I've been chemo-free for two weeks now! I made a promise to you that if I beat Cancer's ass- I'd do a "happy dance!" (Make sure you click on the link, considering I almost put myself back in the hospital while doing this dance!)
I want to thank you for following my story of trying to win this battle, while at the same time taking the time to look out for yourselves, health-wise. Your support helped me to get here, and I adore you.
If you have been following my blog, you’ll know that 2 days ago I posted I was to go in today to have 4 chemo injections done in a 6 hour session. You know I have dreaded this- but they felt as I felt- I couldn’t handle the week to week any more. My body felt so filled up with chemo that I just knew I was the equivalent to being “Done!”
FOR ONCE- Something has gone MY WAY in this medical nightmare!!!
I woke up to a voice message from my Dr’s PA (no, that is not something you listen to music through! It stands for Physician’s Assistant, you radio/DJ nuts).
The message read like this: “Robin, I’ve sat and gone through your chart, took it tothe Dr, and she agrees: We Miscalculated! You have already completed 6 cycles of chemo- YOU ARE DONE!”
Picture me- in bed, listening to this message on the day that I felt would be the worst day of my life-… I sat straight up… literally threw the covers off and started jumping up and down!!!
I’M DONE!!!! I’m a SURVIVOR!!! You Helped me through- and I can’t Thank you enough for all the support that has come my way!!!
All this on the day before my birthday!!! WHAT A GIFT!!!! Holy Shit!!! Hey- I’m allowed to swear, it’s MY Birthday. Hmph!!!
This weekend I’m going to see my mom! 🙂 Finally….
The only bad news is, I’ve been choreographing my “happy dance” and figured I still had two weeks left- so I’m gonna’ have to wing it, which won’t be difficult since I’m pretty much dancing in my seat anyway!!! Be watching for my Youtube video! LOL!
I seriously don’t think I’ve ever written a piece and used so many exclamation points in my life. Improper, but who gives??
This is the best birthday gift I’ve ever received in my life.
Thank you for all the birthday wishes too, and NO- you’re not late! It’s tomorrow. My life begins again, today, said the Sugar Mom! …. <3
My Doctor has admitted I’m “one of a kind.” Meaning, she’s never had a patient who’s numbers have been the equivalent to a wooden roller coaster, where you hear the sound of the rickety-rick as it climbs to the peak and shoots straight down to the bottom, without hope that you’ll survive that drop! And of course, then there’s the subject of my personality… Ha! She admitted to me, that most women can’t handle 6 months worth of weekly taxol, let alone work and travel at the same time. I didn’t know that. I just remember my girlfriend Jane, who had stage 4 cancer and she’d have her IV pole at work, while being the GM of a radio station. I thought that was remarkable and tried to model myself after her.
Each week I’ve gone in, for the entire 6 months, it’s been a crap shoot. My white count is so low they can’t give me chemo or my red count is so low that I need a blood transfusion. I wonder how many people really are a part of my make up, at this point. All that blood from generous strangers…I wonder if it’ changed my personality? Obviously not- I’m still a bit crazy- unless they pulled from the “crazy blood bank!”
A perfect example is, I went to SC to see my kids last week. Had a great time until I woke up Sunday to a fever of 103.5. I know… you’re all picturing what radio frequency is in your market with that number! I’m not the only nutty one- I too remembered working for the Apple in NYC, thinking, “OH! So it all comes around finally!”
Here it is: 3 weeks left to go which includes 4 treatments of chemo.
My mom has been in and out of the ICU for the last 5 months. I’ve seen her twice which is the only way I’ve been able to talk with her, since she’s trached and on a ventilator. I was able to read her lips. Now I’m getting calls from the doctor saying it doesn’t look good. She’ll never come off the vent and her chosen POA is slipping into delirium. Can I come in? I’ve been forbidden to enter the ICU while my counts have been all over the map, which caused me to go to my doctor and ask for advice.
She said, “Robin your platelets are too low for chemo as of today. Your body is at the point where we don’t think you’ll be able to handle chemo on a weekly basis anymore. We can’t afford to keep missing weeks due to your counts being inconsistent.”
I never even saw what was coming…
All I knew was that this was going to be the hardest three weeks of my life- body tolerance wise, and trying to get to my mom in time.
She said, “come back on Monday for labs again, and let’s see if the platelets are higher, and if so- we’re going to give you the entire cycle in one sitting; 4 doses of chemo which will take about 6 hours- and then? You’re done. I started to cry… happy tears! All those moments of tearing quietly just broke loose.
After regaining my composure, please picture my mouth hanging open- as I said, “can I die from this?” She said, “as long as you don’t HIDE the fact that you have a FEVER from me again, NO… I don’t think so!” I tried to explain that I knew if I called her with that fever she’d have insisted I go to the emergency room in Charlotte- and I would get Stuck there- while knowing I still had a shot at chemo the next day! I told her I called my girlfriend Arlene instead! Remember? Arlene is up there in ranking with her! In fact they did their residencies together! She looked up in the air while shaking her head… and said, “and what did Arlene say?” I said, “She said, you’re NOT gonna’ die between today and tonight! Rest- get on the plane and go to your doc tomorrow.”
Now my doctor is looking down shaking her head, and said, “I’m glad Arlene is your friend, and I also know that no matter WHO you spoke with, you’d STILL not have gone to the ER!” I answered, “I’m HERE, aren’t I? My temperature, while less than 24 hours ago has dropped to 97.4… can I have chemo?”
The answer was YES- and a blood transfusion the next day.
So here I am, after All THAT- on a Sunday, waiting to find out if my numbers will shock the world yet again tomorrow… with platelets coming UP so that I can be DONE!!!! If not tomorrow, they’ll test me every other day this week, and the minute I’m safe the chemos will enter my system.
I had the sense to ask her finally, “and how will having 4 chemos injected at once make me feel? She said, “day 4-5-6 you’ll feel like a truck ran over you.” I wanted to know if that same truck would back up over me, and her response was, “it’s quite possible it’ll feel like that!” I saId, “what kind of truck!!!”
Ok! There ya’ have it! Next week should be it- not knowing which day is going to be the hard part- until the HARD PART!
If at some point next week you don’t hear from me on FB or here on my blog… you’ll know: I’m going through hell to get to heaven! Heaven being alive and well!
Cross your fingers, toes, what ever’s long enough to cross- just do it! Please… I’ve so had it.
I’m “cleaning out my closet” of life. All of a sudden I’m realizing that the important things should stay and the non-relevant things should go. Clothes, files, friends and so on have been looked at twice with intent on keeping only what really matters. Is it due to having an illness that has the capabilities of snuffing out my life? Maybe. We're not in Kansas anymore!
I think, when faced with cancer or any other life-altering disease, we eventually break things down in our minds, souls and hearts by way of a “life-like scale!” Let’s give everything a number: 1,2 or 3: if it’s a 1 it’s a goner; 2 deserves consideration and 3 is a keeper! I’m down to bare bones with my number system, which is very telling. I either embraced too many for the wrong reasons or didn’t embrace enough because I was always rushing. Now I look very closely at those I’ve kept, and try to take better care. Things and people that are precious to you, deserve that “extra lovin’.”
I sat with my Doctor and her two nurses last night, as she chose to make me her last appointment. Why? We all laugh about the most unrelated topics while I’m in her office! I mentioned once before that one of my nurses in the hospital told me that he had his favorite patients, and would save them for special times of the day so that he could have a lift! I guess it works the same way with Doctors… I never thought about a typical day from a nurse or Doctor’s point of view, have you? I find myself aggravated if the Doc is running late, or doesn’t have my chart memorized… or the nurse doesn’t know why they’re drawing blood, or that I hate shots! Now I get it! I’ve learned that there are certain patients that are draining to the medical staff; patients they wish they didn’t have – patients they run out of patience with, quickly! They also have their favorites, and I’m honored to know that I AM one! I understood quickly that after seeing so much sickness in people with lousy attitudes every day, they need a break; even if only for 15 minutes! They need someone who can make them laugh!
They reminded me of my first visit; where she broke the news to me about having cancer and how I became very indignant to her, and her nurse. I honestly didn’t remember it until they reiterated certain things I’d said; things I could easily picture coming out of my mouth! “I have no time for this; is what you’re saying at this point really relevant, or can I GO?” “I don’t understand One Thing you’ve said to me. I want you to talk to my girlfriend, who’s a doctor in NY; I’m calling her on my cell. Then SHE can tell it to ME in “real-people” talk”…. as I entered her number into my phone. Yup! I could easily hear those strings of rudeness spewing from my lips! As belligerent as I’d been to them then, is as close as we’ve all become. They’re strong women too and understood that I’d been in shock. Strong women support strong women!
We spoke of so many incidents that were so very important, where we each learned so much from the other. I easily said the words, “Yeah… I felt the loving from you right after you almost KILLED me with your first issued round of chemo – hell you put me back in the hospital for 9 days!” My Doctor who’s humble and sharp as a tack said, “I really thought you could handle the dose based on your daily routines and your fitness level! You shocked ME as much as yourself, by not being strong enough!”
How do you argue with a professional that tells it like it is? You don’t. You learn to accept and appreciate. I find myself thinking about how much I’ll miss them when I finish… and if maybe they’d want to go out and have a drink? As of right now, I drink only clear liquids based on her advice; including vodka! Ha! Some nights I’ll even make a very healthy smoothie and throw a couple shots in the blender! Come on… ya’ only live once!
I wanted to mention the CA 125 number that I’d shown you the last time has dropped even lower, to an 18. This means I’m trending low each week, which is a very good indicator that the chemo has worked! I felt free enough to ask her, “since I continue to trend low… does this raise the odds of the cancer not coming back?”
Silence.
I tried again from a different angle, “I mean… the odds of it NOT coming back are 15-20%… do you think I’ll beat those odds based on my numbers?”
More silence.
I looked from her to the two nurses, and no one said a word until she offered, “No, the statistics stay the same, but we want to do genetics testing and you may fit into some sort of medical trial, where they offer you new meds to beat your specific type of cancer.”
I felt like a tire that was running out of air. Never ask a question for which you’re not prepared to hear the answer! It’s the golden rule of sales- a rule I’ve grown up with, and I still asked the question! What could I have been thinking!
So now? I have to prove her statistics wrong, and the Bitch in me- WILL.
For those of you that are also going through any type of cancer, I have a “Robin To-Do” list. They are little tips that can keep you looking and feeling more like You!
(skip this part and head to the end if you’re not in need)
Don’t give in to the disease, no matter how sick you feel; make sure you dress, do makeup and wear a wig even while in the house. How you look can easily affect how you feel. When people meet you, knowing you have cancer, if you look the part, they tend to keep a distance from you. If instead, you look as good as you get, it shows people that you really care and that you’re a fighter! People respect this and would rather keep you closer.
• Makeup • Eyebrows- buy an eyebrow pencil that doesn’t rub off. I use “Ulta- BrowPower • Eyelashes- Mascara is important if you still have eyelashes, even if only a very few left use a curled wand and I swear by Loreal Voluminous! • If no eyelashes get fake eyelashes. This brand, Ardell really works. Don’t fall for the black glue tactic! It creates more anxiety and mess than anything else. White glue, blow on it for a good 10 sec before trying to put them on. The idea is to let the glue get tacky instead of wet. It only took me 30 years to figure this out after trying desperately to put them on my girls, unsuccessfully at dance competitions. • Eyeliner- very important to use the right one! Otherwise your eyes look like they blend in with your face. I use Loreal Color Rich on the top lid and inside the lower lid. It defines your eyes, and they are the most important part of your face! • Skin care- Loreal Revitalift face wash towelettes. • Pore reducers are great to use because they even out your skin tone. Chemo does weird things to your skin and this can bring you close to looking normal! • Cover up- something that’s almost translucent works best; just a touch of color. I use Rimmel Fix and Perfect.
• Translucent powder works wonders on top of all of the above! Use a big brush and shake off the loose powder before you apply it. I use Physicians Formula- translucent. • Blush- same method of application as the powder, and don’t go crazy with getting really pink. Subtle works best. You’re trying to look Normal not like you’re on stage. My choice is Happy Booster- Rose! • Spray tanning- it’s a pain, but the medium color will keep you looking healthy and not pasty. Ask for directions so you don’t turn yourself orange in certain places! • Wigs- always have more than one! You have no idea how that wig is going to wear, or last, or look on you until you start wearing it daily. A back-up is a necessity! I would stay away from real hair wigs, because I’ve learned that the chemo goes through your scalp and can destroy any wig, any time. Double sided tape helps; just a tiny strip across the front and very bottom in the back.
• Are we exhausted yet???
• Scarves are always good to have by your front door in case someone comes a’ knockin’… you can throw one on.
• Stop wasting your money on fill-ins or manicures. Your nails may change or have ridges, and the easiest and prettiest fix are the glue on nails that you can buy in any pharmacy department. BROADWAY NAILS are what I use. Only buy the ones with the tabs! You need to keep your sanity right about now, and the tabs help!
• Continue to wear high heels if you previously wore them. Your legs will stay in better shape.
• Understand ahead of time that you will gain a few pounds from the chemo, steroids and fluids that they pump into your IV. Just remember: it’s “water-weight!” Don’t get mad at yourself for gaining the weight; there are certain things we can and can not control. This is one of them. Eat healthy, lots of fruit, veggies, water, fish, and I swear I couldn’t make it through the day without a martini at night. Don’t tell your doctor I suggested this, please. When I told My doctor that it was a part of my regimen she almost fell off of her stool. I explained that she’d said, “Clear Liquids!” It’s the first time I’ve seen her speechless.
• You will be colder when it’s cold outside. Always have a sweater or jacket.
• You will be hotter when it’s hot outside! Dress in layers and don’t be afraid to take them off!
• Always carry Murine, your eyes get a little crazy during chemo, and it wouldn’t be a bad idea to get those pharmacy glasses a bit stronger than you may normally need. They say not to change prescriptions while on chemo because your eyes will go back to the way they were when you complete the cycles. Pharmacy glasses are the easy fix.
• Skin moisturizers are very important to use every day. You’ll notice your legs and feet will be dry. Just get in the habit of rubbing it on every day.
• Your hair- don’t wait for it all to fall out. I did that until I thought I’d die just from being mortified brush-full by brush-full. It takes guts, but you’ll be much happier to have it all shaved off and throw on your wig, than you will be watching it daily disappear. Or seeing it on the counter, on your clothes and the floor.
• Nausea- hard candy to suck on helps. Red liquorish too! Some say tea, lemons, unfortunately you’ll have to find your own magic trick for that one. Peppermint gum also works!
• If you get that “chemo taste and smell” stuck in you, try using plastic utensils. It lessens the metallic taste in your mouth.
• Get the port! It’s easier to have one place that they take your labs from and inject the chemo into, than to try and find available veins every time. You’ll wind up as one big black and blue blob that hurts! The thinner you are, the more the port will stand out, so be prepared to wear scarves or bring your hair/wig to the front, so that it rests on top and hides it!
• Cold Cap is a devise that some people swear by, but it’s uncomfortable. It’s a dry ice type of cap that you wear on your head while the chemo is injected. It’s supposed to stop hair loss. I found out about it too late.
• Biotin is supposed to help regrowth of your hair after you finish with the chemo.
• Finally, your doctor’s job is to make you as comfortable as they can so don’t be afraid to call and say, “Hey, I feel like crap! What can we change that’ll make me feel better!”
All of this to make yourself look presentable to the public and your family! It’s a lot of work, but once you get into the routine it becomes quicker. I promise.
(OK! We’re Back!)
I’ve been given a finish date if all goes according to plan! Mach 3rd is my last chemo injection. As exhilarated as I am to know it, is as frightened as I am to see what those next three months will show, when I go back for that quarterly blood test. But just the fact that I don’t have to have the meds or leave work or worry about reactions to the meds for three solid months, is a blessing! I’m excited to see what color my hair grows back as- they say it’s always different!
The week before last, my red count was a 7, which is dangerously low; with a normal count being 12-15. It’s severely anemic and the nurse couldn’t understand how I’d been to the gym the night before without dropping over from exhaustion! My Dr. was in surgery, my chemo nurse found a "go-between" nurse to ask if I could go through with the procedure.
She said “No.”
I said, “I want to talk to her nurse, not the "go-between" nurse. I want my chemo!” She left the room and went on the hunt for my Dr.'s nurse.
She came in, sat down and said to me, “Do you know how much I dreaded coming to see you today because I had no makeup on?” I said, “Are you crazy? You’re beautiful either way! Did you not work all day around people that saw you with no makeup?” She said, “Yeah, but you’re a cancer patient and you have chemo every week, and yet you still come in here dressed to the nines, makeup and hair perfect! I just can’t stand that I don’t look like I should when you’re here!”
Another miraculous moment of truth between doctors, nurses and patients. I told her “I loved her and thank you," but I wasn't leaving without having chemo, and what did I have to do to make that happen?” She said, “you have to have a blood transfusion tomorrow and you must promise to get it done!” WHY WOULDN’T I??? We virtually shook on it. The next day, 2 more pints of blood were generously donated to me by the same two male nurses from last time. One said, “you gonna’ snore again today when we knock you out?” I almost hit him! I said, “I only snore when I'm on my back!" He laughed out loud! Omg- I was so humiliated, as I finished with, "Give me a pillow that I can hug while lying on my side!”An hour later I heard, “Robin, Robin,…wake up!” I woke uttering, “I was Not Snoring!” He said, “Turn over onto your back; your blood pressure dropped to 64 over 32!” Of course my retort was, “It serves you right for making me sleep on my side!”
I feel like I’m comin’ round the bend… heading towards the end… holding my breath with each weekly lab result, just praying they won’t stop me from having the treatment. To have no control over your own red-white counts is very frustrating! Each time I’m prevented from having the chemo they tack it on the end. It’s Enough already!
Now, I’m waiting for the next set of numbers to come in…talk about a roller coaster ride! One week my white count is crazy and the next week my red count is dropping to the floor. We are squeaking through to the end! I’ve got big circles on my calendar that show FIVE MORE WEEKS!!! I’m almost there!
I think I’ll have a surprise blog at the end! Something that will make you laugh and hopefully bring you back for more blog reading, if I wind up outside of that 15-20% success group and must continue with chemo. I’ll need to do something silly to hook you, just in case!I wanted to mention that my mom was just moved out of the ICU this week after 3 months and into a nursing home, but she’s still on a ventilator which leaves me unable to talk with her. I’m also not permitted to go see her, because the flu is running rampant in Pittsburgh. It's a difficult time, for sure.… and finally, my best friend who was hospitalized 8 weeks ago after suffering from a stroke, is out and doing so much better; still has a long way to go, but he’s made it! He’s so friggin’ determined to be Superman, and I admire his tenacity! I’m glad to have him back, and it didn’t hurt, that I let him borrow my Cape! So what if it's pink? It's true! Real men DO wear pink (and they like it!)
This is a quickie! It's meant for every woman to see and every person that loves that woman to see! It's a gentle reminder before the New Year to please don't ignore any symptoms that your body might be trying to tell you. From migraines to unnecessary bleeding… to losing weight or feeling swollen. We know our bodies better than anyone and I for one, care about you as do the people that love you.
This is my chart for a test called CA125. It measures the detection of cancer in your system- but it's also just an indicator that something is amiss, for instance where you see the higher number this just followed my surgery. As my doctor explained to me, all your insides were stirred up so we expect the number to go higher.
What I'm wanting you to see is the steady decline in that number which shows the chemo is working! I have a very positive attitude and my wish for the New Year is to keep that attitude!!! Plus throw in my humor like a staple, as I do!
Never be afraid to call me if you have questions, and we all know at this point in time- my gmail account was hacked into so I'm WAITING like a Good Girl for Google to give it BACK! You can reach me through FB for now.
Take a look! The lower the number the better!
I actually think I'm gonna' beat this!!! Nothin' up my sleeve? Presto!
This is a quickie! It's meant for every woman to see and every person that loves that woman to see! It's a gentle reminder before the New Year to please don't ignore any symptoms that your body might be trying to tell you. From migraines to unnecessary bleeding… to losing weight or feeling swollen. We know our bodies better than anyone and I for one, care about you as do the people that love you.
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