In which it gets interesting…

I am sitting in the chair for Round 10 of chemo, and it is Luke’s third birthday. The Benadryl is kicking in, but when we go home I will stay awake long enough to have cake and lunch before opening presents with him. Then I will crash to sleep it off.

I was in a rough place last Wednesday, a day on which just the thought of coming here today made me cry. Actually, most thoughts made me cry that morning. By the end of the day, amazingly, I was feeling much better, but that morning? I just wanted to come home from my counseling appointment and hide. A lot of the problem was that the last round of chemo made me, not more tired, but tired longer, than previous rounds. And the baby had a colicky-type evening, and the big boys were crazy with being stuck inside due to weather. And then there was the cancer stuff.

At my pre-treatment appointment two weeks ago my oncologist wanted to talk about the next steps in my treatment. We talked about moving forward with radiation and about me going to see a specialist for a consultation. And apparently the Bendaryl really is kicking in, because I just remembered I wrote about this in my last post! The part that is relevant to this post, though, is that all of that information, and the implications, and the emotional toll, all hit over the course of the recovery weekend (Saturday-Tuesday). Also, my hair is going. It’s been thinning since October, but since adding bleomycin to the mix post-pregnancy the rate of thinning has picked up. I always have hair on my shoulders and pillows and sofa cushion, all over the sink and bathroom floor when I brush my hair, stuck to my hand like the Sasquatch when I rinse it in the shower…it’s really getting annoying. It’s visibly thinner, though it still does cover my head, and while I hoped to make it through treatment without losing it completely, all of it falling out like this is annoying me enough to make me want to shave it. I’ve been holding out for Luke’s birthday, and probably my trip to the big city to see the big doctor next week…but after that all bets are off. No specific date in mind, but I might just shave it on a random day when there are 376 hairs too many on the floor of the bathroom. Fair warning. I’ll post a pic.

I’m pretty clear on being annoyed about the process of hair loss, and mad about needing radiation, but on top of that, I was (am) really struggling emotionally with both of them together combined with the fatigue I’ve been feeling. I don’t want to lose all of my hair (and, incidentally, I still have to shave my legs?!?! Whatever!), I don’t want to need more treatment, and while I was exhausted the thought of more exhaustion to come just made me…cry and want to hide. Quite honestly.

And now. Yesterday at the pre-treatment appointment my oncologist went over some of what to expect at the specialist consult next week. At this point in the game it almost feels like an assault. Yes, an assault of the things that they want to do to make sure I am CURED at the end of this, but still.

Maybe radiation. Or not.

Maybe the sixth cycle of chemo before moving on. Or not.

Maybe an experimental drug that has had good results in more severe cases of Hodgkin’s. Or not.

Maybe a biopsy of the mediastinal mass hear my heart. Or not. But, from what he said the specialist was saying, likely.

Maybe autologous stem cell transplant. Or not.

Definitely at least one more PET scan in the course of whatever happens next, which will likely be a combination of more than one of the options listed above and possibly others that haven’t come up yet.

The stem cell transplant is the one that scares me the most. Ugh. I just really do not want to do that! As my oncologist said yesterday, though, we are dealing with a form of cancer that can be cured, and while the cure has significant risks, possible risk trumps certain cancer. True enough.

So. We go to the city next Tuesday carrying printouts of medical summaries and scan reports and CDs of radiology scans…and we come home with way more information than we ever wanted and, hopefully, a plan. And, possible, more appointments for the family calendar.

In the meantime, and in the aftermath, I am working on getting more rest. I am asking for more help. I am doing my best to stay in the present moment. I am snuggling my boys. I am taking my vitamins. I am going to my counseling appointments and keeping tabs on my emotional state. I am praying that all of this is done soon and especially that it is done in time for our summer travels to visit family and friends. I am offering up all of this for friends who are dealing with much more difficult situations. I am offering prayers of thanksgiving for the many people who have helped us through all of this. I am trying to read a book or two. I am baking bread again. I am trying to stay calm with the kids. I am still processing the reality that just doing chemo now seems like the easy way out, and it’s not the way I am going to be taking.

Before I finish, a final request for my prayer warriors: in addition to me and my husband and our families who are taking this ride with us, please add my aunt who is dealing with breast cancer; my brother’s godfather who has melanoma; a friend whose baby will not survive once she is born next month. Thank you all.

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12 Responses to In which it gets interesting…

  1. Margie says:

    You are one strong lady, Emily. Many prayers going out for you for continued strength, patience and sense of humor! Prayers for your extended family, too.

  2. Mrs. Woods says:

    Em, I love your raw post. you are so Beautiful to me. thank you for your updates, for letting me pray with you through this.

    • Thanks, Stacy. Overall I think I’m doing well, but not always. And this blog is the place to tell my story–no point making it seem like a euphoric experience! The birth was (oops, still need to post birth story!) but the rest is decidedly mixed. Thank you for praying!

      P.S. Anxiously awaiting your news!

  3. Aunt Barbara & Uncle Dave says:

    I love you, I love you forever. We are all holding you in God’s hands. I still love your sense of humor it is so in the gene pool. Rest, Rest my love and surround yourself in his grace and light.

  4. Kathleen says:

    Did you mean to imply in your title that it wasn’t interesting before? You are amazing, as always. I wanted to hide just from reading this. Of COURSE you want to hide. Thanks for your honesty and putting it all out there for us. I hope you know your strength and witness of faith is a gift to all of us. Catch a hug, my friend.

    • Maybe I should have added “AGAIN!” to that, huh? Despite the difficulties we have been pretty much routine since Stephen was born, so “interesting” means we are headed back into upheaval territory. Thank you for your words…and the hug…and all the rest. 🙂

  5. Celine says:

    Happy 3rd birthday to Luke! You are one strong Momma, and it’s ok to not only feel like hiding, but actually going INTO hiding–well, for a bit, anyway.

  6. Working on that, actually. 🙂 Thanks, Sleen.

  7. I was going to echo the others about how strong you are. Yes, you truly are. But the words of my therapist echo in my head, it is okay to be weak and helpless! I can’t imagine all that you are going through. God bless you!

    • Yes…working on accepting the helplessness lately. I think my strength has to be in enduring right now, but I have to ask for help in the doing…kids, house, many things that I COULD do, but in the long run the lack of rest makes everything (physically and emotionally) that much harder. It gets overwhelming.

      Praying for your family!

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