Tuesday, May 27, 2014

The Thing About Remission

My cancer is back.

I'm just going to come right out and say it.  The cancer is back.  It is back and I'm going to have a major butt kicker of a treatment plan that is starting June 2nd.  I'm disappointed.  So so disappointed.  I'm also hopeful.  That is the short version.  If you're into medical details you can keep reading.  If not, you've got the gist.  I have cancer.  Again.  But OH! OH!! I'm not pregnant this time so there's that.  Since I'm not pregnant I get all kinds of red carpet luxuries like general anesthesia for surgery.

Remission is a history report, not a promise.

The thing many people don't understand about remission is that it doesn't mean you are cured.  You have to have 5 years of remission to be considered cured.   I understood that totally, and even felt a little funny when I would post about remission on the blog or on Facebook.  I knew that remission wasn't a promise, but I also knew many people don't really get that.  I felt like I was leading my friends and family down the primrose path, but I also knew any time cancer free was worth celebrating.  I don't regret any of those posts because those milestones came with real joy and real accomplishments and those were real months where I could be present with my family and serve them and set goals for myself and work towards achieving them.  So, while in some ways posting about remission felt like whipping up false hope, it wasn't false hope.  That was real health and real time spent living this beautiful life I've been blessed with.

Unfortunately, that doesn't change that remission isn't a promise of days ahead.  It's really just a history report of healthy days lived.  When they scan me during remission checks the truth is that they can't guarantee the next three months, they can really only say: "The last 3 months seemed fine, and hopefully the next 3 should be ok too."

So how did this happen?  Cancer is a tough enemy.  It can hide just one cell in your body, waiting to start growing again.  It can be totally eliminated and your DNA can start switching switches and BAM, it's back.  There was nothing in my past diagnosis, staging, or treatment that would have indicated that I would be in the 10-15% of Hodgkin's patients that relapse.  Even pregnant, I was as low risk as low risk could be.  That's why understanding statistics is important.  Numbers are numbers even when they're people.  Even when they're people you love.  Even when they're you.  Someone has to be in that 10-15%.  That someone, this time, is me.

How did you know the cancer was back?

Well, in a weird way cancer helped me catch itself this time.  I learned through my last treatment the importance of being confident in my experiences and intuitions and being assertive about voicing them when I felt something was off.  My natural impulse is to doubt myself and assume that I'm being oversensitive and overdramatic and not tough enough.  I learned during my last treatment to tune into what my body is telling me and to think it through and be ready to communicate to the best of my ability.  I learned to believe in myself and to advocate for myself. 

One day I felt a flare of itching on my ankles and my heart dropped into my stomach.  Please, God, no.  But the thing about itching as a symptom is that plenty of people itch for a gajillion reasons that are not cancer.  It's just something humans do.  But, it was that itch.  It's just different.  It's not on top of my skin, it's down way underneath and has a raw burning quality even though the skin on top looks totally fine.  Instead of telling myself I was crazy I made a mental note, said a prayer, and decided that if it happened again I would take it seriously.  It was such a short little flare, about 2 minutes, and then it was fine.  I also knew I had a CT scan coming up and I figured if it happened again I would tell my doctor at my follow up.  I had 1 or 2 small flares and decided that yes, I would tell the doctor.

At my appointment following the CT scan I was told they saw a small area that was a bit enlarged but within the normal range.  I had a really bad respiratory infection during the scan so that could easily have been the explanation.  That's what lymph nodes do when you get sick.  They get mad and help fight the infection.  I almost didn't say anything about the itching.  The doctor was turned away and noting the respiratory infection in my chart and I managed to stammer out "I....um...I've had a few weird...I know it's probably just paranoia but...you see I just had a few very small flares of itchingandIknowI'mjustbeingparanoid.  Hehe.".   Well, her head just snapped right around and she looked right at me so seriously.  So I started in again: "I mean I know people itch all the time but it just makes me a bit nervous because it's the same quality as before and I just thought I should tell you and I know I'll get scanned again in a few months and I'm sure it was nothing but I thought you should know.".  Then she started writing in my chart.  Crap.  "You were right to tell me.  We'll keep an eye on it and it's likely fine, but if it happens again you need to call.".

Doctors love to say: "It's a straightforward procedure." 

About a month later, I had to call.  I had a few other little flares of itching.  When I say flares that actually makes it sound worse that it was.  They were just whispers of that old itching, but it was still had the same character and quality as the really bad itching before my last diagnosis.  I called the doctor and Michael and I joked that now we would get empirical proof of how crazy I am.  I was scheduled for a PET scan the next week and we were really nervous but tried to pretend like it wasn't happening and joked a lot about how crazy I am.  We went to the follow up after the PET scan and we were nervous but hopeful.  The nurse practitioner came in and sat down and said:  "The PET scan lit up so we're going to need to do a biopsy.  It's a very straightforward procedure."   CUE TO ME LOLOLOLing and interrupting:  "No offense but according to you guys it's almost always a straightforward procedure but YOU'RE NOT THE ONE GETTING CUT OPEN TO FIND OUT IF YOU HAVE CANCER!!!!".  Then she was like: "......yeah...."  I laughed a bit more and then finally let her explain the procedure to me and then my oncologist came in.  And she gave me a long hug.  A long one.  I knew why, because I already knew at that point what the biopsy would show.  I just knew.

She told us that in Hodgkin's patients that have PET scans light up this soon after remission the chance that the cancer has returned is 50%.  She told us it was also possible that it could just be some other infection or my Thymus coming back online after Chemo and being a bit overactive.  It was nice to have those options to cling to, but I already knew.  I also knew I'd have to pretend for everyone that I didn't already know I had cancer again.  I asked what we would do if it was cancer.  The three words that I heard next hit me so hard, like a hit to the face, stomach, and groin all at once.

Bone Marrow Transplant.

Tears.  Gasping for air that seemed inexplicably to evaporate from the room.  Bone Marrow Transplant.  I don't know how I got up the courage to ask the next question:  "If I have to do that, what are my chances?".  Pause.  (Doctor collects herself as if to recall lines from a script): "In Hodgkin's patients the prognosis is 50%."  

Jesus deliver me.  I lost it.

I could hear my dear sweet doctor telling me we had to positive and that we could do this and that we needed to wait for the biopsy.  

But oh Jesus, please PLEASE take this from me. 

I calmed down enough for her to give me an overview of what the treatment plan would entail but I was too upset and too "just thrown into a washing machine on the spin cycle" to understand anything other than "inpatient treatment" ie. a lot of time away from home, and "blood transfusions" ie.  gross.  And then suddenly we were in a numb fast forward in slow motion where we met with a surgeon, scheduled a surgery where bonus(!) I would be under general anesthesia because I'm not pregnant this time.  And then another numb fast forward in slow motion to the day of the surgery where I got put under and then woke up and vaguely remembering Michael telling me they thought is was Hodgkin's as I fell asleep again.  When I finally woke up from the surgery I asked Michael if I dreamt that and he had to tell me that I didn't dream it.  The pathologist who was present at my surgery thought that it was Hodgkin's but there were more tests they had to run.  I already knew.

As I type this I'm recovering from surgery and I have now received confirmation that my cancer is definitely back, and June 2nd I will begin treatment.  If you're still reading you are a really patient nice person because I haven't even told you what they're going to do to me yet.  You can drop out at anytime.  Seriously.

What's the plan?

I'm having an Autologous Bone Marrow Transplant.  That means they will actually use my own stem cells for my transplant so there are no concerns about matching a donor or about Graft Versus Host Disease.  I'm still semi fuzzy on all the details because we haven't met with my transplant team yet.  What I know for sure is that this Friday, May 30th, I'm going in to have a Medi-Port put in.  I didn't have one last time because YUCK but this time, for the amount of pokes and the ornery nature of my veins it's a no brainer but it's still yuck.  The medi-port is a thing they surgically implant under the skin in my chest to make it easier to give me stuff intravenously as well as to draw blood.  The following Monday, June 2nd, I'll be admitted into the hospital for 3 days, during which time I will receive continuous chemotherapy that is much more powerful than the chemo I got last time.  This time I'm receiving chemo called ICE.  I will be really sick most likely WAY sicker than last time, I will lose my hair again, I will need to be monitored constantly even after I come home after the initial three days in the hospital.  I will likely need transfusions of blood and platelets.  I will be at a much greater risk of infection than I was the first time when I "just" got ABVD chemo.  3 weeks later, if my blood has rebounded adequately and I don't have an infection, I'll go back in for 3 days of chemo.  

Hopefully, after doing the ICE chemo twice, there will be room in the Bone Marrow Transplant Unit for me.  If there isn't I'll have to do another cycle of chemo.  If there is a bed for me, I'll be given shots over a course of a few days that will force stem cells out of my bone marrow and into my bloodstream.  The stem cells will be harvested and frozen in preparation for the transplant.  Then I'll get a course of even more powerful chemo and I may or may not get radiation as well.  When my entire immune system is good and dead, my stem cells will be given back to me intravenously.  That part is the actual transplant.  Gross right?

Then we wait.  I will be supported with blood products and antibiotics until, God willing, my bone marrow begins to repopulate and produce healthy blood on its own.  During this part of the process I will be hospitalized in a specialized unit for 3-6 weeks.  Three.  To.  Six.  Away from my husband and babies.  

That's an overview, we're still a bit fuzzy on some of the details and chronology because frankly, we are still in shock.   We are disappointed and we don't want to do this.  But we're going to do it.

To summarize:

Bad Things
  • My cancer is back
  • I'm having a Bone Marrow Transplant
  • I'm going to hospitalized a whole lot
  • I'm going to be really sick
Good Things
  • We caught it really early
  • There is a very small amount of cancer
  • My prognosis is better than that initially quoted 50% because:
  •  I'm young (they transplant patients up to age 75)
  •  I'm healthy (so much that each time I see a new nurse or doctor their jaw drops, I'm working on swimming a mile people!)
  •  I'll be going into transplant in remission which isn't always the case
  • We have the most incredible support system
Please pray for my husband and children, this is going to be so hard on them.  

This is going to really be yucky and really difficult, but I'm going to let Emma Stone tell you why it will be ok:


All I do is WIN.  Drop the mic.

82 comments:

  1. You know we're praying so much. I really appreciate you taking the time to write out all the details like this and answer all the questions. Love you, girl.

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  2. Nella- Like Mary said, thank you for taking the time to write this all out and share a bit of your story with us (me). Our family will be praying for you over here in Michigan, feel VERY free to let me know if there is something specific we can pray for (anything by name- even if it seems insignificant). In the meantime, I will be praying specifically for your children- that they may feel both peaceful and the love of a God who will be taking care of their mom. Love to you!

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    1. Thank you Mary, I will let you know. I promise.

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  3. Nella, I've visited your blog a few times, linking from Mama Knows, Honeychild, when you were first in treatment and again now. I am so sorry to hear that the cancer is back. Your experiences with lymphoma, trying to understand medical statistics, and explaining to loved ones what remission means all hit close to home. I admire your willingness to share your story, your bravery, and your faith through these most difficult challenges. May God give you and yours all the strength and comfort that you need to make it through this next round of battle. I will keep you, your husband, and your children in my daily prayers. -- Julia

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    1. Thank you Julia! Thank you for the generous gift too. I wanted to email you but I couldn't find your email so I'm thanking you here. I appreciate the gift and the prayers so very much.

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  4. Omnipotent and eternal God, the everlasting Salvation of those who believe, hear us on behalf of Thy sick servant Nella for whom we beg the aid of Thy pitying mercy, that, with her bodily health restored, she may give thanks to Thee in Thy church. Through Christ our Lord. Amen.
    We will pray for you Nella! Lots of love always! Izabela and family

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  5. Praying for you and your family.

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  6. I pray that God will grant your family strength, peace, and comfort in these days.

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  7. I am praying for you and your family during this time.

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  8. I am praying for your recovery and for your family. Praying for PEACE and STRENGTH to fight this!

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  9. Oh, Nella. I'm so, so sorry. Please know that I'll be keeping you and your family in prayer. I wish there were something else I could do -- bring you a meal or watch your children, or heck -- donate some blood! But oh, so many miles... Just be assured that folks are praying for you from far away.

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  10. Absolutely storming heaven! For both you and your family.

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  11. Prayed for you this morning my friend. And I will keep praying!

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  12. Praying for you, sweet pea! You inspire me more than you know.

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  13. New reader here, and my family is praying for you and yours!!

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  14. I have been and will continue to pray for you! And for your family.

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  15. I'm praying with all my heart and soul for you to be healthy again, ASAP. Don't be afraid to ask for miracles, Nella. We honor God's greatness b basking great things of Him.

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    1. Thank you for the prayers Micaela and for the reminder.

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  16. Prayers for you and your family Nella!

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  17. I've followed for a long time, and I'm heartsick to read this post and amazed by your humor and candid writing. I'm praying for you all the way from the bottom of my toes.

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  18. Just found your blog, stumbled upon it. I have been having twinges of pelvic pain for months and been neglecting to go in about it because I feel hypochondriac about it. Now I see I better get it checked. I am praying for you and your family.

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    1. Thank you for your prayers and PLEASE get it checked out. Even if it doesn't turn out to be something catastrophic there is no reason to suffer needlessly. I hope you stop by again!

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  19. Praying for you and your family, Nella.

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  20. Oh Nella, as I shed tears her for you, I know that God is right there beside you holding your hand every step of the way, if you happened to read the BLUEFORBEN Blog, the faith there is awesome and you seem to be there as well. Steve and I will be lifting you, Michael and the kids up in prayer and will ask for prayer for you in church, Steve and the boys are coming up there 5/30-6/3, if there is anything they can do while they are there, please tell Michael to let us know, I already told Steve he had to give both of you big hugs from me. We love you all and know that we will do anything we can for you and WILL pray daily. LOVE YOU ALL!!!

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    1. Thank you Trish! Mindy is really amazing isn't she?

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  21. Hi Nella. I just want to let you know that my spirit has been mourning today ever since I was told about your most recent blog post and even more so after reading your blog this evening for the first time. Not wanting to be nosy and all in anyone's business, I suspected something just from our brief encounters at the YMCA swim & gym program but really had no idea what you and your family have been going through. Reading about what you're experiencing and what Ben's mother just went through really does make me love and appreciate my own family even more. I am and will continue to pray. It's nice to read that you have a relationship with God that helps strengthen and carry you through all this.

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  22. I'm sorry your cancer is back. I will keep you in prayer. You have hope, at least it sounds like you do, and that's awesome. I have a friend, he was about 15 years older than you when he went through it, but he went through the exact same treatment for the same cancer. He lived. He still lives and he is about 8 years out since bone marrow transplant. Please take care of yourself. It is not selfish to focus on yourself when your life depends upon it. Let other people take care of your family. It's a win-win, someone else gets to work on corporal works of mercy and your family, and you, get to be taken care of. Let your parish know what you are going through -- our parish feeds families in times of need and you have a need. Be sure to be anointed, as many times as possible. And know that even people who don't know you at all can pray for you, really pray, and offer sacrifices.

    Can I send you a rosary? Maybe a little tenner you can take with you when you are away from home? Or a twine rosary if it needs to be washable?

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    1. Thank you Barbara! I've been anointed once, I'll be going again this Sunday and I imagine the hospital chaplain and I will know each other pretty well by the time this is over. I'll email you about the rosary, you are so generous!

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  23. We too are familiar with the return of cancer. My son, Sam, was 12 when his leukemia relapsed 10 months into treatment. We couldn't get him back into remission, and he died 6 months later. I say this not to be depressing, but I hope you'll ask for his intercession. I and many others have found him to be a powerful intercessor, and I give him every cancer patient I meet. His name is Sam, and you can find out more about him if you type We Support Sam I to a Facebook search engine. I've already asked him to pray for you.

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    1. Oh my goodness, my heart breaks for you at the loss of your son, but no, I don't think that was depressing to share. You are so generous to share his story with us and I'd certainly appreciate his prayers. Thank you so much.

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  24. I just found your blog via Catholic All Year, and I am praying for you.

    I will also ask the intercession of my grandmother -- in the early 60s, she was diagnosed with Hodgkin's Disease while pregnant with my mother, her 5th child. She went on to have four more children and lived to meet 13 of her grandchildren.

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    1. Thank you Brigid! In the early 60s?!?!?!? Wow. That is so inspiring. Thank you.

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  25. Praying for you. Asking my late husband and grandma to pray for you, too.

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  26. Oh Nella!!!! Stupid cancer! I'm so impressed at your ability to see the good in all this, and you are going to have TONS of people praying for you and your family as you go through treatment, I'm proud to be one of them. Team Nella!!!!!!!!!!!

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  27. Praying hard for you and your family. Many, many hugs.

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  28. This is the first time I am reading your blog...but I will be adding you to my prayer list this very second!!!!

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  29. This is my first time here too! As I was reading your prognosis and treatment, I just totally understand what you are talking about. My brother had Hodgkins, was treated (it sucked), recovered, made it the 5 years, was told he was "clear" until shortly after he realized his arm felt weird. When back in, and yes, Hodgkins again. So I know what you are saying about all those statistics, I have watched him go through the treatment (he still has his port in), but the hope is that at 3 years after his transplant--he feels good. I'm sure those statistics are hanging over his head. But for now, he is really really good! I will say that we lit a candle for him at a Shrine for St. Peregrine and later that day he got his first "all clear" (again). God is good! God hears our prayers! We will add you to our prayer list as well. Bless you!

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    1. I'm so glad your brother is doing well! It's always encouraging hearing about survivors. Thank you for your prayers.

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  30. Nella I love you so much and I hate that you have to go through this again. I ask myself why does this have to happen to an amazing mother, daughter, sister and cousin. I have always looked up to you since we were kids because you could always make me laugh but most importantly I knew you had a pure caring heart. I am so so sorry that such a beautiful, kind, selfless person has to go through this. You are in my thoughts and prayers EVERY DAY. I also wanted to tell you that when I spoke to Anthony last week and told him the news in particular about the bone marrow transplant he immediately said "I'll give her mine what do I have to do?" But then I explained to him your pprocedure. He will be home soon in July but he wanted me to tell you he loves you and is praying for you everyday. On June 2nd and all the days you will be away from your family just know we will all be praying for you. All my love, Roseanne.

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    1. Love you too Rose! Thank you for the prayers! You tell Anthony he can help me by staying safe. xoxo

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  32. I read your blog for the first time today. As soon as I read this post, I prayed for you and your family, and like so many others here, you and yours will be in my prayers daily. I wish I could do more, but I live on a sailboat in Mexico, so it's prayer honey, and that's all, but you will be getting tons of it from way south of the border.

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    1. Thank you for your prayers and wow! sailboat? mexico? Sounds like a real adventure!

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  33. Nella, I am so, so, sorry. We've been praying for you every night and will continue to do so!

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  34. Praying for you Nella. Sending you and your family strength and love!

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  35. So sorry to hear this, and praying for you and your family. Also, as you didn't mention it, I hope you have called your priest and received the Sacrament of the Sick as you begin this ordeal. I pray Our Lord will heal you, either through a miracle, or through medical science.
    God be with you. ~ Bonnie

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  36. Hi Nella, I'm a new reader - found your blog via Kendra. I am and will be praying for you, your husband & your family.

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  37. So I just stumbled across your blog. Your faith amazes me and so does your story. Prayers! And way to go on working on that mile long swim!!

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  38. Nella, you and your family are in my prayers and thoughts. I check your blog every so often and was surprised but the latest news. My cousin, John, had a similar transplant for leukemia. He had positive results and is currently teaching English at a local middle school and acting in plays around town. Knowing that you have such a strong spirit is in your favor. Thank you for sharing this journey with all of us. It is an inspirational journey filled with courage. My hope for you is that your medical team, your family and your friends may be a source of strength for you.

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  39. Hi Nella, I came your way via Catholic All Year and I just want you to know that we're praying for you too.

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  41. Nella,
    Thinking of you always and praying for you and your family. Keep us posted and know that I am here for anything you need. Dont hesitate.
    Miss you
    Kairi

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