Sis & I have had a weekend-long slumber party — I’ve stayed at her house on the couch so Matthew & I can alternate late-night requests.
A craftmatic-style bed arrived and Matthew picked out a great 40″ flat-screen TV — of course, she still seems to prefer the couch
We’ve watched a lot of football this weekend. Sorry to see Irish stumble. With the Titans off this weekend, Sis helped us set her NFL Fantasy team and is winning her game courtesy of a breakout performance by Peyton Manning. Her competitive fire is alive and well
While Sis was resting last night, Matthew got out a couple old-school sports board games — NFL Strategy & All-Star Baseball. We had to look up a number of players on the internet for the latter — it was a nice diversion and fun evening.
Otherwise Sis has generally been alert and agreeable. She’s napping a lot but her appetite is good and pain seems manageable.
She enjoys chewing gum, so I gave her some Big League Chew yesterday that accidentally turned her teeth green. After brushing she was good as new!
Mom made a big pot of homemade chicken noodle soup today and pumpkin muffins that everyone enjoyed. I hope my being here is rejuvenating Mom and Matthew — they hardly ever get a break.
Matthew is taking another week off work, but I have no immediate plans to return to Ohio and will assist/sleep over as needed.
We appreciate everyone’s encouragement and prayers the last few days. Please keep them coming, as we will for you! — Love, TRH
Greetings Jen Nation! Sorry updates have been sparse lately.
I came down a week and a half ago to prepare for a trade show and help with my sister. She was alert and in good spirits, but clearly declining since I saw her 3 short weeks earlier.
Her body is rapidly quitting on her, making her more sedentary and dependent on us for basic needs. Before my Dad & I left Saturday for the trade show, she stayed on my parents’ couch a few nights to give Matthew a break. We were able to get her to the bathroom a few times daily with her wheelchair.
She did start developing serious pain and cramping in her legs, partially due to muscle atrophy. We had planned another round of chemo at Vandy Wed 10/1, and she was dreading blood work because the portacath in her chest was malfunctioning.
Regrettably, after much effort to get her to Nashville, her appointment wasn’t in the system and they were totally booked for the day. There was no sense arguing, so we rescheduled for Friday. She seemed relieved and we headed home, picking up a couple milkshakes along the way.
Friday morning she was in immense pain and her good leg was tremoring, which consumes a lot of energy and becomes painful. She started moaning and I rushed to her side to challenge her through it. We cancelled the chemo appointment and agreed to reevaluate her treatment over the weekend.
Dr. Edgeworth at Vandy said continued chemo may only extend her outlook 1-2 months, and thought she may be ready for hospice care. As such, with our full support, she and Matthew are suspending the chemotherapy, and a hospice worker visited their house yesterday. A new bed to increase her comfort should be delivered within a couple days.
Tuesday seemed like an especially hard day. She experienced hallucinations and was unusually hard to engage in conversation and activity. I called Wednesday morning and spoke with her briefly. She asked about the show but sounded groggy, which is understandable in her medicated state.
So we’re very concerned and pulling together as a family. Her 40th birthday is 10/24 but any sort of gathering appears impossible. Many of you have expressed interest in seeing her, which we truly appreciate and hope to accommodate in the coming weeks. Right now she’s just sleeping a lot and trying to put together a couple “good days” in a row, and generally not up for visitors.
It’s largely in God’s hands, which is the ideal place considering how He’s blessed us thus far. She surprises us almost daily, so we’ll keep giving her things to fight for, as she does for us.
I’ll keep this journal updated more regularly so my parents and Matthew can focus all of their waning energy on Sis. Our apologies in advance if they’re a little less accessible in the near term. Your prayers and support continue to provide the strength we need — thank you! — Love, TRH
I am so sad today. Jen has been my “lil Sis”, even though she was my ‘boss’ of sorts, before TR came to my Principal to manage sales. She and I see things the same in an overall political light, although she isa sweet, caring person who never lashes out the way I do. Our personalities were different, but we love each other… much like brothers and sisters do.
But her real brother is now becoming my ‘Lil Bro’ as we get to know each other (and we aren’t as alike, but have a tremendous amount of respect and adoration for each other). When I read the post above, it occurred to me how strong and wonderful a brother he is to Jen and I can only be proud to call him my ‘Lil Bro’.
If you pray, please pray for Jen. If not, just send some sort of warm vibes for her… just a warm thought or wish, even. She is the most wonderful person. She deserves a break.
Sorry I’ve been asleep at the switch. Hasn’t been much news good or bad in the last two months — we’re certainly thankful for the latter.
Visited TN briefly last week and saw my sister. Her attitude remains amazingly joyful and unflappable. Unfortunately, her body and strength are not faring as well. Her left side is shut down for the most part, and her right knee is strained and swollen from trying to compensate.
Mom & Matthew are never far from her side, and therapists visit periodically to keep her as active as possible.
Matthew has hired a contractor to remodel their main bathroom over the next couple months to better accommodate Sis’s needs.
Sis goes to Nashville this week for another dose of chemo, then she may see Dr. Edgeworth and undergo another MRI on her next visit.
Notre Dame and fantasy football season are sure to boost her spirits. Matthew, Sis, myself and several friends from Accu-Router have an online NFL fantasy league, so we’ll be jockeying over the next few months for supremacy.
My mom’s foot is healing on schedule, and hopefully she’ll shed her boot in the next few weeks. I’ll be heading back down in late September for a week to help out before going to a boatbuilding tradeshow in Miami Beach. We’re taking a machine and hope to attract several prospects looking for a head start out of the downturn.
Our current hope is for the chemo to keep containing new growth, and that my sister’s energy and strength may improve. Thanks for your continued prayers and support — ours are with you! – Love, TRH
We’re not sustaining our early pace on page visits — has my writing gotten stale? Ha ha — maybe I’ll get my Mom or sister to do a guest column again!
Well my sister and Matthew met with Dr. Edgeworth today in Nashville to review the first MRI under the current chemo. Drumroll …
He almost couldn’t believe the improvement! Not only is it containing the cancer but may be beating it back! He wants her to keep taking chemo every three weeks and see him again in 6 weeks or so …
Dr. Edgeworth has really been a Godsend. I heard there was an issue with insurance covering the Avastin, and he said he’d personally see that she received all necessary treatment.
My sister would tell you that she doesn’t quite feel the improvement physically yet, but some encouraging news is a long-awaited load off her mind. We’re far from out of the woods, but at least we found a more peaceful trail that might lead a new direction.
She also feels the physical therapy is restoring some strength in her legs. Plus she’s becoming a very savvy player of the Manipulation card game Granny taught us at the lake — ha ha
So your prayers and support continue to make the difference. We remember all those whose news today may have not been so good, and pray we can all help each other through. – Love, TRH
Update from Pops:
After a prolonged period of challenge, Jennifer received good news this morning at Vanderbilt from her primary neurologist. She had a MRI this morning after two treatments of Avastin + chemo mix. The alarming growth of her level 4 brain tumor cited after the unsuccessful scorpion venom therapy over the first quarter at UAB has been restrained. Her doctor was amazed at the improvement. Avastin is still a very new drug, even not accepted on most major medical insurances. It is designed to starve blood flow to a tumor, therefore killing it internally via a lack of food. The shiny areas of the UAB MRI and the merged areas were all much better. This is not to suggest that Jennifer is cured, out of the woods, or even in remission. Her cited rapid growth is abated. She will receive treatment # 3 next week and then two more three weeks apart thereafter. Vanderbilt wants to do another MRI in 9 weeks. We only can hope and pray for some continuance of good news. The Avastin has also improved her overall quality of life - less pain, easier movements, etc. Needless to say, Jennifer and Matthew are thrilled with this news. This is the first really positive news we have had to share in quite some time. We appreciate all your support with this challenge.
I met my family at Lake Chautauqua (NY) WED-SAT last week. My sister and Matthew had been there since Monday. Check the PHOTOS section …
She tolerated the trip pretty well as long as she paced herself — which actually applied to all of us!
There was plenty good to eat — sponge candy and orange chocolate from Buffalo, Perry’s “Piece of Cake” ice cream, breakfast and dinner at Hotel Lenhart …
We played 9 holes of golf most days — Matthew even played twice and is getting the bug that afflicts me and my Dad (ha ha). Granny had the best shot Wednesday on a steep downhill par 3 that overlooks the lake!
I joined my Dad for fishing THU & FRI morning — we could not subsist on our fishing skills — ha ha. He actually did quite well, catching a small bass, a couple sunfish and a perch, none of which unfortunately were large enough to keep. I hooked the anchor a couple times and hauled in lots of lake weed, but we had lots of fun!
Granny also taught us a new “rummy-based” card game called “Manipulation”. Supposedly cousin Julie brought it down from Detroit. My sister even got in on a few hands the last day before we shut down the “Parlor B Casino” — ha ha!
Mrs. Blair visited the first of the week, then Granny thru Saturday. I was able to drive her back to Smethport, enjoying some quality time and getting a big bag of chocolate chip cookies for my effort!!!!
Aunts Ellen, Marie, Uncle Larry & Smitter also drove down from Buffalo multiple days, which made it extra special.
As we watched fireworks in the distance from the shoreline ablaze with red flares, it surely seemed like a special occasion none of us will soon forget.
A little back to reality — Avastin treatments resume this week, so your ongoing prayers and support are appreciated. You know ours are with you! — TRH
Seven hours all told today at the Vanderbilt Clinic. We were in the Infusion Clinic where the actual IV chemo is administered for the better part of five hours.
Everyone is very nice. They have a volunteer board that bakes treats and donates refreshments for patients and their families.
Dr. Edgeworth came by for my sister to sign some permits. She has great confidence in him; she said he memorized her entire 9-year history before their first appointment, not even bringing in a chart! She’s been blessed with a string of talented doctors — Bingaman & Stevens (Cleveland), Nabors & Beth at UAB, and Edgeworth at Vandy.
She may experience some mild side effects with the blended Avastin/CPT-11, most simply alleviated by common OTC drugs. As her system processes it, it may reduce swelling and allow her to cut back on steroids. Doc had an encouraging twinkle in his eye, saying he thought this would work.
We stopped on the way home in Murfreesboro, having sandwiches at Jason’s Deli and a treat from Marble Slab Creamery. I’ll never forget savoring ice cream with her and my Mom in the setting sun, getting away from our cares if only for a fleeting moment.
On the way to a fun dinner last night at Olive Garden, she made a poignant observation: “I can’t remember not being sick.” Not a complaint — NEVER … just a gut check for a fighter digging down for another burst. Nine years is a long time, but it’s been blessed with many miracles that we too often neglect to rejoice.
We’re hopeful she can take her long-awaited vacation to Chautauqua (NY) with no cause for concern. Her greatest discomfort tonight is from the port, where they actually had to cut muscle to bury it in her chest. But it will make future doses every three weeks much easier without needles.
Your prayers and support continue to make the difference. This thing doles out punishment every day, but we keep finding reasons to fight. – TRH
Well, a less than healthy 3-week break is all my sister is granted this round.
She’s heading to Vandy tomorrow to receive a “porta-cath”, which is basically a needle they can leave in her arm for the duration of the Avastin chemo treatment.
She’ll then get her first dose on Wednesday morning, then hopefully we can bring her home.
From what I hear she’s had more bad days recently than good. Balance and walking are fairly poor.
She’s just disgusted with poisoning her body for seemingly no benefit. We hope the chemo gives her some relief and she’s healthy enough to go to and enjoy the Lake over July 4.
Thanks for your prayers and support — ours are always with you! — Love, TRH
B’Man: I have an ongoing series of reports on my dear friend Jen relating to her glioma (brain tumor). I mentioned that it is similar to Teddy Kennedy’s tumor here. Since Jen has become sick, especially in the last 6 months (she has been diagnosed since 1999, which it is a miracle she is still alive this long… most prognosis only give a few years), I have been investigating and reading about therapies that can be used for her (the venom treatment was clinical and doesn’t appear to be working for her).
However, I read this article (which contains a video I will post below) which tells me something that I had suspected from a previous friend’s cancer and his insistence that marijuana was helping him. Of course, that is no clinical trial, but I have witnessed more than one person who swears they are helped by medical marijuana. As a matter of fact, I can attest to its pain functionality.
So, I sent Jen and her hubby an email with this post’s info. I am no prude, so those who use for fun… have right at it. Enjoy and watch out for Big Brother. However, for those who are frightened by it, the law and what may happen… fuck them. If I was dying and this could help, they can all just suck my ass.
The fact is that Big Prison keeps this medicine out of the hands of hurting people, but not only that, out of the hands of the researchers who could isolate the actions of the drug and use it to HELP PEOPLE.
Damn, I get pissed about this. It is a travesty.
I doubt that Jen has ever even seen marijuana and it is unlikely that she could beat the stigma associated. But, in my opinion, she should do anything and everything that will help alleviate her sufferring or, as miracles may happen, heal her. without the research into this wonder drug, we will never truly know.
I love you, Jen. Keep fighting, darlin’.
Can Pot Extend Ted Kennedy’s Life? Too Bad It’s Illegal
by Paul Armentano Posted on May 23, 2008
In the 14 years I’ve worked in marijuana law reform, few events have struck me as so needlessly tragic as the federal government’s consistent and deliberate stifling of medical cannabis research. Nowhere is the Fed’s refusal to allow this science more overt and inhumane than as it pertains to the investigation of cannabinoids as anti-cancer agents, particularly in the treatment of gliomas.
As noted in today’s wire stories regarding Sen. Edward Kennedy’s diagnosis, glioma is an aggressive form of cancer that affects an estimated 10,000 Americans annually. Standard treatments for the cancer include radiation and chemotherapy, though neither procedure has proven particularly effective — the disease kills approximately half its victims within one year and all within three years.
But what if there was an alternative treatment for gliomas that could selectively target the cancer while leaving healthy cells intact? And what if federal bureaucrats were aware of this treatment, but deliberately withheld this information from the public?
In fact, the first experiment documenting pot’s anti-tumor effects took place in 1974 at the Medical College of Virginia at the behest of the U.S. government. The results of that study, reported in an Aug. 18, 1974, Washington Post newspaper feature, were that marijuana’s psychoactive component, THC, “slowed the growth of lung cancers, breast cancers and a virus-induced leukemia in laboratory mice, and prolonged their lives by as much as 36 percent.”
Despite these favorable preliminary findings, U.S. government officials banished the study and refused to fund any follow-up research until conducting a similar — though secret — clinical trial in the mid-1990s. That study, conducted by the U.S. National Toxicology Program to the tune of $2 million, concluded that mice and rats administered high doses of THC over long periods had greater protection against malignant tumors than untreated controls.
However, rather than publicize their findings, government researchers shelved the results, which only became public after a draft copy of its findings were leaked in 1997 to a medical journal which in turn forwarded the story to the national media.
In the years since the completion of the National Toxicology trial, the U.S. government has yet to fund a single additional study examining the drug’s potential anti-cancer properties. Is this a case of federal bureaucrats putting politics over the health and safety of patients? You be the judge.
Fortunately, in the past 10 years scientists overseas have generously picked up where U.S. researchers so abruptly left off, reporting that cannabinoids can halt the spread of numerous cancer cells — including prostate cancer, breast cancer, lung cancer, pancreatic cancer, and in one human clinical trial, brain cancer.
Writing earlier this year in the journal Expert Review of Neurotherapeutics, Italian researchers reiterated, “(C)annabinoids have displayed a great potency in reducing glioma tumor growth either in vitro or in animal experimental models. (They) appear to be selective antitumoral agents as they kill glioma cells without affecting the viability of nontransformed counterparts.” Not one mainstream media outlet reported their findings. Perhaps now they’ll pay better attention.
What possible advancements in the treatment of cancer may have been achieved over the past 34 years had U.S. government officials chosen to advance — rather than suppress — clinical research into the anti-cancer effects of cannabis? It’s a shame we have to speculate; it’s even more tragic that the families of Senator Kennedy and thousands of others must suffer while we do.
B’Man: For those who may have been following Jen’s illness, we received a report yesterday from TR and the news is not the best. However, Jen is still heroic and probably the most amazing person I have ever known. Please, no matter what your religion (or not), consider her in your thoughts, wishes and/or prayers. I know of no one who has ever met this beautiful person who did not love her immediately. She is just one of those rare people. Pass some love back her way. If nothing else, please comment either here or at CaringBridge site (click the read Journal link or Sign Guestbook link). I am sure she would love to hear any encouraging word.
FRIDAY, MAY 23, 2008 05:10 PM, CDT
Released, Staying in Birmingham Tonight
Entry by TRH from Ohio
Greetings Jen Nation!
Just spoke with my sister. She’s feeling better than yesterday and was released at 2pm.
The biopsy results unfortunately showed tumor cells, which suggests the radio-venom was marginally effective at best. Such can be the case with clinical trials. Not sure how much new growth, but any is great cause for concern in Grade 4.
Soooo, they’ll likely administer intravenous chemo (maybe Avastin) every 2-3 weeks for a while, starting very soon. She can get her doses at Vanderbilt, which is a couple hours closer than UAB.
I told her I was just happy she was back on her feet and out of ICU. She said, “Surgeries are no problem, it’s when they come in with a needle to draw blood. Hit me with a car, do anything but stick me with a needle!”
That made me chuckle and must be a family trait. Every time I donate blood I tense up like a little baby but it’s a small price to pay.
As such with her, they may insert a “pickle” (if I heard correctly) with a permanent IV or a port that can be easily re-accessed, though it does carry a risk of infection and must be treated with care.
Hard to give her encouragement because we have no idea how much she endures every day, but she’s gracious and feeds on our support all the same. It’s about all we can do, which doesn’t seem like enough.
Please keep the prayers coming — ours are with you too! Have a safe, happy Memorial Day weekend. — TRH
Dangit, I love this lady and she doesn’t seem to be getting many breaks in this illness. TR updated the Caringbridge journal yesterday afternoon and blew my mind with what happened (they were expecting a needle biopsy):
WEDNESDAY, MAY 21, 2008 08:45 PM, EDT
Today’s Procedure More Extensive Than First Reported
Entry by TRH from Ohio (I think)
Greetings Jen Nation!
No cause for concern, but my sister actually underwent craniotomy #6 today — third in 2008 alone. Rather than a needle biopsy which I’d heard initially, sounds like her medical team wanted to go right to the source of the MRI “enhancement” and extract some cells.
According to Matthew, the procedure took ~2 hours and she was hungry afterwards He was able to see her at 2p ET — she had a headache (go figure) and was drifting in and out of sleep.
Should have biopsy results within 3 days, so that’s something to pray for. They will keep her in ICU overnight for observation, mainly watching for internal bleeding.
With any luck she’ll be discharged tomorrow and they may start making their way back to Tennessee, depending on how she feels. I’ll suppress a rant on the state of the healthcare industry.
God continues to shower us with blessings — we pray you get your share, dear friends. Keep you posted … — TRH Read Journal
B’Man: Besides being a stalwart progressive, Jen’s tumor is very similar to the tumor illuminated in recent news of Teddy Kennedy’s afliction. I keep them both in my thoughts and prayers.
From TR:
WEDNESDAY, MAY 21, 2008 08:53 AM, CDT
Important Exam Underway at UAB
Entry by TRH from Tennessee
Greetings Jen Nation!
After an uplifting visit with my Aunts Ellen & Marie and cousin Larry, my sister and Matthew departed for UAB Monday evening.
News yesterday seemed mildly encouraging, and at least not bad. Majority opinion was “intensified area” in last MRI was a “cold spot”, maybe the lingering effects from the radio-venom treatment vs. something more serious. They felt her health was good otherwise, though we’ve all been concerned in recent weeks.
Apparently also yesterday she learned about a bracelet that will help keep her fingers straight on her left hand.
They were to sedate her this morning and run further tests. I believe the needle biopsy is still slated also.
She text-messaged me last night asking for prayers, so she’s still understandly concerned about results for this round.
Senator Kennedy’s diagnosis with a brain tumor has received much national news coverage. We certainly hope he like all patients receives treatment that prolongs his outlook; it may also give much needed visibility to the cause.
We’ll let you know what we find out today. Thanks for your prayers and support — ours are always with you! — TRH
The new MRI is scheduled at UAB for next Monday, May 19. Come what may, hopefully it will be conclusive enough to allow definitive treatment moving forward.
My sister is hanging in there, though the uncertainty has to be maddening. Based on what she and Mom tell me, she’s not showing the sustained improvement we’d hope to suggest the radio-venom was highly effective.
It sometimes feels absurd telling her to “hang in there”, because truthfully I cannot imagine the pain and frustration she’s enduring everyday. I really wish we could trade places for a week to give her some relief, but that’s not God’s plan.
But we will keep thinking positively — who knows what we’ll learn next week! My aunts Ellen & Marie and cousin Smitter are visiting Tennessee this week, which will give everyone a boost of joy and strength.
I’ll be heading down the second half of the week myself to make sure no one makes too much fun of their Northern accents — ha ha!
But we feel you all from afar and continue to appreciate your prayers and support. You know ours are always with you too! – TRH
Just spoke with my sister who heard from UAB this morning — where else can you get such timely, free news coverage!?!?!?
Unfortunately no consensus yesterday among the doctors reviewing the “brightened area” in the MRI. Dr. Fivash (radio-oncology) still thinks it could be lingering effects from the radio-isotope. Dr. Nabors (neuro-oncology) thinks it could be more serious, and Dr. Guthrie (neurosurgery) is “puzzled”, in my sister’s words.
So I’m sure it’s frustrating for my sister to be in a holding pattern, but I’m glad the doctors care enough to be absolutely sure.
So they’ll now schedule her to come back to UAB for another MRI, but this one has some advanced characteristics that will hopefully bring the medical team to consensus regarding ongoing treatment. Depending on that, a needle biopsy also may follow.
Sis reminded me she is a Grade-4 (on a scale of 5), making it all the more important that they make the right decision in a timely manner.
So let’s pray for the doctors and my sister to hang in there a little while longer! Thanks for your prayers and support — ours is with you too! – TRH
Greetings Jen Nation! Sis and Matt are on their way back home.
Sis had her MRI at 12:30p today and met with doctors. Good thing they had a Walgreens One-Hour Photo around the corner — KIDDING!
MRI showed some “enhancement”, or bright contrast in the tumor area. Matt thought most of the mass from the January surgery was still gone, which would be great.
Medical team meeting next Tuesday to debate cause of enhancement. Sometimes it can mean new growth, but in this case, it could also be lingering effects of the intense radio-venom that may subside over time.
So as this often goes, we’re still winning the battle, but no knock out punch. Depending on outcome Tuesday, they may want her to come back for a biopsy to compare tumor composition to that extracted in January. That would tell a lot.
Otherwise, your prayers, God’s grace and my sister’s will are carrying the day. Your support means everything to us! Keep you posted in the coming days! – TRH
Howdy to those who have paid attention to Jen’s progress. You can see how I have followed her condition and treatment here.
Last week when traveling, I got the chance to spend a couple of days with Jen and ate pizza with her and her husband (another radical progressive stuck in a red state… when will the rest of you wake up?). She looked great for someone that has had her head cut on, radiaition and chemo (and now the scorpion venom treatment)… no telling what else.
From her CaringBridge site her brother keeps up-to-date:
Greetings Team Jen! Hope everyone is thawing out and enjoying some nicer weather.
Just heard today that they were able to move up my sister’s MRI to THIS THURSDAY, so we won’t have to wait as long for feedback! I know the waiting has been aggravating for her and Matthew.
I actually saw Sis this weekend while in Tennessee. Therapy continues to help her strength and coordination. We had some important meetings at Accu-Router THU & FRI — she joined us both days and really contributed!
Then she and I saw the movie Leatherheads on Saturday; it was pretty cute.
I can see marked improvement since Christmas, and her attitude remains phenomenal.
So I think she, my Mom and Matthew will drive down to UAB Wednesday. Especially now, thanks for your prayers and support — ours are with you too! I’ll update this site as news develops. – TRH
