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 Trial showed that the disease was still progressing. Maybe not enough to get me kicked off the trial, but I personally did not feel that I was getting any benefit from the trial, so I asked to be removed from it. So, about a week and a half ago, I started on two new "standard treatment" drugs, Gemzar and Carboplatin. This will also be weekly treatments like the trial was, but will take less than half of a day as opposed to the full day that I was spending on the trial. It will also be 3 weeks on and 1 week off, so I'll get a little recovery time in between. I'm already feeling optomistic about the new treatment, but it'll be a while before we do any new scans. Please continue to keep me in your prayers. Love, .....Sue ************************ After just 4 weeks on this new chemotherapy, there is already evidence that it is working - the lump under my arm, the one on the back of my neck, and the 4 inch breast tumor all are getting smaller. I saw the doctor last week, and she agreed with my assessment. I'll have my 6th dose of this stuff next Thursday and then get a week off. This is a 3-week-on, 1-week-off treatment, and is standard chemotherapy and not a clinical trial. They'll be checking some tumor marker for me every 4th week. The last time I saw the number, it was in the 300+ range. Normal is under 30, so I'm hopeful that this number will be going down with the chemo doing it's magic. Still working full time and trying to keep my energy up for my evenings with Jack. Please continue to keep me in your prayers. Love, .....Sue ************************ Today I had my 9th treatment of Gemczar & Carboplatin, and am ready for a week off! Although this seems to be working, between my 6th & 7th treatment (the off week), I noticed some growth in my largest tumor, so scheduled another CT Scan and an appointment with the doctor. As usual, she concurred with my assessment, and decided to increase the dose of Gemczar. The results of the CT scan were mixed. Some areas stable, some reduced, some additonal growth. My tumor marker, a blood test taken at week 7, was at 188, down from 331. (That's good news!) The Gemczar apparently affects my white cells, and the Carboplatin affects my red cells. Today my red cells were very low, so they only gave me half the dose of Carboplatin. If my count would get much lower, they'd give me a transfusion. Fortunately, I've now got two weeks to recover, so hopefully I'll be able to avoid this. It does explain why I've been so tired lately, though. In general, I'm optomistic on the current treatment, the diseased area is looking better, and I'm still just on minimal pain medication. We're in the process of getting me off the steroids, so hopefully my sleep will get better soon. I'm very tired, but when I go to bed, I lie awake for hours -- so I'm really not sure whether it's the low blood counts or steroids that are my problem right now. Please ignore that study that says prayer doesn't improve recovery times and continue to keep me in your prayers. Love, .....Sue ************************ Yesterday I had my 12th treatment of Gemczar & Carboplatin, and again, am ready for a week off! With this cycle of treatment, my white cells, red cells, hemaglobin and platelets are all low, so they've started giving me a shot each week to boost my red cells/hemaglobin. (These are two separate numbers on my records, but the nurses talk about these interchangeably.) As of yesterday's treatment, this shot is apparently working, because my hemaglobin was up and out of the range for which they would want to give me a transfusion. My tumor marker, at week 9 was 168.4, down from 188. (That's good news!) I may have more to report in two weeks when I see the doctor again. Right now, there is a possibility (probability) that I will have 2-3 weeks of radiation, but surgery at this point has been ruled out. I'll try to post a little more timely after my doctor visit, along with the tumor marker numbers. Keep up the prayers & positive thoughts, and I'll do the same! Love, .....Sue ************************ After 15 treatments of Gemzar & Carboplatin, I met with the doctor on Thursday and we've determined that this treatment is no longer providing me with any benefit. We're going to take this opportunity to do the Radiation treatments, since these cannot be done concurrent with chemotherapy. Although I was disappointed that another treatment option is no longer working, I have been wanting to do the radiation for some time, because the chemo wasn't reducing the tumor fast enough for me. I got a call from my nurse on Friday...she wanted to know if I could go to the hospital on Friday to get my port removed. Since the tumor grew under the port, and they can't do radiation with the port in the way, it has to come out and will need some time to heal before radiation. So, like a good girl, I promptly went over for this "minor" outpatient procedure. Unfortunately, the tumor had grown around the port and was hugging it tightly. It took about an hour and 2 doctors to free the device - a lot more cutting & coaxing & numbing medication that they expected to need. I was popping percocet like candy last night and have slept all but a few hours since I got home yesterday at 4:30. On Wednesday, I'll be meeting with the Radiologist to find out what the treatment plan will be. In the meantime, my Oncologist is plotting what we'll do next as chemotherapy so we can get right back to that as soon as I recover from radiation. Keep up the prayers & positive thoughts, and I'll do the same! Love, .....Sue ************************ Another hospitalization for me... I slept most of the weekend after my port removal surgery, but did make it to work on Monday. Curled up in my chair when I got home and dozed off and on until I realized that the chills I had probably meant another fever. Since I hadn't had recent chemotherapy and didn't have any signs of an infection, the doctor just prescribed a couple of antibiotics and told me to call back if the temperature spiked, or anything got worse. Made it in to work again on Tuesday, but after an hour, decided I felt too crappy to stay. Went home and napped the day away. When I woke up about 4pm, the nodes under my arm and in my neck were very tender and swollen. This got me a trip to the emergency room, with a 4 hour wait to get evaluated, an hour to decide to admit me, and then a few more hours to wait for a room. Fortunately, they gave me good drugs once they decided to admit me, so I didn't really care how long it took to get a room. I was subjected to the usual hospital treatments - waking me up for bloodwork, weigh-ins, shift change.... A CT scan showed that my cancer is continuing to grow, so my oncologist decided that this is not a good time to stop the systematic treatment for radiation. She got me scheduled to have a new port implanted in my arm, and put me on the calendar to begin chemotherapy on Monday, even though she wasn't quite sure what she was going to put me on. The new chemotherapy is every 3 weeks, and is Epirubicin and 5FU. They give me Ativan (one of my personal favorites!) before this chemo, so I'll need a driver for this stuff. I slept most of the day for about a week after treatment. Not sure if that was from the treatment, or still after-effects of my surgeries and hospitalization. This week I've done a little better, getting out for short walks to pick berries and getting a few small things done around the house. I haven't gone back to work since my hospitalization, and it's not likely that I'll go back while still on chemotherapy. I can't really tell at this point whether the treatment is working, but I'll post an update after my next Dr. visit/treatment on July 10th. Thanks for your continued prayers & positive thoughts. Love, .....Sue ************************ I saw the doctor yesterday and she's thinking that this treatment is working. I really was not sure, but I thought the breast was a bit smaller, although there have been no significant changes to the rash. I told her that I had been considering increasing my pain medication to go back on the long-acting morphine, but was hopeful that this treatment would work and I don't want to keep going back on and off this drug. She agreed with me and then asked about my pain. Mostly it's a problem with my left arm ... numbness, tingling, itching, shooting pains, burning sensation. She said she knew exactly what it was - something (possibly a tumor) pressing against a nerve and causing the pains. She prescribed a medication that I take twice a day, and after just two doses, already my arm is better and I am no longer considering upping my pain medication. She also gave me something extra for nausea, which I had experienced after the first treatment. Today, I had more energy than I've had in weeks. I'll blame that on the steroids that I got with my treatment. I expect to crash by tomorrow, but hopefully I'll recover quickly from this treatment. My hair began falling out again on Thursday, and Friday & Saturday it was falling out even faster and really annoying me with those hairs tickling my neck. We were staying with my sister Ann for the weekend, so I asked my brother-in-law, Tim, if he had a clipper and would he cut my hair off? So he gave me the same cut that he has. My hairbrush is now a "lint roller" to remove the loose hairs. On Sunday, I stopped out to the guard base for a new (retired) ID Card, and of course, I look like "Mr. Clean" on that picture. Off to the beach for a much needed vacation on Saturday. The sun & the sea did me a world of good last year, and I'm hoping for the same this year. Love, .....Sue ************************ Sorry for the late update... Vacation didn't go quite as planned. I ended up hospitalized with a temperature of 104 while in North Carolina. The temperature was caused by an extremely low white cell count. Fortunately, they only kept me in for 2 days, with my insistence that the best medicine for me would be to listen to Jack's laughter as he played in the pool. They sent me off with antibiotics, but I had to return to the hospital (an hour drive each way) for the next couple of days to get the shots to boost my white cells. doctor decided to change things up with my chemo, eliminating one of the drugs (5FU) and increasing the other (Epirubicin). She also prescribed antibiotics which I am taking to prevent the fever/infection that comes with the low white cell count. At the moment, I'm not feeling that this treatment is doing much, but I'll be having a new CT Scan before my next treatment. I'm not sure why, but I slept through my last treatment (they had to keep waking me up to confirm my name and birthdate with each of the drugs) and didn't have my usual energy burst on the day after treatment. I basically slept for four days following treatment, and finally got off my butt on Friday. Fortunately, I was functional for the weekend and doing ok today. Thanks for your continued prayers & positive thoughts. Love, .....Sue ************************ Well, I went to the doctor on Monday, and she was not happy with the current treatment and decided to move me on to the next one. Unfortunately, she wanted to get started right away, but could not get me on the outpatient schedule for this week. Since this is a lengthy regimen, she was able to get me in for inpatient treatment, so I've spent the last 3 days in the hospital. The new treatments are Navelbine and Ifosfamide. The Navelbine is quick and will be two Mondays on and one off. The Ifosfamide is three days in a row, every third week for about 8 hours, but I will be able to get this as outpatient treatment in the future. So far, this treatment is better than the last one in terms of side effects. I also am thinking that this might actually be working for me! I am back on my long acting pain medication, and am having a problem with numbness & tingling in my left arm/hand. Probably due to a tumor pressing on a nerve. Hopefully, the medication for this problem will start working, or it's going to take me forever to type my updates! Keep up the continued prayers & positive thoughts. Love, .....Sue ************************ I've had my second course of Ifosfamide, and will complete the second course of Navelbine next Monday. So far it appears to be only minor improvement in the size of my breast tumor, but when I met with my doctor last week, she thought it was worth sticking with this treatment for now. We've upped my pain medication again, and that seems to be working for everything except the numbness and pain in my arm. I'll be seeing the doctor again next Tuesday, so hopefully I'll get some good news then, or at least I'll find out what clinical trials are now available to me. Keep up the continued prayers (we're praying for a miracle) & positive thoughts. Love, .....Sue ************************ I met with my doctor on Tuesday, and she feels that although I'm not showing significant improvement, that the lymph nodes under my arm are smaller. We're going to continue on with another cycle of the current treatment, and then I'll be scheduled for scans upon completion of the cycle. I'll see the doctor again on October 17th, to review the results of my scan and determine whether I continue on with this treatment, or move on to a clinical trial. At the present time, there are no trials for which I would be eligible at the Clinic, so we'd be looking for something either locally at another medical facility, of farther away. Heading off to the beach for a couple of days next week for some much needed sunshine. Love, .....Sue ************************ Friends, family & all - Greg, Jack & I had a great time on vacation and did our share to relieve the beach of our fair share of shells. I've identified no less than 32 different varieties in the collection that we brought home, but nothing bigger than 3-4" in size. Jack was more interested in the pool than the beach, so that held us back a little, but I wouldn't have wanted to spend the time without him. Can't wait to do that again - hopefully we'll get the chance when he's a little bigger & less scared of the ocean. Once we got home, I had some new symptoms to have checked out related to the nerve problems in my left arm. In addition to my numbness, pain, and inability to grip/hold anything in my left hand, I had also been experiencing problems in coming up with words and general confusion. I was scheduled for a brain scan on the evening of October 2nd which confirmed progression of the cancer to my brain. So on Tuesday, I had a follow up appointment with my Oncologist. By Tuesday morning, my confusion had worsened, and I was falling. Most of what happened for the next two days I can only report what I have been told happened. In my Tuesday appointment, the doctor noted my condition and advised that "most people" choose not to do anything more at that point. She also told my mother that she knew me well enough to say that I would not choose to give up as long as there was anything to be done. Fortunately, she had another trick up her sleeve. My confusion, ability to communicate, & ability to stand unassisted progressively worsened. At some point in the day, they wanted to reach Greg to get his approval for the procedure, but I could not remember (or communicate) his work phone number. Without getting Greg's input/approval, the doctor went ahead with my procedure, which was a Lumbar Puncture (Spinal Tap) to withdraw fluid as well as to administer Chemotherapy directly to my brain. Based on my worsening condition, I was then admitted to the hospital. I do not recall much of Wed, 10/3, but late in the day they ran an EEG on me. This test consisted of gluing devices to my head and asking me questions that any 5-year-old could answer. The glue smelled like rubber cement, and then I couldn't answer the questions. (today's date, what year is it, where are you, husband's name) Mom and Greg spent several hours on Wed. in meetings with the Social Worker and with my Oncologist, having my medical status fully explained and talking about what progression of the disease to expect; talking about Medical Power of Attorney and Living Will; and starting to make arrangements for home healthcare. I believe that by the end of day on Wed, I had eaten no food since Monday, and had not been given any pain medication even though I was highly agitated and in pain. My Mom threatened to break a few legs and finally got some pain medication for me, and before Greg left that night, I was able to sit still for a few minutes. By Thursday morning I was on the schedule for pain medication every 6 hours, but with this type of medication, they will only give it to you if you request it. I was doing much better, but this was still not enough pain medication for me - the pain kept me from sleeping and I spent a lot of time pacing the floors. While the doctor was through on rounds, I was able to convince the team that 6 hours was not frequent enough, so this was increased to every 3 hours - again, you have to specifically request this. About 11am, I called Greg at work and he actually did not believe it was me. He asked to talk to my Mom to confirm that it really was me. When he came in after work, he had come up with the "Lazarus" nickname for me. On Friday, Saturday & Sunday, not a whole lot going on. There was talk of my getting "whole brain radiation" - initially just one treatment, but then this was changed to 12-14 daily treatments. I had also thought that they were going to wait to determine whether they thought the spinal/chemo was working and then it seemed that they had decided to wait a couple of weeks until the chemo leaves my body. They actually created a mold/mask of my head to use for the radiation and that was what I was expecting when I left the hospital on Monday morning. On Monday afternoon, I got a call from the nurse at my Oncologist's office. After reviewing the notes from my hospitalization, the Dr. felt that it was the spinal/chemo that made the difference in my mental status and she wanted to continue on with this (every 2 weeks for this treatment) before trying the radiation. It seems that everything changes by the minute, but for now this is what I'm expecting for what's going on in my brain. Related to the Chemo that I was on prior to my cancer spreading to my brain, I'll be having new scans on the 16th, and see my doctor on the 17th to review the results of the scans. This will determine whether I continue on with this treatment, or move on to a clinical trial (which has yet to be found). Keep up the continued prayers for a miracle & positive thoughts. I truly appreciate all of the visitors who came to see me in the hospital, and would welcome your visits (please call first to make sure that I'm home, and not off at another test or doctor's appt) or calls now that I'm home. Love, .....Sue ************************ Friends, family & all - thanks for thinking of us. Sue received her last radiation treatment 10/30 and will no longer receive any chemo. My mother-in-law has been with us since 10/2. God Bless her, or else I would have had to go on Short Term leave to take care of Sue. Sue lost 25 pounds last month, and pretty much can't use her left arm. In home hospice starts today. We don't let her get out of her chair without an escort anymore, because she's taken some bad spills trying to be independent. For the last two weekends while Sue's been up to traveling, we've taken her home to Toledo. Plan is to have her back in Toledo for the week of Thanksgiving. For all Toledoans wanting to see her over the Thankgiving week, call ahead (419-726-xxxx) to see if she's up for visitors. Jack knows something is up, but not aware of what's going to eventually happen. Luckily for me, Sue has a large family and Jack has a lot of cousins to play with. .....Greg
Funeral arrangements will be at Deliberato-Golubski Funeral Home in Garfield Hts., OH. Recurrence & Treatment Updates by Date:
************************
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
Subject: Sue's Recovery Update v2.19: New Chemotherapy seems to be working
Posted: Saturday, March 25, 2006 10:30pm
Subject: Sue's Recovery Update v2.20: NINE DOWN, ??? TO GO: Posted: Thursday, April 27, 2006 10:00pm
Subject: Sue's Recovery Update v2.21: A Brief Update
Posted: Friday, May 26, 2006 2:30am
Subject: Sue's Recovery Update v2.22: Moving on to Radiation
Posted: Saturday, June 10, 2006 1:30pm
Subject: Sue's Recovery Update v2.23: Change of Plans
Posted: Saturday, June 30, 2006 11:30pm
Subject: Sue's Recovery Update v2.24: Cautiosly Optomistic
Posted: Tuesday, July 11, 2006 9:30pm
OBX July 2006
Sue and Jack clowning it up Sue, Jack, and Greg - Ferry to Ocracoke Island
Thanks for all the new notes on my guestbook, and for your continued prayers & positive thoughts.
Subject: Sue's Recovery Update v2.25: This Chemo is Kicking my Butt Posted: Monday, August 7, 2006 10:30am 
08/06 Family Day at Toledo ANGB 08/07 Mary "Little Grandma" 08/11 Jarett Trendel visits Cleveland
Jack and Sue Szklarz Birthday Sue, Jack, Jarett at the zoo
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Subject: Sue's Recovery Update v2.26: New Chemo Again...
Posted: Thursday, August 24, 2006 12:30pm
Subject: Sue's Recovery Update v2.27: Not much to report...
Posted: Thursday, September 14, 2006 12:30pm
Subject: Sue's Recovery Update v2.28: Showing a little improvement... Posted: Friday, September 22, 2006 10:30am
Sanibel Island, Florida ...... 09/26 - 09/30 Our last vacation together! 
Sue, Jack, and Greg poolside Sue - "Shellhound"
Keep up the continued prayers for a miracle & positive thoughts.
Subject: Sue's Recovery Update v2.29: My new nickname is "Lazarus"...
Posted: Monday, October 9, 2006 10:00pm
Subject: Sue's Recovery Update v2.30: Sue starts hospice today. Posted: Monday, November 6, 2006 10:00am
10/21 - Sue's last Birthday celebration (44th)
Jack ready to help blow out the candles!
It pains me to look at this picture, Sue would not like the way she looked in this picture.
This is not how I remember Sue. She was the girl full of life and fun to be with.
However I need to post this as part of my healing process - Greg
Sue resting with Jack at Mom's in Toledo
That's about it! Keep the prayers and good thoughts coming Sue's way.
