Pink Ribbons ~ Three’s a Charm

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   This is me sharing with you from the other side of breast cancer.

 
These are not current events, events are from October 2010

I apologize for the length of time since the last post.  My family is in flux at the moment and my access to the internet is spotty.  I am now going to attempt to upload blog (I've still been writing offline.) entries weekly and scheduled by blogger.  I'm sorry for any distress I may have called.  I DO not have a re-occurrence of cancer as a concerned reader emailed to ask.  ;)

Chemo last Friday went pretty well. Dr. wasn't happy with the nausea and vomiting I had previously. So he worked up a whole list of meds for me, some IV for the chemo infusion and some to take orally here at home. THOSE were not cheap, as we had to go to a non-provider pharmacy but the insurance will reimburse us about 80% of it. Let me tell you they knocked me on my butt! They kept the nausea down for sure. I just had a little up til Monday and it was gone. But sometimes the cure is almost as bad; I thought I was going to crawl to the bathroom a few times. I was so lightheaded; everything was so bright and whitewashed....I was not digging it!

I had the Neulasta Injection a couple of days ago, but he reduced it to a half dose. IF it’s going to fire up my bones it will be tonight. I can feel my bones kind of tuning up now. One bone will throb and it will stop and another will start. The nurse giving the shot suggested I start taking the Percocet at the first throb of pain. I had more muscle and joint pain earlier in the week from the Taxotere. I run fevers with it too. Its not fun and it hurts and slows me down. But it never gets to a level where I’m gasping in pain. It’s more of a groaning, “want to cry” kind of pain. Everything just throbs, walking is pain and a serious chore. But it’s like a level 6 at its worse. I mean it hurts, and moving is hard but I’m not crying out in pain. :/

When I was at chemo, a woman from the American Cancer Society came around and gave everyone a little gift. It was a tea cup with chocolates and lip balm and lotion samples. You KNOW that I was thrilled with that.

I told Dr. Joe about mom’s surgery and how family had forbid me to go. He said as far as my treatment...her surgery was scheduled perfectly for me. 2 days before chemo MY LAST chemo! So IF I feel up to it, I’m going to the hospital. If I’m still having pains I won’t attempt it. It’s still two weeks away and things can change a lot by then.

I had a laugh last week when I went to Kohls to check out their breast cancer awareness display. There amongst the therapy socks and gloves were "quick dry hair clothes" with pink ribbons embroidered on them. They are supposed to soak up moisture and dry your hair faster. I know I have had such a hard time getting MY hair to dry. I burst out laughing. People probably thought I’d lost it, standing there - bent over and holding my stomach and laughing with tears in my eyes. It just struck me as hilarious.

This week K and I have had a few giggles as we attempted to dry my hair. lol It’s good to have a mate who is right there with me in this. One day he surprised me with a banana cream pie...oh my. I asked him what he was going to eat? He thought I was joking. So I let him have a piece, maybe two. Since he also surprises me with the occasional chunky monkey....I thought I could share.

Linda –

That is rather ironic and funny about the quick dry cloths being right next to cancer paraphernalia.

Thanks for the update! Be sure and take your doctor's advice and take the percocet. My former doctor (now retired; I miss him!) always said that the pain is faster than the medication, so don't wait until the pain is unbearable to take your percocet.

I am praying that your pain eases and that you're able to be with your mom when she has her surgery, and praying that her surgery goes well.

I hope you don't think it's silly, but I also prayed that you'd be able to taste the chocolate. (((Tina)))

Rosey –

No Linda not silly. I consider chocolate an essential food group. :) I have taken a pain med already as I can feel the bones are amping up. I can groan through pain at a 5 or 6 so if it stays below I can deal with it. I’m sucking on banana pops to try and stay hydrated too.

The funny thing about the hair towels was that they were pink BCA merchandise as well. I know that people without cancer buy the pink ribbon stuff in support of someone or as a donation. I thought it funny that the merchandisers or the store didn't consider how a survivor would view the towels. I choose humor but I have a friend diagnosed the same day who is having a really hard time. October is beating her up because she feels everywhere she turns; the world is shouting she has breast cancer. :( I’m kind of enjoying all the pink. It’s like the world is supporting me in recovery!

She’s still working and that just seems impossible to me. My father worked all through his chemo and radiation treatments and now I understand how much he suffered and how hard it was. He told me that there were times his coworkers just carried and covered him. I’m even amazed that he got up every day and went to work. He’s been gone nearly 10 years but I wish I could go back and give him a hug. For years, I would go home for the week of his chemo. His chemo was every day for one week a month. That week I was there to cook, clean and run their errands. Now, knowing exactly how hard it is, I’m so happy I was there for him.


Tracy -

I'm glad you saw the humor in the quick dry hair cloths. I truly believe that a person's attitude does affect their healing. Your sense of humor is keeping you sane!

Pink Ribbons ~ Dr. Joe Explains the Bone Pain...

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   These are not current events.  This is me sharing with you from the other side of breast cancer.

Monday I saw Dr. Joe. My blood values were through the roof. I had told them about my bone pain and how it felt like my spine exploded. He was not happy and said I should have called. I gave it a 9 on the pain scale and told him that MY 10 means I'm screaming in pain...which has only happened once in my life. But I was crying out and sobbing so it was a 9.

He left and came back with my lab results and said "this was the reason for your pain."

The neulasta injection is SUPPOSED to stimulate the bone marrow..which is where the pain comes from. He said "Well Tina, we sent yours into overdrive!" A normal high wbc count is 10.4. Mine was 37.8!!! Three times normal. My percentage of immature blood cells was 33.3 and high normal is 6.5!!

He told us that it's a gamble sometimes. He can't know which patients have good bone marrow and which ones don't. He said I had REALLY good bone marrow. So this next chemo which is a week from Friday (sigh) he's NOT going to give the me the Neulasta injection and then watch how low my blood counts go. I go in for a lab draw on the 20th. IF it's fallen below normal he may give me a 25% dose. He said he can always give a little medicine but can't undo it once I have it.  He guessed because I was SO YOUNG, my bone marrow is still working well.

He believes the muscle pain is from the chemo, as was the fevers. He can't reduce my chemo dose and I told him I did not want him to. I can tell myself the chemo is hurting me but doing its job. If he reduced it just to make me more comfortable, there's no assurance its strong enough to do the job.

It IS harder to face this next dose, because that I KNOW what's coming and I know how bad I will feel. But I even still I wish it was this Friday instead of next Friday. Kind of like "get the show on the road."

But I am enjoying some good days. I tire easily but find I can do light housework. I did dishes, swept and vacuumed the living room! I made my bed and even cleaned the toilet! I rest 30 minutes between chores and find I can do light housework.

I'm in the Nadir period of chemo which is a fancy medical term meaning the "off weeks".  Really it refers to the effects of chemo on the cells in the weeks after the dose. Normally they would be at their lowest cell activity. Mine are not because of that shot. But because mine are so high he gave me clearance to go see mom. Just using normal chemo precautions, I am to avoid children.  *sad*  Nurse Robin said that children are walking "petri dishes" of virus' and germs.

So we plan to drive out late sat afternoon and come home around noon Sunday. Mom is having bladder surgery...she hopes by the end of Sept. It's a situation where she may not survive. HER blood levels are poor. She's anemic, has low wbcs and very low platelets. But we all gave her permission to die. We know she's miserable right now. The surgery will improve her quality of life. If she dies seeking a better quality, we are at peace with her choice. Living like she is now...isn't life. But at the same time I want to see her before she takes that step.

Linderlou:
It's so great that your doctor is on top of things. He sounds absolutely wonderful! I am praying that your pain becomes more manageable. It must do your heart good to be able to do a bit of housework because your personality is not that of a couch potato. I hope that resting in your lovely chair in between is helping.

MarylandCrab:
So you have super hero bone marrow!  Makes me think you've got super hero healing properties too!  I get the dread of waiting for the next treatment, not sure how to help you not dread it, but I'll be in prayer for you to have some calm about the next treatment.  And I'm sorry to hear about your mom, I'm sure this is tough on all of you.

Pink Ribbons ~ Discussing the "Girls"

Pink Ribbons is a feature series I have started that is posted every Thursday.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.   These are not current events.  This is me sharing with you from the other side of breast cancer.


August 2010

Well, we bought a recliner. I spent more than I thought was necessary but Mr. R was persistent. This puppy is soft and it is a Cadillac model as well. I mean it has massage and heat as well as a mini cooler. Okay the cooler is basically an insulated well with these ridged chillers. You freeze those and slip them in the well along with my protein shakes and the only reason to get out of it will be to use the toilet.

I balked a little at the price. But Mr. R is aware of my fears about bone pain. He sold me with "consider how that heat and massage will feel if your bones are hurting." And it was something to consider. K told me that I needed some comforts as well as a plain recliner. So it will arrive Friday morning before I leave for the chemo appointment.

It was bittersweet buying the recliner. I mean the salesmen wanted me to be excited. But it was hard when you are buying a recliner because the chemo center tells you a recliner works best for people coping with chemo.  I wasn't just buying a recliner for the world series. I'm getting this to help me recover through chemo and a half dozen horrendous scary surgeries. I'm glad to know I will be in the lap of comfort but I couldn't muster up the will to do a cartwheel for the sales crew. I finally told them I was getting this to help me recover and they quieted down about all the "Aren't you excited? My husband hasn't bought ME a recliner!"

My shoulder is in spasms again. There must also be a nerve very close to the port. With arm movement I get a zinger that moves from the port area down across the shoulder. I was ready to come home and rest again. I still feel like a wienie.

Got a letter from the insurance company. They graciously agreed to pay for the big expensive injections I'm getting. One to prevent nausea....that's $400 but they apparently cover at 100% under major medical. The other...the Neulasta is the bone marrow medicine that is supposed to cause the bone pain - its $1500 at retail. But apparently it too will be covered as major medical.  Thank the Lord for Insurance.

The nutrition stuff with chemo is a little overwhelming. They over stress the importance of protecting yourself from infection. I can't eat at buffets or salad bars. Where I might be able to fight a little bug from unwashed salad pieces or the tomatoes that didn't get washed well, on chemo I can't. So I have to buy processed salads not fresh deli. They suggest no deli at all in fact.

Eating out isn't even easy. I mean the guidelines say to insist that hot food is hot and cold is icy. No medium rare meats, no mayo or dairy based foods. This is gonna stink! I had another word in mind but in diffidence to those of you who don't like crude words...I'm avoiding it. But boy I'm thinking it. Something about this experience is bringing out the potty mouth in me.

Although I still feel modest. They said they will spray the port area down with a freeze spray and I'm thinking...they don't expect me to expose the girls do they? I mean yes... I am getting rid of them and building new ones but for right now...they are still mine.

I was reading a user manual on breasts and found interesting stuff.

The author hates self breast exams as promoted by breast cancer advocates. She says....it's a "fear promoting hunt for cancer" that every woman who does one, does it in self loathing. Instead, she believes women from puberty on should be taught simply to know their own set of breasts. It's okay to touch them without "hunting for cancer" and feeling sick that you might find something. I know I was that way...doing the exam almost haphazardly hoping I would find nothing.

The whole self exam was created by a doctor a couple centuries ago because women were taught it was "nasty" to touch down there...and "down there" meant anything under the chin. So they would finally go to a doctor so riddled with cancer they couldn't ignore it anymore. The doctor came up with the self exam as a way to satisfy the puritanical need to avoid sexuality by making it only a medical exam. It's okay to touch your breasts this way because it's medical....not sexual.

So she believes that our daughters should be taught to examine their breasts...not to look for cancer. From puberty they should be taught to understand what was normal for their breasts.  Then knowing what was normal they can identify changes that don't necessarily mean cancer....but that something changed and  it needs to get checked out.

Self Breast Exams

It wouldn't make a difference to me. Although it does frustrate me that so much emphasis is placed on breast LUMPS. 20% of us have a cancer that doesn't grow lumps. I DO think its interesting that in the early spring or so that I noted to KJ that I wasn't aware my right breast was hanging so much lower than the left. Had it always been that way? He didn't know. Now I find out there's cancer in that one and I can't help but wonder....was that realization a recognition that something had changed?  But I did not know this change in appearance was a sign of lobular cancer.

5 surprising signs of breast cancer

So what do you plan to teach your daughters about their breasts?

Meeshia:   I am being honest here (don't throw anything at me), but I very rarely have ever done a breast exam.  I guess it is because no one in my family has had breast cancer (lots of other cancers) but not BC.  So, I do it whenever I remember.  So maybe this will be a good time for all of us girls in my house to take some time to really get to know their bodies.

Rosey:  According to my book 70 - 82% of breast cancer diagnoses are those with no family history. It's truly sporadic as to who gets it and when. The other group of women know they are at risk and look for signs. Thus they are more likely to find them earlier than someone like yourself, who mistakenly believes they aren't at a high risk to develop cancer.

My only question for those like yourself or other moms with young daughters, would be how to explain what is a "normal breast". I couldn't recommend this book...Dr. Susan Love Breast book. Mainly because while it does talk of what is normal the majority of the book is about the abnormal. Which as a teenager it would have been ripe data for an overactive mind. I would have read ahead and scared myself. But not all girls would have been as bad as I am.

Tracy:

I've never done an "official" self exam because my breasts are lumpy and it freaks me out. HOWEVER, I do know what is normal for me and what is not.  The left one has always been bigger, etc etc. I do believe I'd know if something was "off". I got to know the girls very well while nursing. I had a lot of infections and plugged ducts and was feeling up myself a lot back then   My ob/gyn actually advocates what you do~knowing your breasts enough to know if something is wrong, but not necessarily doing an official "exam".

Rosey:

I don't know how I would teach a dd how to "know her breasts". Mine have always been nobby and when you press in on the tissue you feel all those nobs and bumps.

Did you know once a woman has breast fed a child she is capable of producing milk at any other point in her life? Once we have breast fed we continue to have circulating prolactin. If you squeeze or suckle the nipple, we release oxytocin which will increase the prolactin production. If you increase it enough you can continue to lactate for years. I knew that but don't think I realized it was so easy. Dang, I could have put K to work.....make me lactate and use up those ice cream calories! bwa ha ha...wouldn't that startle our dh's!  Not to mention some companies out there pays good money for breast milk to sell for sick premies.  Or you can donate directly to a NICU after you are tested.

Abeybabymama:  That must be how they had wet nurses back in the olden times. That seems so odd now to think of someone else nursing your baby.

Pink Ribbons - Chemo Class

Pink Ribbons is a feature series I have started that is posted every Wed.  I am a Pink Ribbon Warrior, having gone through the chemo, surgery, radiation, the year of waiting and recently stage 2 reconstruction...which I find is really the first of many little surgeries.  I am at a place in my life where I am willing to open my journal from that time and share with you my anger, fears, challenges and pain of finding out you have cancer.  At the end of the post, you will find the links of the previous posts from the most recent first and going back.  These are not current events.  This is me sharing with you from the other side of breast cancer.

I actually wrote this after my first chemo treatment, but placed it here on the blog for continuity.

I am finding that a lot of people aren't familiar with chemo or the effects on a person. As some said...they thought it was mostly nausea. Ironically the nausea is a side effect most easily controlled. I do have some kind of nausea...the stomach clamps down and just hurts.

So welcome to chemo class.

I'm to be given two drugs for breast cancer...Cytoxin and Taxotere.

The common effects are as follows....

Nausea and vomiting. But they give medications to control that. Before I'm even given the chemo...they start with an iv med called Aloxi. It is an anti-emetic which means it's for nausea and vomiting. This wonder drug stays in your blood for FIVE days! I could definitely tell as it wore off. My actual nausea is under control.

The second effect is loss of appetite. I got that big time. Even when I do manage eat a little, seriously 2 - 3 bites and the stomach cramping starts and I have to quit. I have lost 12 lbs in a week. I know a good deal was water because I was retaining fluids like a sow. My cankles are now gone.

Next on the list is hair and nail loss. Losing your hair seems to be the classic effect of chemo, something everyone expects and notices.    It's nearly the first question asked when you hear "chemo"..."Will I lose my hair?  The worst thing about losing your hair is that you suddenly LOOK ill and people who don't know you start treating you like you are dying.   The other thing I notice is my hair insulated my head more than I ever knew.  I am freezing....I wear caps all day and night time too because my head just feels too cold for comfort.   Many people don't like using wigs and I admit I have a hard time keeping my wig in one place.  It slides all over, so I leaned more toward hats and scarves.

Red Wig from the American Cancer Society

Blond wig from the American Cancer Society
nearly my real hair color

Loved this pink hat purchased from the ACS,
along with a curly blonde "hair halo" from them
as well.

  

Newsboy's cap purchased from ACS
also a CLASSIC example of 'roid rash.  Even my
eyelids burned from the red rash.

Head Wrap TAUGHT to me by the ACS,
Scarf was gift from my mom.

Nails - They recommend using nail hardener and I have been.  (They did not tell me this effect lasted months after your chemo.  I used nail hardeners until the last week of my chemo.  Then in Dec. *2 months later* I noticed one afternoon that my fingertips were tender.  I pulled off my gloves -I'd been outside in the cold - and discovered all but one nail had lifted over halfway back from the free edge.  This made the fingers very tender and the nails very fragile.  I had to cut them back as far as I could to prevent them snagging on fabrics and tearing off.  But I learned too far back was painful as well.  There is a paper thin lining under the nail that I inadvertently clipped.  I howled (it hurt) and bled like I'd cut the finger nail off.  So to prevent your nails from lifting...continue to use nail hardeners at least 3 months and preferably 6 months after your chemo has completed.)

My nails the last week of chemo...the only part of my body
at that point not suffering.  Nail hardener polishes were
mailed to me by my WOW friends from around the country.

Next is bladder irritation. I have to drink fluids like a horse to keep that from happening.  They had me so afraid of this, that I drank about 125 oz. of water daily.

Next is stopping of menstrual cycles. That may take more than one chemo cycle. Frankly I'm looking forward to that effect. Well except for the hot flashes...(In hind sight I can tell you that Aunt Flo was tougher than chemo.  Although I was told chemo would stop periods...it did not for me.  Lupron injections did and the hot flashes WERE intense.)

Then the lovely sore mouth or throat called stomatitis. It can actually happen anywhere along the digestive system. But I swish and spit a saline solution every 4 hours to keep it from happening.

Then next you have the risk of an allergic reaction. Taxotere is famous for causing it. So that's why they add steroids to the chemo AND I have to take dexamethasone the day before the day and after chemo.

Chemo also causes fluid retention.  This is another reason you are given dexamenthasone...it causes you to PEE like a cow in the field. You will believe you have just removed every ounce of fluid IN your body only to realize about 20 minutes later that your bladder is full again.  Your skin, hair, nails and mucous membranes however will be dry, cracked and bleeding.  It can cause diarrhea and I can attest that yes sir it does. :(

Chemo can give you a rash. I haven't gotten one this time at least. I developed intense red, burning rashes from the steroids taken to prevent the chemo rash.  Go figure.

Chemo can cause numbness in the hands and feet. I have had something like that. Kind of like carpel tunnel syndrome.  The more chemo you get, the more possible this effect.  (I did not notice this to be a problem until after my third dose.  It lasted about 6 months...mainly in my toes and my right thumb.  That was irritating.  A sore thumb might stick out but so does a numb thumb.  I lost count how many times I smashed it against something.)

Then there's fatigue. They said it would be like early morning sickness. And early on I think it was.  Again, this is a cumulative effect, meaning it intensifies after each dose.  (By the 4th dose, I felt like a sloth.  Simply unable to move.  It was way more intense than morning sickness.  I had a lot of soups because I was just too tired to chew food.)

Then there's the muscle pain. Only 20% of people on CT will develop muscle pain. I won that lottery. Doc gave me percocet and  with a lot of sleep it helped me get through the pain.   It was singly the hardest thing for me to cope with during chemo...the constant aching and throbbing of muscles and joints. (I don't know this is proven scientifically...but since my chemo I notice intense muscle and bone pain in cold, damp weather.  It seems that chemo sensitized my bones and muscles and they always react to the damp with pain.)

Late in the first week you have low blood counts. As red blood cells diminish you feel a special kind a fatigue. It's like a weary to the bone kind of fatigue and you find yourself puffing just getting up to go to a bathroom. White blood cells and platelets go down too. Basically your bone marrow has stopped working.

Because of the low blood count ....for those at risk they give us an injection called Neulasta. The Neulasta forces the bone marrow to work like a little sweat shop to create white blood cells. That medicine causes bone pain because of the sweat shop effect. It will help protect me from infection but it will hurt as well.   (I will share about the Neulasta injections in a upcoming post.)

Chemo is more than just vomiting and nausea.

So what did I learn in Chemo Class?

Fighting cancer with chemo SUCKS!