Just about halfway!

It is Thursday night and I am gearing up for my sixth chemo treatment. And although I'm not looking forward to tomorrow, I'm happy that this treatment marks the halfway point. Wahoo! This past week I have felt exceptionally well and have been able to take care of myself and my kids like normal. This has felt so good and has really lifted my spirits. I told a friend that I now feel like I am "doing this" instead of "dreading it.  Treatment 3 and 4 brought some real feelings of depression and hopelessness, along with an increased empathy for those that suffer from depression on a more regular basis. Hard stuff. I'm grateful for the good week before my treatment that helps lift me out of the funk. I'm still feeling anxious about tomorrow, just thinking about it all makes me feel nauseous (accessing my port, smelling and tasting the saline and heparin, de-accsessing my port, the covaderm bandage on my port site...). These things really aren't that bad, but I think I associate them with the fog that settles once I'm home from treatments. The fog is mixed with fatigue and exhaustion, nausea, metal-taste in the mouth, and body aches. But, I know I can do this! Especially with all the love, support, and care I continue to receive from so many loved ones, friends, and neighbors. My eyes have been opened to the importance of serving others when I can and being more committed to people than my own agenda.

We recently started talking with the kids about doing something to celebrate once all my treatments are done. The other night Tildy asked me if we could go back to the hotel when all my hair grows back. Girl after my own heart, loves a good hotel stay. You got it, Tildy! It also cheers me up when Ruby will randomly ask, "How are you feeling, mom?" Today she made the point that even though chemo days are bad, they are also good because they are getting rid of the cancer. I like that perspective, Ruby. This past week and half Henry has been sick with Henoch-Schonlein Purpura (HSP). He has a horrible rash all over his legs all the way up to his waist. His poor knee, ankle, and elbow joints are all inflamed and swollen. Overall he hardly complains, but by the end of the day he is hobbling around like an old man. He asked me whose sickness was worse, mine or his. He has been so matter-of-fact about being sick, it is pretty endearing.

It can be so easy for me to get stuck in a web of feeling sorry for myself and having to go through this experience. This was not part of my plan for this year. I'm still mourning the loss of a normal summer with my kids. I love taking them to the Lindon Pool every week and realize that this won't happen this year. But, I also realize how blessed I am to be in such good circumstances outside of my Hodgkins Lymphoma. Hugh and I are both employed, we have health insurance, we have loving family and friends around us, along with a supportive and wonderful ward family and neighborhood, and wonderful co-workers. Not to mention so many friends, family, and co-workers who have generously helped alleviate the financial burden of the medical costs and my unexpected 6 month leave from work. And four little ones reminding me how lucky I am to be a mom. Life is messy, but filled with lots of good...so I'm hoping to keep my focus there.

Here's to treatment #6!

Trying to be fancy with my headscarf. Thanks for the idea Kristina and Gwen!

Hugh snapped this at my last treatment (#5) and I told him I look like a full-blown cancer patient

in this pic. "Well, you are are!" was his response.

Here is Henry during his trip to the ER the Sunday after my 5th treatment. Hugh took him to Primary's and the nurse in me was having major FOMO. This is where they diagnosed the HSP.

The rash and swelling on his poor legs. It keeps getting worse, but all part of the HSP course, which is usually self-resolving in 4-8 weeks. 

It has been a busy couple of weeks!

Three treatments down...and a head shaving party.

Last Friday I had my third treatment. Before each treatment I have a bit of anxiety about having to do it again. The week leading up to the treatment I start feeling good and more like myself, which makes it hard to think about feeling crummy again. On the other hand, I am grateful to have a week in-between treatments where I feel good. The week after a treatment I feel tired, nauseous, achy, and restless. When I start feeling better it feel like a fog lifts from around me and I remember what it feels like to be Meg again, with just a bit of residual fatigue.

This past treatment my port was not drawing back blood, which worried me. We were able to still do the meds through the line and draw my blood from a peripheral poke. We are hoping that next week my line will draw blood. This kind of stuff stressed me out, and probably where being a nurse isn't always helpful. I am finding I can be quick to think of worse case scenarios and tend to over worry about details beyond my control. My experience thus far has also increased my appreciation for medical professionals and the good work they do. It has made me more aware of my own role as a bedside RN and the care I put into my work. I have missed being at work these past few months and I look forward to getting back to work once my treatments are finished.

This week, my dear friend Anjuli came with me to my treatment. It was so nice to have her with me, especially because we had two hours to just chat. It has been a long time since we've had that much undivided time together. We usually have little kids around to keep us distracted from good conversation. I continue to be overwhelmed by all the outpouring of love and support my family and I have received. The past few months have been quite difficult as I've processed my diagnosis and now, actually starting the treatments. But the love I have felt from so many people has lifted my spirits and the burden of my cancer has been lightened. I often feel the champion of this experience is the goodness of others and those around me. I've been touched by people reaching out whom I haven't seen or spoken with in years. I hope to be better at reaching out to others in time of need.

This past week also reminded me how lucky I am to be a part of the Van Wagenen family. My brother and sister-in-laws all shaved their heads in support of me. By Monday of this week, I finally got to the point where it was time to shave my head. Each time I showered so much hair was falling out that it had become quite unpleasant. I had been holding out, hoping that maybe my hair wouldn't fall out. But it was time. I talked to my SIL Marissa on Monday and told her I was going to shave my head that night. Marissa and Drew rallied everyone together and we all gathered across the street at Scott and Whitney's house to shave our heads. The head shaven crew: Mike, Kristina, Arthur, Jasmine, Drew, Marissa, Scott, Whitney, and Hugh. Ruby got caught up in the fun and really wanted to shave her head, luckily, I remembered her play coming up and we stopped her before she went through with it. She settled on a cute short haircut to show her support. My brother-in-laws Cory and Will also shaved their heads, along with me niece Zoë.  At first I wasn't sure about making a big deal of shaving our heads and doing it together, but in the end it turned something scary into a lot of fun and a night to remember. I felt so much love around me and very grateful for these wonderful people I get to call family. Doing it all together also made it less scary for my kids and they have quickly warmed up to the idea of me having no hair. Every time I pull Betty out of her crib she rubs my head. It hasn't take me too long to get used to my bald head...I actually appreciate the ease of not having to worry about doing my hair.

First treatment and the aftermath.

warm blankets are the best part of treatment

I used to think I wasn't attached to my hair, making it easier to wear it short.

I was wrong, I'm going to miss my hair. 

Rewind for a minute....

Once I was back from my Virginia trip it was time to meet the oncologist and move forward with       the next getting rid of the Hodgkins in my body. I met with Dr. Chipman from the Utah Cancer Specialist group. Hugh and I both liked him and felt comfortable being under his care. Before starting treatment I needed to have a PET scan to see how much was in my body, an echocardiogram to test the function of my heart, and a lung function test. The chemotherapy regime I need can effect your heart function and cause fibrosis of the lungs, which is why I needed to know my baseline heart and lung function before starting. We also decided to place a portacath in my chest to administer the chemo through instead of using IV's every time. The portacath kind of drives me crazy and weirds me out still, but it is so much better than killing my veins with tons of pokes. 

PET Scan:

The PET scan was an easy procedure. The radiology tech injected me with radioactive glucose and then I had to wait in a room for 90 minutes doing nothing. The glucose travels through the body and the scan will show which parts of the body uptake the most glucose--cancer cells use up more glucose and show up as hot spots on the scan. The tech told me that one kid snuck his cell phone into the room during the 90 min waiting period and when they scanned him, his hands and forearms showed so many hot spots it compromised the results. All the texting caused his hands and forearms to uptake a lot of the glucose--fascinating! My PET scan results showed the lymphoma in my neck and one stray enlarged lymph node in my groin. This indicates I'm a stage III which means 6 months of treatment with a total of 12 treatments, 2 per month. 

Portacath placement:

We decided to have the portacath placed by an interventional radiologist instead of by a general surgeon. This way I wouldn't need general anesthesia with a quicker turn around time. I was sooo nervous for this procedure. My big fear was I wouldn't be asleep enough and would feel them cutting into my skin. Fortunately, the sedation nurse was great and I slept through the whole thing. She did have to use more fentanyl and versed than she thought and after asked Hugh if I was really nervous because it took a lot of meds to get me to sleep. Yes, I was nervous! The procedure went smooth, but the recovery was rough. I was nauseous and throwing-up the entire day following. I'm thinking it was the versed because it was my first time getting that med. But, with the help of my mom and Hugh, I got through that rough day and lived to tell the tale. And I feel braver because of it. I remember, before having Hughie my worst fear was having a c-section. I had seen some in nursing school and the thought of being awake while that happened to you terrified me. That was another time I felt braver after facing a fear. Also interesting that my hardest life experiences have left me with visible scars...tangible reminders that I can do hard things. 

Second Opinion:

Although we like Dr. Chipman, the staging of my lymphoma has not been straight forward so we decided to get a second opinion. Dr. Chipman did take my case to the weekly tumor board and everyone agreed it wasn't straight forward but that the 6 months of  chemotherapy treatment was the best course of action. The second doctor we saw, Dr. Wallentine, agreed with the ABVD course of 12 treatments over 6 months that Dr. Chipman recommended. Dr. Wallentine attends the same tumor board as Dr. Chipman and knew about my case before we went to see him. The concern is about the lone lymph node in my pelvis. It isn't quite big enough to be concerning, it is 8mm and 10mm is when they worry. But, on the other hand, there is not other good explanation as to why it is there. At the end of the day, it is feels like the best plan is to go with the longer chemo treatment to make sure we get all of the potential cancer in my body. 

Back to the present...

My treatment plan is referred to as ABVD (adriamycin, bleomycin, vinblastine, dacarbazine), short for the names of the chemo drugs used. Each treatment takes a couple of hours. My port is accessed with a needle that Hugh describes as a big thumbtack, luckily, I put numbing cream on before hand so it doesn't hurt. Labs are then drawn and the meds started. Before the chemo meds they give me two drugs to help with side effects and the nausea, Aloxi and Decadron. While the meds are going in I just sit in a comfy chair and enjoy the peace and quiet (which is hard to come by with four small children at home). Once the treatment is complete the needle is taken out of my port and I'm on my way. Pretty easy. 

Going into the treatment last week I was a wreck. I was tearful and scared, even tripped over my own feet getting on the scale to be weighed. I wished I could turn back and not face the inevitable. But after chatting with the doctor and then getting settled into the treatment, I felt peace and confidence that I can do this. And the weekend following the treatment I did pretty well. Mostly just felt tired. My worst days came Monday-Wednesday. These days I felt achy, nauseous with no appetite, and tired. My mouth started hurting...it felt like I had canker sores throughout my mouth. By Thursday things started getting better, and this past weekend I felt more like myself with my appetite back. Also, my mouth stopped hurting.  Now I'm gearing up for my next treatment this Friday. 

So overall, things have gone pretty smooth, with the expectation that some days are going to be rough. I continue to be overwhelmed with so much love and support rallying around me. Throughout last week I had family and friends help with my kids, neighbors bring meals, kinds words and visits, and more prayers and fasting on my behalf. All this support has been such a help and keeps me encouraged on my rough days. One night last week I felt pretty heavy from the burden of this cancer and the ensuing treatments. In that moment 6 months felt like such a long time and discouragement set-in. But like most hard things, that moment passed and the sun came up the next day reminding me to take it one day at a time. 

Meet my friend, Hodgkins.
(been living with me for years and hasn't been paying rent, the worst kind of friend)

Last September (2016) I noticed an enlarged lymph node above my right clavicle. It wasn't painful, but it was there. I took note and decided to keep my eye on it and have my midwife check it out at my yearly exam in November. Over the next couple of months I noticed two smaller lymph nodes next to the large one. I kept hoping they were nothing, but deep down I had an unrelenting fear that it was maybe cancer. I told myself to stop being dramatic and not to worry until I had reason to...but looking back now, I realize that my intuition was right and prompted me to get the lymph nodes checked out. I am grateful for that. 

I pointed out the lymph node to my midwife, Diana Lee, and she was immediately concerned. I told her I had been sick with a virus the week before and the lymph nodes were bothering me more because of that. We decided to wait a week to see if they went down and if not, send me to a surgeon for removal and biopsy. A week went by and no changes so I made the appointment with Dr. Gill, a general surgeon in Provo. At this point I was still hopeful that the lymph node was nothing concerning and that we were just being extra cautious. 

My appointment with Dr. Gill was on December 1st and Hugh and I went together. We met Dr. Gill and liked him. He asked questions about my health and any symptoms I had related to the enlarged lymph nodes. Initially, Dr. Gill indicated that they were probably nothing because I didn't have any classic lymphoma symptoms (fatigue, weight lost, night sweats). But as he did a physical exam he became worried about the size of the largest lymph node because it was about 1.5 cm, which is the threshold for normal lymph node enlargement. Dr. Gill advised we first do a CT scan of my neck and chest to see if there was more involvement and then schedule a biopsy of the lymph node. The CT scan was done on December 9th and it only showed the enlarged lymph nodes in my neck and nothing else concerning. We decided to first try a needle aspiration biopsy, but the day before the procedure the radiologist decided he wouldn't be able to get enough tissue to do an accurate biopsy. We would need to do a surgical removal of the entire lymph node. My surgery was scheduled for January 4th, 2 days before Ruby's baptism and 6 days before flying out to Virginia to visit Mal. I was worried about the timing, but Dr. Gill was adamant about getting it done before I left for my trip instead of waiting, and he felt confident that I would be fine for the baptism and for travel. 

I was so nervous for the surgery. Which is kind of pathetic, since I've been a surgical nurse for 9 years! I was most nervous about being put under general anesthesia and any complications from that. Everything went smooth and I was able to enjoy Ruby's baptism and made it out to visit Mal. On Monday, January 9th,  (the day before leaving for Virginia) I was driving home from an early morning work meeting when I decided to listen to a message I missed. I will always remember this moment, sitting in our little old 2001 Corolla and hearing Dr. Gill's voice tell me that the pathology came back and it showed Hodgkins Lymphoma. I felt like the wind was knocked out of me and the tears just started flowing. I immediately called Hugh, then my mom and dad. Panic set-in before my rational mind could and I started thinking about all the worst possible outcomes. I called Dr. Gill's office back, once I had better footing, and talked with his nurse because he was in surgery all day. He regretted having to leave a message, but knew he would be gone all day and that I was leaving the next day for my trip. The nurse re-assured me that Hodgkins is a slow-growing cancer and I should go on my trip and not worry about seeing an oncologist until I got back. Although nervous, I was grateful that I could still go on my trip because I had been looking forward to meeting baby Annie for months.

Looking back at all this, I find many things to be grateful for. I'm grateful for my midwife, Diana Lee, and the care she puts into her practice and patients. She does thorough exams and she followed through with her concern about the lymph node and called me to make sure I got in to see the surgeon. I'm grateful for Dr. Gill who also knew when to be concerned about an enlarged lymph node. I'm grateful my guard was up when I first found the lymph node and had a relentless voice in my head telling me to be concerned. I'm grateful I had a trip planned to visit Mal, Jeff, and Annie. That trip was such a blessing at a difficult time. I was able to get away with two of my kids and meet my new sweet niece and see my sister be a mom. It was a beautiful reminder of the good this world has to offer. I also had such a nice time with Henry and Betty on the trip and feel like the one-on-one time was much needed...for all of us. Hugh at home with the girls and me with Henry and Betty.

And now, as I move forward with my chemotherapy treatment, I am reminded again of the goodness of the people around me. When Hughie was born, I felt so much love and outreach that helped ease the pain and burden of his coming and going, and I am feeling that same love again. People are so good and which serves as a good reminder to me to do more to reach out to others. Sometimes I think my reaching out won't make a difference, but it does! Every thoughtful word and outreach lifts. Thank you to so many who care about me enough to say something and extend their kindness. My burden is lightened and I am filled with hope and confidence as I face the next 6 months of treatment.

post-op picture after the removal of the lymph node for biopsy

Mathilda Rose turns 2!

Tildy is our ball of spunk and we all had fun celebrating her birthday. Leading up to her birthday she learned to say "two augus" when asked her age. Much the same as Henry did when he was turning two. Tildy loves being part of anything her older siblings are doing and especially likes following Hank's lead in getting into mischief. She watches his every move and the two of them are either loving one another or driving each other crazy. It seems only fitting that Tildy wears both Ruby and Henry hand-me-downs (as shown above). 

Everyone wanted in on the birthday action. 

Tildy loves building with legos, which is the only activity she will sit still for. I love watching her build with her little fingers and listen to her breath heavy as she concentrates. She will say, "I building a house, mom." Mathilda also narrates everything she does and her vocabulary gets bigger by the day. 

Leading up to her birthday, when asked what she wanted she responded, "Hello Kitty cake." She was pleased about blowing out her candles. 

We love you, Mathilda! Thanks for adding so much life and spunk to our family. Our family wouldn't be complete without you keeping us on our toes. 

Henry Scott (Hank) turns 4!

Can you tell this cute boy was excited to have a birthday?! About the week leading up to his birthday, he kept asking if it was his birthday. The day before, he came down the stairs and said, "Mom, wake-up, it's my birsday!" He was disappointed when I told him one more day. Needless to say, the next morning was a repeat of, "Mom, wake-up, it's my birsday!"

This year I took him to Zuchers Party Store and let him pick the theme for his birthday party. He chose Batman...which surprised me because he seems to prefer Spiderman. He often says, "I love Spiderman, he's hilarious." This is in reference to a superhero cartoon he enjoys watching with Hugh.  But, back to the party. He chose a way over-priced Batman piñata, which when it came time for the piñata at the party, Hank had no interest in doing it. He was more interested in the toys he got from his cousins and friends. We did get him to take a swing at it, but when the candy spilled out, he collected none. I guess this really isn't that surprising since Hank's number one interest these days is toys. Nearly every other day he asks to go to Target to pick out a toy. Toys and presents were the real motivation for his birthday to get here. The day after his party, he was asking to get new toys! This kid! And as much as I want him not to care about toys, it really is the way to his heart right now...that and cuddling with him and watching a show (again, something I'm trying to curb...the show part not the cuddle part). 

It was fun to celebrate Henry and the perfect addition he is to our family. After we said goodbye to Hughie, I was hoping to have a little girl sent to our family thinking that it would ease some of the heartache of losing a son. But the moment Hank was born and placed in my arms, I knew he was just what our family needed. And Henry has proven that ever since. Henry also has a real interest in his brother Hughie. He will often ask about him and "when he's going to get alive again?" Recently, Henry even told me he said a prayer for Hughie. There are even times when he gets sad and tells me he just misses Hughie. I love this tender side of Henry and especially his real connection with his brother. 

Henry, I love you! I love your hugs and kisses that you give me so freely...even after I get mad at you (which somedays is more than I'd like). Thanks for being forgiving of my temper and helping me learn the patience I am always trying to get you to learn. You often tell me, "Mom, you just have to be patient." Your smile is gold, and gets me every time! And I love how much you love to cuddle with me. When you get tired during the day you ask for your blankets and for me to cuddle with you. 

You have the best imagination and will often blame your imagination when you get in trouble, "My imagination told me to do it!" You have also been known to tell me your ears are too small, that is why you couldn't hear what I asked you to do. You love to antagonize your sisters, especially Tildy. But you are also quick to comment how cute she is. And lately, you two have been playing so well together, which makes me happy to see you take care of her. I hope you two are always close friends and fierce protectors of one another.

You love the song "Hourglass" by Mindy Gledhill because I told you it was your song. I know she wrote it for her little boy...and it coins so well how I feel about you. 

Hourglass

Little boy, when you speak
I can’t help but kiss your cheeks
I love the way you grab my hands
And tell me all about your plans

Rocket high, comets fly
You and I could hitch a ride
And fly away to Neverland
And give our best to Peter Pan

When you reach for the stars
Don’t forget who you are
And please don’t turn around and grow up way too fast
See the sand in my grasp
From the first to the last
Every grain becomes a memory of the past
Oh, life’s an hourglass
Life’s an hourglass

Story’s read, prayer is said
Close your eyes sleepyhead
While angels linger in your dreams
And hold you in their feathered wings
Just like you, I was small
Not that long ago at all
I wish you all the happiness
That God gives freely if you ask

Ruby Elizabeth is 6!

Happy Birthday, Ruby! I love how Ruby appreciates tradition. I overheard her telling a friend about some of our birthday traditions. She told her friend about the balloons and gifts she finds in her room when she wakes-up on her birthday, and how she gets to choose her birthday breakfast. A great reminder that the little things make life good. 

Ruby started kindergarten this year and looks more and more grown-up to me. I have mixed emotions about this. I enjoy watching her blossom into herself and seeing her interpret and understand the world around her. But I can't help but mourn a bit about the childhood she is flying through, and realize that before I know it she will be all grown-up. 

Ruby loves having friends and playing with them. Her ears are fine-tuned to hear when Hazel and Maren from next door are outside playing. She races out the house to see if she can join the fun. Ruby needs a constant companion. "Mom, will you play with me." "Mom, what are we going to do next." "I can't play by myself!" (insert pouty face).   

Ruby is also helpful with Henry and Tildy. Lately I love to hear Ruby upstairs teaching Henry something or instructing him how to play a make-believe game. She always want to be to the one to get Mathilda out of her bed in the morning and gets mad when I tell her she can't wake Tildy up.

I also love being in Primary with Ruby. She radiates when she sings during singing time and like a sponge, soaks up the sharing time lesson. Occasionally, we make eye contact and I wink at her and she winks back...warms my heart every time and I feel so blessed she is mine.

Three cheers for Ruby!