Just an update!

Hey guys, I realize it’s been a while since I just updated on my health in general and the things that are going on in that realm, so that’s what today’s post is. Sometimes I just get way too into waxing poetic and forget to actually give updates. Sorry!

So basically there isn’t anything too terribly new if you know me. I have no idea what my last blog health update said, so if you don’t know me, maybe this is new info! I saw my oncologist last Tuesday and he is quite concerned about the pain in my lower back/spine. We know there is cancer in my hip bone, so we need to rule out that it’s the cancer spreading before we can treat the pain. So I will go this Friday for a spine MRI (because of the pain) and full body PET scan (routine).

There are a couple of options here. I am still going every 3 weeks for the infusion of the mk-3475, or PD-1 (anti PD-1?…I don’t know…) but anyway it’s my chemo drug. This drug is still not approved by the FDA so I’m in a clinical trial for it, technically. It’s so new that they actually don’t know anything about it, seemingly. So every time I go in, my doctor asks 100 questions and types all the answers into his computer. If I ask, “is that normal?”, I’m typically met with a “we don’t really know.” And that’s fair. The drug is really new! But still a little unnerving, if you ask me.

One side effect they are sure is a possibility is arthritis-like pain in your joints. Of course, my pain would be right where we know there is cancer close by! Lol, oh life! So I’ve been in near-constant back pain for a few weeks now (although the last two days have been admittedly better!) so I’ll get these tests to confirm what’s going on. If it’s arthritis from the chemo (that’s the better option of the two), he would consider skipping my next dose of chemo and getting steroids for a few weeks, before starting up infusions again about 6 weeks later. If it is cancer in the bone, I’m not sure if they would do radiation to the area (I think that’s a possibility…) but it would probably at that point just be a matter of getting stronger pain meds and trying to stay comfortable and functional for as long as possible. Right now I’m taking 1800-2000mg of ibuprofen a day and 3000mg of tylenol a day. It helps to some degree, but not quite enough to feel comfortable. I’ve also, with my doctor’s approval, been taking a percocet at night to help me sleep. It’s not pain that keeps me from sleeping, it’s anxiety unfortunately. I’ll probably suck it up here soon and start taking them during the day too at my doctor’s recommendation, but we shall see.

So, basically, I’m in a lot of pain most of the time, and I sometimes have pain/pressure in my chest due to the lymph nodes that have cancer in them, but that’s expected I suppose.

Oh, I almost forgot, here’s a fun convo between me and my oncologist:

Me: I’m concerned about my weight gain. Could it be the drug? Could it be something else?
Him: I’m not at all concerned about weight gain. I’m actually quite proud of my chubby patients!
Me:

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Lol! He’s super nice and knew I was only teasing when I acted offended and he then backpedaled adequately, but still…

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18 thoughts on “Just an update!

  1. “Waxing poetic” is that what you bloggers call it ? lol…So sorry to hear about your pain, we all have no idea how much you endure !! Hang in there Overcomer.
    And stick some spare tires in the trunk before you leave Friday πŸ˜‰

  2. Kim, I don’t know you (of course) but I like you. Lady you not only have balls, you have big, giant gorilla balls. To be going through this life sick as shit and sharing with us through your blog. I would like to thank you for that. I suspect you have a fantabulous support system. I am a surgical technician at a world renowned hospital. I see children with cancer and the bad and good affects of chemo on a regular basis. People say to me “it’s so sad when kids have cancer” my response to them “no it is sad when anyone has cancer.” The way I see it is, as an adult you are someone’s daughter, sister, wife, mother etc. Your family must be very proud of you handling this the way you are. Keep up the good work Kim.

  3. I have just finished reading all of your blogs, listening to several of the songs you suggested and cried like a baby. You have a most couragous outlook. I know where your hope comes from, because He is my hope too. I just recently started this thing called “blog”, and haven’t really been too sure what to include and what to leave out. You have spoken so many words of encouragement to people I’m sure you don’t really grasp how much they mean. The pains and aches and nausea and all the blah blah blah that goes with cancer is hard for folks that don’t get the privilege to experience it for themselves (and I would never wish it on anyone) to understand. You are funny and strong. My youngest daughter is about the same age as you. You have a beautiful family and it is obvious it is a loving family. I look forward to reading MANY more blogs from you. My wife and I will have you in our prayers. Hill songs has been one of our favorite praise groups. Kim Walker sings a song “How he Loves” I think is the title. Anyway, there is a line that goes “when all of a sudden I am unaware of these afflictions eclipsed by glory and I realize just how beautiful you are and how great your affections are for me”!!! Before I was diagnosed with an in curable cancer, this one line meant so much to me!
    I’m gonna go now. I have been in the hospital since Tuesday to get my transplant and they are sending me home now. I have a C-diff infection so they can’t do the transplant now. It’s a five hour ride home so I’m not real excited. But, as you know, the cancer game is full of ups and downs.

    1. I read your blog as well! Its hard sometimes I think to let people in in this journey, but it’s very comforting to me to read others who feel the same way I do or experience these things that are cancer related. I wouldn’t wish it on anyone though! Take care!

    1. Thank you! So sorry you’re going through this too, but so.glad I’m not the only one that frets about things like that in the throws of stage 4 cancer. I look forward to checking out your blog! πŸ™‚

    1. I know, I should be grateful to be gaining! I always say, “I may have cancer, but I’m still a woman” lol. You’re right though, and I wish you the best in your endeavor to stay at a healthy weight and not lose!

  4. My husband just had his first infusion with MK 3475 on Monday. He is also in a clinical trial. Phase 1.
    Following the infusion, he began having severe pain in his back. It seems to be along the lower spine area. Last night was the first night that he was more comfortable, but today it is bad again. I feel like taking him to the ER but he doesn’t want to go.
    My prayers are with you as you continue this journey!

  5. Hi Kim! You are such a warrior! I just prayed for you. I know you dont know me, but reading your blog touched my heart in ways I couldn’t explain. Cancer is not a big deal to me (before) maybe because I dont have it. But now, having a glimpse of what life people have to go through fighting cancer, I am totally speechless. Thank you for being strong! You inspire me so much!

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