Sunday, April 10, 2016

Chemotherapy, Part 1

Day 1. Thursday.

My first chemotherapy treatment. The morning was the usual chaos of getting 4 kiddos ready and out the door. I took Sierra to the bus stop. Keegan was hungry, so I nursed him for what I knew would be the last time, or at least the last time in a very long time. I cried a little as I looked at him. I'm worried about my own health, yes, but no longer being able to comfort and nourish my child is the most heart breaking part of getting myself well again.

My sweet friend Jill had agreed to watch my two littlest, so I dropped them off next and then took Kaia to preschool. I had made arrangement for Grandma and Grandpa to take over with Keegan and Aurora late morning and Kaia was getting ride home with her preschool buddy (thanks, Nick, for chauffeuring my kid home). 

I was on my way down into St. Louis city to the Siteman Cancer Center. No blood work today because I had just been there a week ago. I chatted with my doctor briefly and she told me that I was severely vitamin D deficient (it's an epidemic in this country, she said). I now have vitamin D supplements of 50,000 units to take once a week, along with 2 types of anti-nausea meds. 

I went to the treatment area but had to pump before we started since I was going to be there all day. 

It took 3 nurses and 4 tries to get the IV in. I have no idea why; I have "good" veins. Not off to a good start. First there are the "pre-meds", and intravenous anti-nausea and a steroid. Then my drugs. The combo is called ABVD, for adriamycin, bleomycin, vinblastine, and dacarbazine. Sounds scary, right? I had to first have a test dose of 1 unit of one of them (bleomycin, I think) because there's a pretty common allergic reaction. After the test dose, you don't do the full dose for 2 hours. Meanwhile, I get the other drugs. 

It was ... not how I would have preferred to spend my day. I don't do a lot of sitting still, but I did watch a movie and started sewing the binding on a quilt. Two friends stopped by to visit at different times, so that was nice to have them break up the day. 

Finally left for home around 4pm. 

Day 2. Friday. 

I had mentally prepared myself for my side effects of chemo to be much worse than they were. I had some serious dry mouth and a little bit of nausea, but nothing worse than morning sickness. I have two kinds of anti-nausea meds, but I didn't even feel badly enough to take one. The day went normally. A kind friend brought us dinner and Jason had to coach a hockey game, so I took all the kids to Sierra's soccer practice. 

Day 3. Saturday. 

I felt ... weird. It's hard to describe exactly how I felt but it wasn't normal. It wasn't horrible, but I felt like I was moving in slow motion under water, and I had had too much coffee. My face felt a little tingly, I felt a little wobbly. I don't know. I still had some nausea, but there were some things that I wanted/needed to do, so I took one of the anti-nausea pills just to make sure things didn't get worse. I managed to go to my quilt guild meeting (albeit an hour late) and then later, husband was coaching again, so I took all four littles to a soccer game. 

Day 4. Sunday. 

That's today. I feel dried out, even though I have been drinking a lot of water. And my jaw hurts. The pain is back in the mandible joint, especially when I bite down on something. That's annoying. Not sure if it's a side effect of the drugs or something else. 

Day 5. Monday. 

Mouth sores. I was aware that this could be a side effect, and it's annoying. Like a canker sore inside my cheek. Doing recommended rinses with baking soda/salt water. Yummy. 

Friday, April 8, 2016

All the feelings

I am not a crier.

I am a little unsettled by how many times I've teared up or shed actual tears in the past 24 hours. I have my first chemotherapy treatment today. In fact, I'm just finishing it up as I begin to write this.

I used my chemotherapy time to start the binding on a quilt. Most of the drugs are administered through my IV, but this one was pushed in my by nurse, Emilee. 

There's a lot to wrap my head around. I don't know how this treatment will affect my body and thus how I will be able function afterward. If I'm not my usual self, that means I'm not able to give my children my "A game," so I worry about how my treatment will affect them as well. From everything I've read and been told, Hodgkin's lymphoma is treatable. But it's still cancer. That's scary. Cancer's have a "5 year survival rate," and though it's never mentioned, that means there's also a "didn't survive rate." It's small sure, but it's still terrifying. I don't let my mind go there.

Yesterday, I received a bill for $7681. I was under the impression that I had already paid my out of pocket portion of nearly a grand, but this bill stated that I owe another $953. This was just for the biopsy. It doesn't include all the other preliminary tests (blood work, x-ray, CT scan). And I'm completely nervous about what the numbers for my actual chemo treatments are going to look like. Many friends have stepped up to help with this and for that, I am eternally grateful, but it's still a lot of money and debt has a way of making one feel heavy and tied down.

I am probably most emotional about no longer being able to breastfeed my sweet little 8 week old buddy. I know I am fortunate to be able to breastfeed, and I am thankful for the 8 solid weeks so far, but the fact that we're done, at least for now, breaks my heart every time.

But the tears have not all been for sad or scary reasons.

Last night, I posted on Facebook after I cried for real.

This morning I posted a photo with the caption, "This is it. The very last time I will nurse my little guy."

And after those posts, you, my friends and family, responded with such love and kindness and words of support that I cried again. These were happy tears because in this tough time, you have made me feel like it's going to be okay. You mean so much to me, and so many have already reached with prayers and good thoughts and helpful information, as well as financial assistance with our burden of medical costs and offers to bring meals and watch kids. I honestly don't know how I deserve this amazing community around me, but I am so thankful for you.

Saturday, April 2, 2016

Testing, testing, testing

This is not a sound check.

It is a health check, I suppose.

This week I had SIX doctor's appointments, leading up to starting chemotherapy treatments next week.

1. PET scan
2. Echocardiogram
3. Pulmonary function test
4. Appointment with a second oncologist
5. Chemotherapy education appointment
6. Financial counselor meeting

Considering the circumstances, I would rather that I didn't have a PET scan, however, the technology is pretty amazing. It works like this.

The PET scan was mobile. It arrived on a tractor trailer and was parked outside the medical building
I went to my appointment in the morning after fasting all night. The low blood sugar was important because I was then given a radioactive glucose called F-18 FDG. Active cells take up the glucose and the radioactive agent and thus can be seen on the PET scan. Seventy-five minutes after getting the F-18 FDG intravenously, I went through the scanner. Cells that were active/working at the time of the scan were obvious because they were glowing a lava red in the image.

I looked at the images with my doctor later in the week. The scanner takes cross section images of your body from top to bottom. The cancer was very obvious in the images, but the radioactive glucose could be seen in several other places. Breast tissue: my body was making milk. I am going to have to give up breastfeeding when I start chemotherapy, but this was a good test run for Keegan. I couldn't breastfeed for 12 hours while I waited for several half lives of the F-18 FDG to pass so it would be broken down. Good news, my little guy did well with a bottle. We also saw the radioactive dye in my kidneys and bladder as my body was getting rid of the chemical. I notice a couple other spots that were glowing (but not obviously lava red) and my doctor explained that I must have moved my arm during the scan, or was cold and shivered, so those muscle had to use some of the glucose for there functions.

The two other tests were to establish baseline function of my heart and lungs. The chemotherapy can occasionally have negative side effects that affect those organs and my doctor needs to know where I started so she has a means of comparison if there's a problem later. The echocardiogram is an ultrasound of the heart. I lay in a dim room while the pictures were taken. Good news, I still have a nice low resting heart rate from years of running. The pulmonary function test was 40 minutes or so of breathing in and out of tube connected to a sensor in different patterns. Fill the lungs as much as possible, blow out hard and fast, blow out long and slow, panting breaths, etc.

For the out of pocket cost of a pretty nice vacation, I got to spend about 5 hours total in various medical offices being tested. Next time, I'm taking the vaction.

Monday, March 28, 2016

When I was diagnosed with cancer

I have cancer. 

But Yoda says I will beat it, so that's what I plan to do. A cancer diagnosis is shitty no matter what it is, but from everything I've read, this type of cancer responds very well to treatment. 

How did I know it was cancer?

I didn't. I didn't really have any symptoms that concerned me. To be honest, I've probably had this cancer for a year. I had noticed some swollen, but still small, lymph nodes in the left side of my neck. I didn't think much of them. Lymph nodes swell, they go back to normal. But I wasn't ill and these were persistent. I finally decided to go talk to my doctor just to make sure there was nothing to worry about. That appointment was early last summer, but I had just learned that I was pregnant. My doctor wanted to do some imaging as a next step, but couldn't because of the pregnancy. She told me to keep an eye on them and come back after I had the baby. 

Fast forward through the pregnancy. Keegan was born February 8th, and two weeks later, I went back to talk to my doctor. Meanwhile, I noticed a very large lymph node on the right side of my neck that either wasn't there before, or had developed sometime during the previous 9 months. Toward the end of my pregnancy, I also started to experience a symptom that I would never have linked to the cancer. It wasn't until I started reading about it that I made the connection. Every day, at some point (usually at night, but not always) I have intense itching. No dry skin, no rash, no redness, just terrible itching all over: legs, belly, back, top of my head, occasionally arms and shoulders. I had also had night sweating, but only once in awhile and I just thought it was because of the hormone changes that happen with pregnancy. 

February 24: Appointment with my primary care physician
                      Blood panel
                      Chest x-ray

The blood work came back normal, but the chest x-ray revealed swollen lymph nodes not only in my neck, but also throughout my chest. The next step was a CT scan to determine the size, location and number of swollen lymph nodes. I scheduled a CT scan for my neck, chest, and abdomen.

March 2: CT Scan

The CT Scan report basically said "There are a whole bunch of enlarged lymph nodes in your neck, the largest measuring 4.7 x 2.8 x 2.4 centimeters." For reference, you can't usually feel the lymph nodes in your neck, unless you are fighting a cold or something, so nearly 5 centimeters is pretty big. I'm lumpy.

Then it went on to say, "There are also a whole bunch more enlarged lymph nodes in your chest cavity, here and there, and over there, and some more up there. There's probably something wrong. You should get that checked out further. But hey, there aren't any enlarged lymph nodes in your pelvis, and your organs look clear."

March 11: Biopsy

A little over a week after the CT scan, I was scheduled for a biopsy. Jason came along with me, but they wouldn't let him come back to the exam room with me because it was already crowded with me, a nurse, an ultrasound technician, the doctor who was doing the biopsy and a pathologist.

The nurse was there for me, and to give me the instructions I needed after the procure (don't soak in a hot tub, don't take ibuprofen). The ultrasound tech took ultrasound of that super lymph node so the doc would know where to stick the needle.

The doctor was there to stick a giant, hollow needle into my neck. That was interesting. He was taking tissue cores, so he stuck this 8-inch (or so) hollow needle into that super node and then pushed something which took a core sample of the tissue. It reminded me of taking tree cores in botany, only faster. The pathologist was there to make sure the samples would work for analysis so I wouldn't have to come back later.

March 17: Diagnosis of Hodgkins lymphoma

I had been told that pathology would likely have results by Wednesday noon, so when I hadn't heard anything by Thursday afternoon, I called my doctor. The nurse called me back with a diagnosis of Hodgkins lymphoma.

"Lymphoma," I said. "So that's cancer. That's bad." I was a little too shell shocked to ask any more detailed questions, but my doctor had recommended an oncologist with whom I should follow up.

March 21: Specific diagnosis of multiple cellularity subtype of classic Hodgkins lymphoma

Of course, when I received a diagnosis of Hodgkin lymphoma, I began to read about it. Since I didn't know what specific subtype I was dealing with, I called on Monday morning to get this information.

March 24: First appointment with an oncologist

I had an appointment with the oncologist to whom my primary care physician had referred me. I have a second opinion schedule with another oncologist later this week, but I learned I will most likely be receiving ABVD chemotherapy treatments once every two weeks for the next 4-6 months.

I don't yet know what stage the cancer is. This week, I have a PET scan, a pulmonary function test and an echocardiogram. The first will help in staging the cancer. The other two are to establish baseline function of my lungs and heart because the drugs in the chemotherapy can affect my organs.

There aren't a lot of pros to cancer, but the one in this case is that Hodgkins lymphoma responds well to treatment and the Five year survival rate (how ominous is that?) is around 90%. The other one is that I have people, people who care and who want to help me out. I sometimes have trouble reaching out, but I'm really going to try and ask. My family will need your support as much as I will.

Friday, March 25, 2016

Aurora's 3rd Birthday

My baby girl celebrated her 3rd birthday on the 21st of March. I cannot believe that our sweet, silly Aurora is already three years old! She is certainly the comedian of the family. She loves to play dress and is pretty awesome at putting together puzzles. She loves to dance and if I put on some music, she runs to her room to put on a dress up because that's a requirement for dancing! 

Me and the birthday girl

Great grandma gives the little man some love

Sister snuggles!

Grandma nuzzles Keegan's fuzzy head

Cheesy grins!

There's always some silliness going on around here. 

Chocolate cake, per Aurora's request

Happy family

And we ended the night with birthday gifts. 

Keegan's newborn photos

This post doesn't really require a lot of words. I wanted to get some photos of Keegan as an itty bitty, and these were taken when he was 6 days old. I love the photos of his sisters holding him, but it is so, so hard to get a photo of all FOUR of my children at the same time! 

Wednesday, March 9, 2016

Keegan's SUPER home birth story

It was Super Bowl Sunday, February 7th. I was in my sewing room finishing the free motion quilting on a quilt that I wanted to finish before the game, but also before our baby, due February 13th, arrived. By 5pm, I finished. Check one off my list. Maybe I'll have time to finish one more project before I have a newborn again -- any day now.

Thirty minutes later, I sat down to use the bathroom and A LOT of liquid comes out. My first thought was "Hmm ... it didn't feel like I had to pee that badly." And then I realized that my water broke!

I didn't really know what to expect from here. With Aurora and Kaia, my water broke as the baby was making her way out into the world. With Sierra, my water broke in the early morning hours on a Monday and nothing happened to move labor along until I was started on pitocin 31 hours later. I was really hoping that wouldn't be the case this time around, and I called the Birth and Wellness Center to let my midwife know what had happened. Jessica got back to me, and she just wanted me to keep her updated if things started moving along.

I watched the Super Bowl and timed my contractions. Around 8:30, I called Jessica back. She told me she had moved closer and was going to be staying with a friend who lived about 10 minutes away from me. With my history of quick labors and a cold front coming in and bringing possible snow, she didn't want to be over 30 minutes away. I let her know that my contraction were still between 20 and 40 seconds long, but all over the map as far as timing went: 8 minutes apart, 4 minutes, 6 minutes, 10, 4, 5, etc.

By 10pm, I was relaxing in bed listing to a Hypnobabies track on my headphones and getting excited to meet my baby boy. A little after 11, I had my first contraction that lasted nearly a minute and required some heavy breathing to work through. Jason wondered if we should call Jessica, but I thought we should time a few more to make sure things were really ramping up. They were, and we called her about 10 minutes to midnight (maybe a little sooner). She was going to head over and asked if I would mind if Tru, their student midwife came to my birth. I thought that would be great, but Jessica was going to come over and see how things were going before she called Tru.

Meanwhile, Jason and I were up and getting ready to bring our little man into the world. We had rented a birthing tub and began filling it up in a corner of our bedroom. We changed the sheets on our bed to the "$2 from Goodwill" version and put plastic down on the floor. All the commotion woke Sierra, who came in to see what was going on with lights on in the middle of the night and her parents moving about like squirrels getting ready for winter.

I had to stop occasionally to work through a contraction, and Jessica arrived around midnight on Monday, February 8th. At this point, I have lost track of the time line. I was sitting on our exercise ball next to the bed between contractions and rising up and vocalizing as they came. Jessica called Tru and told her not to waste any time coming over. When the water in the tub was ready, I moved there, and the water felt great. The birth tub is like a large, blow-up kiddie pool, but with much higher sides so the water can be deep and handles on the inside in case you want to grab on. I followed what my body wanted to do and ended up on all fours.

All of my lower body was in the water. And that is how our little boy first entered the world: into the water.

Apparently, the cord was around baby's neck, but Jessica detangled him and instructed me to grab him and pull him up in front of me.

He was a little blue because of the cord, but Jessica was quick to give him a couple puffs of oxygen and I gave him some good strong rubbing and he started to get pink within a matter of seconds. That first little cry came and we knew he was just fine.

Keegan Robert Getz was born at 12:41am on Monday, February 8, 2016. I kind of love that his birthday is 2/2^3/2^4. He weighed 7 pounds 10 ounces and was 20 1/4 inches long.

I was supported by my husband and my midwife and I think it is absolutely awesome that my 7-year-old daughter was awake and got to see the birth of her baby brother.

The student midwife arrived 8 minutes after Keegan was born, but she got to do the newborn exam and our nurse came shortly after her.