Chapter 1: I don’t plan on dying.

We’ll lay on our bed and I’ll run my fingers over his prickly beard and explain that I need him to live at least one day longer than I do. You see, I can’t imagine wanting to be alive with out this sweet man. He nods and points out that women typically live longer than men, but he promises to do his best. In our hypothetical world where we choose our deaths he’s willing to live a little without me to make me happy – though he points out that he would be rather unhappy with out me. I’m mad about this man. I want to spend the rest of my life with him. He gives me reason to live, he gives me reason to fight.

 

The day after Christmas, 12/26/2013, I set my phone down in the kitchen. My cheeks felt pallid, I could feel my heart… faster… or maybe slower… I don’t know… I shouldn’t feel like this. Ginny sat in her green chair with an episode of Micky Mouse playing in the background as Brandan sat at his desk. I laid down on the bed and asked him to come snuggle. My fingers on his scratchy beard, I repeated what the doctor had just told me: “I don’t have kidney stones. I have several masses in my lymph nodes. The largest is the size of a tangerine. 7 cm.” I held up my fingers to help my metrically challenged husband. “It’s called lymphoma.”. 

Technical stuff:

Lymphoma is a type of blood cancer. I think people assume blood cancer = leukemia, I may have been guilty of that, but thanks to hours upon hours of Googling I’ve learned a lot more about blood cancers than I feel any person should ever have to learn. The lymph nodes are kind of like the car-wash of the blood system. At every second of the day 80% of your blood is in your cardiovascular system (veins, arteries, etc.), while the other 20% is working it’s way through the car wash (your lymphatic system). It’s slightly more complicated than that – in that the lymphatic system is a filter and so only plasma is actually circulating through your lymph nodes, but the gist of it is: my body is confused.

Lymphoma is a cancer of the white blood cells.

We are still waiting on results. In the last week I’ve had 4 blood draws, 2 CT scans, and a tumor biopsy. Now I have a PET scan and bone marrow biopsy scheduled, and I am having  port “installed” because my veins suck and every time I have something that requires a needle it takes four needles, lots of pain, and 30 more minutes than it SHOULD take. So… there’s that.

Other technical stuff:

My cancer is currently “Stage 2″. You can read more about Lymphoma staging here. But basically, Stage 2 means that more than one set of my lymph nodes in infected, but because both of the infected sets are on the same side of the diaphragm it is still “okay”. I have a bone marrow biopsy scheduled for this week. If the results show cancer cells in my bone marrow then it will jump to Stage 4. If you rest your hands just below your rib cage on your tummy you will feel exactly where my tumors are. Under the palm of your left hand I have a 7 cm tumor, and then several smaller ones scattered across that area.

Understanding the “prognosis” can be confusing. It’s very subjective, but the general statement from my doctor was that people my age, in my health, with my blood results, with my type of cancer have a 70% survival rate of 5 years. This is supposedly good. It pisses me off because I shouldn’t have to think about this. But 70% is a lot better than say… 40%. So I’m trying to stay positive. I have zero of the “risk” factors that indicate poor prognosis, and unless my tumors reject the treatment it should be… relatively… smooth sailing.

 

My symptoms were exhaustion and back pain. Let me rephrase that. My symptoms were the symptoms of being the mom of a two year old.

 

 

Personal stuff:

I’m scared. The last few weeks have been full of shitty experiences. I’ve had three CT scans, a biopsy of one of the tumors, and thanks to my uncooperative veins each IV and blood draw has taken at least 3 needles in less than optimal locations (for some reason my inner elbow thinks it’s too good to be poked with a needle. Go figure.). I’ve been forced to think about things like how is Brandan going to handle this? How am I going to take care of my daughter and myself? If I don’t die will I ever have more children? Will I die?

I’m bitter. I’m 25. I have an awesome life and I hate that I’m dealing with this. Not that I think any one every “deserves” cancer, but I feel like… well… I really don’t! lol. This feeling comes and goes, but when it comes it’s difficult to shake.

I’m hopeful. We immediately reached out to our friends and family. We are incredibly blessed to have people who love us so much. Preliminary results showed that the cancer seemed to be well contained in my abdomen, my other organs look healthy.  

I’m tired. Because let’s be honest – I’m the mother of a two year old who doesn’t nap, and being exhausted is not a new feeling. Unfortunately this disease has left me even more tired than usual, and the medicine to take care of the pain also makes me tired…. so I’m just tired.

I’m thankful. Before this point I’ve told just family and a few friends that I needed to lean on. Already I’ve felt the out pouring of love and support. It gets me through those bitter moments.

I feel like the luckiest unlucky person in the world.

 

So that’s my life right now. Emotional, over whelming, busy, crazy, exhausting, slightly painful, generally uncomfortable, and tired. Yes… my exhaustion deserves to be mentioned twice. lol.

 

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21 Comments to “Chapter 1: I don’t plan on dying.”

  1. Love you Jessica! Ready to kick some Lymphoma butt!

  2. Hang in there! You can get through this!

  3. Jessica, I am so sorry to hear this news. I know you’re not one to desire sympathy, so please don’t think I think you’re wanting any, Its simply that cancer makes me so mad. I have no idea what you’re going through. I do know however that prayer is powerful and you can count on me for that. Please let me know anything you want specific prayer for. I also had the thought that Anne Temme had lymphoma and she might have some words of encouragement for you. Not sure if you’re looking for people to talk to but I just thought I would throw it out there. Praying for all of you! Love, Laura

  4. Hi there. Thank you for openly sharing your story. I’m going to contact you in person too! I’m happy to help out with Ginny, anytime – please put my cell in your speed-dial. After you get your chemo schedule, we can even set up regular times that I just take care of her. Brady is great with little kids too!
    You are not going to go through this alone.
    You are much loved!

  5. Love you. Always have, always will. Got you covered in prayer and in hugs.

  6. I’m sorry that you have to go through this. I hope that you are healthy again soon!

  7. Wow, Jessica, your words brought tears to my eyes and are so very close to home. In August of 2012, we found out that we were expecting our 2nd child. in December of that same year, my husband was diagnosed with stage 4 metastatic melanoma. He left for Houston today where he’ll have a PET scan to see where things are. Mandy Reed and I have been the best of friends for many, many years. she told me that she shared our story with you. We will pray for strength for you & your sweet family… I so enjoy Twila’s posts about your little Ginny. Words are just words, but there have been many that have helped us in our darkest hours. I pray that God holds you tight & helps you through this trial. He is so mighty & has been working miracles in our life… He’ll surely be there for you. Please do seek out alternate opinions if you have any doubts about your treatment…. there are so many brilliant minds out there. Take care, Heather

  8. Jessica – I pray every day for this to not be true….cancer is not fair. It tries to make you question everything you have always believed in, but God will always have your back and keep you in his loving arms. I guess God wants this to be a learning experience and for us to tell all family members about cancer and that it does exist. I know family history is one of those things we find out after the doctor gives us that message “you have cancer”. I did not realize how much is in our family until I started asking and your Aunt Debbie and I have been compiling the family information. She gave a lot of it to your Mom. Cancer should not be a secret, we didn’t do anything to obtain the disease, however, now we need to let others know it does exist. Please feel free to call me if you have questions about what to expect from some of the tests you will be going through or medicines you will be given, I will let you know any reactions I had to some of them. I spoke to a man yesterday at my chemo appointment who also had lymphoma, and he said you will kick it. We both prayed for you. I believe you will overcome this myself, attitude is so important, and it is ok to rely on others to help you through. I am so thankful for my family. My sister came to stay with me and I don’t have a small child to chase after, but there are times I am just too tired and she helps keep me going. Terry has been a trouper through this as well, but he has to go to work everyday and my sister has helped him as well just being here. I love you!! and I pray for you everyday to be better. Aunt Sue

  9. Jessica, your sharing of your raw feelings and recent experiences is touching, moving and inspirational. Thank you for taking the time to share this with all of us and help educate us on what your going through and what it all means. You obviously have an enormous network of loving friends and family! It’s a testament to what a wonderful person you are. We are here when you need ANYTHING! We are happy to scoop Ginny up anytime for any reason for any length of time. The kids would love having her here! Even if it’s just so you can get a nap or have some one-on-one time with Brandan. Whatever you or Brandan need – say the word!

  10. Goodness gracious, I’m scared for you! I know you will power through this. Cancer sucks. I’ll pray that you get through this quickly and as painlessly as possible. I’ll be thinking about you.

  11. My daughter lives in Montclair I m so touched by your story my prayers are with you and your family God will get you through this

  12. You don’t know me but I’ve been reading your blog for a while and not really sure what brought me to it. And I’ve sat thinking if it was appropriate for me to post. But I want to say I’m sorry. This sucks. Cancer is stupid.

    I don’t want to give you advice but share some tips that helped me and my late husband when he was diagnosed with AML (yep, that 40% survival rate). Our doctor was very clear that yes, numbers and survival rates exist….however, those numbers are not the patient. Each patient’s situation is different. They have come so far with blood cancer treatments and have really been able to tailor the treatment to the patient. This means far better results for the patient.

    One thing that really helped us was to have someone go with my husband to any appointment that was more than a blood draw. It helps to have a second set of ears to remind you later of what was said (it can be so very overwhelming) but also to remind you of health changes or questions you have.

    I’m glad you are getting a port! They are wonderful and will make things so much easier for you. I do recommend being super protective over who accesses it. Most nurses that work with cancer patients should know how to access it. However, if you go to the ER, since they don’t work with them often, there can be challenges. One of my husband’s port (that was doing great!) was infiltrated and infected by ICU nurses that didn’t know what they were doing. I don’t want that to happen to you. It’s okay to ask for a different nurse to stick you if they can’t do it.

    I also want to share two sites that helped us:
    http://www.lls.org/ – they have amazing resources and information that are available for free. There are online forums for each individual cancer and even caregivers. It was so helpful to me to see that this “new normal” was…well, normal. Considering contacting your local chapter as many have support groups and additional programming that may help you as the patient but also your husband as your caregiver.

    http://www.stupidcancer.org/ – being a young adult with cancer is far different than being in your 60′s and this organization represents that.

    I’m thinking of you and sending you kind thoughts and prayers. This sucks and it isn’t fair. But you will do what you have to do survive. It sounds as though you have lots of love and support and HOPE in your life and the people that surround you. That truly makes a world of difference.

  13. Jessica,
    I don’t even remember how I got to your blog but I have been a random reader since before you had Ginny. I’ve never commented before and I don’t have any personal experience or advice to share but I wanted to tell you that I’ve been thinking of you and praying for you and your sweet family since I read this post earlier this week. I can’t even come close to imagining what you must be going through – I find it bewildering and confusing (and I’m just a blog reader) and yet you continue to be so inspiring. I’m so sorry this is happening to you. It sounds strange to say, but thank you for sharing.

  14. Jessica!
    You are so strong and you can do anything. You and your family have always been in the back of my mind. You all were so nice and caring and it doesn’t make sense to me that this is happening. I miss all of you so much and plan on seeing you all again someday. Reading this and getting a taste of what your going through makes me so upset. Your family loves you and there are so many people out there that think of you everyday and what you do here gives them all so much inspiration. Thank you so much for sharing this. It has opened my eyes.

  15. Jessica…..I’m so sorry and pissed for you. You are an amazing woman, I’ve thought so since you were 9 (well, an amazing girl then…..). I wish I was there to help you, comfort you, scream with you! You are in our prayers and will be on the Laie temple prayer list from now on. Love you girl!

  16. Beautifully Written. I’m grateful you have begun writing about your journey.. that we can take the journeywith you even far away and share our love with you.
    ((hugs from across the distance)).

  17. Now that you know what is happening, it is time to live. You have your man and your baby. Sometimes in life you have to fight. By your Faith will you be healed. DOn’t be afraid, be head strong and determined. It’s your temple, information is the key to healing. Hold your head high and hold your family and friends close and they will help you walk through the hell of things. You are gonna be alright! Believe it! oxox=tt

  18. the will to live is one of the most important aspects to the fight. from your bio, if you are in Northern Virginia, i highly recommend Arthur Kales (he’s an oncologist with Virginia Cancer Specialists in Fairfax, specializing in Hematology). i cannot say enough good things about him professionally or personally.

    i will keep you and your family in my thoughts.

    • Thanks for the suggestions. I’m actually seeing a different doctor in that same practice whose focus is in lymphoma specifically – and she does a lot of young cases like mine. She seems very confident and competent, but compassionate and very gracious. :)

  19. Jessica, It has been a long time since I have seen you! 7 1/2 years (give or take), I remember you were such a strong young woman then and I am glad to hear that you still are. I want you to know that I am proud of the young woman and mother you are! You will be in my prayers and I want you to know I love you!

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