August 2013 Surgeries

So sorry this happened Lisa. It really does seem endless and I am surprised anyone can carry on and go to work with all of this going on. I feel so lucky to be retired. I hope things go smoothly from now on although I don't actually trust that thought any more. Fooled too many times. eesh.

MY PT is a cert LE specialist. Ive gone 3 times. The first time she measured me all over the arms for the LE tracking and talked about ways to avoid it. She didnt seem concerned about tracking me closely, and on the other visits didnt do measurements. I dont know if it is because I didnt seem to have LE problem the first visit? She did find minor cording in one area and helped me with that. By the 3d visit that was gone. She did talk specifically about getting sleeves if I am going to fly. I said maybe next fall- so she recommends waiting til about a month or two before, as weight gain/loss of up to 10 lb would make a sleeve I get now inappropriate. Its the one thing she seemed to be very specific about. Also mentioned avoiding very/overly heavy lifting (think 40 lb bags of dirt in the garden).

Otherwise the visits were for range of motion, which she measured my abilities each time, and did massage, gave me excercises to do and showed my scar massage. From the 2d to the 3d visit she said there was a big difference.

I know, KBeee. It was the smart thing to do and it was the advice of the medical professionals so I went. But can you imagine how stupid I feel looking at my ER discharge papers and it says, the reason for visit....here it comes....."swollen arm". Now that might put it in a little more context for everyone to understand why I feel like an idiot (told that same thing to my daughter and when she heard it, she said "ok, I get where you're coming from now".) Oh well, I did what I was told to and everything is fine so that's what's most important.

My family doc believes it is Lymphedema in the right arm - this crap never ends, does it! I go to PT on 10/31 and will see what's up. I also have my Genetics Counseling set up for 11/14. All these appointments are driving me crazy and I still need to fit in my expansions w/PT!!!

I don't remember is I mentioned last week my doctor also believes I'm suffering from Post Mastectomy Pain Syndrome. I had read about that and wondered if it might apply to me back when I had that tight tape like feeling in the breast area. But when the tubes were taken out and all that pain/discomfort resolved, I didn't give that Syndrome a second thought.

I have had an electrical sensation going down the left inside arm right after BMX. BS thought seroma was laying on a nerve but the seroma is resolved and the pain has gotten MUCH worse since returning to work and now goes all the way down into the hand. I was just letting it go and figured the next time I see my family doctor we'd chat about it (BS checked it out last Wed before surgery and was at a loss as to why it was happening). Well, on Thurs when I was able to start using my right arm....the same electrical type pain was going down the inside of that arm. Great! Just Great! So I called my doc and we talked about it and I asked if she could do some research to find out if this was nerve damage from node removals or what (because that's what made sense to me). Well, she got back to me about the Syndrome (they have a flippin syndrome for everything!) and so I started on Lyrica last week to see if that will help. I need to get it built up to a decent dosage; I've had problems w/this med before (and every anti-convulsant I've tried for headaches) in it making me very, very tired. But, if it helps my arms then I'll just have to get used to be tired!

Anyone else have that electrical type feeling go down their arms after surgery?

Sorry to see we lost some ladies in our little group. I know there are other threads we all join in but I had hoped we'd all stay together and follow one another thru this journey - perhaps that was naïve of me...... Oh well, we still have a good, strong and tight group; and I know it's harder to post as much as we had as we are all returning to work and our "regular" lives, but it would have been nice if everyone had stayed on board here.

KBeee - I'm so glad you continue to tolerate your chemo so well! I hope to be the same (although I'll not hold my breath - but I can hope)!

Hope everyone is doing well. Have a wonderful Autumn evening!

As always, my thoughts and prayers are with you all!

Not sure if this is the place to post this but I read this today and it makes sense:

In Defence of Sadness



Those who have cancer are expected to be positive. Positive thinking has become the standard, and those who do not, or cannot, think positive thoughts often feel guilty for not measuring up.



But a diagnosis of cancer is a sad event. The disease brings loss, even for those who are cured. People who have cancer lose parts of the body. The cancer or its treatment may make them ill. They lose not only thier health, but also a sense of well-being and security about the future. Some even find that former friends disappear, unable themselves to face the losses.



Those who pretend to others and to themselves that everything is fine do so at a cost. False cheerfulness takes energy, at a time when they may have little to spare. Emotional dishonesty keeps others at a distance.



We live in a culture that does not acknowledge sadness as part of life, that considers it evidence of weakness or moral failing. Sadness is unwelcome, a social barrier that makes others uncomfortable. When people with cancer pretend to be cheerful they may make it easier on their family and friends, and health professionals, by not requiring them to face their own grief.



Sadness is not depression. Major depression can take the form of despair, a bleak outlook that colours everything. It can be obsessive rumination, paralyzing guilt, or an inability to face the day and accomplish what needs to be done. Depression is a legitimate disorder that deserves to be treated.



But Sadness is part of living. We are sad because life does not match our dreams, because we lose what we love and we lose what we need, because others let us down. Because our own bodies let us down.



People with cancer usually try to return to the person they once were, but most will be changed in some way. Those who allow themselves to be sad can recognize the losses and grieve for them. When they can admit that the old life and the old self are gone and find the strength to let them go they can create a new self to respond to the new situation. Some gain a new perspective. They may see life differently than they saw it before.



Those who want to be supportive of someone with cancer can do so by allowing them to be real, to feel what they feel. Those with cancer need someone to cry with, someone who is comfortable with the sadness. When they can count the losses they can grieve for what is gone and can move on to the next chapter of their lives.





by: Karen Ritchie M.D.

Wrenn - Excellent Post!!

Lisa. I can't even express how much this forum has helped me and you are a big part of that. I would never have even considered reading that sadness article let alone pass it on. It would have felt like wallowing to me. Watching you hit your peak of angst with us and then come back down has shown me that it is ok to show all of ourselves.

I even forwarded the article to my sisters imagining that they will gossip about me having a pity party. I didn't care what their reaction would be although i hoped it would be like you women.

You have all taught me that woman with breast cancer are not only brave but so compassionate.

After expressing what a hard time i was having last night I woke up with a stronger feeling that I could handle this. Even if they don't allow me to have chemo i will deal with it. So pity party or not letting it out improved my outlook.

I can tell it has been a struggle this week for many of you but you did it and you shared with us. What a gift. We ARE sad but we keep going don't we?

Yes, Wrenn. We keep going. We will get to the other side of this, thru good time and sad times.....we will get thru it!

Wrenn, Great article. I sometimes think I should make a list of things to not say to someone who has cancer..."stay positive" would be high on that list. While we all try to stay positive, we have cancer!!!! This is not easy, and we all have our high highs and our low lows. Every time my mother tells me to "treat it like you have a cold, and you will be fine"...I think it is a good thing she is 900 miles away ( and she wonders why I do not want her to visit too often). I think I would offend almost all of my friends and family if I published it, so for now, I keep it on my iPad, so I remember it and do not say something on the list to others in the future. Thanks for sharing the article. When will you get answers on your chemo, and the plan moving forward? You and Lisa have had to go through so many delays, I feel for you both. I am hoping all moves forward for both of you with no more unexpected delays.

Lisa, I hope you can get some answers and relief in regards to your pain. I also hope you can be put in touch with a LE specialist who can address the LE. And do not even worry about what they write on the ER form... they are just so dumb with what they write sometimes. My daughter once had a spot on her leg that was over 2 inches long that looked like a second degree burn...HUGE blister. But she had not burned herself. The doctor said maybe it was a bug, and wrote "bug bite" on the sheet. I happened to have her with me when I stopped at work later that day, and our medical director was there, took one look, and said, "that is from a blister beetle". Needless to say I have never been back to the initial doc, but seriously...bug bite??? I had a dermatologist write a similar thing for my son, who was referred for something. From our medical software, I know we have a very limited number of choices when writing a few things like that, and that's where some of those dumb things come from...some software designer with no medical knowledge. I am veering way off topic now...must be tired. Good night all!!!!!

Hi Everyone,

I noticed someone posted on here wondering what happened to part of our group. I have not posted in quite awhile here as I had surgery then internal radiation and didn't have to have chemo( Oncho Score 18) I realize from reading all your posts that if I had had to have chemo you all would have been there for me. I feel bad as I can not offer advise to anyone about chemo or external rads, as my journey was a lil different.

That article about sadness and about the uncertainty of the future really hit home. I sometimes practically make myself ill thinking it will come back since I didn't have chemo or because of internal radiation. Nothing is guaranteed and really truly its all scarey!!!

I think of all of my Aug sisters and wish you all well..:)

Wrenn - I think you should post the In Defense of Sadness article on the October Chemotherapy board as well. I'm going to print it and bring it to my Oncologist office tomorrow.

Well, this is getting normal.....no chemo again!

2 of the 3 incisions from last week surgery have split open. I requested the delay - I want these closed up and NOT draining before chemo starts.

Been having really bad headache for 2 days - so I'll post more another time. Right now, chemo resch for next week.

Lisa

I am so sorry for the added delay, but healing seems to come to a halt with chemo, so you were very wise to wait. I hope your headache goes away. (((HUGS)))

Lisa - so sorry your healing has delayed your treatment again. Sending healing thoughts your way....

Thanks everyone!  My headache has gotten better; I'm not throwing up anymore so headed in the right direction.

I was looking for some recipe books to purchase that outlined nutritional foods for chemo and beyond and I ran across one particular book called  "What to Eat During Cancer Treatment: 100 Great-Tasting, Family-Friendly Recipes to Help You Cope".  Looks like a very easy recipe book and wanted to pass on the info in case anyone was interested - I found the book at Amazon,  I was able to read a sample and what I liked best is they have the recipes coded so it's easy to find recipes for when you're dealing with nausea, when you have diarrhea, constipation, sore mouth and difficulty swallowing, taste alterations, and weight loss (very nice to have that reference as it applies to each recipe!).  I also found another recipe (I don't think it's in that recipe book) that I wanted to pass on (I posted it in the Oct 2013 Chemo thread so they had it in case anyone there was interested).  I plan on making it today or tomorrow and freeze it - thought whoever is going thru chemo might be interested.  So here it is:

MAGIC MINERAL BROTH

This broth alone can keep people going, especially when they don’t particularly want to eat.  It’s not just a regular vegetable stock.  This pot of “yum” is high in potassium and numerous trace minerals that are often depleted by cancer therapy.  Sipping this nutrient-rich stock is like giving your body an internal spa treatment.  Drink it as a tea or use it as a base for all your favorite soups and rice dishes.  Don’t be daunted by the ingredient list.  Simply chop the ingredients in chunks and throw them in the pot, roots, skins, and all!

6 unpeeled carrots / cut in thirds

2 unpeeled medium yellow onions / cut into chunks

1 leek – both white and green parts / cut in thirds

1 bunch celery-including the heart / cut in thirds

5 unpeeled cloves of garlic / halved

½ bunch fresh flat leaf parsley

4 medium red potatoes – with skins on / quartered

2 Japanese or regular sweet potatoes-with skins on / quartered

1 Garnet yam – with skin on / quartered

1 (8-inch) strip of kombu (Iceland Kelp Seaweed)

2 bay leaves

12 black peppercorns

4 whole allspice or juniper berries

1 tablespoon sea salt

Rinse all the vegetables well, including the kombu.  In a large stock pot (12 qtrs. or larger), combine all the ingredients, except the salt.  Fill the pot to 2 inches below the rim with water. Cover and bring to a boil.

Remove the lid, decrease heat to low and simmer for a minimum of 2 hours.  As the stock simmers, some of the water will evaporate; add more if vegetables begin to peek out.  Simmer until the full richness of the vegetables can be tasted.  Add the sea salt; stir.

Strain the stock using a large coarse-mesh strainer (make sure you use a heat-resistant container underneath).Bring to room temp before refrigerating or freezing.

Broth can be frozen for up to 6 months in a variety of airtight containers for every use.

I'll let you know what I think - but my taste might be different from others...... 

ndgrrl and poodlemum - glad to hear from both of you again!

Well, ladies....I tried that Miracle Broth and I thought it was gross.  Now I must admit, I hate vegetable soup or beef broth soup.  I only like chicken soup so that might have something to do with it.  But it is very bland!  My daughter tried it as well, the day before I did, and told me "it needs something...like maybe more salt and pepper".  But she said she would make it again for her boyfriend who has some health issues.  Me....as ashamed I am to admit it...I threw it out.  It was yucky and if I couldn't stand it while being "healthy", there was no way I'd be reaching for it if I felt poorly.  Oh well, I tried it at least. 

Got a cold or something.  Very congested and can't cough stuff up.  My co-worker was sick last week and she isn't all that concerned with keeping her germs to herself and I either picked it up from her or one of the clinics, doctors offices or some medical facility I've been at (I can't even remember them anymore as it seems I'm always being sent somewhere for something).  I started running a low fever on Friday; just 99.4.  So today I asked my PCP if it was OK to take an expectorant and she told me I needed to contact MO to see if they wanted a chest X-ray.  Everyone is getting concerned with my delayed chemo - but nobody more than myself!  Anyway, contacted MO and she said no x-ray was needed right now but when she sees me before Thurs chemo and thinks I need one, she can order it then.  I just do not want my chemo delayed so I wanted to be proactive BEFORE my chemo date. Since nobody answered if an expectorant was OK, I just ran and got one after work and started it.  Sent a message to my PCP telling her what I'm taking and to let me know if it is NOT ok.  I will be pissed (sorry for the word usage but it fits) if chemo is delayed again!  So everyone keep your fingers crossed for me!

As always, keeping everyone in my thoughts and prayers!