I think this came from Geneva or some other family member. Sadly I didn't write the name down and now it has slipped away.
Wish Heaven had a phone so I could hear your voice again.
I thought of u today, but that is nothing new.
I thought about u yesterday, & days before that too.
I think of u in silence, I often speak your name.
All I have are memories and a picture in a frame.
Your memory is a keepsake, from which I'll never part.
God has u in his arms, I have u in my heart!
September 13th ,2000
September 25th, 2000
About noon Friday M. D. Anderson Cancer Center called and accepted Sue for evaluation and treatment. Sue now has an M.D. Anderson reference number that will allow us to get some discounts on airfares, hotels and such. One of M.D. Anderson's rules is that the patient must have X-Rays and CAT Scans in their hand at the time they meet with the Doctor's or the appointment will be canceled. The local Doctors, trying to help out, had made arrangements to ship those items to M. D. Anderson so we had to run around town gathering up reports. We now have the X-Rays, CAT Scans and reports to hand carry. The new transmission in Sue's car decided to act up (wouldn't you know it) so Friday was busy. Sue's first appointment is Monday October 2nd and they have estimated the whole evaluation process will take three to five days. We will be staying in the Holiday Inn about four blocks away because the hotel across the street (operated by M.D. Anderson) stays booked about two weeks in advance. At the end of the evaluation the Doctors will tell us what treatments will be required. I will have a laptop with me and will keep in touch.
Thanks to all of you for your kindness and compassion. This has certainly been a trying time for myself, Sue and our family.
Well, it has been another rollercoaster day of bad news and good news. The first "gut feel" estimate by the Doctor is that Sue's carcinoma is not operable. The cancer has spread outside the lung into the midline of the body cavity and involves multiple layers of tissue including the lymph glands. However, they have already begun to talk about chemotherapy, radiation therapy and are beginning to build a plan. By end of today, Sue has had the first consultation with her Doctor, blood work, another round of chest X-rays and an EKG. Still to be done is a brain CAT scan, chest CAT scan, Bone scan, Mammogram, Echocardiogram, complete Pulmonary Function study and a consultation with Thoracic Radiation group. After all the tests and consultations are done then the team of Doctor's will give us the official prognosis and plan of action. The slides from her biopsy did not show up at this end so M.D. Anderson is contacting the folks in Bartlesville to find out where they are. We certainly don't want to have to do the biopsy again.
You can probably tell we were pretty sad at the outcome. Deep down we had hoped it could be resolved with surgery and chemo and/or radiation.
Just when we thought things couldn't get worse they did. The M.D. Anderson CAT Scan found two more places in Sue's right lung where the cancer has metastasized (spread to). It apparently has happened in the past month or perhaps was not spotted in the first CAT Scan back in Bartlesville. So, Sue has been identified as a stage 4 cancer patient which is about as bad as it gets. Radiation Therapy is out for the moment because the cancer is in three places and it's too advanced for surgery. There are two clinical trials (experimental drugs) in progress that would be used in conjunction with Chemotherapy but it is not clear if she can participate since she also has a heart problem that requires her to take a blood thinner. We will find out first thing in the morning if either of the clinical trials can be used. One of the trials starts next Tuesday and takes five days to administer and is administered every three weeks. The other start date is not clear, only take one or two days to administer and is administered every three weeks. If the other two places in the lung can be eliminated then Radiation Therapy can be used for the primary cancer. Regardless of which protocol is used, she will have to have a CAT Scan at M.D. Anderson every three weeks as well as administration of the protocol medications.
I'll keep you posted.
We finally are seeing some daylight. Sue got approval today to go on the most preferred of the two proposed clinical trials. She was very fortunate because there were only five slots left nation wide and four other hospitals vying for the slots. The trial will deliver a "standard" Chemotherapy protocol with an added drug called Squalamine Lactate which reduces the size of blood vessels in the tumor thereby stopping the spread and growth. The spread has to be brought under control and the size reduced before they can start radiation on the larger mass. We spent the day with a "Research" Nurse going over "consent forms", consultations regarding delivery of the drugs, what the side effects are, how to care for the "long line catheter" (inserted where your arm bends), what Sue's diet should be, how to contact M.D. Anderson Physicians in the event of an emergency, etc. There is a lot to learn and not much time to get it done. We will be attending two classes tomorrow to learn how to take care of the "long line catheter" then Sue will have some blood work, an EKG and they will insert the "long line catheter".
This was a busy week. Tuesday morning at 8:30 A.M. Sue had a surgical procedure to insert a catheter in the left side of her chest. Although she was extremely anxious about the procedure and her heart problem is a constant concern for her, it went well. We had another meeting with the Research Nurse to get last minute instructions for the Wednesday chemotherapy procedure and some premedication prescriptions filled. In the afternoon Sue and I got class number two out of the way so we could get supplies and prescriptions to maintain the catheter. Since the catheter is subject to infection and is installed in a vein there are daily and weekly procedures to keep it clear and sterile. Tuesday night Sue started her medications for the chemotherapy that was to be done Wednesday morning. Wednesday morning at 7:30 A.M. Sue started her chemotherapy session and it was a really long, long day. The first round of chemicals ran from 7:30 A.M. to about 3:00 P.M. and the premedications pretty well put Sue out. Late in the afternoon a bag with the Squalamine drug and a portable pump was connected so she could get up and move around. From late in the afternoon to about 9:30 P.M. there were periodic checks of her vital signs and blood tests. We were back at the hotel about 10:30 P.M. About 2:30 A.M. Thursday the first nausea side effect of the chemotherapy set in and was controlled by medications. The rest of Thursday was spent getting vitals checked and blood drawn. Friday morning things got worse. The nausea was back, joint aches caused by chemotherapy started and she was dizzy and light headed. The light headedness soon worked into getting faint to the point of not being able to sit up. The Research Nurse called the Doctor who told us to take her to the emergency room and I managed to get her there shortly after. The emergency room Doctors found her blood pressure had dropped to 50 over 73. It took 3 liters of IV to get her pressure back up to an acceptable level and was after 9:00 P.M. before we got back to the hotel. Some of these things are just the bad things that happen with chemotherapy and we will have to learn how to deal with them. In the future she will have to learn how to get ahead of the nausea and joint aches and to load up on liquids prior to, and following the chemotherapy. Today (Saturday) has been a little better. No extended periods of nausea but the chemotherapy tiredness seems to have set in and the joint aches are still here. Monday will be an EKG, visit with the Doctor and blood work. She was originally scheduled to have some testing done on Tuesday and Wednesday as a part of the research project, but it is not clear if the illness on Friday that prevented the testing will nullify the results. If the research testing gets cancelled, we will head home Tuesday. The next big hitter will be the cycle two chemotherapy administration in about two weeks and the hair loss that happens in about the same time frame. Everyone we have talked to say that the hair loss is a "real shocker" when it happens.
Sue had another episode of low blood pressure early Sunday morning so we spent the day in the emergency room. She met with the Doctor and Research Nurse this morning who are at a loss to explain what is happening. She has not exhibited any of the symptoms since yesterday evening but the Doctor wants her to stay close by for another 24 hours just in case. If the low blood pressure should recur, she will have to be hospitalized to sort out the problem. The Squalamine portable pump has been disconnected so Sue is grateful for that. Sue got her EKG and research blood work done early this morning and all the results are good. Interestingly, she got so many blood tests over the past few days that the research blood test regimen (that we were concerned about being nullified) was satisfied. So, we will be heading heading home in the morning unless the M.D. Doctors should call and change our minds. We will do it in two hops this time, to Dallas the first day and on into Bartlesville the next. Sue will start the next cycle of testing and chemotherapy Monday November 6th.
I really appreciate the prayers and support from everyone. We couldn't do this without you.
Well, I have really been remiss in sending out an update on Sue's condition.
We were going to head for home last Tuesday morning October 24th but Sue had another blood pressure drop and spent most of the day in the emergency room getting IV's. The Doctors did more tests but still think it was a matter of getting behind the curve with her intake of liquids. They told us we could leave the hospital but to stay close by for 24 hours. We were so anxious to get back home that the definition of "close by" was to stay in Plano Texas (outside of Dallas) with Sue's brother. Sue drank lots of liquids and thankfully didn't have any more problems. We made the trip from Plano to Bartlesville on Wednesday arriving home late in the afternoon. Thursday we had a problem with her catheter getting stopped up but that was corrected at one of the local Doctors office. We have met with one of the local Oncology Doctors at Oklahoma Oncology who will be doing Sue's follow up when she is not in Houston and would handle any emergencies should they arise. We have both appreciated being back home again and have started to catch up on all the things that tend to get behind when you are away. The joint pains have pretty much gone and the nausea has subsided quite a lot. Her scalp has been hurting a lot since Monday the 30th and a lock of hair came out Wednesday. We think the painful scalp is a symptom of a complete hair loss that will occur shortly. As of Saturday the hair loss has increased. We had another learning experience with the chemo. Sue and the cat were playing and Sue ended up with a single puncture on her arm. The next day it was enflamed and infected. The arm is completely healed now but it took a trip to the Doctor and a prescription for penicillin to get the job done. Infection, and catching things like colds is a substantial risk when chemo drives the immune system down. Sue left for Houston Sunday and will begin the "cycle 2" process Monday. Monday, blood tests, x-rays, etc. Tuesday, meet with the Doctors. Wednesday, start the chemo infusion and connect up the squalamine. The squalamine will be infused over a five day period with a portable pump. Hopefully she will not have a drop in blood pressure like the ones that kept her in the emergency room last time. Monday the pump comes off, Tuesday, stay close by for monitoring and Wednesday she will fly home. Sue has a cousin that lives about 45 minutes north of Houston who will be staying with her during treatment. We are certainly thankful for that. Cycle number three starts on Monday November 27th and runs through December 5th. This will be the week Doctors will decide if the tumors are staying the same, getting larger or in remission. If they are growing or spreading, a change in treatment will probably be ordered. Cycle number four starts December 18th and runs through December 26th.
Thanks for your support folks, it's really appreciated by Sue and I.
Sue left last Sunday November 5th for her chemotherapy treatment in Houston. Her blood work and tests done Monday were all good for the start of cycle 2 chemotherapy on Wednesday. She had a chest x-ray done that indicated there were not any large or spreading masses in addition to the ones she had earlier. That is cautiously good news considering that x-rays are not nearly as accurate as Cat Scans. She had her chemotherapy Wednesday and was doing very well until 3:00A.M. Saturday morning when she ended up in the emergency room again with low blood pressure. She went longer before having problems this time so that is a little good news. Perhaps it's a sign that she is learning more about how to deal with all the side effects. She has lost all of her hair now and says she has drank enough Gatorade to become one. This weekend has been especially long with bouts of depression and the pain in her feet has worsened. The Squalamine and portable pump will come of Monday and if all goes well she will be able to come home Wednesday. We are all anxious to have our Mom, Grandma, Wife, Daughter, Sister and friend back home. Her next cycle will begin November 29th.
Thanks to all of you for your support, all the wonderful cards, the calls and prayers.
Last Sunday November 26th we went to Houston for Sue's in depth pre-chemotherapy tests and to find out if the current chemicals are doing any good. As we thought, the Doctors took her off the investigational drug Squalamine saying that it was just too toxic for her system and there was a risk of heart attack and/or stroke when her blood pressure got so low. There didn't appear to be any growth of the tumors so we didn't lose any ground this time and to us that is good news. One of the Radiologist cast some doubt on the original thought that the two smaller tumors in her lung are really active and as a result a PET scan will be done sometime in early December (prior to her next chemotherapy). The outcome of this test will radically change the treatment. If the tumors are benign, the cancer is not in the blood stream and can be treated with heavy doses of radiation. This option would be an attempt to "go for the cure". If the tumors are active, then she will get both radiation and chemotherapy. Of course the radiation has it's own set of side effects. We won't get our hopes up too soon. Sue came back Friday night and has spent most of the weekend laying on the couch with nausea, dizziness and the usual aches and pains. The nausea and psychological part seems to be worse this time and we both keep hoping the side effect symptoms will level out. With all the options piling up, there is a very strong possibility that we will spend the Christmas holidays in Houston.
We left last Sunday December 17th for Houston to hear the results of Sue's PET (Positron Emission Tomography) scan and to find out what the new plan of attack would be for treatment. The results were either disappointing or good. We have yet to make up our mind. The two smaller masses did not "light up" as a tumor would (good news), but the Doctors thought perhaps they are so small they might not "light up" (questionable news). As a result, the Doctors said they must give Sue the benefit of a doubt and say that the cancer is not in the blood stream and plan the treatment accordingly. The fact that the cancer is not in the blood stream would raise her survivability to about 33% (I heard one in three and Sue heard 20 to 25%). So, the plan was to give her radiation therapy five days a week for about six weeks and get chemotherapy one time a week as well. The chemotherapy dosage would be adjusted downward to accommodate the increased frequency of the treatment. The plan was to go back down to Houston the first week in January to begin. We flew back Tuesday night after Sue got her tattoo's for alignment accuracy of the radiation, body marks (targets) and body mold (to keep her physically lined up during radiation).
Now for the interesting part. This news was so startling that we are still very cautiously considering it. Sue's radiation Doctor from MD Anderson called yesterday shortly before noon and said something similar to; "there was a meeting of 20 to 25 Doctors last night and your case was the subject". "Our surgeons have examined your case and think they might be able to get the whole tumor surgically". "We want you to come back down for some extensive testing". Needless to say, Sue cried. We should get the schedule Friday. We would love to get very excited but afraid to get our hopes up too high. But, for those of you that have been lighting candles for us and saying prayers, keep up the good work. It seems to be working.