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I apologize for the lapse in updates ..I had a very interesting and trying past few months and didn’t know exactly how to write about it. I started and stopped and deleted over and over. Just so we are all on the same page, I was diagnosed with Stage IV pancreatic cancer the end of April, 2017. What started out as low back pain radiating to the front turned out to be one of the most vicious types of cancer the medical community knows about. Very often, a patient will not live much past diagnosis since the symptoms don’t start till its too late to treat. Pancreatic cancer is treatable, not curable. Read that twice if you need to. You hope for the best and prepare for the worst. My husband and I say that to each other almost weekly . It has become our mantra . This short little sentence helps us to appreciate sitting outside, watching sunsets, loving our children more ( if that’s even possible )buying better coffee beans and not concerning ourselves with bullshit which takes many forms. LOOOONG story short, after 8 months of Fulfurinox, the metastasis on my liver disappeared and I was deemed a candidate for surgery…..Chemo was discontinued in January giving my body a chance to recuperate prior to surgery. January was a very stressful month for me. The poison I hooked up to every other week became my best buddy. The initial poke of the needle into my port was a delicious feeling I craved. As long as my tumor markers continued to go down, chemo and I were thick as thieves. If this sounds like Stockholm syndrome, your right.
February 12, 2018 I arrived at Jefferson Hospital at 4 AM for a Whipple. In a standard Whipple procedure, the surgeon removes the head of the pancreas, the gallbladder, the duodenum, a portion of the stomach and surrounding lymph nodes. The surgeon then reconnects the remaining pancreas and digestive organs. In my particular case, my stomach was not touched. This is often referred to as The Mother of All Surgeries due to its complexity and the time the surgery lasts which averages 7-10 hours. Mine lasted 9 hours. I can’t begin to imagine how my husband lasted all those hours in a waiting room. Fortunately, a few friends kept him company and sane for part of the time. Post op is a blur to me now. I do remember being in exquisite pain a few times and walking was a bitch. I tried every excuse to get out of the schlep down the hall tethered to multiple alarms, morphine pumps and other concoctions. My husband ignored these excuses and down the hall we travelled multiple times a day. I kept my hospital stay as short as possible (5 days) to avoid catching:
- Norovirus. …
- Mycobacterium abscessus. …
- Klebsiella. …
- Influenza. …
- Pseudomonas aeruginosa. …
- Methicillin-resistant Staphylococcus aureus. …
- Vancomycin-resistant Enterococci. .. Tuberculosis (TB).
The 90 minute ride home is also a blur..Not from residual anesthesia but exhaustion..A form of exhaustion I never experienced which has lasted and persisted up to the present time. Sitting up in bed was a monumental task as was getting out of bed. Not only did I have a very long vertical incision, I also had retension sutures. I looked liked The Bride of Frankenstein. My son did his schoolwork in my bedroom so I wasn’t left alone. I know I know, “why didn’t you ask a friend to sit with you?”. Honestly, asking for help is difficult for me. I rarely asked anyone to come to chemo with me or drive me. Maybe it’s a control thing and I don’t given up control easily. Could be why I have such flying anxiety. I’m not flying the plane.
The months following the surgery were long and difficult. My hubs had me walking a few times a day around the house under protest by me. My dogs were banished to the upstairs so they wouldn’t accidentally jump on me or hit my incisions with there huge slobbery heads. One walk around the kitchen and I had to sit to recover. Getting up the 6 steps to my bedroom was daunting. Not much pain at this point which was nice. My family had my back and kept me hydrated and fed and a couple of very good friends made sure there was a hot dinner available for them (thank you) and that I had a steady supply of knishes, various carb loaded dishes, soups, cooked fruits, pretzels and tomato pies.
Lots and lots of naps later and here I am. My oncologist (the adorable fuzzy one) tells me I do not need chemo or radiation at this point. My oncologic surgeon was pleased with the outcome of the surgery and agreed. Now its just vigilant monitoring every 3 weeks and scans every 3 months. As I said at the beginning of this installment, you can treat, you can’t cure. Yes, it sucks. Yes, you worry incessantly. A change in status can happen overnight and send you back to square 1. So we see in new colors, hear sounds we didn’t hear before and appreciate everything we use to take for granted.
Everyone has been bitching about the incessant rain the last several weeks. My success for now allows me to see the rain. So, now I love the rain…
The past few weeks have been a roller coaster of events and emotions. I’m fortunate that I have a few angels who put there wings over me and help me to forget the vultures and crows who just circle without landing. Asking others “how is she doing” Another cancer, another opportunity to thin the herd, another reason to buy Cheetos.
Neuropathy is still hot and heavy despite the very best efforts of Doctor M, I can no longer lift dishes or glasses without fear of letting go of them accidentally. I drink my hundreds of cups of tea a day with both hands. Next step: Sippy Cup!!! The exact description of neuropathy : Peripheral neuropathy (PN) is damage to or disease affecting nerves, which may impair sensation, movement, gland or organ function, or other aspects of health, depending on the type of nerve affected. Patients with peripheral neuropathy may have tingling, numbness, unusual sensations, weakness, or burning pain in the affected area. Oftentimes, the symptoms are symmetrical and involve both hands and feet. All of this is caused by chemotherapy. Not everyone is affected. Not everyone complains as much as I do…Just my DNA I suppose. There are too many side effects from being treated for cancer to list here. Many are devastating to patient and caregiver and they run from simple nausea and hair loss to the inability to eat or life threatening cardiac issues . My worst side effect is “chemo brain”. I may appear to be solving errors made by Einstein, but in fact Im looking in the refrigerator for my car keys..(true story)…I’m sure I have already said this, but I can’t remember. My husband calls it “Dory” syndrome….
According to my weekly blood work, MRI”s, PET and CT scans, chemo is working beautifully thanks to Doctor N. The man knows his cancers and isn’t afraid to jump in feet first. No sugar coating which is jarring at first, but you learn to appreciate the honesty this dedicated man affords you. Yes, we can try to manage it, no, we can’t cure it…I would say that’s pretty honest.
Grand jeté is a classical ballet term meaning “big throw.” It describes a big jump where the dancer throws one leg into the air, pushes off the floor with the other, jumping into the air and landing again on the first leg. Starting any type of chemotherapy is akin to being thrown into the air and hoping and praying you land gracefully. As I mentioned in previous posts, my people historically do not jump. We were meant to be close to the ground so as not to miss a beet or errant potatoe. This position also helped to avoid wind gusts so prevalent in Siberia….
painting by: Siobhán McGuire
I’ve had a two week break from chemo. The first time I’ve gone that long in 9 months on Fulfurinox and 5 FU. I was thrilled at first. My platelets were insanely low and my oncologist felt I needed a small break to get them higher. Platelets are responsible for your blood clotting. Without enough of them you risk bleeding uncontrollably and bruising at the slightest touch. This makes using a knife, slipping on ice or scratching a big no no. My hubs has put a line on the floor of the kitchen which he says I can’t cross under pain of losing my car key. Ok, fine. Back to plastic utensils and walking carefully as well as no mani/pedi days. I’m a little nervous about skipping a week .
My neuropathy has not improved despite the best efforts of a good friend doc. I’ve also tried canabis hand cream, Gabapentin, frankincense oil, CBD ( don’t ask, I feel like Real PD is going to break down my door ). So I shuffle along with the other patients at The Cafe. We nod hello to each other, comment on a new hat or who isn’t coming back. We all seem to nap at about the same when the Benedryl kicks in. A few times I’ve fought the urge to sleep so I can observe The Cafe without any sound. It’s almost like your underwater. Muffled sounds of nurses chatting, the occasional soft alarm when a bag chemo is empty. The blue walls let you imagine your snorkeling in the Caribbean.As you reach the surface, the sounds of waking patients and bells and alarms and conversations get louder and you realize you have no snorkel, there is no ocean and the fish have disappeared.
The Chemo Cafe is an interesting place. It’s a private club you never wanted membership to. I’m grateful the club owner is a great oncologist who calls me tough and pinches my cheek every week. I’m starting on month nine which is a miracle in itself. I guess I am tough.
Thank you all for taking the time to read my rant/blog…. If you know anyone going through the same, please suggest they give it a look. Sometimes it helps to read that others are having similar experiences and thoughts.💜
Apologies for the long stretch since my last ramble. I have been hit with a bat by The Neuropathy Fairy. This Fairy, which I call “Hudwalker” in honor of the most notorious second grade teacher at PS 26, has decided I don’t need to feel anything in my feet or my hands. In fact, Hudwalker is now deciding whether I need to taste anything as well. “Swat the Fairy you say?” Well I would but this particular woodland creature is about 6 feet tall with a wing span of 8 feet. Not only that, but she has a beehive hairdo in which she stashes her bat. Hudwalker prefers a Louisville Slugger because of the sound its makes when it makes contact with you. Hudwalker may be a name your familiar with if your a Seinfeld fan. Mrs. Hudwalker was an upstairs neighbor who passed away suddenly. She was hated by the whole building . One of the writers had Hudwalker for the second grade a few years before me and was forced to endure her as well. In order to finally get over the experience so many decades later, he killed her off the show. It was the happiest and most satisfying day of my life.
Enough about Hudwalker, I’m happy to report the 2% survival rate for pancreatic cancer of 6 months to one year has been changed to 9%. Sounds like it’s not much of a difference, but to someone looking forward to a birth, or a wedding or a graduation this is huge. Not to mislead anyone, there are many people who have years under their belt with chemo management. There are very encouraging stories to read about and I have have had many conversations with these long term survivors. The common thread among these warriors is an appreciation of everyday they have been granted. They don’t let anything get in way of savoring every minute of every day . Most cancer warriors have gone through all the stages of grief
- Denial – The first reaction is denial. In this stage, individuals believe the diagnosis is somehow mistaken, and cling to a false, preferable reality.
- Anger – When the individual recognizes that denial cannot continue, they become frustrated, especially at proximate individuals. Certain psychological responses of a person undergoing this phase would be: “Why me? It’s not fair!”; “How can this happen to me?”; “Who is to blame?”; “Why would this happen?”.
- Bargaining – The third stage involves the hope that the individual can avoid a cause of grief. Usually, the negotiation for an extended life is made in exchange for a reformed lifestyle. People facing less serious trauma can bargain or seek compromise. For instance: “I’d give anything to have him back.” Or: “If only he’d come back to life, I’d promise to be a better person!”
- Depression – “I’m so sad, why bother with anything?”; “I’m going to die soon, so what’s the point?”; “I miss my loved one, why go on?”
During the fourth stage, the individual despairs at the recognition of their mortality. In this state, the individual may become silent, refuse visitors and spend much of the time mournful and sullen.
- Acceptance – “It’s going to be okay.”; “I can’t fight it; I may as well prepare for it.”
In this last stage, individuals embrace mortality or inevitable future, or that of a loved one, or other tragic event. People dying may precede the survivors in this state, which typically comes with a calm, retrospective view for the individual, and a stable condition of emotions. This is The Kübler-Ross model. The model was first introduced by Swiss psychiatrist Elizabeth Kübler-Ross in her 1969 book On Death and Dying
Élévation refers to the height or depth of a dancer’s jump or leg extension in relation to the standing leg . It is a term used to describe the height attained in springing steps such as entrechats, grands jetés and others.
Gaining height was not something I ever excelled at. For some reason, gravity was not my friend. In fact, our current relationship is tenuous at best. I made sure to stay in the back of the studio so as to be noticed. When my teacher did glance my way, I made it look like I just landed…I was a scheming ballerina.
Over the past 8 months I have learned to gain some height and a full tummy from Ellen, some inspiration from Jerri P., some laughter from Joan, a spring in my step and would bring down a star for me from Debbie, compassion from Marsha and Anne N., a renewed respect for clean eating from Helen, Keeping my sense of humor from Susan B., Trader Joe supplies and dinner from Ilene C. and the comfort of knowing when I call Raffi, he is always available., I will always be taken care of by Dr. Schmoopy, Mary, Daniel and Isaac who are always encouraging me to eat every 5 minutes. All in all, I’m doing ok. All I need is bigger bat…
Todays blog may contain non sensical rambling, unfinished sentences, pointless points of view and in general a huge blob of words on a page. All this is brought to you by a strange and little studied phenomenon called “Chemo Brain” if you understand how chemotherapy works, then you will easily understand chemo brain. If, like me, you had no prior understanding of how it works, let me help you…Chemotherapy works by killing rapidly dividing cells. Unfortunately it doesn’t know the difference between a good cell and a bad cell. So, while it’s busy killing cancer cells, it also kills hair cells ( why you lose your hair). Stomach and intestinal cells (nausea). Bone marrow ( which its constantly producing blood cells). Skin (excessively dry skin) And the mother of all cells: Brain cells (chemo brain)…If you tend to be on the ditzy side of the road you probably will not notice, but if your pride yourself on getting a high score on Facebook Genius tests, beating the crap out out of your friends at Words With Friends and are on level 155 at Candy Crush your probably Mensa material and this sudden inability to finish a sentence or remember what an egg ( the thing that falls out of a chicken) is called can be unsettling or even frightening. There’s no way around theses side effects..You endure them the best you can and hope your family, friends and your local barista understands. Me at Starbucks: Can I have a large ice tea,hot, with half lemonade and half mocha frappe in a small cup with two pumps of any flavor except the flower ones)…Flower ones??
My platelets have come up a bit so i’m back at chemo this week. Had Thanksgiving week off which was nice. My older kiddies came home for a few days. The sudden increase in noise in the house was really nice and the dogs got a ton of attention which they crave.
I’m sitting in The Chemo Cafe today getting fluids for dehydration and nausea meds for obvious reasons I wont bore you with. listening to the various conversations always fascinates me. lots of chatter about The Eagles which I can’t follow..There seems to be a battle of the “side effects” going on as well. Who has it worse, who has more, who needs more meds. All I hear is I need I need I need I want…I don’t engage when I’m here. I find a corner chair and press the button on the chair that makes a sign comes down from the ceiling that says, ” Don’t bother her or you’ll be sorry”. I’m here to save myself and thats all…
Please excuse the brevity of todays blog..I’m still hot and heavy with neuropathy so using my hands is a challenge. I’m not savvy enough to use the voice thingy…..
Today starts #14 of fulfirinox and the 5FU 48 hour pump ( Mr. Pumpy) I wear. I thought by now I’d be cured, running marathons, fixing up an old home, rewriting the Articles of Confederation and a few other small projects I’ve been putting off. A common thread among many chemotherapy patients is you stop planning and “live in the now”. A hard concept to grasp for the chronically antsy. Living in the now means no long-range vacation planning or extended family dinners or picking up a few things on sale for next summer. You live today and you enjoy it the best you can. Your life revolves around what day and hour a particular side effect will hit you and believe me, they never forget to make their presence known . A fellow cancer warrior of mine keeps an extremely detailed diary of their side effects and the day and hour they hit. I thought this was a little OCD but soon learned they plan life this way. They manage to get in trips and get togethers and lunches with friends this way.. Brilliant!!!
Thanksgiving is fast approaching. For a vegetarian family its not about the turkey but about all the side dishes which become your main dish. A Thanksgiving at my table had a minimum of 8 dishes. When my kids were little and bombarded with turkey pictures, turkey commercials and the endless handprint turkey pictures (4 plastic bins worth in storage) sent home from school, I had to be creative in my answers to why we didn’t have a giant bird on our table. I could have explained that the Pilgrims didn’t have turkey either but mostly vegetables and fish but when your 2, 8 and 10 who gives a rats ass what the Pilgrims ate. They wanted Pocahontas to walk through the door with a Butterball turkey!! PRONTO!!!! The hubs and I wanted them to appreciate the real meaning of Thanksgiving and not associate it with a bird bred to be abnormally humongous and flightless. I channeled my inner PETA as best I could and we all agreed (mostly) to be thankful for that day. For all of us sitting at a table together and pretending tofu was turkey with carrot wings and cranberry eyes. We lived those days to its fullest. Something I lost along the way but now working on with the help of some good friends and knishes from a very friendly jeweler and a nurse who became my mom…
A classical ballet term meaning “separated, thrown apart.” It is one of the eight directions of the body. “Ay-kar-TAY“. Chemo can throw you in a million different directions in a single day. Happy Sad Mad Devastated Hopeless Confused Forgetful Angry Depressed
This week I thought I would repost a very insightful post from a fellow blogger. One reason for that is I have crazy neuropathy from chemo which makes using a keyboard really hard and secondly, this post is very heartfelt and raw. If your new to my blog, you will see I don’t sugarcoat anything, including my own thoughts.
Enjoy and please let me know your thoughts in the comment section below. I appreciate the feedback greatly…
People with cancer are supposed to be heroic. We fight a disease that terrifies everyone. We are strong because we endure treatments that can feel worse than the actual malignancies. We are brave because our lab tests come back with news we don’t want to hear. The reality of life with cancer is very different from the image we try to portray. Our fight is simply a willingness to go through treatment because, frankly, the alternative sucks. Strength? We endure pain and sickness for the chance to feel normal down the road. Brave? We build up an emotional tolerance and acceptance of things we can’t change. Faith kicks in to take care of the rest. The truth is that if someone you love has cancer, they probably won’t be completely open about what they’re going through because they’re trying so hard to be strong. For you. However, if they could be truly honest and vulnerable, they would tell you: 1. Don’t wait on me to call you if I need anything. Please call me every once in a while and set up a date and time to come over. I know you told me to call if I ever needed anything, but it’s weird asking others to spend time with me or help me with stuff I used to be able to do on my own. It makes me feel weak and needy, and I’m also afraid you’ll say “no.” 2. Let me experience real emotions. Even though cancer and its treatments can sometimes influence my outlook, I still have normal moods and feelings in response to life events. If I’m angry or upset, accept that something made me mad and don’t write it off as the disease. I need to experience and express real emotions and not have them minimized or brushed off. 3. Ask me “what’s up” rather than “how do you feel.” Let’s talk about life and what’s been happening rather than focusing on my illness. 4. Forgive me. There will be times when the illness and its treatment make me “not myself.” I may be forgetful, abrupt or hurtful. None of this is deliberate. Please don’t take it personally, and please forgive me. 5. Just listen. I’m doing my very best to be brave and strong, but I have moments when I need to fall apart. Just listen and don’t offer solutions. A good cry releases a lot of stress and pressure for me. Ad closed by Report this adWhy this ad? 6. Take pictures of us. I may fuss about a photo, but a snapshot of us can help get me through tough times. A photo is a reminder that someone thinks I’m important and worth remembering. Don’t let me say “I don’t want you to remember me like this” when treatment leaves me bald or scarred. This is me, who I am RIGHT NOW. Embrace the now with me. 7. I need a little time alone. A few points ago I was talking about how much I need to spend time with you, and now I’m telling you to go away. I love you, but sometimes I need a little solitude. It gives me the chance to take off the brave face I’ve been wearing too long, and the sil1ence can be soothing. 8. My family needs friends. Parenting is hard enough when your body is healthy; it becomes even more challenging when you’re managing a cancer diagnosis with the day-to-day needs of your family. My children, who aren’t mature enough to understand what I’m going through, still need to go to school, do homework, play sports, and hang out with friends. Car-pooling and play dates are sanity-savers for me. Take my kids. Please. My spouse could also benefit from a little time with friends. Grab lunch or play a round of golf together. I take comfort in knowing you care about the people I love. 9. I want you to reduce your cancer risk. I don’t want you to go through this. While some cancers strike out of the blue, many can be prevented with just a few lifestyle changes – stop smoking, lose extra weight, protect your skin from sun damage, and watch what you eat. Please go see a doctor for regular check-ups and demand follow-up whenever pain, bleeding or unusual lumps show up. Many people can live long and fulfilling lives if this disease is discovered in its early stages. I want you to have a long and fulfilling life. 10. Take nothing for granted. Enjoy the life you have right now. Take time to jump in puddles, hug the kids, and feel the wind on your face. Marvel at this amazing world God created, and thank Him for bringing us together. While we may not be thankful for my cancer, we need to be grateful for the physicians and treatments that give me the chance to fight this thing. And if there ever comes a time when the treatments no longer work, please know that I will always be grateful for having lived my life with you in it. I hope you feel the same about me.
Kim Helminski Keller is a Dallas-based mom, wife, teacher and journalist. She is currently receiving treatment for thyroid cancer.
“Melting or Sinking down”. It describes the gradual bending the knee of the supporting leg. It is the same as a plie, but Fondu means you do the plie on only one leg. I’m experiencing this “melting”. Some days the floor seems to slowly get closer to my face and other days I feel like I’m floating . This is just one of the side effects from the fulfirinox I’m receiving.
There is a certain smell that I have a hard time describing when I walk into the oncologists office. If I had to pick, I would say it’s a metallic odor mixed with plastic and disinfectant. It hits you like a Great Dane going full speed. The short walk to the infusion/chemo area can be best described as The Green Mile. It’s only a few feet from the area they do blood tests, which is always done prior to chemo to make sure your still alive and the insurance company isn’t being billed needlessly. So you gather your things and start on the million mile walk to a free recliner hoping its not next to a chatter box. I love a good conversation just as much as the next girl, but seriously, I don’t want to hear about your first car when Nixon was President or how you were able to hook up the microwave to a generator when you lost power so you could make bacon for your elderly Shih Tzu..
Call me cranky if you like, I don’t mind. This fucked up journey all pancreatic cancer patients are on allows us to be so. We all wear crowns and tiaras that give us super powers, one of which is to politely pretend we lost the call on our phones when we have to hear about your normal life and the plans your making…Are we cranky? I guess so..Don’t hold it against us, we still love you…
Said Great Danes…A combined weight of 280lbs….When they get the zoomies, your best bet is to say a quick prayer and get out of the way….
This week is the second to last chemo session until my next set of scans, (PET,MRI and CT). Usually these are done pretty close together so I literally glow for days. I took an extra rest week off so I could celebrate Rosh Shoshona with the fam. My older son came home with his girlfriend, my daughter came with two friends and my younger son had his bud over as well. My in laws visited as well so it was a super nice couple of days. Almost normal!!
You know when you buy a new car and then start seeing a million of them on the road??
I have become very attuned to the enormous amount of advertising online and on various social media platforms proclaiming “How To Cure Cancer With Avocados” “What Your Doctor Doesn’t Want You to Know” “Incas Discovered Cure for Cancer” ( love that one). “Alkaline Diet Cure”, “Ketosis Kills Cancer Cells” and my personal favorite; “Rasputin Cured Royal Family of Cancer”. If you know of any others, please let me know.. This type of nonsense gives chemo patients a false sense of hope . I realize and acknowledge that when you on the edge of a precipice, these “cures” offer some a emotional life line back to terra firma. Unfortunately, they are not science based nor are they FDA approved and many are just dangerous. Many will forgo the traditional route of chemotherapy/radiation and clinical trials when they are told there is nothing left to try and/or their confidence in western medicine is waining. I understand, I really do. No one wants to be told “There is nothing left to try now lets call hospice”. You want something solid to hold onto. Something that wont let you fall down. It is precisely why these shams are so popular. They tout themselves as cures when we know many types of cancers are not curable but manageable long term. Pancreatic being one type of cancer that is not curable but manageable for many. As soon as your browser has the words, “pancreatic cancer” in its memory, you are targeted by these snake oil salesman, the essential oil ladies who peddle their frankincense and myrr on Facebook, Instagram and Twitter. Chiroquackters who tell you that manipulating your spine and flashing colored lights is the cure for everything including damp crawl spaces and insomnia. Again, these are the things a desperate soul wants to hold onto. Sadly, they are empty promises that bleed your bank account and your mind dry. I didn’t address marijuana, canabanoids,edibles or oils because I don’t know enough about them, but from what I’ve read and the many many people I’ve spoken to it seems to be helpful for them, especially where a lack of appetite or nausea is concerned. Personally, I’m not at the point of trying cannabinoids for my side effects, but at some point I just may give it a go. In fact, a good buddy of mine gave me a “gummy bear” with strict instructions to just slice off tiny amounts. I love this girl…I still have the intact gummy bear hidden away for a rainy day.
I’m sitting at chemo now watching the first of 3 drugs drip slowly into my port, so you’ll have to excuse the above rant. I overheard another patient say they take 1 tablespoon of baking soda and molasses 3 times a day to kill cancer cells. If the oh so adorable Dr. Nazha heard this I’m sure it would warrant a swift swat on the keppy ..
The railing that a dancer uses for balance in the beginning exercises of a ballet class. This long rounded railing is the solid, reassuring part of a dance studio. You can’t fall while holding on. You can look as graceful as a swan when there is something solid in your hand keeping you straight yet beautifully fluid in your motions. I loved barre work. It made me feel airy and light knowing I couldn’t fall down. In reality, the barre is not what makes you this way, its all you with something solid to hold onto.