Climbing

As most of you are on my FB group for DH I haven’t been updating here on what’s happening but I thought I should post an update as to where we are right now for those who aren’t on FB or who don’t check there too often.

DH’s chemo worked well enough that his local oncologist decided that it was time to start radiation in hopes of further shrinking the tumor to a size where it would be operable.  We did a mad dash to find a surgeon at a center that does a high volume of similar surgeries of the type that DH will need.  As it turns out, I had a friend who had a connection to a colorectal surgeon who pulled strings and scored us an appointment at Johns Hopkins on the day Hurricane Sandy hit.  We made our 8am appointment with the surgeon, received his recommendations and drove home ahead of the storm.

The surgeon agreed with our local doctors that radiation would be the best plan.  So DH started daily radiation sessions two weeks ago.  He will do this for 5 1/2 weeks.  During this time he will be receiving constant low dose chemotherapy so he has to wear a pump for that 24/7 for the duration.  The only break he has from wearing the pump is when he goes to the oncologist for his weekly blood draw.  In January we will travel back to Hopkins for some scans and to meet with some of the other doctors who will be on the surgical team that his surgeon is assembling.  This team will include a radiation oncologist, a urologist, and a plastic surgeon.  In February we will go back to Hopkins for the next surgery and hopefully they will be able to remove all of his cancer then.

So far, he did very well with chemotherapy and had some really good days toward the end of his biweekly treatments.  The radiation/chemo combination is really rough.  He is still working as he can telecommute but he needs a lot of rest so the bulk of the childcare and running of the house is on me with even fewer breaks than before.  I would say that this is similar to when he first became sick.  It is very stressful and of course my work is piling up with the time of year and Advent and Christmas at church.  Also the kids and I all had strep followed by nasty colds last week so there really has been little rest around here.  On the bright side, we have an end date the week before Christmas for this current phase of treatment and he should start to feel better and have more energy when the radiation/chemo marathon ends.

 

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36 thoughts on “Climbing

  1. I just noticed your diary here…hope it hasn’t been sitting lonely for long! You are doing this climb so very admirably. Your fb presence about it is so positive and energetic, and I can see how important that would be for your kids. I hope your DH is appreciative and not too cranky about it all, at least not cranky toward you. Anyone would expect that you’d both be cranky sometimes! You will totally get through this and life will eventually feel like it’s back to normal. You are all in my prayers regularly.

  2. K, I want to send you all the biggest hugs in the world! You have been so positive and upbeat throughout and I hope you have people that you can rely on to carry the load for you.

    • Thanks! I actually am pretty cranky in person though. A lot of that has been just being tired. It’s hard to be that way too long with the kids (unless they are whiny, then I am plenty cranky, looking at my middle two there;-)

  3. I am so glad that you are getting clear and consistent guidance from doctors! It sounds like your DH is on his way back to health. Sending all of you hugs!!

  4. No wonder you are exhausted! I hope the treatment goes smoothly from here on out and you can return to normalcy as quickly as possible. It is a tough road! I think of you often. Best wishes.

    • Thanks! It’s amazing what becomes normal. This is more grueling than his biweekly chemos. I didn’t realize that adjusting to that had become our new normal.

  5. Hey C, I think of your DH, and all of you regularly these days. I admire you for your strength and positive spirits. I just wish there was more we could do than just root for you. But that we do, with all our hearts! Sending lots of hugs your way. F

    • I love your bon mots! Somehow I don’t think coming up here and swinging bags of doorknobs at the people at church who are making things even more complicated this month would be practical. That and one of them is a priest so that’s probably frowned upon.

        • So tempting. Here’s the deal. I’m not sure that I should be angry at him or anyone in particular. This is a major bad timing situation. Because of the economy and frankly what the church did to itself with the pedophilia scandals, many churches have been closing, merging etc.

          The church I work at merged with another nearby church and is now one parish in two buildings. It hasn’t affected me too much until recently as there has been some jockeying for keeping our positions among the music ministers.

          Anyway I used to have my children’s choir sing in my church for the 4PM Christmas Eve Mass but now because of the merger we are consolidating the family Mass on Christmas Eve and having it at the gym attached to the other church’s school. Now I will need to do an extensive set up and tear down for each rehearsal rather than my next to nothing setup at our church and dealing with the logistics of this just sucks. There are also territorial issues and dealing with even getting the space for rehearsal. If the kids are not used to the sound system there and the parents can’t hear them or they somehow mess up, I will get pushback. Anyway, nobody is really making this easy for me and it’s a bad month on my end with increased responsibilities at home and little time to be sorting stuff out over there.

          • Man, when it rains it pours. I’m so amazed at how well you’ve held up so far with everything you take on and is foisted upon you. Adding physical and logistical stressors seem so cosmically unfair.

            You and your family are in my thoughts daily. I often reflect on how you are handling this illness, in addition to everything else you do, and am just so impressed. Of course you’re short with people who have endless needs — there’s only so much of you.

            xoxo

          • It is just amazing to me how unhelpful lovely church folk can be at times.

            One of our priests commented one time about a parish closing in Philly – “we know where they’re all going – here!” The Catholic population has exploded here over the past 20 years or so.

  6. An end date is great news. I hope that as crazy as this time of year gets, the one blessing will be that it will fly by as fast as usual, and that end date will be here before you know it. Big hugs!

  7. You (and your DH) are amazing- handling this difficult thing with so much grace and good humor. Here’s hoping that the rest of this climb goes quickly and easily. Adding my hugs and prayers to the mix.

  8. So glad you’ll get a bit of a break over Christmas. For what it’s worth, I was a horrible mother when my younger son was critical–and I was only dealing with two kids, plus I had a fully functioning husband. You do what you can, and then forgive yourself for the rest. Hugs.

    • Yeah, I’ve had my moments. The kids still seem to love me. One of them is the master at letting me know he wishes Dad was doing whatever it is we’re doing when I get frustrated. Funny thing is, DH managed to help him with some homework earlier this week and heard that he wished Mom was helping him. The same child also pulled this same trick with his Nana.

  9. Hey C – if you ever want a getaway to NYC, with or without kids – I would love to help. I know that time is tight, but I have a spare bedroom with a separate bath – we could do an adult day in the city or you could bring a kid or two. I know it’s a long shot, but it’s a serious offer.

  10. GLad o hear that all the docs are in ageement w/ treatment and that DH is tolerating it pretty well. Be easy on yourself, you and your DH are still great parents.

  11. I got nothin’ other than that we’re keeping you & the family in our thoughts, dear friend.
    $%%$@ priest. Can you (not you personally) enlislt a bunch of teens to help with setup/teardown? Confirmation Class maybe? Are there any musicians not working as church musicians who can help with sound setup? It could help, or it could be more trouble than it’s worth.

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