At 9:10PM on Sunday, February 1, 2009, our mom, wife, daughter, sister, niece, friend, teacher, mentor, Kendra Joann Kahn, took her last breath. She was surrounded by family and friends and left us quietly and peacefully. Her battle has finally come to an end. She will be loved and missed until the end of our days and she will never be forgotten.
My dad, sisters, brother and I will hold a remembrance day in her honor next Saturday, February 7 at my parents' house in Dripping Springs. We would love to see and meet anyone who's life she has touched. This will be a time to share stories and memories or even to get to know her for the first time. Please forward this to anyone I have missed who you feel might like to know. We would like everyone to feel free to stop by anytime after 1:00PM on Saturday and stay for as long as you like. Of course we will do our best to help make arrangements for our out of town friends and family.
I would like to express again the gratitude we feel toward all of you for sharing your love, support, and strength through this painful time. I would also like to repeat our request that, in lieu of flowers, you make a donation to Hospice Austin's Christopher House where my mom was cared for and kept comfortable for her final days. Throughout this experience we have met some of the kindest, most caring people with what I consider to be one of the most emotionally draining jobs that exists. We are grateful to them all for what they do and for who they are, as we are to all of you, our friends and family.
I was afraid I wasn't going to be able to make the trip because of this radiation proctitis that I am currently suffering -- and I mean suffering! But with some changes in my meds, I seem to be doing better. I'm taking Imodium to slow things down and I'll wear adult diapers on the plane if I have to but I'm going to the Cancer Treatment Center of America in Zion, Illinois, and find out their opinion!!!
I'll update this thread when I have any news and to let you know what the place is like. I found some old DU threads on the subject in this forum but none of us had actually been, though some had friends and family who had gone. So I'll be the official DU Cancer Support Group reporter.
I'm not expecting miracles but I am hopeful that their approach will work better for me. For example, if my Austin oncologist had taken my side effects seriously, I could have started treatment for the proctitis weeks ago and it wouldn't have developed to the ulcer stage. All of this misery could have been avoided. But it wasn't cancer so she wasn't interested, and in fact, she jumped to the conclusion that it was cancer when she finally felt something inside. Fortunately, I just knew she was wrong and didn't suffer needlessly while we awaited the biopsy results. There was no reason she had to bring up lesions since we were going to find out the next day anyway. That's just typical of her "bedside manners."
If I don't find what I'm looking for at CTCA, I'll keep looking. All I want is a doctor who is willing to believe that I can beat this or at least extend my time and who cares about my quality of life as I go through this. I don't think that's too much to ask.
I haven't had surgery since it had spread. I had radiation therapy (twelve total) in March and April followed by chemotherapy beginning in April. It was delayed while I got a second opinion at M.D. Anderson. I just finished my ninth round (three days every three weeks) and get new CT scans tomorrow. Previous scans have shown marked reduction in the tumors. Once they're gone, I can stop chemo. Surgery might still be in my future once the tumors are gone from my lungs.
I got a lot of support, information, and positive feedback by posting on DU. Many of those posts are saved to my journal.
One thing I learned about the information online -- most of the studies and statistics about cancer do not pertain to you! That's because most studies are conducted on people for whom conventional treatments are not working AND they were started a few years ago. The results are almost always much better after the initial treatment and new therapies are being developed all the time. My radiological oncologist told me that no one has cancer that is identical to mine because my cancer is made of my DNA. He also said that while my cancer may be incurable, that doesn't mean it is untreatable. He compared it to diabetes, which is also considered incurable. I later read an excellent article in the New York Times that pointed out that there is a whole new attitude about managing cancer, sometimes for many years. Apparently, Elizabeth Edwards' doctor made the same comparison between cancer and diabetes.
Forkboy is right that the toughest time for me so far was in the beginning. Even then, I continued to teach, missing very few classes, because teaching helped keep my mind off of it. I also took some sleeping pills prescribed by my doctor for the first few weeks so that I wouldn't lay awake worrying. I haven't taken them in months. It's hard to believe but I have become used to having this diagnosis and going through the treatment. It's just a part of my life right now but fortunately, it doesn't dominate my life. I told my husband this weekend on our little getaway to Niagara Falls that I just don't believe that this is going to kill me. It just doesn't seem real in that regard. It's how I choose to live my life right now, believing that I will overcome this. I don't know my future but I wouldn't want to live my life believing anything else.
I hope you have nothing but good news from now on!
Stage IV uterine or cervical cancer (undifferentiated cells so we'll never know for sure) that had spread to my lungs by the time it was diagnosed in March of this year. It was considered inoperable due to the metastasis. I had radiation therapy followed by eight rounds (three days every three weeks) of chemotherapy and the scans show remarkable reduction in the tumors. After the next round in two weeks, I'll have more scans to help decide how much longer with the chemo. I could have internal radiation and/or surgery in my future.
The cowboy boot in my signature signifies my attitude toward the tumors.
I was diagnosed with Stage IV cervical or uterine cancer (we'll never know which) with metastases to my lungs on March 2 of this year. I was told it is inoperable and incurable but have come to learn that, at least for now, it is manageable. I had radiation therapy for the first month while I, too, sought a second opinion at M.D. Anderson. This delayed the onset of chemotherapy and that worried me but I was assured that cancer doesn't spread that quickly. There is no test for my cancer so we note progress through various scans. I've had several chest x-rays, CT scans, MRIs, and a PET scan. What I have seen since treatment began is a great reduction in the size and number of tumors. My doctor considers me some kind of miracle!
A diagnosis of cancer is NOT a death sentence. We don't know any more about when or how we're going to die than we did before the diagnosis. Treatments have improved greatly! While I can't say that I'm crazy about chemotherapy, it isn't nearly as bad as I thought it would be. I've had seven rounds and begin my eighth on Wednesday. Each round for me consists of a full day of infusion plus about two hours each on the second and third days. I do this every three weeks. I take Emend, an anti-nausea drug, on those three days plus I take compazine as needed for the next three or four days. So far, I've had only two brief waves of nausea and that was after the first round because I didn't start the compazine as quickly as I should have. Since then, I've had no nausea or vomiting. I admit that I feel weak and tired for the next few days but I'm not bedridden. I just take it easy but I could go to the movies or out to dinner if I wanted to. I've been able to teach at community college throughout these treatments with just a couple of days off last spring and summer. I only teach on Tuesdays and Thursdays this semester so I don't need any days off. I've been going to acupuncture to help me with the chemo side-effects and I really believe that the treatments and herbs are helping (and I'm generally a skeptic about such things.)
I get cisplatin and topotcan which have thinned my hair but I'm not bald. However, I got a cute wig (I get lots of compliments!) to wear in public most of the time. I've also gained about 20 pounds, partly due to the steroids that I'm given during chemo, partly due to being 53 and menopausal, and mostly due to the attitude that, damn it!, I've got cancer and I'm eating those Oreos!
I recommend that you attend a support group, mostly so that you can be around other survivors. I found it very inspiring to see how many people are living with cancer, sometimes even several recurrences, for years after their initial diagnosis. I'm sure you're learning as much as you can and that's a good thing. But remember when you come across studies that they are generally old (two or three years is very old when it comes to cancer research and treatments) and the participants are not newly-diagnosed like you -- they are generally people for whom a clinical trial is their best hope because conventional treatments are no longer working. So the results can sound worse than they really are.
Surround yourself with positive people! I'm not religious but I accept all prayers and positive thoughts on my behalf. A dear DU friend, eleny, suggested using a cowboy boot stomping out the tumors as a visualization and, being from Texas, I thought that was a great idea. So I bought myself my first-ever pair of boots which I wear frequently and whenever I find myself feeling a little scared, I imagine those boots kicking and stomping the crap out of the tumors. I also suggest getting a prescription for a sleeping pill if you find it hard to sleep. Someone here at DU suggested that to me and they helped me so much. I never need them now. Believe it or not, you actually get used to living with cancer.
You can read my journal for more info about what I've been through since March. I won't try to tell you that there is nothing to worry about because no one knows. But I decided early on that, whatever time I have left, I'm not going to live it expecting to die. I expect to live as long as I can and as well as I can. I send out email updates to my family and friends and I've been lucky enough to be reminded how much I am loved. There are Buddhists praying for me in China and Jews praying for me in Israel, not to mention believers and nonbelievers wishing me the best in many places in between. It means a lot to me and helps me stay strong mentally and therefore, physically. And that's the key -- to stay strong enough to withstand the treatments.
Please feel free to ask questions -- by PM, if you'd prefer -- as you go through this. You became a cancer survivor the moment you got your diagnosis. My understanding is that there are new, highly-effective treatments for your type of cancer so you have every reason to be optimistic. I hate that you're having to go through this but you CAN survive this! I wish you the best!
I had CT and MRI scans on Tuesday and the results were excellent. All tumors showed remarkable shrinkage or disappeared completely. I saw the doctor today and we've decided that I will get a PET scan in two weeks to make sure that the remaining spots showing up on the scans of my lungs truly are cancer and not scar tissue. The PET will also help us see what, if anything, remains of the tumor in my pelvis. I'll meet with the doctor the following Friday, August 29, to discuss options, which could include more chemotherapy or surgery or internal radiation.
I'm excited about getting a break from chemotherapy -- at least six whole weeks off! And next week, we're going on our "planes, trains, and automobiles" vacation from Austin to California to Denver and back.
I saw the physician's assistant yesterday. She talked to the radiologist and was able to confirm that my latest C-T scans of my lungs and pelvis show -- I believe the medical term she used was "way smaller" tumors. The tumor in my uterus is so small that the C-T scan results are within normal parameters. The next scan will be an MRI.
Because the cancer has been so responsive to the chemo, we have decided to keep going with it for six rounds. I've had two rounds so far and start my third round tomorrow.
I've been doing well with the chemo so I don't mind too much that I'll be having more of it since it's working so well. I think acupuncture and Chinese herbs are helping me with side effects, as well as the amazing anti-nausea and cell-building drugs.
My results are so unexpected that the medical professionals at the cancer center are giddy with excitement. I think I'm trying too hard not to get my hopes up and I should celebrate this news more. I could use your help! Thanks!
I saw the doctor today, two weeks after my first round of chemo. I had a chest x-ray on Tuesday and she came in beaming with the results -- no visible signs of cancer in my lungs! It's working! Not only that, my cervix looks normal and the tumor in my uterus continues to shrink. We actually started discussing what we're going to do when I first the next two rounds of chemo. I realize that cancer can go away and come back but this is the best possible step in the right direction!
After we shared a few tears of happiness, we shared a good laugh. There has been some disagreement about whether I have a carcinoma (MD Anderson's opinion) or a mixed carcinoma/sarcoma (Austin's opinion.) So my doctor says, "Well, I don't care if it's named George or Herman, the chemo is working!" So I commented that I think I'll name it George because I sure hate him enough and that makes it easy to visualize kicking the crap out of it. My doctor and nurse burst into laughter while we made a few more jokes at George's expense. Finally, I said, "Let's get rid of both Georges in 2008!"
Yesterday I was examined for the first time since I had radiation by the doctor who saw me before radiation, so the first time to measure the effects of radiation. My doctor was VERY pleased that the tumor has shrunk. She must have said three or four times how impressed she was. Then she said, "If that thing keeps getting smaller, we might even be able to take it." (Previously, it was considered inoperable.) Then she said, "If we can get that chemo to get rid of the cancer in your lungs, you just might be one of the people who beats this thing!" This is the most optimistic she has been since this all started. My radiological oncologist practically jumped up and down when he heard this news.
I had a fantastic first day of chemo today -- never thought I'd be saying that -- but it was "almost" like spending the day at a spa. I had people seeing to my every need, chatting with me, and the IV and various drugs were painless. A man whose wife was getting chemo brought me a Quiznos sandwich when he was getting one for his wife! A volunteer who is a three-year cancer survivor brought me juice and crackers and stayed and chatted with me from time to time, which I really enjoyed. My nurse was fantastic -- he just got his masters degree and has become a nurse practitioner -- went to A&M and UT. I'm actually looking forward to the next two sessions.
Tonight I'm feeling great! I know that it can take a day or two, or more, for the side effects to kick in but I'm enjoying feeling good right now.
I have a prescription for Emend nauseau for today, tomorrow, and Friday. I also have a prescription for another drug for nausea as needed, but I understand that that can also make me sleepy. So I'm investigating the idea of making some marijuana cookies to have on hand to help with nausea with making me sleepy (or stoned!) so that I can teach my classes on Mondays and Wednesdays. I know that ginger can also help with nausea.
So do y'all have any suggestions or advice? And feel free to a kick to my cancer's ass (just don't miss! )
I met with my MD Anderson doctor yesterday morning and later, she consulted by phone with my Austin doctor and we decided on which course of chemotherapy I'll start. I'm supposed to finish radiation this week, if I can squeeze the appointments in, and then on Wednesday, Thursday, and Friday, I'll do the chemo -- all day on Wednesday and half days the other two days -- plus a shot on Saturday to help my white cell count. I'll do this every three weeks for three sessions and then three weeks after the last session, I'll go back to MD Anderson for a C-T scan to see if the chemo has stopped the growth of the tumors or shrank them.
The course we've chosen -- cisplatin and topotekan -- is supposed to have fewer side effects and I may not lose my hair. However, there is some disagreement among the pathologists on whether I have a mixed tumor (carcinoma and sarcoma) or just a carcinoma. I'll have a chest x-ray every three weeks. If the tumors aren't responding, they'll switch me to taxol (and I will lose my hair.)
A friend is taking over my Tuesday-Thursday class. I'm hopeful that I will still be able to teach the other three classes that meet on Monday and Wednesday, reducing my workload to just two days a week. We just have five weeks left in the semester.
I have to admit, I've been feeling a little down this week -- my husband has been sick and I've just been sitting around at my mother's house all week. It was good to visit with her but there was nothing really to take my mind off of cancer and I'm afraid I'm coming down with whatever my husband had. Anyway, it's good to be home!
I was hoping I'd come away from this week feeling more optimistic but it will be several weeks before we know if the cancer will respond to the chemo so it's hard not to let fear creep in. Thanks for any positive vibes you can send my way!
I had my appointment at MD Anderson today. The doctor reviewed my records and examined me. She wants to consult further with the pathologist to try to determine which kind of cancer I have, since that will affect my treatment. She will present my case to the team of specialists on Thursday and I will meet with her again on Friday to discuss my options. We were going to stay at a hotel near the medical center but since I won't be needing further tests, I came back to my mother's house about an hour away to spend the week and my husband went back to Austin to get in a couple of days work. He'll come back for the doctor's appointment and to take me home Friday.
The people at MDA were great! I feel very good about entrusting my care to them. But no more news until Friday!
Once I know for sure what kind of chemotherapy I'll be getting (I go to MD Anderson next Tuesday) I'll know for sure if I will lose my hair. I have long blond hair. I've heard two recommendations:
1. Get it cut short so that it won't be as noticeable as it falls out, then shave the rest. Seems like I would need a wig and/or scarves ready in advance.
2. Get it shaved off before it starts falling out as it may be more empowering to do it myself than to wait for the chemo to do it.
I'll be getting a wig or two and it's better to have them fitted with no hair. Also, MD Anderson sells wigs so I could get it done while I'm down there. I may also use scarves and hats -- I've seen some beautiful bald ladies when I go for radiation therapy -- but I don't know if I can go bald in public all in one step. Losing my hair wasn't that important to me when I first got the diagnosis but I think it will get harder as it gets closer.
Two cool things happened yesterday:
1. Yesterday was my last day of classes before I go to MD Anderson. A student brought me some flowers in a vase shaped like a cowboy boot! She said it was actually a souvenir mug from a rodeo.
2. Yesterday was also my last radiation treatment for this round (one more round in two weeks, depending on what they say at MDA.) My radiological oncologist, who knew nothing about my cowboy boots kickin' and stompin' the cancer, gave me a plaque engraved with a John Wayne quote that says, "Courage is being scared to death - but saddling up anyway." Now, this is Texas and maybe he gives these to all his patients but it sure has special meaning for me (even though I'm not really a John Wayne fan. ) When I told him about my boots, he said that gave him chills.
I've already been through the ringer this morning! I got a call from MD Anderson saying I needed a referral from my PCP and I may have to reschedule my appointment if I don't get it before I get there. After several phone calls to my PCP, Blue Cross Blue Shield of Texas, and MD Anderson, I have a referral number. Fortunately, my GYN oncologist had already requested the referral from my PCP so it was just a matter of getting the right doctor's name on it. (At least, that's the latest I've heard -- I'm waiting to hear back from MDA.) It's a good thing I was off today so that I had time to drop everything for an hour and make a bunch of panicky phone calls!
Finally, I spilled water on my cellphone! I just got it last week! It was just a quick splash -- I hope it recovers. Since I'm always either teaching or traveling from campus to campus, I can't make it through this experience without it!
I had told three adjuncts with whom I share an office that I have an appointment at MD Anderson next week. When I was leaving, one man was left and he started out telling me that his wife, who has diabetes, has had a transplant -- he was offering it as an example of how there can be positive outcomes to serious medical conditions. But then he asked me if I was a "believer" and I said no, I'm not religious. He was absolutely incredulous! "But what did you do on Easter?" I answered that I watched basketball.
Anyway, I made it clear that I respect his beliefs, that I was raised to be a Christian -- in fact, my mother has been a lay minister in the Disciples of Christ church for the last ten years or so -- but it just didn't take, and that I'm 52 years old and I don't think I'm going to change my mind at this point. I told him that I truly appreciate all of the offers of prayers that I have received but he said that I must consider those folks liars! How could people who genuinely care about me as another human being, who send a prayer on my behalf because they believe that it will help me, and who never asked me what my beliefs are because my beliefs don't affect their beliefs -- how could they be liars?! There's a Jew in Israel who has his synagogue praying for me -- if I was a Christian, should I tell him forget it?
Most people I know are secure enough in their own beliefs that they don't feel the need to try convince others that they are right and others are wrong. I would never try to convince a believer to become an atheist. I believe whatever brings a person peace and strength and a clear vision of how to live his or her life is what is best for that person.
Frankly, I've only had two incidents of negative feedback since I found out three weeks ago that I have cancer. One was a gal who asked me how long I have to live and then there's this guy! It makes me appreciate all of you "strangers" here on DU all the more. I know that many -- probably the majority -- of you are believers, yet not one of you tried to impose your beliefs on me. You all wished me the best -- via prayers or positive vibes -- without demanding to know whether I shared your beliefs. I appreciate you all so much!
An online friend on another message board wrote me some new lyrics to "These Boots Are Made for Walking," and added my new cowboy boots to the graphic. He's an American teacher living in Israel. He even asked me my mother's first name so that he could have his synagogue pray for me.
No matter how down you get, remember that there are wonderful people everywhere!
There hasn't been much to report the last few weeks unless I just wanted to rant! I was diagnosed with a uterine sarcoma on March 3 based on a biopsy read by a local pathologist, as well as CT-scans and MRIs, and began radiation treatment immediately. I was told I'd be able to get into MD Anderson by that Friday, the 7th or the following Monday, the 10th, so we did not start chemo. Well, no call came and when I called my oncologist the following week, I was told she was out of town for the week. Also, the pathologist at MD Anderson asked for my slides and got them on the 13th so there was no report yet from MDA.
I called this past Monday, the 17th (two weeks after diagnosis,) and found out that the "world famous" MDA pathologist is out of town for this week and on Tuesday I was told that no other pathologist would do the report that he started. I decided to call MDA myself and was told that no one could talk to me because I'm not a patient. However, the lady at the sarcoma center said that I could not get an appointment for a second opinion unless I was 21 days without treatment. I was scheduled to do a second round of radiation on Wednesday and Thursday. I called my oncologist, who was surprised at this news but who also could not offer my any advice except to go ahead with the treatment she suggested (including chemo today) even though she said it would not cure me and has a 50-percent chance of prolonging my life. Also, it could keep me from entering a trial or getting more specialized treatment at MDA. I called the radiological oncologist and he said let's delay radiation since it had already been two weeks so that the clock would keep ticking and not keep me from getting to MDA. In addition, my gyn oncologist couldn't even get the MDA doctor to call her back. So bottom line, I made the decision to quit treatment until I get to MD Anderson.
I called for an update on Wednesday and found that my gyn oncologist, her nurse, and her PA were all out of the office for the day. The substitute nurse "shared my frustration." So I started making some other calls. I called my referring gyn who called a friend who is an oncologist in Houston and he suggested I call the MDA patient advocate (and even mentioned taking my case to the press!) She also said she would call my gyn oncologist. I left a message with the patient advocate. My lap-band surgeon also suggested I look into Sloan Kettering in NYC so I called there and they took my information and immediately emailed the info I would need to get an appointment there. However, getting in there would still hinge on the pathology report.
I don't know if my calls had anything to do with it but I finally got a call yesterday that another MDA pathologist looked at my slide and made a preliminary diagnosis that I have a uterine carcinoma, not a sarcoma. Because of this, I should go to the MDA gynecology department rather than the sarcoma department. Today MDA called and I have a tentative appointment of April 1 (no fooling!) and I should plan to stay 5 to 7 days. I won't yet resume radiation just in case it still turns out to be a sarcoma. All of this hinges on the final pathologist report from the guy who has been gone all week.
Since most carcinomas are much more common than sarcomas, I find this news encouraging. Of course, a lot of this has to do with the staging of the tumor and since it has metastisized to my lungs, I already know it is one of the more serious cancers. But I also know that more research is done on the more common cancers so there may be better treatments available. At least now I should be examined by experts and I can get on with getting rid of this thing!
My daughters, son-in-law, sister and I went to a cancer support meeting Tuesday that was most helpful and positive. Also, I bought a pair of cowboy boots and have worn them the past two days -- they are quite comfortable! I got these:
They have gel insoles so now I'm kickin' and stompin and gellin'. I also got a spur keychain for an extra jab now and then. I'm feeling great because I'm more than two weeks out from any treatment and the tumor has quit bleeding. I've found a great teacher who can take my classes because my daughters are going to babysit for her son. So everything is looking pretty positive right now.
I'm sorry this is so long but if nothing else, I needed to journal it. Thanks for all your good wishes! I'll let you know when there's more news!
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