Ok. I am back from my blog hiatus. It’s been one hell of a few weeks.
I want to start by acknowledging my neighbor John Gorka, who passed away last Monday after a yearlong battle with multiple myeloma. John was a wonderful neighbor, coworker and friend to Derek and I, and even though we had only known him for about three years (as I had little interaction with him at work), his passing is difficult. Although we knew it was coming, as he had been on hospice for a little over a month, for some reason, I am still in shock. I just keep thinking we’re going to see him next door, dropping off some of his famous home grown tomatoes; smiling as I’m trying to keep Mack from picking his perfectly planted flowers in his front yard; trying to keep Diesel and Dakota from barking at him after all this time. But that being said, I am glad that John was very strong in his faith, and I like to think that he is in a better place. A place where there is free golf all the time, and where they only serve Ferrantes wine. So God bless you, John. You will be missed by many.
I had my PET scan last Tuesday, followed by chemo on Wednesday, where I received the results. Overall, the results were good—there was no cancer at all found in my spine anymore, which is pretty amazing, and all of the tumors everywhere else were much smaller. My spleen and liver were still enlarged, but both the radiologist and my oncologist think that may always be the case due to the large amount of scar tissue present in those organs. But as per usual, (and I will quote my oncologist here, “Come on Mary, you know things are never cut and dry with you!”), we also received some not-so-good news. The PET scan revealed a new spot in my chest—on my bronchial tube to be exact. The impression of the radiologist was that the spot was not cancerous, but rather was inflammatory in nature, but I will have to have a biopsy to be sure. Dr. C (my onc) says it could be sarcoidosis, but whatever. In my mind, so long as its not cancer, then I’m cool with that.
Other bad news was as follows: I asked Dr. C what happens next—as in, how am I lookin post chemo? To which she informed us that there is a 95% chance that I will relapse within the next 2 years. I realize these are just the statistics based on the advanced stage of my disease, and the damage it caused primarily to my spleen, but it was so disheartening to hear. Not to mention, the next step would be a stem cell transplant and more chemo, and a long hospital stay. From what I understand, if I can make it one year or more in remission before a relapse, then my odds are pretty good. However, if I relapse within one year, the survival rates are 30-40%. I’m trying really hard not to think about that part, but its really hard not to. In addition to all of that, Dr. C pretty much confirmed that it is not advised for Derek and I to even try to have another baby, even if there is a small chance we are able to after all of this. The risk of reoccurrence is just too high. So, nail in coffin with the baby issue I guess.
But I still love Dr. C…..who totally tends to sugar coat things for me because she knows how anxiety-ridden and scared of dying I am. I always have to ask her point blank: “Don’t bullshit me, am I going to die?” to which she responded on Weds, “you are totally kicking cancer’s ass”. I love when I get her to swear. She kind of shifts her eyes around like she shouldn’t be doing it, but you can tell it satisfies her. I imagine maybe she attended a Catholic grade school. Truth be told, I would love to get better, and take her and the rest of the team out to get piss faced drunk. Sure would be a sight to see!
I decided that I wanted to get her a little gift for when all of this is over—even if I do have a relapse, and have to see her again sooner than expected. But…what do you give someone who saved your life? I mean seriously? After thinking long and hard, and searching numerous websites for ideas, I finally decided on a hot pink button for her lab coat that says “never let an oncologist do your hair”. Good advice, I’d say.
So anyway, I have put off posting on my blog because to be honest, I just haven’t been in the greatest place mentally. Normally I’m super upbeat and positive, but—and perhaps it has something to do with yet someone else I know dying from cancer, and the news that this isn’t going to be over any time soon from how it looks—I’ve been in a bit of a funk. Depressed/scared/angry/anxious…I’m not sure what it is, really. But I do know, that I’m really trying to get out of it, and I didn’t want two blog posts in a row to be total downers!! It doesn’t help that my night sweats are back—every night, and I’m so tired all the time, that I get worn out just walking to our mailbox, yet I can’t sleep. Those are symptoms that I had in the very beginning so it is scary to still have them at this stage of the game. I know it would be much easier to have a more positive outlook about everything if I didn’t STILL feel sick and weak. That part makes it really hard to forget about the fact that I have cancer, and move on with my life. I’m hoping that its simply because my white counts are still at 0, but who knows.
I am constantly trying to be “normal”; cleaning the whole house, making dinner every night. Its amazing how hard these tasks are for me now, but I almost feel like if I can’t do it, then I’m a failure—like I let the cancer beat me. I know that I can’t keep this up, and this is in large part why I feel so tired all the time, but it’s amazing how much self-satisfaction I get from being able to mop the floors. Silly as it sounds, its something normal.
This weekend, I actually got out of the house to attend a wedding for Derek’s good friend, Dustin. It should be noted that this was against the wishes of Dr. C I’m sure, and I tried hard to avoid elevators, bathroom doors, and large crowds. My hands are actually crackly due to the amount of purell I used the other night. I didn’t make it too long, as I am easily out of breath, weak, and not used to wearing heals—all of which made me even more tired than I already was. But while I was there, I was happy for my husband. For him to have a night where he didn’t have to think about cancer, or taking care of me, or our mounting bills, or taking care of the house, etc. etc….well that meant the world to me. Derek has an amazing group of childhood friends, some of whom I met for the first time this past weekend, but who commented on my blog, and how they have been praying for me—for us—its all so nice. After that, and after a visit from another one of Derek’s good friends from California, I realized how lucky we both are. Maybe we don’t have friends that come over to party with us every weekend (you know when I’m not sick), or friends that we “go out” with on a regular basis, but I’ll tell you this. If any of Derek’s friends or my friends needed anything at all, we would both be there in a heartbeat, as I know many of them would be, and have been for us.
And so, when I woke up this morning, I decided to actively try to stop feeling sorry for myself, stop worrying that I’m going to die, and to just focus on these last few months of treatment. I feel like I need a goal to focus on, at least to get past that first year of remission, so I’m going to make a one year bucket list…you know…just a bucket list for the next year….not one for life, because I’M NOT GOING TO DIE. …well not yet anyways. I’m going to wait until I’m so old that I can’t even spell my own name. Here is goes:
1. To be hot. –Ok I know what you’re thinking, how shallow am I?! But listen, if your abs were ruined from 3 surgeries after your first pregnancy, you would want a tummy tuck too!! And heck, why not, right? At least for my remission period, I can feel good about putting on a bathing suit once again.
2. Take a real honeymoon. –When Derek and I got married, obviously we had Mack, who was only 11 months old at the time. Not only could we not afford to go away, but we really couldn’t go away for too long with a young son. We ended up spending only 2 days down in Hocking Hills. It would be awesome to take a real vacation somewhere—something Derek and I have never done together. You know, one where you have to take a plane ride to get there, or where they serve fun drinks in pretty glasses. Something like that.
3. Family pictures. –We have basically NO pictures from our wedding. Honestly, nice as she may have been, the photographer was terrible. That being said, once I grow my hair back, I would really like to take some really nice updated family photos. But yes, I would def like to wait until I grow my hair back, because TWO bald people in a picture is one bald person too many if you ask me
4. Run in a 5k. May not seem like much to some of you, but considering I can’t even walk to the end of our driveway without feeling like I’m going to keel over and dry heave, this would be a pretty fab feat.
5. Wine trip with my girlfriends. (Self explanatory).
Ok there we go. In addition to that, Derek and I figured, after waiting a few years, we are totally going to have a big ass “wedding re-do”/party to celebrate life/survival et al. This is certainly not the first few years of marriage we were expecting, so I think a re-do is certainly in order!
I think that pretty much covers where I’m at. As usual, please keep my friend Kris and her family in your prayers, along with my friend Marty.
This has been a long and bumpy road, and it totes sucks. But it could totes be worse. I have a beautiful son, our miracle baby, and a wonderful husband, both who love me so much. So Chin up, Buell. Chin up.
Rest in peace, John.
My little guy ready for summer!