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 ~ Naked Beavers!

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.

Ok. Now this may fall under the catagory of TMI. But I have taken on the task of educating you about breast cancer and treatments. So think about the title and decide if you want to continue.

So early in the morning I had wakened and felt the need to scratch the pubes. And I wound up with a handful of hair. :eek So I got up (had to pee anyway) to investigate. I found I could grab pubic hair and it pulled right out. It did not hurt, just a tugging sensation. When I stood it looked a spider drowned in the toilet.

Now the funny thing is all the hair is from one side. ***snort**giggle *** So I have a half bald beaver! 

Here it is the end of summer and I finally have an easy bikini cut!  Apparently the hair on my head is not the first to go!  I knew that ALL hair was susceptible but thought it would happen all at the same time.  But apparently public hair goes first.

I keep swiping at my arms to see if that hair is ready to bail. Its still pretty tight. Chin whiskers are hanging pretty tough. Legs seem a little less prickly and the hair is definitely thinning. Bring on those chemo caps! 

Yesterday evening we went out driving and I wasn't wearing a cap. The windows were down and blowing my hair and you could see strands of my hair flying like dog hair. KJ commended that I was shedding. I see the Wig guy tomorrow evening and I suspect I will be balding by the weekend. So I'm clippering it down on Wed. I'm saving tufts of hair to tape to my head. ACS said many women are self conscious wearing caps that there's no tufts of hair hanging in front of the ears.

You can actually BUY tufts to tape in front of your ears. So I decided before the hair abandons ship I will cut my own tufts and put them to work!  For more information on hat hair go to 
http://www.tlcdirect.org/Hats-with-Hair-for-Cancer-and-Chemotherapy-Patients-Hair-for-Hats-American-Cancer-Society-TLC-Direct

TMI - within 48 hours, it was like I'd had a Brazilian bikini wax.  Not even stubble.  THIS I could get used to...hairless with no hair removal pain...scratch that.  Chemo is painful.

I shaved my legs last week and I still don't have stubble.  Now waiting on the head I guess.  This is day 17...

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 - Captain Chemo!

One of my young buddies wrote a comic strip for me.  Captain chemo goes to battle against the Lob Monster.  It lightened my heart as I walked into the Chemo room.

We met with Dr. Joe and it was kind of routine.  He just went over the side effects and what to expect these next three weeks.  Then he declared me healthy enough to have chemo.  Well yay me.

Faces have been altered to shield identities

 August 20, 2010

Welcome to the Chemo Clinic.

The clinic isn't sterile looking but with all the IV poles and such, it's obvious this isn't a normal waiting The chairs are a kind of vinyl, not comforting in the least.  It does recline but there's nothing homey about the room. The room is divided in two sides with three bays.  In each bay there's about 7 of these recliners.

I'm really anxious.  I'm ready to get on with this, but there is apprehension and the fear of the unknown.  How bad is going to get?  How much support am I really going to get.  How is my husband going to be able to handle his job, the house and whatever I throw at him or throw UP at him.  sigh

,

The nurse told me to find a seat.  I immediately chose the chair with the chocolate IV.  Lord knows I might need some chocolate to get me through this.  With more thought, the idea of chocolate kind of makes me feel ill.  Maybe I should have chose the IV pole with the Jack Daniels bottle.

More quickly than I'm ready, the nurse is there to access my new tender port.  I didn't use the Emla Cream as I'd considered.  I told the nurse to please use the "freezie spray when she accessed the port. She sprays and has me accessed before I even flinch. I LOVE that spray!! They have a bag of saline, and they start with the med Aloxi and the Dexamethasone.  The Dex is a steroid.  It is used to lessen my risk of allergic reaction to the chemo and to increase urine output.  I have already been peeing like a cow from the oral steroids I started yesterday.  I should be all pruney with my output.  The Aloxi is a medication I'm very happy for...it's a long acting anti-emetic.  It's supposed to work for 5 days.

The nurse brings over my chemo bags and confirms my name and date of birth.  She hangs the Cytoxin and the Taxotere.  And it's on.

4 hours later, it's over.  I've had to pee about a half dozen times, but haven't had any complications.  Oddly enough, I'm hungry and my love wants to take me to Cracker Barrel.  I have been warned by the nurses not to go crazy with food....I think I'll stick to Chicken & Dumplings.

 The Day After

Still feeling okay, but my face is BRIGHT red and HOT.  My husband keep asking how I feel.  I obviously have the classic steroid "butterfly" rash.

This photo is from my second chemo infusion.
Showing the "steroid" rash.

Sunday evening.
Something's happening.    I don't feel well, I'm aching all over.  I'm going to bed.

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!