Just an update on Tom and the end of his treatment

ArchTB
ArchTB Member Posts: 150
in Esophageal Cancer #1
Hi everyone,

I still read the board fanatically but do not have any energy to reply to any posts. Trust me, you are all in my thoughts and I am very happy to read about any and all positive developments.

So, we have passed another mile stone recently: Tom has completed his treatment with the last radiation past Wednesday. I have to say he has been handling the entire ordeal very stoically, not complaining (which sort of sucks, because I NEED to know what to ask doctors or investigate online). The last week and the days after the radiation have been harsh - he has been sick a lot with nausea and vomiting, lack of appetite and difficulty swallowing, although he was able to consume the required (by me) minimum of calories.

These days were also harsh because his mom came to "help". Of course I understand her desire to come to New York as she is very worried and if allowed would move in with us to be around constantly. She is a very sweet woman but a whole package of various health problems herself. To begin with, she hurt her leg the first day of volunteering to take Tom to the hospital. My evenings were filled up with cooking four different dinners: shakes for Tom, something "tasty" that his mom would eat, something green and leafy that i would eat, and a special dinner for our spoiled baby dog.

I am glad I have insisted on Tom taking extra IV hydration as it helped a lot. We went to Brooklyn out-patient center, which I highly recommend everyone to visit (it sort looks sort of like a hybrid of a spaceship and a library, with touch screen computers for internet, temperature control, and (so important!) nice couches for patients' caregivers to stretch out).

So, now it's been 5 days since the last radiation. The surgery is tentatively scheduled for May 16. On one hand, I am worried that he would need to wait 6 and a half weeks. But I am also hoping that it would give him time to build some strength (he has always been skinny, but now is a string bean). His condition is still very miserable: he struggles to keep the food in, has some pain swallowing, and generally lacks energy. But he seems to be getting a little bit better every day. He would also need to undergo another medical procedure of installing a blood clot filter, but this has not been scheduled yet.

So this is were we are. Getting ready to celebrate our significant dog's 5 year birthday on Thursday, hopefully with meatloaf.

Comments

  • Unknown
    Unknown
    #2
    This comment has been removed by the Moderator
  • BMGky
    BMGky Member Posts: 621
    #3
    Things should get better for
    Things should get better for Tom the further away he gets from his radiation. My husband was depleted by the chemo/radiation regime. The last three treatments were, as the doctor said, intense. She wasn't joking. Bill was sooo sick. You need the rest between treatment and surgery. I'm proud of your trying to eat healthy. Bill would only eat what I would eat and he needed food with calories. That's my excuse anyway. I'm not that noble. Anyone coming to help would either eat out, eat what I eat or find some frozen dinners. I did good to manage Bill's care. Hopefully, Tom gets the MIE form of surgery, but to let you know, the Ivor Lewis form is doable. Bill had the IL surgery. Challenging. Recovery takes a while but except when hospitalized, he kept a partial working schedule which motivated him to move and strengthen his body. Actually, if your mother in law can get in a good visit, perhaps while he is feeling better, Tom can encourage her to get her rest at her own home.... It's about Tom and you and your spoiled baby dog. I'm so glad he is a candidate for surgery as this offers such hope for a positive outcome. I've found Stouffers frozen dinners can be a real help when you just can't face the kitchen. Hang in there. Mary
  • ArchTB
    ArchTB Member Posts: 150
    #4
    unknown said:

    This comment has been removed by the Moderator

    That's the plan!
    Hi William,
    Yes, we are still aiming for MIE with Dr. Rizk. But somehow it has not been set in stone yet as we need to wait for the PET scan results. Tom seem to be a good candidate for MIE and I would be insisting on it. If for some reason MSKCC would not approve MIE, I would need to have a Plan B, perhaps contact Dr. Luketich if he still has time and space for one more patient. But I do hope that MSK would approve the procedure, the surgeon seemed quite confident that Tom would be able to have it last time we talked.
  • ArchTB
    ArchTB Member Posts: 150
    #5
    BMGky said:

    Things should get better for
    Things should get better for Tom the further away he gets from his radiation. My husband was depleted by the chemo/radiation regime. The last three treatments were, as the doctor said, intense. She wasn't joking. Bill was sooo sick. You need the rest between treatment and surgery. I'm proud of your trying to eat healthy. Bill would only eat what I would eat and he needed food with calories. That's my excuse anyway. I'm not that noble. Anyone coming to help would either eat out, eat what I eat or find some frozen dinners. I did good to manage Bill's care. Hopefully, Tom gets the MIE form of surgery, but to let you know, the Ivor Lewis form is doable. Bill had the IL surgery. Challenging. Recovery takes a while but except when hospitalized, he kept a partial working schedule which motivated him to move and strengthen his body. Actually, if your mother in law can get in a good visit, perhaps while he is feeling better, Tom can encourage her to get her rest at her own home.... It's about Tom and you and your spoiled baby dog. I'm so glad he is a candidate for surgery as this offers such hope for a positive outcome. I've found Stouffers frozen dinners can be a real help when you just can't face the kitchen. Hang in there. Mary

    Things ARE getting better!
    Thank you Mary for your kind words of encouragement. It is tough, but I can see that things are getting better for Tom. He seems to be getting better sleep, not waking up every hour with nausea. He gets more energy and is able to join our walks with the dog, short ones for now. The spring weather is definitely a big bonus. It looks like the nature rejuvenation makes him feel healthier.
    We are planning for MIE, but would have to get the final approval upon the PET scan results. Keeping fingers crossed!

    Olya
  • linda1120
    linda1120 Member Posts: 389
    #6
    Thinking of You

    Thank you for the update on Tom. It will get better as his body regains strength and he is able to eat after the radiation and chemotherapy. You will get him built back up and he will want to start eating to make up for lost time. That is important before the surgery.

    I hope his mother goes home as you don't need another person to take care of. I am sure she means well, but you have your hands full. I would insist on take out or ask friends or your church to provide meals right now.

    I just wanted you to know I was thinking about you and am praying that Tom gets the MIE. This EC is one tough disease!

    Linda
  • ArchTB
    ArchTB Member Posts: 150
    #7
    linda1120 said:

    Thinking of You

    Thank you for the update on Tom. It will get better as his body regains strength and he is able to eat after the radiation and chemotherapy. You will get him built back up and he will want to start eating to make up for lost time. That is important before the surgery.

    I hope his mother goes home as you don't need another person to take care of. I am sure she means well, but you have your hands full. I would insist on take out or ask friends or your church to provide meals right now.

    I just wanted you to know I was thinking about you and am praying that Tom gets the MIE. This EC is one tough disease!

    Linda

    Thank you
    Thank you, Linda.

    As I've mentioned, every day Tom feels a little better. So over the last two days, there have been one more important achievement: he got his appetite back! He really wants to eat and says that he is hungry all the time. But the problem is that so far he cannot eat much or whatever he wants, as it would not stay. So, while salivating on food commercials on TV, he continues to sip on his shakes and be restrained to 4-5 "proven" types of food that he is capable of eating. I hope that the newly established appetite would make a push for his faster recovery!

    Tom's mom went back home. But despite the commotion, I am glad she was able to visit. We had some good laughs, and some change of routine, which helps to maintain my sanity.

    How are things with you? How is Jim? I am glad he is starting to enjoy homemade meals. Good luck on Friday, I hope that that pain next to the tube connection is nothing serious.

    Olya
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #8
    ArchTB said:

    Thank you
    Thank you, Linda.

    As I've mentioned, every day Tom feels a little better. So over the last two days, there have been one more important achievement: he got his appetite back! He really wants to eat and says that he is hungry all the time. But the problem is that so far he cannot eat much or whatever he wants, as it would not stay. So, while salivating on food commercials on TV, he continues to sip on his shakes and be restrained to 4-5 "proven" types of food that he is capable of eating. I hope that the newly established appetite would make a push for his faster recovery!

    Tom's mom went back home. But despite the commotion, I am glad she was able to visit. We had some good laughs, and some change of routine, which helps to maintain my sanity.

    How are things with you? How is Jim? I am glad he is starting to enjoy homemade meals. Good luck on Friday, I hope that that pain next to the tube connection is nothing serious.

    Olya

    Thinking of you
    Hello Olya and Tom
    Thank you for your update. So glad he will be having the MIE. I will be thinking of you both and praying for a positive outcome on the day of surgery! Keep in touch.
    Tina in Va
  • mccoy70
    mccoy70 Member Posts: 4
    #9
    ArchTB said:

    That's the plan!
    Hi William,
    Yes, we are still aiming for MIE with Dr. Rizk. But somehow it has not been set in stone yet as we need to wait for the PET scan results. Tom seem to be a good candidate for MIE and I would be insisting on it. If for some reason MSKCC would not approve MIE, I would need to have a Plan B, perhaps contact Dr. Luketich if he still has time and space for one more patient. But I do hope that MSK would approve the procedure, the surgeon seemed quite confident that Tom would be able to have it last time we talked.

    Surgery
    Hello,

    Just wanted to drop a note and let you know I had MIE surgery at Sloan last July. My doctor was Dr. Sarkaria and I have had excellent results so far. I had a clean CT scan last week (8 months and counting). Just thought I would let you know. Gotta go now but will try to write more later.

    Good Luck, you are in my thoughts and prayers.

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