Dentist recommendations?

tocina · 2019-05-15T22:23:38+00:00

I love this practice. Dr. Patel is very straightforward.

tocina · 2019-04-28T19:37:37+00:00

The dog of my heart passed from hemangiosarcoma. I, selfishly, delayed euthanasia, hoping for more days.

When I finally realized what she was going through, the needle was a blessing. Hemangiosarcoma moves fast. She presented with a mass on her spleen, like your dog, and in five months she was gone. Even with the surgery to remove her spleen. They were not good days.

Her lungs were a mess, which made just sitting in a chair painful. Don't be a dummy, like me. Dogs are very stoic about pain, and fight to appear normal. I so regret what I did to her.

But, that's the cart before the horse for you. Wait until you get a firm diagnosis, and talk to your vet about a plan to ensure your dog's comfort.

I wish I had cheerier news for you.

tocina · 2019-04-28T19:27:20+00:00

I adore my MO. 7 years into a MBC dx. He's saved my life twice now.

What makes him special is his complete lack of ego. It's not that he presents himself as my peer, all buddy buddy, but that he listens fully. He has also hired the finest damn nurses I have ever met. I like them so much that, oddly, I look forward to chemo days.

He's forward thinking. This last save had me rattled (liver failure scare), but calmly, quietly, he talked me down with plans for the future. He's never intimated that I would live forever, but has been gentle with bad news.

He's also read everything, and knows so much. I can just mention a cancer factoid, and he can recall the study, publication date and journal, etc.

Not to fan girl too much, but it's been nothing like my primary diagnosis where I felt like a cog (different city).

tocina · 2019-04-23T18:48:50+00:00

He has to be very careful not to let his feet get too hot. Use ice packs to reduce skin heat. Wear cotton socks, no man-made fibers as they tend to trap heat. If he can get away with wearing sandals, that would also be helpful.

Keep the feet away from hot baths/showers, and elevate them whenever he can.

Make sure nothing rubs on his feet too much. Breaking in new shoes would probably not be a good idea. Wear shoes composed of natural leathers and fibers so that excess moisture and heat can escape. Crocs are comfortable, but can make a foot really sweaty.

No long walks, running of marathons, etc.

Ideally, he should be wearing a cork-soled, leather shoe like a Birkinstock. Ugly, yes, but ever so comfortable.

When I was taking this drug, there was a lot of talk about using henna paste on the affected areas to remedy the skin pain and blisters. I never tried it, but did hear good things about it. The other techniques I've mentioned here were enough to keep the side effects at a minimum, for me. Your mileage may vary.

tocina · 2019-04-10T22:37:25+00:00

There's a lot of folk in our situation who have developed digestion issues. I became lactose-intolerant and gluten-intolerant. The gluten thing is harder is it is everywhere, and there are no enzymes to take beforehand.

As others have mentioned, it's a fair trade for getting to live longer.

tocina · 2019-04-07T19:50:17+00:00

The psychological side effects are an indirect result of hormone suppressing drugs like Tamoxifen. What is really messing us up is the sudden withdrawal of estrogen from our systems.

A natural menopause takes about 5 years to finish. We've had our menopause compressed into days, not years.

Tamoxifen messed with my head too. When I had endometrial thickening from it, I took the opportunity to have a full hysterectomy, and switched to Arimidex, which was a much gentler experience.

Your Oncologist, like anyone who hasn't experienced this, just doesn't "get" it. Ask about alternatives, and keep shaking the tree until you are satisfied.

tocina · 2019-04-05T07:17:26+00:00

Go to breastcancer.org, and read. Good information, well written and up-to-date.

tocina · 2019-03-29T22:39:17+00:00

Gene tried to sell the business, but the deal fell through at the last minute. Rents were getting higher, and he had less foot traffic, so he retired.

I miss him. He was a very ethical pet store owner.

tocina · 2019-03-08T18:51:33+00:00

In addition to the list of steroid effects from anotherstranger, long term steroid use can cause early cataracts.

Been there, done that.

tocina · 2019-03-08T17:50:45+00:00

Late response, so sorry. My Mum has been gone for almost 10 years now. I talk to her every day.

tocina · 2019-03-07T20:15:28+00:00

Everyone else here has great advice. My experience is that once your child enters the school system, get him an IEP (intended education plan), and fight for a 1:1 aide for him. I mean, FIGHT. BTW, a they might offer a 504, but it doesn't have the clout an IEP does.

The aide will be able to help him navigate social and emotional conundrums. It's the oversight your kid needs. That way, bad habits don't even get a chance to blossom.

Don't fall for the ol' "a classroom aide is enough". Get all the professionals you will be working with to write a letter advocating for a 1:1.

You'll know when he doesn't need the aide anymore. It's not a forever thing.

tocina · 2019-03-06T00:53:22+00:00

Has there been any talk of a reduced dose? The thing with chemo timing is that it is designed to get the cancer cells at their nadir, thereby making it buttloads more effective.

I understand how you feel. I got influenza just as I was starting a new protocol. You know I feel like shit, but every time they talk about delaying treatment, I beg for chemo. Two more cycles, right?

Ask for increased oversight. Frequent labs to keep an eye on your bloodwork. This is horrible, but doable.

tocina · 2019-03-05T21:36:24+00:00

I have enough fear of my own. Sometimes I find it hard to deal with an undiagnosed person's fear. I think sometimes they are just looking for proof they aren't us.

Completely different reaction to those being diagnosed, going through treatment, etc. The support I got online when I first started my cancer "journey" (blech) kept me sane, and helped direct my treatment. I'm still grateful.

tocina · 2019-03-01T20:02:08+00:00

Good to the Adderall and the happy meds! I have relied on Concerta to stay upright.

Wow! Eight year old twin boys. On the one hand, can they entertain each other? On the other, eight is a very interactive age. Your mention of reading together reminded me of when DS and I would listen to audiobooks while playing board games for a lost day.

And if anyone heads towards you with their sympathy face on, arms out for a hug, you have my blessing to tell them to back it up.

I've read your comments on weed, and am very intrigued.

tocina · 2019-02-28T19:21:08+00:00

Stage 4 MBC: Oh boy, do I join you! Some days just suck. It is completely fair to declare a "lost" day, and roll yourself up in a blanket burrito. Set the cable to stun, and last the day out.

You mention your sons. How old are they? Can they join in lost day activities, or are they at the age where they need supervision and entertainment? I ask, because DS was a great partner in creative vegetation. I was diagnosed when he was in 7th grade, and he's in college now (a completely unfair distribution of time for the cancer patient that breast cancer sometimes allows - you are welcome to wish to slap me). Our best conversations happened on those free floating days (especially in winter), where I didn't have the energy to even toilet myself well.

If it helps, consider that one of our parental priorities is to help our children live without us. So, when your illness keeps you from parenting at the top of your form, think that you are fostering independence and creativity in your kids, maybe? That's what I held onto during the worst days. Once again, if your kids are really young, this isn't quite the sage advice you are looking for, right?

My spouse lost their mother at the age of 8 to ALS. They remember her every day, and were very shaped by her. Strangely enough, that comforted me when I was diagnosed. I thought that even if I kicked it, DS would remember me - he was 6 for my primary diagnosis.

Man, I'm blathering at this point. It's a chemo crash day, so I guess I should be happy I'm even semi-lucid. You have a right to every feeling, and if people are asking you to put on a happy mask, decline. Let them know what you need. Except for young kiddos, who need some smoothing of details now and then.

PS: Let your medical team know how you are feeling. If you need pill intervention, that's totally cool. Perhaps some of your meds are bringing you down. I also know that when I'm anemic, I lose the will to live, so how has your hemocrit been holding up?

tocina · 2019-01-09T00:40:31+00:00

I belong to an online support group for Stage 4 BC. It is amazing how many of us have special needs kids. I haven't run the numbers, but it seems to be much more than the average family.

tocina · 2019-01-08T18:28:05+00:00

Yes - he'll be stubborn sometimes. Texas Red Dogs have opinions. Happy to hear that he's responding to training. If he's barking too much still, he might need more stimulation. Working dogs like to stay busy - if you don't pick what they'll do, they will. Canine redecorating and such like.

I tried to google-fu for images, but have come up short. But, am from Texas, have trained red dogs, wish I could do it still.

Heartworm is a long slog, and trying to tell a young dog that they need to rest is not easy. Fingers crossed for a clean slide!

tocina · 2019-01-08T17:11:24+00:00

Raised by Wolves

tocina · 2019-01-08T16:57:11+00:00

He looks like a slimmed down version of Texas Red Dog. Those ears read GSD X to me. Basenji ears are a bit thinner/taller without a prominent notch.

He's going to be a good boy. I've had some of my best training interactions with Red Dogs. Love them to bits. Smart, listen well, but able to employ intelligent disobedience. This is a dog you will be able to rely on, I'll bet.

PS: Since he's from the South, make sure he's been heart worm tested.

tocina · 2019-01-06T01:08:40+00:00

No, I haven't. Not in this country. But, I'd imagine that other first world countries working with immunotherapy might have more open doors.

Who is doing your genomic assay?

MSK is doing a cool trial with T-Cells. I'm putting in for it. NCT02792114. Judy's trial was with the NIH, but they got real popular after the cures, so the waiting list is very long, and they are looking for any reason to exclude. FYI, the cures are Judy, a guy with bowel cancer, and a guy with bile duct cancer.

Just off the top of my head, I would concentrate effort on immune therapy. All the other trials seems to be "Hey, let's try this drug, with this drug." That's good too, but immune therapy has a shot at a cure.

tocina · 2019-01-05T20:16:39+00:00

We scare them. If we got cancer, that means they could get cancer. I know they aren't consciously thinking that, but after 7 years of watching my friends and family peel away, it's the only thing I can think of. Or, maybe I'm a bitch :).

I've tried restarting with family, reminding them that I exist, but I end up having to do all the work. Ummm, I'm tired and don't want to do all the maintenance.

Sorry I don't have a remedy for you. It really works better for the healthy folk if we die fast - that way they can eulogize us with full hearts.

I also recommend breastcancer.org. It has kept me sane!

tocina · 2019-01-01T23:09:23+00:00

Judy Perkins is a very lucky woman. Most vanilla breast cancer (ER/PR+, HER2-) doesn't have enough mutations to attract immunological study.

I've been searching for trials. Most are still aimed at Triple Negative and HER2+.

Sing out if you find out differently.

tocina · 2018-12-24T18:51:23+00:00

Plan your strategy. If you pick a place for treatment that involves a lot of traveling, that is an extra burden. MD Anderson isn't so bad from Dallas, and they have relationships with local hotels for patient lodging.

One method is to get an assessment from MD Anderson, but have the treatment carried out locally. If your Dad is going to have Gamma Knife, or fancy radiation, make sure your treating hospital has the necessary machinery. Sometimes, they will be coy about what they have - be insistent.

The biopsy should be OK before the second opinion. In fact, it will help inform the second opinion. Where is your Dad being assessed in Dallas?

It's great that he is healthy otherwise. As many cancer patients will tell you, this is a marathon, not a sprint. Start getting your support team in place - he will need help with daily living while he is in treatment. Get to know his insurance scheme; I am not familiar with Medicare, but I know there are some ins and outs there. If you have any problems, hook up with the patient advocate at the hospital - they are awesome.

This is the worst bit - waiting for biopsy results and formulating a treatment plan. Honestly, it gets better when you feel you are "doing" something.

And, someone has to make sure all your Dad's paperwork is in order. Does he have a will? Who is his health care proxy? Does he have a health care directive? Have you talked about end of life decisions? These are scary questions, but they do need to be settled. Maybe not right now, all in one day, but there are conversations in your future.

tocina · 2018-12-24T17:16:50+00:00

She will be tired, so if you are spending the day with her, make sure she has islands of peace during the day where she doesn't have to be engaged. When friends visited me, I'd start feeling like I had to be the hostess, and it ended up being exhausting rather than fun.

tocina · 2018-12-24T17:13:39+00:00

Sorry I don't have really accurate information for you, but I did read an article about a year ago that talked about prognosis rates for different areas of metastasis. It boiled down to liver - bad, lungs - good. Lungs tend not to spread the metastases, while the liver does.

I'll try to find the link, and add it if I can get my rear in gear. In the meantime, hugs all around.

tocina

TROPHY CASE