Mom in Hospice- September 2017

Mom's cancer treatment was cut off recently because it had become ineffective. She had additional growths on her liver. There are no other kidney cancer treatments available that she hasn't tried.

Subsequently, Mom took a turn for the worse over Labor Day weekend, and her doctor sent her to the ER on Wednesday. Bob was with her all day Wednesday while they slowly decided to admit her to the hospital. Bob and I were in the hospital with Mom on Thursday and Friday. Friday night I moved her permanently to Long Island to be near me, Kevin, and the kids.

Mom's oncologist recommended hospice as the next step. She's past the stage where she can reasonably do any kind of assisted living arrangement. Mom and I weighed hospice against rehab and Mom decided hospice was better to manage her pain. Hospice is a type of care not a place. She's temporarily at a facility while we figure out how to adjust her pain medication and get our house set up to move with her in with us. She'll get hospice at our home as well once she moves in.

Kids, Kevin, and Mom


Mom took a selfie. Yep.

Kissing Nana on the way home.

Time in the New Maternity Wing 2014

Since we had James, the hospital built an entire new wing with all new policies. For example, after the c-section, we were wheeled to recovery with Miranda where I was able to start breast feeding right away. Her sugar test was done in the room with me. Three years ago, James and I were split up for nearly 4 hours after he was born even though there was nothing wrong with him.

Getting wheeled to Recovery while carrying Miranda- Can you see her?

In Recovery with Miranda

After a short stay in Recovery, Miranda went to the nursery for a little blood work and a quick check-up from our pediatrician. I was taken to the new maternity wing of the hospital, where every family has a private room. I felt like Beyoncé. This time, I didn't have to wait long for them to return a bathed and burritoed Miranda. I'm not sure if it was because I wasn't split up from her this time, because I actually went into labor this time (activating different hormones and whatnot), or just because it's my second child, but I was able to relax and enjoy having my new baby a lot more this time. I felt a lot more present than last time, and even blissed out. Kevin seemed pretty pleased too, especially once we were settled in our own room.

Prompt Miranda-burrito delivery to my Maternity room

Happy.

Squeal! Love them so much.

Mom was able to come visit Miranda in the afternoon. I think it was love at first sight. And even though Kevin is largely responsible for the baby's name, my mother had independently and coincidentally campaigned for Miranda. Granted, a lot of names were suggested to us over the course of the second and third trimesters, but still this one seemed to resonate especially strongly with both Kevin and my mother. (Who were not, I don't think, in secret communication with each other.)

 

Miranda and her Nana

One of the biggest treats this time was having James meet his new sister. He ran right up to her when he came into the room and seemed all excited. In the days since we've been home he's been positive towards her, and calls her "sister" instead of calling her by her name, but I think it's such a cute little quirk.

Kissing his sister.

First family picture! Feels like I've been waiting forever for this one.

There was also a momentary concern on Tuesday that Miranda might be jaundiced, so the pediatrician recommended some formula to combat it. This sparked an internal hospital brouhaha where my nurse called in the lactation consultant in order to stop me from feeding my breastfed infant a little formula. Three years ago with James, one of the nurses tried to guilt me into feeding James formula because of his weight-loss. I resisted (until I go home). Since jaundice is quite a different issue than weight-loss, I complied, but a quarter of an once later the pediatrician called and said the tests showed she was not jaundiced, so I stopped. Then Miranda spit up all the formula. Nonetheless, this sparked what felt like a day-long seminar in my hospital room with one of our pediatricians directly contradicting everything the hospital lactation consultant said and vice-versa. Not much progress in this area in 3 years. Since it's my second child, and I pretty much messed up everything about breastfeeding with James, I have been able to sort through the contradictory advice and breastfeed Miranda this time. Even though it's been "successful" so far, she has been cluster-feeding a lot and it's been extremely difficult. Looking forward to the part where it gets easier (except for growth spurts).

One more, because, cute:

Miranda at three days old (does look a little yellow).

In related news, I ate so much while I was in the maternity wing this time that it was basically funny. I would call up to order my dinner and then order what sounded like a meal for three grown men. Then I'd eat it all while Kevin watched in horror. My favorites were prune juice and Miyeok Guk (Korean beef seaweed soup). Seriously just amazing after having a baby. Nothing tastier in the world.

• Compare to time in the hospital with James

Off to the Hospital 2014

Early in the morning on Saturday the 19th, stuff started getting kind of real. Starting at 8 a.m. the contractions were 10 minutes apart all morning, but I didn't feel like it was a particularly big deal since they were mild and so far apart.  But by evening they were getting a little closer and a little stronger, and I told my mom she was on stand by....

In retrospect, maybe I should have called my doctor right away and they could have done a c-section, but I guess somewhere in the back of my mind I was still thinking that maybe a VBAC was possible since I never found out the baby's weight. Plus, even though this is my second child, I felt like a fist time mom - I'd only had contractions before when I was dehydrated from the norovirus, so for most of the morning I didn't know if it was the real deal or not. I thought contractions might last for a very long time or even dissapate.

Then around 5 or 6 p.m., James suddenly got sick with a 102 fever which made me feel beyond awful. I felt so bad for him but I had to leave all the hugging to Kevin because I was huge and contracting. And I was so hormonally worried for him-- I called the pediatrician immediately which is not something I usually do. I told him the whole story- including how I was in labor and we'd have to leave him soon.

Finally around 9 p.m. my contractions were sometimes about 5 minutes apart so I called my doctor's office to see whether they thought I should go to the hospital. My doctor said to go so they could see what was going on, so I called my mother and told her to come over. I felt really bad leaving James (1) when he was sick, (2) without telling him, and (3) on his birthday. At least I he was in good hands with my mom.

Picture right before we left for hospital (in between 6-minute contractions)

• Compare to going to my first c-section for James EXACTLY three year earlier in 2011

Hospital Tour 2014

Even though I'm delivering at the same hospital as I did three years ago, and it is the hospital I had to check into a week ago for norovirus dehydration, I decided to do the hospital tour this Saturday anyway.  Our hospital built new maternity facilities immediately after I had James so a lot of things have changed. When I had James, I had to share a room with one really noisy couple that invited their whole family over to party, followed by the unhappiest couple in the world that would complain basically every 5 minutes that they were waiting for a private room. I got to drag my IV past all of them to get to the bathroom. Back then to get a private room you had to pay hundreds of dollars a night. But now, thanks to a generous donation to hospital maternity, everyone gets a private room!

When James was born they took him away from me for 4 hours and they wouldn't give him back! I was as mad as the post-surgery-drugs as I was on would allow. Now all the babies are supposed to room with the mothers as much as possible. Here's a picture of the nursery- empty!

All the babies are with their mamas!

One change that's very sad is that when James was born I was able to donate his stem cells through a New York State stem cell foundation so that other children who need them for cancer treatment could use it. But the foundation no longer has an office in our hospital. I've been looking around the internet to see if there's a way I can still donate, but so far no luck.

Other than that, the hospital now recommends that mothers get vaccinated for pertussis (dTap) with each pregnancy so that the baby gets a little of the immunity. They also recommend that all the caregivers- dads, grandparents, and childcare get the booster vaccine every 10 years. I got my booster on Thursday, so I'm all set.

I'm all packed and ready to go have this baby! Kevin also spent the weekend "nesting." He built the double stroller (with James's help) and installed the car seat and generally looked around for anything else we needed to get ready. We're ready! 16 more days though...

• A tour of the same hospital, three years ago!

Stomach Bug Hits Hard 2014

Warning: This posts has a lot of vomit. If you have a weak stomach, don't read it.

As some background info, ever since Daylight Saving's time, James has been getting up earlier and earlier, and has returned to his early toddler bed habit of walking into our room to chat. He ruins our sleep and then falls asleep for nap in the afternoon if he's too tired, so he doesn't care.

Tuesday
On Tuesday morning, James kept us up from 4:30 to 5:30. So when James asked me for strawberries and grapes approximately 500 million times, I wasn't exactly in a zen place. But I explained to him we didn't have any and even showed him the inside of the refrigerator. James is not so spoiled that I ran out and got him strawberries that day, but he is spoiled enough that Kevin brought them home that night after work.

Being up all night doesn't bother him- he can take a nap any time!

Wednesday
On Wednesday, shortly after I got up, Kevin briefly put his coffee down on the bathroom sink because he was going to shower while I had breakfast with James. James ran right over to the coffee cup and spilled it on everything in the bathroom. He got time out and we started the day mopping up everything.

My 36-week doctor's appointment was uneventful, but Kevin took James to a bookstore, so for the first time I enjoyed the quiet solitude of a medical exam like it was another babymoon. It was lucky actually that I chose this appointment not to bring James, because he was probably pretty infectious so I spared a bunch of pregnant women from catching his bug.

At snacktime, I gave him a big bowl of half grapes and half strawberries. He's old enough that he picks the grapes off the stems no problem, so I assumed he'd pluck the leaves off the strawberries too. Not so much. So I told him not to eat the leaves, and he responded, "But leaves are yummy." Oh-kay.

So I started making a dinner I thought Kevin would particularly enjoy: Five-Spice Hanger Steaks with Stir-Fried Brown Rice. I was feeling really fancy, but it was clear that James was already not feeling so great. I asked him if he felt okay, and he said his tummy hurt, and I suggested the strawberry leaves were to blame. He huddled under some couch cushions and watched cartoons with a glum look on his face. I appreciated that I could actually cook without him pestering me in the kitchen though so I went back to that- when I started a grease fire. James didn't even bat an eye to the fire alarm. I stopped the fire and called Kevin down to turn off the alarm.

I had only gone back to cooking for a few minutes when James puked all over the couch. I was totally unprepared and had nothing to mitigate it at all. I called Kevin back down to help. It took us both a long time to clean up James and the living room. Including giving James a bath. Kevin then took him upstairs in his pajamas so he could finish some work and I could finish dinner. I sent them up with a bucket "just in case" but I think think was a rookie parenting mistake on our part. We thought he'd puked from overeating or eating the strawberry leaves so we thought he probably wouldn't puke again.

So while I resumed cooking dinner, James puked all over Kevin and the upstairs bedroom. This time, we rinsed James a little, and then I held him under kitchen-arrest while Kevin cleaned the upstairs and brought down everything that needed to be washed.

I had just finished serving dinner. Just finished. When James tried to escape so I picked him up. He puked all over me. We both had to shower.

Dinner was now cold, but Kevin ate his quickly, gathered the laundry and went off to the laundromat. That's right, we're having a second kid and we don't even have a washing machine. Sigh.  I put James to bed with a bucket and towels nearby.

Our cold dinner- Five-spice steaks with stir fry brown rice (not a picture of mine)

Thursday
James woke up relatively happy. We took it easy all day, but the fact that he didn't get sick again lent weight to our theory that he'd overeaten the day before.

James coloring with crayons and a coloring book Chrissy sent.

Friday
Everything was okay until Kevin left to go to Manhattan to sign books at his publisher's and watch the NCAA UVA v. Michigan State game at Madison Square Garden.

 

Kevin's view

I put James to bed, relaxed a little, and became exhausted super early. I went to bed and pretty much as soon as I was comfortable, I was up again throwing up. Since I've been throwing up a little here and there in my 3rd trimester, I thought nothing of it at first. But three pukes in, it hit me-- James had a stomach bug and I caught it. Nonetheless, I was still feeling pretty positive since James had recovered so fast that I'd power through it. Nope, I spent all night sick. This is not fun in the best of circumstances but when you're 9 moths pregnant and can't bend- and need more hydration than usual- disaster. I started having contractions. I downloaded a little contractions app on my iPhone and noted they were getting closer together and and longer.  I tried to sleep but I was a mess and had to keep getting up to throw up more.

Saturday
I was dying. I waited until James woke up (kind of a mistake since it took a while to reach the doctor) called my doctor's office, and as expected they told me to come into the hospital. They kept me waiting so long in admissions that I warned them I might throw up. They gave me a little pink puke pan and continued their slow paperwork. When they finished they took me in a wheel chair to labor and delivery triage. By then, the baby monitor machine showed that my contractions were 4 minutes apart. They told us we'd have to be there all day, and James was already being a pain so Kevin took him to Lukas and Sarah's and then came back. (James had a great day- more on that later.)

 

I was SO thirsty, and I couldn't drink anything. I was so desperate for the IV. It felt like forever and a day. It took them three tries to get the IV in my arm (I thought of dad). Finally by 9:30 a.m. the IV was in. But it's funny how when your worst symptom is under control, you move right along to worrying about the next. I was so queasy, and the doctors told me I would get Zofran to help. After the IV, I asked about the Zofran, and there was some confusion. First the nurse asked me who had said I was getting that, then when I asked again she said it wasn't in from the hospital pharmacy yet, finally they admitted the doctor had never called it in. But I am used to this sort of thing at hospitals; I have my stripes. (The nurse even asked if I was a nurse when she caught me reading my lab work.)

I finally got the Zofran at 11 am. I felt a lot better at first, then it wore off a bit. One problem was that I mainly felt better when I was sitting up, but they didn't want to let me do that because the the baby's heart rate would drop on the monitor. Lying down felt awful. Then I threw up water everywhere - the nurse did a very half-hearted job of cleaning it up. But then I really did start feeling better, and after a quick check-up they released me. After I got home the bug really didn't bother me anymore.

Though I feel horrible today and I'm not sure if it's leftovers of the norovirus, or just pregnancy rearing its cruel head. Oh well, 23 days to go.

5 Months Pregnant 2013

17 Weeks, November 14-20
We went to Queens on Saturday but otherwise took it easy this week.

Baby progress: Baby is the size of an onion. She has been kicking a lot! I even felt her from the outside once, so I think Kevin should be able to feel her soon.
Symptoms: Acid reflux, tired (still- although not as much), stuffy and runny nose.
Cravings: Fish! Juice.
Anti-cravings: Anything spicy
My Weight Gain: 7 pounds (Last time 9 pounds)
Compare to week 17 with James

leaves

18 Weeks, November 21-27
This week we flew to Florida to celebrate Andrew's 30th birthday in Key West! Unfortunately, Kevin had so much fun that he brought a hardcore cold home with him.

At the end of the week, Kevin felt the baby kick for the first time!

Baby progress: Baby is the size of sweet potato or bell pepper.
Symptoms: Headaches. Stuffy and runny nose. I have lots of tissues with me. Luckily James loves running them to the trash for me. (Hey, I'm not sick! Just pregnant.) Some early nesting. And when I go back from Key West- oh boy, I felt AWFUL. Such painful acid reflux, and so early still!
Cravings: Fruit juice
Anti-cravings: None

My Weight Gain: 9 pounds, Oh no. I'm almost on the same schedule as last time! I even started getting more exercise again lately. Sigh. (Last time 10 pounds)
Compare to week 18 with James

 

Key West, Nov. 23, 18 weeks

 

19 Weeks, November 28- December 4 
Thanksgiving! We got a tree this week and started decorating! James and I caught Kevin's cold. Boo. Like pregnancy symptoms weren't bad enough without a cold on top.

Baby progress: Baby is the size of mango! She has a vernix caseosa on her skin to protect it. She kicks a lot. Every morning she's kicking by 8:30 a.m. and seems to move around in response to James screaming or to me singing to James.
Symptoms: The acid reflux feels like knives in my throat. Sometimes I wake up choking from it. Bad headaches. Hip pain, and trouble standing up sometimes because of it. Super stuffy nose. I feel awful this week.

Cravings: Lime juice

Anti-cravings: Wheat bread- GROSS

My Weight Gain: 10 pounds (Last time 12.5 pounds)
Compare to week 19 with James

Thanksgiving

Five Months!, 20 Weeks, December 5-11

Baby progress: We had our 20-week hospital sonogram where they check everything about the baby in detail, and the technician and the doctor said everything looked great. She was 14 ounces which is normal size for 20-weeks, but they said that my file said that at my 12-week sonogram appointment at my doctors office they had moved my due date up a week (to 4/17), so really I was 21 weeks already. I protested this because I don't want my baby to come out early if I have to get a c-section again, but so far, I've been ignored.

This is usually the appointment where you can see if the baby is a boy or a girl but I already knew this time from genetic testing. Nonetheless we confirmed visually: the baby is still a girl.

Also, the sonogram technician said that my placenta is in the back this time which means there is less padding between me and the baby. She has direct access to kick my internal organs. She said that this likely explains why I could feel the baby before 12 weeks, and why her kicks and movements feel so much more intense than they did with James. So maybe she's not fated to be a professional soccer player like I thought. Or maybe she is.

Otherwise, the baby is about the size of a banana. She has working taste buds now, so hopefully she enjoyed Thanksgiving dinner, and isn't suffering too much from my new experimentation in the kitchen.

We also went to Ben's 1st birthday party this week, and had a fun visit from Casey.

Symptoms: Painful hips, trouble sleeping already-- I took out the "Things I miss" category for this pregnancy because it seemed a bit negative, and I really haven't missed anything so far (not even alcohol!) but this week I started to miss being able to lie on my stomach. It's okay not being able to do it for a few weeks, but not being able to do it for so long makes me want to.
Cravings: Rice pudding, strawberry ice cream, cinnamon, saffron, soy milk, cranberry juice, citrus fruits.... poor Kevin.
Anti-cravings: Spicy food. A lot of packaged foods gross me out too.

My Weight Gain: 9.5-10.5 pounds (Last time 12 pounds)
Compare to week 20 with James

 

Belly at 20 weeks (or maybe 21 weeks)

Today I'm 21 weeks! Or possibly 22 weeks, depending on whom you ask. Due date?: April 17-24.

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.

Time in the Maternity Ward 2011

Our family on Friday evening

James was born via c-section at 12:23, and they split us up almost right away. I had to go to the Recovery Room for the c-section, and they took him to the nursery to test his sugars because he was so large. Numerous attempts to get him back from the nursery failed, and I was getting pretty unhappy as the hours ticked by. And unlike, everyone else, I couldn't visit him in nursery because I was connected to so many tubes. We finally got him back when it was almost 4 in the afternoon.

Reunited at last.

The first evening in the hospital was very bad, due mostly to the fact that the nurse assigned to us was both inattentive and casually rude. I'm pretty sure at one point she implied that I was a bad mother because I wouldn't let my child have formula because I was trying to breastfeed. Can anyone even be a bad mother before her child reaches the ripe age of 12 hours old? Perhaps. But I don't think I was.

Believe it or not she managed to top this when I realized I was having difficulty breathing and she first acted dubious, then administered more pain medicine (a depressant for someone having difficulty breathing?), and finally at our insistence called a resident. To be fair the residents weren't all that helpful either, but by the next day they had figured out my blood count was low because I had lost a lot of blood. But you know, it wasn't so far-fetched that a woman who had major abdominal surgery might have a complication a few hours later, and if that complication is BREATHING, that seems like something not to dally over, because most people like to do that a couple times a minute.

I was very relieved when the day nurse arrived. She was a take-charge type. She was also super-militant about breastfeeding. She was followed by James's pediatrician who told me to ignore the nurses. He said that all babies lose weight so I shouldn't let the nurses scare me (impossible when you're sleep-deprived, medicated, and a first-time mom). He also said it didn't matter if I used formula or not, or used a pacifier or not, but that life would be easier if I used a pacifier. The lactation consultant came in and told me different things than the nurses or the pediatrician. To say that we were confused would be putting it mildly. And I was angry that the hospital couldn't keep its story straight at an already stressful time.

I'm not even going to elaborate on the horrors of sharing a room with another family whose baby would only cry when ours was quiet and vice versa.

Luckily, we had visitors who relieved a great deal of the stress of being in the hospital. Kevin's mom came back Thursday morning, followed by Jon and Briggs in the afternoon with some Jameson and coffee for Kevin's new daddy life.  On Friday my friends Chrissy and her husband Jason visited with a bag full of bagels for us and baby gifts for James, and finally on Friday my mother returned to help out and let Kevin go back to the house for a little while. We also got flowers and many calls from Ash and Janice.

Jon and Briggs visit on Thursday afternoon

Chrissy and Jason visit on Friday morning

Hospital Tour 2011

Kevin and I went for a hospital tour on Saturday with a bunch of other expectant parents, including one woman due this week and one woman expecting twins! The tour mainly consisted of sitting in a hospital conference room and having one of the maternity nurses talk about miracles and make strange analogies to the NICU being like Sully landing in the Hudson River.  We did that for about an hour and a half.

But it was still helpful because she walked us through what to do and where to go when we get to the hospital on delivery day. She also gave us a list of what to pack in the hospital bag/s. Even though that's available on numerous websites online, I like the hospital's list the best because it's very minimal. I was overwhelmed by the online ones. Now I can use the short list and see if there's anything else from the long lists that seems like a good idea as well.

Finally we got to actually walk through the maternity floor, but all the labor rooms were blocked by fancy construction to improve the floor, set to end by Mother's Day, which is of course way after I have our baby. And all the maternity recovery rooms were in use because they had a lot of labors that day, but I sort of peeked into one of the shared rooms. They look crowded to host me, Kevin, baby, and other guests, but the mom I saw was blissfully playing with her quiet baby so it still looked pretty great.

Then the best part of the tour- the nursery! I have sadly spent a lot of time in hospitals in the last year and I can assure you that newborn nurseries everywhere are on super-secure lock-down, so this was really a special treat.  They even had some boys that had been born just a few hours ago, basking in the heat lamps like they were at a fun nudist beach.  They were big for newborns and had dark hair so I could really imagine our little guy doing the same.

Not our actual hospital nursery because I would have been arrested.

Oh, and if any of you need extra motivation to come visit me after the baby is born, my hospital has girl scouts selling girl scout cookies in the lobby every Saturday. If I'm lucky I'll deliver on a Friday.

It's a boy!

I've been convinced the baby is a boy for weeks.  Before we went to the 16 week appointment Kevin asked me what if the baby turned out to be a girl?  I said it didn't matter because it was a boy. But at the appointment the doctor couldn't tell because the sonogram image wasn't clear.  She zoomed in on something that I couldn't see at all and said, "See that? Maybe it's a boy."  Kevin and I started laughing because that wasn't helpful at all.  Then she typed right on the sonogram "MAYBE A BOY??"  Um, thanks.

Well the 20-week sonogram clarified it.  The sonogram technician said Baby Clou is definitely a boy, and a doctor confirmed it. This will be the first boy in my maternal line in a long time- my great grandmother had two girls, my grandmother had a girl, and my mother just had me. My mother came to the sonogram with us and was weepy with happiness.  It's been a tough week for her too, so a little bit of happy baby news was nice.  Also, I'm halfway through the pregnancy now!

20 weeks sonogram profile with jazz hand

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'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 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 Brain Surgery 2010

Dad is scheduled for a "left frontal temporal awake craniotomy" at 7:40 a.m. tomorrow. I will update when he gets out.

Update: Surgery went well though it seems it was extremely unpleasant for dad.  He's in ICU for now being observed.

Dad Back in the Hospital 2010

Mom and I were concerned about Dad's progress after the Thursday seizure.  He wasn't regaining his speech and his right side was getting worse so we called his doctors and decided to admit him on Sunday.  We went straight to the hospital from Vermont.  They did a ct-scan that shows swelling.  I feel awful because I know he hates the hospital, but if he can get back to where he was on Wednesday, I know he'll be much happier.  Seriously, I know I said this already but visit your parents, hug them, and don't argue about unimportant things.

Update: Dad is getting an MRI today to determine whether he will need traditional brain surgery.

Dad's Embolization 2010

Dad is back in the hospital with metastasis in his leg and arm. Apparently they only scanned his torso and head before instead of a full-body scan. What? If any of your family members go through this, know that you are responsible for their care. You cannot just trust what the doctors and nurses are doing.

Update: One of the leg tumors was embolized providing pain relief and lessening the danger of rupture. Other tumors will be treated with the same kidney cancer drug (Sutent) as the other tumors that we already knew about.