CAROL ANN BALLARD’S STORY
Carol was diagnosed with Stage IV ovarian cancer on January 17th, 2000 after suffering from abdominal bloating, shortness of breath, chest pain, and weight gain for approximately one year. Her internal medicine doctor thought she was vain and simply gaining weight. She told Carol that she was too young and healthy to worry about ovarian cancer. Carol’s gynecologist gave her a pap smear and no other tests. Finally, Carol’s husband, Ben Ballard, sent Carol to a cardiologist because of her shortness of breath. He gave Carol all the tests for cardiovascular disease, including an angiogram, but he never gave her a simple chest x-ray that would have shown the accumulation of fluid in her pleura. It was at Ben’s insistence that he sent her for a chest x-ray in early January2000. That is what finally led to the diagnosis. For seventeen months after her debulking surgery in the end of January 2000, Carol wrote to her family and friends on a regular basis. What follows are the e-mails that she sent. Please be advised that these emails are exactly what Carol wrote and have been in no way altered; at times they are graphic and detailed.
February 3, 2000
I would like very much to thank you all for the flowers, cards and gifts you sent my way you will never know how much they helped to get me to this place. My love goes out to you all. I was able to spend the day in my own home today and I can’t tell you all how wonderful that has been. I know that I am now on the road to recovery. It has been a very trying time but with your love and prayers I have gotten this far for which I am truly grateful. For all of those who have offered help and assistance we thank you. And who knows one of these days I may need to call on you. Right now my husband Ben is taking excellent care of me and my daughter Janine, who lives here in San Jose, continues to be the angel she always was. My daughters Carrie and Denise will soon fly back to San Jose when I go to get my hair cut off. It is going to be a real family affair with my other two little angels. With each day I know I will improve so on occasion I will keep you updated. Once again, thank you to each and every one of you.
All my love, hugs and kisses. Carol :O)
February 24, 2000
Dear Family & Friends,
Just wanted to give you a little update. Currently my white blood count is down very low they are trying to get it back up in a hurry so that I can get the second chemo treatment next Tuesday. To get it back up I must get a series of three shots. I had one yesterday, one today and another tomorrow. Hopefully this will do the trick. Of course the shots have side effects of nausea and extreme headaches. So I am back on the double dose of painkillers. Since the blood count is down I cannot be around anyone for fear of infection. My daughter Janine wants to come and visit and I can’t even see her right now. It is sorta like living in a bubble. This morning Ben cut all my hair off. I currently look like GI Jane. I was crying at the start but knew it had to be done as my hair was falling out in clumps all over the place. Ben did a wonderful job and was so gentle the trauma seemed to float away. I don’t know what I would do without him. For someone who is new to all this I can tell you I am overwhelmed at the medications one has to take. I have never been a pill taker except for vitamins so to down all these different ones is very hard to do. I had no idea. I certainly have a new understanding of what cancer patients go through and I keep trying to tell myself if they can make it so can I. My heart especially goes out to the children I really don’t know how they make it. All I can say is that if any of you know a cancer survivor give them a hug because they deserve it I know I will from now on. I never in my life spent one moment of thinking that I could get cancer there was none in my family, my mother is 87 and healthy and I just thought I would follow in her footsteps but the good Lord had other plans for me. I am sure there is a lesson in here somewhere. Once again my continued thanks for all your cards and greetings they are very much appreciated.
Sincerely with love, Carol
March 11, 2000
Well, here I am again just wanted to let you know that I am doing well. I have been put on a new drug called Procrit which helps to bring my white blood count up and because of that I have been able to feel much better the last couple of days. Ben and I actually got out in the sunshine this morning and went for a little walk it was very refreshing to say the least after all the rain we have been having. I am also looking forward to having my daughters Carrie and Denise come to visit from Idaho next week. We will be going to San Luis Obispo for a few days of family fun. If the weather man holds out maybe we will even have some sunshine. My next chemo treatment is March 21st this will be the third one so I am half way there. Once again I would like to thank all of you for your continued encouragement and prayers.
Love ya all, Carol
April 13, 2000
Dear Family & Friends,
Well, I just completed my 4th chemo treatment. I won’t kid you this is not fun. My three daughters and Ben were there with me this time. Denise had never seen how the process works and she was quite taken back to see so many people. Since I am in there for 5 to 6 hours you get a real feel of how awful this cancer stuff is. Some people come in for short stays and some for a little longer. I started asking the nurse just what kind of cancer some of them had and it would blow you away. One young man with testicular cancer, one young girl with leukemia, another elderly lady with breast cancer and then still another with lymphoma. It saddens your heart to see them walk in and out on a regular basis. It really makes you think about all those times you worry about such unimportant things in life never knowing what pain and suffering is going on in other places. Gives you a new look at what life is all about. The doctor has told me that I will need to have a CAT scan from my neck to my pelvis and a chest x-ray before my next chemo treatment so they can take a check to see how I am doing. This will be done on April 25th. I’ll be keeping my fingers crossed until we know the results. I have good days and bad days and believe me without painkillers, which I must take every 8 hours I would not be able to sit here and send out messages. It is a real struggle at times no question about it. If you let yourself think about it you can get really down. Family and friends help so much and you find yourself really reading the messages in those greeting cards and taking in every word. So that is where I am right now. Only 2 more chemo treatments to go and then comes the surgery where they have to go back in and take another look. This will possible happen 3 weeks after the last chemo treatment not quite sure about that. Once again, thank you for all your prayers they are so much appreciated.
Love you all, Carol
May 3, 2000
Dear Family & Friends,
Guess I have some good news and some not so good news this time. I just completed my 5th chemo treatment and we got the results of the CT scan and the chest x-ray yesterday. The CT scan showed no new tumors growing which is good. However, the chest x-ray shows that there is more fluid around my right lung. I will be seeing the lung specialist on Monday with x-rays in hand. He will then make arrangements to once again; this will be the third time, to draw the fluid from the area around my lung. The fluid will then be sent into the lab for testing to see if it contains cancer cells. If the fluid does not contain cancer cells then there is a procedure that may be performed and I will try to describe it as I understand in my own terms. They inject a substance between the wall of the back and the lung which causes an irritant causing the lung to adhere to the back which creates a seal which will stop the fluid from going up and pressing on the lung. I guess I sorta knew that something was wrong here for when Ben took me on what now are short walks I could feel that it was once again hard to breath walking up hills. But if the fluid does contain cancer cells then…well the doctor said my chemo treatments are not cast in stone which will mean that I will need more then just the 6 treatments originally planned. So we press on. Ben is taking this news pretty hard. I am trying to tell him that whatever it is they will fix it and not to worry but of course that is not much comfort. So we keep praying and waiting the waiting is the hardest part. Guess that is all we know for now. Once again I thank all of your for your continued support and prayers. I will keep you posted and let you know what happens from here on out.
Much love to all of you. Carol
June 1, 2000
Dear Family & Friends,
I have been waiting to give you an update until I heard back from my doctors. Sorry for the delay. It seems as though I am not through with the chemo treatments as the A125 test is still at 147. To add to that I am still having the fluid collect in the pleura around the lung. So this is what they are going to do. On June 12th I will go back into the hospital where the fluid will once again be drained out for 24 hours. Then an irritant of some sort will be injected into the area, which will cause the lung to try to attach itself to the wall of my back, which hopefully will seal off the area. f this works like I am told, it will prevent the fluid from collecting around the lung. Since I was going to have another chemo treatment on the 13th they will be giving it to me in the hospital instead of at the oncology center. All the timing has to be just right with the hospital stay so that I will not be in the Nadier period during that time. This is when the blood count drops and your immune system is low. I may be in the hospital for 2 or three days depending on how everything goes. All of you have been so patient and thoughtful with your notes of encouragement so I must once again thank you from the bottom of my heart. You will NEVER know how much all of your caring has meant to me. If one ever thinks they have no friend’s boy are they wrong! Hopefully one of these days I will be out amongst the living, enjoying the sun and friends like before it’s been a long time. I have been keeping myself busy with crocheting and busy work it does wonders for the mind. To top things off my first great grandson was born this week. His name is Dylan Austin, 7-lbs. 7 oz. I haven’t seen him yet but hope to before the weekend is over. I am so proud of my granddaughter Krista for bringing him into the world.
Love to all of you, Carol
June 14, 2000
Dear Family and Friends:
This is Ben writing to give you an update on Carol’s health. This has been a difficult week but there was some good news. The good news is that her CA125 dropped again to 74. It isn’t in the normal range of 35 or below yet but it dropped from 147 to 74. We view that as positive progress. The bad news is that she went through a very painful procedure to seal the area in her pleura where fluid continues to collect. In spite of massive amounts of drugs for pain management she went through 2 to 3 hours of excruciating pain. The doctor couldn’t give her enough to stop the pain without risking shutting down critical body functions. Thankfully she made it through the procedure and is resting well this evening. She will have the tube removed from the pleura tomorrow morning and then move to another room in the hospital where she will receive chemotherapy. If all goes well she will be released from the hospital after the chemotherapy tomorrow. If not, she will remain until Friday. We will remain in San Jose for several days because the doctor is concerned about the remote possibility of her lung collapsing after the procedure that she has gone through. In summary, it has been a really rough week for her but I believe we are making progress. That’s the update and hopefully Carol will send you an update in the next day or two.
Love to all of you. Ben
June 27, 2000
Dear Family & Friends:
Once again it is time for me to let you all know how I am doing. Well, todayis a good day for me, a little tired but doing pretty well. My stay in the hospital as Ben told you was not the most fun thing I have ever done.I truly believe that someone could drive a car over me today and the pain wouldn’t be a great. For some reason the morphine they gave me to take away the pain had no effect on my body whatsoever. The doctor said he had only seen this happen one other time and was amazed that it happened to me. Therefore if you can imagine someone pouring acid inside your body and rotating you for 2 1/2 hours. Well, think I embarrassed myself by screaming. It was Ben and my daughters that had to see this and for that I am so sorry. Yesterday I went to see the lung specialist and had another chest x-ray. The doctor said that it is to soon to tell whether the procedure he performed worked. That is, will it keep the fluid from collecting around my lung again. He said it looked good for now but we will have to wait a couple of months to find out for sure. The sad part is that the fluid that was drained from around my lung for 48 hours somehow did not get to the lab for cancer cell testing?? I know………….when I found this out I was taken aback myself. I must tell you that now I find it a scary thing to go into a hospital because I am worried about mistakes that people make. It doesn’t make one feel too comfortable. But what can one do when they have to rely on someone else to cure them of their illness. We just keep our fingers crossed. July 6th I will be going in for my 8th chemo treatment and they will be taking another CA125 blood test. I have grown to live by the CA125 report. Overall, I’m getting by okay. On good days I take short walks, go shopping with Ben, and go out to lunch or dinner once in a while. On bad days, I watch TV and take naps. Doesn’t sound too exciting does it. But anyway, if it were not for my family and friends caring, prayers and well wishes I don’t think I would be able to get through this. For this I thank you all.I will keep in touch.
Love all of you, Carol
September 16, 2000
Dear Family & Friends:
Guess it is time for a little update, here it goes. Completed chemo treatment number 11. Was pretty hard to get through this time. Seems each time the recovery period is longer and longer. But today I feel pretty good, thank heaven. Had a CT scan on Thursday which showed no changes from prior scan. This is good news. The CA125 blood test is now at 41 still having a hard time getting into the normal range. My doctor will be deciding what he wants to do prior to my next treatment. If he feels that the cancer cells in my body have built up a resistance to the current chemo drugs then he will switch to another drug. This new drug will be somewhat easier on my body but more difficult for the doctors to monitor and probably will not produce the best possible results we are looking for, e.g., at least a 5 year remission. The most Taxol and Carboplatin treatments my doctor has ever given anyone is 10 and I will be going in for my 12th. It is usually expected that the CA125 test would be in the normal range after the 3rd treatment. So you can sorta see where I am in his mind. Needless to say our whole family has been stressed over all the decisions we will face in the next few weeks but believe me I am not ready to leave this world yet and will fight with every ounce of strength I have left. Guess that is the Italian blood in me. Thank you for your continued prayers, words of encouragement, and greetings they are still very important to me and very much appreciated.
Love to all, Carol
September 27, 2000
Well, here we sit in the old waiting game again. Just wanted to give you a quick update as most of you have been asking me to keep in touch. Yesterday I was supposed to have my 12th treatment but that did not happen. The doctor said he wanted to wait and see what the CA125 blood count was before he continued with the Taxol & Carboplaten drugs. They drew the blood for that test yesterday the results should be by Friday. I am to go back to the doctor on Monday morning at that time he will tell me what he plans to do. If the CA125 is not in the normal range this will indicate that these two drugs are no longer working. He would then switch me to another drug. If by some miracle the test is in the normal range he will then continue as before in hopes that it will stay in the normal range. I told the doctor I wasn’t ready to give up yet and hoped that he would treat me as he would his own wife should she be sitting in my seat. He promised me he would. So here we are playing the waiting game again. Thanks for hanging in there with me. – Carol
October 2, 2000
Well, here I am once more. Wanted to let you know that unfortunately the miracle we were looking for didn’t happen this time. The CA125 blood test did not get in the normal range so there are still cancer cells in my body. Today I started on a new chemotherapy drug called Topotecan. I will be having a treatment every day this week then off for two weeks and back on again for another week. The doctor cannot tell me how long or how many of these treatments I will be getting. Once again it will depend on the CA125 test. If this drug works and the CA125 gets in the normal range then I have to keep it there for at least 2 to 3 more treatments. If, however, the count does not get in the normal range or even goes up, the doctor will switch to yet another drug. The drug I am now on can do a number on my red and white blood cell counts so we will have to monitor them very closely. I must stay away from anyone that might be sick, have a cold, etc., and monitor my temperature closely. If we are in San Luis Obispo and I get a temperature then I must get back to the doctor in San Jose as quickly as possible. It does make for a very interesting life style. So far, after today’s treatment I feel pretty good. A little tired but other then that no particular side effects. Hope that carries on for the rest of the week. They say I might even grow some of my hair back but think that might take several weeks. Thank you for all your prayers but the good Lord must be very busy at this time. I hope that he is working the hardest on the children with cancer because my heart goes out to them. So guess that is all the news I have for now. Thanks again for your concern and prayers they couldn’t be more appreciated.
Love to you all, Carol
October 17, 2000
Dear Family & Friends:
It’s been a while since I have been able to update you on my progress so thought I would take a moment to do that now. This new drug has had quite an effect on my body. Something that was supposed to be easier on the patient has turned out to be harder on my mine. After my treatment Ben and I headed to San Luis Obispo for a two week rest from treatments. At least that is what we thought anyway. Each day that passed the pain got worse and my energy level dropped. I also started to swell up in the face, feet, and legs. We contacted the doctors office in San Jose wherein they sent me to the local hospital to have blood counts taken. Turned out that the levels were dangerously low. To the point of needing a transfusion. We wanted to go back to San Jose for the transfusion but they told us it was too dangerous to travel because if we were in an accident I could bleed to death! Great news huh? So then the process was we needed to find an Oncologist there in San Luis Obispo before they would do a transfusion at any of the hospitals. That process took us the whole day. I finally got the transfusion but did not seem to improve much. The swelling just kept getting worse. I sorta looked like a baldheaded Budda! We contacted my doctor Monday morning here in San Jose and he wanted to see me that day. So we hurriedly packed up everything and headed for San Jose. My blood levels are still low at this point so I am getting shots once again all week to try and bring them up. They will take blood counts on Wed. & Fri. to see how I am doing. The plan is to go ahead and give another treatment of Topotecan next Monday. We are currently waiting to see what my CA125 count is which should be tomorrow or Thursday. Low blood levels prevent me from seeing my great-grandson as babies can’t tell you if they are sick or not. This has put a lot of stress on my granddaughter Krista and it breaks my heart. Hopefully I can see him soon. My daughters Carrie, Janine & Denise have been such a wonderful support for me we have done a lot of laughing and crying. Dr. Ben is the best in the whole world and is taking excellent care of his patient. So we go on and try to beat this thing as best we can. Looks like we will be staying in San Jose most of the time because the doctor is concerned about my blood counts. My continued thanks for your prayers and thoughts.
Love to you all, Carol
October 27, 2000
Dear Family & Friends:
Here is the latest on what is happening. I wasn’t able to get treatments last week as my blood and platelet counts were not high enough. So I had a week off which was nice. I actually got to see the bones in both my feet for the first time in months. That means that the swelling has gone down some. I do take three diuretic tablets a day to keep this under control. It is amazing how much liquid a body can store. Just got back from the doctor this afternoon wherein everything checked out okay to start another round of Topotecan on Monday through Friday. The doctor said he would like to try at least two rounds of this drug to see what happens. Then he mentioned that there are other drugs they can try if this one does not seem to do the job. My CA125 test is now at 55. It seems to be creeping up instead of down. Hopefully one more treatment will do the trick. Never knew my life would be so dependent on numbers. I do feel pretty good right now which almost makes one think they are not sick at all. But after Monday reality will hit me again. Guess you have to go through the bad to get to the good part. I lost a very dear friend this week from cancer her name was Sandy. She was a wonderful wife, mother and friend to so many people so I have no complaints at all. She always told me to keep fighting which I will do but her fight is over now and my heart is sad. Please hug a person with cancer. Thank you all once more for your continued prayers, cards and flowers. I am very blessed.
Love to you all, Carol
November 28, 2000
Dear Family & Friends:
I hope that your Thanksgiving holiday was wonderful and that you were all with those that you love. I was fortunate enough to have all my daughters, their husbands, grandchildren and great grand child and my mother with me and I felt very blessed. I wish I had some good news to report regarding my bought with cancer but unfortunately it is not to be at this time. My CA125 blood test seems to be going up on this second drug instead of down as we had all hoped it would do. The prior count was 55 and now it is 109. I was supposed to get a chemo treatment yesterday but instead I am going in for a CT scan today at 12:45. This scan will be compared to the last one and another CA125 test will be performed this week. After the results of both of these tests then it will be decided either to stay with this drug or try the next one in line. I had a conversation with the doctor on what my life will be like from this day forward. He indicated that from now on I will be getting some sort of treatment in one way or the other for the rest of my life. As to how long that would be, well, a five year remission is out of the question now. It is more like one to two years and in the worst case six months. Of course we are hoping that whatever time I have left it will give the researchers more time to come up with something that will cure me for good. Please don’t think that I am giving up just yet. I will continue to fight this battle as long as I can. I know with all of your continued prayers I can become stronger each day. As soon as I have more information I will let you know.
All my love, Carol
Yesterday I had my visit with the doctor. The news wasn’t as good as wehad hoped it would be. My CA125 went up again to 131and the CT scan showed that there is some cancer cell accumulation in the lower pelvic area. The doctor has switched me to the third chemo drug called gemcitabine. I had my 14th treatment, first for the new drug, yesterday and will get one a week for the next two weeks. Unfortunately, our plans to have Christmas with our children and my mother are not to be this year as the doctor told me that would be my worst week. In other words my blood counts will be at their lowest so I would be very susceptible to catching colds, etc. We continue to fight the battle as best we can. I love your cards, prayers and wishes very much.
Love, Carol
January 2, 2001
I hope that you all enjoyed the holiday season and are looking forward to the new year 2001. I wish that I could give you better news as far as my fight with cancer is concerned but that is not to be. The CA125 test has gone from 131 to 229 on the third drug. The doctor doesn’t want to stop it at this point but give it another try to be sure. So I had another treatment today. The problem is that after this drug there may be only one or two more to try. The doctor indicated that we are running out of treatments at this point. My particular kind of cancer seems to have been able to develop a resistance to all drugs tried so far. Guess it is like some pesticides sprayed on insects after a while they find a way to just walk over them. That is how cancer seems to work it just finds ways to keep on going no matter what is thrown its way. I asked the doctor what my future looked like at this point and he indicated it was not good. At best he thinks I have a year or less. There may be Clinical trials going on and he plans to contact a research oncology gynecologist to see if he knows of anything going on at this time. Ben and I have talked at length about what I want to do and I really feel I would not like to spend what precious time I have left running all over the world looking for cures that might not be there. I would much rather spend quality time with Ben, my children, grandchildren and all my family and friends. At this point I have turned my life over to God and could still use all the prayers anyone wishes to give him on my behalf. Thank you all once more for your words of encouragement, notes, cards, emails, prayers and wishes.
Love to you all, Carol
January 18, 2001
Hi to all,
Carol is in Good Samaritan Hospital again. She is having a very difficult time with breathing and gets exhausted simply walking across a room. They did a chest x-ray and found that once again a significant amount of fluid has collected below and on the right side of her right lung. They will remove the fluid tomorrow afternoon using a different and far less painful procedure. The procedure will be done by a thoracic surgeon using an arthroscope and Carol will be asleep. The surgeon will also spray a “talc” in the area where the fluid was which will cause an irritation to the area and hopefully causes it to grow back together and thus prevent fluid from collecting there in the future. We still don’t know what all this means relative to her cancer and won’t find that out until late next week at the earliest. I’ll keep you posted on her progress.
Ben
January 29, 2001
Dear Family & Friends:
Here I am again to give you the latest on my treatment. The third drug, Gemcitabine, has proven not to be doing any good. Therefore, drug number four called Navelbine was administered today for the first time. It is said to have few side effects but must be injected very carefully because should a drop of it get on my skin then it could eat a hole through my skin! Great huh? You can imagine what I was thinking as it was going in my body. Wondered if I would be riddled with holes and start spewing blood all over the place. Needless to say this did not happen. They will try using my veins for a few times to see if the drug is working. If it works I will be getting long term treatments. They then would like me to have a medi-port inserted in my chest area to make it easier to administer the drug. We must also keep a close watch on my white blood cell and platelet counts as this drug may drop them down which would mean more blood transfusions. According to my doctor there are no drugs that will cure me. But, there may be one that will hold the cancer at bay and give me a little more time. So we keep trying. The hard part is to know that my life will primarily be spent in doctor’s offices from now on. Ben is so wonderful to even have to deal with this. I don’t know how he does it each day. “He’s a stronger man than I said Gunga Din.” Thank you all for hanging in there with me. I probably gave you more information then ones needs. I continue to appreciate all of your cards and flowers and good wishes they fill my heart with happiness.
Love to all, Carol
February 16, 2001
Dear Family & Friends:
You haven’t heard from me in a while so I thought I would give you an update. Just completed my 17th chemo treatment on drug number four. This drug has been particularly hard on my body more so than any of the others. It causes a great deal of pain which Vicodin no longer seems to handle. Yesterday I was able to get a new pain killer called Dalaudid. They gave me this drug when I was in the hospital and it seemed to help with the pain. I am just having a little bit of difficulty figuring out the dosage to see what will keep me free of pain for the most time. I am getting close to working that out. Yesterday we got the results of the CA125 blood test after the 4th drug and unfortunately my number did not go down once more. The last one was 227, the new number is 276. The doctor told me once again not to get discouraged as sometimes this happens with the first treatment. He almost canceled the test because it is misleading but he went ahead to see if it had dropped. He said that if it dropped that would be good news but if not it doesn’t mean the drug isn’t working. Of course I would have been much more encouraged if the number had dropped way down. I see the doctor again on the 28th of Feb. we should know more by then on the next steps for me. I do wish that more research were going toward ovarian cancer. You hear mostly about breast cancer and Aids. There is a good side to that I guess and that is because there aren’t as many cases of ovarian cancer. On a more positive note Ben bought me a bigger place here in the Villages on Valentine’s Day. Since we will be spending more and more time here due to all my doctors being here I had asked for a bigger place if possible. It was a very hard decision to make but at this point in my life I felt there wasn’t another choice for me. At least the amount of time we spend here will be more comfortable for everyone. Maybe the distraction of moving will take our minds off of cancer for a while. Thank you everyone for your continued support and prayers. Love, Carol
March 7, 2001
Things are progressing along. My new pain medication is helping a LOT. I wish I could have had it a long time ago but guess the doctors like to wait as long as they can to switch to a stronger drug. As far as how this new chemo drug is doing I really don’t know yet. It will be a couple of weeks from now before they give me another CA125 blood test and that will be the telling sign. So once again patience comes in which is sometimes the hardest part. Hopefully next week we will be moving into our new place at the Villages. The distraction from cancer has been good but boy did I forget what a stressful thing it is to try to buy and sell a place. But with the help of my family I think we are going to be able to pull it off okay. Thank you all again for your emails and cards they lift my spirits very much.
Love to all, Carol
March 15, 2001
Dear Family & Friends,
We are finally moved into our new home in San Jose. It has been a real challenge. But without the help from our family we could have never done it. Our son-in-law Mark flew from Idaho just to help in the process. My daughter, granddaughter and her husband were part of the team too. Ben has been working so hard and long just to give me this lovely home. I know we will enjoy the time we spend here. Some of the ladies here at the Villages have been fixing dinner for us during the move and it has been without a doubt a blessing. They really are wonderful. I am doing pretty good, however, white blood counts are down so was unable to get the third chemo treatment in a series of three. The doctor said he wanted to give my body a rest. I will not know what the CA125 test will show until March 26th so keep your fingers crossed. God Bless all of you.
Love, Carol & Ben
March 27, 2001
Dear Family & Friends,
Well, here we go again. I had two treatments of Navelbine this month. After the second treatment the white blood counts dropped to a level that indicated I should not have the third one due to low white blood counts. Therefore I had a week off and then another week of rest. Which proved to come in real handy because my daughter Carrie came to help me decorate my new home in San Jose. Yesterday, March 25th, I went back to the doctor. He told me that the Navelbine was not working as now the CA125 blood counts are at 697. So on we go to chemo treatment number 20 and drug number 5 that is called Doxil. It has some new strange side effects to look forward to so don’t know exactly how I will be feeling. Perhaps I will be lucky and not have any trouble at all. On the positive side decorating my home with Carrie has been a lot of fun and has allowed me to take my mind off of other things for a while. Carrie has been such a tremendous help she certainly has the talent for this sort of thing. There are still some little things to do here and there. This should keep me occupied and give me something to look forward to, as Carrie must get back to her family in Idaho soon. Today I will have an ultra sound on my left leg due to swelling to make sure that I don’t have a blood clot. At the suggestion of Dr. Prozig I will try to see Dr. Perez the Gynecologic/ Oncologist. There may be some sort of surgery he could perform that would help my situation. This would be something he would have to tell me after his examination. I have a feeling this would involve some CT scans, etc., before he could tell me anything. So on we go up up and away in the hopes that we can still beat this thing. Keep your prayers going and thank you for your continued support and kindness.
Love to you all, Carol
April 17, 2001
Hello to all, Well, it’s been a while since I have been up to writing so I thought I would give it a try this morning. I hope that you all had a wonderful Easter holiday with those that you love. Let me see I can’t remember where we left off but here goes. Ben got very sick with some sort of virus so as soon as he felt it coming on he left to go stay at our home in San Luis Obispo. Once there the doctors would not let him come home because they were afraid he would get me sick. So he was gone for 9 days. I can’t tell you how awful that was. We hadn’t been apart that long for many years. It was of course during this time that I got very sick. I decided I would try to take myself off the Dilaudid medication because I thought all these drugs were not good for me. So I tried to go back to Vicodin. BIG mistake because this caused me all kinds of problems. It was like a drug addict going cold turkey they say. You just can’t imagine how bad it could be. Of course the doctor didn’t know that I was trying this so when he found out I got the proper scolding. This took about a week to overcome. This took about a week to overcome. To boot it didn’t work anyway and had to go right back on the oills. When I was doing so bad my granddaughter Krista came running over to take care of me, then Janine came and watched me for two days, then Denise’s husband Mark was in town so he came for two days, cooked for me and everything. Not many son-in-laws would do such a thing for their mother-in-law. I was so proud of all of them. Denise has been with me since last Wed. It has been a real joy having her here. Also, my cousins Anne and Chris came to visit for a few hours all the way from the East coast. Anne had business in San Francisco. It was wonderful to see them and helped very much to lift my spirits. By this time Ben was finally able to come back to San Jose. He felt comfortable that he was pretty much over his illness. It was so good to see him again. Even though he told me no hugs for a while we did it anyway and it was wonderful. The next problem was all the pressure in my stomach. It got so hard and full of fluid that I could hardly breath. This sent me to the emergency hospital to have the fluid pumped out of the abdominal cavity just like they did from around my lung. The doctor said I was a hard person to tap because of so much tumor in the abdomen and the fact that I am not a very large person. He could not find a spot for quite some time that he was comfortable with. There is a danger of puncturing the bowel because it tends to float toward the area being tapped. If that were to happen guess you could be in all kinds of trouble. Fortunately for me this did not happen. It took about a day for me to receive relief from this procedure but was certainly worth it. This, however, cannot be done very often because along with the fluid taken out comes all the protein in my body and sooner or later would cause the cancer to take over more parts of the body. The doctor then wanted to try me on a Fentannyl patch. This is a medication that would help me sleep through the night rather than get up every three hours for pills. But wouldn’t you know it I was having a worse time on this patch than the pills. So now am back on the pills and decided that getting up during the night wasn’t so bad and am feeling a little better now. Yesterday I had my 21st chemo and second treatment of Doxil. The doctor said he wanted to try another round even though we don’t know as of yet if it is working. Probably won’t know until the results of the CA125 test come back the end of this week. Since we are running out of drugs we just can’t give up so soon on one drug. I don’t know whether I left anything out but this is where I am right now. Feeling good today for the first time in a long time.
I thank God for all your prayers, caring, and words of encouragement. Thank you again from the bottom of my heart.
Love to you all, Carol
April 20, 2001
Unfortunately the CA 125 test is not good. Now at 1837. I sorta expected it because of the way I feel. But I am not giving up yet. They always tell you that it takes a couple of doses of chemo to get a good reading. So we will just wait for the next one.
Love ya, Mom
May 7, 2001
Dear Family and Friends:
This is Ben writing for Carol. We had an appointment with Carol’s oncologist today. He recommended that she stop further chemotherapy and focus on comfort care. He said that further chemotherapy has less than a five percent chance of helping Carol and the treatments would cause more pain and nausea. He told Carol and I to think about his recommendation for a few days and if she wants to try more and different chemo drugs that he would give them to her. As of this moment Carol doesn’t want to go through more chemotherapy and prefers to be as pain free as possible for the time that she has left. The doctor did not give us an estimate for her remaining life expectancy but did say that she will get weaker as time goes on. We have an appointment with him in one month and we will discuss where she is at that time. Carol’s Oncologist and Pain Management Doctor both recommended that she have a mediport implanted in her chest so that continuos pain medication can be pumped into a large vein. The pump is an electronic device that she will wear around her waist in a fanny pack. It will be programmed to allow Carol to give herself an additional dose if she has a sudden surge of pain but will not allow her to overdose. We will try to get the mediport implanted this week. Carol is requesting that visitation be limited. As much as she would love to see all of you it will be tough to cope with. If you do want to visit please call me and let’s discuss it.
Love to all, Ben
May 14, 2001
Dearest Pastor Mark,
Thank you so much for your kind note it means so much to me. I, too, hate this cancer and am especially sad when I think of your mother going through it as well. It is hard on me so I can’t imagine what it must be like for her. God bless and keep her strong as she goes through this ordeal and God bless you as well. I told Ben that I have the easy part it is him and you that have the hard part. I don’t think I would have what it takes to help someone as much as Ben has helped me during this past year. I know how hard it is on him and my heart breaks as I watch him suffer with aches in his heart. If only there were something more I could do to ease his pain I would. Pastor Mark, I just wanted you to know that I have had a wonderful life with no regrets. Thanks to Ben I was able to be a stay at home mother and take care of my children while they were growing up. What a joy it was for me to be able to be there every day when they came home from school. To help them with their homework and enjoy all of their school sports. If only I could get the message out to all parents that this is the best career in the world if it is children that they want to have. Then when they graduated from high school and went on to start their own lives I (along with the encouragement of Carrie) was able to go out into the corporate world and have a career for eleven more years. I was able to have the satisfaction of working with high tech folks and got that wonderful feeling of being recognized as a good employee. Then when the time came I was able to stop working and become a better wife to Ben as he struggled in the Silicon Valley high tech industry with it’s hectic pace. He enjoyed coming home to a house filled with the aroma of a home cooked meal. The sad part is when Ben was ready to retire I had to go and get sick. Some how this part doesn’t seem fare but then I can’t ask for everything. God gave me as much as he could. You have been such a wonderful influence on my girls. I just want you to know how much I appreciate all that you have done for them. You have led them in the right direction and it makes me very proud. To know that they have all truly found the Lord with your help brings me great satisfaction and joy. Thank you so much for this. God bless and keep you strong as you take care of your own mother.
Love always, Carol
May 18, 2001
So glad you were able to get home okay. Just wanted to let you know that Dr. Lilith does not want to drain me again. He said the pocket that he went in before was so small that he feels it is to dangerous to try again. The only thing they can do is have Dr. Massey increase my pain medication so I can stand the pressure. So be it we just go on. The last CA125 was 2160 at least it is not growing as fast as I thought.
Take care I love you all, Mom
June 4, 2001
Hello Everyone,
This evening the angels came to take Mom/Carol away to heaven. Mom passed away peacefully this evening at 9:40 PM PST at home with her loving family by her side. We will update everyone with details about Mom’s funeral when we have all the specifics. Thanks to everyone for all their love and support throughout this past year and a half.
From Carol’s loving Family