My arm still hurts.  I actually think the Taxol has not helped anything.  My tissues are all inflamed and it makes my arm hurt worse than before.

I have a ton of lymphnodes removed from my armpit during surgery.  42 of them in fact.  You need your lymph nodes.  They channel fluid and help fight infection.  It is kind of a big deal.

Lymphatic massage helps but when every muscle in your body hurts and your fingertips are sensitive to touch, it is difficult to do the massage to yourself.

Compression sleeves are also recommended.  I can not believe how much it has helped.  I got this fancy one through the “seconds” page at Lymphedivas.  They have a large selection of sleeves and gauntlets but they are quite spendy and since I didn’t know if it would even work, I bought my first one for half price because it has flaws.  Obviously, there is fading on the sleeve. Hence the reason it is half price. It works perfectly fine though and has really helped my arm feel better. The sleeve goes all the way up to my shoulder and is surprisingly comfortable. It basically helps direct the fluid from my arm back to the trunk of my body.  I have noticed less pain when I wear it.  I am going to order another but am looking at different brands.  I have a prescription from my physical therapist and my surgeon so hopefully, insurance will cover some of the cost.

But the sleeve is excellent and a good fit for me.  The customer service person I spoke with when ordering was very helpful and I am so glad I finally ordered it as I was going back and forth with whether I really needed it.  Indeed I do.

My research shows that each sleeve worn with regularity only lasts a few months or so because the elasticity and fit break down.

I am pretty sure the sleeve is just going to become part of my life.  I am really tired of the pain and swelling in my right arm.

I do not actually have a lymphedema diagnosis yet (and I hope I never have one).  It’s pretty serious stuff.  If I get a cut or burn or bug bite on my right arm, I don’t have a good defense system there to fight infection so I could end up on antibiotics or in the hospital.  I really have to take care of myself.

I go see the Oncologist in a few minutes.  I looked at my most recent blood test last night and while most everything is low, my white blood cells skyrocketed.  They were already high thanks to Neulasta but this week they tripled.  I am thinking this is once again because of the Neulasta shot and I will be clear for that last chemo.  I am also hoping that we skip that shot since this is the last round anyway.

My plans for today is to sew another hat for myself.  I will post pictures if i get it done.  We will see how I feel.

I have a port.  It is near my clavicle and sits on the right side.  It is under my skin.  It hurt a lot when it was first placed but I barely notice it now.  My understanding is that it is purple.

My port is great.  They use it to give me chemo.  They just pop the needle in and voila!  Instant access.  They also use it to take blood.  It is wonderful.

My veins have always been hiders.  Once, this nurse came to my house to take my blood for a life insurance policy.  She stuck me five times and never got a vein.  I kicked her out of my house.  I’m not kidding.  I can’t tell you how many times lab techs have beaten my arms trying to find a vein.This is why I requested a port.  And it has been lovely.

The one unfortunate thing about my port is that it was placed on my right side.  I am getting radiated soon on my right side and the port will have to go.

I am kind of bummed to get it out but there you go.

My last chemo is coming up and the port removal is scheduled for a week after.  When they put it in, it was done at the hospital in a surgical room but it seems the doctor will be taking it out in his office.  I am kind of freaked out about that.  In his office?  Really?  What is that going to be like?  It is under my skin!

After they put my port in, the hospital took me back to recovery and gave me a nice sandwich. I don’t think I will get a sandwich at the removal.

Today I had my blood drawn and for the first time, there was a problem.  She put the needle in my port and started to inject this fluid and it HURT.  A lot.

It turned out my port had moved sideways and she had kind of missed it?  I’m not sure what happened.  It was freaky though.  But this nurse came and helped find it and they got my blood and that was it.

Not the best story but we did go to a yummy bakery after and bought some monkey bread and quiche.

Still not that exciting but it was the highlight of my day.

The boys got Disney Infinity and it looks to me like the most boring time waster on earth.  I am not impressed.  I mean, the graphics look good but there doesn’t seem like much to do.  It’s no Harry Potter Lego, I’ll say that much.

My arms are hurting from typing so that is all I’ve got today.

The summer is fading and normally, that is very sad for me.  I love everything about summer, even the heat.

Not this summer.

This has been a summer of endurance and change.  This has been a summer of solitude.

I have watched the world through my computer and I have been mostly content to recede into the dark.

No one wants to see this.  It’s too ugly for summer.

This summer of endurance has not been my friend but I know I will reap the rewards of what I have endured.

This summer was a surprise in many ways.  Illness.  Illness has a way of separating the men from the boys if you will.

There are some people who have wanted to face this with me and others who have cheered me on from afar.  That’s good.  I am grateful.

There were also let downs that I do not have the energy to deal with in this moment but have not forgotten and am not sure I can forgive…but that is for another day.  Not today.

And as fall approaches and a fuzz of white down graces my bare head, I know I can handle whatever is next.

I know I can not classify this as the worst summer of my life.  It has not been.  It has been painful and traumatic but it has also made me learn and grow.  And isn’t that what we are here for?  And while I will be glad to see this summer gone, I can still see the long road stretching out ahead, the road that leads to my recovery.

Good bye summer.

I am actively staying on top of my medication.  I am feeling pretty good this round but it’s early.  My teeth hurt where I’ve had fillings.  My neck hurts a little.

But no lobster pinches.  Yea!

My friends and my family of course!

I have the most amazing team of friends.  You know you don’t realize how difficult and complicated it can be the job of being a mom, until you can’t do it anymore.  I’m not talking about the hugs and love and whatnot.  I’m talking about the day to day.

And let’s face it, mothering school-aged children is all about the driving.  Being on the drugs I am, driving is something I can not often do.  My girlfriends stepped up (husband too).

These people watch my kids when I have a treatment or an appointment.  We cancer patients have lots of appointments.  More importantly, they LOVE my children.  And I so appreciate that.

Cooking is another thing I can only do sporadically.  I am so weak and those first few weeks on chemo, so nauseated.  My friends stepped up.  Old friends, new friends, people I hadn’t seen in years came out and brought us meals.

One friend arranged for cleaners to come every other week.  I am, oh my gosh, so grateful.  i don’t like to clean in the first place!  This is awesome.

People bring gifts and popsicles and cookies, and boxes of candy.  People send cards full of love.  People send pajamas and socks and shawls and quilts and stuffed animals and flowers and plants that I often kill.  I’ve bot the world’s blackest thumb.

People pray for us and ask their friends to pray for us.

They come and visit me and go for walks with me.  They love me.  I never expected that.

And the texts and the Facebook messages and the phone calls.  Cancer can be a lonely disease but I don’t feel it.  It’s amazing.

Friends and family take care of us and I am so grateful and humbled and awe- inspired.

Thank you, thank you, thank you.

I am so blessed and lucky to have these people in my life.  They are the foundation of my team and I love them all.

My hypnotherapist told me that I have assembled quite a team for myself.  And she’s right.  I only use the best.

My breast surgeon was excellent.  I am confident in her abilities.  I know in my heart she cleaned out every bit of cancer that was there.

My plastic surgeon has done a wonderful job and has worked hard to keep me smiling.  I saw him right after I found out I was stage 3C and I was a mess.  He showed compassion and caring that went above and beyond what one would expect.

My oncologist just knows her stuff.  She has patience when I ask all my questions and she is very protective of me.

My acupuncturist is a dream come true.  She is a caregiver who has many answers to my questions and always has an article or book recommendation for me.  I don’t know what I would do without her.

My hypnotherapist is just the best.  On our first visit, I was a wreck.  First the AC chemo made me just feel awful but I had also been through so much emotionally and physically.  And I was so scared of my prognosis.  But she is teaching me to trust myself and trust my body.

My Reiki Master/Practitioner I met at Breast Cancer Connections on their free Reiki day.  He worked on me for 30 minutes and I was hooked.  What is Reiki?  Well it is also called Healing Touch.  A Reiki Practitioner puts their hands on you in specific (appropriate) places and channels energy into you.  I had my first Reiki session 13 years ago on my honeymoon and I have been hooked ever since.  I, myself am a practitioner but I usually only work on my family.  Why go to someone else for Reiki?  Because for some reason, I seem to be blocked at the moment when I work on myself.  I try to see my Reiki guy before each treatment.  I saw him last Thursday and I was not feeling well at all.  I practically jumped off the table and the next day I felt so much better.  It works for me.

My physical therapist is a powerhouse and she knows all about lymphatic massage.  Her mom is a breast cancer survivor.  She has really helped me a lot despite the fact that she won’t let me do my beloved Bikram Yoga.  Sudden heat changes can contribute to Lymphedema which i am at risk for due to having 42 lymph nodes removed from my breast and armpit.  No hot tubs or saunas either.  Not ever again.  Bummer.

I think I made the right choice with my Radiation Oncologist.  He seems like a kind and knowledgeable person who will get me through this next phase.  I went with the person my oncologist recommended and I will be going to a new facility that is beautiful.  I was worried about  being with newly hired technicians but my doctor assured me that he brought his “A-team” with him when he moved over.  I feel as good as I can about radiation.  My kids keep asking me if I’m going to turn green like the Hulk. But I feel good about this next phase.

I am adding a new person to the team. My Oncology Social Worker.  She called me yesterday after I talked and cried to my oncology nurse (who is also wonderful).  I am hoping she can also help me sort out all my feelings.  None of this is easy.

And last but not least, my amazing husband who has stood by me throughout this entire ordeal.  He protects me and takes care of me and goes to every one of my chemo treatments and sits with me.  He holds my hand when I get scared and listens to me patiently when I am chatty from drugs. He takes care of our children when i am in bed sleeping off the chemo.  He goes on walks with me when on the rare days when I am feeling good. He is my rock and my strength.  I picked a good one ladies and gents and it wasn’t by mistake.  seriously, all you single s out there looking for a partner, ask yourself this, will this person be with me truly in sickness and in health?  Because it is important.  We never thought this would happen to me at age 40 but it did and we are facing it together. That’s marriage. I would be lost without him.

I feel very lucky to have the team I have and to have good insurance to cover a lot of what I am going through.  Believe me, I take nothing for granted.  These people have saved my life and I am so grateful.

We found out something we had overlooked from the pathology report.  The cancer in my lymph nodes, a couple of them at least, the cancer had broken free of the node and formed some extensions, hence the true need for radiation.

I looked over at my husband, holy crow.

When you are going through treatment, or at least, when I am going through treatment, you kind of forget about why you are there in the first place.

Like lately, all I’ve been thinking about is the excruciating pain i am in and how to get through that.

But then the pathology comes up and it scares me.  Deeply.

I have seen a wonderful hypnotherapist who is helping me work through those fears.  The main focus is on my ability to heal.  And I know this is true.  The scars from my surgery have healed surprisingly well, any wound or scar that I have had in my life heals fairly well and fairly quickly.

Our bodies are designed to heal themselves.  This is a truth.  This is why we have an immune system and blood cells and blood for that matter.

A lot of our healing comes from us.

Still it is scary to hear the Radiation Doctor say things like I should expect my skin to become pink and even red with radiation (burns) that this is actually the goal.  Who wants to hear that?

And you know in my last post, I wrote that cancer doesn’t change the person who is going through it, not fundamentally.  Well that’s a little bit wrong, at least for me.  I have changed in that I need to be surrounded by kindness.

I need kindness love and empathy more than I ever have in my life.  I have found that most people know how to do this.  Heck, our family dynamic changed overnight with my diagnosis.  There is so much love in our family.  So many snuggles and hugs and warmth.  Do we still have moments where we disagree?  Of course!  But most things don’t escalate to a fever pitch.  We are gentle with each other.  And the love keeps growing.

I don’t have time for people who dislike me or tease me or hurt me.  I don’t have time with people who don’t follow my rules or cross my boundaries.  I don’t have energy for a person who would pick a fight with me the day before chemo.  I definitely don’t have time for anyone who would want to physically hurt me, especially while I am going through this hell.  I really don’t have time for anyone who claims to love my children and then tries to mess with their heads or cross their boundaries or hurt them in any way.

And all of this has happened this summer.

So this is my advice for those of you, my readers who may have a loved one going through this hell called cancer, be gentle with them, even this is not the normal script for your relationship.  Be gentle, Be kind, Be compassionate.  Don’t insult the cancer patient.  Don’t give unsolicited advice.  Don’t laugh at them while their hair falls out into a bowl.

Our situations are dire but that doesn’t mean we are out.  And just because a cancer patient is scared and vulnerable, does not give anyone the right to jump in and attack.

And respect the cancer patient.  Even if you disagree.  Even if it hurts you.  Even if they say something like “Please don’t come see me right now”.  Respect their wishes and understand that it is not about you.

And if you screw up, say sorry.  And not the backhanded “I’m sorry you are a damaged person” kind of sorry. I have cancer, I already know I am damaged.  I am damaged and weak and vulnerable and sad and scared, no! TERRIFIED.  I don’t need anyone to tell me I’m damaged.  You are going to be served with a nice hot bowl of STFU if you say that kind of thing to me.  Like I said before, I’m feisty and cancer is not changing that.

Be gentle with me. We cancer patients may not be able to change right now, but you sure can.

When my Dad was sick, we had a misunderstanding.  I asked for a clarification on a drug he was going to start taking and he thought I was judging his decisions.  I was not in any way doing that. I was honestly confused.  But we had a lifelong script of misunderstandings under our belts. He got upset with me, his wife got upset with me and I felt that there was nothing I could do to fix their perception.  So I just didn’t do anything.  I stopped communicating with them completely because I just felt like every time we did talk, I kept stepping in it.  But now that I have been through this I know, I should have done something.  I should have somehow said sorry.

Eventually I did but it was months later in a hospital room.  When I finally apologized, I told my dad that every time we talked it had felt like we were speaking a different language and hurting each other so I bowed out because I didn’t want to contribute to his illness.  And he nodded his head and said he got it.  But I should have said sorry right then and there when it happened.  He was the one who was sick and I should have had the compassion to at least try to change the script of our relationship and just said sorry right there and then.

Because when things are dire, it’s not about being wrong and right.  It’s about letting the person in the situation know that no matter what that you love them and wish the best for them.

One person came to visit me a couple of weeks ago and let me tell you I was nervous.  Our normal script is full of snark.  But it was a snark free weekend.  He changed the script.  Heck, we changed the script…and I am so grateful.  Afterward I wrote and thanked him for his compassion. It was very healing.  I am so happy he came to visit.

We cancer patients, we go through enough.  And some of us are so down, we can’t change, but you can.  Be kind, be gentle, bite your tongue if you have to.  Love us.  Change the script.

That’s all I’m saying here, it’s about love.