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