Saturday, May 14, 2016

Chemotherapy, Part 3

Day 29. Thursday

Chemotherapy today. It's been a month since my first chemotherapy treatment, and I still have hair. Before I started, I asked my doctor if I would lose my hair and she said, "If you don't lose your hair, you will be 2 in 100. There's a 98% chance." Maybe I'm 2 in 100? I did lose a handful in the shower last week, but I have a 12 week old baby, so it could just be post partum hair loss.

My father-in-law has my littles today, and I arranged my appointment time so that I could drop Kaia off at preschool before I went to the cancer center. I saw my doctor today, so I got my treatment at the big cancer center downtown because she works out of that facility. The parking garage is a huge, multi-level ordeal. How there can be a traffic jam inside a parking garage, I don't know, but there is. I had an appointment for bloodwork, followed by an appointment with my doctor, and then treatment. There's always a wait here. I waited 40 minutes for my blood draw. Then I waited to see the doctor. Amazingly, I got in for my chemo "just" 45 minutes after my appointment.

Since the last time I was here, it took 3 nurses and 4 sticks to get the IV in, this time, my nurse used a handy dandy "AccuVein" to find the vein. Interesting technology that shines a light on your arm and makes the veins really to see.

I used my time sitting there to color a picture of a ballerina. Then I taped her to my pole. She's a pole dancer. Ha ha.

Day 30. Friday

Some nausea today, but not awful. I had Mother's Day tea in the morning at Kaia's preschool and then in the afternoon, I went to Sierra's end of the year school party. It was exhausting.

Day 31. Saturday

I managed to help my husband paint the deck in the morning. By evening, my face felt super hot. I didn't have a fever, but I definitely looked really red and flushed across my nose and cheeks. I had forgotten that the same thing happened last time. No angry red mark along my vein like last time, but vein where the chemo went in turned really hard. And it hurts a little if you press on it.

Day 32. Sunday

I'm forgetting the details of some of these days because I'm writing this a week later. Life goes on. I heard a story on NPR about Highly Superior Autobiographical Memory, the condition where you remember specific details of every day of your life years later. I'm glad I don't have that because when all this is over, I want to forget it. I don't want to remember how I felt nauseous and how very tired I was. Of course, I can come back and read these posts, but I'm confident my memories will just fade to this being a challenging time in my life.

Day 34. Monday

I hate how tired I feel. It's not me, it's just me. I find myself annoyed at the fatigue. But I rally. Maternity leave is over, summer swim practice has started, and I'm coaching again. Not my usual energetic self, but I'm trying to make the best of it.

Day 35. Tuesday

Looks like I was wrong about the hair. I was driving home for the grocery store today and I ran my fingers through my hair. Hmm, that's a higher than average amount of hair on my fingers, I thought. I continued to comb my fingers through my hair, and when we got home, I tipped my head over and brushed my hands through my hair. It was a lot of hair.

A photo posted by Em Komiskey (@moonlightsewing) on

I'm writing this now on Saturday, and to look at me, you would think my hair looks normal, but I'm losing more every day, a little at a time. I feel like it's only a matter of time until the thinning is so bad that I'll have to shave it. Boo hoo.

Sometimes you have a bad day

Sometimes you have a bad day.

Mine was Thursday.

I felt myself unraveling most of the day. I knew I was coming apart at the seams. I was tired, still, a week after my third chemo treatment. The fatigue was just still hanging on. Note to self: make a better effort at getting to bed EARLY. This is not a natural inclination for me. If you're a night owl, you understand.

I had Kaia's preschool graduation to attend in the morning. (adorable, by the way) The kids and I went out for lunch with Grandpa and he even came back to our place so I could catch a nap. It was lovely, but not enough apparently.

I still felt fatigued. I didn't know what to make for dinner and didn't have much motivation to make it happen. (I made tacos happen) Writing this now, there doesn't seem to be anything that should have put me so on edge, but I was. Kaia filled the body wash with water. Sierra had her bath next, she dumped all that watery body wash in the tub and I found her, along with Kaia (back in the tub after she already had put her pajamas on) up to their eyeballs in soapy bubbles. They thought it was hilarious, but they had wasted the body wash and there was water all over the bathroom and I lost it and screamed at them and pounded on the door. Any other day, I probably wouldn't have been so angry at that, but I was at the end of my rope.

I put everyone to bed, put on my running shoes, leashed the dog, and at 8pm, I told Jason, "I'm leaving." As soon as I started running, I started crying. I didn't expect that. It was like the act of running let something loose. So there I am, running and crying, and trying not to be too obvious about it as I pass a couple guys walking in the neighborhood. "What's up with that weirdo? If running causes you to cry, maybe you should stop."

I came home, took a shower, and then there was more crying. Why am I crying so much?! Jason was my shoulder to cry on for Round 2 and I think I freaked him out a little. I was straight up sobbing.

I don't really know why that happened. My assumption is that I've just been holding my emotions in. I don't know why I'm doing that, nor do I know what I can do about it. Actually, I think I do know why. I'm keeping myself together for the most part because life doesn't stop because of cancer. Kids still need to get to school and dance and soccer. Dinner needs to be made. The house can't fall completely into shambles (even though it does a little bit). My beautiful baby boy needs his mama's love and care. It's affecting me physically. I feel actual pain in my upper back and shoulders from the internal tension finding its way into my body.

I'm angry and sad and frustrated and a little scared. I shouldn't have cancer. I'm a healthy, young woman! The medicine that I have to have to get better is poison and there's nothing I can do about that and I don't like the way it makes me feel. My hair started falling out this week, after I thought I had dodged that bullet. I don't like not feeling like myself. I am so grateful for the friends that have helped us out but I don't like needing help (even though I do). My veins hurt where my IVs have gone in. Your veins are supposed to bounce back when you touch them (seriously, push on the veins in your arms. Squishy, right?). Mine are HARD. And I have active little children. They don't mean it, but sometimes they grab onto me and that hurts and I can't show that. And then, outside of cancer, we've been dealing with another pretty major family stress.

It's just a lot. We're going to get through this. I'm going to get through this. But the road is pretty rough right now, and it sucks. And then I realize that there are others who have even rougher roads and even bigger challenges and then I feel shitty that I'm whining about my deal. Here's to making it to a better place.

Thursday, May 5, 2016

Chemotherapy, Part 2

I am currently sitting in a chair in a too quiet room at the Siteman Cancer Center, receiving my third treatment of chemotherapy. So, I guess it's past time when I should post an update about my second treatment.

Day 15. Thursday.

My mom was in town this time, so she took care of my littles while I was gone Thursday.

Each cycle of chemotherapy is two treatments. On the first treatment of each cycle, I see my doctor and then have my treatment at the main location of the cancer center, down in St. Louis city. It involves a longer drive, more traffic and navigating a much larger facility. Since this was the second treatment of this cycle, my treatment took place at a smaller satellite location of the cancer center. It's only about 10 minutes from my house. I don't have to battle traffic. I just park outside and walk on in.

The IV took just one try this time rather than 4 (thank goodness). My nurse was a guy named Greg. When he asked me if he could get me anything, and my response was "A window?", he told me I was supposed to bring my own. Ha ha. I realized as I was sitting there that I spend a good chunk of the day with the pole where the drugs hang. It even goes to the bathroom with me. I commented on social media that because of this, my pole probably needed a name. One friend said the pole needed a dancer, and I had a lot of name suggestions. My favorites were the puns: "Tad", "Bean", and "Peter Pole and Mary." So now I think need a ballerina to attach to my pole (the dancer). Her name will be Mary.

I was home much earlier this time and I felt a bit tired, but I took Kaia to soccer practice that evening.

Day 16. Friday.

I had a quilting weekend planned before my diagnosis, and rather than cancel, I decided to just go and see how things went.

My mom and I left after we dropped Kaia at preschool, and my father in law came over to be "second parent" for my little ones. Keegan came with us to the quilt retreat because I felt like Jason had enough to juggle with the three girls and soccer practice and games over the weekend.

I had some mild nausea like last time, but again, it wasn't bad enough that I felt like I needed to take my anti-nausea meds. We drove 3 hours, did some quilting, and I made fajitas for dinner. I'm usually up pretty late at a quliting event like this, but I gave myself a pass and went to bed earlier than I would have otherwise.

Day 17. Saturday.

More nausea. But just a little bit. Mouth sores again. Annoying, like a canker sore on the inside of your cheek. Later that day, though, an odd symptom. The IV had been put in on the inside of my forearm. An angry red line appeared in the late afternoon at approximately the IV point, and it ran up my arm, making one zig zag until it stopped at the point where my elbow bends. It was tender to touch. I considered calling the emergency hotline for the cancer center, but there were two nurses who were on our quilt retreat, and they both thought that I could wait until the next morning and call if it didn't get better. Another fun symptom (and possibly TMI, but I am hoping if someone reads this and is going through a similar experience, they will at least not be surprised) that appeared this time: constipation. Boo.

Day 18. Sunday.

The red line on my forearm had lightened considerably and continued to so throughout the day. We finished our quilt retreat and headed home. Got there in just enough time to regroup and head out to the soccer field with the kiddos. Life doesn't stop, that's for sure. Sunday night the most frustrating symptom (for me) hit: fatigue. Oh, I just wanted to lie on the couch. I'm usually pretty energetic, so this is so not me. I might blame it on the weekend quilting, but I was careful to go to be early and Keegan was kind enough to let me sleep in until 8 both days.

Day 19. Monday.

Continued fatigue. So, so tired. Good thing I'm kind of hard headed and determined, or I might have just spent the day lying on the couch. I don't have that luxury, though, I have four little kids to care for and things had to get done. I'm thankful my mom was still in town to help out.

The fatigue lingered a little into Tuesday, but not badly. Wednesday, I felt mostly normal. By Thursday, a week after my treatment I felt back to myself again. And now, here I am, starting the process over again.

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.