Wheels are turning

The VA just called, they're contacting Dana Farber to approve the referral. Dana Farber just called, they have the referral from the oncologist and will discuss the case and call to set up an appointment. Wheels are turning. Update... Dana Farber appt is August 14. We just had another immunotherapy treatment. James is honestly doing quite well!

130.7 naked

James with milkweed, July 2019

James was pretty excited to show me the title # this morning. We've had a rough July. All through the immunotherapy treatment with imaging every 3-4 months we were told there was no new cancer movement/growth and all seemed good which may have been why I hadn't updated this blog. All seemed good, no news is good news, now unfortunately we have news...

The past month or so the pain has increased again. He's also continuing to struggle swallowing pills. We can cut up most and get by. The coated long-acting pain pill was a big problem. We were working with palliative care and our oncologists to figure it out. We've switched to a pain patch and that seems to be working thank heavens.

Secondary to that is we were thinking there was "fluid" building up in his neck per the CT scan results/reading. They wanted us to follow up with an ultrasound and MRI to figure out what this fluid was. They wanted us to follow up with the surgeon who would be responsible for managing the fluid.

We met with the surgeon prior to MRI and ultrasound. We asked about the fluid. He looked at the recent CT scan then the previous two CT scans (6-8 month span of imaging). Not fluid. Cancer has been moving/growing. Radiologists reading the CT scans completely missed it. Immunotherapy hasn't been stopping it, maybe slowing, not stopping. Should we have known 4-6 months ago? Yes. I've lost all faith in UMass Radiology and will let them know. Small stick incident with my foot backs up disillusionment.

The surgeon said make the most of your time, go fishing, maybe fish in July not wait til August. We met with the oncologist again, he called us after talking to the surgeon. Surgeon is concerned new cancer surrounds vessel. Oncologist is concerned new cancer is very near spine. We are concerned about it all.

We've been given three options at UMass two of which are chemo (I don't know that James would do chemo again) and one is some targeted thing. While we're not ruling the target treatment out the oncologist also said that Dana Farber may have more experimental treatment options. He's referring us to Dana Farber, he suggests we see them within the next two weeks. We're getting copies of all of the imaging, the oncologist is submitting the referral and transferring James' med history, the VA is working on approving the referral. The VA is currently covering 100% of James med costs. Thank goodness for the VA.

So our news is not good but we'll keep moving forward. Thanks to icecream season James is back up to 130.7 lbs naked (he was hovering right around 120 when we met with the surgeon which wasn't great). Current food is a couple bowls of oatmeal (with weight gain protein powder, butter and half/half) every AM, sporadic ensure/banana/protein frappes when I can get him to drink them, lot's of ice cream, italian ice, frozen fruit treats, soups for dinner current fave is cream of chicken. I'd love to find other rich smooth cream soups, a rich smooth beef soup would be nice. Chunky food is all still catching and sticking in his throat similar to full pills. Pills that we can cut get cut into 1/4 or 1/6 bits. Drinks are apple juice, coffee, beer. My gauge of how he's feeling is a beer gauge. If he drinks a beer in the afternoon I know it's a good day :^) little vitamin B.

He does love puttering out in the yard. He's got wild milkweed that he checks a few times a day for monarch activity. He has the tiniest of ponds with filter and fountain and shiners. He has a few gardens going with all kinds of lovely things. He caters to the wildflowers more than worry about grass. Given his current status, he's doing pretty well. Sleep is back downstairs, he's on the recliner and I'm on the couch. Sometimes brain won't sleep and he'll be vacuuming at 1 a.m. all good because I'm ok being up making the beads. My personal goal is to keep pain managed so he can do whatever he can do every day. Keep moving forward.

Thanks for checking in. We are sorry the news isn't better. Thanks for thinking of us/him and whatever positive healing vibes you can send. Enjoy your day every day. xxoo Beth and James

Things are happening...

James, 6 a.m. pre-surgery, 3/26/19

A few things happening last week this week next week...

Last week we saw the oral surgeon who is completely on board with our plan to wait and see. Nice to meet with someone who's ok taking it slow. He's private practice but had worked for the VA previously and is quite knowledgable with similar cases. Great guy. Teeth are on hold.

Today we came into the hospital crazy early for the combined day surgical procedure to enlarge esophagus space for ease of eating/swallowing and also Botox injection someplace in the trachea to relax spasms for better speech using the voice prosthesis. The surgeon said all went perfectly. He said we may not see any significant change for a week or so. He also said that he's not moving super fast enlarging esophageal space and that we can repeat if not enough.

James is pretty wiped out now, snoozing in the recliner. He's had a frappe and a little coffee. His throat is sore so we may not try any significant food until the pain is gone from the procedure. Maybe a nice smooth savory soup tonight.

This week we have a CT scan on Friday to check things in advance of the next immunotherapy infusion, hopefully still looking good! Next week will be follow-up with the surgeon midweek and immunotherapy at the end of the week, we'll see the oncologist on infusion day too when he'll tell us how the CT looks. Feels a bit busy medically after a nice lull.

All in all, we're well. Forging ahead :^) hope you are too! xxoo Beth & James

Forever and a Day....

No news is good news! So sorry for the month's long delay between posts. I think we've fallen back into living life...

So far so good with the immunotherapy. James has been holding steady, feeling less anxiety, resting when weary, rebuilding a bit of strength (I still ask him to open jars for me) and maintaining weight. Food continues to be tricky. Two of the weight gain smoothies per day plus whatever other "normal" food he can swallow works well to stay at 130 lbs. It would be nice if it went up but ok if it stays as is.

The surgeon is talking about doing the day surgery procedure to expand space to make it easier for James to swallow. Crossing fingers it'll happen. He's been craving "real" food and I have such guilt eating things in front of him that he can't. We graze and snack.

We just finished the 6th treatment yesterday. He's feeling a little flu-ish today which is normal. Achy and tired although just left to do a minor repair on my old beast of a car. He doesn't stop for much. We'll go for imaging before the next treatment although they said he's doing so well there's almost no need, they'd continue on with it no matter what the imaging shows (so they say).

James is leaving to do things without me more often and I'll pop out on my own too. We do still run most errands together and I go to all the med appointments but we're not quite as joined at the hip. He bartered with an older gentleman who was selling his house, worked for his snowblower. So now we have a snowblower and he's been out doing storm clean up. Our son stayed home for the last big heavy snow to assist. James tried to show me how to run it but I've decided I'm a shoveler at heart.

We're still not set up with the health insurance through the state retirement board. I need to resubmit the paperwork (the first set had been lost in the system) and I just haven't gotten around to it. It can't kick in until my wee pension starts and that'll take a bit anyway. I don't feel such a huge push for James with the health ins because the VA has been covering everything and will continue to do so. It's me and the kids that will enjoy that benefit. Although it'll be nice to know we can make snap medical decisions though without the long VA wait when we have the supplemental set up. Also nice that the kids will be covered again on a family policy until they're 26.

One recent negative is that a couple of James' teeth have broken off due to the head/neck radiation. We've gone to a VA dentist who referred James to an oral surgeon. James' teeth have never been great and the VA would like to extract them all. We're pushing back, it feels very extreme and would be life-changing as they are talking about not fitting replacement/dentures soon or ever. Hard enough losing speech and having the physical change of stoma. If there is a serious infection we can contemplate it but for now, we'll go to the consult, gather information, and hopefully leave as is.

A few things that people used to gift us are covered by VA now. The VA sends us 4 cases each month of the high protein ensure that I use in the twice-daily shakes and I submit for a refill as a med prescription. The lidocaine ointment is supplied through the pharmacy. This winter I've been using lidocaine on both his neck and lower back. Maybe we won't go back to the Biofreeze or maybe it'll just come into play when the weather is hot. Whatever he'd like we'll do. The VA also supplies gauze, cotton swabs, saline, etc, for cleaning the stoma (things I used to buy with Amazon Gift Cards).

We do still use/buy the GNC vanilla weight gain protein powder but can get it in massive bulk bags which last forever. Thanks to the young GNC guy who shared that secret! The VA nutritionist suggested alternate protein sources but James struggles with taste (on top of the swallowing issues) so I really don't want to mess with a good thing. I'll stick with the GNC product.

I've become a vanilla ice cream connoisseur shopping for the best low cost. We go through a few half gallons a week making the shakes (1/2 banana, 2 small scoops GNC protein powder, huge scoop or couple small vanilla ice cream, high protein chocolate ensure, a dash of milk, a drizzle of Hershey's chocolate syrup). Hood Golden Vanilla is my favorite ice cream, easy to scoop and very creamy.

I've had a couple recent incidences of spontaneous tears when going to pay the oil bill or electric bill thanks to loved ones who have sent gifts to the accounts. It's like I'm in the middle of a huge group hug, unexpected and hugely appreciated. We send thanks and love to you all.

Our current running "joke" as he works his way through his bucket list of projects on the house is that I'll keep adding to the list so that he'll have to stick around. I think it's working! Looks like thanks to the miracle of immunotherapy he'll be with us for a while yet :^)

Hugs from us to you. xxoo Beth & James

Great news

Dr. Walsh said that James' CT scan looked good so is moving forward with immunotherapy. He's scheduling 4 more treatments then another CT. Woohoo!

VA has paid for the recent appointments including immunotherapy yesterday. We're in the process of transferring scripts to VA too. It ends up that our Tufts insurance was purchased through the MA Health Connector "marketplace" which is federal and VA is also federal and you can't access both so James was dropped from our connectorcare "marketplace" policy. If I earned less money, if we qualified for fully funded Mass Health we could have used both Mass Health and VA. Would have been nice if they had sent a letter to let us know. Maybe a phone call. Maybe if someone had a clue with the 20 phone calls, 60 hours, day spent at the Health Connector office. Ugh. The VA is strongly encouraging me to have some kind of back up healthcare for James. As I can't access a paid policy as a self employed person for us as a family I'm looking into early "retirement" from UMass (worked there 1986-2000 and am vested in the state system) to pick up state retiree healthcare and collect the small state pension most of which would go to paying for the state healthcare which looks fairly expensive. Water under the bridge I suppose and worth it if the treatment is working.

Back to the happy news. James is well. 4th immunotherapy was yesterday. CT looked good (need to read results to see what "good" means). Onward and upward :^)

Ongoing health ins saga...

I was told at the end of the MA Health Connector call Friday to check 24-48 hours with the case # supplied to see that James health ins was reinstated. I called Monday and was told the case # did nothing for them as there are many different call centers, that they had no record of the Friday conversation, that they did not know why ins had been cancelled and wanted to try to reset the application which is exactly what the Friday person told me they were doing. I was on the phone with this new person for close to an hour before I finally disconnected saying I had no faith that if I went through the entire process again that anything would be different. When asked this call center person would not give me her name (I'd missed it when she said at the beginning of the call) and also would not transfer me to a supervisor. I feel badly in a way for these call center people as they're probably making minimum wage and dealing with stressed irate people but really? What the heck.

I made the decision to disconnect from call center to go to a local office and speak to someone in person. I needed to look someone in the eye and put a name to a face.

Yesterday afternoon I went to the local MA Health Connector office. I put an hours worth of coin in the meter. I waited 1-1/2 hours to be seen then spent close to 2 hours with a young guy named Angel who looked into every aspect of our situation. He called two supervisors one of whom was off. No one knows why James' insurance was cancelled. Angel is going to continue working on my case and is going to call me with an update today. I've told Angel that James has a terminal cancer diagnosis, we're unable to fill his prescriptions in a timely fashion because they now have to go through the "safety net" for prior authorization, I've told Angel the only current treatment hope is the immunotherapy which appears to be working and the next infusion is Thursday this week. I have not told Angel that the VA is inline to cover the oncology costs as the VA has been stressing to me that they are not an insurance and they should not be the reason that the insurance was cancelled. Will update once I hear back from Angel. What a nightmare.

Surprisingly I did not have a ticket at hugely expired meter.

Excuse the melt down....

Please excuse the last post insurance cancellation meltdown. We're really doing very well. James is either superb at rallying or the immunotherapy is working and I choose to believe the latter. We go for the next infusion Thursday this week. He and I have had some good productive time getting things done around the house, working, and prepping a new studio/shop space. Not the best time to lease a new studio space but gives us something to do and the to do was all about the painting this weekend. I tried not to hover TOO much as he was perched on the top of the ladder catching all the top spots. Yikes. Such good energy though. Hope it continues on....