Sex After Cancer


by Leighann Sturgin

The surgeon who performed my first surgery, a total colectomy and left oophorectomy, had no personality. He was always very serious and didn’t fill me with any warm fuzzy feelings. I was lying on the operating table, in the cold, stark white, sterile OR when Dr. No-Personality came in the room and asked if I had any last questions before the surgery. “Yes” I said, “One question; How long do I have to wait to have anal sex after surgery?” Yes, I actually said that! I just wanted to see what stiff, Dr. No-Personality would say, and break the tension and alleviate my anxiety. The entire OR burst out in laughter, except for him. He made an “Ahhhhh” noise, backed away and rushed out. The room erupted into laughter again and one of the nurses leaned over and whispered in my ear “He is a born again Christian.” I whispered back, “So am I.”

IT WAS A JOKE! Having Ulcerative Colitis since I was a teenager, I dealt with a lot of diarrhea and abdominal pain. Anal sex isn’t something I ever considered or desired anyway. That is what made it funny to me! Not to mention the staples involved in the anastomosis.

Six subsequent major abdominal surgeries (different surgeon) followed including a hysterectomy, splenectomy, 2 HIPECs, nephrectomy and one to remove a loop of small bowel that was causing an obstruction, after each one, I always asked “How long do I have to wait to have sex with my husband?” Every time his answer was the same “at least 6 weeks depending on how you feel.

During my first HIPEC surgery when cancer was scraped from my bladder, my right ureter was inadvertently damaged so my surgeon placed a ureteral stent. They followed that up with 8 weeks of radiation on my bladder. Unfortunately the radiation went through my vagina causing permanent damage. The ureteral stent was changed every 3 months for 7 years until I had a right nephrectomy in 2012. The stent was a little piece of hell on earth. It hurt EVERY day. It made just peeing hurt let alone having sex.

I have an ileostomy, a giant scar, and radiation damage to my vagina. I’m underweight. The hysterectomy induced menopause so I am dry in places that used to be wet and wet in places that used to be dry. I have a Hickman catheter sticking out of my chest, to which I hook up a 2.3L bag of IV fluids for 10 hours every night. Stop and think about that for a second. Think about the size and weight of a 2 liter bottle of Coke. I hook that up to a tube sticking out of my chest and sleep with that every night…..very romantic.

Sometimes I’m amazed my husband still wants to have sex with me. With all my crap he acts like nothing has changed. Amazingly, he still finds me very attractive and desirable. Part of my brain thinks, how could he still want me? But another part thinks if all this stuff happened to him it wouldn’t have changed the way I feel about him. Sometimes I find his relentless pursuit of getting my clothes off annoying but then again if he didn’t want me that would make me feel terrible too. I guess that puts him in a lose-lose situation.

Here is a little secret I think many women forget; men need to be wanted. When wives have sex out of obligation it’s not the same to their husbands as being wanted or pursued. I’m sure they’ll take the obligatory sex but they also want us to go after them. I want to share one technique that helped us during treatment and all the years of painful stents. When I noticed I was avoiding any physical contact included hugging and kissing him when he came home from work because I didn’t want to encourage him then have to turn him down, I placed a 6 sided die on the nightstand next to our bed. I told him each side on the dice represented how far I was willing to go each day from 1- “hug and cuddle me but I hurt too much to go any further.” 2- “I want to touch you but I don’t want you to touch me”. And so forth all the way up to 6- “It’s on baby, I’m going to rock your world.” Of course I controlled the die and there was only one because my husbands would always be on 6 . This helped us a lot at the time. I didn’t have to worry about sending mixed messages or hurting his feelings and he didn’t feel rejected time after time. We did this because we aren’t exactly great with communication. You can set your own scale and what each number on the die means for you and your spouse.

Sex is a little more complicated for me now. Without the stent, I’m not in major pain every day anymore. I’m still on TPN every night, still dealing with body issues and I’m 40 now. I want to want to have sex with my husband but I usually don’t and I’m sad about that. I’m sad for me and for him. When is Viagra for women going to be available in the US!? Once it is, will a magic pill fix all my problems?

According to the Mayo Clinic:

* Many women find that the stresses of daily life deplete their desire for sex.

* Highs and lows in sexual desire may coincide with the beginning or end of a relationship or major life changes, such as pregnancy or menopause.

* For some women, orgasm can be elusive — causing concerns or preoccupations that lead to a loss of interest in sex.

* Desire is often connected to a woman’s sense of intimacy with her partner, as well her past experiences. Over time, psychological troubles can contribute to biological problems and vice versa.

* Some chronic conditions can alter a woman’s sexual-response cycle — causing changes in arousal or orgasmic response.

I check every one of those boxes, it’s no wonder I feel the way I do. Am I alone?

Lost and Found

Clinical Trial

by Belle Piazza

It’s funny the things you remember when you have cancer and the things you don’t. I distinctly remember the day before my colonoscopy. I was mowing our lawn on our riding lawnmower. It was a beautiful sunny fall day and I was over by the dog run as I thought to myself, “there will be life before my colonoscopy and there will be life after my colonoscopy – but it will never be the same”. I don’t know why I thought that. When I was driving down to Portland, a week or so after my scope, to have a rectal ultra sound done to help determine if I had lymph node involvement, I remember telling my friend Gloria, who was driving, “if this kills me, I’ll be more surprised than anyone!”. She encouraged me, being a nurse for close to 30 years, and told me how important positive thinking was.

I don’t know if positive thinking has helped me or not. It didn’t stop the cancer from recurring after my initial treatment and it never gave me normal bowel function again, leaving me with a permanent colostomy. Overall I’d say my cancer journey has been a roller coaster ride, with highs like the Rocky Mountains and lows like the deep blue sea.

Nearing the end of my journey, meaning the cancer is growing and no longer responding to approved chemo treatments, I find myself once again in a place I never anticipated being. Once the cancer returned I suspected it would be a matter of time before I considered clinical trials – so I’m not implying that being in a clinical trial is any big surprise. What surprises me is what I’ve found in this trial – something I’d lost and never expected to find again – I’ve found hope.

I don’t completely understand the science behind the drug I’m taking, but when my research nurse and/or doctor explain it to me, it makes sense. I’m the first human to have ever received this drug. For those who have kids that watch SpongeBob, it makes me think of that episode where SpongeBob says proudly “I’m #1!!!!!”. It’s kind of like that. Logically I tell myself, there is no reason to have hope. Many drugs are tested and fail. This is a phase 1 trial – most don’t make it to phase 2. I know all this – but I still find myself hopeful. Hopeful that the drug will work. Hopeful that I will make medical history. Hopeful that my trial will benefit not just myself but my numerous friends who suffer from this terrible disease.

I can’t help but step back and say why now – after all I’ve been through and all the moments along the way I thought the outcome would be better only to have the rug pulled out from underneath me again and again – why now – have I suddenly become hopeful? And then I shut it down. I step back and linger in that corner of my mind where hope still resides – and I just stay there, because it feels so good. I push aside all logic and negative thoughts. I stay there because it feels good and maybe, just maybe, I’ve learned what our friend and survivor skifletch has said all along; “Can any one of you by worrying add a single hour to your life?”

I don’t know what will come of my participation in the clinical trial. A medical miracle, a scientific breakthrough or absolutely nothing. But I do know today, right now – I’ve found something that I’d thought was lost and would never return again. I’ve found hope. And it feels so good.

Life Goes On

photog 2

by Janet Klostermann

Many times, one can find irony in life. A couple of weeks ago, the national news media was focused on the 2 year anniversary of Super Storm Sandy and the anger of people affected by it who have not had their lives return to normal yet. This information surprised me because Super Storm Sandy was just a tiny blip on my radar at the time it happened. We were in Dallas and our 28 year old daughter Lauren was unconscious in the Baylor Cancer Hospital, a stage IV colon cancer patient with peritoneal metastasis who had aspirated on her own vomit and had pneumonia as a result. Every half an hour or so another doctor would come in and tell us how bad her situation was, how the cancer was out of control and how she only had days to live. We did hear them the first few times, but it must be how hospice doctors are trained, to keep repeating the message. Lauren did come out of her coma and we were able to bring her back to our home state of Nebraska where she lived another few weeks. We had some more time together before she left us right before Thanksgiving.

Like the people affected by Super Storm Sandy, I don’t feel our lives have returned to normal either. I don’t think I’ll ever feel the same way about Christmas again, as all our family traditions revolved around our two daughters and now we only have one. We’d bake cookies together, decorate together and I’d get the girls matching pjs for Christmas Eve. Our daughter, Jenn, is married, and of course splits her holiday time with her husband’s family, as she should. This leaves us with a big hole in our holiday. We have done a lot of new things though to get through our new life situation. We went to the movies on Christmas Day. We went out of town to Chicago for Mother’s Day. We ate at a restaurant on Thanksgiving. These little changes in celebrating the holidays did help us get through those days.

Since last spring, we’ve had our focus on preparing for the birth of our first grandchild. Our daughter Jenn and her husband Bob were expecting a little girl. We were kept busy with the gender reveal party, three showers, helping to get the nursery ready, shopping for baby. Jenn had a problem-free pregnancy and birth. Little Nora Jane was born the day before her due date and everyone was happy. I took off afternoons to help Jenn and Bob adjust well to being new parents.

Irony steps in again! A couple of Fridays ago, I got a call from my son-in-law that Jenn was home feeding Nora and started gushing blood. She is a smart girl, so she called 911. I picked up my husband and we went to the hospital. I could not allow myself to think of all the bad things this could be! I thought well, I have heard of uncontrolled bleeding leading to hysterectomy, but if that’s what we had to deal with, that wouldn’t be the worst thing in the world. Fortunately, Jenn lives 4 blocks from the University of Nebraska Medical Center (where some of the ebola patients have been successfully treated). She had an ultrasound and an exam and the doctors said it was just her uterus contracting and pushing out all the blood. Everything was fine, but it was a scary experience. And in the back of my mind, I realized the date was October 24, which was 2 years and 1 day after we received the call that Lauren had aspirated and had a 50% chance of surviving the night. I did wonder, is God feeling the need to get my attention?

Little Nora is helping to fill in the hole in our lives. Although she looks like her mom, Jenn (who has brown hair, brown eyes and similar facial expressions), she also (unlike her mother) has long arms, legs, fingers and feet. That is all thanks to her Aunt Lauren. I have no doubt she’ll grow up to be over 6 feet tall, towering over her parents. That’ll be one of Lauren’s legacies! So, to all there other caregivers out there who’ve had to go through some of the worst experiences life can offer. . .please be assured, life does go on!

The Best Defense is Good Insurance

by Andrew Elder

Let’s face it; Chicken vs Egg philosophers have it easy. When thinking about money issues that come along with a cancer diagnosis, it’s hard to pick which emergency topic should come first: Should it be health insurance to cover all those expensive treatments? Should it be life insurance to provide security to those who may be left behind? Should it be fundamental personal financial concepts to get control of income and start putting out those debt fires?

There’s no bad place to start, so I’m going to tackle them in terms of chronological order. Since health insurance is the first stop on the cancer money train, we’ll begin there. Plus it plays to my credentials; unlike some other topics I’ll cover down the road, I’m a certified New York state health insurance professional and work for a large health insurance company in upstate NY.

Insurance Plan is Best Line of Defense

From the moment you first check into your doctor’s office or the hospital where you get The Diagnosis, your health insurance plan is your first line of defense. Good insurance sets up a wall between your finances and the monstrous bills coming your way. By paying insurance premiums, you transfer the financial risk of adverse health conditions to an insurance company. If the bad stuff hits, they pick up (at least some of) the bills. Most Americans working full time have some level of health insurance, usually provided by their employer.

Since March 2010 when it went into effect – and more recently last October of 2013 when the health care Exchanges opened – health care reform (aka: PPACA, Obamacare, ACA) has had a major impact on how health insurance is structured and paid for, and what it covers. Whether you like or hate the politics, there are several changes under ACA that have significant impact on cancer patients and their treatments.

Right off the bat you should know that colonoscopies are considered Preventive Care and as such are covered for FREE on all individual and group commercial health insurance plans, in every state (some private health care cooperatives and employers who self-insure are the exceptions). There are a few wrinkles (like the scope being free, but if polyps are found, there may be a charge for removal), but by and large it’s a great thing.

Beyond that bit of good bum news, I’ll cover the three biggest changes in brief, but believe me there’s much more to know!

Guaranteed Issuance

This somewhat seedy-sounding term simply means that no one can be denied health insurance due to a pre-existing condition. This is HUGE for cancer patients. Think of it like being able to buy home-owner’s insurance after your house burns down. If you already have insurance, this won’t matter, but if you have to buy it post-diagnosis just know that you can. Yes, you’ll likely pay more for the insurance than you would have otherwise, but compared to the guaranteed tens of thousands of dollars in bills you’d get hit with if you were uninsured, this is a phenomenal deal.

Federal Subsidies

If you already have (or will be getting) insurance through your employer, this won’t apply to you. But if you’re buying on your own through the Individual Exchange in your state, you may be entitled to a few financial incentives that help you pay for your insurance and/or your subsequent care.

Advanced Premium Tax Credit (APTC) is the first. This is most commonly referred to as “premium subsidy”. This is financial assistance that helps pay your monthly insurance premiums. That is, the cost to have insurance, whether you use it or not. Premium subsidies can be used to buy any “level” of plan on the Exchange (there’s “Bronze”, “Silver”, “Gold”, and “Platinum”). It’s based on your gross, taxable household income compared to the Federal Poverty Level: If you make less than $46,680 as a single person or $95,400 as a family of four in 2015 (slightly less this year), you’ll qualify for some level of assistance (see chart for a more complete breakdown). It sounds complicated (and it is), but it all gets calculated automatically when you buy through the Exchange. You can also choose to have the subsidy reduce your monthly premium bill or take it as a tax credit at the end of the year when you file taxes, or a combination of the two.

Cost Sharing Reductions (CSR) is the second. This is financial assistance that helps you pay your out-of-pocket costs. That is, the cost to use the insurance you’ve already acquired (by paying premiums). It’s less flexible than APTC – you have to buy a “Silver” level plan on the Exchange – and the income limits are even more strict, but you could end up with a Silver plan that covers like a Gold or even Platinum plan, depending on your household income.

ACA Federal Assistance Chart - MVP Health Care

Image source:

No Annual or Lifetime Limits on Care!

Again, an absolutely HUGE benefit. In the old days, health insurance could fade out just when you needed it most. At $200,000 or $400,000 in medical bills in a year – sometimes higher – your health insurance would cut you loose. That’d be bad news if you were fighting cancer. Then, if you reached another even higher threshold (the lifetime limit) at any point – your plan would effectively cease to exist. This change means that you can fight on without fear that your insurance will crap out on you.

Bottom Line – There’s No Reason NOT To Get Health Insurance

The bottom line is there’s no reason not to get health insurance. If you get it after your diagnosis, it can be obscenely expensive, but it’s way less than paying for surgery and chemo out of pocket! If you end up out of work, get coverage through your state’s Exchange where your lower income might well qualify you for financial assistance.

For more info and to get an estimate on what you might pay, check out your state’s Exchange website or start at, the Federal government’s primary site – now 40% less crashy!!

Good health insurance coverage will go a long way toward keeping you out of bankruptcy during cancer treatment, and toward keeping financial collateral damage from spilling over to your extended family. You can focus on fighting for your life, not fighting your bills.

Scanxiety and Being a Crumb

by Leighann Sturgin

I admit it. I had a little scanxiety about the CT scan. It was a recheck from a PET/CT three months earlier. It seems there’s always something lighting up on my scans; follow-ups are inevitable. A few minutes after I arrived a tech brought me a yummy liter of iodine water to drink; but before he hands it to me, he asks if I’ve had anything to eat or drink in the last 4 hours. No one told me not to eat or drink…well…maybe they did but my Dory brain has trouble remembering little details like that. I had eaten breakfast so I had to reschedule for later in the week.

When I got home there was already a message from an oncology nurse. She said my appointment with the oncologist the following day had to be rescheduled. I called the office back and asked to speak with the nurse but the receptionist wouldn’t let me. She looked up the notes in my chart and told me I’ve been rescheduled to see the doctor a month later but that I still had to come to the office after the scan to receive IV fluids. Why is this the first I’m hearing of needing IV fluids after a scan and why does the receptionist try to pretend to be a nurse? I asked why I needed IV fluids after a scan and if I could run the fluids at home. She said, “the doctor ordered IV fluids.” “Yes, I heard you the first time – are you a nurse?” “No” she said. “Well then; have the nurse call me back.” I said in a very annoyed tone. I’m not proud of my behavior but I’m used to relaying my questions via a nurse not a receptionist.

When the nurse called back she explained that because I only have one kidney and my creatinine was elevated the doctor wanted IV fluids to help flush the iodine through my system. I informed her I wanted to run the IV fluids at home on my own. Something the oncology nurse knew that the receptionist did not is that I have a Hickman catheter which I use every night to infuse TPN at home. I’m positive I don’t need to go to the Oncology office for a liter of normal saline. Thankfully, the doctor agreed.

I arrived a few minutes late for the 2nd attempt at a scan. They brought 2 liters of yummy iodine water out straight away. One of the liters was for a lady who walked in behind me. We got to chatting and I asked her “What are you in for?” as if we were inmates. We had quite a few things in common, including colon cancer and we both have two sons (hers are grown). She gave me some sage advice on raising sons while battling cancer.

Radiology came to take me back for my scan first. I partially disrobed and lay on the scanner board. The CT tech, Kim, had to poke me twice to start an IV for the contrast. Kim and I are on a first name basis; she’s been scanning me for ten years. Kim reminds me I have to go over to Oncology for IV fluids afterwards. I told her that I’m doing them at home. She calls over to confirm with Oncology while I lie there on the board with my pants down around my knees, a bruise in one arm and an IV precariously inserted into a tiny vein in my hand (you know the ones that hurt like a bastard), and waited. Kim finally comes back and says I have to have fluids in the office. Ugh…how annoying! I specifically asked if I could do them at home! Kim said I was welcome to walk over and talk to Oncology as she removed the IV.

Oncology is about 50 feet from Radiology. Janice, the nurse, is waiting for me. Janice takes both of my hands into hers and apologizes repeatedly. She said something like “I was at lunch. There is a note in your chart that says you can run the fluids at home. I don’t know why the person filling in for my break didn’t look in your chart. I’m so sorry.” Apparently, when Kim finally got a hold of a nurse, they just gave a standard answer without looking at my chart. Janice called Kim and explained everything but Radiology was booked for the rest of the afternoon and my appointment time had long since passed. Kim also pointed out my only viable vein was toast and said she would not poke me again that day. If Janice wanted to try for an IV, Kim said she would try to fit me in but I was afraid that would take too long and I had a bus to catch so I had to reschedule again. It takes a lot of mental games to go into a scan appointment a second time where you’re potentially going to learn that the cancer is back AGAIN. To have to reschedule a 3rd time just plain stinks.

On the 3rd attempt, the waiting room was packed so I took my iodine water off to an obscure corner, far away from the crowd. Feeling a little frustrated, I was hoping and praying everything would go well and I could finally get this test done and the docs would see everything and find nothing. Soon after I sat down in a comfy chair around a little table. A disheveled women sat in the chair across the table from me. She ignored the fact that I was reading and started talking to me about how she had just spent the night in the ER. She was also drinking the yummy iodine water. She gave me a lot of details on her health issues. TMI! I was sitting there trying to figure out why she picked me to talk to out of all the people in the waiting room. I really just wanted to be left alone. Then I realized I wasn’t listening to her at all until I heard her say she had been diagnosed with kidney failure the night before in the ER blah, blah, blah. It took a few seconds to sink in but I realized the IV iodine contrast wasn’t going to be good for her failing kidneys and before I could think about what I was saying I heard myself asking why her doctors would order these scans with contrast if she is in kidney failure? She asked me if she should call her doctor. I said yes.

Honestly, she didn’t look well at all and she was sniffling and snorting all her sinus junk. Then it happened…she coughed without any attempt to cover her mouth. I was totally grossed out. I picked up my bottle of iodine water and walked away. I went to the oncology waiting room for the rest of the hour until it was time for my scan. Within minutes my scan was finished and I was walking toward the door. As I neared ‘Cougher’ I noticed someone praying with her. I have no idea if she knew the person or if the lady was just another patient, but I felt like a crumb. All ‘Cougher’ needed was someone to talk to and pray with and I walked away because she didn’t cover her mouth.

She saw me leaving and stopped me to thank me. She had called her doctor, armed with the information I’d given her and they were no longer going to scan her with the IV iodine contrast. She said I probably just saved her another night in the hospital and a lot of grief. I didn’t feel like I helped her. I didn’t want to help her. I felt like I wanted to get away from her as fast as I could. I felt like a crumb.

We are all on this planet together, to care for one another. It was a good reminder to me of Matthew 25:40, when Jesus says, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’ It was so easy for me to get lost in my own frustration and scanxiety and not see an opportunity to show someone the heart of Jesus. Despite my crumbiness, my scans are all clear. I remain cancer free but definitely have some work to do on my attitude. I have a lot to be thankful for and a lot to be forgiven.

Clinical Trial Crossroads


by Belle Piazza

He walks into the room and immediately asks “What’s wrong with your face?” This man can read me like a book. He notices even the smallest of changes. My hair, my face, my appearance in general. No, it’s not my husband (are you kidding me?) or some illicit affair I’m having. It’s my Oncologist. I’ve been seeing him for close to 7 years now. Next to my husband, the longest relationship I’ve had with any man. And today I’m meeting with him to discuss participating in a clinical trial at a different cancer center – which would mean he would no longer be my main point of contact with all things cancer.

You’d think I’d be thrilled at this prospect. The clinical trial, although only a Phase 1 study, had a waiting list of 16 people and only 3 available openings. I was offered, and accepted one of the openings. It’s an immunotherapy trial, which I have a much greater interest in than standard chemotherapy trials. Theoretically the side effects will be less severe and there is a lot of promise in the field of immunotherapy treatments for cancer right now. My husband is beyond happy, thinking there’s a chance at a cure. I warn him that there is still much to be done in this field and this is by no means a shot at a cure; but rather a hope that it will hold the cancer back a little longer until science comes up with something more solid.

It’s not like I have a lot of options. Sure, there are trials going on all over the country. But therein lies the first challenge – the trials are ALL OVER THE COUNTRY. Trying to sort through data bases and make contacts to find out what’s available, where and how to pursue the different options is completely overwhelming to me. I have an edge up over the average patient in that I have friends at both The Colon Club and Fight Colorectal Cancer who are able to sort through these mazes more efficiently than I’ve been able to do and send trials my way they think I may want to consider. I read through the trials and the comments that accompany them and make contacts as best I can. It’s a feeble attempt. Ultimately I opt for a Phase 1 trial my oncologist has recommended at Providence Cancer Center in Portland. Largely because it is an immunotherapy trial and largely because it’s close to home – I won’t have to travel to participate in it.

I took the path of least resistance, it’s true, and I’m okay with that. Many will criticize my decision. It’s easy to pass judgment on others when we forget that we aren’t in their shoes and we haven’t experienced what they have. I have no real knowledge of what the side effects of this drug will do to me. I think to myself, having experienced a good number of the side effects caused by chemo, that I can handle just about anything an immunotherapy drug throws my way. Then the day before I see my oncologist I experience yet another partial blockage, with pain and vomiting that brings me to tears and I remember how horrible it is dealing with any of these side effects.

I know of others who have traveled overseas to seek out treatments not available here in the United States. I can’t even fathom traveling to Seattle; a 3 hour drive from our home. I have friends in Seattle who would house me and drive me to appointments, but I don’t want to be away from my family – it’s mentally, emotionally and physically exhausting for me. And I know that whether I travel 3 hours or 3 days to find a treatment, there’s little hope for a real cure. It’s all a gamble, a shot in the dark.

So why do we bother at all when our prospects are so dim? Sometimes I wonder myself. But then I look into the eyes of my son and daughter as they chatter on about their day at school and I know immediately why I continue to fight. My daughter tells me she was third to the last to finish the half mile run at school. That’s fine I tell her, the important thing is that you tried. I tell myself the same thing – the important thing is I’ve tried. Others may have the energy to do more; but this is all I have. I know my limits and what I can manage. Having lived with cancer for seven years now, I know what I can take on and what is beyond me.

I’ll get the questions, criticisms and suggestions of what I could or should be doing. But I know in my heart that I’m doing all I can and what is right for me. There will always be doubt in my mind and self criticism as well; we all have it. I may even wonder if my outcome would have been different if I’d chosen a different path, a different trial, a different procedure. But I’ll also know that I did the best I could. What really matters to me is that years from now my children will be able to look back and know that I tried.

For today, I’ve made my decision. I’m headed into new and unchartered territory. I’m apprehensive and scared. I can’t say I’m excited because my expectations for the outcome of this trial are conservative and realistic. Some will criticize me even for this – saying if I don’t stay hopeful and optimistic, it will hurt my chances. I don’t see things that way. My oncologist is also realistic and makes a follow up appointment for me in two months just to continue to monitor my progress from the sidelines. This brings me tremendous comfort. I talk to my Palliative Care Oncologist who also supports my decision and understands how important it is for me to continue to see both my primary Oncologist and my Palliative Care Oncologist in addition to the Oncologist who is running the trial.

I was asked by another cancer organization to write a short blog about my experiences in the clinical trial field. I declined. I have no real experience or advice to offer. I feel like I’m flying by the seat of my pants. Someone more qualified should be writing that blog – not me. For all the talk about the importance of clinical trials and our participation in them, they certainly don’t make it easy on patients to understand them or how to make good choices.

After the Battle, Life Remains

Family and Money

by Andrew Elder

Let’s face it; cancer ain’t cheap. Besides threatening to kill you, cancer can potentially devastate your career, disrupt your family and friendships, and generally take over your life. And a lot of that has to do with money. From diagnosis to treatment to recovery, cancer can be a breathtakingly expensive ordeal. But that fact does not mean that a cancer diagnosis is an automatic ticket to the poor house. More importantly, though perhaps harder to hear, a cancer diagnosis does not relieve you of your responsibility to manage your finances well. Win or lose, protecting yourself and your family financially during a cancer battle is vitally important – either to your own future, or the future of loved ones that may be left behind.

I’ll say it up front: I believe in fighting with every resource that can be marshalled. I would never suggest someone skip an avenue of treatment – and put their life at risk – to save money. But understanding and practicing good fundamental personal financial principles is the best defense against the financial upheaval caused by cancer. Yes, you and your family may end up bankrupt or buried in debt no matter what you do. But a solid foundation and good habits during the fight gives you the best chance to avoid that or recover from it and start moving you (and your family) toward recovery. No matter what happens, being prepared financially will give you a better outcome. And no; “being prepared financially” doesn’t mean having a big pile o’ money. It means managing what you have – no matter how much or little that is – wisely and with intention.

The tragic part is that handling money can be far easier than most people think. It can be a small effort in terms of time and energy, but have a massive impact on every other area of treatment and survivorship. I’ve known survivors who simply gave up dealing with their money issues completely after their diagnosis. They stopped saving and budgeting, ignored their debt, and accepted any expense (and its consequences) as justified with little thought. One friend who survived spent years digging his way out of the massive hole he found himself in, setting back retirement and other goals for his and his family’s future. Another friend of mine was the partner of a man who fought like hell, but sadly didn’t survive. After watching his partner die before his eyes, he then had to sell the home their children were raised in to pay medical debts.

Think about it like this: for those in the midst of the battle, how much harder is it to fight through diagnosis and treatment while also dealing with student loan debt, credit card balances, the stress of living paycheck to paycheck, or fights with a spouse or partner over money? And think of the possible outcomes: if a person beats a cancer diagnosis, doesn’t it make sense to learn to limit the financial damage as much as possible so their new lease on life isn’t a literal lease? And should the worst happen, won’t they leave this life more peacefully knowing they’ve done all they can to leave their families financially secure (or at least stable) in the midst of grief and a new reality?

Starting next month, I’ll be digging into some of these specific fundamental financial principles, and looking at the costs of cancer treatment and how to limit their impact on your life. I’ll cover health insurance and how to make it dance to your tune for a change, as well as what your options might be for life insurance (yes, it’s still possible!). And if you’ve already beaten cancer – but feel like you lost the fight financially – I’ll show you how to put a plan in place that will get you out of debt and back toward winning with money as fast as possible. Those of you who were left behind by someone who lost their cancer fight, the same goes for you.

After the battle, life remains. Whether it’s yours, your loved ones, or some combination of both, the best life is the one free of the shadow of cancer. If I can help anyone reading this with that process at all, I’ll be glad that I’m here and able to do it.

It’s About Forgiveness


by Belle Piazza

Awhile back it was suggested by a friend of mine that I reach out to a friend I had lost touch with many years ago to reconnect. We’d lost touch over something silly, as is often the case, and what I considered one of my closest friends at the time, was no longer a part of my life. The two of us opted to drift apart and as I tend to do, I put it all behind me and moved on. I thought I’d done a pretty good job of dealing with the loss of this friendship until the subject was recently resurrected. And that’s when it hit me. I was still hurt and angry. Very hurt and very angry – and that really surprised me.

It surprises me how we can compartmentalize emotions, box them up and put them high on a shelf in a tiny little closet in a back corner of our minds, never to be seen or heard from again. Until the box falls off the shelf and comes spilling out of that nice orderly place into a clutter of chaos all over our freshly cleansed psyche. Messy I tell you, very messy.

All this unpleasantness upset me. I have enough to deal with – I’m freaking dying a slow death from cancer and now this? Seriously? My emotional quota is completely allocated – I can’t afford to spend unnecessary energy on an old emotional wound that I thought had long since healed. But it hadn’t healed. It had just festered slowly over the years – but never really healed.

Well crap, I thought, I guess I have to deal with it. I figured I had two options. I could reopen the wound and try to heal it – going directly to the source, or I could just open it up – throw some disinfectant on it, let it scar over and put it back in its box in the closet. I chose the latter. That’s right – the latter. I didn’t take the emotional high road and have a bittersweet reunion with an old friend. I let sleeping dogs lie. And you know what? I’m fine with that.

Sometimes I think people have the impression that because we have cancer and we’re going to die that all our affairs – including emotional ones, require closure. That we should tie up all the loose ends with a pretty red bow and leave nothing unsaid. I beg to differ. I’m not going to try to heal this old wound. I’m just going to live with it. I talked to a close friend about it – what happened, how it made me feel and how I realized I’d never truly gotten over it. And I felt better. Did I forgive her? Did I forgive myself? I think I did; I’m pretty sure I did. I just didn’t do it with an emotional reunion or a pretty red bow. It was much quieter and internal than all that.

Earlier this summer a close friend visited me from Phoenix . She had gone through treatment for breast cancer several years prior to my cancer diagnosis. If I reached out to her even once I don’t remember it. Yet she was the first person, when I was diagnosed, to reach out to me – track me down in the hospital and tell me she was there for me – and she understood.

“You’re much more forgiving than I am” I told her. “If you weren’t such a forgiving person, we wouldn’t be here together today”. She just laughed and brushed it off as she always does. “Seriously” I told her “despite all I’ve been through I’m still not as forgiving a person as you’ve always been”. The truth of the matter is I haven’t even come close to mastering the forgive and forget concept. I don’t think I can ever forgive myself for not reaching out to my friend who went through breast cancer.

Cancer doesn’t make us heroes. It presents us with opportunities and challenges us to learn and grow and it’s up to us what to make of them. It resurrects our unfinished business and says “And what are you going to do about it?” as if we had all the answers! It slows us down and dares us to look in the mirror to see what reflects back upon us. It challenges us to forgive ourselves and others. And how does that differ from someone who isn’t looking death in the face? Simply put – for those of us with terminal cancer – we have a time limit in which to respond to these challenges, and we know it.

What I’d really like to learn is how to forgive myself. Although my friend who suffered breast cancer forgave me many years ago, I have yet to forgive myself. And there have been other things I’ve said or done over the years that hurt people – mostly little things, but hurtful nonetheless. I wish I could take back some of the things I said and/or did, but that ship has sailed. In many instances I’ve tried to make amends, but some incidents were in passing – people I have no way of tracking down to apologize to. Some were complete strangers. The only option left is to forgive myself and release that negative energy, but I just haven’t been able to. Not in my heart. Logically it seems simple “you are forgiven!”; but I don’t feel forgiven. I just feel badly for having hurt another person.

I still have unfinished business – forgiving others, forgiving myself. I haven’t conquered either. With limited time, I’m trying to focus on forgiving myself, because I think if I can master that, then everything else should fall into place like a stack of dominos. Or at least that’s my plan. And if I never achieve my desired results, well, it is what it is. I’m human. I’m not Mother Theresa or the Dalai Llama.

I hope each of you will allow yourselves some slack and not succumb to the societal pressures of “forgive and forget” and “leave nothing unsaid”. It sounds so simple; like 5th grade math. But have you ever tried helping your kids with their 5th grade math? Not always so simple, trust me. Don’t get me wrong – there is nothing that will destroy you faster than harboring ill will and anger. It needs to be released. There is nothing more healing than forgiveness – of yourself and others. So while I’ll continue to work on forgiving myself and others; there will be times I simply accept what is and keep moving forward. And I’m okay with that.

Faith or Fear?

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by Leighann Sturgin

I had been home from the hospital for two days following my 5th major surgery. I still had a drain tube in my abdomen. I guess I was a little too active too soon. Somehow, the drain tube poked a hole through my stomach. I was bleeding internally. I knew something was wrong. Once again it was the middle of the night. My husband and sons were sound asleep. I noticed the drain bulb full of blood. My ostomy had blood in it. I peed blood. I felt like I was going to pass out walking the 8’ from my bed to the bathroom. I waited all night, bleeding from almost every hole in my body, for my husband to wake up in the morning. I told him I didn’t feel well and proceeded to vomit a ¾ of a liter of blood into the graduated cylinder next to my bed. All blood. My husband continued getting ready for work and the kids ready for school. He tells me, “I’m going to drop the kids off at school and head to work. Call me if you need me.” I was thinking, isn’t it obvious that I need you now? But I didn’t want to say anything…I didn’t want to be a burden. Why is it so hard for me to ask for help?

My husband left, dropped the kids off and hadn’t even made it to work when I called him and asked him to come back to get me and take me to the ER. He returned. I told him I didn’t think I could make it on my own it to the car. He’d hurt his back the week before. My 6’9” 250 lb. hulk of a husband couldn’t carry me. I sat on the edge of my bed trying to muster the courage for the 50’ trip to the car. I was pretending to be ‘The Little Engine That Could’ sitting there telling myself ‘I can do it. I can do it. I have to make it.’ I failed. I made it to the front door and passed out in his arms. I started waking up about 20 minutes later. Yes, 20 minutes! I heard Todd on the phone talking to dispatch, saying “They should be here by now. Why aren’t they here yet?”

I was lying on the floor of the entryway. It was a cold January morning. I was freezing. My poor husband had to stand over my pale, lifeless body and call 911 because I was too pigheaded to ask for help when I should have hours earlier. When EMS finally arrived I heard them ask Todd “Is she always this pale?” “Pale, but not this pale.” He answered. Then they asked a series of questions about my medical history and any medications I was taking. Todd had asked me several times in the previous weeks to make a list of medications for him but I didn’t. I was too tired and the list was so long and ever changing. I heard them say they were having trouble finding a pulse. I was screaming in my head, “I CAN HEAR YOU, I MUST HAVE A PULSE.” But I was too weak to speak and drifting in and out of consciousness. I was taken to the local hospital with the sirens wailing, and later transferred 150 miles via ambulance to the hospital where I’d have surgery. Todd stayed home with our young sons at my request. My goal was to always keep their schedules as normal as possible. Living 2-3 hours from any other family members, if I couldn’t be there, I wanted Todd to be home with them. I did a lot by myself. I spent several days in the ICU and received several units of blood. My doctors were able to stop the bleeding but it was the scariest experience for both of us. Todd changed that day; I think he began to push me away after that experience. It was too much for him. He either really thought I was going to die right there in front of him or he realized if it wasn’t this day, it could happen any day.

My husband loves to hunt. He lives to hunt. It is a stress reliever for him and it restores his mental sanity, recharges his batteries and makes him happy. He has been going on 1-2 week long hunting trips every year for almost our entire 17 years of marriage. The first time he left me, I didn’t like it at all and I let him know it. The second year, either consciously or subconsciously, he picked a fight with me and was a big jerk weeks before his departure date. When that day came, I was so mad at him; I was glad he left instead of mad that he was gone. The 3rd year, the big jerk did it again but by the 4th year I’d caught on to him and I called him out on it. He never did it again…until he stood over my pale lifeless body and called 911.

He was mean and nasty, but honest about his feelings for the first time since I got sick. A lot of what he said and did was hurtful and some of it was on purpose, but I was glad he wasn’t keeping it all bottled up inside. Some of it was totally justified, like when he told me my IV pump keeps him awake and getting up for work every morning is difficult. If I left the bedroom he would wake up and panic. Most of the time he’d find me asleep on the toilet, but either way it was difficult for him to sleep and the consistent lack of sleep was wearing on him. Some of it was total crap, like when he said I only felt bad when there was somewhere or something he wanted to go or do and I always felt fine if it was something I wanted to do. That was crap and it hurt. I would’ve loved to play in the yard with my boys or go to their soccer or baseball games but I couldn’t be in the sun or far from the bathroom and couldn’t stand for long periods of time. I would’ve liked him to handle things differently. I would’ve preferred to have constructive conversation but we aren’t good at communicating. I let his rant go on for a few months. It was a miserable few months but I had so much guilt over everything I’d put him through. Even though it wasn’t my choice or my fault, I was, nonetheless, the cause of his pain.

The strife and the stress didn’t help my recovery. I had several complications in addition to the gastric bleed, I was in and out of the hospital so many times, my then 5 year old asked me on one of my ‘visits’ home from the hospital “Are you staying here this time or just visiting?” One day, I talked to my husband from the hospital and called him out on it again. I told him he was doing the same thing he used to do before hunting trips. I think he was so afraid of losing me he was pushing me away. It doesn’t make sense but sometimes people who are hurting try to hurt other people before they themselves can get hurt. I told him, “Choose faith or fear, they cannot coexist. Choose faith that God is here, He is in this, He is bigger than cancer. God loves you and our boys even more than I do and He has a plan for all our lives. You will be okay even when I die.” Being the numbers man that he is I knew this would help; I told him “Statistically, 10 out of 10 people die. But until I actually do die, you have to choose between faith or fear. Not just faith that I’ll be healed, but faith that GOD IS BIGGER than cancer and LOVE is bigger than cancer. Or you can choose to live in fear of the pain that you will feel when, someday, I die.” I told him if he wanted to choose fear that I’d be going to my parent’s house when I was released from the hospital because I couldn’t live in the anger and crap that we’d been living in for the past few months. He said “Come home.”

You Have Cancer


By Tina Seymour

“You had cancer. You understand what I’m going through.”
Yes. And also, no.
No, I don’t.
If you’re talking about the big picture of cancer…the finding out…the gut check when it feels like you’ve been kicked in the ribs by a mule. The momentary silence that descends…ears ringing…floor looking a Hell of a lot closer as you grope behind you for something to hold onto so you don’t face plant on it…sinking to your knees at the same time that you have the thought “when was the last time I swept this damn kitchen floor? These are clean jeans I’m wearing.”
Then yes. By all means, a resounding yes.
A thousand times, yes.
But after that initial first few minutes…I have no idea what in the heck was going on in your mind.
Were you thinking about your kids…your parents…your siblings…your work (please tell me that work didn’t cross your mind at that moment).
Ok. I admit it. Work crossed my mind.
It did.
Don’t judge me.
I was starting a new job in 5 days, had just been told I was going to have surgery…and was trying to figure out how to break the news to my brand spanking new boss that I wasn’t going to be there for orientation next Monday.
Hey, those bills still needed to be paid…cancer be damned.
My dogs were crawling all over my lap…and for one heartbreaking moment…I realized that, unlike the multitude of animals I’d had to say goodbye to over the years…they might actually be the ones to mourn me instead of the eventual sad goodbye that I’d thought would one day come.
I don’t have kids…and the thought of that…not having heirs or legacies to carry on in my stead and give all the crap I’d accumulated over the years…was sobering.
I looked around me at all that CRAP…and realized…I’d wasted half my life chasing degrees…things…stuff.
And when I finally got to the point where I should be enjoying it…I find out that my time may have run out.
I don’t know who you called first…or if you even called anyone that first hour after you heard the phrase that would forever change the way you looked at…well…everything.
Did you walk to the bathroom…look in the mirror…and think about the future?
Or did you think of the past…of missed opportunities…lost chances to spend with loved ones…risks you didn’t take because you were too afraid of the consequences if you failed?
Did you realize just how crazy you’d been to be so damned AFRAID your whole life?
Or did you see the news of your diagnosis as a culmination of those fears?
Yes, I had cancer. I had surgery. I had a long, slow recovery that has forever left me with scars.
And now, now I hear that you are taking the first steps of a journey that I am many miles along.
My heart hurts for you. There is an aching in my chest for your family, your loved ones, your babies…no matter if those babies are human or fur balls…they are your babies. Your life. Your heart.
You’ve made an indelible impression in the lives of so many people…and for you to vacate that impression…or for even the CHANCE of that happening to be a factor now…
It isn’t fair.
Yes, I had cancer. I once stood in the shoes you are now tentatively stepping into.
I was scared. I was angry. I felt alone. I felt confused.
I felt like I wanted to come out of my skin at times…
I felt restless…wanting to start…to do SOMETHING.
To scream…to run…to stop…to live.
I wanted to live.
Only this time, I wanted to live with the knowledge that my time on earth may be cut shorter than I expected. That one morning, I would wake up, make plans for a lunch with friends …the biggest concern of the day being whether or not my hair would fall flat in the 99% humidity before I reached the cool recesses of the air conditioned restaurant…only to have that day, too, cut short by a phone call that carried more weight, more seriousness in it than the innocent ringing of the phone promised.
I wanted to rewind my life and start over…only this time…I wanted to do it with an urgency…a knowledge that I didn’t have that shitload of time to get things done that I’d always assured myself I had.
I wanted to…get things…done.
Amazing that I finally cured my tendency to procrastinate only after I found out I had cancer.
That is my story, my emotions…that curious amalgam of craziness and panic and fear and anger and hysteria that hit within the first five minutes of hearing the news.
And it took six years for me to unravel that small segment of time enough to fully explain it to someone else.
Yes. I had cancer. I am a survivor. I have been living for six years with that nagging, deadly whisper in my ear…that little damn devil sitting on my shoulder…the one who tells me every morning that he may return…and this time…he may not be so generous in his decision to be tamed…to be overcome with the surgeon’s knife.
Yes. You have cancer.
In this, we are the same. But after that first five minutes of learning of our diagnosis…our paths diverged.
I went my way.
You will also go your own way.
Like two jet airplanes veering off…we have to fly this one alone…surrounded by tens of hundreds of others who think that we are on the same journey.
But the worst part of cancer is that no one person’s battle is the same.
We may have the same diagnosis…the same surgery…the same meds…but we are still going to fight different fights.
Yes, I had cancer.
And now, so do you.
But on the other side of all this fear, this emotion, and this pain…in this fight, even though it is the most personal of all personal battles…there is hope.
There is companionship in the fellowship of others who have walked their own paths.
Thousands…hundreds of thousands…have heard those words you and I have heard.
Yes, we have cancer.
We have all made the decision to not curl up in some corner of our home in a fetal position and let the cancer cells that had the NERVE to grow into a threat in our bodies win this one.
Not this day.
Not without one Hell of a fight.
Yes, we have cancer. And while I cannot fight this battle for you, I can offer you my shoulder to lean on…my back to press against yours as we face the same demons surrounding us.
Yes, my friend. As hard as it is to hear…it is just as hard for me to say.
You have cancer.
Now, what are you going to do about it?