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    Dragongirl shared an experience

    Decision Point (Thank you): I'd like to take this moment to thank all of you for all the support and help you have provided. It has been invaluable. I will continue to check with this site however not as often. Just know that you can beat this miserable disease. Don't let it rule your life. Fight it every step of the way but enjoy life too. Cherish Evey moment with friends and family. Celebrate each victory no matter how small. And know that we are all here to help in any way we can. So this is not goodbye just see ya a little later. Stay strong soldiers! :)

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    Dragongirl shared an experience

    Oh No (Health insurance issue): After threatening to cut insurance if he didn't return to work they are backpadalling quickly. He has agreed to return to work as he is eager to. Now that are saying Whoa we're not sure you Ade ready. They are sending running around getting reports. Instead of asking for all that is needed, they ask for one at a time and set up a really short time to get it. Now they supposedly have all that they need and are reviewing the case. The other issues is that we are feeling with doctors who can' t understand that my friend wants to go back to work. Why he doesn't just sit back and collect. No wonder we have people do just that if the doctors are promoting it. ThY can't understand that my friend is eager to get back to work and re enter the cancer free world and vet started with his new normal. So now he waits again for their answer. In the meantime never being one to sit still be has enrolled in classes and is moving forward. I so admire him. I am so in awe of his determination, perseverance and being able to keep a sence of humour throughout this whole issue. He keeps me laughing most of the time. So we have made it through this journey for now and look forward to the future. Out friendship not only survived this but but it is so much stronger because of it. We now it can survive anything now and is one of our strongest cancer fighting weapons. We will no longer give cancer a capital c and we have fought it and won. We know with multiple myeloma that there is a good chance of coming back. But now we can find it faster in blood tests and we know what is needed to beat it again. I lost an old friend to cancer this past March. She faght it hard but it had invaded Ber entire little body. Clinical tests kept he alive five years longer than she had been given and she saw her first grand child born. She was loved and will be missed. However, the friend I have been writing about here embarks on a new chapter of his life and is very much alive! We are now the. Dry best of friends and look forward to what lies ahead and our next journey.

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    Dragongirl shared an experience

    Celebration (Remission): My friend has his stem cell transplant in December of 2014 and he has been Cancer free since. He has had his follow up apts and had his last monthly bone strengthening treatment at the end of July. So now he is up to six month follow up apts. So he is approaching seven months cancer free. Yippee. Now his body is able to deal with healing from the fall last March when this all began to spiral.
    We are still taking things one day at a time but are able to make some short term plans and he is eager to get back to work.

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    Dragongirl shared an experience

    Procedure or Surgery (stem cell transplant): Haven't had the transplant yet but start stem cell harvesting on the 29th. So major chemo dose on the 20th of this month and then 5 days of Neupogen to increase stem cell production by the body on the 23rd. Then on the 29th they start harvesting the extra ells. Enough for two transplants. This may take one day or up to five until they get the amount needed. Then the Hickman line being inserted mid November (week of 10th) still playing with schedule so I can be there with my friend for this. Then we wait for a bed to have the second blast of chemo and the stem cells replaced. At that point we are looking at about up to three weeks in hospital as he will have no immune system while everything restarts. But he has been responding well for the chemo and numbers are back to normal. He is also young (48 yrs) and strong so a prime candidate for transplant. Looking forward to to his body getting a break after the transplant and keeping the cancer at bay if not gone for some time. 2% chance of it being gone completely. Fingers crossed for this. Or at least several years free before we see it again. Myeloma harder to eradicate then other cancers.
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    4 Comments
    • Rolltidelynne's Avatar
      Rolltidelynne

      This brought back all my memories lol:) I had my SCT two yrs ago this month!! I was in the hospital 17 days. It will be a slow process for recovery cuz he will be wiped of everything in his body! Please let him know when he starts to feel stronger don't be anxious to do a lot. Because he really will not be strong enough. I use to get so frustrated w my body cuz my mind would say you can do...but my body would just not cooperate:( My drs would say soon you will feel better but I wouldn't believe them cuz it seemed to take forever!! But they were ABSOLUTELY RIGHT! I did feel better, in fact I felt better than I had for yrs:)) But patience recovering is key!! Keep reminding them they will feel better in the near future just hang in there!!!
      Oh and tell them to eat ice the entire time in the hospital!! It will keep the mouth sores hopefully away!! Yes do the rinse but the ice is like a new thing they are discovering is key, too!
      I slept the majority of time in the hospital:)) it made time go fast and I didn't get sick but once and it was short lived!! Take whatever the nurses give cuz they KNOW what your family member needs!! Don't try to be a hero n ride it out:( please follow their directions and advice when it comes to meds!! I attribute my remarkable stay in hospital, recovery, etc to my nurses!!! He will be assigned a primary nurse and she will oversee the others and inform them of what he needs:)) it's amazing:))
      Also remember to take things from home that will make him feel happy n more comfortable:)) and make a list of "comfort foods" he likes and keep them on hand...he may not have an appetite and food may really bother him...but comfort foods you know he likes may entice him :)) they will stress gain weight! Gain weight!! Then they will say at least drink calories if you can't eat, so being prepared is extremely helpful!!!
      Don't worry his transplant experience will be fine;) the harvesting is a little uncomfortable only because the central line is awkward but that will pass quickly. They harvested enough for 3 transplants for me:)) very nice to know I won't have to go through harvesting any time soon lol:)) Lyne

      over 5 years ago
    • Godschild's Avatar
      Godschild

      same as Libhurst, adding, stay away from raw food, salads, fruit, and vegetables. Restaurants are a no no until the counts are high enough. Chicken soup was great. Water tasted metallic to me until the counts were high enough. Stayed in a single room for two weeks including my Stem-Implant day. When I went back for a visit, my nurse was very upset that I was discharged sooner since my counts were still low. When I went home, I kept throwing up for days. My wonderful friends made me chicken soup and matzo balls which hit the spot. I watched a lot of "I Love Lucy", anything funny.
      When I left the hospital, I remember taking all my clothes that I had in the hospital and washing them even though I did not wear them. The smell of the hospital was making me ill. The day I walked out of the hospital was a joyous day. I never loved New Haven as much as I loved it that day. Just to smell that fresh air was unbelievable. I had no choice but to stay in the hospital since had no one to stay with me if I was staying at a local hotel that the hospital provided. I lost 2/3 of my hair after the implant (three days later), when my friend drove me home I asked her to give me a buzz cut. I loved it. Got rid of all that chemo hair. Fortunately, it began to grow back slowly within a month. I wore scarfs all the time, I didn't realize how much my hair kept me warm!
      It was always nice when my friends took me for rides, being in the house all day can be tiring :)

      over 5 years ago
    • Rolltidelynne's Avatar
      Rolltidelynne

      See another reason this site is awesome. We fill in where the other leaves off:)) thank you Godschild those were important points!!! I lost all my hair over bout 3 -4 days. If I had it to do again old cut or buzz it immediately before it fell out!! My hair is important BUT not like before!! I think I left too early -17 days but they said ok. I kind of had set back with not watching wright loss when got home:( food was just guck!!!

      over 5 years ago
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