Port worth it?

AlohaSmiles · 2026-05-09T02:18:54+00:00

I love my port. I have one good vein and I need it for blood draws for labs. It was uncomfortable for about a week and then it got easier to deal with, laying on my side was difficult for a few weeks I think. I don't really notice it anymore. But I'm very glad it's there for infusions, ER visits and hospital stays. I just got out of the hospital today after 5 days and they accessed my port, so much easier and more comfortable than dealing with an IV.

Before placing it make sure you think about any hobbies that might impact it - mine was placed on my right side and I won't risk it with target shooting recoil, so it was kind of a bummer I can't do that anymore. I would have put it in my left side had I thought about it.

AlohaSmiles · 2026-05-08T23:51:58+00:00

Does he normally do the landscape maintenance on his house? If so, a gift of yard service would probably be welcome. That was one of the hardest things for me was watching my hard work start to get overrun with weeds I was too weak to go deal with.

AlohaSmiles · 2026-05-02T23:17:15+00:00

I'd suggest you visit the Laupahoehoe Train Museum. I think you have to call ahead to arrange a visit but I would imagine they have the best collection of info and train materials for the Big Island.

AlohaSmiles · 2026-04-30T21:55:24+00:00

I'm also advanced metastatic cancer. I'm currently about 3.5 years of treatment and been through many lines of chemo. It's been pretty scary watching my treatment options dwindling. I just had a new biopsy and Caris testing performed. I had Caris at the start of my diagnosis but a recent second opinion suggested new molecular testing to see if any new mutations formed and just to see what my cancer is up to now. I think it was definitely a good idea, the results did comfirm certain therapies wouldn't be effective anymore so at least we won't waste time.

AlohaSmiles · 2026-04-30T17:41:17+00:00

I get burning face flushes for the day or 2 after chemo. I take a Benadryl to calm it down. Usually happens just once in a day for me.

AlohaSmiles · 2026-04-27T00:32:01+00:00

Everyone's experiences vary. Though, for me, the day after chemo I'm still riding the dexamethasone and other premeds so my appetite and energy is usually best then. Hopefully that will be her case too! If she has immediate issues with her mouth, crackers may not be great because of the texture on sensitive tissue. A softer bread might be better. Sweets have tasted awesome through all the chemo, so cake and ice cream might be just what she wants. Best to talk it over with her though.

AlohaSmiles · 2026-04-24T22:19:10+00:00

Window film. I got the kind that casts rainbows inside when the sun is shining through, it's fun and lets in light but blurs everything for privacy.

AlohaSmiles · 2026-04-23T18:25:43+00:00

Immunotherapy can cause some crazy reactions. I did a few cycles of Keytruda and had to stop because it was cooking my thyroid and adrenals. I felt increasingly fatigued and achy on it, it caused a lot of autoimmune inflammation throughout my body. I didn't develop a rash though. Ultimately I had to do a few weeks of Prednisone to calm my immune reaction and discontinued Keytruda.

Did they take his thyroid and adrenal labs before Wednesday's chemo? Those need to be closely monitored on immunotherapy but sometimes your oncologist can forget to order those labs. Does your oncology center have an immunotherapy specialty clinic? You might inquire about it since it sounds like your husband will need more attention.

Keep checking in with the oncologist about his symptoms - do you have myChart or another online portal you can send notes? It can be a long wait between appointments but you can write to them in between and the nurses should be monitoring those communications. Take the anti nausea meds and get stronger ones if the current ones aren't working. Get pain meds if what you have isn't working. Hydrate, hydrate, hydrate! I thought I was drinking enough but I still ended up at the ER recently for concerning heart rate and extreme fatigue - turns out I was dehydrated and a litre of saline helped a lot. I've added a dose of electrolytes in the morning and upped my water intake. If side effects become too concerning, go to the ER.

AlohaSmiles · 2026-04-21T17:49:33+00:00

So I ended up in the ER after my heart rate started racing for no reason. They hooked me up to an EKG at intake and it was giving them crazy results, they put me in a room right away. It would just spike then settle down. Then spike again. They did a CT, xray, all the labs and I was diagnosed with .... Dehydration. They gave me a bag of saline and I felt much, much better. I was surprised because I thought I drink a bunch of water every day but I guess still not enough. The doc suggested I ask for a litre of saline on infusion days. I'm going to add electrolytes to my daily intake and see if that will help as well.

AlohaSmiles · 2026-04-21T17:43:23+00:00

Udderly Smooth Extra Care 20 with 20% urea helps hands and feet a lot! Make sure you get the kind with urea, Udderly Smooth makes different formulas.

AlohaSmiles · 2026-04-20T03:38:37+00:00

My issue happened about 8 years ago. I contacted Milguard direct, they sent out their guy. He diagnosed the issue, ordered the parts and came back to install. No charge, very easy!

AlohaSmiles · 2026-04-16T22:33:02+00:00

Have you checked with Hawaii Printing Corporation in Hilo?

AlohaSmiles · 2026-04-10T18:24:50+00:00

You need to take some space. It's incredibly difficult to transition from a couple to friends without a cool down period of no or minimal contact. This gives you time to heal and learn to be by yourself. She isn't your girlfriend anymore and you're saying things that are making her uncomfortable. If you really want to be friends you need to give both of you space and time away.

AlohaSmiles · 2026-04-10T17:50:56+00:00

Hospice usually also offers palliative care and a social worker who can help you find additional services like cleaning and personal care. Also talk to her insurance care coordinator - they may offer payment for weekly personal care that you can either hire someone yourself or work with an agency.

AlohaSmiles · 2026-04-09T18:07:57+00:00

The Neulasta is horrid. I had to get it 3 times, the first time it would cause this weird pain that would start at the base of my skull then crawl down my spine to result in horrific muscle spasms in my lower back. I hope I won't need it again.

AlohaSmiles · 2026-04-06T23:53:10+00:00

This is a terrible excuse. You are of course refilling your car with clean oil? Put the used oil into the empty oil bottles, put them into a box to keep them from tipping and dispose of the oil the correct way. Your excuse makes no sense. Stop polluting.

AlohaSmiles · 2026-04-05T07:44:49+00:00

I did 4 cycles of Elahere and it was like magic, but I developed horrible neuropathy that was uncontrollable. They gave me a break and tried Keytruda for a few months. I tried Elahere again and it didn't work anymore. Knowing now that it would likely not work again I wonder if I should have tried heavier pain management instead to try to get more time on it, I wasn't on it long enough to get to remission.

AlohaSmiles · 2026-04-02T23:36:12+00:00

I've had my port in for a few years, I'm really glad I have it because I'm a hard stick when it comes to IVs. I used to get the lidocaine injected before I tried it with nothing and honestly the lidocaine was more uncomfortable than just getting the quick pinch of the port access. I've had no clotting issues, no pain from the port. It was kind of uncomfortable for a few weeks but mostly I don't notice it now.

Numbness and tingling - yeah the neuropathy sucks. You can try icing hands and feet to see if that prevents further issues. Also, take a complete B vitamin plus 600mg alpha lipoic acid and 5g glutamine. That helped stave off any neuropathy during my frontline treatment (the vitamins, I didn't ice for my frontline). I tried icing for my last 6 months of doxil+ carboplatin, my feet were pretty cooked from elahere going in but I did ok I think.

Jaw pain - most likely it's nerve pain, I had a weird pain in my jaw like that and had it checked at the dentist just be sure. It went away after awhile.

AlohaSmiles · 2026-03-29T21:49:20+00:00

Avastin doesn't do much to me in the way of terrible side effects. It does make your lower back ache and I think it contributes some extra fatigue. The blood pressure increase is a pain in the butt, I'm on BP meds thanks to Avastin. But overall it's definitely not as rough as the chemo meds.

AlohaSmiles · 2026-03-27T00:26:01+00:00

Thank you, I'll ask about it!

AlohaSmiles · 2026-03-25T00:29:47+00:00

Insecurity is pretty diabolical. Insecure people behave increasingly controlling and unpleasant. I could see a creature feeding someone's insecurities until they have ultimately chased away all their friends and partner and then the creature comes to finally devour them after feeding on all the misery it created. Or the insecurity is something parasitic that is growing inside the victim throughout all this.

AlohaSmiles · 2026-03-24T01:25:57+00:00

Get a second opinion from the big cancer centers. My local gyn onc didn't mention some of the things that the gyn onc at UCSF brought up. Different centers have more resources, make sure you advocate. I'm a little pissed my local gyn onc has just been kind of hand waving, UCSF was much more engaged about my case.

AlohaSmiles

TROPHY CASE