My life as a myeloma patient for almost two decades
I had an infusion of Zometa today and, as always, my left hand and arm ache. I didn’t get to have the IV in my hand like I usually do. The nurse said there’s just too much scarring now and she couldn’t get it threaded. We used my left arm instead. I’ll give that good vein in my left hand a long rest. It’s no wonder. I must have been poked in that hand at least 50 times.
If you get the chance, see the film A Lion in the House, which may be on your local PBS station on Independent Lens.
I have my stem cell collection scheduled. If everything goes according to plan, I would be admitted to Wake Forest Baptist Medical Center on September 20th. I’d have a catheter installed and then be given Cytoxan over the course of a few days. Then I’ll be released and sent home with a growth stimulating factor to inject for a number of days. Maybe a week or 10 days. Then I’ll go back to the hospital for the collection. I asked them to be sure they get enough for 3 transplants.
The catheter might look something like this. It’s surgically implanted and gives them the easiest means of conducting the chemo and apheresis.
I’m hoping the Cytoxan kills off a bunch of the myeloma and can allow me to delay a stem cell transplant for a while. If so, as soon as I relapsed, I’d have the SCT. I’m so worn out from the constant treatment over the last 3+ years.
I’m starting a campaign to raise money for the International Myeloma Foundation. Over time, through this campaign, I want to raise a penny for every stem cell collected and frozen in preparation for a transplant. With your help, more treatments and even a cure can be found. You can donate online HERE.
I took mom to see Dr. P. today. I was glad we went. It’s crazy. She hasn’t spoken to an oncologist at all since this started. Your doc sends you straight to a surgeon, who sends you for radiation if you need it. Wouldn’t you think it would make sense to talk to someone who knows cancer really well?
How do you like the new theme?
I haven’t been complying with treatment this month. Revlimid makes me feel pretty terrible, and I wanted to be able to help my mom through her surgeries and whatever other tx is needed. I do feel better in most ways, now that I’ve been off Revlimid for a month. I’m afraid to say that I didn’t tell anyone I was doing this. If I need to, I’ll go back on it in September. I don’t think it was doing much for me though. Just making me feel sick. I plan on having my stem cells collected soon, and they want the disease level as low as possible for that. I’m confused about whether the Cytoxan plays a role in that. I have an appointment with the “stem cell lady” next week, so I’ll find out. If I need to, I’ll do high dose dex again for a month or so. It seemed to work pretty well for me during January through April, but it was what I’d call a heinous treatment. I feel tired just thinking about it. Like I said before, I’m almost to a point where QOL on treatment is unpleasant enough to warrant a stem cell transplant.
Mom had surgery last week. A lumpectomy, which was intended to remedy DCIS and prepare her for radiation. However, on Monday, the surgeon’s nurse called and let her know that there was more cancer in the margins and that a mastectomy was in order. I don’t disagree with that. It seems the safest thing to do for the long term. But I want my mom to get a second opinion about what should be happening in the future. I think mom needs to be cared for in the long run by a specialist. I found someone at UNC, and the doctor there even called mom at home to see if she had any questions! Mom is shutting us down every time we bring this up. :(
In my own experience with cancer (albeit a different kind), I’ve learned that your health is in your own hands. You get out of healthcare what you put into it. Nothing more, unless you’re EXTREMELY lucky. I’ve seen so many examples of people putting their trust in doctors and nurses and then having nothing but heartbreak when the staff doesn’t care as much as one would think they should. Everyone needs to be active in every aspect of his or her own healthcare. This applies whether you have a disease or are healthy.
Anyway, please send some good enegry out to my mom so she can get through this. Help her to see how it could really help her to go to a specialist!
http://www.jupiterscientific.org/sciinfo/perseid.html
Make it a point to see this if at all possible!
Making a difference against multiple myeloma
Time is something Kathy Giusti has not wasted. She’s set out to find a cure for multiple myeloma; not just by raising money, but helping to solve one of the biggest obstacles in medical research. NBC’s Ann Curry reports.
http://www.msnbc.msn.com/id/14307508/from/ET/ (Video and transcript)
Dear SavetheInternet.com Member,SavetheInternet.com coalition supporters took to the pavement last week in 25 cities nationwide, delivering our petitions < http://action.freepress.net/campaign/savethenet> to their senators and urging them to oppose the phone and cable company attempt to gut Net Neutrality.From Buffalo to Fayetteville, Orlando to Seattle, the broad outpouring of public support for Net Neutrality came as the Senate’s August recess ended, and elected representatives return to Washington and the business of making laws. On Wednesday and Thursday, SavetheInternet.com supporters spoke back to the big phone and cable companies. Their message to Senators: “Don’t sell out the Internet. Serve the public interest. Support real Net Neutrality.”In each location, citizens urged their senators to place the needs of the public and our democracy ahead of the interest of phone and cable lobbyists.
Petition delivery events were held at senators’ offices in New York and Buffalo (NY); Fayetteville (AR); Des Moines; Detroit; Denver; Boston; Newark(NJ); Providence(RI); Baltimore; Portland (ME); Seattle and Spokane (WA); Eau Claire, Milwaukee and Madison (WI); Montpelier (VT); Wilmington (DE); Orlando (FL); Honolulu; Louisville (KY); Columbus (OH); Charleston (WV); Minneapolis; and, earlier this month, in Albuquerque and Santa Fe (NM).
You can follow ongoing developments at the SavetheInternet.com blog < http://www.savetheinternet.com/blog> .As senators return to the Beltway this week, their constituents have put the issue sharply into focus. We need to continue exerting pressure through September and beyond to ensure meaningful Net Neutrality protections in Congress.Thanks to you, there is now a growing sense of inevitability that Net Neutrality is something that politicians must protect under law.
Onward,
Timothy Karr
Campaign Director
FreePress.Net
SavetheInternet.com