Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."
Sunday, May 17, 2009
I was quoted and didn't even know. I think Jon was online doing some googling last night, knowing that I wake up, and after getting my much needed coffee, head straight for the computer where I can work in silence until the little man gets up.
Uh-oh, door open and slam, here he comes. I can hear the quick-step, scuffling pitter-pater of his feet running around the house looking for me.
It's nice to know people are listening and have listened. The copy below is from The Valley News.
And I thought they missed me! How exciting.
A couple days ago I received a call from the wife of a man who is looking towards an autologous transplant at Dartmouth Medical.
It's liberating for me to have the ability to use my disease to help others. It gives my suffering purpose that I can bring some comfort to others who are going through what I have. I hope I can do this in an honest, candid manner that focuses on what can be done to improve the situation.
Marleigh wrote about me on her and her husbands collaborative bloghttp://nhsavageblog.blogspot.com/ in a posting entitled The Glass Is Half FULL. How appropriate.
I think we'll be speaking again next week after an important appointment of theirs.
Budget's Effects Are Deep And Wide
N.H. Legislators Get An Earful in Valley
By John P. Gregg
Valley News Staff Writer
Claremont -- Cancer patients, overwhelmed parents, recovering addicts and local officials last night all pleaded with House budget writers to restore funding for a variety of programs in New Hampshire's proposed two-year budget.
More than 350 people attended a regional hearing of the House Finance and Ways and Means committees at River Valley Community College, with many sharing wrenching stories of misfortune and voicing opposition to millions of dollars in cuts proposed by Democratic Gov. John Lynch.
Charlestown resident Hillary St.Pierre said she was diagnosed with Hodgkin's lymphoma three years ago and said she has had to ask for help with medical costs after exhausting her $2 million insurance maximum.
St.Pierre, who has had to give up her job as a critical care nurse at Valley Regional Hospital, was wearing a surgical mask and gloves to prevent infection after a second stem-cell transplant; she asked lawmakers to raise the cigarette tax, fund the state's cancer plan and save a catastrophic illness insurance fund Lynch has targeted.
“I suffer, not only from cancer, but from fighting for care,” said St.Pierre, 26. “Everybody should know exactly what even the most economically prepared, financially stable and educated patients suffer.”
West Lebanon resident Jessica Ellicott showed the panel a photograph of her 11-year old son, Sam, who is autistic, and said funding for family support services would “help us tremendously.
“I'm begging you to please not cut (off) the waitlist for services for family supports,” she said.
And Meriden resident Sara Burbee told the panel of the difficulties her family has faced because of a traumatic brain injury her husband, John, suffered when hit by another car.
Her 10-year-old daughter, Alyson, broke down sobbing in her mother's arms as the girl started to read lawmakers a poem she had written about dreaming of her father before the accident, and how she now feels there is a “stranger in the house.”
Several people who have gone through substance-treatment programs also spoke against potential cuts.
“I'm proof that treatment works … these programs will not survive a budget cut,” said Alisa Bento, now a counselor at Phoenix House, a recovery center in Dublin, N.H.
Thanks to federal stimulus funding, Lynch has recently backed away from a proposal to suspend $60 million in local aid from the rooms and meals tax, but local officials last night said other budget cuts were taking a major toll.
Hanover Town Manager Julia Griffin said her town stands to lose at least $126,000 from cuts in revenue sharing and the requirement that the town pick up more pension costs for municipal workers, which together would increase the town tax rate by almost 2 percent to make up the difference.
She also noted that Hanover is seeing increased needs for fuel assistance, its welfare caseload and social service agencies, even as other local revenue, such as that for building permits and car registrations, are dropping steeply.
Griffin also said the Hanover Selectboard had voted this week on a blunt message: “Any reduction in state revenues will be built directly into the town tax rate … and will be accompanied by a letter linking the increase directly to the state of New Hampshire.”
Another major Upper Valley community said the budget cuts would have a different -- even more dramatic -- effect.
Pointing to firefighters and police in the room, Claremont Mayor Deborah Cutts said the city would have to resort to furloughs or layoffs if Claremont loses as much as $1.4 million in state-related funding.
“We can't pass these cuts on to the citizens of our community,“ she said. “They can't handle it anymore.”
And Lebanon Mayor Karen Liot Hill pleaded for more school building aid.
“We definitely need the support to invest in our school buildings. We have a crisis with our junior high, and funding from the state will be crucial,” she said.
More than 50 people testified last night at a hearing expected to last some four hours, including several who spoke out against New Hampshire's heavy reliance on the property tax.
“I believe the time has come for New Hampshire to adopt an income tax” for educational purposes, said Meriden resident Rod Wendt. “We are far too reliant on property taxes in this state. It is not a fair tax.”
Claremont City Manager Guy Santagate said a legislative proposal to allow an exemption for part of the value of owner-occupied homes would ease the property tax burden in his city, while raising taxes on vacation homes in wealthier communities.
“The property tax is the worst tax on the face of the earth, but if you are going to stay with it, change how it is implemented,” he said.
State Rep. Sharon Nordgren, a Hanover Democrat who sits on the House Finance Committee, said the panel is holding regional hearings in Salem, the North Country and Claremont, as well as another series of hearings in Concord on Tuesday. Nordgren's committee will take up the budget after the hearings conclude.
Nordgren said the situation with the waitlist for services for families whose disabled or challenged children are turning 18 is “very sad,” but that some money for health and human service programs might be restored thanks to savings found elsewhere in state government.
Asked about the pointed message from the Hanover Selectboard about the “downshift” of the fiscal burden onto local towns and property taxpayers, Nordgren, a former Hanover Selectboard chairwoman, said, “It's true, but I don't know any solution right now with the tax structure that we have.”
While much of the testimony focused on health care, human services and municipal government, several artists also spoke against a cut to the state arts council.
“The arts are not frivolous,“ said Bente Torjusen, executive director of AVA Gallery and Art Center in Lebanon. “We need to recognize the arts help stimulate the economy while nurturing the soul.”
John Gregg can be reached at firstname.lastname@example.org or (603) 727-3213.