Category Archives: cancer

What’s Happening??

Sorry for my long silence, friends and readers. Last fall, I was feeling hopeful. My husband had been enrolled in one of the most exciting clinical trials in cancer. It was for one of these PDL-1 immunotherapy drugs that everyone is gushing over as a breakthrough treatment. Indeed, some patients have had a phenomenal response and have gone into a seeming remission.

Unfortunately, Felder was among the 50% of people who did not respond to the drug. He tried three more types of chemotherapy, and finally this week, he entered into home hospice. He is too weak to try anything else.

I told him I was still praying, but obviously my prayers weren’t doing a heap of good, maybe I should stop.

He grabbed my hand and said, “DON’T STOP.”

So, I told him despite all medical evidence, I will continue to ask for a good old-fashioned, “Praise Jesus,” rock-n-roll miracle.

When I think, “Well, why should I get a miracle when so many others don’t?” I just ask God to give one to everyone who asks. The world needs more miracles, don’t you think?

On the Day You Were Born

100millionlogoThe morning after his surgery, I woke up crying and puking simultaneously. What to Expect says vomiting in the third trimester is normal. (Well, I think it did. In retrospect, I was kind of out of it.)

On Tuesday, I called in sick from work. I felt spacey. Anxiety, I thought. Only five days previously, I’d been to my 32 week check-up, and everything was fine.

On Thursday, I went to therapy. What a dreary session. Talking about everything that had gone wrong and what might happen next had upset my stomach. I couldn’t eat anything, which was odd because at that point in my pregnancy, I ate like a 15 year old boy.

My husband was home by that time, lying in our room with a pain patch.

I slept in the back bedroom, so I wouldn’t disturb him. I missed our previous life. Happy in our own bed, in our own place. My mom was visiting us. She knew I needed her.

“Mom, will you stay with me tonight?” I asked. I didn’t want to be alone. I fell asleep and woke up around midnight. Mom was dozing at my feet.

“I don’t feel well,” I told her. I googled my doctor’s name, but couldn’t find his phone number.

I went to the bathroom, held my upper abdomen, and thought, “This pregnancy feels toxic.”

I gingerly lowered myself into bed, and that’s the last thing I remember.

They tell me I had a grand mal seizure caused by a sudden spike in blood pressure. It’s called eclampsia and is quite rare these days. When she noticed me convulsing, my mom ran downstairs to wake up the house and call an ambulance. When she came back, I was covered in blood. I had nearly bitten off my tongue.

(Months later, all you Downton Abbey fans will know that Lady Sybil died in childbirth from eclampsia. Who knew I was so chic and cutting edge? Most women have pre-eclampsia. I did not. I’ve told my story to several doctors, and they all say it was a weird presentation. No one could have predicted it. Yeah, we’re special.)

Anyway, we live a block from the hospital. It was the shortest ambulance ride in the history of our town. Within an hour, my husband was in scrubs, in a wheelchair situated at the foot of my unconscious body, while my doctor performed a C-section to save my and my daughter’s lives, pausing only to sew up my tongue so I wouldn’t choke on the blood.

My husband told me that little Kella—her name Irish for “warrior”—emerged from behind the surgical screens, cried and kicked the doctor before they whisked her to the NICU.

“Feisty little thing,” they all said approvingly. “She’s going to be fine.”

It would be a few days before they could say the same about me.

I remember waking up in a dark room, with a morphine drip and a nurse asked if I knew where I was. I must have said no.

“You are in the hospital. You had a seizure two days ago. You had a C-section. Your daughter is fine. She is in the NICU.”

The piece of my brain that was still functioning was like, “WHAT? OH MY GOD!!!!!”

But all I could muster was a moan, and I soon fell back to sleep.

I must have slept for days. I’d wake up from time to time and see my mom asleep in the recliner at night. My father-in-law sat there in the morning, and my mother-in-law took the afternoon shift. My husband sat with me, too, but I don’t remember it.

He told me later that I woke on one occasion, and he asked me if I was in pain. I looked him in the eyes and said, “Yes, I have blood coming out of my vagina,” or “Yeth, I haff bwood comin out o my vadyina.” Alarmed, he called the nurse.

That story makes me laugh.

For a time, my family worried that something terrible had happened to my brain. I wasn’t making any sense. I was barely responsive and when I tried to communicate, they couldn’t understand a word I was saying. The doctors assured them that I was on heavy duty meds, and my tongue injury had caused my sudden speech impediment.

Five days and a glorious shower later, I was me again. Well, a fragile, frightened me, but off all the anti-seizure drugs that had made me a shell of my former self.

And I was pissed! My doctor walked in my room and said, “Boy am I glad to see you again!”

He must have sensed by my dramatic scowl that I was feeling sorry for myself. I had missed my daughter’s birth. She was in the NICU, and would be for at least another month. My husband and I were both in wheelchairs at the moment. He was still unemployed and in terrible pain, and there was still that “curious tumor” to diagnose.

“Look,” my doc said, “You have every right to be mad about all this, but you should know, it might not seem so, but you are a lucky woman. 10% of women in your situation never wake up again. Things were very touch and go for you for a time. You are lucky to be alive, and your daughter won’t be in the NICU forever. She is going to be fine.”

I hadn’t realized how close to death I’d come. It must have been the post-partum hormones, but I suddenly felt euphoric.

“My God, WE WERE ALL ALIVE!!” I wanted to rejoice.

Funny how emotions are. Mine were everywhere.

Your 100 Million Prayers for Cancer

Lotus Temple, India

Lotus Temple, New Dehli, India

I had this idea. Why don’t I ask all the people who are praying for us to post photos with a sign that says “100 Million Prayers for Cancer.” Wouldn’t that be neat?

I can just envision all the fabulous photo opportunities. “I’m going to launch today,” I think.

Days pass. “Problem is, “ I think to myself, “I don’t know how to do it. Maybe I’ll get some student to do it for me. I’m too busy.”

I called an old college friend of mine, who I haven’t talked to in ages for advice. She’s great at social media stuff. “What are you waiting for?” she finally asked.

“I don’t know,” I thought. “To plan everything just right? To feel confident? What if I mess up? What if I look stupid?”

Then I thought, “Who cares?”

You know what? We get so caught up in how we look to others—OK, I get so caught up in how I look to others that I lose track of what’s important sometimes.

When it comes down to it, I really don’t care if everyone in the world sends me a photo or says a prayer. I just want my husband to get better. I want his cancer to go into remission. I want cancer researchers to come up with more breakthroughs. I want more patients to have access to clinical trials and new medicines. I want cancer to go away!

Today is the 10 year anniversary of when my husband and I first met. I want another 10 years! And then another, and another and another! I’m greedy for time.

I like to remind myself that all of my dad’s doctors said he couldn’t live one year, let alone the 15 he actually did. Dad walked me down the aisle on my wedding day! “Impossible!” they all said. I dream my daughter will have that same joy.

I’m calling this idea 100 Million Prayers for Cancer, but I don’t think I actually need 100 million prayers to get God to listen to me. I don’t need this to “go viral” in order to have a miracle (or not.)  Do I really need people to pat me on the shoulder here? No. I’m over it. There are more important things.

Cancer is something that regardless of what you believe or don’t believe, whatever your politics, your culture, your nationality, your age, how you look, how much money you have, or where you live— we all can agree that CANCER HAS GOT TO GO.

So, wherever you are, please say a prayer or send positive vibes, that cancer will finally get its cure. And while you’re at it, please pray for my husband’s healing and for everyone out there, whether you know them or not, who is fighting this crazy, scary battle.

Underneath it all, this is what matters. This is what we all share. Love and fear and loss and loneliness. We forget that we’re all connected, that we’re not alone.

Please post a photo in my gallery with a sign that you’re praying. I guess I’ll start a tumblr site soon. Bear with me. I’m a little technically challenged.

Thank you.

If you would like to do more than pray, please feel free to make a small donation, or heck, if you can afford it—a large one, to Memorial Sloan Kettering Cancer Center’s rare kidney cancer research fund.

Please post your photo on 100 Million Prayers’ facebook page, or tweet #100millionprayers. 

The Gene Sequencing Plan is On! Please Pray We Find the Key.

For months, I’ve been calling the hospital where my husband had his surgery. “I want to have the tumor sequenced.  Where is the rest of it?” “I don’t know,” or “I don’t know, I think we already sent out all the slides for diagnosis.” Always a negative response, or an unreturned call. It was so discouraging.

During this time, everyone I spoke with told me story after story about tumors that were discarded after the surgery, making genetic sequencing impossible for so many. This made me feel certain his tumor was gone. I felt almost foolish for trying.

It finally occurred to me that “I don’t know” is not a definite answer. I decided to give it one more shot. With almost no hope left, I asked my husband’s oncologist to help me speak with the right person. He did.  More confusing phone calls ensued, but I worked my way up the food chain to the head pathologist at Columbia.

Imagine my delighted surprise when I found that the rest of the tumor is still at the hospital! I also learned that MSKCC already ordered 15 more slides of my husband’s tumor and healthy tissue back in March. Evidently, his cancer is being studied somewhere. My husband signed up for every possible test and trial, so it could be in a variety of places. We’re trying to find out where it is. If possible, I’d like his doctor to keep an eye on this specific research, in case they find something that could help.

Anyway, we ordered the gene sequencing test the very next day! I simply had not made the right connections.

A company called Foundation One is mapping the DNA of my husband’s tumor. We hope they’ll find a connection with another cancer that has an effective treatment. We could come up with nothing, or we could “find the key.”

I’ve heard stories of folks that have had gene sequencing, and it didn’t help (e.g. Steve Jobs.) But then, you hear stories like this man, who had the sequencing; they found a similarity to another treatable cancer, and now he’s cancer free.

I don’t know if we’ll find something useful or if it will be a dead end, but I’m so grateful we can try.

Please keep praying or sending positive vibes that they’ll find the key to this cancer, and that the key will work. Please ask everyone you can think of to pray, too. I believe these connecting prayers and thoughts are vital. It gives me strength knowing that so many people are pulling for us. Thank you all so much.

 

Please continue to pray for the 30 others in Robert’s clinical trial, that they will be healed, too. Please pray the treatments will work. Please pray for all people with cancer. Please pray for the researchers and doctors, that they’ll finally have the breakthrough of our dreams.

The MSKCC Research on My Husband’s Cancer

I’ve received details about the research we’re supporting at Memorial Sloan Kettering. I had thought it would exclusively study my husband’s type of cancer (Papillary Type 2), but they are studying his type of cancer along with several other rare types of kidney cancer. The rationale is that these types of cancer are SO rare, that it would be difficult to get a pharmaceutical company to support a treatment for just one of them. The hope is that there will be a common connection between several of these cancers, widening the pool of possible patients. I’ve copied below the complete proposal. It’s pretty impressive, exciting stuff. I asked them for a few more details, and here’s what else I know. It DEFINITELY includes my husband’s type of cancer. (Unfortunately, since his tumor was removed at another hospital, they don’t have his specific tumor to study, which seriously bummed me out.) However, they have 100 tumors that they are going to gene sequence. Three of those tumors are papillary type 2 and seven others have not yet been identified, but they suspect are my husband’s type of cancer. I do not know the exact status of where they are in this research, or how much more money they need. (I guess that would be helpful to know!)

I wanted to let those of you know who have already donated what we’re supporting. If you haven’t donated yet, but were considering it, this could help you with your decision. It’s really happening, and you’ll understand why I keep reliving my story of losing and then finding our rental car key in Hawaii. It’s the same idea.

It’s impossible to guarantee that this research will help my husband. But, it’s the best thing we know to do. I believe in God and science (most days, both).

We donate, and we pray, and we enjoy today. Thank you for your prayers and support. If you look at our donation page, you’ll see that we’ve raised about $64,000 for MSKCC. That’s not entirely accurate because it doesn’t include the checks that people have mailed in. The real total is closer to $70,000, which is amazing!! What we give matters. Even small donations matter. You matter. I matter. My husband matters. The 30 people in his clinical trial matter, and all others with rare kidney cancer (and all cancer!)

Think of your donation as buying lottery tickets for those who just found out they won the “anti-lottery.” Cancer or misfortune could strike any of us at any time. Pay it forward. Pray for a cure.

MEMORIAL SLOAN-KETTERING CANCER CENTER

KIDNEY CANCER RESEARCH OVERVIEW

OVERVIEW

Memorial Sloan-Kettering Cancer Center (MSK) is the world’s oldest and largest private institution devoted to cancer. MSK’s mission is to carry out extraordinary patient care, leading-edge research, and transformative educational programs. Since our founding in 1884, MSK has played a major leadership role in defining the standard of care for people affected by cancer. This is a particularly exciting time for us as we look forward to building upon our groundbreaking research to provide more effective and safer treatments for our patients; to define strategies to help people reduce the risk of developing cancers they might be genetically predisposed to develop; and ultimately, to prevent the disease from occurring at all.

RARE KIDNEY CANCER RESEARCH AT MSK

Under the leadership of Dr. Robert Motzer, MSK is a leader in treating rare kidney cancers. We have been the predominant source of the data and publications that are driving kidney cancer understanding and treatment worldwide. MSK has made rare cancer research a top institutional priority, committing critically-needed resources and recruiting high-profile investigators such as Dr. James Hsieh, a world-renowned physician-scientist and medical oncologist focusing on kidney cancer.

Using our basic knowledge of rare kidney cancer, our goal is to gain insight into all forms of rare kidney cancer through long-term research and development, including papillary (or chromophil) carcinoma. As you know, this is a rare type of kidney cancer that can develop as individual or multiple tumors appearing either in the same kidney or in both kidneys. There are two types of papillary cancers, type 1 and type 2. Type 1 is more common and usually grows slowly. Type 2 papillary tumors represent more than one category of disease but, as a group, are more aggressive and may follow an unpredictable growth pattern.

Our cancer research efforts have all benefited from the sequencing of the human genome, which has provided valuable insights into the way genes function in normal tissue, and what goes wrong in cancer. Our increased understanding of cancer at the molecular level is what has yielded remarkable new technologies, diagnostic procedures and new drug discoveries that are resulting in more effective therapies and clinical interventions.

MSK has established an efficient infrastructure to quickly absorb work related to rare kidney cancer. This includes resources such as a tumor bank and the High-Throughput Screening Facility, an exceptional, industry-grade resource that can test thousands of chemical compounds quickly against specific cancer targets.

Biobanks are crucial to our research endeavors in two ways. First, they provide inputs for the gene-based and protein-based studies that are involved in developing targeted therapies and improved diagnostics. Second, combined with patient records, they provide an invaluable resource from which to undertake correlative studies on patient outcomes.

MSKCC’s leadership in rare kidney cancer research stems from collecting specimens of the majority of kidney cancer patients seen at MSK since 1992. This resource is now the largest and most comprehensive in the world – allowing investigators to ask crucial research questions about history, staging, pathologic features, prognostic indicators, and identification of high risk patients.

Based on experience, we expect our sequence efforts to find many mutations that have occurred during the formation of the cancer, from which only some will be important in promoting cancerous growth. Those important mutations will usually occur frequently in the disease. Sequencing tumor and normal DNA from as many patients as possible will allow us to prioritize mutations that occur in patients and validate them further.

Once a specific molecular mutation has been identified as meaningful in a cancer progression we can attempt to target the mutation with existing or new therapies. Clinical trials are the testing ground for treatment effectiveness and toxicity of such therapies. Of course, clinical trials require several layers of approvals and take a long time, often requiring studies on necessity, efficacy, risks and safety before being ready to present the study to the institution’s own Internal Review Board (IRB). All of this takes place before we can present the study to the Food and Drug Administration (FDA) for approval.

Clinical trials are particularly difficult to organize for rare conditions such as rare kidney cancers because multiple clinical institutions need to coordinate in order to enroll a sufficient number of patients. It is far simpler to plan the scientific, logistical, regulatory and statistical elements of a clinical trial within one hospital or cooperative group. Fortunately, in large part due to a generous donor like you, over the past year Dr. Hsieh has embarked on building our collaboration with all of the relevant institutions world-wide to enable this work.

CONCLUSION

The R. F. Williams Papillary Type 2 Kidney Cancer Research Fund will help to expedite the development of targeted therapies in order to provide more individual-based treatment methods. Thank you for your generous commitment to kidney cancer research at MSK.

Robert Motzer, M.D. is a board-certified medical oncologist with more than 20 years experience dedicated to improving the lives of patients with genitourinary tumors. His primary area of expertise is kidney cancer (renal cell carcinoma) and testicular cancer (germ-cell tumor). In addition to providing patients with the highest standard of medical care, he has led more than 50 clinical trials in patients with kidney cancer and testicular cancer, including national and international multicenter clinical trials.

Dr. Motzer’s research has helped to identify three targeted anti-angiogenesis drugs — sunitinib (Sutent®), temsirolimus (Torisel™), and everolimus (Afinitor®) — as effective first- or second-line treatments for patients with advanced kidney cancer. He has also helped to develop a system to aid in the prediction of treatment outcomes for patients taking medications for advanced kidney cancer; this risk system is widely applied by physicians internationally to direct the care of patients.

On a national level, he works to improve the quality and delivery of cancer care for individuals diagnosed with kidney cancer and testicular cancer through my healthcare policy and advocacy activities. He is the chair of the National Comprehensive Care Network Kidney Cancer and Testicular Cancer Guidelines Panel.

James Hsieh, M.D., Ph.D., is a renowned physician-scientist and medical oncologist who focuses on kidney cancer. Dr. Hsieh received his Ph.D. at the Johns Hopkins University and before joining the MSKCC he held faculty positions at Harvard Medical School and Washington University School of Medicine. With Dr. Motzer, they founded the MSKCC translational kidney cancer research program (TKCRP). After its inception in the early 2011, TKCRP has rapidly expanded its research agenda to include generation of new kidney cancer cell lines, establish human in mouse kidney cancer models, develop novel treatment strategy, and initiate cell death mechanism-based clinical trials. Their mission is to decode molecular bases underlying treatment response and cancer metastasis, and develop personalized treatment regimens for kidney cancer patients.

The Hsieh laboratory has made landmark findings in cancer biology. Dr. Hsieh and his team revealed that the oncogene MLL is regulated by site-specific protein processing, leading to purification of the responsible enzyme, which they named “Taspase1”. This discovery uncovered a novel class of enzymes. Taspase1 cleaves its substrates to enable fundamental biological events that dictate cell fate, cell cycle, and stem and cancer cell biology. Recent studies in the Hsieh laboratory suggests that Taspase1 can serve as a novel anti-cancer target, which leads to a joint venture among top medical institutes and NCI for the development of Taspase1 inhibitors for cancer therapy.

What to Say to Someone Who’s Going Through Hell (Part 1)

Nothing feels more socially awkward than going through tough times. It’s hard to admit to myself and the world that some of my wildest nightmares, not my wildest dreams, have been coming true.

It’s disappointing. Who wants to be “That poor family with the sad story?” I don’t.

Contemplating my husband’s cancer makes me feel overwhelmed, vulnerable and strangely shy. I have absolutely no idea what to say to anyone. (Which if you’re one of the folks waiting for me to call or write you back, um, that’s why you haven’t heard from me yet. Sorry.)

Based on my own experience, I’m sure you don’t know what to say to me either. I’ve seen others go through hard times, and I am ashamed to admit that sometimes I’ve let moments, months, years (!) pass by and have said nothing to friends and acquaintances for fear of saying the wrong thing at the wrong time.

Now that I’m going through one of the biggest challenges I’ve ever faced, I would say that I’ve loved hearing from every person who’s thought to reach out to me. There’s no bad time to contact me, as long as you don’t care if I’m extremely slow at responding.

I know there are no magic words. I’ve appreciated receiving simple, heartfelt thoughts like, “I think of you often. I’m praying/sending good vibes, or I want to help if I can.” I’ve enjoyed funny stories, inspirational quotes, and reminders that good things can happen, too.

I think the best thing you can say to someone going through hell is to just say something, even if it feels like it took awhile.

Now, let’s see if I can take my own advice and pick up the phone.

 

Tomorrow I will be posting Part 2, written by a guest blogger—Star Jimenez Johnson, a friend “who’s been there.”

Please remember to continue to pray for my husband, his researchers, and all others who are facing cancer, serious illness and feelings of hopelessness.Thank you.