And so it begins

Donna Faye
Donna Faye Member Posts: 427

The sun is finally rising but I have been awake for some hours. No matter how many times one faces the beginning of new treatment ( this is my 4th time), it is daunting. Once again I am beginning w/o a port. I do not know why this always is the way but it has been. (3 times I have had chemo more than 3 infusions and never a port) So today I face labs w/o a port and the poorest veins in my only usable arm. Then tomorrow the infusion, but they have promised the IV team will be there to find the vein on first stick. I am going to ask for a port tomorrow. 

I have reduced my household goods quite a bit and took basic things to my son's yesterday. He has my bedroom ready for the few things I will bring. We hung the curtains, discussed house rules and then went out for a lovely late lunch. I am so at peace with moving in with him and his mate. They have treated me with such love. I also know I will feel more relaxed living with someone when I am not feeling well; I will certainly eat better as both of them are wonderful chefs, and I will not have all the stuff to manage as I am retaining very little. 

My house sale has moved so smoothly and the couple buying it could not be nicer or kinder. If all goes well, I will be completely moved by March 2. Equity will go into savings for that end of life care that we all know will be.

I will report back around Wednesday or Thursday and let you know how things are going with this new and promising treatment of lenvina/keytruda. I would prefer not to be doing treatment again, but I also want to continue to enjoy this 80th year of mine. And if it is as good as they hope, maybe 81,82... hugs,df

 

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Comments

  • Fridays Child
    Fridays Child Member Posts: 251 Member
    Best of luck!

    Best of luck, Donna Faye!  You have everything arranged so well and I'm glad you're at peace with the arrangements.  We'll look forward to your report.

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933
    I love my port

    I've had it almost 4 years now and there's been no talk of removal. It makes things so much easier with labs and when I was in the hospital with sepsis, it was one of 5 lines I had. Anytime I need contrast for any testing my port is used. I would insist on a power port and br scrupulous about the people who access it. Good luck on your new adventure. 

  • Donna Faye
    Donna Faye Member Posts: 427
    edited February 2020 #4

    I love my port

    I've had it almost 4 years now and there's been no talk of removal. It makes things so much easier with labs and when I was in the hospital with sepsis, it was one of 5 lines I had. Anytime I need contrast for any testing my port is used. I would insist on a power port and br scrupulous about the people who access it. Good luck on your new adventure. 

    Thanks

    My son also told me to get a power port. Thanks for adding that as I am tired of the endless pokes.

  • Fridays Child
    Fridays Child Member Posts: 251 Member

    Thanks

    My son also told me to get a power port. Thanks for adding that as I am tired of the endless pokes.

    Power Port

    Power port is what I have.  It has just celebrated its second birthday, and nobody has mentioned getting rid of it.  CheeseQueen, they use that for contrast when you have a CT, MRI, etc?  Interesting, as they have not used mine for that. Wonder if I should request it.

  • MAbound
    MAbound Member Posts: 1,164 Member
    I hope all goes well this

    I hope all goes well this week so that you have a better idea of what the long term will be like. It's got to be rather liberating to not have so much to take care of otherwise. I know life got a whole lot easier for my husband and me when we cleaned out our old house and down-sized! I'm so glad you don't have to be alone for this.

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    Oh, Donna.  Your bravery and

    Oh, Donna.  Your bravery and practicality is so admirable.  I think that you are doing everything you can to make this easier on your kids, and to stick around as long as you can for them and your grandchildren.    When it comes down to it, we none of us know our expiration date, and there are new treatment advances being made every day.  Think of President Carter, who thought it was the end, and then a new antibody treatment vanquished his metastatic melanoma, a huge treatment advance.    I hope everything goes well, and easily, and that you have minimal side effects so that you can enjoy time with the family.

  • Donna Faye
    Donna Faye Member Posts: 427

    Power Port

    Power port is what I have.  It has just celebrated its second birthday, and nobody has mentioned getting rid of it.  CheeseQueen, they use that for contrast when you have a CT, MRI, etc?  Interesting, as they have not used mine for that. Wonder if I should request it.

    Son suggested for CT

    What on earth would we do w/o each other. Our combined wisdom is greater than any one cancer center. It was my son who does CT's that suggested I demand a power port as it makes all the imaging with contrast easier. df

  • Forherself
    Forherself Member Posts: 689 Member
    Prayers for

    Success in your treatment.  You are an inspiration with your strength and wisdom.

  • oldbeauty
    oldbeauty Member Posts: 319 Member
    Heartfelt good wishes and positive energy

    Best wishes, Donna Faye, for a calm and curing treatment process.  And, go for the port.  I've had mine for 3+ years.  I have found, though, that I have to go to certain facilities w/in my treating academic medical center complex to get blood draws and contrast infusion through the port.  I've been told that my medical center requires a nurse to access a port, as opposed to a phlebotist I guess.  At the central "name" cancer center that's never an issue.  But at the women's specialty center I'd have to make special arrangement, or wait, for a nurse to come and do the accessing and infusion.  The port install was easy; I elected to have "sleepy" sedation during the procedure and not just a local anesthetic injection.  Went quick, like a colonoscopy.  Best wishes, Oldbeauty

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    edited February 2020 #11
    I had my port put in under

    I had my port put in under local, but I did ask them to buffer the lidocaine with bicarbonate so that it wouldn't sting so badly when it was injected.  It went very, very easily.  I did unfortunately develop a clot in my internal jugular vein when they put it in - now I know that it was likely because of my underlying indolent B-cell lymphoma, not because of the UPSC, but we didn't know at the time.  If you have excessive tenderness at the insertion site, make sure to contact your doctor about it.  Don't wait for a week like I did!

  • MoeKay
    MoeKay Member Posts: 396 Member
    Best Wishes as you begin your new treatment

    I hope that tomorrow is smooth sailing for you, Donna Faye.  Wishing you nothing short of spectacular results from this new treatment regimen.  You are an inspiration for all of us on this board!

  • EZLiving66
    EZLiving66 Member Posts: 1,476 Member
    Donna, you sound so calm and

    Donna, you sound so calm and at peace with your decision. I am hoping and praying this works for you and you have many, many more years on this earth. I believe you have made the right choice in your living arrangement. We had a life estate on one of our homes back in Wisconsin with our son and daughter-in-law so if either of us needs to go back there either together or alone, we have a home there. Hopefully, we'll never have to use it but it's nice to know we have that option.

    Please keep us updated on how all this is going!

    Love,

    Eldri

  • Donna Faye
    Donna Faye Member Posts: 427
    as the sun sets

    I did get all the lab work today and it only required one stickSurprised I meet with the oncologist at 9 in the morning to learn all about this chemo pill. It is a 30 day supply but the box is so big I cannot imagine what all is inside. It says kit, so we shall see tomorrow. My daughter is going with me to take notes and help me remember all that she says. Then the infusion at 10 - says 3 hours but the actual infusion is only about 30 minutes unless they really put it on s l o w drip! So guess she wants me to have time to see how it goes with the first dose. Thank you all for your good wishes. I am so happy I can share with you. I have always been a journaler for my thoughts, but with all of you I want to share my innermost feelings. Thank you for reading and replying. 

  • zsazsa1
    zsazsa1 Member Posts: 547 Member
    Been thinking about you all

    Been thinking about you all day.  Glad it went smoothly.

  • Armywife
    Armywife Member Posts: 449 Member
    Popping On

    So proud of you!  I'd love to hear more about how you reduced your household goods.  I'm down to five days before the movers come, and I'm absolutely overrun with stuff - just possessions that don't matter.  I've donated literal carloads of it and have a bunch for sale on marketplace, but it's a time-sucking nightmare to deal with all the responses and no-shows.  Your post made it sound delightfully easy!

    I'm a big port fan as well.  Mine had no issues going in - I remember the whole thing.  Never gave me any trouble, and I loved going to see my nurse team every five weeks to get it flushed.  I planned to keep it several years, and was surprised when my new gyn/onc ordered it out, and then of course when I had it out in December had a huge hematoma and a bruise that was about 8" by 12" on my chest.  Still have a sore spot and a lump there bigger than the port was to begin with!  I wish I'd insisted on keeping that port!

    I just love that you are going to be fed by chefs and cared for, and that you have a daughter who will go with you to appointments!  Blessings all around.....and you are a blessing to us!!  So thankful we can all spill our emotions out here.  Let us know how tomorrow goes!  I'll be over here buried in old file folders, procrastinating packing some more!

     

  • Donna Faye
    Donna Faye Member Posts: 427
    Armywife said:

    Popping On

    So proud of you!  I'd love to hear more about how you reduced your household goods.  I'm down to five days before the movers come, and I'm absolutely overrun with stuff - just possessions that don't matter.  I've donated literal carloads of it and have a bunch for sale on marketplace, but it's a time-sucking nightmare to deal with all the responses and no-shows.  Your post made it sound delightfully easy!

    I'm a big port fan as well.  Mine had no issues going in - I remember the whole thing.  Never gave me any trouble, and I loved going to see my nurse team every five weeks to get it flushed.  I planned to keep it several years, and was surprised when my new gyn/onc ordered it out, and then of course when I had it out in December had a huge hematoma and a bruise that was about 8" by 12" on my chest.  Still have a sore spot and a lump there bigger than the port was to begin with!  I wish I'd insisted on keeping that port!

    I just love that you are going to be fed by chefs and cared for, and that you have a daughter who will go with you to appointments!  Blessings all around.....and you are a blessing to us!!  So thankful we can all spill our emotions out here.  Let us know how tomorrow goes!  I'll be over here buried in old file folders, procrastinating packing some more!

     

    Second time around

    Remember I downsized 25 years ago when I had my BC. I gave the children all they wanted and traveled for 3 years. So most of what I have/had now meant very little. I opened my house to young neighbors who needed odds and ends, donated tons of stuff and am keeping only one room of stuff. So yours is a bigger task and I do understand how overloaded it can be. Don't be afraid to toss stuff.

  • cmb
    cmb Member Posts: 888 Member
    Next steps

    Donna Faye – I'm happy to hear that you'll be settled in with your son and his mate as you undergo treatment. You are blessed to have the support of your son, daughter and friends during this time.

    Armywife – Good luck with your move. Thankfully I didn't inherit the pack rat gene that the rest of my family has, but I've helped family members with lots of stuff prepare to downsize. I'm with Donna Faye - call a junk removal company to come and haul away the leftover items. I've used different companies over the years and most have contacts with other entities to receive items that are still useable, but which you haven't found a home for yet. So it doesn't necessarily all go to a landfill. And if some of your folders contain personal information, check out the local office supply stores for their shredding services. While they will charge a fee, it could be tough to shred it all yourself, find a commercial shredding service or a free document destruction event in the remaining days before the movers arrive.

  • Donna Faye
    Donna Faye Member Posts: 427

    I did not start treatment. Thought we had all the bases covered but Alas, No. read my thread -Important for potential lenvima/keytruda patients!

  • Donna Faye
    Donna Faye Member Posts: 427
    This roller coaster is not fun

    I woke up Wednesday in the bluest mood. I had rolled all those side effects over and over in my head all night and suddenly was not sure I had made the best decision. The elevation of BP by Lenvima scares me as I do not want a stroke. So, not sure if the postponement for the BP to be lowered by new meds before I start was a good thing. I have always said I did not want to make myself sicker with the meds than the cancer. Now I am wondering if I should just go for the surgery and hope it goes well. Any thoughts or words of wisdom? as I know many of you have had many more treatments than I. Just had been ready to begin and then hit the wall. Head still spinning. df

  • Fridays Child
    Fridays Child Member Posts: 251 Member

    This roller coaster is not fun

    I woke up Wednesday in the bluest mood. I had rolled all those side effects over and over in my head all night and suddenly was not sure I had made the best decision. The elevation of BP by Lenvima scares me as I do not want a stroke. So, not sure if the postponement for the BP to be lowered by new meds before I start was a good thing. I have always said I did not want to make myself sicker with the meds than the cancer. Now I am wondering if I should just go for the surgery and hope it goes well. Any thoughts or words of wisdom? as I know many of you have had many more treatments than I. Just had been ready to begin and then hit the wall. Head still spinning. df

    It is scary

    The blood pressure increase is scary.  Be sure they explain to you how they will monitor and manage it if it does increase.  I'd think they would keep very close watch on you since it's a known issue. What do your kids think, in particular your RN son?