Sue's original Journal that she kept to document her battle (continued)
Originally diagnosed with Stage 3 Breast Cancer in July of 2003, I completed treatment in March of 2004 and then was diagnosed with a recurrence in October of 2004. My Journal started out as a series of e-mails to keep friends & family updated on my recovery.
RACE FOR THE CURE
Pledges are coming in, and I have exceeded my goal of $4,000, but would not mind exceeding it further. Please go to my Race for the Cure Homepage to donate online. Friends, family & all - Sue lost her battle with cancer at 2:32am. ************************ Well, quite a while since the last update, and unfortunately this time it's not because there was nothing to report -- just nothing that I wanted to have to report. About a month after my last update in September, having thought I was doing quite well, I found a lump in my neck, and in October of 2004 was diagnosed with a local recurrence of my breast cancer. In November, I had surgery to remove the lump for the purpose of a new biopsy to confirm that this was a recurrence and not a new cancer. The doctor assured me that this was not life threatening, and there was no need to rush into any drastic treatments, so we started out with hormone therapy (tamoxifen) to see if that would have any effect. At the same time, I asked for a referral to a nutritionist, because I was concerned that between the extra weight I had been carrying and the crappy diet I had been eating, I wasn't doing anything to help my condition. So, I got put on an anti-inflammatory diet -- I basically became a vegetarian, shopping at the organic food markets and stocking up on supplements which I take by the handfuls morning & night, drank lots of tea, and bought a juicer. At some point, I got the name of a Chinese Doctor, and learned a lot about Traditional Chinese Medicine. Initially, the teas that I was given to brew seemed to be helping, but after a couple of months and another PET Scan, my oncologist had evidence that my cancer was progressing and it was time to start planning for chemotherapy. Many years ago, I had read that there had been such success with the treatment of children's cancers because most children are enrolled in some kind of clinical trials. The same story had said that adults did not sign up for the trials at the same levels and therefore progress for adult treatments has been slower. I remember thinking that if I were ever in that position, that I would certainly participate in a clinical trial. So here I am now, enrolled in a Phase II Clinical Trial. I am on a standard chemotherapy drug called Docetaxol, which I get intravenously every three weeks, plus I am also taking pills twice a day for the clinical trial - either the study drug or a placebo. (At this point, the drug doesn't have a name, just a number.) On Thursday, I had my second dose of Docetaxol, and have been on the trial medication for about 3 1/2 weeks. The chemotherapy seems to be helping relieve my pain, but I'm seeming to need a lot of sleep. I also had to be hospitalized about a week after the first treatment due to a low white cell count and exposure to the flu. I've been back to work on a somewhat limited schedule for the last week. They tell me my white cell count would be expected to drop at about 7-10 days after my treatment, so I'll have to be a little more careful this cycle to not get exposed to any diseases. I think I'll be wearing a surgical mask around crowds! I'll have another CAT Scan a couple of weeks after my third dose of chemotherapy & see whether any of this is doing any good. Well, I guess I'll wrap up this update for now and I'll report again after the scan. ************************ I hadn't planned on an update so soon, but I caught a chill this weekend which resulted in a temperature spike to 102.7. As instructed, I called the hospital, they had me go to the emergency room, and of course, I was admitted because of the temperature and a very low white cell count. I'm feeling ok, but they will not let me out of here until my white cell count, specifically my "Absolute Neutrophils", is above 500, and right now I'm at about 150. They are giving me shots again to boost my body's production of white cells, and this is causing general body aches. Hoping to be out of here by Wednesday. ************************ A pleasant surprise, and my white cell count had recovered to a normal level by Tuesday morning, so I was released at 11am on Tuesday. This is the first time that I've been admitted to the hospital where I didn't feel too bad. In fact, other than the aches & pains that I now accept as my "normal", I was feeling fine. This meant that for the first time, I actually had conversations with my roommates - the first one left late on Sunday night, and the second arrived late on Monday night. Both of these are ladies I hope to keep in touch with. While in the hospital, I discovered that they had PC's with internet access, and since I had nothing but time on my hands, I was able to get almost all of my updates from my first treatment posted, as well as my Journal that I kept through the diagnosis process. I bothered the nurses daily to call their Help Desk to send someone to fix the PC's -- although I could update my website, there were a lot of sites that you couldn't get to, such as hotmail, yahoo mail, and aol mail. Unfortunately, this was still not working when I left, but maybe if I end up in there again... In wandering the floor, I also found treadmills and an exercise bike (which I didn't use), and found jigsaw puzzles, which I spent a few hours on. My nurse was not too happy with me for having disappeared that long. Apparently, I was due for another dose of antibiotics and she didn't know where I was. Actually, all of the nurses & nursing assistants were great this time, perhaps my feeling good made all of the pokings & proddings a little less unbearable:-) My next chemotherapy appointment is next Thursday, and my doctor may be wanting to decrease my dosage since I've been hospitalized after both treatments so far. The other option is that they my have me get the shots to boost my white cells, or they could do both. I'll post an update after my next treatment & let everyone know how it went. .....Sue ************************ Friends, Last Thursday, I was scheduled for chemotherapy, but my oncologist was not happy with my progress based on her examination of me, so instead of chemo, I was to be scheduled for a new CT Scan. Somehow, this doctor is able to make things happen, and I went right over for my scan. Unfortunately, I had to wait until Friday to have the scan read and compared against my previous scan. As my doctor suspected, my cancer is progressing, so they began the phone calls to the drug company to "unblind" the study. There was a strong suspicion by the doctor and the trial nurse that I was getting the placebo based on the side effects that the other patient on the study was having. The study protocol would have waited three weeks to do another scan, so I'm happy that my doctor is a little more aggressive on this. So it turned out that I was getting the placebo and not the study drug, and by Friday at 4:45 pm, I got a call to get down to the Clinic and pick up the real drug. All of this happened after 2pm on a Friday of a holiday weekend. The study drug is just half of my treatment, the other half is the chemotherapy, so now I've got to get back on the schedule for the chemo that I should have had last week. With the holiday, they're really backed up, trying to get 5 days worth of patients in 4 days, but I'm hopeful that there will be a cancellation, or worse case, I'll get in by Thursday. The chemo may not be doing as much as we'd like, but it does provide me with some relief from the chest/back pain I've been experiencing I've now been on the actual study drug since Friday night, and can't really tell if my pain is from the new drug or from not getting my chemotherapy, but I am also having some other minor side effects. I slept most of the day on Saturday & Sunday, but was feeling better today for a picnic at my Sister's. They tell me that the other patient on the study is doing well, so hopefully I'll be able to report some success soon. Please continue to keep me in your prayers. Hope everyone had a great Memorial Day weekend! .....Sue ************************ Friends, About a week and a half ago, I got a copy of the report from the CT Scan that was done after my last doctor's visit. Unfortunately, this report indicates that the cancer has spread to my lungs, so I've been a bit bummed out about that. Also, because of the unblinding of the Clinical Trial, I'm now getting the actual study drug instead of the placebo that I had been getting, but I will not be continuing on the intravenous chemotherapy. The logic is that this wasn't working anyway, even though it provided some pain relief. Fortunately, the doctor walked into the exam room today and actually said that she thought I looked better today compared to two weeks ago. At two weeks on the study drug, it's too soon to say whether or not this is working, but when I go back in two weeks, if there's any indication that this is NOT working, she'll pull me off this study and start some other treatment. We're also going to have another CT Scan scheduled along with the next appointment in two weeks, which I've been told to call & cancel if I believe that the tumors are shrinking. We're hopeful that this study drug will produce some benefit in the next two weeks. So far, I've had no adverse effects from the drug, and I'm sleeping a little better at night (even in this heat!) and taking one less dose of pain medication. Another positive, my hair should start coming back in soon. I didn't lose all of it, but when I was pulling clumps of hair out of the shower drain, I had Greg take the Flow-bee to it so it's about a half-inch long all over. At the very least, I'll have another update posted after my next appointment in two weeks. Keep the prayers coming, and feel free to pass this website on to anyone you want. Thanks. .....Sue ************************ Friends, Friday was a busy day with bloodwork, scans & doctor visits. The bloodwork alone took 5 "sticks" and resulted in 4 very colorful bruises. With all of the difficulty that the nurses are having in drawing my blood, I'm sure their egos are just as bruised as my arm, and I'll be getting a permanent port installed so the poor nurses ;) don't have to take my abuse any longer. Although I didn't see any of the reports on the bloodwork, I'm sure this was all fine, but unfortunately, the CT Scan was not. I don't have the final report on this yet, but the nodes in my lungs are larger and I now have a "Pleural effusion" which is fluid outside of my lungs. I am now off the clinical trial medication and will begin a new combination of chemotherapies on Friday, July 1st. For anyone who might want the details, the new drugs are bevacizumab, brand-name: Avastin (intravenous, every 2 weeks) and capecitabine, brand-name: Xeloda (pills taken morning and night for 2 weeks on, 1 week off). We'll just keep trying until something works. I'm still trying alternative/complementary therapies. I've been back seeing my Chinese Doctor for the swelling in my arm, and in addition to the massage, he gave me some exercises to do. I had a Reiki Master at my house for a healing session. I also have finally managed to get an appointment with Dr. Issam Nemeh, the doctor who does the faith healing services around the Cleveland area. I'm also trying to read all of the books that have been recommended, and anytime I hear of another herb that might help, I look it up on the Sloan-Kettering website (on my links page). Even with all of this going on, I'm trying to keep a bit of normal in my life. Greg, Jack, and I went camping this weekend with my sister, Ann and her family. It was a little too hot for me, but the campground had a nice swimming pool. Jack loves the water, so I spent about 2 hours in the pool with him. Fortunately, Greg & Tim came back from fishing - yes, we had fish for dinner - in time to relieve me for a nap. (I napped a lot.) Jack also had his cousin Alexis to play with, so that was nice. The heat this weekend was not good for my arm. The swelling that had been in my shoulder & upper arm has now extended down to my wrist. I switched my wedding ring to my other hand so I don't have to get this cut off if the swelling continues to my hand. Keep the prayers coming, I am convinced that is where my healing will be found. .....Sue ************************ Two weeks have now passed since I started the latest treatment. Unfortunately, for these last two weeks, I have been very nauseaus and haven't moved far from my recliner. I am feeling optomistic that this treatment is working because I am not taking as much pain medication as I had been. I had my second dose of the Avastin/Intravenous drug yesterday and that went fine. I'm off the Xeloda/Pills for now, planning to start up again next Friday - hopefully I'll be feeling better while I'm off this for the next week. On the 28th, before my next dose of Avastin, I'll be getting a permanent port installed so that I don't have to deal with the needles anymore. I'll also be having a scan on the same day, so we'll have a good guage on how this treatment is working. .....Sue ************************ Friends- Today I had my 3rd IV treatment of Avastin, and I've completed the 1st week of the second cycle of Xeloda (pills). I was supposed to have had a "port" installed (outpatient surgical procedure) this morning, but since I couldn't resist the zucchini bread that Mom brought with her, they couldn't give me the anesthetic so the procedure has been rescheduled for 2 weeks from today. I also thought I had a CT Scan scheduled for today, but that was another mistake on my part -- it also was scheduled for my next visit. The GOOD NEWS is that my pain level has decreased. I am now able to sleep through the night (in bed, not on my recliner) without getting up to take pain medication, and I take significantly less medication during the day. Also, I thought that the lump under my right arm was smaller, as was the disease on my chest, and the doctor validated this for me today. She is so sure of my improvement that she has cancelled my CT Scan, and we'll reschedule this at some future date. Whether it's the prayers, the standard chemotherapy, the Chinese herbs, dietary or mental focus on my part, I don't know but something is working! Please continue to keep the prayers and positive thoughts coming my way. .....Sue ************************ Friends- Sorry for the delay in my updates, but I just got out of the hospital again this morning. Things have been going quite well, and I managed to get my port installed last Thursday, followed by my 4th IV treatment of Avastin - the port worked great! Unfortunately, on Saturday I had a bad headache and was running a temperature and my instructions are that anytime my temperature goes above 100.5, I have to call the doctor and they make me go to the hospital. I was pretty sure it was nothing since Jack had come home from daycare sick on Wednesday and just had a brief one-day illness, but because I had just had the surgical procedure to install the port, combined with the chemotherapy, they admitted me. On Saturday night they did a CT Scan of my head to rule out a metastis of the cancer to my brain - nothing unusual found there, thank God! My white cell count was good, but the doctor really wanted to find out what caused the symptoms and she felt that she needed to rule out Meningitis, so I had my first Spinal Tap. I really had always thought that this was an extremely painful procedure, but it was nothing. Spent two more days in the hospital waiting to see if anything would grow in the petrie dish and finally got out today. Missed my yoga class, though. I'm now on a very minimum amount of pain medication, but I'll go back to see the doctor on Friday to see if I can start back on my chemo pills this week. As always, please continue to keep the prayers and positive thoughts coming my way. Thanks!!!! .....Sue ************************ Friends, Good news to report this time...I've been feeling so much better that I have returned to work. Full time except for chemotherapy days. I'm very tired after 8 hours in the office, but I feel like my life is getting back on track. Jack treated me to a full dose of terrible two's today. I took him out running errands with me this morning to try and wear him out so he'd take a nap before we had to go to a friend's daughters baptism. I put Jack in for his nap but could hear that he wasn't napping. When I finally got up to check on him, he had baby lotion all over his bedroom carpet, which he had started to clean up with kleenex. Got him cleaned up and back in bed, and while Greg and I were on our computers, he snuck downstairs and got toothpaste all over our bathroom and then scribbled all over the floor and cabinets with a purple surgical marker. Wish I had taken pictures! He had a good bit of toothpaste and purple marks on himself. I have now had 6 doses of Avastin (IV Chemo) and have just started my 4th cycle of the Xeloda (pills). I will continue on both of these treatments as long as I continue to show improvement and do not develop a bad reaction to either of them. I am scheduled for a CT Scan on the 29th, so hopefully that will confirm the improvement in my condition. As a follow up to my hospitalization last month, my doctor did confirm that I had viral meningitis, but fortunately a form that responds to antibiotics. I'll be walking the Susan G. Komen Race for the Cure again this year (October 8th), and hope that all my friends will again support this cause. My hope this year is to raise $3,000. Email me if you need to know where to send a check! As always, I ask you to keep the prayers and positive thoughts coming. You are truly making a difference in my recovery! .....Sue ************************ Friends, More good news to report this time...I just had a CT Scan on Thursday, and things are looking good. The report noted "overall improvement"; some areas are showing improvement, and other areas are stable. I've had a bad cough for several weeks now (something Jack brought home from daycare), and according to the CT Scan there was something in my lung "suggestive of evolving pneumonia". So, without a test to confirm that, I'm now on antibiotics for a few days. The other significant sign in my recovery was that when the nurse asked me my pain level, I had to think for a minute and then said "ZERO". Back in June, my answer was 7 or 8 on a scale of 10. So, I've stopped taking the pain medication to see if I'm still at a zero without it. The doctor warned me about the possibility of "withdrawal" because I've been on the medication so long, but so far, no sign of that. My last dose was Friday morning, so I'm really not sure when I would expect these symptoms. Because something is working, I will be continuing with the chemotherapies that I started at the end of June. Still eating my vegetarian diet, taking vitamin, mineral, and herbal supplements, and as always, counting on your prayers and positive thoughts. .....Sue ************************ Friends, Tomorrow I get on a plane bound for Lourdes, France. I'm going with my Mom and my sister, Mary, in search of a healing miracle. I could use all of the extra prayers and positive thoughts you can send my way for the next week. I'll certainly be praying for all of my friends and family while I'm there. As an update, I'm off the pain medication with the exception of my motrin. The pain level isn't at zero anymore, but it is certainly tolerable. .....Sue ************************ Friends, My Mother, Sister and I had a nice time at Lourdes. Did a lot of walking with the tour group, but overall it was a good, peaceful place. We went to the baths twice, and drank from the spring, and prayed a lot. I think we were all worn out by the end of the week. At my doctors appointment on Thursday, we came to the conclusion that the cancer is again growing, at least in the lumps under my right arm. This just means that the current therapy is no longer effective. I am feeling pretty good, the pain is still at a minimal level. So now I've got a few weeks to make a decision on whether I want to go with another clinical trial, or go with the next traditional chemotherapy. I'm thinking I'll probably go with the clinical trial, just waiting on feedback from my research advisor. Even with this not-so-good news, I'm doing ok & looking forward to the holidays. Please continue to keep my in your prayers. .....Sue ************************ Friends, As of my last doctors appointment, I thought I'd be starting up on the clinical trial for my new chemotherapy last week, but so far I'm still waiting for everything to get organized for this. I will probably be getting another dose of the previous chemotherapy to hold me over until the trial is ready to go. The good news here is that I get to hold off on the toxic stuff until after the holidays, although I'd just as well like to start killing off more of these bad cells. Still doing ok, but I've had a bad cold or something for the past month, and so I've been needing a lot of sleep - when Jack goes to bed, Mommy goes to bed, too. Wishing all of you a Happy Christmas! .....Sue ************************ Friends, Well, It's been another week of fun at the Cleveland Clinic. Finally started my clinical trial chemotherapy yesterday, but it was a long road to get there! Last week, when I was again supposed to have started the trial, the paperwork still had not all come together, so I knew I was not getting treatment. Due to some other symptoms I was having, I still went ahead with my doctors appointment, and the initial reaction was that "it's looks like an infection, lets do antibiotics". So faithfully, four times a day, I was popping more pills in the hopes of making this problem go away. My follow-up with the doctor was on Monday. This was supposed to be a quick appointment to clear me for starting the clinical trial on Tuesday. Unfortunately, the "infection" hadn't improved any, in fact had gotten redder, and the doctor no longer believed the "infection" theory. So I got added on to the schedule for an appointment with my breast surgeon. After waiting several hours in the waiting room (and finishing a cheesy smut novel) I finally got in to see the doctor. But first the nurse for questions, the Physicians Assistant for an exam, and of course this is a teaching hospital, so a couple of trainees had to check me out, then finally the doctor. He checked out my remaining breast, which was pinkish-red, tender, and about the size it was when it was serving its rightful purpose in life, and decided I needed a mammogram (I know all the women over 40 are cringing - guys, just imagine putting a testicle in a vice and clamping that down as hard as you can stand it!). The radiologist did not find anything on this other than highly dense tissue, so next we did an ultrasound - nothing here either. So, back to the waiting room with me, and the clinical trial nurse stopped by to let me know that chemo was cancelled for Tuesday & rescheduled for Thursday. Back in the doctors office, the young lady doctor/trainee(?), and two nurses were waiting for me with a table of sterile surgical instruments to do a "punch" biopsy. The is a fun little procedure where they take a real tiny "cookie cutter" device and take a plug of your tissue. They numbed the area first, so I really did not feel anything, but that whole "cookie cutter" analogy really bothered me since I do like to bake cutout cookies! The real doctor then came back in and he did not give me much hope of this being "just a nasty infection", but it would be a couple of days before the results came back. On Wednesday, I talked to my clinical trial nurse, and the results were on her computer, so she confirmed the additional cancer. We did go ahead with the chemotherapy yesterday. My appointment was at 7:15am, but because of the specific timings required by the clinical trial, we did not actually get started until 9am, and this was scheduled for 7 hours from start to finish. My oncologist finally got over to see me just as we were finishing up a little after 4pm, and we talked about the new diagnosis again. This is being treated as a metastisis of my original disease, so the treatment remains the same. Had we gotten rid of the original cancer, this might have been considered as a new cancer because of its inflammatory nature. Fortunately, I'm still on anti-depressants, so these little setbacks don't send me to a bad place mentally, and I'm very hopeful that this new treatment, along with the positive thoughts and prayers from all my friends and family, will do a number on the cancer, both old and new. Wishing you all a blessed Christmas. Love, .....Sue ************************ Friends, I had my third dose of chemotherapy yesterday for the clinical trial that I'm participating in. At this point it's hard to say whether this is having any lasting effect on reducing the tumors, but I do know that "superboob" had a great reduction in redness and swelling from the morning by 6pm. I seem to faintly recall this effect from the previous dose, but obviously it didn't last. Maybe 3rd times the charm. This chemo is having bizarre effects on my ability to sleep. The first week, I was wired and wide awake until 5am. The second week, I went to bed at 6pm and didn't wake until 8am. Last night, I was asleep by 7pm and I woke up about 10:30pm...at the moment, I'm wide awake. Hopefully I'll be able to get back to sleep before too long. I had a couple more scans last week. The breast MRI showed a very large tumor in addition to the inflamation. The bone scan shows disease progression. Not good news, but I'm hopeful that the current treatment will reverse this. Looking forward to my personal cure in the New Year, and I wish all of you a happy & safe New Years' Eve and a happy, healthy and love-filled 2006! Love, .....Sue ************************ Happy 2006! Well, I met with the doctor last Monday, prior to my 4th dose of chemo, and we talked about the test results from the week before. In her mind, it was nothing unexpected nor overly concerning, so I felt better about that. The rash of lumps seem to be shrinking slightly, but we will not do any more scans until the 8th week of the trial. Since this seems to be working, I'll be continuing on the trial. The main concern right now is the 4 inch tumor in my right breast. Can't say for sure whether this chemo is having any effect on that one, so the doctor wants to watch this so it doesn't get out of control. I'm feeling pretty good, but taking more pain medication and sleeping more....those two seem to go hand-in-hand. I don't seem to be having any major side effects from the chemo, and no sign of my hair falling out yet. I'll post another update after the results of the next scan which will be at the end of the month or early Feb. Please continue to keep me in your prayers. Love, .....Sue ************************ Well, I did get my test results a couple of weeks ago, but with work, treatment, and sleep requirements, I've just not had time to post the updates. Unfortunately, the test results after two months on the Clinical Tri
Funeral arrangements will be at Deliberato-Golubski Funeral Home in Garfield Hts., OH. Recurrence & Treatment Updates by Date:
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Subject: Sue's Recovery Update 2.1: Recurrence & Treatment
Posted: Saturday, May 7, 2005 7:00 PM
Subject: Sue's Recovery Update 2.2: Hospitalized Again
Posted: Monday, May 16, 2005 11:00 AM
Subject: Sue's Recovery Update 2.3: Out of the Hospital
Posted: Thursday, May 19, 2005 9:30 PM
Subject: Sue's Recovery Update v2.4: The Study Drug
Posted: Monday, May 30, 2005 10:00 PM
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Memorial Day 2005 - Lyons, Ohio
Sue and Jack "pie" 
Subject: Sue's Recovery Update v2.5: Doctor's Visit
Posted: Thursday, June 9, 2005 10:00 PM
Subject: Sue's Recovery Update v2.6: Trying Another Therapy
Posted: Monday, June 27, 2005 12:30 PM
Subject: Sue's Recovery Update v2.7: Another Cycle
Posted: Friday, July 15, 2005 6:00 AM
Subject: Sue's Recovery Update v2.8: GOOD NEWS!!!
Posted: Friday, July 28, 2005 9:00 PM
Subject: Sue's Recovery Update v2.9: Another Stay in the Hospital Posted: Friday, August 16, 2005 12:00 PM
Subject: Sue's Recovery Update v2.10: Back to Work
Posted: Saturday, September 10, 2005 9:30 PM
Subject: Sue's Recovery Update v2.11: Overall Improvement
Posted: Saturday, October 1, 2005 2:30 PM
Subject: Sue's Recovery Update v2.12: Looking for a Miracle
Posted: Saturday, October 13, 2005 9:30 PM
Subject: Sue's Recovery Update v2.13: Back to the Drawing Board Posted: Saturday, November 12, 2005 2:00 PM
Subject: Sue's Recovery Update v2.14: Still Waiting
Posted: Saturday, December 4, 2005 9:00 PM
Subject: Sue's Recovery Update v2.15: Clinical Trial
Posted: Friday, December 16, 2005 4:00 AM
Subject: Sue's Recovery Update v2.16: Clinical Trial, week 3
Posted: Friday, December 30, 2005 1:00 AM
Subject: Sue's Recovery Update v2.17: Hanging in there!
Posted: Sunday, January 15, 2006 4:00 PM
Subject: Sue's Recovery Update v2.18: Off the Trial, on to new Chemotherapy
Posted: Saturday, February 25, 2006 6:30am