Getting on with Life as well as I can

[PennyK]

After a very nice but short visit from my sister and mother, my older daughter came to stay for two months -- she is a nomad for now, and has no permanent home. It's been a lot of fun...this is the most time I've spent with her since before college, and she's 31 now.
We colored each other's hair; it was great getting rid of my "new" gray.
And we've been cooking up a storm! Daniele recently added fish back to her long-term vegetarian diet, so we've had mahi-mahi, salmon, and shrimp.
We are in the depths of a Downton Abbey marathon, and I'm also sewing her some custom clothes. I'm really going to miss her after this visit, but she has California next and then Paris with her boyfriend. This young lady knows how to live!
Meanwhile, I have three more Herceptin treatments, and then on to reconstruction surgery. I am going to ask my oncologist if I can start seeing my chiropractor again -- I just want to be careful because of the blood clot near my port -- but it might really help with the hip pain that he says is osteoarthritis. If I can get past that, I can start exercising again, or at least walking more than I can now.

[YvonneCa]

1. Hang in there...

...PennyK. Daughters are wonderful, aren't they? 😀 I have two who are amazing!

[Freedomofspeech]

2. All the best...

Enjoy your daughter and I hope you have a good recovery.

[Bayard]

3. Your positive outlook

Can work wonders! Good thoughts to you.

[Solly Mack]

4. Keep being positive! Sounds like you are having a wonderful time with family.

Sending you my best!

[Laffy Kat]

5. You're more active than I am!

And I'm not recovering from ca. Aren't adult children fun?

[Useless in FL]

6. Be well...

Positive and healing thoughts coming your way....

[dixiegrrrrl]

7. Hey...trade you information....

Tell me what I should know about blood clots and ports........I know nothing

and here is info on new breast cancer drug, dunno if you saw it.
I have no idea of what they mean by "forms of some types of cancer"
except it is for HR+/HER2- types.
am I right in thinking this is applicable for you???

and like you, I have hip pain...I have several kinds of pain, supposed to be side affects of Femara......
all I know is anti-inflammatory meds work well, but the ones that work REALLY well have all these nasty warnings...

Ha...forgot the link...Femara does that to the memory, darn it.

https://apnews.com/28568fc58d784fea8d750248380d4cd9/FDA-OKs-new-Novartis-drug-for-type-of-advanced-breast-cancer

[PennyK]

8. Hey there!

You are correct, mine was HER-2 positive. I'm at the end of treatment now, though.
I read that about 15% of port "installations" cause blood clots. They put me on a blood thinner. Right now, I don't know whether it caused any side effects...maybe my runny nose and mild nosebleeds? I do have a new bright blue vein running horizontally, on the lower part of my breast (on the port side, where I still have a breast). My surgeon said that is the body finding its path for blood flow.

I now have just two Herceptins left! I got an OK to go back to my chiropractor, and I have a very good feeling that that's going to help with my hip pain. I also plan to look into physical therapy; I'm going to have a hip MRI first.
I can make an appointment to have the port removed one month after the last infusion, and my doctor agreed that I can stop the blood thinner at that point. I still don't have a clear understanding of how the blood clot just goes away, but of course I'll try to get that clarified. Then reconstruction -- can't wait for that. I have a very bizarre-looking area, with extra skin left there for that purpose. It's gross.

So, some very good progress for me. It looks like this might all be finished by the close of the year. I've also gotten my diet under control (damn, but I went a little crazy when my taste buds came back), and my daughter's been such a good influence on me...tons of fresh veggies and wild-caught seafood. I'd like to be at my "happy weight" for reconstruction...about five pounds to go.

Daughter leaves next Monday and this house is going to be SO quiet after having a lively young person here to cook, sew, argue, laugh, discuss with.

[dixiegrrrrl]

9. ty for the info and esp for the good news about your progress!!

Making mental note to myself to look for any weird things around my port.
I have to leave it in even tho I did not have chemo, cause the veins in my arm are blown now, after so many lab draws since July, and not supposed to use the masectomy side arm ( taht sounded funny, no?) because to lymphedema prevention.
Happy, I do take 2 aspirin in am for aches and pains, so that will help with blood thinning.

thank for teh info, and again, so pleased you are doing so well!

[PennyK]

10. Just another tip

The way we found the blood clot was roundabout:
I burned my hand while cooking, and so my husband started looking at my arm every day to make sure it was healing. He thought my arm looked swollen...so we went to the oncologist. Dr. thought it was healing fine, but Nurse Becky looked at it and then looked at her online info. She sent me to the hospital for a scan (sorry, don't recall which kind) of my chest, and THAT'S how they found it.
So all just from noticing that my arm looked funny. Eric can be annoying about medical issues, but this time he and the nurse took the time and really get the credit.

[dixiegrrrrl]

11. That is actually helpful....

I have to eyeball myself re: the lympedema, and my left side extremities are slightly puffier than my right side extremities.
Had not thought to think in terms of blood clots..
always good to file stuff like that away.
Thanks again.

[PennyK]

12. Feels like it never stops

My toenails still look like hell. My hair is so fine and skimpy -- and still so short! I'm convinced the Herceptin is slowing it down. I get fluid buildup in my mastectomy area, and so far, I've had it drained twice. I'll be going in to get it done again next week.
I've been lucky regarding lymphedema. I do have an area on my back that sometimes tingles or itches or feels numb...I don't know what's up with that at all.

[dixiegrrrrl]

13. Well, since we are chatting....

re: mastectomy....
So, they cut nerves, right? and the nerves have to hopefully re-grow, in some fashion, but for a long time there is numbness in areas, then various forms of feeling, including some stabbing, firing up, aching, etc nerve pain.
When I had shingles, it was a massive attack from mid-line front, around the side, almost mid-line in the back, and when the worse was over, I had post-shingle neuropathy, most unpleasant.
turns out, a small dose of an old anti-depressant, Elavil, has been used "off label" for ages for...nerve pain.
It works great.
So, have been taking it for a couple years ( helps with sleep, too) and then it turns out that it helps with the nerve firings from the mastectomy. Happy damn extra surprise.
Best part...costs $10.00 for 90 day supply.

We should all be so lucky to have the solutions that easy, eh?

[PennyK]

14. Thanks!

That just might do the trick.

[Ms. Toad]

18. From personal experience wtih both,

the feelings and appearance are very similar - and one of the consequences of DVT is mild fluid buildup (since part of the job of blood returning to the heart is fluid removal).

I had a devil of a time sorting the two out when the lymph node biopsy gave me mild lymphedema for a while.

[dixiegrrrrl]

19. Interesting I found your reply as I returned from the doc appt.

He is gonna order ultrasound of both legs, not just the "puffy" one re: edema and redness.
and was telling me that wearing support hose plus a support sleeve for the puffy arm will do wonders.
Can hardly wait.
I stay home 99% of the time, by choice, so don't mind the hose/arm get up.
thank god Medicare covers all this....

[Ms. Toad]

20. My mom had to wear the sleeve for a while

Thanks goodness hers was short-lived - so she no loger has to wear it.

Good luck wtih the DVT. I am eternally grateful mine isn't in my legs.

[Ms. Toad]

17. I don't know about port clots -

but I've lived with DVT at the Thoracic Outlet for years (VTOS).

My "clot" will never vanish - but it's not really a clot any longer; Some of it resorbed leaving a mass of fibrous tissue. There's now a tunnel through it - and off and on it blocks off again. But (like you) I developed collateral circulation so the blood found its way back to the heart. I have big fat veins all up my left arm & across the surface of my chest - and always will have. (When it happened on the opposite side 2 decades later, they knew how to remove a rib to fix the problem - so I'm missing a rib on the right side.)

DVT in the legs is often a lifetime "sentence" with blood thinners. For VTOS it is a shorter period because it a structural birth defect caused it and it is not likely to recur in random other places. Once the danger of the clot breaking off and moving to my lungs passed, I was able to stop taking blood thinners. Because yours is structural (caused by the port) I'd guess shorter rather than longer on blood thinners for you.

Best of luck!

[PennyK]

15. Just an update

I have a hip MRI and an echocardiogram scheduled. Made an appointment with my chiropractor. See the surgeon next week where I can make an appointment to get rid of the freakin' port. I'll find out when to start talking to the plastic surgeon for reconstruction!

I'm going to attempt to make red beans and rice today for my husband, who's been asking me to try doing it for ages. Me, I seem to be uninterested in food these days, which is quite unusual for me...must be some sort of side effect from Herceptin. I'm just eating to keep up my strength at this point, but since I needed to lose a few pounds, it's fine.

We finished Downton Abbey last night and there wasn't a dry eye in the house. I think we'll watch Gosford Park, Julian Fellowes' movie that gave them basically the idea for doing Downton next -- Maggie Smith's also in that, and I think it's a country manor weekend murder mystery.

Two more days with my daughter...boy, I'm going to miss her!

[PennyK]

16. Small step backward

Saw my surgeon today and he says that the swelling in my post-surgical area is a hematoma that may have been caused by bruising or exercise. I think it's because of my blood thinner, as my nose has been leaking a little blood for a few days. I have to wear the Ace around my chest for a frikkin' week again, then go back in two weeks.
He said it shouldn't slow the remainder of my recovery down otherwise, though.

I admit I did try Downward Dog for a minute with my daughter...I'll be more careful now with stretching and reaching up high. Darling, could you put these dishes away?

[dixiegrrrrl]

21. I want to thank you for sharing all this info.

Sorry you are having difficulties, but sharing them is very helpful to me and I would assume others who are going thru this journey.

[PennyK]

22. And how's this for nuts?

I've had pain in one hip joint since last fall. According to tests it's osteoarthritis.
Well, it has eased up over the last few days. I have no idea why.
My only thought is that it was a late symptom from chemo (started three months after the chemo ended). just crazy. But now, I might be able to finally walk a little bit more than one block without pain!
I have my first chiropractic adjustment tomorrow and I'm sure it'll help a lot with residual soreness. Yay!

[PennyK]

23. Buh-bye, Ace bandage!

I'm FREE!
The blood thinner is really a problem these days. I "scratched my finger on the cat" last night and I had to keep a bandaid on tight to stop the bleeding. The tiny incision on my chest, likewise, has not formed a scab, so after my shower I have to remove the old one and slap on a new one ASAP.
Feeling fine otherwise. I'm very happy to be back with the chiropractor, and I'm doing the rudimentary exercises they gave me.
Next Monday I have my next-to-last Herceptin. My surgeon said he wants it "in writing" as to when I can get the port removed and go off the Xarelto.
I'm counting three weeks after the final Herceptin as the day when I officially start recovery from Chemo. That's 47 days. My hair and nails are still a joke...they're like placeholders for the real things.

[PennyK]

24. A few setbacks...

I had a hip MRI, and it looks like there may be something there. I'm going to have a biopsy in the area. Oy. It sounds complicated.

My mastectomy zone has been bleeding on and off, most likely because I'm on blood thinner. I see my surgeon about it tomorrow. I'm cutting back on physical activity until then, just to be on the safe side.

My next-to-last Herceptin was postponed until I have another MUGA (heart function test). That's today. I should get cleared for the infusion and that has been rescheduled for Friday...and the final one is still set for 4/24. Oncologist said I can get off blood thinner and have the port out soon after.

Poor Hubber is a wreck. I really feel bad for the guy.

[PennyK]

25. Ouch!

Saw my surgeon on Wednesday. He started pressing out stuff (watery blood) from my chest, and he used some local anesthesia. I was told to wear the Ace for a week.
I felt fine next day, but I woke up Friday in extreme pain! Went for my Herceptin, but...my whole left side of my upper body hurts like hell. I'm taking Tylenol and oxy, but man! This might be the most painful thing I've ever experienced. I'll call at 9 tomorrow and ask why the hell he didn't even give me a heads-up on this.
It's basically like a giant bruise. Frustrating in that I'm having trouble taking a deep breath.

[shenmue]

26. Hugs

[Squinch]

27. Best to you, PennyK.

[PennyK]

28. Thanks

I'm thinking maybe I could go in and he could give me a local, like he did for the procedure. It lasted for two days.
And when I say it's the worst pain, I'm including shingles and natural childbirth.
I'm going to try to sleep tonight sitting up; that might help with the peripheral areas. I even made my poor husband switch sides of the bed temporarily! And I have no appetite -- that is major for me -- I love food.

[PennyK]

29. Small progress

Doctor has NO IDEA why the area hurts! To me, it's obvious -- it just refilled with whatever watery blood and myuk.
He'll see me tomorrow morning.
I did sleep sitting up, and it did help a bit; I'd say my pain today is only a 7 -- progress.
Poor Hubby is learning to use the new washer and dryer! So cute.

[PennyK]

30. So, after research on the Intertoobz

I think it might be Truncal lymphedema. The area is filling up with fluid, and stretching the thin skin over the surgery area to its breaking point...I actually have stretch marks and small areas where blood is coming out.
Draining it will give me temporary relief, but then when it comes back, it will be awful!
Hoping my doctor can figure this out, because I'm getting the feeling that I might turn into the Stay Puft Marshmallow Woman.

[PennyK]

31. Duh LOL

The area got infected. I admit my house is not exactly a sterile environment, but for it to have happened so fast seems crazy to me. Dr. P cleaned it out and then performed an "episiotomy" on the area, enlarging the wound so that it can drain better. I am encouraged to press around it to help. and I'm going to get a home health aid (visiting nurse, really) to help with bandaging. And I'm on antibiotics.
I feel better already. I was at the point of despair while waiting to see my doctor, and crying a little bit. Can't believe it was something this simple.

[PennyK]

32. No home health aid, thanks to hubby

Last edited Wed Apr 12, 2017, 10:45 AM - Edit history (1)

He told the doctor that I had been doing yoga (it was gentle yoga, and it was weeks ago). Doctor wrote it down, and apparently that made me too "spry" for home health care. I get it, but jeez.
Okay, I'll get explicit directions today; I think I have everything I need to keep it clean.
Feeling much better...still very sore, but it feels like I'm going to be okay.

Edited: I'm a big girl now, I dressed my wound. It looks for all the world like a bullet hole. It may be THE grossest thing I have ever seen. I used the sterile saline spray several times while in the shower, and some blood came out. I held on a gauze pad while getting dry and then redressed the whole wound with two large pads and a roll of gauze bandage.Then the Ace.
The area is still painful but let's say a 5 or 6...hoping to control it with just Tylenol today.

[PennyK]

33. Well, not so good

The skin in this area is so compromised, thanks to radiation, that it may not be capable of regrowing on its own. My doctor is now sending me to a wound care center he also works at, where there will be specialized options for dealing with it. He talked about possible biologic treatments. That's next Monday. Meanwhile, I'm staying home, since it's basically an open wound and I just don't feel like going out is a great idea.
At least I got my appetite back. Decided treating myself to a few yummies was a deserved indulgence. And I'm still sewing. And watching Rachel every night is my favorite!
Boy, this cancer treatment is one insane thing after another. I still have the end of chemo, getting my port out, and quitting the blood thinner to look forward to...oh, and I told the hospital to forget about a biopsy on my hip -- it doesn't hurt any more.

[PennyK]

34. Hmmm, I may be okay

When the area got infected, the skin stretched out a lot, to the point where it was shiny in one area (like stretch marks). It makes sense that it would have gotten thin.
When I cleaned it this morning, it looked better. I started taking my vitamins after a few days off, I'm eating more, I can breathe better (I was so sore I couldn't even take a full breath), and I think maybe my skin will remember what to do.

I'm pretty sure my body still remembers how to do SOME things...you should have seen the proliferation of chin hair I had to deal with this morning LOL!

[PennyK]

35. What a bummer!

I should be partying my ass off. Final Herceptin 4/24, my hip pain magically went away...but no, now I have this gaping chest wound. Tomorrow I go to the Wound Clinic and I guess my doctor will decide how to treat it. It's less painful now, but incredibly icky to look at when I clean and dress it twice a day.
Hoping this won't slow down removal of my port, which can happen after that final infusion.

[PennyK]

36. Hyperbaric Oxygen Therapy

I'm going to have it on my wound. Orientation tomorrow. I hope it's not horrible. Read up a bit on it...maybe I can just try to nap...and they said you can watch a movie. Too bad reading isn't permitted. And no more wound dressing myself, they will do it (except on weekends).

Please let this be my last side effect!!!!

[PennyK]

37. I realized something today

Last edited Wed Apr 19, 2017, 08:45 AM - Edit history (1)

Along with the pain from my wound, my arm has been feeling funny for days. I finally figured it out! It's from wearing this Ace bandage around my chest for three weeks...it's pinching a nerve! I'm going to insist on seeing the doctor tomorrow and getting some other type of wrap/bandage. The other arm just started to hurt, too.

I called this AM and said I HAVE to see the doctor today regarding this. Removed the Ace this morning, added an extra gauze pad with tape and that's that. I realize my doctor is not thinking about my situation 24/7 like I am, and I'll *try* not to hold it against him that he didn't realize the Ace could be a problem. It was abrading the radiated skin under my arm, too. Geez.

[Ms. Toad]

38. Catching up on folks here. Sounds like you've been through the mill!

Hoping things get better for you soon!

[PennyK]

39. Thanks!

Yeah, I'm so close to the end of treatment and this had to happen. I still have my final Herceptin next Monday, and then, as soon as my surgeon feels I'm good, the port comes OUT and I can get off the blood thinner. I just need to get this wound healed, though, before we can get into reconstruction.

I still can't believe how one things blooms into another. I wore the Ace because of a hematoma, and now my arm is all inflamed. Had to start using the My Girls cream again, because the skin got all irritated from the Ace.

Looking forward these days to a visit from my sister next month. I haven't really spent time with her in two years, and she is my best friend.

[PennyK]

40. Orientation for oxygen treatment today

I had read that you can't bring in your eyeglasses, but the doctor said it would be OK (you can watch movies in there). However, NO lotions, skin cream or makeup of any kind. So, no wrinkle cream or eyebrow makeup...I will just pray no one sees me coming or going.
Today I'll also get a lesson in treating my wound over the weekend by myself, and hopefully they'll give me the supplies.
Feeling so much better, both the wound and the arm...I think I can even cut back on pain meds today (OTC). Finding a comfy sleep position is still awkward, however.

[PennyK]

41. Final Chemo tomorrow!!!!!!

This will be the last of my Year of Herceptin.
Finally. I'll be able to get my port out and get off blood thinner.
Then I have to have the oxygen treatment for this chest wound, get all healed up, and hopefully, I can finally get reconstruction.
You really have no idea when you are diagnosed of what you're in for. When I think about all the side effects and mishaps over the past 13 months, it's pretty frightening. At the same time, I'm fairly impressed with how I've dealt with it. I know the medical profession is pretty proud of what a long way they've come in cancer treatment, but man! It is so fraught with danger. I'm fairly sure I am still quite anemic, as I seem to get weak often during the day (treating myself with protein and fat, no carbs until dinner, since they make me crash).
We are getting pizza tomorrow night to celebrate, and I expect it to taste fabulous!