Sandy for being such a big part of the Web page and collecting the names of the volunteers who would be available to help. Thank you, Sandy. You're a true "PIC" (partner-in-crime)! : )
Posted: Friday 15th October 2004, 4:00 AM
Beth: Saturday, Oct. 9, 6:45 p.m.
We knew you all had pull. Monday's transfusion brought Jim's crit to a wopping 31.7 as of yesterday!! Way to go!! The nurses hugged us, and I was quite amazed. Now, the trick is to keep it up. Jim is quite weak, as he has been for quite some time. We used the wheelchair for the first time to go to the oncologist's office on Friday. It really helped so much, though I'll probably be building some muscles in places I never even knew I had thanks to lifting it in and out of the van! Hey, it's good exercise is the way I think of it. It seemed odd not to have to run off to the radiologist at Sibley once we arrived at the oncologist's. Jim's last treatment to his lung was Tuesday. We were able to talk a good bit with the doctor without having to be anywhere else. Besides Jim's overall weakness and slow speech, the most obvious problem he is having is with his legs. The doctor did some strength tests and immediately ordered a CT scan. We had to wait an hour before we could go upstairs, but that was fine. The doctor thought because Jim could not lift his legs against the doctor's palm with any strength, the tumor might be pressing on the spinal cord or even invaded it. That was the reason for the CT. Jim had the CT, and we went back down to the doc's office to wait for some news. The very good news is that the spinal cord does not seem to be affected. The general news is that everything appears the same as the very first CT Jim had. No improvement or shrinking of tumor. Jim's muscles have atrophied tremendously in the two months since diagnosis. The disease is ravaging.
We go back to the doctor on Thursday, this time, to see if Jim is strong enough for chemo, which, if it does take place, will consist of the new one-treatment chemical. All will depend on Jim's condition.
I've caught a cold and now sound like Marlene Dietrich......deep-voiced! A three-day weekend is a welcome change in our home. We do not have to run anywhere.
You all have constructed such strong bonds between us and you that whatever you send our way arrives with such gusto! You are our energizer bunnies! We love you. Beth & Jim (and of course, Dibley) : )
Posted: Saturday 9th October 2004, 3:47 PM
Beth: Wednesday, Oct. 6, 2:25 p.m.
A six hour and forty-five minute two-unit transfusion on Monday at Sibley Hospital started the day. The transfusion center atop the hospital is a quiet reprieve from the hustle of a regular floor. Several lounge chairs line the large room, each equipped with personal television. Jim and I chose to sit in a two-chair sunny enclave minus TV (OK, OK, I selected the space). Once Jim was hooked up to the first bag to flush his port before receiving the two bags of blood, we settled in for the long day. I brought lots of goodies for us to eat (Jim looks at the food and maybe touches it. Rarely does he really eat it), and several times I visited the cafeteria to bring back what I thought were enticing goodies. Some were, some were not. The wonderful nurses monitored his vital signs every 20 minutes or so. He was stable for the most part and tolerated the transfusion well. He slept on and off during the day while I worked at the table next to his chair. Toward the end of the last unit, Jim got a diuretic to help combat the swolleness of his body as a result of his medication. For the most part, however, all went just fine, though we were late for his radiation treatment at the end of the day. At the end of the transfusion, I bundled him in the wheelchair, and off we went to the cancer center in the next building where he received his next-to-the-last treatment. Because we had to stop and get new medication on our way home, we did not make it home until almost 6:30. We missed the delivery of the wheelchair and walker, which did not make any difference since he was much too tired to go anywhere except to bed. Though I'm not expecting a dramatic rise in crit (from 22.7), I am hopeful it will rise at least 5 points by the time we go Friday to the oncologist (that second unit of blood was a wopper). Hope, hope. I always am looking for positive signs and all the time tell Jim that he is doing great. Well, yesterday I did notice that his usual out-of-breath puffing due to the collasped lung seemed to diminish somewhat, and he looked a bit stronger. His speech still is slow and difficult. When I asked him, he said "no," he did not feel stronger, but I do think so. Also, he is coughing up almost no blood now as a result of the radiation. We'll find out next week how the lung tumor reacted, if at all, to the 10 radiation treatments (his last was yesterday). The wheelchair and walker arrived last night, and Jim was able to move around a bit steadier, though still VERY slowly, holding onto the walker. It still is incredibly difficult for him to get in bed, in or out of a car, or do anything that entails him lifting or lowering his legs and body, as he has lost all but a little strength. He sleeps most of the time. On Friday, Oct. 15, Jim will have a fourth chemo treatment, but this time with the single new medication. With any luck, his blood count will remain strong.
I now must digress from these updates to extend our love to you all and say we are overwhelmed by the phone calls, notes, cards, flowers, food, soup, stuffed animals, and pictures sent our way. And, you Needwood nighties, you know who you are. WOW...what a card. It was so large I put in on the mantle in place of the picture!!! Lots of love to each and every one of you who carries us with you! Thank you. I am sorry I have not thanked you all personally or returned phone calls for the most part. It's a wonder we get to where we have to, but we do what must be done. Enough now.....a big thanks from us to you. Your bonds of friendship are the best medicine to help us through this. And now to Eric and Peter, our lifelines to the outside world. Words cannot express what this Web site has meant to us. You've given us a gift of life, and for this we are eternally greatful. Much love to each and every one of you, Beth & Jim
Posted: Wednesday 6th October 2004, 11:33 AM
Beth: Saturday, Oct. 2, 10:50 a.m.
Friday started out normal enough for us, but it quickly changed. We arrived at the oncologist's office about three hours before Jim had to be at Sibley Hospital for his radiation treatment. The usual blood was drawn, and we waited for results. In the meantime, the doctor talked with Jim to ascertain how he was doing and listened to his lungs and heart. The collapsed lobe still is there, the fluid buildup can be heard, and Jim's breath is very, very labored. Once the results of the blood test came back, it showed a critically low hematocrit of 22.7, dangerously low and well within the range of transfusion. Several decisions quickly were made. First, the low crit level necessitates another two-unit blood transfusion. We will spend time today, Saturday, at Sibley getting Jim cross-typed in preparation for the transfusion Monday, which will take about five hours. For safety sake, cross-typing occurs EACH time a transfusion is ordered. Next, Jim's chemo regimen will change. Instead of getting a two-combo cocktail of chemo, he'll be getting one that consists of gemzar. The thinking here is that the carboplatin is eating Jim's good red blood cells so quickly that he cannot replace them adequately. Due to the dangerously low crit level, Jim is unable to do most things himself. It also makes it hard for him to think clearly. It is difficult for him to walk, talk, stand up, or eat. In addition to the blood transfusion on Monday, he also will be getting his next-to-last radiation treatment to his lung the same day....though much later than usual. He will be beyond exhausted. The doctor told us he is to remain quiet this weekend and in bed to preserve what very little strength he has. Regarding next week, I cannot forecast. We are taking it all very slowly. We are hoping the effects of Monday's transfusion last longer than the first and the chemo change proves to be positive.
We are sending our love. B&J
Posted: Saturday 2nd October 2004, 8:06 AM
Beth: Thursday, Sept. 30, 6:50 a.m.
Wednesday was a three-ring circus for us. In the early morning, Jim had his first (and probably last) visit from the home nurse. Adam was skilled, compassionate, and took his time. He said we were doing a great job on Jim's pressure wounds, and one had healed completely, so there was no reason for him to come back for visits. He did, however, do a vital sign check and found that Jim's resting heart rate was 120 beats pm. Very high. Jim's breathing is in distress because of the collapse of part of the lung. His breathing is irregular, he gets very light headed, and is unstable when he gets up. His morning meds took his heart rate down a bit to a more acceptable level. We're also going to get a walker for him to use, so he will feel more steady when he gets up. Right as the nurse was leaving, the hospital bed arrived. I ordered a hospital bed Monday in the hope that Jim would get a better quality rest and be able to get out of his recliner in which he spends so much time. The bed is fully electric, and we ordered an air-flow pad overlay that pumps air through a mattress so Jim's body is not having pressure in any one spot all the time. It is just like the one he had at Sibley Hospital. He rested in it for about an hour. Soon after, it was time for Jim to go to Sibley for his consultation with the radiologist and have his sixth radiation treatment to the lung. The doc said the gurgliing we're hearing as Jim breathes is the result of the radiation. Jim certainly is coughing up much less blood, which is good. He still is very, very short of breath, and the hope here is that the current course of radiation "will open the lung up." We'll have to see. Monday's X-ray showed no change. However, next week's may. By the time consultation and treatment were over, Jim was absolutely exhausted. We piled into the car and headed home to some warm soup and Gatorade, which was all Jim could get down. His appetite is not great, and it's a job just to get him to eat. We're trying six small meals a day now, which might be better for him. Jim coughed most of the night. Though he tried the new bed, he could not get comfortable and went back to his known entity, his recliner, where he fell asleep about 2:00. About 5:00 this morning, he came back to the hospital where I left him sleeping. Hopefully, he will get some quality sleep. Jim has radiation through next Tuesday, This Friday, we also meet with his oncologist, and he has blood drawn for a complete blood count. I'm hoping that some good rest might make him feel better. He is trying so hard. I read your postings to him each night, and he nods with appreciation and love. You all continue to amaze us. Many thanks. Beth and Jim
Posted: Thursday 30th September 2004, 3:48 AM
Beth, Saturday, Sept. 25, 4:30 p.m.
It was Thursday, not Friday as I had posted, that Jim came home from the hospital. It's easy to get days confused. Jim had a restless night Thursday at home, and little sleep meant he was pretty wiped out for his busy Friday. He had his 10:30 a.m. radiation treatment at Sibley Hospital. This third out of 10 radiation treatments is to help stem the blood he is coughing up and hopefully improve the collapse to the right upper lobe by allowing it to reinflate and get more breathing capacity. Any exertion now has Jim gasping for breath. At 1:00 we were at the oncologists for his third round of chemo. Before doing any chemo, Jim's blood always is drawn, and a complete blood count done. Unfortunately, his hematocrit is back down to 26. To help stop this backward motion, the doctor recommended an iron drip be given, as well as a B12 shot. Before the iron could be given via his port, however, a test drip must be done to see if he was allergic to the iron as given. This took about 40 or so minutes, which set us back some as far as getting out at a decent time or allowing the nursing staff to begin their weekend. Jim took the dose in stride, thank goodness, and the flushing of his port and the three bags of treatment were ready to begin. Although we were there for over five hours, we made our Friday afternoon "our special" time by having take-out lunch as has become tradition. This time, we remembered the CDs for his new CD player, and it turned out to be a gentle time for both of us. Once home, the mood changed, and Jim's pain increased, especially around the ribs. No amount of meds seemed to help for long, and he spent much of the time in his chair very uncomfortable. He slept on and off throughout the night. Today, Saturday, we rested (things seem better in during the day), and he slept a good part. His appetite today is much better than the zero calories he took in Friday due to his double-whammy day (radiation and chemo). With the windows open in the house and the gentle breezes coming through, we are "enjoying" a peaceful end to the day. We again want to thank you all for the magic you send our way. We truly feel it, and miracles can and do happen. I do believe, I do believe, I do believe ... .
Posted: Saturday 25th September 2004, 1:38 PM
Beth: Friday, Sept. 24, 6:30 a.m.
Jim is home! I always feel it is a positive sign when the "patient" wants to GET OUT OF THE HOSPITAL regardless of how wonderful the staff is (and Sibley's is) and how tasty the cuisine (it's hospital food). Well, Jim wanted home, and so it was. We worked like a well-oiled machine yesterday. I had the discharge papers brought down while he was eating breakfast, a wheelchair ready to take him over to the cancer center for his 10:30 a.m. second radiation treatment, and his bag ready to go. In fact, he even wore his gown and robe over to radiation so he would not have to undress again once he got there (we've learned that conserving energy as much as possible is paramount). Knowing how exhausted he would be after treatment, he did not even get dressed in street clothes. He came home in gown and robe, patted Dibley on the head (our standard poodle), and immediately settled into his chair and fell fast asleep. Last night was a bit different, however, as Jim was up about every hour throughout the night with some pain and discomfort. Not unusual right now.
Today, Friday, is a very full day. Jim will have his third radiation treatment to the lung at 10:30 a.m. at Sibley and will then go for his third round of chemo at the oncologist's office for the rest of the afternoon. Once again, we get to sit atop Wisconsin Ave. having lunch together and starting the weekend a bit early. We also should get results from the CT scan today at the doctor's.
After reading and rereading your many posts on the Web site, our emotions ran very high last night. Jim and I know we have thousands of arms around us, embracing us, and easing the road ahead. Love is wonderful...you show it everyday. Jim and I are hugging back.
Posted: Friday 24th September 2004, 3:50 AM
Beth: Thursday, Sept. 23, 6:20 a.m.
Yesterday was awful. I've never seen Jim more emotionally upset and afraid. When I arrived just before noon to have lunch with him, I found his bed empty. He had been taken over to Sibley's cancer center to be "mapped" for radiation to his right lung. It was close to two hours before he was back in his room, having not only been mapped but also having received a first dose of radiation to his lung. He did not expect this, and it through him off.
Anyway, he was exhausted and crying when I finally did see him. I just wanted to take him up in my arms and make it all go away. So, after a lot of hugging, a cool wipe-down with some "good" smelling cloths, a few cookies, some more hugging, lots of gentle words, lots of reassurance, more hugging, and calls from daughter Jamie and son Andy, Jim calmed down a bit and drifted in and out of sleep. He ate all of his dinner and was in the care of his wonderful, compassionate nurse Emily, whom we've come to appreciate tremendously, when I left Wednesday evening to go home. God bless nurses. They do a very difficult job.
Jim is to receive nine more consecutive radiation treatments. I'll find out more this morning when I'm at the hospital.
You are all immensely generous with your love and compassion and so much more. Jim is using it as quickly as you give it, believe me. We love and miss you all very much. We'll be back....that I promise!!!
Posted: Thursday 23rd September 2004, 3:34 AM
Beth: Wednesday, Sept. 22, 9:51 a.m.
Give with one hand and take away with another. I'm truly sorry, but I would like to ask that you NOT VISIT Jim at the hospital until further posting. He is exhausted, and some alarming, though not too unexpected, events have happened. First for the good news. He will not need another transfusion yet. We thought his crit had become very low again, which would have necessitated another transfusion. Today, it was 32! Better than it had been. His blood pressure also is up, which is due to the fluids, etc., being dripped in via his port.
We've had quite a scare, however, as Jim now is coughing up blood. It appears that he has a collapse of his right upper lobe, and what he is experiencing is post-obstructive secretions. He also has fluid in the right plural space. The radiologist will be brought in today to discuss a radiation treatment to the area.
Considering his exhaustion and emotional distress right now, it is best that he remain quiet at the hospital without further visitors.
Thank you, thank you, thank you. -Beth
Posted: Wednesday 22nd September 2004, 7:03 AM
Beth: Sept. 21, 12:30 p.m.
Jim has been admitted to Sibley Hospital. We are not sure how long he will be here, but if you would like to visit--A VERY BRIEF VISIT--would be OK. He is in 523 West. Please don't bring anything, just yourself.
Posted: Tuesday 21st September 2004, 9:37 AM
Beth: Monday, Sept. 20, 1:50 p.m.
Jim is scheduled for a CT scan tomorrow morning, Tuesday, Sept. 21, at 8:30 a.m. at Sibley Hospital. It's been a couple of very rough days for him painwise, and the decision was made just a while ago to do the test earlier than expected.
I don't know what more to say. Maybe just "Think wonderful thoughts."
Love, Beth and Jim
Posted: Monday 20th September 2004, 10:51 AM
Beth: Sunday, Sept. 19, noon
Jim left Sibley Hospital Thursday, Sept. 16 with a crit of 31. However, on Friday at the doctor's, the crit already was down to 29.4. Hmmmmmm. Not exactly what we had hoped for. He got a shot to help raise it. He also now is taking iron supplements.
Blood pressure was 96/67, around what it's been. Not great, though.
Friday's appointment at the oncologist's office consisted of more than just a blood test. Jim was experiencing a couple of new pains that the doctor said were related to the primary back area where the cancer metastisized. We're watching closely of course.
Jim is tentatively scheduled for his third round of chemo next Friday, Sept. 24. Ten days later will be a follow-up (either PET or CT scan)at the hospital to determine the effect of the chemo treatments.
Jim and I are looking forward to the time when we can see you all once again. Hopefully, he'll be feeling stronger and up for going out to one of our "regular" gatherings very very soon.
Again, we want to thank you all for your wonderful cards, thoughts, calls, flowers, food (YUM!), and laugh-loving messages. We truly are very, very rich and blessed in knowing you and having you in our lives.
Beth and Jim
Posted: Sunday 19th September 2004, 9:11 AM
Beth: Thursday, Sept. 16, 9:18 a.m.
Jim is being released today from Sibley. His elevated heart rate is under control, and the two units of blood brought his low crit up to 31.9. I'll be picking him up this afternoon for the ride home and to get him settled back home. Tomorrow afternoon it's off to the oncologist for his standing Friday visit and perhaps to determine if and when a chemo treatment is scheduled.
Again, thank you all for everything.
Posted: Thursday 16th September 2004, 6:21 AM
Beth, Wednesday, Sept. 15, 9:20 a.m.
Jim's overall condition on Tuesday, Sept. 14, dictated we go to Sibley Hospital Tuesday morning for the two-unit transfusion. We originally were going to wait until Friday's appointment with the oncologist to decide if it was needed, but it was evident all along that it was. Jim was admitted to the hospital at noon and was in bed by 1:00. This also was a change from what we had expected to be an "in-and-out" event. After cross-typing, double-checking, and doing everything necessary that they do, the first unit of blood was administered starting around 2:00. By 7:00, the first unit had been given, and Jim was waiting to receive the next. He rested throughout the day while having the transfusion and even had his pressure sores attended to by a professional who showed us many "secrets" of the trade and gave us much help.
His pain was being managed effectively, and he was able to sleep on and off (as was I in the chair---I did not even hear the attendant come in with his dinner tray!).
The nurses shift changed as he was waiting for the second unit. About 8:30-9:00 p.m. it finally came, and he was ready for it. It takes several hours to drip into his port.
Unfortunately, Jim had quite an elevated heart rate throughout the night, in fact up until 5:00 a.m. this morning. It was high enough to warrant an EKG late at night and close watching. I spoke with his doctor this morning, and Jim will remain at Sibley until they figure out exactly what is happening and he is more comfortable. He now is experiencing enough pain as to make it uncomfortable again to be in bed.
That is the current status. I'm sure as the day progresses, things will change, meds will get tweaked, and hopefully his condition will improve. Please accept all our thanks, and I'll hopefully post an update soon.
Posted: Wednesday 15th September 2004, 6:23 AM
Beth: Saturday, Sept. 11, 4:15 p.m.
In all likelihood, Jim will receive two units of blood in a transfusion next Friday. Yesterday, he had both an oncologist and radiologist appointment, which by the end of the day, had drained him of any remaining strength. His crit remains precariously low, and at almost the 26 mark, does not allow for much "wiggle room." If it does not improve by his next appointment Friday, he will be at Sibley Hospital receiving the two units. The low crit means he is severely anemic and thus has absolutely no energy and is exhausted all of the time.
In addition, his medication has been increased to take care of the severe bone pain that he now is experiencing in his rib cage due to the metastatic cancer.
He lost four more pounds....not unexpected. However, his blood pressure was good at 126/72...still low, but better than it has been.
Both the radiologist and oncologist will discuss a radiation treatment to Jim's ribs if the pain persists at the current level or gets worse. We still are waiting for the original radiation to kick in and hopefully the good byproduct of chemotherapy should be showing up by next week Friday.
Jim also is suffering from pressure sores that he is being treated for. He cannot sleep lying down in bed for long and so remains in his new chair much of the time. This, along with other factors, has made for uncomfortable pressure points on his body. We will be having a visiting nurse come to the house next week to help us out and relieve us of some of the work involved in treating them.
It's a rough situation, and Jim is doing his best to cope as well as he can. A weekend visit with a favorite cousin from California has been wonderful for us and has allowed us to talk about and share our thoughts and feelings.
Along these same lines, how can we ever put into words what we feel about all of your calls and caring words? We just cannot say it as effectively as we feel it. Your empathy and showering us with love has been incredible and certainly keeps me going. To all of you, I raise my arms and embrace you. To all of you, my thanks and love. We keep you all close to us and nearby and get our daily strength from your constant attention. We love and need you.
Posted: Saturday 11th September 2004, 1:25 PM
Beth 11:45 p.m. Friday evening
A physically- and emotionally-demanding Thursday took its toll on Jim, so much so that Thursday evening he was strongly considering not showing up Friday for his chemotherapy appointment at 1:00 p.m. Several "secondary" cognitive and physical events were going on, including a very uncomfortable urinary tract infection that now is being treated. Jim also is experiencing periodic inability to cough up the mucous that develops deep within his lungs as a result of the cancer. When this occurs, his anxiety mounts, and his cough sounds like a terrible bark that does not clear his chest as would a good cleansing cough. To help Jim with this condition, the doctor had a nebulizer delivered to the house. This piece of equipment delivers "steamed" medication deep into Jim's lungs when he breathes in and out through a mouthpiece. It took some getting used to (especially putting it together after reading the manual and watching the video in French and Spanish before we hit the English version)!!! Jim is to use it four times a day with the medication. He often gets quite shakey afterward.
In addition, no sleep Thursday night due to his physical uncomfortableness, anxiety, and not-unexpected depression meant that Jim walked the floor until he was exhausted Friday morning. BUT, WE WERE AT CHEMO AT 1:00 SHARP and brought muffins for all to eat! Jim's new port in his chest was used for the first time to deliver the chemo. He sat back in a lounge chair, closed his eyes, and waited for the treatment to begin. A new portable CD/radio player was bought especially for chemotherapy days along with some good CDs (I brought his favorite Josh Grobin CD holder but without the CD!!) Ugh! Regardless, it still made for a better day as Jim listened to the radio portion and the one "Bottecelli" CD we did have. Once Jim's chemo started, I went to Panera for our "picnic" lunch. If it were not for the cancer and the chemo, I would say it was wonderful sitting high up on Wisconsin Ave. having take-out salad, sandwiches, and soda together. In fact, I did say that to him. How neat it was to start the holiday weekend early together and having lunch. He nodded, so I knew he heard me through the earphones and the sandwich. Three and one-half hours later we left. He even had a smile on his face (a little). What a change from the first round of chemo where even his ankles were used to deliver the treatment.
Other "good" news is that his hematocrit was 26.2, up from last week (though still not great), his weight---well he lost 10 pounds===but no more, so that's good, too, and probably means more trips to the store for Edy's Grand ice cream. And, his blood pressure was even up to 101/67. Better than last week. All that will go in the plus column.
He's pretty exhausted and has new sleeping pills that hopefully will work through the night. We'll see. So, that's about it for now. We go back to the oncologist next Friday for the usual blood tests, etc. Me thinks this will become a weekly visit....at least that is how it appears.
And, again, your cards, notes, e-mails, calls, thoughts, meals, goodies, "pooh-ladened" cards and envelopes, get-well wishes from Tokyo, and prayers have taken us this far. You are laying the road ahead and have put the "brights" on to light the way! Many thanks...we're filled with your positive energies.
Love, Beth and Jim
Posted: Friday 3rd September 2004, 9:03 PM
W.O.W!!! All of your good vibes must have come "through" this weekend as Jim's numbers were up this morning (Monday) at the doctor's office, albeit not by much, but I was ecstatic, nevertheless, and if he had a bit more energy, Jim would have been, too. Today's readings were 25.9 for the crit (one whole point up from Friday!!!) and 97/63 blood pressure, up from Friday's 80/60 (I must have been especially annoying this morning if his blood pressure was up by that much. : ) The numbers are going in the right direction (up), and that is all important. Jim even gained several pounds over a weekend of eating steak, potatoes, ice cream (Edy's Grand vanilla, thanks to son Andy and girlfriend Alena), pretzels, cookies, waffles, Ensure Plus, in addition to "homemade" favorites). Jim balked when I prepared Lean Cuisines but dove in when I cooked meatloaf and filets. Don't get me wrong. He's not "pigging out" and only eats very small amounts when he does eat. Last night (Sunday) he even wondered where his midnight snack of ice cream was and accused me of hoping he had forgotten that I had promised him one! He's still quite exhausted and can barely stay awake. But, as the doctor says, we must be doing something right.
Also, Jim now has a "regulation" army haircut to stem the clumps of hair that are falling out because of the chemo. I feel I should almost salute him! Saturday, I took out our Wahl hair clippers and gave him a VERY short cut. Even though the hair still comes out, it is doing so in "shorter" clumps. Besides, when I used to cut his hair when we were first married, he always did complain that I left "bald" spots!
Anyway, all this is to say ''many thanks to you all for the hard work you are doing on our behalf and for pulling us along in a positive mindset. Your positive energies are terrific and certainly are making their way to us. Jim's chemo still is on for this Friday at 1:00 and will take most of the afternoon to be dripped into his port. I suspect he shall be quite exhausted after the ordeal and hopefully will sleep the weekend.
Again, many, many thanks, and we just love you all.
Beth and Jim
Posted: Monday 30th August 2004, 10:27 AM
A low hematocrit (red blood cell count--good is 37-40, Jim's was 24.9)and severely low blood pressure (good is 120/80, Jim's was 80/60) turned an otherwise 30-minute visit Friday afternoon at the oncologist's office to get a shot and have a consultation as to the next chemo treatment into a three-hour stay. Jim received two bags of a saline drip directly in his new port in his chest in attempt to raise his blood pressure (it did by two points!!). His low pressure certainly accounts for his spells of instability, among other things. The "T" (transfusion) word also was whispered, though only in passing. Jim's low crit numbers normally would have necessitated one, but we are waiting till Monday morning when he goes back to the doctor's to see if anything has improved before we discuss the "T." We are hoping only for the best.
Jim's next chemotherapy session is scheduled for this coming Friday afternoon. He is exhausted, as is expected and, because of his 11-pound weight loss recently, has been told to "rest," "rest," "rest," and "eat," "eat," "eat" anything that tastes good and is caloric!!! Don't worry about salt, calories, or anything. Just eat! OK, well that's what it'll be this weekend and for the long-term. We will stem the weight loss, raise the good red blood cell count, increase his blood pressure to an acceptable level, and get him on a better path both physically and mentally... with your help, healing words, and wonderful thoughts. You all are making this effort into a reality for us, and we thank you over and over. Jim is a trooper, and it is impossible to put into words how I feel about this whole thing and my wonderful Pooh. Of course, I still "micro-manage" everything (his favorite phrase for me for the last gazillion years, and it drives him crazy, which is good, I think). As long as it still drives him crazy that shows me that he still has his "spirit." I will do everything in my power to drive the Pooh as crazy as ever!!! I promise!!! : )
Again, thank you all for your loving nature.
Much love, Beth and Jim
Posted: Friday 27th August 2004, 4:22 PM
In by 1:00 p.m., out by 6:00 p.m.! All went well today, and Jim is resting comfortably at home with the new port in his upper chest. The surgeon said it went without a hitch. I understand Jim was even talking to the surgical staff as they were doing the procedure! Graham crackers and ginger ale topped off the day as he waited in recovery. Yum!@
He's pretty exhausted, not having slept at all the night before. Friday it's off to the oncologist to find out the timing of the next round of chemo (and for Jim to get a shot to boost the good red blood cells).
What can I say about your postings? The love and caring that flow from each and every one of them have to impart some sort of healing energy force. They all do! We love them.
And, thank you, shwanky Jen, for your wonderful surprise visit after surgery. A smiling, loving face rounded the curtain, and all was well!
Again, our thanks and love to all of you for all your thoughts and caring.
Love, Beth and Jim
Posted: Wednesday 25th August 2004, 5:20 PM
Jim's procedure at Sibley to get the port implanted has been postponed until Wednesday afternoon, which means he has a couple of more days to rest and regain some strength. At least that's how best to look at it!
Posted: Monday 23rd August 2004, 7:26 AM
Dearest Friends and Family: Jim and I are overwhelmed by all that you've done for and said to us. You give us strength and hope just when we think we're running out. You are our lights of love and joy and hope. The past two weeks have been incredible. We are still reeling from the effects of the diagnosis. On Friday, Aug. 20, Jim finished 10 days of radiation, which began Monday, Aug. 6, two days after he came home from Sibley. That same week, he had his first round of chemotherapy, which proved to be quite difficult.
After having been in the hospital the previous week, his veins were pretty well tapped out, and they had to go to the veins in his ankles to put the third and last bag of chemicals into his body (both arms already had been used). So far, Jim has "tolerated" all the new chemicals that have been pumped into his body fairly well. He is heavily medicated for his pain, though many nights he still has been up all night with pain. We are told that things should improve within the next two weeks when the radiation treatment should take effect.
Today, Monday, Aug. 23, Jim will go to Sibley to have a port put into this chest. This implanted device will allow the doctors to readily give chemo and draw blood without having to stick him with a needle each time. Next week, Jim will have another round of chemo. The following week, we meet with the radiologist to discuss possible further radiation.
Our goal is to see you all very, very soon as soon as Jim regains some strength and is "weaned" off of some of his medications. We miss you all and thank you from the bottom of our hearts for all your prayers, thoughts, and efforts. We love you. Beth
Posted: Monday 23rd August 2004, 3:31 AM