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15 January 2004 Liddy took her final steps on her journey with Ewing’s sarcoma today at 11:15 AM. No more pain. No more labored breathing. No more trembling hands and wobbliness. No more auras. She is at rest and at peace. A copy of the obituary that will be printed in the local newspaper follows: Shriver, Elizabeth: Elizabeth Anne Marie Shriver, known to her family and friends as “Liddy”, died on Jan. 15, 2004 after a 22-month battle with Ewing’s sarcoma. She was born November 12, 1966 in East Los Angeles, CA to Bruce and Beverly Shriver, who live in Ossining, NY. Liddy is survived by her husband Tom Swartz, her parents, and her three brothers Bruce, Jr., Mark, Matthew and their families. Liddy resided with Tom in Jersey City, NJ. She was a graduate of SUNY/Stony Brook (BS), Brown University (MS) and NYU (PhD). She worked at Lucent’s Bell Labs in New Jersey after graduating from NYU. Liddy was an avid cyclist and during her bout with cancer she inspired many patients and caregivers with her online journal and her bike tours. Visiting will be on Sunday (Jan. 18) from 2-4 PM and from 6-9 PM at the Edward Carter Funeral Home, 41 Grand St, Croton-on-Hudson, NY (914) 737-0900. A Funeral Mass will be held at 10:30 AM on Monday (Jan. 19) at Holy Name of Mary Church, 110 Grand Street, Croton-on-Hudson, NY. Later this spring, a graveside ceremony will be held at St. Augustine Cemetery in Ossining, NY and a memorial service will take place at Liberty State Park in New Jersey, where Liddy and Tom frequently biked. In lieu of flowers, the family requests that you make a donation to the Liddy Shriver Sarcoma Initiative, a non-profit charitable entity for those dealing with sarcoma. Your check must be made out to “FJC” and the memo line must read “Liddy Shriver Sarcoma Initiative”. Please send the check to FJC, 520 Eight Avenue, 20th Floor, New York, NY 10018.
Peace,
Bruce, Bev and Tom
26 December 2003 Liddy is taking several medications. Some are for pain caused by the tumors growing in and external to her lungs. Some are to reduce the swelling of the tumors in her brain and thus the side effects these tumors can cause. Some are to make her less anxious. In case the pain becomes quite intense, she also takes a “break through” medication. Unfortunately, this happened on the 23rd and it took hours to adjust her medications to get her back “on top of the pain”. She gets apprehensive and anxious from time to time and doesn’t like to be left alone. During these times, she likes someone to read to her. The sound of someone’s voice seems to calm her and make her more relaxed. She finds it relaxing to work with her “beading”, making necklaces and such for family and friends and she also finds it relaxing to have soothing music playing softly in the background. She is having trouble finding words and making completely formulated sentences; even answering simple questions—whether they are from a visitor, via e-mail, or on the phone—becomes a source of frustration. If you call or write to her, please don’t ask questions like, “How are you feeling” or “What is your next project?” or “Where are you going on your next bike ride?” Use declarative sentences, rather than questions. In your own words, say something like, “Liddy, I’m so glad to talk with you. I enjoy your company and I’m here to be with you. I’d like to read something to you.” Don’t be disappointed if she says, “Not right now.” She knows you wanted to show her some special love and attention. But, just knowing you wanted to do this is sufficient. She is often very sensitive to touch, particularly on her back. She can be sensitive to movement, particularly the movement of her mattress and/or bed. And, sometimes she finds it difficult to deal normal household noise, such as people engaged in conversation around the dinner table. The shakiness in her writing has reappeared as has the low volume level of her speech. It takes her a while each morning to become acclimated to her surrounding and to find a position to get comfortable. She started hospice care in our home about two weeks ago. The social worker, the visiting nurse, and the lay minister have each, in their own way, been of help to all of us with their sensitive, caring visits. Because Liddy has bounced back so many times from such perilous places in this journey with her cancer and because, when she feels up to it, she is still actively involved in conversation, asking questions, working on projects (such as her recipe book project), we hope and pray that all of this will pass. But, right now, we need your prayers for her, Tom, and our family. We are in your debt for these prayers. We take each day, for what it is, a gift.
5 December 2004 We (Liddy, Tom, Bev and I) met with Liddy’s oncologist yesterday to learn the news of her latest scans. The results were not good. In fact, the results were much worse that anything we expected. Given how the whole brain radiation had an initial effect on the tumors in her brain and how the lung radiation had an initial effect on the large tumor in her left lung, we had high hopes that it would have an effect on the tumor external to her lungs in her abdomen. Unfortunately, it did not. Moreover, our use of the phrase “initial effect” is important because we learned that the effect was not long lasting. She now has more tumors in her lungs, some of which have grown dramatically in the past 4-weeks. She now has more tumors in her brain, all of which are growing. The tumor outside of her lungs is growing. This disease is relentless as it aggressively claims more of her body and mind. She has been extremely fatigued the last several weeks and has been in a lot of pain whenever she moves. She is on pain medications in an attempt to control the pain. She finds it difficult to walk and sit comfortably. She spends almost all of her time in her bed. Her daily vomiting seems to be under control due to the steroids she is taking to reduce the edema around the largest of the tumors in the occipital region of the brain. She is once again having problems finding words and putting sentences together and the shakiness in her writing has reappeared. Please keep her and our family in your prayers. We need them now more than ever.
16 October 2003 Anyone reading this page will recall how bleak things looked just six short weeks ago before Liddy began her two different radiation treatments (i.e., whole brain and the radiation targeted at the largest tumor in her lungs). We learned today the results of the first scans that she has had since completing her radiation treatments: the radiation actually had a significant impact! We also happen to believe that the prayers and good wishes that you have been offering on behalf of Liddy and our family have also made an impact. The tumor near her occipital lobe has shrunk by 20% and the two lesions in her frontal lobes and various small cortical lesions are “no longer apparent”. There was no evidence of new lesions or abnormal enhancements in the brain. Similarly, the large tumor in her left lung also appears to have stopped growing. We certainly hope these are permanent effects. However, the scans showed there are additional problem areas. The two larger lesions in her right lung, both of which had shrunk prior to her brain surgery, have now re-grown to their original size. Also, a lesion, which was first noticed in June located outside the lung near the diaphragm, is growing toward her left kidney. It is now quite large (approximately 10 cm). She will be meeting with the radiation oncologist on 27 October to determine if targeted radiation can be used for this tumor (and perhaps the other two in the lung as well). Additionally, her oncologist will decide whether or not she will recommend that Liddy have chemotherapy in conjunction with the radiation treatments (if they can be done). Again, we seek your prayers for Liddy and our family and we thank you for all of your efforts in the past. We are cautiously optimistic and hopeful.
7 October 2003 Liddy spent three weeks in the hospital and was discharged on 30 August 2003. She began a series of 15 whole brain radiation treatments on September 4th and, due to delays in the treatments caused by low blood counts, completed them on September 26th. She began a series of 14 radiation treatments to attack the large lung mass near her heart on September 16th. These treatments ended on October 3rd. She has made an amazing recovery so far and is feeling well and back on her bicycle again (which is, of course, a very good sign). Most of her symptoms have diminished somewhat (e.g., the frequent cough) and we are cautiously hopeful that the radiation treatments have done some real damage to both the metastases in her brain and the largest and most dangerous of the tumors in her lungs. She still uses oxygen (when not biking) and is on pain medications and an anti-seizer medication, which is standard after brain surgery. She will have the next set of CAT and MRI scans done on October 14th and we will meet with her oncologist on the 16th to learn how effective the radiation and her last chemotherapy treatments have been. We’ll explore what the possible next steps are after understanding the effectiveness of the radiation treatments. She and Tom left on the 3rd for a holiday to visit various friends in the New England area and to bike in Vermont. They are due back this Saturday. In the weeks after she was released from the hospital, we had a constant stream of relatives and friends come and visit her. We are so grateful that they could come and visit. Please pray for a successful outcome of the treatments and for our family.
3 September 2003 Within the next few days Liddy will begin whole brain radiation treatments to deal with the metastases in her brain. A few days later, she will begin a regime of radiation treatments using 3D conformal radiation techniques to target the large tumor mass in her lungs. The treatments will be scheduled every day except Saturday and Sunday. Tentatively, she will undergo 15 whole brain radiation treatments and 14 conformal radiation treatments. She will (probably) not be having chemotherapy during this time. The follow up scans to determine the effectiveness of the treatments will take place 4-5 weeks after the treatments have ended. Please pray that her cancer reacts to these treatments, which are focused on increasing her quality of life.
29 August 2003 When we said that Liddy’s cancer was relentless in the 26 August 2003 update, we should have said “relentless, extremely aggressive and unforgiving”. Yesterday morning Liddy had a MRI of her brain. It showed that in just two weeks the tumor near her occipital lobe had doubled in size and that there were new lesions near the surgical sites in both the left and right hemispheres. After our meeting with Dr. Keohan on the 25th, we thought the treatment plan could focus on the large tumor in her lungs and chemotherapy was immediately started. Given the rapid growth of tumors in her brain, Dr. Keohan is now recommending that she begin whole brain radiation, a particularly demanding form of treatment. We believe this recommendation will be confirmed when we visit the radiation oncologist next Tuesday. Again, we ask for your prayers and thoughts for Liddy and our entire family.
26 August 2003 As you know, Liddy’s cancer has been particularly resistant to all of the chemotherapy drugs that have been used against it and it has metastasized to her lungs and her brain. It is relentless. As painful as the 8-day chest tube process was, it did not work. She now has as much fluid (if not more) in her lung lining than was there before the procedure was done. This makes it increasingly difficult for her to breathe when walking. (Amazingly, she does not have this problem when biking.) The fluid build up is in response to presence of the tumor. When she is released from the hospital, it will be with a portable oxygen unit. She has referred pain in her shoulder from one of the lung tumors, which apparently is also compressing her laryngeal nerve, giving her a weak/soft voice.
We (Liddy, Tom, Bev and Bruce) met with her oncologist, Dr, Keohan, very late yesterday afternoon. We had many questions about various treatment plan options given where we are with this wretched disease. Each option takes a certain amount of time to determine if the cancer is responding to it or not. This typically involves two cycles of the treatments followed by CT scans, MRI scans, and/or X-rays that are contrasted with the base-line tests to determine the effectiveness of the particular option. Furthermore, each option comes along with a set of side-effects that can have a significant impact on her quality of life. Some side-effects are much more serious than others. Most of the options before her are physically, psychologically and emotionally demanding. Lastly, the outcomes of the options against her cancer are unknown, given the lack of history of the use of most of the options with adults with her Ewing’s sarcoma/PNET.
Time. Quality of life. Potential outcome. These difficult and complex considerations where immediately driven home when Dr. Keohan told us that we are dealing with months, not years, as Liddy’s life expectancy. Given such devastating news, we take life one day at a time, as the gift it is.
Liddy elected to begin chemotherapy last night with topotecan and cyclophosphamide (with appropriate pre- and post-medications) to attack the tumors in the lungs. If these drugs work, we will rejoice and give thanks. If not, some difficult decisions lie ahead. We ask for your prayers and thoughts for Liddy and our family to guide her and us through the quality of life and life expectancy issues.
Hopefully she will be released from the hospital either Thursday (the 28th) or Friday. Her ability to actually use any specific option after these drugs is limited by her general health, her blood counts, etc. Some of the options that would be considered are: harvesting stem cells 10 days after chemo is over in case she would undergo High Dose Therapy (HDT) using thiotepa, melphalan and etoposide; undergoing either whole brain radiation or stereotactic radiotherapy to treat: (a) the tumor near the occipital lobe (b) any potential material left behind during the neurosurgery, and (c) any micromets that might exist in her brain; using radiation and hyperthermia to deal with the lung metastases; using vaccine-based immunotherapy to deal with her sarcoma; and palliative care.
14 August 2003 Liddy was moved from the ICU to the Neurological Patient floor on Wednesday. She is showing some of the side effects of the operation such as swelling around the eyes. The X-rays showed a significant pleural effusion due to the large tumor in her lung (the accumulation of fluid in the pleural space). Her oncologist wanted to deal with this as quickly as possible and, in consultation with the pulmonary specialists at the hospital, ordered the insertion of a vacuum-assisted chest tube to drain the fluid. This was done just as the extensive electrical blackout hit the northeast and we (Tom, Bev and Bruce) were forced to leave the hospital shortly after the tube was inserted. She is experiencing both discomfort and pain from the tube. We checked on her several times by telephone. The oncologist believes the tube will be in for several days. She is currently using a “walker” and will enter a rehabilitation program as soon as the chest tube is taken out.
12 August 2003 After a year of posting disappointing updates, week after week, we finally have some good news to report. In fact, it’s very good news. So far, Liddy has come through the craniotomy with flying colors. Due to certain events that took place early this morning, the neurosurgeon moved her surgery up to 10:30 AM. At 3:15 PM he appeared in the waiting room to tell us that he had removed both tumors in the frontal lobes and that there were no complications. He told us that she was being taken for a CT scan to check for any hemorrhaging within the brain and would be in intensive care around 4:15 PM. When we went to see her, she not only knew everyone, but she spoke to everyone in complete sentences and made some jokes. Furthermore, she was free of headache, nausea, and could move both her right arm and leg (which she could not do toward the end of yesterday and this morning). Thank you so much for all of your wonderful notes of support and prayers. We believe they made a difference in the outcome. The doctors think that she may be able to come home in 7-8 days. After recovering, she’ll then be able to attack the tumors in her lungs. We’ll keep you posted on her progress in a few days and let you know when she’ll be able to receive visitors.
11 August 2003 Early Sunday morning (10 August 2003), a brain scan revealed Liddy’s cancer has metastasized to her brain. Tomorrow (12 August 2003) she will have an operation (a craniotomy) in which the neurosurgeon will attempt to remove the two largest tumors. This is a serious operation which is scheduled to begin at 2 PM and will last anywhere from 4 to 8 hours, depending in whether or not he can remove both tumors in one surgical sitting. We will update you on the outcome of the surgery sometime Wednesday morning. Here is some background on these events. Bev and I were with Liddy all day last Monday. We sorted through a few hundred photos to select those for posting on the tour log for the Danish Bike Tour. She seemed fine. On Tuesday, she began to experience some bouts of nausea and headache (which increased during coughing and movement). Both the nausea and the headaches increased during the week. We were with her and Tom on Friday before her chemo treatment to meet with her oncologist to discuss a number of treatment options that we had researched to deal with the lung metastases. She reported some disorientation and pain in the upper back in addition to the nausea and headache at this meeting. Her oncologist scheduled a brain scan for Monday morning. On Saturday, however, things got a bit worse and her oncologist suggested in a phone consultation that she go to the ER at the hospital. Bruce met her and Tom there about 8 PM. Bev was babysitting two of our grandchildren, Isabel and Miles. The attending ER physician had a brain scan (MRI) done around 11 PM. Around 1:30 AM (Sunday), we were told she had two metastasized nodules, one in each hemisphere. She was immediately admitted into the NICU (neurological intensive care unit) in the hospital. Yesterday (Sunday) we were with her and Tom at the hospital and learned the situation is quite serious. There are actually three tumors (not two “nodules”): one in the left frontal lobe, one in the right frontal lobe and one near the occipital lobe. Both of the frontal tumors are large. We had a number of conversations with physicians throughout the day yesterday and today. They have no idea how the tumor has gotten so large without the pronounced brain tumor symptoms being present months ago. They are quite concerned about increased intracranial pressure and are giving her drugs to reduce it. She is on pain medication and “drifts in and out” of sleep much of the day. She had another MRI that included the gathering of stereotactic data to produce precise 3D position information about the tumor locations (for a potential surgery). This morning (11 August 2003), Liddy, Tom and we met with her oncologist at 8 AM. After hearing what she said about the neurosurgeon’s analysis, Liddy decided to undergo the operation. She is, as you’ve now come to know, a real fighter. Throughout the day she had some additional tests (an X-Ray and a test to evaluate pulmonary function and fluid in the lungs). We waited six and a half very, very long hours before the neurosurgeon met with us and explained the operation, and showed us the MRI images of the tumors. The neurosurgeon believes the operation will relieve the terrible headaches and nausea she is experiencing, and hopes the operation will have minimal impact on other functionality, such as cognitive processes, motor function and speech. Furthermore, if the operation goes well, she could potentially be home in 7-8 days. The hours were long because we saw her condition deteriorate through the day as she went from sluggish responses to non-responsive and faded in and out of a “light sleep state”. Miraculously, she did a turnaround when the neurosurgeon came into the room and by the time Bruce, Sarah, Matthew and Karen came to visit, she was knew them by name and even made a few jokes. This is a very serious operation. She and the family need all of the prayers they can get. Furthermore we do not know yet how and when the treatments for the lung metastases will proceed and how the third brain tumor will be dealt with.
Please consider reading Liddy's Health Journal.
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