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Lily's Movie | Melissa's Story | ||
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Melissa’s StoryAs many of you know, I have been fighting brain cancer. Here’s a run-down of what has transpired since this all began right through what’s current… September 8, 2003 – Went to my internal medicine doctor for a physical because I was having trouble with dizziness, headaches and strange “out-of-body” episodes that we’ve subsequently determined were small seizures. My Dr. ordered an MRI just to be sure that there was nothing wrong with my noodle. September 11, 2003 – Had an MRI. Later that night we received a call from my internal medicine Dr. saying that the MRI had picked up several lesions in my brain. He told me I needed to see a neurosurgeon right away and that they’d set up an appointment for me with someone they knew. This launched us into getting opinions, second opinions and third opinions from the top neurosurgeons in the area – and it turns out that Chicago is the place to be if you have a brain tumor. We saw a guy in a private practice who had privileges at Rush North Shore. He suggested we check into a guy at Northwestern Memorial and a guy at Chicago Institute for Neurology and Neuroresearch (CINN). We also saw a couple Dr’s at Evanston Northwestern Hospital’s (ENH) Kellogg Cancer Center. It is ENH Kellogg and Dr. Vick that we wound up going forward with. September 17, 2003 – Met with Dr. Vick’s partner for neurosurgery, Dr. Rosenblatt, and scheduled a stereotactic biopsy for September 26, 2003. This procedure is a very low-risk one where they go in and get several samples of the tumor to determine what kind it is, what grade, etc. The results enable the doctors to determine a treatment plan. Had I wound up having this surgery, I would have been awake the whole time but drugged so I wouldn’t have cared. September 20/21, 2003 – Over the course of this weekend, I developed excruciating headaches that I couldn’t relieve with anything. September 22, 2003 – Went to the hospital as soon as they opened the doors of the cancer center. They started me on IV steroids to manage the pain which was almost certainly due to swelling in my brain from the tumor. Once they got me stable, they’d do an MRI to confirm that was what was going on. As of today, Owen was officially done nursing because of the medicines they needed to put me on. The MRI showed that in the last two weeks the angry part of the tumor almost doubled in size and what used to be probable low-grade glioma was now most likely high-grade/malignant. While that was a bitter pill to swallow, the tumor actually did us a couple favors. By growing so rapidly it pushed the normal brain tissue aside rather than becoming intermingled. That, in turn, makes it much easier to remove every bit of the dangerous part of the tumor. Also, the nasty part of the tumor was located in the right frontal lobe, forward of the area of the brain that controls motor function. Being located in this kind of generic part of the brain means that post-op I would only have to recover from the surgical procedure, not re-learn names, motor skills or anything like that (although Seth felt he could probably benefit from a clean slate). These new facts precluded the stereotaxic biopsy procedure, and Dr. Rosenblatt set things in motion for a craniotomy on Friday, September 26, 2003 instead. As opposed to the biopsy, this means a larger incision, a slightly longer stay in the hospital and the removal of as much of the tumor as can be taken endangering me. Once the part of the tumor they can take is removed, neuropathologists will examine it to determine exactly what it is and that will determine the course of treatment. The hope is that the portion of the tumor that will remain in the brain will be of a type that will respond well to drugs, chemo and/or radiation therapy, all of which can be done on an outpatient basis, thereby returning Melissa to normal life as soon as possible. September 24, 2003 – Since they got the swelling under control and I no longer needed steroids through an IV (I could take them in pill form), the Dr’s decided I could go home today (Wednesday) and come back for the surgery on Friday morning. September 25, 2003 – Kissed the kids a thousand times, cried a lot, kissed Seth a thousand times, cried some more, enjoyed the day. September 26, 2003 – Went to the hospital for the craniotomy at 9am. The next piece of this tale is really from Seth’s perspective because I wasn’t with it yet. You’ll note his humor… The procedure itself went off without a hitch. It was supposed to be a three to four hour procedure (an educated guess by the neurosurgeon), but they were closing after only three. Anyway, the surgeon said he was able to remove everything on the right side. He didn't clarify, but he meant everything tumor-related, not the whole right side of her brain. So all that's left is the part of the tumor that crosses over to the left side, which, so far, is behaving itself. In fact, though clearly visible two weeks ago, I couldn't see that part of the tumor on Melissa's MRI yesterday. That doesn't mean it's not there, but it does mean when they add the contrast dye (nasty cancerous cells photograph distinctly different from normal brain tissue when they add dye) the remainder of the tumor is indistinguishable from normal brain tissue. After the procedure Melissa went to ICU, where she stayed until later that day when she moved to a regular room. They had to give a little narcotic for pain, but not too much since narcotics tend to hinder the nurses’ ability to test Melissa's mental functioning – about which we have nothing to worry, by the way. In fact, in any given group she still is the sharpest one in the room. For example, she wasn't allowed to drink big gulps of water so we had to swab her mouth with what looked like spongecicles. And in the ICU she needed a little help with that, still being weak from surgery. She whispered to me "Will you please swab my gums, Seth?" I said "Sure honey" and set about the task. After I finished and said "How's that?" Melissa replied "Uh, those were my lips, not my gums". Another example: The nurse came in to ask how high a dose of anti-seizure medicine Melissa was on. I had no idea and the nurse seemed confused when I said I had no idea. The nurse and I looked at each other, puzzled, and tried to figure out how we could find out. That's when Melissa whispered "Can't you just look it up on my discharge orders from a couple of days ago?" Thank God Melissa's here or none of the rest of us could get our own shoes tied. So Melissa will be in the hospital until Tuesday, most likely. On Monday or Tuesday the pathology results will come back and we will learn what kind of cancer we're dealing with. The doctors are likely to tell us we are fighting a fairly scary type of cancer (just a guess on my part), but in the end that will be another one of those details that Melissa and I need not worry about. No matter what it is, the only acceptable outcome is beating it altogether, so any information other than "congratulations, you've beaten it" is a little like a mosquito in our ear. Of course Melissa will disagree with me and want to know as much or more than the doctors on this, but I suppose that makes us a good team for this challenge. Just one more thing. we were expecting to see Melissa pretty beat up after surgery. I thought we would have to catch our breath and really steel ourselves before going into her room in the ICU. Not so. Melissa looks like it's a normal day and you just walked in on her taking a nap. She's nice and warm, rosy cheeks. She looks so good I find myself wondering why she's wearing the funny white hat. I mean, how can someone look so good you have to remind yourself they just had brain surgery? I tell you, she's going to give all the other patients a bad name. September 30, 2003 –My team of neuro-oncologists met with me to share results from the pathology on the part of tumor that was removed. It was more promising than I think anyone had hoped. I have grade four anaplastic oligodendroglioma. It's fast-growing and nasty but tends to respond better to chemo and radiation than astrocytoma does (this or glioblastoma multiforme is what we suspected we were dealing with given the rapid degradation and the way things looked inside my head when the surgeons were in there). This type of tumor also occasionally has a genetic deletion that can improve your odds by more than 17 fold. They sent my cells off to Cleveland for the study to determine whether I was in that lucky group. It turned out I am not. October 1, 2003 – I returned home from the hospital today. October 8, 2003 – Went to see Dr. Rosenblatt (surgeon) to have the staples removed from the surgical site. We were all impressed with how well I had already healed. October 10, 2003 – Began radiation and chemotherapy. I also returned to work full-time today. Radiation treatments: Treatment ran 5 days/week for approximately 7 weeks with the last treatment on November 25 (that was a nice pre-Turkey day celebration). The appointments were pretty quick (15 minutes or so) so I was able to have them without screwing up work schedules much. I lost a bunch more hair (ho hum) and fatigue started to really get me around week 6 (They told me it would be bad from week 3 to the end. Guess I showed them!) Chemo treatments: Chemo for my type of cancer when combined with radiation is taken orally 7 days/week. I went for weekly blood tests to monitor my white and red cell counts because they can be adversely affected by the drug (Temodar). They put me on an anti-nausea medicine to make it all easier on my system but it turned out that I didn’t really need it to keep the stuff down so I stopped taking it. This round of chemo ended the day before Thanksgiving along with the radiation. November 3, 2003 – It was around this time that my hair started falling out in fistfuls. I began to look like Gallagher because I still had longish hair in the back at the base of my head and for about an inch around the sides but the rest was essentially gone. Hats and scarves are my best friends and I’m starting to have quite a nice collection of them by now. November 25, 2003 – I had my last radiation treatment and took my last chemo. Hurray!! Right now I'm in that 3-week resting period where the doctors need to give my body a break before doing a baseline MRI to see if we can assess how well what we've done so far has worked and what we're going to need to do next. I'm scheduled for that baseline MRI on Wednesday, December 17 and have an appointment with Dr. Vick (my neuro-oncologist) that very afternoon to discuss results. While on hiatus from the more traditional medical treatments, I continue to focus on getting healthy through nutrition and positive attitude. I'm also working with the doctors to decrease my dose of steroids. They're really causing some yucky side effects now (muscular weakness and serious pain in my joints). Decreasing the dose is a long, slow process that requires more patience than I sometimes think I have but it'll come with time. November 26, 2003 – My parents hosted Thanksgiving at their house and, with Seth’s family there were 18 of us! It was an awesome celebration of life! December 15, 2003 – I had my first serious seizure. It began with my arms shaking and grew from there till I was unconscious. I gather it lasted several minutes and scared the heck out of Seth and Lily. Seth called an ambulance and they took me to Highland Park Hospital's ER to get checked out. The hospital admitted me and watched me until about 4 pm Tuesday when they released me. We're not sure why it happened exactly but know now that we need to be extra vigilant about my anti-seizure medication. I’m on a second one now for double the protection. December 17, 2003 – I went for my MRI/doctor day. Here's the good news: • The surgical site in my brain used to be a hole about the size of an egg. That has shrunk to about the size of a nickel. Plus, it looks normal rather than tumor-like now and it appears that the radiation has cooked any microscopic cells that might have been lingering. • The parts of the tumor that they weren't able to touch through surgery are definitely not larger and might even be considered slightly smaller than prior to the chemo/radiation. Plus, they continue to look low-grade (a tremendous relief after the seizure and after actually watching the other half of the tumor get horrendous.) • There is no swelling in my brain right now so we can continue stepping down the steroids that are making me feel so crummy. • Dr. Vick feels really good about how things are going. He said this is as good as we could possibly have expected short of a miracle, though Seth still thinks I could will myself one of those. January 5, 2004 – I began a protocol of chemotherapy that is about two times stronger than the last one. However, this time it was taken over the course of 5 days. Then there’s a 3-week rest period followed by 5 more days of chemo, followed by 3 weeks off, etc. They’ll do blood tests throughout to monitor platelets and white cells. I’ll also have an MRI every three months to check in on what my brain looks like and evaluate if this is a course we'll continue. February, 2004 – Chemo this month went better than last month despite an even higher dose of the drug. I had another significant seizure on the 19th but didn’t go to the hospital this time. Fortunately I was able to feel it coming on, call Seth and get myself into a safe position on the floor before passing out. It took a couple days to feel normal again after this one. We increased one of my anti-seizure medicines. In other news, I was laid off my job (please know that it had absolutely nothing to do with my medical condition) and have begun an intensive search for a new position. While I wait for something full-time to come through I’m doing some freelance work for my old company among others and enjoying the unexpected bonus time with the kids. Owen turned one this month! March, 2004 – Nothing significant to report. I’m having what we think are very small seizures that make the left side of my body tingle but it doesn’t go any further than that. So we’ve increased the anti-seizure medicine again. Happily, I’ve been able to continue stepping down the steroids and am beginning to see hints of my cheekbones again. Still no job but a couple of promising leads. Things in the job market are very slow right now. April, 2004 – Chemo was much harder this month than last and we’re not sure why. I’m enjoying the garden and its regular gifts of new life. Every day there’s something new to see. As part of my plan to be healthy, I’ve begun walking regularly. Suddenly I started having knee pain which I was more than willing to ignore rather than having to go see yet another Dr. but then I noticed a lump in my thigh so I made an appointment to see someone. The immediate good news is that I don’t have any tears requiring surgery. The less-good news is that they see evidence of avasulcular necrosis – caused by steroids – which is probably what’s causing the pain and we don’t yet know what the lump is all about. Update: I went for additional scans to rule out the possibility that the lump was a tumor. It's not! Still no job but those leads are still promising. Lily turned five this month! I feel very positive about how things have gone so far and have been amazed by how it’s possible to feel very lucky to be in the situation I’m in – I’m doing radically better than so many other brain tumor patients I’ve met. I cannot thank everyone enough for your support, love, prayer and devotion to our family. You all are so much a part of the strength that is carrying me safely through this challenge! May 20, 2004 – Hello everyone! I'm writing with what I feel is tremendously good news. Today was my first MRI in 3 months to check in on how my noodle is doing. Turns out, things are better than anyone could have dreamed to expect. There continues to be healing of the surgical site on the right side of my brain, the part of the tumor running through the corpus callosum is roughly the same as the scan 3 months ago and the part of the tumor on the left side of my brain Dr. Vick describes as slightly smaller than 3 months ago. So, for the first time ever, Dr. Vick was willing to say that I'm responding well to the chemotherapy. He shared with us that his star patient on the same chemotherapy has been on it successfully for over 5 years -- a relief to me because I thought most people could only be on this drug for a year before it became toxic to their systems. So, I'm about to begin my sixth cycle of chemo and I do it with renewed vigor and patience for its side effects. I'll increase my steroid dosage a little to help me through it but then go back down afterwards. The anti-seizure medicines are going to stay the same for the time being but we're looking into switching to a combination that doesn't make me so shaky. (I'm having trouble writing, typing and doing fine motor tasks right now.) In other news, I still haven't found a new job. I think people worry about employing someone with brain cancer. I can't say I blame them but do miss the normalcy of shuffling off to work each day. I think it keeps me sharp. So, anyone out there that needs or knows someone in need of a hard working Account Supervisor, let me know. Otherwise, we're looking forward to this weekend's events (check out www.ritter-thompson.com if you haven't already) and further down the line than that, to a summer full of fun with the kids. The next MRI - and probably the next official update - will be in late August. July 7, 2004 – It's been a while because I have been waiting for pieces to fall into place before writing anything down. So as not to put anyone through unnecessary grief, I'm fine. We've had a little scare though. Shortly after my last update, I began to have more seizure activity and Dr. Vick began me on a gradual switch over to a new anticonvulsant to see if we could gain better control. In the meantime, lots of other things were also going on...the unbelievable benefit, a phenomenal vacation, summer break for the kids, the list goes on and on. I also began to experience more difficulty with speech, memory, walking and blistering headaches that were requiring two naps a day and lots of Ibuprofen but still not quite cutting it. So, last week I went in to pick up chemo on Thursday and was told that I couldn't with all these other things going on. I'd have to have an MRI first. I had that done today. All is well with my brain. They rocketed up my steroid to 16mg just in case it was swelling from the tumor but are letting me go right back down now that we know it isn't. Apparently I've had a kind of toxic reaction to the new anticonvulsant, and that's what was causing all my symptoms that seemed like tumor growth-related symptoms. So, I am being taken immediately off the bad one and put on back on the old one that didn't give me terrific coverage until my body simmers down again. Then we'll start looking for something better again. Next round of chemo starts Monday. Next MRI is in August (unless there's a good reason to do it before then). October 7, 2004 – It's unusual lately for me to send out 2 updates in such close proximity. Today I had a regularly scheduled MRI check-up and visit with Dr. Vick. The MRI took the same amount of time as always but felt like it took a century -- mostly because it seemed much louder than usual. After a long wait, we (Seth was with me) saw Dr. Vick who told us that the MRI looked good to him. There are a couple spots that look a little larger but he's not really concerned about them. And if he's not worried, I'm not either. We talked about adjusting my anti-seizure medicines further to try to overcome the extreme fatigue that I've been battling and have put a plan into action. Good thoughts on that. We talked about the continued headaches and agreed that we'll talk about that once we've completed the transition in anti-seizure meds. We talked about the shakiness in my hands and the weakness in my right leg and agreed that this too might just go away with the change in medicine. We talked about my failing veins and agreed that I will have a port placed next month. From what I understand, it's a relatively simple procedure and will be fairly unobtrusive physically. November 3, 2004 – Here’s a little update on what’s going on these days. Sorry it's so long. My Mom and I just returned from a trip to Boston. We were there from Thursday night until Monday night for a Brain Cancer symposium on Saturday. We rode the T into town from the hotel on Friday and enjoyed the city. On our way there we met a very nice couple from Kenosha, WI. They have a teenage son with brain cancer. Getting to know them was good for all of us. We agreed to have dinner with each other that night. While in the city we saw the Gardner Museum and had a wonderful lunch at the Boston MFA. We returned to the hotel for the conference orientation. Dinner at Skipjack’s was awesome! I’ve decided that seafood is really, really good. Saturday was the conference. I learned many interesting things and met lots of other people with the same cancer I have – most of them doing really well. The scientists talked (WAY too fast!) about new therapies that they’re working on to help people like us. Things like combining gene therapy with drug therapies; convection enhanced delivery of chemo (this uses catheters directly into the tumor to deliver chemo); and something called RSR plus oxygen therapy that I didn’t understand at all. I went to a session on seizures because I’m still having trouble with that. They talked about 3 different types of seizures that I’d never understood before. Now I’ll be able to talk more clearly with my doctors about what I’m experiencing. Apparently they call it a seizure disorder in cancer patients but its actually epilepsy. I guess they figure that we have enough to worry about without telling us we have epilepsy. Then I attended a break out session for the oligodendroglioma cancer patients where I met many more wonderful people. There I found out that certain people – those with that genetic deletion we’d hoped I had – experience an actual decrease in the size of their tumor through Temodar chemotherapy. I took this as a very hopeful sign that soon they’ll come up with a way to provide the same beneficial action for people like me. They talked about side effects of everything and coping strategies. I found out that it’s likely late effects of radiation causing me ear trouble (I might need to get ear tubes put in) and making me feel like I’m getting less and less smart. While there were aspects of the conference that weren’t very helpful or what I expected, it was a really good thing to attend. Sunday we spent another glorious day in Boston. We went on a trolley tour of the entire city seeing so many things I couldn’t even tell you about them. We did a lot of walking around too. We ended the day with a drink and calamari at Legal Seafood. Monday we rented a car and Mom drove us to Cape May where we stood on the ocean and did a little shopping. The funny thing was that most of the towns we visited had basically closed down the day before for the season. It is so beautiful out there! The hills, the golden colors, the rivers and the wildlife were all a treasure to behold. So that was our trip. I have vowed to make it to every state in the US before I pass and I can now put down Massachusetts. I plan to take my time going through more states. I went to the hospital today for a history and physical (basically blood work and a bunch of questions about my health and that of my family) because I’m having outpatient surgery at Evanston Hospital Monday to place a port. The port will make it much easier to draw blood and to administer drugs as well as contrast dye when I have to have MRIs. I’m not worried about this at all. It should make many things much easier for me and the people who have to find veins in me. I go in at about 7:30 am and will be home that evening. It should be quite simple and I should be feeling pretty good the next day. I’m having another minor outpatient surgery on the morning of November 19th. This one will be at Lake Forest Hospital. Once again I should be home that evening but it’ll be a little longer before I feel up to snuff. We’re still monkeying with medicines. I won’t bore anyone with the details of that. In the midst of all this, I’ll be on chemo from Wednesday the 10th through Sunday the 14th. That’s it and that’s plenty. Thinking of all of you with much love. November 21, 2004 – Remember how I said that I was going in to get a port placed on Monday the 8th? Well, I got to the hospital, they had me in a gown and ready to go until they noticed I was coughing. I had been on antibiotics and fever free since Friday the 5th so I didn’t think anything of it. Apparently, this was a big deal for them. They sent me home and told me I could try again Thursday. I rallied for Thursday – this time at Highland Park Hospital. This surgery went well and though I was in a lot of pain, I’m really glad to have the port. They used it for the next surgery. The next surgery was the ablation. We did that at Lake Forest Hospital. It took less time to feel better from this than the port placement and I can’t even express what a relief it was not to have three techs searching my arm for a usable vein. Chemo was no worse than usual. Not sure if I’ve mentioned this yet or not but I’ve been having simple seizures on my left side that are a cause of concern – not only because they’re left-sided but because they tend to last quite a while. I’m going in for an MRI Tuesday and meet with Dr. Vick on Wednesday. Here’s hoping it’s nothing! December 1, 2004 – It was something. The damn tumor is back as big and mean as before. I visited with a new doctor today at U of C to get a 2nd opinion. This guy was great! Plus he thinks the world of my team at ENH. His recommendation was virtually the same as theirs which is good because I'm on the schedule for another brain surgery with the ENH team this Friday. Whoo! What a whirlwind tour this has been. I haven't much in the way of details yet but am truly looking forward to feeling better! I'm hoping to be up and out of the hospital in as little as a week though I think the docs think that's maybe a little ambitious. Well, for a few days anyway, Seth will keep you all up to date. December 6, 2004 – Seth here; just got home from the hospital and wanted to let you all know how Melissa's doing. She went to Evanston Northwestern Hospital this morning for a craniotomy, which is the same procedure she had done last year. The biggest difference this time is that once they removed the tumor (as much as they could) they placed Gliadel chemo wafers in the surgery site to attack the remainder of the tumor more directly than they could with regular chemo. Melissa has reached her life-long threshold for whole-head radiation, so that wasn't an option this time. Though they couldn't remove quite as much of the tumor as last time — I think because of the way it grew back but am not positive — the surgery was successful and uneventful. Post-op Melissa had several seizures, and though very difficult to watch for people who love her, were not so bad that she couldn't communicate with me while they were happening. And they never grew into grand mal seizures which, of course, was a great relief. In terms of cognitive function and motor skills she is doing great. The surgery site is, like last time, just forward of the motor skills area in her brain, so because of swelling due to surgery they expected her to have some initial trouble with moving her hands, arms, legs and feet. Even though she was still shaking off the anesthesia in the time I was in ICU with her she was able to do some pretty dexterous stuff. And she was quicker than I was when asked the day of the week and the date, which may not come as much of a surprise. Though I desperately hate that Melissa has had to undergo this ordeal and surgery again, I am encouraged by how well she is doing so soon after surgery and how hard she is fighting to be at 100% as soon as possible. She is not being told (well, they did check it once) to test her motor skills, but she is continually drilling herself on touching her nose (that sounds much easier than it is after brain surgery) and when she gets it she doesn't rest; she does it again. Faster. Same with tapping out a beat by touching her thumb to each finger on that hand (for both hands). I can't wait to get back there tomorrow to see how she's improved since tonight and she is anxious to get out of ICU so Lily and Owen can spend time with her. Thank you all so much for your thoughts, prayers, help with the kids, meals, the house, everything. Your generosity and support is overwhelming. December 10, 2004 – Seth again. Well, you've all prayed me out of a job. This will be my last update authoring because MELISSA IS ALREADY HOME FROM THE HOSPITAL! I told her that, once again, she has made it look like the rest of us just aren't trying. She won't be playing tag with the kids or anything for a while, but she is walking around (without the walker the docs said she would need). If it's like last time, she'll be kind of laid up at home for a few weeks and then a few weeks of getting around but at a slightly slower pace, and then it's two hours of kick the can every night! Or maybe she'll skip the kicking of said can. It's too early to tell. We don't yet have a chemo protocol to follow, but there will be one eventually. I'm sure they're thinking (correctly) that it would be cruel to load chemo onto someone recovering from brain surgery. Anyway, I'm late to go welcome her home. So, this is Seth saying Thank you all very much; I return you now to your regularly-scheduled update author and I hope never to be your updater again (not that I haven't enjoyed it, it's just....) January 3, 2005 – I hope you all had a wonderful holiday season!! I have had several friends call to ask how things are going because there hasn't been an update in a while. Basically, there's nothing to report right now. I'm healing well from the surgery and the trouble I was having with my left side is much better. I have decided not to wear hats or waste any time worrying about how people might react to seeing my bald, scarred head. It's so much better than stressing about it was last time. I went through a few days of major joint pain as I came down on the steroids but figured out how to deal with it (last time I couldn't get it under control). The only real news to report is that I got sick just after Christmas with some kind of infection that came with a fever and with the fever came 2 grand mal seizures. This knocked me out of celebrating my birthday - I guess we can do that anytime though. I'm meeting with Dr. Vick on the 12th and we'll discuss next steps at that point. There are quite a few chemo options to consider. I'll update you all again after I understand the options better. Until then, enjoy a happy and healthy New Year. January 13, 2005 – I saw Dr. Vick yesterday to talk through chemo options. It looks like my only option (I don't qualify for any clinical trials) is something called CCNU. This is the oral equivalent to the Gliadel wafers melting in my brain right now. As I mentioned, it's oral so I don't have to go to the hospital to get transfused. I'll be taking it for one day every 6 weeks along with a super high dose daily of Tamoxifen (a drug some of you may recognize as one used to prevent recurrent breast cancer. In my case, the hope is that the drug will keep blood supply from being reestablished to the tumors). Apparently the CCNU protocol is quite hard on your system, depleting your blood cells enough that most people can only tolerate 6-8 months of therapy. Then, I gather that you can take a rest to allow your body to recuperate and resume therapy again - assuming it was working in the first place. There's usually need for transfusions and they monitor your blood counts very carefully so I'll be needing to go for draws on a weekly basis (at least in the beginning). Fortunately, it looks like they can set the blood work up in Highland Park so we don't have to trek to Evanston each time. It was amusing to check in with the front desk this time because we had to enter the new insurance information. I've earned the distinction at the office (which has dozens of doctors and probably thousands of patients) of having the highest co-pay they've ever seen. Not a distinction I'm particularly excited about. The only other tricky thing going on right now is that insurance has denied coverage for the chemo. We're appealing it and think we'll get it covered in the end so I'm not all that worried. It seems like most things like this work themselves out. January 13, 2005 – Part 2 – Just wanted to let everyone know that we can stop being ticked with the insurance company. The appeal went through this afternoon and they approved it. Chemo starts Monday -- wish me luck! PS. Many of you have asked what the co-pay is. The answer is $50.00. Yipes! January 25, 2005 – I have a little bit of news to share. Around Jan. 12 I began having some mild headaches again. At the time I was able to knock them out with Tylenol. They got worse to the point where Tylenol was no longer working and I was starting to feel incapacitated by them so I put a call in to Dr. Vick. Suspecting brain swelling, they pushed up my steroids -- a lot. We tried to cut back almost immediately but the headache returned so up we went again. Through a week of this fiddling I had no seizures which was a good sign but still they wanted me to have an urgent MRI yesterday. Again I'm thanking my lucky stars for having a port to deal with the entire blood draw and infusion of MRI contrast dye process. I really think that's the worst of it. The truly wonderful news is that the MRI is stable compared to my last one and it looks like the surgical site is healing up very well. The bad news is that we have no idea why I'm having these blinding headaches. Oh well. At least they're not tumor-related! February 3 – Update 1– I'm writing briefly to let you know that I've been having crushing headaches again since Saturday. I've been put back on morphine and that isn't helping. They're at a loss for a reason why my head hurts this much so they are going to do some testing today. I'll be having a spinal tap at about 1 this afternoon. I'm scared about it and would appreciate calming thoughts aimed my way around that time. I'll update more when I know more. February 3 – Update 2 – I have just returned from the hospital where the spinal tap was much easier than I expected. Though I was there for nearly four hours we came home not knowing anything new and hope to get some test results on Monday. I will keep you posted. February 5, 2005 – Owen turned 2 today! February 10, 2005 – Seth here. As you know, Melissa has been suffering debilitating headaches for the last few weeks that have kept her bed-ridden most of that time. That's the bad news. Well, that and the flu bug she caught. The good news is two-fold. First, my sister Rachel moved in with us last weekend to help take care of Lily and Owen. The timing of this move couldn't have been more fortuitous since Melissa herself needed as much attention as the kids did. Now the kids are able to get outside and run around like kids are supposed to and Melissa can still get the rest she needs. Plus, it was an excuse to buy cool walkie talkies and pretend that we're truckers. A lot of "Breaker 1-9" going on in our house nowadays. Second, Melissa was admitted to Evanston Hospital (that doesn't seem good, but wait, I'm not finished yet) so that the doctors could keep a closer eye on her and figure out what's causing these horrible headaches. My money's on the combination of the insane number of pills she's on, all of which list headaches as a prevalent side effect; but I'm just a musician. Medical advice from musicians is not covered under our current insurance plan. Anyway, they've got her on something now that has her pain down from a 9 (scale of 10) to a 5. Still more than most of us could handle, but for her a tremendous relief. They plan to keep her there at least until Monday, at which time they will hopefully have pinpointed and eradicated the cause of the headaches. Once the headaches are controlled (I'm saying this for my own benefit as much as anyone else's) it's important to remember that Melissa is doing quite well. The last MRI looked as good as it could, and the promise of a new garden should pull her out of the winter doldrums that she has suffered as long as I've known her. She does love that garden. I just like dirt. February 19, 2005 – Melissa finally came home from the hospital Thursday afternoon. The headaches seem now to come and go and when they are present are not quite as bad as before, but we've finally stumped Dr. Vick. Hats off to Dr. Vick, though; it took him a year and a half to be stumped. In all the years I've known Melissa, that's usually one of the first things out of a doctor's mouth, regardless of how long they've practiced. "Wow, I've only ever read about that in textbooks; I've never actually seen it in person." The fact that it took Dr. Vick so long is as ringing an endorsement for him as is possible, I think. Since they were stumped, they did an additional MRI when Melissa was in the hospital, and here is where the news starts to sour. The MRI showed some possible enhancement at the surgery site, and it definitely showed swelling in the brain. The bright side of this is that the enhancement at the surgery site could be nothing more than the MRI took a cross-section at a slightly different position, which can make things appear to have changed in size when in fact that is not the case. The sudden swelling of the brain could also be due to the fact that the MRI from January had 24 mg of steroids involved (steroids keep swelling down) and last week's had only 2. The dark side of this is that Melissa and I have both been struggling separately (and silently until a week or so ago) with the gut feeling that the struggle was not going to last much longer. Melissa's intuition is also telling her that her current troubles are tumor growth-related. Unfortunately for all of us, in the 15 years I have known Melissa, her intuitive track record is near 100%. Obviously, we desperately hope we are wrong and our intuition is thrown off by fear. In two weeks (March 3), they will do another MRI to see if the increase in steroids (she's up to 40mg now) fixed the swelling and to see if there is any change in the tumor. If the tumor has come back, we then are faced with a very painful decision. Melissa's left arm doesn't really work right now (her whole left side isn't working greatly). They think that is due to a grand mal seizure she had in the hospital. Because of that, the doctors think there is a possibility that if they operate again she could come out paralyzed. That's painful option #1. Painful option #2 is to do nothing, send Melissa home, make sure she is not in pain, and wait. Hopefully, our intuition is wrong and we are just scared. Hopefully the steroids will fix the swelling and the tumor is, in fact, behaving. Until then, we're doing a lot of crying, singing (for those who've never heard Melissa sing, not even cancer could take away her beautiful voice), hoping and praying. I wish this update could be more upbeat and full of the usual humor you may have come to expect from these updates. Maybe the next one will be. February 20, 2005 – Owen, Lily and I (Melissa) were baptized today. March 3, 2005 – Well, it is with considerable surprise that I "pen" this email. Having gone expecting the worst, I just returned from my appointment with Dr. Vick. The MRI revealed that the higher dose of steroids (I'm on the maximum dosage currently) has reversed the major brain swelling I was experiencing just 2 weeks ago, and the tumor has not grown back in the surgery site or increased in size at the inoperable site. March 19, 2005 - My foot was only badly bruised. It took until just the other day to get better because of the steroids (I'm still working my way down on those). Chemo last week went okay. Only minimal nausea and lots of tiredness but I'm not complaining. I'm scheduled for my next MRI and appointment with Dr. Vick on the 18th of April. April 12, 2005 - Lily turned six! She had a rock star birthday party on Sunday the 16th complete with pink hair, lots of makeup and good friends. April 22, 2005 - Happy Earth Day! I received the test results from the PET scan and it shows that the tumor is actively growing. PET scans by the way are way more tolerable than MRIs. If you ever have to make a choice between them, go for the PET. Useless advice for most of you I hope. Anyway, I'll be meeting with Annette (my neuro-oncology nurse and the woman who gets me through some very tough times) on Monday morning to get started on Thalidomide chemotherapy. Keep your fingers crossed that insurance doesn't have a problem with it. On Tuesday I'll be meeting with the same radiation oncologist I had last go around. This time he's in Highland Park though so it'll be much more convenient to take treatment. They want to do IMRT (intensity-modulated radiation therapy). IMRT is an advanced mode of high-precision radiotherapy that utilizes computer-controlled x-ray accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. The radiation dose is designed to conform to the three-dimensional (3-D) shape of the tumor by modulating— or controlling — the intensity of the radiation beam to focus a higher radiation dose to the tumor while minimizing radiation exposure of surrounding normal tissues. Treatment is carefully planned using 3-D CT images of the patient in conjunction with computerized dose calculations to determine the dose intensity pattern that will best conform to the tumor shape. Typically, combinations of several intensity-modulated fields coming from different beam directions produce a custom tailored radiation dose that maximizes tumor dose while also protecting adjacent normal tissues. They tell me that I'll probably need about 14 doses and that it won't cause any significant cognitive damage. If I hear anything differently after meeting with the doctors next week, I'll let you know. April 25, 2005 - I met with Annette (my neuro-oncology nurse) to do the paperwork and get the tests done to get my Thalidomide chemotherapy going. There was an insane amount of signing and oath taking because the drug is so dangerous (remember what it did to all those babies?). Fortunately, it might have the same stunting effect on my tumor. The only side effects I'm likely to experience are fatigue, constipation and there's a very small possibility of irreversible nerve damage in the hands and feet. There shouldn't be one bit of nausea (it used to be prescribed to pregnant women to combat morning sickness -- consequently the huge problem with birth defects.) April 26, 2005 - I saw Dr. LaCombe (my radiologist from last time will lead the battle again -- this time from Highland Park). I feel like I received more non-information than information though. These Drs. really don't ever talk concretely. I think that’s mostly because everything varies so much from person to person. He thinks doing radiation in combination with the chemo could be extra beneficial though taxing on me because a major side effect of both is fatigue. Others side effects of IMRT include brain swelling (treated with more steroids), short-term memory loss, hair loss and dry scalp. The fortunate thing is that the area they have to irradiate isn't really responsible for much so they can spare me neurological deficits for the most part. Here's where things get murky. Apparently I'll be going for anywhere between 18 - 20 treatments (not sure how they decide how many to go with). They run every day of the week except on weekends and should take about 15 minutes each time -- most of that being set-up rather than treatment. When asked how we know if the tumor is growing out of control, Dr. LaCombe said headaches and increased left-sided weakness. Not sure what to make of that given that I already have both. I go in for the preliminary work (scans, etc.) the physicists will use to plan the treatment which should begin by the middle of next week. They won't be doing any scans during treatment which scares me quite a bit given how fast my tumors tend to grow but I understand that the treatment would so skew the results as to make them unreadable. The goal of all this is isn't to shrink the tumor (that, we were told, will most asssuredly not happen) but really to keep me stable a little longer – buying time for us to hopefully add another weapon to the arsenal. June 5, 2005 - I've been meaning to do this for at least a week now. The latest in my world is that my pain is under much better control thanks to the efforts of the Palliative CareCenter & Hospice of the North Shore. They were even able to help after I took a major fall the other day that landed me in the ER for 5 hours. I was released with a diagnosis of multiple contusions (AND HOW). I have a sprained wrist and am scraped and black & blue all over. This all resulted from my walker getting stuck on a piece of bad sidewalk over by Lily's school. Apparently the city already knew it to be a problem but they didn't have it marked or anything so it sucks to be me and find out the hard way. June 12, 2005 – So, as it turns out, my arm is broken and I now have a very hot, itchy periwinkle blue with silver sparkles (for Lily's amusement) cast that can come off in about 3.5 weeks. My bruises are beginning to fade and feel better. I'm still unstable enough that I'm not walking much and dI have enough edema in my ankles that I'm supposed to keep my feet up as much as possible. In other news, I'm tremendously proud to announce that my brother, Chris, and his wife, Lauren graduated college this weekend. The ceremony, though very long was especially poignant because it's the last for Barat College. -- When there’s new information to report, we generally send out a mass e-mail to |
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