It appeared after some time of just being on the chemotherapy that the tumor was still growing. A ct scan confirmed that, and it was decided by my radiation oncologist that something called quad shot therapy would be best. That would be two high intensity, focussed radiation treatments a day for two days. I was quickly fit for another mask (I’ll get a picture of my torture device). All in one day they did that, performed an MRI in that, a ct scan and a pet scan. The MRI was horrific. The mask felt really tight because my neck had become so swollen with fluid on my right side. I was warned by my medical oncologist that at some point it was going to burst open. So having a tight mask around my swollen neck put me into a panic, but I breathed deep and went through with it. When I was done I cried like a baby. BTW my neck burst open a few days ago. It was just a steady drip for a couple of hours. We have gauze and tape in the house. I change it when need be. Quite a dramatic difference from before and after, pictures of which I have and will post soon.
My medical oncologist decided to cut the two chemo drugs I receive every 3 weeks, along with the antibody drug which was supposed to give me acne and never really did. It’s been replaced with another drug with barely any side effects. The other 3 obviously didn’t seem to be doing what they should, so why make my radiation treatment even more unbearable? I am somewhat relieved that that was her decision
The radiation oncologist, after reviewing my scans, then decided that the IMRT treatment that I had before would be the better way to go. I went in today for the first treatment and found out that my dosage is close to that which they gave me in Morristown. That is a crazy high amount, an amount I was told was enough for a life time. At this point, they are trying to keep me alive for as long as they can, and we have to just not focus on the long term side effects, such as teeth loss, necrosis of the jaw, and other things I’m just not going to remind myself of. If I live long enough to lose my teeth, I’ll count that as a blessing, because at least I’ll be alive.
This tumor is relentless. It just doesn’t want to go away. I tell it to fuck off and die all of the time. Why isn’t it listening to me and to all of you who think and pray for me? I’m not going to be fake and skip around and be like “I’m alive! I eat organic smoothies and this herb and that herb. I don’t. I am in constant, constant pain. I can only focus on the moment and try to manage that. It seems the larger she gets, the more she pushes up against my nerves causing tooth pain and constant tongue pain starting from the tip of my tongue and going all the way down into my throat. I force myself to drink 3 Ensure Plus shakes with a cup of whole milk in each serving every day. lt’s a fucking chore. I am scared of what will happen when my mouth starts to get funky from the radiation. I want to avoid the feeding tube because it impaired my swallowing mechanism. What I am hoping happens is that the tumor does shrink, like it did before, lessening the pain, so that mouth pain from the rads will be treated by the pain meds.
I am signed up for 35 sessions daily, in NYC. I’ll be staying at my mom’s some of the time, and at friend’s places when I can. Some days Damien will drive me. I didn’t ask anyone else to drive me because it is a total schlep.
These days I consider myself agnostic, so at this point, I will be visiting a church, some place where I can just close my eyes and ask whatever is out there to help me out. To help my family out. To give me the strength I know I have in me to just plow ahead and get through it. The kids have been pretty ok all things considered, but Maggie has been acting out lately and I worry about her. Although I have every reason in the world to pamper myself, I feel guilty for not picking them up from school and doing all of the things a stay-at-home parent does.
The very fact that Maggie sometimes cries when she’s away from me reinforces what I already know; I MUST get better. I can’t be taken away from my life because this alien creature trying to take over my body now has the upper hand. I may be the anti-poster child for healthy eating these days, but my attitude is positive and strong, even if I spend most of the day napping because of the pain meds that make me nod off like a heroin addict on the subway. The geniuses at MSKCC and I are going to kill this beast in me. Can I get an amen up in here?
Well, it’s been a rough couple of weeks. I admit that I did not ask for the proper amount of help this time through. I should have had my mom or Damien home with me to make sure I was drinking and eating enough. I lost 10 pounds in 10 days. I barely made it into the chemo clinic on Friday. They gave me hydration and then my Erbitux, the wonder-drug to which I had previously reacted. They doped me up with enough steroids and Benadryl to counteract any reaction, which I fortunately did not have. I napped for a little bit while my mom and Damien watched me, and then the infusion was over. Now we wait for bad acne to break out all over my face. The more I get, the more the drug is working. Then I’m back this Friday for more of the Erbitux. Next week I get my second round of Cisplatin and Taxotere, and then it’s time to feel like royal crap again. This time I will ask my mother to stay with me during the day, to make me drink my water and to make me eat something.
I surprisingly did not puke at all, which is good. I have medicines to take for the nausea which peaks after a couple of days and then gradually starts to go away. I have to plan my next round of Cisplatin and Taxotere around my daughter’s 5th birthday party on the 27th. I want to be there and I don’t want to feel like shit.
We were told by my medical oncologist that my lungs are clear, according to my last scans. I figured they were since no one had mentioned the results to us in the interim, but it was nice to know that there has not been any metastatic disease. I held back some tears.
The fellow who examined me before my oncologist arrived asked to speak to me in private. I asked him what he wanted to know. He asked if I’d been having suicidal thoughts. I looked him in the eyes and assured him I hadn’t, that I have two small children to live for, that I was depressed but functioning. I guess he thought that losing so much weight was a warning sign? Or he’s just doing his job. Dude, I’ve made it this far. Why would I put up with any more treatment to then go ahead and kill myself or hurt someone else? Bitch, please.
I am considering getting some medical marijuana. I can’t smoke it, and I have to get the kind which has the paranoia-inducing chemicals taken out. I’m sure it’s available. It should really help me with the nausea and eating.
It is so weird to be so thin again. I can’t remember ever weighing this little in my life. It was probably in high school. I don’t even recognize my legs. There’s still muscle on them, but they’re so skinny! I’m looking forward to getting my strength back and walking, putting some more muscle on them. My clothes hang on me. A wise me kept all of her “skinny” clothes because I knew I would eventually fit into them again, which I do.
My hair should start to fall out soon. I had my first dose of Taxotere on October 4th. The last time I had my first dose on April 1st. On my husband’s 40th birthday I woke up and ran my hands through my hair to find no hair loss. Later that day, it started to come out in handfuls. That was April 13th. So I’ll probably start to lose it soon. I have a prescription for a wig, which I’m going to buy this time. I don’t want to walk around with a bald head or a scarf on. I’ll find something cute.
I don’t think about it all day. Well, I can’t help but think about the fact that I have cancer all day. It’s on my mind. I know am suffering from nausea now because of the damn chemotherapy. At least I am keeping my fluids down, thank God. I hope to beat this rough couple of days without vomiting. That would be nice. Nausea sucks, and I just took more meds to combat it. Hopefully in a few minutes they will soothe my stomach and I will be able to fall asleep.
What “hit” me just now was a message someone sent me to my inbox on the oral cancer foundation website. She wrote that her niece has been on one of the drugs I’m on now, Erbitux, for 18 months, and it is keeping her alive.
I am suddenly shocked into being reminded that I am not only a cancer patient, but a very sick cancer patient. I am still able to swallow, and eat, if my delicate stomach could stomach it. I have a tumor that by now has probably outgrown the lime stage and is very well into a stretched-out orange shape. No one has told me how big it is, even after I asked. I am getting much-needed rest, plenty of fluids, a little short on the calories, but I’m not dehydrated.
I have a fucking massive tumor in my neck, under my chin, in my throat. I don’t have control over this fucking beast. Maybe the chemo will start to strangle this mother-fucker, quickly, slowly, who knows?
Why me? We all ask ourselves this question when something horrific happens to us. I always told myself that I had my fair share of trauma in a lifetime: my father’s suicide in 1984, followed by my first (and I thought, only) medical scare—a massive nasal polyp that outgrew my sinus and fell down the back of my throat. My mother saved my life by clearing an airway (how did you do that, mom?) allowing me to spit up blood and whatnot. We went to the hospital and they made me wait for days for the operation to cut it out because they didn’t know from where it originated—my sinuses or my brain. Testing took longer back then? It was a couple of days of waiting. Mom kept telling me we just had to wait for an operating room. My poor mother, living through my crazy dad’s suicide and now this, barely a year later. Poor me, yeah, but kids are resilient, and I wasn’t in any pain. It turns out the polyp was from my sinus and they cut it away, did a couple more operations in 1988 and 1991, and I’ve never been bothered since. I outgrew this rare condition, which is caused by allergies and malformed sinuses.
And now, almost 30 years later, again, there’s major trauma. There was one other trauma I don’t care to go into, in my mid-twenties, but I think a lot of us could describe our 20’s as “traumatic” to a certain extent. I bounced back from that and went on to have a good, stable job, meet my husband, pop out two kids, and make a life with my family.
And now we have this horse shit! Enough! I say, in the next life, please let me suffer less. If life is meant for learning, don’t you think I’ve learned enough in this life? I get it! Life is short, life is pain, life is joy, pleasure, all of it. I get it! I GOT IT! Let me live to be, I dunno, at least old enough to see my kids reach some more milestones. Let them at least both be reading, writing, wearing glasses. Hormonal. Hah! Let me experience my daughter on her period. Let me see Casey disappear for hours into his room. Let them hate me, then let them go to college, then graduate, then have their own versions of messed-up 20’s, or maybe not. Maybe they’ll be more together than I ever was. They will marry, and they will have children, and I hope to whomever has a say as to whether or not I survive this bullshit, I will live to see it all.
And I didn’t post them immediately because they were not good. I wasn’t going to say anything at all at first, because I just couldn’t find the right way to say it, but I have to say something, so here goes.
The cancer is back with a vengeance. That evil mother-fucker had the fucking nerve to grow back bigger than before in a matter of a couple of fucking months. The pain I have been suffering through for the last two months was tumor growth. That fucking bitch is back.
The surgeon met with me on Monday to go over the options. He said he could remove my entire tongue, my voice box, and part of my face (to clear the margins) but there would barely be a 5% chance of it keeping me alive for long. Here we thought that the worst case scenario would be losing my tongue. Now I don’t even have that option. But he did say more chemo and radiation and clinical trials could shrink the tumor to a manageable size. The basic impression is that the tumor will never go away.
An appointment with a medical oncologist was scheduled for today. We (Damien, my mom, and I) have been losing sleep wondering if chemo and radiation and a trial would even be an option at this point. As my mother later put it, “I’ve been walking through my apartment at times weeping, wondering if you have only have a few weeks left”. Mom is not one to ever burden me with her tears, and for that I am so grateful. As much as I don’t like knowing she is suffering, seeing her cry is heartbreaking. She has always been a rock for me and if she can’t keep it together, neither can I. I cannot be of comfort to anyone at this time. I’m barely keeping myself together.
We have a plan of action. Dr. Sherman said that there just unfortunately are a small number of people in the world who are like me; they are young,don’t smoke, don’t drink (in excess) and are HPV-, who happen to grow these aggressive tumors. There is a clinical trial which I can’t participate in right away because it takes a while to work and we need to shrink this bitch ASAP. So he’s putting me on three chemo drugs: Erbitux next Tuesday, which is an antibody something or other, and then Cisplatin (which I’ve taken twice before) and Taxotere (which makes my hair fall out). Those will be on Friday. I’m starting off the chemotherapy at Sloan Kettering in the city but will continue forward in the satellite clinic in Basking Ridge, NJ.
I meet with the radiation oncologist tomorrow to see what the radiation options are, if any. I don’t believe they would radiate at this time, but maybe at a later date, once the tumor shrinks.
I also got a Fentanyl patch which is continuous narcotic pain relief for 3 days. That ought to help me sleep better at night. Fingers crossed. It sucks to realize that you have terminal cancer, but it sucks even more when you’re also in constant, horrible pain.
I will do whatever the fuck I have to do to stay on this planet for my kids, for Damien, and for my mom. Too many people depend on my fabulousness so I can’t go anywhere, yet. I had a couple of conversations with my Dad where I shook my fist in the air and said “I am not ready to see you again!” I hope this means he heard me.
Today I walked in the 6th annual Oral Cancer Foundation Walk for Awareness in honor of David Nasto, who lost his battle with the exact same cancer I have at the age of 47. He had gone through countless radiation and chemotherapies, and eventually had his entire tongue removed. This did not stop him from living life to the fullest and although I didn’t know him, I could feel his positive energy all around me throughout the day.
A 50 year old speaker talked about his illness and how he endured a 24 hour procedure to remove all of his tumor and lymph nodes all over both sides of his neck. He had a tremendous recovery, which took many years, and today, 12 years later, he was running at the front of the pack. I could tell that at times in his life he probably didn’t think he would make it and how grateful he was to be alive.
I noticed a couple of survivors who had either part or their entire jaws removed. My husband introduced me to one of these people who frequently posts on the online forum on the OCF boards and has helped me and countless others so much. She is permanently disfigured with her entire jaw removed due to her oral cancer. She is such an inspiration and such an encouraging, positive person. I was thrilled to meet this woman whom I thought I would never see in person. She is so smart and just a fountain of oral cancer information. Her signature reads “Very happy to be alive”.
Whenever I feel sorry for myself I think of her and others I noticed at this walk who have walked a longer, tougher road than I. I will find out on Monday if there is indeed residual tumor on my tongue and what my surgical options are. It is possible that a glossectomy will be necessary (removal of entire tongue).
If I lose my tongue, you know what that means, but at least I’ll be able to get myself around. I will learn sign language and believe me, I will find every way possible to continue to nag my husband and make others laugh. I promise you I will learn how to play the bass guitar and get my musical kicks from that. I will bow-chica-bow-bow the shit out of that guitar and I will get really fucking good at it. Cancer will not silence my love of music.
Or I could lose just some more of my tongue, which isn’t devastating. Best case scenario it’s nothing but dying tumor or fluid or scar tissue and I will thank every deity imaginable. Let’s hope for the best. And all you religious folks keep praying hard for me. I love you.
I wanted to wait to post news until I had some, but I figured I could use all of the positive energy I could get.
In the beginning of August I started to develop some nerve pain along the side of the tongue which was quieted down by some Advil or Aleve. One night, the night before we were to spend the entire day at Hershey park with the kids, I couldn’t get to sleep. Nothing would make the pain go away. It would shoot through my tongue to the back of my head, pulsing in my ear. I eventually fell asleep and somehow made it through 10+ hours on adrenaline.
When we got back I set up an appointment for a second opinion at Sloan Kettering in Manhattan after my mother begged me to go there. She started the ball rolling by calling the radiation oncologist at Sloan Kettering’s Basking Ridge facility and asking if she thought further radiation would do any good. I got into see the head of head and neck radiation oncology in Manhattan and based on her exam and thorough study of my pet scan she felt radiation was not necessary and wouldn’t do any good anyway. If the tumor hadn’t completely died with the amount I had, a little bit more wouldn’t help. She recommended I have a ct scan and an MRI, which I got done. Both seem to show that there is something there where the tumor was. A ct-guided needle biopsy was performed on Wednesday and now I wait for the results. It will tell me if the mass is scar tissue, dying tumor, fluid, or residual tumor.
If it is residual tumor, additional surgery will be necessary. I don’t know exactly what is involved but I know it would mean further removal of my tongue, possibly all of my tongue.
In the meantime, the pain has increased to the point that at times I am up all night. I was given Vicodin and referred to a pain management specialist whom I saw on Thursday. Apparently I am taking too much Vicodin and he prescribed me Lyrica for nerve pain with Percocet. So far that isn’t cutting it and I am back to being kept awake for hours at a time, not with shooting pain but throbbing ear aches. It will take a while to get the right meds.
Yes, it’s nice to be high. I don’t drink or smoke pot anymore, so this is a decent alternative. But I can’t really drive around anymore, actively participate in anything. My kids stay in after care after school and my husband brings them home after work.
It is common to have nerve damage and pain post-radiation. No one tells you how bad it can get because they don’t want you to refuse treatment.
I am just sick and fucking tired of this shit. Somehow my kids are so resilient and they carry on, aware of the fact that I am suffering, but still wanting me to make dinner, take care of their boo-boos, and mother them.
I just took a Percocet and “Deep Blue Day” from Trainspotting comes to mind:
I’ve been going to the same Costco in Wayne, NJ, since October, 2007, when we moved from our slum-lord building in Brooklyn to the autumn leaves of Montclair, NJ. I’ve seen the same cashiers over the last almost 6 years, exchanging pleasantries and accepting compliments about my two children. Today, one of the ladies looked at me and asked “You cut your hair?” and I whispered “Cancer”. She took my hands in hers and said “I’m so sorry. You are strong and you grow your hair back again. You will make it!” I thanked her and started to walk away and she stopped me and hugged me. Her coworker gave me the thumbs-up, eyes twinkling, and they sent me off.
It’s one thing to know you are loved by your family, friends, co-workers, neighbors, etc.. It’s an entirely different feeling to be blessed by strangers, acquaintances, cashiers, medical receptionists, a passerby in the ladies room of a Friendly’s.
Every day some one tells me how beautiful I am. If I had known I’d look so good with short hair I would have…
There’s something in me that is fierce, strong, resilient. Beating the alopecia to the punch by cutting my hair made me even more ready for my battle to come. The fact that others can see that strength now is humbling. I remember who I was 10, 11, 12 years ago. I am glad I am no longer that Katie, but this Katie. My oncologist said I was one of the most stoic patients he had ever met. Who knew Katie Travis had it in her?
There is love all around us. If you are lucky, you won’t have to go through a life-altering experience such as this to notice it. I am grateful for this eye-opening experience of being and feeling loved.
I’ve made it to the summer! What a long, dreadful, miserable, disgustingly awful winter and spring! I am so glad to finally be on the other side of cancer treatment. The chemo nurse unhooked me from my last drug on Friday, May 17th. I felt pretty crappy for the few days after that, but I diligently flushed my feeding tube with water and slept through it. I recovered more quickly than I had after previous treatments and was eating pizza 9 days after I was unhooked. As I suspected it tasted like pizza that had been dipped in water, which is a lot like what cardboard probably tastes like, but I was happy to finally eat something besides oatmeal or soup. Here we are at week 7 post-treatment and I can happily say that about 75% of my taste is back. Sweet is not quite there yet; I’ll have a couple of bites of something sweet and it tastes almost as good as ever, but then the taste fades and it tastes like plain yogurt. The sweets I can taste somewhat to my enjoyment are chocolate anything. I’ve put on a couple of pounds as of late because of my fondness of chocolate cake of which I had in abundance during my birthday week. Now that my feeding tube was finally removed the day before my birthday, I plan to start working out again after almost 10 months of inactivity.
I had such a great birthday weekend! My aunt and uncle surprised me by driving up from Chicago and met me at my house as I was moving stuff in. Oh yeah, we moved to a house in Fairfield over my birthday weekend. It’s been nice unpacking and thinking about other things besides doctors appointments.
A couple of weeks ago my ENT examined me and said the tumor sites are soft which means the radiation and chemo worked. He had me have a cat scan to make sure and it appears that I’m in remission for now. I say that knocking on every single piece of wood imaginable because there is a very high risk of recurrence given the initial aggressiveness of my tumors. My medical oncologist is leaving my chemo port in just in case, and I’m fine with that. I’ll believe I’m in the clear when many years have passed and I haven’t needed more chemo.
It’s hard to be in this waiting game. I am moving forward with my life and taking things day by day, but in the back of my mind, every day, I know that there’s always a chance that a scan will show something has returned. I can’t worry about that unless it happens, so I try to live my life with the understanding that life is short, life is wonderful, and that I have to just live in the moment. I’ve had a lot of great moments!
I start chemo again on Monday, April 1st. The joke is on the cancer because I’m not taking all of this abuse to have a recurrence. My radiation oncologist calls this round of chemo an insurance policy on the previous treatments. Because my cancer has been so aggressive, there is a high rate of recurrence, but I am hoping that because I responded so well to the radiation treatment, and have since then healed so quickly, I will be the victor. If I do have a recurrence, all they can really do is put me on chemo again. I’ve had the maximum lifetime dosage of radiation and surgery would involve removing my tongue which is not an option.
I will be getting not one, not two, but THREE drugs. On Monday, I’ll get Cisplatin and Taxotere. Then they’ll send me home with a portable IV/fanny pack thing connected to my chemo port with drug number 3, 5-FU (Fluorouracil, but I much prefer to call it 5-FU). This stays until Friday morning when I go back to the clinic and get the IV removed and get my shot of Neulasta which boosts my white blood cell count to avoid infections. I get two weeks off and then it’s two more cycles, for a total of 9 weeks.
My mom came with me to my chemo teaching and we learned about all of the side effects and what to expect from this aggressive treatment. It is not going to be easy, but I already know what isn’t easy so I’m putting on my brave face, again, and am going to take it day by day.
Mom will take the train from Penn Station to Morristown and stay with me all day, as she did for most of my previous chemo treatments. A neighbor mentioned to me that she could tell that my spirits seemed up whenever she was with me. We definitely shared a giggle or two, and then a nap.
I can’t imagine how hard it must be for her to walk through the clinic to my seat, passing chair upon chair of mostly elderly people sitting with their children who are caring for them. She says that she wishes that she, the smoker, had this cancer instead of me. I know that someone her age wouldn’t be able to handle this aggressive treatment.
I was told I will definitely lose my hair. I already have lost a third of it on the back of my scalp, so I will finally have my Britney Spears moment and shave it all off. I have always wondered what my big, bald head looks like, and in a few weeks I will find out.
If you see me online, and even if you don’t, remind me to drink plenty of water, at least 64 ounces a day. Even if I can’t swallow it because of the inevitable mouth and throat sores that will come back, tell me to get off of my skinny ass and put it through my feeding tube. I’ve got to get the toxins out of my system. I’ve got to get healthy again!
As Maggie was eating her Tostitos Hint of Lime tortilla chips, I slowly breathed in the aroma of salt and felt that I could almost taste it. I bravely licked a chip and was met with nothing. Maybe there was the hint of tortilla, but there was absolutely no salt taste, no seasoning, no familiar deliciousness I have missed. Nada.
I have been overweight most of my life and now, as I stare at the scale and realize in 20 pounds I will have reached my goal weight, I am asking myself why? Is this the universe’s cruel way of teaching me that a life of overeating leads to this? You overeat, you lose some of your tongue and your sense of taste? Why me? What the fuck did I do to deserve this?
I was told by one of my doctors that I’ll never have as robust a singing voice again. Is this the universe’s way of punishing me for not taking advantage of more opportunities in my past? If only I had practiced more, taken my lessons more seriously, gone to a conservatory, I could have had a career. But I didn’t, and I wasted my talent, so the universe has taken my voice from me.
I am suffering the post-radiation blues that they told me would occur. You’re left at home, waiting to start feeling better, but it’s not happening quickly enough. Every day I had someplace to go, where people paid a lot of attention to me. I felt the love and compassion from my friends and neighbors who drove me every day to Morristown and back.
Now I’m home watching too much of the Food Network while ingesting Nestle’s Fibersource HN Tube Feeding Formula. I flip the channel to CNN and Valerie Harper is talking to Piers Morgan about her untreatable brain cancer. She’s so bubbly and full of life and reminds me of myself before I started treatment. Everyone told me I was brave, and I didn’t understand why. It hadn’t been hard, yet.
I decide to tell myself, over and over again; The universe is random. This could happen to anyone. More often than not it happens to smokers and heavy drinkers. It just happened to me because I’m rare and unique. I’m a medical super freak of nature who hopes to savor the salty, bitter and sweet in life for a long, long time. Repeat.