Mom Home From Rehab 2016

Mom is home from rehab. She's moving too so her wonderful friends are over helping her pack up.

Mom in rehab 7/9

Bob hanging out with her in rehab 7/12

Girls helping her pack up 7/15

Mom in Rehab 2016

My mother was first diagnosed with kidney cancer in August 2013, the same kind of cancer my dad had. It was Stage I or II because it was contained in the kidney, She had surgery to remove the kidney in October 2013. She got a specialist oncologist at Hackensack hospital. She had normal follow-up scans in June 2014. In January 2015 CT-scans showed that her cancer had returned.

Spoiling the kids with plantain chips and cookies in rehab

She tried several treatments: #1- In February 2015, sunitinib malate (Sutent). She had bad side effects and it didn't do much. #2- In mid-June, she did a Phase II study of axitinib (Inlyta) + Dalantercept (or the placebo for Dalantercept). She had really bad side effects from the treatment. Her August scans showed a cancer increase. #3- In September, they put her on a IV drug combo of temsirolimus (Torisel) and bevacizumab (Avastin). She had mild side effects compared to her reactions to the other drugs. Her November scan showed no progression and some shrinking of the tumors.

In mid-March 2016 her scans returned that the bigger tumor on her side had grown though the other little ones hadn't. Doctor suggested she try something else. A week later she went on Drug #4- nivolumab (Opdivo). Nivolumab is a type of immunotherapy, which stimulates the body’s immune system to fight cancer cells. Nivolumab blocks a signal that cancer sends to prevent your body's activated T-cells from attacking the cancer. It's purpose is to stop the cancer from blocking your immune system.

In June scan showed a lot of growth so she was changed to a combo drug #5- Lenvatinib (Lenvima), which targets VEGF,  combined with everolimus (Afinitor), which targets mTOR. (As I explained in an earlier post, VEGF is a protein which helps cancer grow blood vessels, and MTOR is a protein that makes cells divide and grow.)

On Sunday, June 24, she checked into the emergency room with stomach pain. The doctors in consultation with her doctor decided she had an infection, treated the infection, and tried to figure out what it was. Though she got over the infection they didn't know what it was nor did they solve the issue of her pain directly, instead opting to put her on more pain medication. With Zelmy's assistance, she moved to a rehab on Thursday. Rehab is going well, and hopefully she's getting out next week.

With Zelmy who is awesome.

Mom's Kidney Cancer Update 2015

As most of you know, week after I found out I was pregnant with Miranda in August 2013, my mother was diagnosed with renal cell carcinoma, the same kind of kidney cancer my dad had, which was horrific and shocking. It was Stage I or II because it was contained in the kidney, though it's measurement and other factors put it in between Stage I and II. She had surgery at Valley Hospital in October 2013, to remove her affected kidney and tumor. I encouraged her to get a more hardcore oncologist after that and she started seeing Dr. Alter at Hackensack hospital. She had regular blood tests and scans to make sure the cancer wasn't back.

Things were okay for a while. She had normal follow-up scans in June 2014.

In January 2015 CT-scans showed that her cancer had returned. She numerous spots and one large tumor where her kidney used to be.  She found out on February 16th, and shortly thereafter had MRIs on her pelvis. She had a biopsy of the large tumor on March 4 to confirm that it was kidney cancer and before proceeding with treatment.

On March 11, we met with her oncologist to discuss treatment options. The tumors she has cannot be surgically removed because they are on blood vessels. Surgery would be very dangerous, and probably not effective given the number of tumors. Chemo and radiation typically do not work on kidney cancer. Sometimes if they're desperate enough they will use some form of targeted radiation, but as I experienced with my dad, this largely just resulted in more pain and no improvements.

She agreed to go on a randomized phase II trial studies how well cabozantinib-s-malate (Cabometryx) works compared to sunitinib malate (Sutent) in treating patients with previously untreated kidney cancer that has spread to nearby areas or other parts of the body. We were hoping for the Cabo but she got assigned Sutent. Sunitinib is a protein kinase inhibitor. Protein kinase is a type of chemical messenger (enzyme) that plays a part in the growth of cancer cells. Sunitinib blocks the protein kinase to stop the cancer growing. It can stop the growth of a tumour or shrink it down. Sutent didn't work for my mom. She also had really bad side effects.

In mid-June, Phase II study of axitinib (Inlyta), an FDA approved drug, + Dalantercept, not yet FDA approved/ or placebo. She had really bad side effects from the treatment. Axitinib is a tyrosine kinase inhibitor, which blocks certain proteins, tyrosine kinases, that signal to cancer cells to grow. Axitinib blocks different types of tyrosine kinase and is called a multi kinase inhibitor. It stops cancer cells forming blood vessels, which the cancer needs in order to grow. This is called anti-angiogenesis treatment. It's an "activin receptor-like kinase 1 inhibitor," whatever that means. I'm not sure if she got Dalantercept in the study or not.

In September, they put her on a IV drug combo of temsirolimus (Torisel) and bevacizumab (Avastin). Temsirolimus is an mTOR inhibitor. It blocks the effects of a protein called mTOR, often over active in cancer cells that makes the cells divide and grow. Temsirolimus is also an anti-angiogenesis drug. Bevacizumab is a different kind of anti-angiogenesis treatment that targets a cancer cell protein called vascular endothelial growth factor (VEGF, which helps cancers grow blood vessels).

She had mild side effects compared to her reactions to other drug combos, but you know, still not fun. Her November scan showed no progression and some shrinking of the tumors!

Mom and me at her weekly infusion treatment

Mom's Cancer Recurrence 2015

As I wrote about on the blog, in August 2013, my mother was diagnosed with renal cell carcinoma, the same kind of kidney cancer my dad had. It was contained in the kidney, so she had surgery in October 2013 to remove that kidney. My dad had the same surgery for the same reason in April 1999, and his cancer returned 11 years later so I didn't assume she was off the hook, and suggested she upgrade to a serious renal cancer oncologist, which she did.

With her grandbabies

The new oncologist had her get scans every 6-months, and two scans later, in February , we found out the cancer had returned. This time she can't have surgery, because when it comes back it's always stage 3 or 4. But as we already knew because of my dad, chemo and radiation don't work on kidney cancer either, so the general treatments are targeted therapies usually in the form of pills or IV drugs.

She enrolled in a phase II trial, testing Cabozantinib. We were hoping that she would get the new experimental drug, but instead she got the control, Sutent. Typically, Sutent the drug they'd put you on anyway, the "first line" drug. We were just hoping for something else because Sutent was so ineffectual on my dad.

If you want to understand more about the treatment, keep reading. Otherwise you can stop now.

Each drug has a generic name and a trademarked brand name. My mother is on sunitinib malate, brand-named Sutent. Sunitinib/ Sutent is an angiogenisis inhibitor. For malignant tumors to expand and metastasize, they must be able to form new blood vessels by a process called angiogenesis. Tumors overproduce “growth factors” that stimulate the development of new blood vessels to supply oxygen and nutrition. These include “vascular endothelial growth factor” (VEGF) and “platelet-derived growth factor” (PDGF). These growth factors activate certain proteins inside cancer cells to develope new blood vessels. This allows tumors to grow and to metastasize to other parts of the body. Angiogenisis inhibitors, such as Sutent, inhibit the growth of the blood vessels. Additionally, Sutent may shrink tumors instead of merely maintaining.

Mom's Kidney Surgery 2013

Mom's surgery yesterday went well. the doctors got her whole kidney and the tumor without rupturing the tumor. She had no complications. Now we just have to wait for lab results to see if she's "cancer-free" or if she'll need to take medication.

Mom, post-surgery

It was really sad being back at Valley Hospital where we lost my dad. I kept remembering things from back then. One thing I kept thinking about was how he was so tall his feet hung off the stretchers they use to transport people. I was constantly worried they were going to hit his legs and the tumor in his leg would hurt him. I was constantly warning the orderlies and blocking like a crazy person. I also kept thinking about the milk shakes we got him from the Cafe downstairs.

When they moved my mom to her room after she got out of recovery, the day nurse she was assigned recognized both of us right away. We spent so much time at Valley Hospital with my dad, and on so many floors (oncology, neurology, intensive care, urology, dialysis, ER) that even though it was three years ago, my mother's nurse recognized both of us. "I recognize you," she said to me, "where do I know you from?" Then turning to my mom, "I recognize you too."

You recognize us from here, from oncology, from dialysis; you recognize us because we were here with my dad.

My mom added, "I have the same thing as him."
"The same thing?"

It's a strange, hard life we're living.

Mom's Diagnosis 2013

August 14th, my mother had some pain and thought she might have kidney stones, so she went straight to the hospital. They diagnosed her with a kidney infection and gave her some antibiotics but also gave her a scan and sent her for another more detailed scan. About a week later, her doctor told her she had a mass in her kidney and she needed to make an appointment with a urologist to determine what it was. She had the appointment on September 5, and the urologist confirmed that she has renal cell carcinoma (kidney cancer) and that her kidney needs to be removed. So far we have no indication that it has spread, but the tumor will be sent to a lab for further analysis.

Obviously we're very disappointed about this news. It's particularly disconcerting that it's the same cancer as the one my dad had. In many ways it feels like we took a time machine back to 2010, which is the last year I'd ever want to visit. Still, I know she's really lucky that she felt some pain and went to the hospital right away, because kidney cancer usually presents with no symptoms until it spreads. We're also really hopeful that her surgery will go well, and she'll have minimal problems going forward.

 

Me and Mom at Ash's Barn Party in August

Her surgery isn't scheduled until October 9, and she's feeling okay right now, except she's a little tried. Mom has been trying to stay positive, enjoy her free time with good friends, and she's even adopted a healthier cancer-fighting diet in the meanwhile. She's had numerous family and friends offering to help her through the surgery and after. And my friends have been really amazing too, offering to help in every way possible. (Hint: Food for after the surgery. ;) Love you guys.)

Mom smooching James in July

Fade Away

This week is hard and sad and cruel.  Dad is no longer responsive. We're waiting when there's nothing good to wait for and no more memories to make.

This is my childhood friend Wednesday's song with her band Pigeons, who lost her wonderful mother three years ago, Fade Away.

Dad's Time

We don't know how long dad has left but it's matter of days now. He's in pain and he's suffering. He's on a lot of pain medication, so he's incoherent or asleep most of the time. But we figure that's better than him being in more pain.

To say that he doesn't deserve this is a vast understatement. He's a wonderful and generous person. For the 25 to 26 years that I've known him he exercised and ate well and encouraged me to do the same. He practiced yoga, meditation, and tai chi. At 61-years-old, he looks ten years younger.  He helped all his elderly neighbors. He gave money to people he didn't even know who needed his help. Even now in the hospital he worries about my mother and me, and even about the nurses. Some of the nurses have cried for him.

That's the easy stuff to explain. It's so hard to explain what he's done for me and for my mother. I can't speak to the entirety of my parents' relationship, but he is the kind of husband other people envy. He worked and he also cooked and ran the household chores. He was devoted and faithful to my mother for over 25 years. She tells the nurses and anyone who will listen that he never so much as raised his voice to her. The evidence of their mutual love is that my mother has been at his side every day all day throughout his illness, and she has never considered it one minute more than he deserves.

With mom in Charlottesville in 2007

My dad has always put me before himself. Without him, I wouldn't be half the person I am. I read the books he gave me, learned the big words from him, and followed him around the house to talk to him. I would talk to him about everything, from the possibility of alien life forms to boys and kissing. He chaperoned my enrichment trips. He came to my field hockey games even though I wasn't very good and sometimes he had to see me get hurt. He came to my concerts even though I was worse at music. When he got kidney cancer the first time in 1999, his biggest concern was that I be able to finish college. I was blessed that I got to keep him for another 11 years and that he was able to walk me down the aisle and dance with me at my wedding. (I waited for 30 years to marry a man who I thought was as wonderful as my father.)  He came to my graduations for kindergarten, eighth grade, high school, college, my masters program, law school, and to my bar swearing-in ceremony.  When I told him I was pregnant he cried with happiness and kissed my hand because he couldn't reach up to kiss me from the hospital gurney. At a foot taller than me, he has called me "Shorty" my entire life.

With me on Cape Cod in 2004

Occasionally, I explain to someone that my dad is actually my stepfather, but I never once heard him call me his stepdaughter, and not once did he ever make me feel like anything other than his child completely. When I look around I see that not only do I have a wonderful father, but I have a better father than almost everyone else. The expression, "you can choose your friends, but you can't choose your family," doesn't apply to us. We chose each other to be family. I love my dad.

Dad's Calcium and Growing Tumors 2010

So things have taken another turn for the worst. This Friday, dad had radiation on his leg. Since then, it doesn't seem to have helped, and his leg pain increased.  Saturday morning one of the oncologists told us that his calcium had gone up due to the cancer.  They gave him very strong medicine to reduce the calcium, but it's not guaranteed to work, and high calcium can lead to coma and death.  Sometime around the same time the oncologist delivered the news that all his tumors had gotten bigger.

Previously, the doctors had said that if the Sutent didn't work we could try other drugs.  His calcium has gone down a very small amount, but at this point he is not stable enough or strong enough to try another drug.  Due to the progression of the tumors it's not likely he will be able to try another drug.  His pain and other problems have increased.  We raised his pain medications.  The pain medicine puts him to sleep, and when he wakes up he's often in pain.  The ironic part is that he looks really healthy and handsome. My mother has been sleeping overnight at the hospital since last night, and I go for about 10 hours a day and stay overnight at my parents' place.  I'm going to be living here for the time being.

Update: His calcium came down, but it's a sign of the cancer progressing rapidly. He's weak and in a lot of pain and his kidney stopped working again.

Dad's Emergency Leg Radiation 2010

Dad has been in the hospital since Friday. His kidney improved its function on its own. The nausea and stomach problems he developed in the hospital also improved after my mother asked for a number of interventions. But during this time his leg tumor grew very rapidly and is pushing on the bone (also noted because my mother demanded someone look at his leg). The doctors decided to send him to emergency leg radiation surgery today at the facility where he had his brain radiation surgery done. This is his third leg procedure he's had done. I'm dubious because as a rule radiation does not work on kidney cancer, which is what he has in his leg.

This weekend, I watched Joel Osteen, as I sometimes do if I come across him while changing channels. He gave a sermon about God helping those that help themselves and ask for God's help. He gave the example of David fighting Goliath with the only weapon available to him- a stick to make a sling shot. The idea is that God makes an otherwise inadequate weapon powerful. So here we are, here is our radiation stick. God, this is the part where you step in and make it work even though it otherwise wouldn't. Please and thank you.

Dad Progressing in Rehab 2010

October 24, 2010:

Dad took a walk outside and enjoyed the sun

Dad and Mom

Dad's Kidney-Bladder Stint Surgery 2010

The urologist thought that a stint between his kidney and bladder might fix his problem. He had surgery early this morning. The surgery appears to have been successful. Mom is ecstatic. Dad seems to be in high spirits as well, making jokes and looking forward to returning to his non-intensive physical rehab.

Happy 10-10-10!

Dad's Mysterious Ailment 2010

So dad is still in the hospital.  They don't know what's wrong because he's still having kidney failure-like symptoms.  They wanted to release him yesterday because "his numbers look okay," but my mother knew he wasn't okay and argued until they ran more tests. She was correct.  His new test numbers are not great.  They don't know if there's a problem with the kidney, a blockage in the kidney due to blood clots, a problem due to the infection, or the theory that I am leaning towards that he is having side effects from Sutent such as swelling and blood clots.  The oncologist dismissed the blood clots part of my theory, but did agree that taking him off Sutent while they figure it out makes sense.

I was frustrated that the oncologist didn't realize that dad had been on the higher dose of Sutent for only 4 days. (Around the time when all of these symptoms started.) Let me explain why this drives me crazy.

Here is the way this works: Mom and I get here around 8 am or earlier and talk to dad about the night before, then we meet the new nurse for the morning shift and she fills us in on any events during the night shift (important because dad is on a lot of pain medication and isn't always accurate) and any blood test results. If we're lucky we haven't missed any doctors because some of them sometimes come before 8 am, and dad is neither the best advocate for himself nor the best reporter on what the doctor said.

On a day such as today where his problem is complex or confusing we can expect unscheduled visits from a general doctor, a urologist, an oncologist, and a nephrologist (kidney specialist). Each doctor only knows about his particular area, and can only offer tests and theories based on his areas. Let's say the urologist is here, and I have a cross-over question such as "can the problem with urination (urologist) be caused by the kidney cancer (oncologist) drug?" The urologist will promptly throw his hands up and tell me that's a question for the oncologist. No one can tell me anything even a little out of their specialty even when my question seems to require both specialties.

So when the oncologist comes in, here's what I want from the oncologist: I want him to be a master of all of my dad's personal oncology-related information. I don't just want him to know that dad is on Sutent, I want him to know the entire course of my dad's Sutent treatment, including the fact that he started a higher dose 4 days ago, and that's when the symptoms started.

I am an attorney, and my job is arguably less important than that of a doctor, because if I mess up, probably no one will die. But it would be unthinkable that I would not know all the facts of my case, because if I don't know the facts, how am I ever going to apply the correct law? So that's what mom and I do, we talk to all the doctors and 1) remind them of the facts in dad's medical chart, 2) form a unified theory based on what all the different specialists say to us, 3) ask them leading questions regarding what we think might be wrong, and when all else fails 4) mom just flat out argues with them that dad cannot be released.

Anyway, dad is getting a kidney sonogram right now and that will tell us whether he has a blockage and we'll take it from there. Kevin's mother is also on her way to visit us today so she'll come see my dad at the hospital too.

Update: He has a blockage in his kidney and will have a minor surgery to let the blockage pass. It may or may not work. All these procedures are extremely frustrating to my dad and our family.

Dad's Sutent Side Effects 2010

Dad was moved from rehab back to the hospital.  He was having some unpleasant symptoms, possibly from the Sutent, that looked the way the kidney failure looked.  After two days the rehab sent him to the ER.   Mom was there with him until 1:30 a.m.  He doesn't appear to have kidney failure, but he did have a fever and some of his other levels were of concern so he's staying over night.  His ct-scan showed no change from the last scan which is good since he's only been on the second round of Sutent for a few days.

Of course, in the meantime, his old job is in the process of changing insurance companies, so he's not showing up on either insurance and I'm trying to sort out the new insurance for my parents. This process is not fun considering that dad has many doctors and needs so much care.  I'm worried that a wrong move will mean much larger bills.

Update: Dad has an infection. He's staying at the hospital on antibiotics while they watch him.  He's going to keep taking the Sutent.  He's not feeling too bad, and he's eager to return to rehab which I think is a good sign.

Dad Back in Rehab 2010

Dad finally moved to rehab yesterday, now that the doctors are comfortable that his kidney is back to functioning well on its own. Dad was transferred to a different facility than before, because his on-going leg pain in his right leg prevents him from returning to aggressive rehab.

He no longer needs speech therapy because his ability to speak has now fully returned thanks to the second brain surgery. Though as result of that surgery, his hairdo is still very punk. He started being able to read on his own again about two days ago. And now he can sit up for an hour or two which he couldn't do in rehab before. He still can't walk much or without assistance. He worked on his left leg today, and will be working on upper body strength.

Because his kidney is working again he can also metabolize the kidney cancer drug Sutent. The lower dose had no effect and his tumors got larger. He will start on a higher dose today or tomorrow, and hopefully that will take effect.

Mom continues to be a superhero and helps care for dad 12 hours a day every day. That's a more rigorous schedule than even Big Law attorneys have.

Dad's Kidney Working 2010

After three days of dialysis and a little patient waiting, dad's kidney is working on it's own again. We are all tremendously relieved. My mother, who I am pretty sure is superwoman, is positively exuberant. Things are still a struggle but at least dad isn't immediately threatened. I'm glad I was able to spend the whole week with dad and with mom.

Dad's Dialysis 2010

We are not catching a lot of breaks here. The dye used in dad's second leg embolization caused his one kidney to fail. The doctors didn't even mention this possibility to us because he had already had a procedure with the dye and had no ill effect. That coupled with the news that his tumors had grown made for a bad weekend.

Finally the doctors decided to try dialysis for three consecutive days. Monday was day 1. I grilled the doctor before he started the dialysis machine on everything including why he was choosing one port spot over another. The doctor assured me that any risks were minimal, especially the way he did the procedure. I tried to explain to him that our luck was such that the most unlikely bad things were going to happen to us. The doctor started the procedure, and we discovered he was allergic to the regular dialysis chemicals. He had respiratory trouble and a team of people had to come in and treat him with a nebulizer and tons of Benedryl. Not good. One nurse said that in 19 years of working there, only one other person had ever had an allergic reaction to the normal dialysis. They changed him to a radiation-based dialysis (which they only had available because of that one other person with the allergy). He was extremely cold (and I have never seen him cold before) and uncomfortable throughout the procedure, but that seemed to be the result of the original distress.

The next two days of dialysis have been uneventful, but his kidney has not started functioning again. And without his kidney he also can't go back to taking the kidney cancer drug Sutent. But right now he looks good, and feels okay, except for the pain in his leg and the exhaustion he feels from all the other medication. Hopefully the doctors tomorrow have a good plan for us.

Dad's Second Leg Embolization 2010

Yesterday dad had another leg embolization on his most painful leg tumor to cut it off from the blood supply. The first embolization was done with wires and this one was done with alcohol. We went to Teaneck Holy Name hospital for the surgery because apparently they are the regional embolization specialists. The surgery cut off about 80% of the blood flow so it is considered successful. However, the actual alcohol is very painful, so he temporarily has more pain than he did before the surgery. He is on a lot of pain medication so his rehab is on hold. Hopefully once the alcohol exits his system, he should go down to less pain than before. The doctors also got his dangerously high levels of calcium down. Hopefully when he recovers he will be going back to some sort of modified rehab.

Dad's Second Leg Ct-Scan 2010

Since the weekend began, dad's leg pain has been at an all-time high and has made it impossible for him to continue with rehab to walk. He's on his way to the ER now to have the leg scanned again so that we can figure out if there's something we can do to alleviate the pain.

Update: More bad news. The tumor in his leg grew so we're trying another surgery to cut off blood supply to it. The tumor can't be cut out because it's vascular.

Spoke to Dad on the Phone!

Because he can talk again! (Though it's not 100% yet.)  If speaking to your parents whom you love isn't one of the happiest, most exciting things in your life, it's time to reconsider your attitude about life. Like right now.