New Caregiver

Discussion Board Forums Introductions! New Caregiver

Viewing 15 posts - 1 through 15 (of 19 total)
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  • #83648
    lainy
    Participant

    Red, I just wanted to butt in here and say to your hubby, “THANK YOU for your Service!”. If you look at your first post and your last one, look how far you have come in just a few days. Good for you being the Administrator as knowledge is the best tool we have to fight this monster with. So many of us feel like we have graduated from CC 101. Now and then I like to toss out this story about my Teddy and his CC. I hope hubby gets a kick out of this. It is not enough that we have this CC krap over our heads, it had to come with a title few can remember or repeat. When Teddy was in, oh, his 3rd year of CC we had a couple from Milwaukee visit and went to our favorite Italian restaurant. Teddy was a Sicilian through and through and was wearing his CC bracelet. Rocky (yes Rocky) asked him what his bracelet said. T answers, “that is my cancer”. Rocky says, “Yeh, but what does it say?”. Teddy says “Angelo Carcinoma”. I had to turn away not to crack up and I was thinking, leave it to my Sicilian to make his cancer a Sicilian!?” Believe it or not we must find humor as it really helps get us through even the tough times.

    #83649
    red
    Participant

    Hi Debbie,

    What a nice welcome message! I am so happy to be connected here with everyone and I immediately felt right at home. It is a marvelous feeling of freedom to be able voice so many things that one deals with as a caregiver as well as with a patient.

    It was nice to hear that you were in a similar boat as I am right now. Like many men, my husband is not much into “talking things out”, especially when it involves anything emotional. (Right now everything seems emotional to me!) Hubby calls me his “administrative assistant” and like your husband did, leaves all the gathering of information up to me. Actually, I think he’d be fine if I didn’t do any research at this point in time because now he has complete confidence in his Oncologist. However, I can’t stop!!! I am trying my hardest to be resigned to the fact that there is nothing I can do other than provide support and reassurance for him when he hits a rough patch. Sometimes I think that if I had children like you do that they would be a great asset in helping us both deal with what we’ve been dealt. On the other hand, I can see that it would be added pressure, so I guess you just never know, right? One just has to live with the present circumstances and be thankful for what blessings we have been showered with. For instance, Hubby is so fortunate that he could have a resection. I had no idea at the time how few patients can. In addition, his tolerance of his first cycle of chemo has been really remarkable with no side effects other than fatigue.

    Thanks for your input and I feel better knowing that I’m not the only “worry wart” spouse out there. Poor Hubby, because he gets way too much mothering and smothering; a 30 year retired Marine finds that hard to swallow!

    Much gratitude to your for your support,
    Red

    #83650
    debnorcal
    Moderator

    Patricia,

    Welcome to our board. I’m so glad you joined, as we collectively have much experience to share and can be a great source of support and encouragement. I’m also so glad you connected with Lainy and are close enough to visit. It’s such a special experience to meet someone that has traveled this road. Plus, Lainy is just wonderful!

    Regarding your earlier comment about doing the research and wondering how much to share with your hubby, that was how it was with my husband and I as well. Despite Mike being a very capable analyzer of information in his pre-cancer life, I took on the role of chief information officer :). I researched the disease, providers, options for second opinions, treatment modalities. My husband was very stoic and didn’t want to know all the details. He trusted me to find the best options and guide him in that direction. I ignored all the grim statistics and pushed ahead with the next step. I guess my advice is that there is a big difference between worrying and being well informed. Of course I worried, but my primary focus each day was to find the best treatment for my husband and make it happen. Plus providing loving care while he was feeling awful. I also had three teenagers at home and had to remain calm and positive. It wasn’t easy but we got through it. We ultimately found an amazing medical team, at which point we were able to hand the reigns over to them and they found a way to save my husband with a successful resection.

    It sounds like you are doing a great job as caregiver for your husband. Congratulations on his resection. Please keep us posted on his progress.

    Debbie

    #83652
    lainy
    Participant

    Not a surprise at all since my Marlene (BFF) is the same. I am excited!

    #83651
    red
    Participant

    Lainy, This may come as a surprise, but you’ll know me by my red hair!!! See you on the 9th!

    #83653
    lainy
    Participant

    Red, it is puuuuuurfect! Will see you at 1000AM MDA coffee shop. I will be the short Grandma with the white hair. BTW they have a fantastic gift shop, I think on the 2nd floor.

    #83654
    red
    Participant

    Hi Lainy, We’re home after hubby’s second infusion yesterday. He has spent the last two hours today shopping at Home Depot so you can tell he’s full of energy once again!! You know how men love to browse in stores like that! The infusion went well just like the first time.

    What say you we meet for coffee around 10:00 am in the Deli at MD Anderson’s Cancer Center on November 9? If this isn’t a good time or if it isn’t convenient, please just let me know and we can make other arrangements. Really looking forward to meeting you!

    #83656
    lainy
    Participant

    Great, what works for you will work for me.

    #83657
    red
    Participant

    Super, Lainy!!! When I get home this afternoon, I’ll suggest a date or two to meet. I’m really looking forward to that a lot.

    #83658
    lainy
    Participant

    GREAT, Red. I am at your command. The 2nd week in Nov. is wide open so I am at your beck and call. I can meet you at the hospital and depending on the time frame we could do lunch there. Or in the neighborhood. Funny, my best lifetime friend is a gal named Marlene and she has red hair and born on Valentine’s day and goes by the nickname, “Red”. I call her Marlene and she calls me GLB for The Gutsy Little Broad! Looking forward to meeting you.

    #83655
    red
    Participant

    Marion’s, thanks for the support and suggestion. Hubby could have climbed Mt. Everest the day after his first infusion!! He started to “come down” around the fourth day. He’s okay with the differences now that he knows what to expect. I have a zillion things on his “honey do” list for tomorrow since he gets his second infusion today!!! (Just kidding, you know that!). Putting up with fatigue is totally tolerable compared with other more uncomfortable effects other suffer. For those I feel truly sympathetic. Let’s just hope the fatigue is the sum for him. Tomorrow he gets an injection of neutral (?) which he will not get on every ninth day. I haven’t read anything about that; i need to do some more research on that. I believe it is supposed to create white blood cells in the bone marrow????? Doctor told him to take Clariton day of injection and a few days after to try and ward off any bad effects.

    #83660
    red
    Participant

    Lainy, what a nice suggestion to meet! Next week is hubby’s week off but perhaps we can set something up the following week. I would love to get together with you. You have been through a lot and you have also witnessed so much through this wonderful website. It is very generous of you to offer your time. Let’s see how our schedules coincide, okay?

    #83659
    marions
    Moderator

    Red….most patients are wired following the first treatments. That is due to the steroids given in addition to the chemotherapy. But, chemotherapy is cumulative, hence fatigue is likely to set in with each following treatment. Make sure he takes in lot’s of fluids so that he can flush out the chemo, it will make a big difference. Good luck tomorrow.
    Hugs,
    Marion

    #83662
    lainy
    Participant

    Red, OMG, MDA Banner is about 12 minutes from me. Let me know if you would ever like to meet at MDA and we can visit. There is nothing as special as 2 CC patients or Care Gives to meet. You then feel you are not alone. All you have to do is way the word!

    #83661
    red
    Participant

    Lainy, I never did like roller coasters! However, that doesn’t mean that I can’t learn to, right? From all the postings that I’ve read, it’s very obvious that everyone’s seat on that ride provides a different experience. Personally, I think the front row would be the worse but then no one has a choice.

    We live in Goodyear, AZ and so the trip into Gilbert is a long one but we both feel that it’s worth it due to the confidence that we have in my husband’s oncologist, Dr. Kundranda. Actually, he was our second opinion having first gone to Palo Verde Oncology. It was they that recommended seeking a second opinion. Since my husband’s infusion is over five hours long, we have arranged to have his blood test and office visit the afternoon before the infusion the following day. We stay overnight at the Hampton Inn which is only a few blocks away and it is very convenient. Starting the infusion very early the next day allows us to beat the traffic on the way home, too.

    Tomorrow will be my husband’s second infusion and we both will go to the appointment much more relaxed since we now know what to expect. All of the nurses are extremely knowledgeable and attentive. The facility at MD Anderson is very calming and relaxing. It provides so much for not only the patient but also for the companion. There is a library of movies to watch, a lot of books and magazines to read, and even a patio with a view on which to sit. At 11:30 every day there is also lunch provided with a wide variety of choices, too. Pretty awesome, huh?!

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