November 19, 2013

Working to Move Further Away from the Remnants of Cancer

I'm into my third week back at work. It's nice to be busy again. For the most part, I forget about the cancer except when my neuropathy shoots me a painful reminder in the foot or hand. I always dreamed of the day chemo ended when I was going through treatment. Just six months ago I saw myself at the completion of a long journey, being happy and resuming my pre-chemo life. Little did I know the chemo cocktail that was designed to cure my cancer, would also give me potential life long side effects. And so, my journey toward healing continues. Is it life threatening? No. Is it life altering? Yes. I was an active gal who is now being slowed down by more challenges. I want to believe I can overcome this obstacle as well, but when I need my guy to hook my bra strap every morning, it's a bit discouraging. 

Regardless, this was the week of two significant doctor appointments. One to see a neurologist and one to get my port removed.

On Monday the neurologist spent over an hour with me, reviewing symptoms, testing my hands, feet and legs. The bad news it the extent of my neuropathy is "quite significant" (my doctor's words). The worst part starts at my toes and covers my feet to my ankles. For example, during one of the tests I couldn't tell which direction she was moving my toes. To a lesser degree, the damage extends up to my knees. It is also prominent in my fingertips. For some reason the damage finds the nerves farthest from the brain, which is the feet, and then works it's way up the body. I also have damage in my finger tips because when my arms are at my side, my fingers are close to reaching my knees, thus making those nerves a considerable distance from the brain as well and a good place for the nerve damage to take up residence. I asked why I wasn't seeing any improvement since my last chemo and that is because the nerves only heal a millimeter at a time. The doctor said to measure my recovery in months not weeks. So, four months from now I should assess my improvement compared to today. The not so reassuring part was that the chemo patients she has had over the years generally saw only a 40-60% improvement in symptoms. Sorry, but I am ready to have a 95-100% improvement … so watch out shitty statistics, I'm gunning for ya!! 

The next step is trying to find the best way to work toward healing my nerve damage, which is a neuroconduction test and an EMG test. From what I understand (and you may want to review this link for accuracy because my second hand medical knowledge isn't always the most accurate), the neuroconduction test is electrodes that are hooked up to my body and electrify my nerves while measuring the results, thus learning the extent of the damage and where to focus treatment. The EMG test involves getting stabbed with needles all over the worst areas of my feet and hands, another way to narrow down the nerves that are damaged. Hmmm, getting electrocuted and stabbed… sounds like fun!  

I will also be starting physical therapy and occupational therapy. The importance of PT is to make sure I learn how to work with my newly numbed feet. I could easily hurt myself, so I need to develop techniques to stay safe and not cause any permanent damage to other parts of my body by falling or twisting joints. The OT is to learn how to work within the confines of my numbness by learning techniques for every day living, such as writing long hand and getting dressed (buttons, hooks, etc.). 

My favorite doctor appointment this week was getting my port out! The procedure was interesting. I had to go under anesthesia to have the port 'installed', but only had a local anesthetic to have the port removed. The worst part was the shot to numb the area, the rest I never felt.  I now have one less reminder of my torturous journey. An important step forward, as I work to move further away from the remnants of cancer.

Good bye old friend, you served me well.

the chemo port that was installed just above my right breast

The protective bandage is a bazillion times bigger than the incision to remove the port. 

October 23, 2013

Uncomfortably Numb

I am well into the second week with my personal trainer/physical therapist, Mike, in hopes of relieving the neuropathy in my feet and hands. I am almost afraid to say I think that perhaps my feet are 5% better than last week. My fingers seem to be getting worse though. Just typing this is a struggle as I keep having to go back and retype since my fingers are fumbling all over the keyboard! 

If you're not familiar with chemo induced neuropathy I've attached a list of the common symptoms. I can vouch for all these as I have personal experience with each and every one on the list. 

The symptoms or signs of CIPN (Chemotherapy Induced Peripheral Neuropathy) depend mostly on which nerves are involved.

The most common symptoms are:
  • Pain (may be there all the time or come and go, like shooting or stabbing pain)
  • Burning
  • Tingling (“pins and needles” feeling)
  • Loss of feeling (can be numbness or just less ability to sense pressure, touch, heat, or cold)
  • Trouble using your fingers to pick up or hold things; dropping things
  • Balance problems
  • Trouble with tripping or stumbling while walking
  • Pressure or temperature may hurt more than usual (mostly cold; this is called cold sensitivity)
  • Shrinking muscles
  • Muscle weakness
  • Trouble swallowing
  • Constipation
  • Trouble passing urine
  • Blood pressure changes
  • Decreased or no reflexes
CIPN (Chemotherapy Induced Peripheral Neuropathy) can cause severe pain and can affect your ability to do things like walk, write, button your shirt, or pick up a coin.

I'm working hard every day to try and increase circulation in my body to get the blood flowing. I have lost a lot of strength. And when I say a lot, I mean A LOT! I can barely lift a 2 pound weight with my arm extended in front of me. I can barely do half a squat because my legs are so achy. I struggle with patience and the fact that I have a very clear memory of where I left off with my work outs last March. This is a challenge both physically and mentally. 

As I mentioned a couple posts ago, my oncologist called it quits on my chemo because my white count was extremely low and because the numbness in my feet and hands kept intensifying even though he reduced the amount of 5FU in my previous treatment by 25%. I would tell all colon cancer chemo patients to take that numbness VERY seriously. Don't feel like you're a wimp if you complain about it getting worse - that is a red flag! I look back on conversations with my oncologist and wonder if I should have bitched more about the neuropathy. 

I was hoping to see a bigger improvement than I have so far. My goal was to go back to my 5 week oncology appointment with zero numbness, but I'm sure that won't be the case since things are moving so slow. Fastening a necklace or a bra strap are nearly impossible feats. Getting up in the middle of the night and not being able to feel your feet beneath you is scary. My writing looks like a 90 year old's script. But I'm not giving up. I will ask for extra help and be more methodical in my typing and writing. I'll keep plugging away with my PT, Mike, and continue to search for any little ounce of improvement and pray it all gets better in time. 

October 16, 2013

Lessons Learned During Cancer Treatment

The other day at breakfast, Greg asked me what I've learned from going through my cancer treatment. When cancer presented itself, my goal was to find "Zen" during my treatment, but I had yet to stop and really consider what I've learned. Maybe it's still too early in the process and my lesson has yet to present itself, you know, "hind sight is 20/20". I have to admit, I expected the heavens to part and some great epiphany to hit me at the end of chemotherapy. Well, that never happened. Now I feel like a dolt! 

So after the question was posed, I pondered for a while and know that I have learned some lessons touring chemotherapy. None of them grand by any means, but they are lessons I've stumbled upon nonetheless and might be helpful to others who are going through cancer treatment. Here they are ...

- Chemotherapy nurses are angels sent from God. Yep, they are intuitive, wise and immensely caring people. Honor and respect them always! And bringing them treats once in a while is a great idea too!

- You may feel like you're dying, but you'll be treated like a rock star. People will shower you with gifts, bend over backwards to help you out and give you oodles of encouragement. Take it all. Feel blessed. The love from others, however it's presented to you, is given to get you through this hell on earth. 

- Someone always has it worse. I learned this from my gracious guest bloggers. Cory, Ray, Tom and Belle. I applaud their wherewithal and courage. They have been dealt some hefty cancer cards and are embracing life in spite cancer. They are my heroes and I am proud to call them friends! 

- Don't be stubborn, seek help! I am fortunate enough to realize there are some issues in life that are too big for me to take on by myself. I am not Wonder Woman. Hence why I reached out to Imerman Angels and requested an earthly angel assistant. My wish was granted with Lee. She too is a gift sent from God. She is open and very responsive to all my questions. She pays attention to where I'm at in the chemo process and knows the right questions to ask. She has many helpful suggestions for dealing with aliments during treatment. And she's just an all around sweet person who I can call my angel and my friend! 

- Put it in low gear and keep it there. If you're a type A personality, like me, you'll have a hard time letting stuff go and operating at a snails pace during chemotherapy, but it is necessary! Most times you'll be forced into submission as your body will now allow you to do anything but be bed ridden. But when you get that rare feeling like you can get up and do something, just take it slow and don't over do it. REST as much as you can!

- It's OK to melt down. I had more than a few melt downs over the last six months. It's daunting to find out you have a disease that can end your life. It's also a tremendous physical and mental burden to take on chemotherapy! At some point you'll need to cleanse your heart and soul with tears so you can rid yourself of the negative thoughts and hopefully move toward the positive mindset you'll need to fight the battle of your life. Mind you, it IS a roller coaster ride ALL the way through treatment and even during the recovery stage. Just know it's OK to succumb to the anger and sadness once in a while so you can get it out of your system and move on to a better state of mind. 

- Kick your caregiver(s) out of the house. OK, not permanently, just for a few hours now and again. It is important to be cognizant of the toll chemo takes on those close to you. It took some minor meltdowns between Greg and I before we realized he needed to get out of the house so he could recharge. Seeing a loved one endure cancer treatment is very stressful. So Greg finally took in a few baseball games, some long bike rides and started hitting the gym again which I think was a big help. 

- Life is too important to be taken seriously. I look at some of the intense stuff that I've had to deal with over the past decade and wonder if I could have got through it in a less dramatic fashion? Some of it, probably not. Other issues that were less intense, probably so. Cancer has taught me that I need to lighten up. I tend to take some things too seriously. Am I there yet? Hell no. I am a work in progress. All I can do is be present in each moment and try to remember there are more important things in life. 
- Lighten up your load. (This may not be for everyone.) I had a lot of time to lay around and ponder my life during chemotherapy. I thought about some of the amazing experiences I've had with Greg since we reunited in 2010. I wouldn't trade those for anything. Then I got to looking at all the 'stuff' I've accumulated over the years. Stuff I now believe was purchased to fill a void in my past life. Recently I've started purging my stuff and it feels good. Every year I try to unload more and more until I can get down to the bare essentials and that is NOT easy. My new motto, clear the clutter and clear my mind! I want to lighten my load so I can put my energy (and cash flow) toward experiences. If nothing else, my goal is to go out of this life with my boots on! 

- The only people you need in life are the ones that need you in their life, even when you have nothing left to offer. I was warned that some of the people you thought for sure would be there for you and be supportive through chemotherapy are some times the ones that are quick to abandon you in your time of need. I really couldn't fathom that idea until it happened to me. However there is a flip side to this … there are people you never expected to step up and be uber supportive who do so in a heartbeat. I was blessed enough to be on the receiving end of that experience and for that I am grateful. This experience is how you find your true friends for life! 

- Spread an attitude of gratitude. I feel blessed that my stage 3 cancer was caught probably at the earliest possible moment that you can diagnose stage 3 cancer. If you recall, my doctors thought I just had some benign polyps to remove. Then when one was cancerous they thought we'll remove that section of the colon (due to my family history they wanted to treat aggressively) and then I'll be done with it. THEN when they removed lymph nodes along with the section of the colon, they found cancer in two of fifteen the lymph nodes! I am not a doctor, but to me that seems pretty damn early to catch a stage 3 cancer and I'm placing me bets that chemo knocked out any other rogue cancer cells floating around my body! I am grateful for my primary physician who all but walked me to the gastroenterologists office! I'm grateful for my surgeon, my gastroenterologist, my oncologist and all the caring nurses I met along the way. I'm grateful for family and friends who supported me, I'm grateful for my true love who put up with more than his fare share of Linda the last six months. The list goes on and on, but you get my point - PROCLAIM your gratitude to those who helped you and anyone around you who will listen. It's a great manifestation of positive energy! 

- Live life to the fullest every chance you get! You know the saying, "dance like no one is watching"? That is what I'm going for! You shouldn't give a shit what others think about how you choose to live your life. Wear your freak flag proudly! Do the things that bring you joy! I am pondering some changes in my life that I am sure will make many scratch their head and wonder why, but I don't give a rat's ass. I believe I was given the gift of more years on this planet and I don't want to squander them! Face it, whether you have cancer or not, everyone deserves to find their bliss! No get off the computer or smart phone and go uncover yours!

October 12, 2013

There is Always Good to Be Found Amidst the Bad.

The past three days I have been taking walks (per Oncologist's orders) to try and alleviate the numbness in my feet. I have also been exercising my hands for that same reason. It's been a week and I haven't noticed any difference. It's quite frustrating to feel constant numbness in my extremities. I can't begin to tell you how many times a day I trip or drop things. My hope is it won't be permanent, but that is an ugly truth I may need to come to terms with at some point. 
One of the routes I take on my daily walk in the park
I can also tell my blood count is still low. I still tire easily and still crave my midday nap! I have been reading on ways to get my white blood count up. I hate to go back to work with it low and get exposed to all the germs and sickness that seem to go along with an enclosed office environment. Getting sick is not something I care to deal with at this time - or anytime, really! 

I don't want to be a Debbie Downer, that is not my goal, so here is some positive news to off set the negative! My digestive system has regulated itself back to where it once was and I can now eat salads and fruits again! I'm currently eating lots of protein to get my red and white blood counts up and give me energy. I'm also working on eliminating sugar and refined carbs, which is never easy. It's a process and I'll eventually make it back to my healthier eating habits! Right now I'm just happy to have my salads back!!
Chicken taco lettuce wraps! I'm finally able to tolerate healthier foods! YAY!
The walks I'm taking at the park across the street are not only good for my body, I'm finding that they are good for my soul as well. The sweltering Florida humidity has left and the mornings have been simply perfect! Not to mention taking in ANY scenery that isn't my back yard is pretty nice at this point! 
My typical backyard view every morning...not too exciting!
Each morning I come across a great photographic moment or two. I will share a few below. I hope you enjoy them! xo

the morning dew
One of the many ponds at the park
Sunrise reflection on the lake

October 9, 2013

Chemotherapy Complete. Now the Road to Recovery Begins!

As I lick my wounds over the Rays loss to Boston last night, I remembered that I haven't updated my blog in a while. 

Monday was my Oncologist and chemo appointment. The good news is I'm done with chemo treatments! Yeah!! But don't get too excited. The bad news is my white blood count hit the floor again … it's waaaaaaay low. And even though they reduced my 5FU on my last chemo treatment to try and lessen the numbness in my feet and hands, it only got worse. Just typing this right now is a chore as I am continually missing keys and hitting wrong ones! However, I feel my feet are suffering the worst. I have a hard time standing from a sitting position because of the numbness and aches in my joints. It requires great concentration to be stable. Right now I look like an 85 year old woman hobbling around when I first stand up! So because a very low white blood count means my bone marrow is having a hard time rebuilding and leaves me susceptible to other serious issues AND because the neuropathy in my hands and feet can end up being permanent, the Oncologist said it would be best to stop at the 10 treatments rather than risk any more damage to my body.

My next course of action is to rest and begin the long rebuilding process. I have been exhausted and sleeping a lot lately.  I plan to return to work in the next three and a half weeks, so hopefully my blood counts are back up where they belong. My red count is still low too, which causes anemia, another reason why I'm napping all the time! In five weeks I go back to the Oncologist and he checks my blood work again. (I never thought to ask what happens if my white count remains low.) From that point on I see the Oncologist every three months for the next year. In year two I see the Oncologist every six months. By year five ALL the bodies cells will have turned over - which means that is the point I can find out if I am truly cancer free. I'll also have to get a yearly colonoscopy, I'm not sure for how long. So even though I'm done with chemo, I'm still not done dealing with all that goes along with becoming cancer free. Sure the doc has blood markers that will offer some indication as to whether the cancer may be coming back again. But like my Oncologist said, they can not "guarantee" anyone is cancer free after chemo, they can only make logical deductions based on years of research. I'm not saying this to be a downer, I am saying this because it is a reality of dealing with this disease. As you know by reading some of the guest blogger posts, cancer can come back when you don't expect it. I'd be lying if I said I'm not nervous to have my colonoscopy in the spring, I'm terrified! If you recall, this all started with what everyone believed to be a few small benign polyps … and here I sit today. 

Don't get me wrong, I'm happy I'm done. My exhaustion and other ailments are preventing me from jumping for joy at this point. I still have a long road to recovery ahead of me but at least I'm done with the chemo which has wreaked havoc on my body. There are many things I look forward to, I just need to be patient as it will be slow going! I look forward to my hair growing back, the rash on my body going away, losing the 20 lbs I gained during treatment, having energy to get to the gym and work out again, going out in public without fear of compromising my immune system, eating sushi, traveling and just living life to the fullest with my loved ones.

October 7, 2013

A Caregiver's Story by guest blogger Tom

Tom and I worked together when I lived in Michigan. He was sweet enough to reach out to me during my treatment with a beautiful letter and gifts to make my chemo treatments more tolerable. He shared some of Nancy's story with me and I thought it would be great for Tom to share his experience with everyone as I know it could benefit so many caregivers out there! 

Thank you, Tom, for sharing your story with us all! You're truly brave and generous for doing so! 
xo ~ Linda


At 2:30 AM on December 5th, 2011, my life changed forever. That was the morning my wife and best friend, Nancy died. As her principle care giver the previous year, I can relate somewhat to what others in this position may be going through. What follows is some of what I learned during her last year of life.
Nancy and Tom 

       First, let me tell you a little about Nancy. She was 65 years old when she died. She had a job she loved with Spectrum Health. She planned to work maybe one more year, and then we would really begin retirement together. We were married for just over 42 years. During that time we raised three handsome, intelligent boys who now have families of their own, and have blessed us with seven beautiful and healthy grandchildren. Now I knowNancy loved me very much. And I hope she knew I loved her with all my heart. But the love she had for those grandchildren is hard to put into words. Between 1999 and 2011 we took quite a few vacations and trips; but if it did not involve seeing a grandchild (or two or three), it wasn’t going to happen. She needed a “grandchild fix” on a regular basis.

       Her cancer was called CTCL—Cutaneous T-Cell Lymphoma, a rare form of skin cancer that resulted in making her life very difficult. The major problem was a constant itching over a large portion of her body. The last year of her life was excruciatingly painful. But in spite of what she was going through, she maintained a positive attitude. She never stopped fighting, and right to the end, she thought she would beat this terrible disease.

       Now for my part as a care giver, there was never any other option for me but to become that person, no matter how inexperienced I was. Fortunately I had retired in 2008, and was able to take this on as a full time job. I suppose your ability to care for someone is dependent on the severity of the disease. But I learned early the most important thing was to be there for her. It was that simple and yet that difficult all at the same time. And whether she was in the hospital or home, I still needed to be there. Sleep was a precious commodity. Often it didn’t happen at night, so any time I could get her to rest, I felt we were making progress. Her nutritional needs were reduced as the disease progressed. At one point due to radiation, she had a hard time swallowing. She was existing on Ensure and protein shakes that I made for her. But in the last ten months of her life, she lost more than 60 pounds.

       One characteristic of a good care giver is the ability to listen. She didn’t talk as much as she normally did, but when she did I thought it was very important to listen. We never talked about her funeral. That would be admitting defeat. We did talk about her condition, her doctors, her feelings and her fears. And of course we talked about her beloved grandchildren. At times she wanted to watch television. We did that together. Although in the evening, we realized our programming tastes differed and she would watch what she wanted on her set and I would watch a sporting event on mine. And that was okay for both of us. My point here is that at times you are going to need a break from the care giving routine. I may be only a few minutes or a couple of hours; or it may be a longer. It’s all right to rely on other people that want to help. One friend came on a semi-regular basis to do their nails together. You might feel like hell, but you should look good while you’re going through that as much as possible. But for her own reasons, Nancynever wanted to wear a wig. Two days before her first chemo treatment, she decided she wanted to have her head shaved. We went to Great Clips together and both had our heads shaved. One way of letting her know we were in this together.

       The best advice I can give care givers is to be there day or night, whenever you are needed. Stay positive as you listen to what your loved one needs. Are there going to be bad days? Count on it. Are you going to doubt your ability to do the job? Most likely (especially when it comes to keeping all the medications straight). But you can do it. You take it one day or one night at a time and do your best. That is all anyone can ask of you. And even when your patient gets down, you being there will make all the difference. I can honestly say that this disease brought us closer together. We above all tried to keep a sense of humor. I remember saying to her (and this was about the closest I got to not being positive): “What am I going to do without you?” Her reply was: “Oh, you will probably meet some young, sexy ‘chick’ to take care of you.”  And she just laughed when I asked her if she wanted to know who that person was going to be (like I had already picked somebody out for that role).

       If a brief summary would help, this is what I would say:

1.) Be there  Be at their bedside, at the doctor’s office, on any trips outside the home, wherever you are needed and with a positive attitude.

2.) Listen When the patient talks, when the nurse (oncology nurses are amazing) or doctor speaks, even when you get too many questions or suggestions from well-meaning friends. One other note—it sometimes helps when in a meeting with professionals to have a third set of ears, a son or daughter or a trusted friend, maybe one who is good at taking notes. Also listen to your “gut” reaction—if it doesn’t sound right, it probably isn’t.

3.) Take care of yourself   If you get feeling down or ill, you won’t be much help. Be willing to accept assistance and take a break from what has become your job. You will be better at it when you return.

4.) Document  Keep a calendar or a type of record of office visits, medications, changes with the patient’s routine, even take pictures for a record of changes, anything you think is significant. Remember that you are in charge of your health care. The doctor works for you. You need to have confidence in him or her, and if you don’t, then change doctors.

5.) Maintain a sense of humor whenever possible. Bad days can be eased by some humor. Treasure the good days; make a note of them and why they were good. A day without a smile is a long day.

       I hope this may have helped at least one person in this care giving position. If it has, that makes the effort it took to write this all worth it. Thank you, Linda, for asking me to contribute. You are in my thoughts and prayers.

September 27, 2013

Side Effects - Nearing the End of Treatment

As I round the corner to chemo #11 on October 7, I start pondering my recovery. I wish that the day after my last treatment that everything in my body will magically revert back to my old self (minus the cancer, of course). Unfortunately it will be months until I'm feeling like a non-chemo laden, positive, post cancer gal. The nasty chemo has done a number on my body. Now I know everyone has different reactions to chemotherapy as different cancers call for different types of chemo drugs. What I'm sharing today is MY reactions to my chemo treatments for colon cancer and how it affects me. You or your loved one's side effects may or may not be similar. 

I'll start with my feet/hands. One side effect that I had only one time was my feet swelling up like big o' sausages. The left foot was worse than the right. The doc prescribed something and it went down in about 3 days. The BIGGER issue with my feet is numbness - which also affects my fingers. This problem has been getting worse with each treatment. So much so that on treatment number 10 the oncologist reduced my 5FU by 25%. Sorry to say that didn't help and the numbness is only increasing. This side effect can last months, years or be permanent after chemo. It is one that the doctors try to monitor very closely. God forbid I lose more feeling. It's hard to be on my feet too long when they are numb and just typing this right now is awkward as I'm continually missing keys and have a pins and needles sensation in my finger tips. 
My sausage foot
Knees/weight/eating habits. My knees are puffed up and look like old lady knees. Actually my whole body is puffed up to the tune of 20 pounds thanks to the steroids in the chemo drugs. Finding food that agrees with your digestive system during chemo is not easy. I learned the hard way (days spend chained to the toilet) that I can't eat salads, fruits, veggies or too much coffee on certain days during treatment. My diet primarily consists of carbs (ugh). Easy to pack on 20 pounds with that diet!! Drinking fluids is uber important too! I learned that the hard way by getting dehydrated a few times. Gatorade is now a regular part of my day. 

Hair loss. This one is the worst in my opinion. I have always struggled with my crazy curly hair until a couple years ago when I found out about Keratin Treatments! Since then I've love my hair, only to lose it all with chemo. OK, I didn't lose ALL of it, but there are big patches of baldness all over my head and my hair is very thin and wirery.  
My patchy head of hair
Skin. Your skin gets awful during chemo! I have cellulite where I never had it or imagined I'd ever have it. My skin is dry all the time. Any cuts or sores take a long, long time to heal. I constantly have raggedy cuticles. Oh, and I have this charming rash that started on my arms and has moved to my chest and is slowly working it's way on to my face. It looks like chicken pox. This may or may not go away after treatment. This was not a side effect the chemo nurses or my doctor have seen before. 

Crazy rash

Muscles/joints. My knees joints and lower back ache a lot. Those have been problem areas for me in the past, so I'm guessing chemo amplifies any aches and pains in those areas. Getting in and out of my car, which may be a little on the low side, makes me feel like and 80 year old. 

Finger nails. Some people lose their finger nails during treatment and others have their finger nails go hog wild, growing like crazy. I got the grow like crazy nails. This would be great if I was allowed to get manicures and grow them long, but long nails hold germs under them so you gotta keep them short. And, manicures open you up for infections from even the most sterilized manicure tools. 

Stomach/Bowels. This one is not for those who get queasy, so if that is you, you may want to skip this paragraph. I believe it's important to be very transparent on what can happen to a body during chemo so here goes. As mentioned earlier your stomach will not tolerate certain foods. You'll need to learn to gage that on your own by trial and error. I use to have major constipation week one of chemo. By week two, I could be living on the toilet with diarrhea. And some days getting to the toilet in time was impossible. I'm not talking about a shart, folks. I'm talking about sneaky liquid poo that shoots out of your bun-hole without ANY warning. Its times like that when I was glad to be home on short term disability! Learning what I could eat and drink eventually helped me avoid problems, but it was a steep learning curve for a while.

Teeth/Nose and other orifices. During chemo your membranes get weak and tender. Usually the first week of chemo is the worst. I'd blown my nose and had bloody noses as a result. I'd brushed my teeth and my gums will bleed. I've even bled like a young, virginal girl after being intimate with my lover. You just never know when it will happen. You just need to take it easy on your orifices!

Brain. Ah, my favorite (she says sarcastically) … chemo brain. No it's not a cute phrase, it's an actual medical side effect of chemo. It's a lot like a slow-mo version of A.D.D. Your brain is foggy a lot. You forget the simplest things, sometimes mid sentence. Concentration for an extended period of time is difficult. You don't react as quickly. God forbid you needed to have a debate when you have chemo brain, it just wouldn't end pretty. 

Sleep. For many sleep may be difficult. As if the anxiety and stress of having cancer isn't enough, the steroids they pump in you during week one may have you up at night. In the beginning that was the case for me so they cut me back a bit and now when I'm at home with the portable pump I pretty much sleep constantly. 

I hope this didn't come across as a long diatribe of complaints. My goal is to help you glean some information that may help you or your loved one have an idea what to expect when it comes to side effects. If you ever have any problems, talk to your chemo nurse, they are amazing and so very helpful. They will likely have some tips and tricks to help you out. 

September 25, 2013

Mesothelioma Awareness Day - Important Info from the Mesothelioma Cancer Alliance

Mesothelioma is a cancer that you may not know much about. The only thing I know about Mesothelioma is from Greg's step father, Ray, who passed way from the disease about a decade ago. He supposedly developed the disease during his years in the Navy during Vietnam. 

When Emily, the Community Outreach Director for the cancer organization known as the Mesothelioma Cancer Alliance, asked if I could help her spread the word about the disease, I was more than happy to help! Mesothelioma Awareness Day was created to inform folks about this little known, but aggressive cancer. Emily asked that I share some important facts about the disease. She wrote this blog post titled, “8 Things You Should Know About Mesothelioma.”

Have a read ... remember knowledge is power!


Mesothelioma -- a long word you may have heard on a commercial or two, but do you know what it means? This rare and deadly cancer is sadly lacking awareness. In honor of Mesothelioma Awareness Day this September 26, read on for the top 8 things you don’t know about this cancer, but should. Then share them. The key to saving lives starts with education.

1. Mesothelioma is caused by asbestos exposure. Asbestos is a naturally occurring mineral that is invisible to the naked eye. Once inhaled, these fibers may infect the protective lining of the lungs, abdominal cavity, or cardiac cavity.
2. No amount of exposure is safe. Just exposing yourself once could put you at risk for developing the disease later on in life. If you were exposed today, you may not be aware until 2043, as the average latency period is about 30 – 40 years.
3. Asbestos was once used in more than 3,000 consumer products. These include household items, some of which may still be in use. Some of these even include hair dryers, crock pots, and cigarette filters.
4. It can be found in many older homes, schools, factories, and commercial buildings. Homes built prior to the 1970’s, along with a myriad of public buildings still could potentially contain asbestos because of the materials used in the original construction.
5. Asbestos exposure is still the LEADING CAUSE of occupational cancer in the US. Even after 30 years since the United States government issued stern warnings about the continued use of asbestos, many workers who were once exposed are now at risk of developing the disease.
6. United States Veterans are at the greatest risk. For many years, asbestos was used across all branches of the military. Many veterans and shipyard workers were exposed to high levels of asbestos from several different applications. US Navy veterans who served during World War II and the Korean Conflict unfortunately have the highest incidences of asbestos related disease, including mesothelioma.
7. Asbestos is still not banned in the US. Federal law requires the newly manufactured products contain no more than 1% asbestos. Although its use is regulated, roughly 30 million pounds are still being used each year.
8. Mesothelioma can be caused by secondary exposure. Family members of those who were directly affected by on-the-job asbestos exposure may also at risk of developing mesothelioma.
Want to do something to help this Mesothelioma Awareness Day? Our friend and 7 year survivor, Heather Von St. James, needs your help. Check out her campaign and share her message to help educate and save lives. Be a voice for the victims.

September 21, 2013

A Positive Attitude Can Kick Cancer's Ass!! By Guest Blogger: Cory

This chemo "cumulative effect" sucks! Now that I'm towards the end, I am more drained, more beat down with each additional treatment. Just getting out of bed to shower is exhausting. This is the point were I really have grown to appreciate how wonderful all my family and friends are for their compassion, support and help - especially at this point in the game!! It's great to know I have such tried and true friends out there who really care about me and reach out to me to offer their ongoing support ~ I LOVE YOU GUYS!! Thank you! xo

I want to thank Cory once again for doing more heavy lifting as I recoup from one of my last few chemo treatments. Even though I've never met Cory, I have  great admiration for his determination, strong will and exemplary attitude towards his treatment. You are amazing, Cory! I feel like a wimp in comparison! LOL :-)

Cory- we'll be anxiously awaiting an update after your October 1 surgery! As soon as you're up for it, please let us know all is well! I will be saying prayers for you and for you wife, wishing her a safe deployment in Afghanistan!! 


Guest blogger, Cory! 

Well, apparently someone out there likes how I write…or what I write. I was asked to do it again. I am not really sure what to write about to be honest, I have explained my views on Cancer and my disease and there isn’t much to elaborate on that. I see it in black and white terms. So, I will fill you in on my adventures.

Since we last spoke…or I wrote and you read, I have had some changes in my treatment plan. I went to MD Anderson and was seen there. The decision was made to remove the right lobe of my liver in order to take out the 3 tumors that decided to call it home. The liver is an amazing organ. I come from a medical background, but I never really paid much attention to the liver…I will admit to sleeping through that class. BUT, I have determined that the liver has got to be one of the greatest organs in the body. Of everything that goes on in the human machine, do you realize that the liver is the ONLY organ that can replicate itself…not only that, but it will do so in about 30 days. So on Oct 1, they will remove my right lobe, which is about 70% of my liver…the left lobe will grow and by 30 October, it will be back to full size and full operation….if everything goes as planned. That amazes me…of all the places to gets Mets, the liver is a pretty good one. I am looking forward to it actually…think about it…70% of your liver is gone…imagine how much you will save on liquor bills for those 30 days. So what happens after the surgery? Will, previously I told you that my first Oncologist basically said enjoy the year because it is all you will have. My second oncologist was a great guy, and never got excited or discouraged about what was happening with my body…very middle of the road. My third oncologist is still completing her fellowship so she hasn’t seen many patients like me. I have always known that I will beat the cancer, what choice do you have really? It took me 2 years to find a Surgical Oncologist who agreed with me. The basic plan after the surgery is to wait. Scans every 3 months…and see what happens. I have a couple of pesky nodes, but nothing dramatic and we will watch them. I haven’t made it to my 5 year survival mark, but I feel good…look damn good (at least my wife lies to me and tells me I do) and am positive.
So having said all that, I want to educate some of you on the US Military and what they do for their service members. They often times get a bad reputation and sometimes it is deserved. I served 12 years in the military in a special operations environment. I enjoyed it and got to see and do things people dream about. I married my wife who is active duty in the Air Force. My oldest son was born overseas on a military base, and my youngest son was born in the US on a military base. We are a military family and believe in what we have sacrificed in order to keep our country free. I was diagnosed with my Stage IV cancer in Germany after we had been assigned there for a year. Within 2 weeks of my diagnosis, the military had sent back to the US to start treatment. Took another 6 weeks for them to get my family here, but they took care of us along the way. I was treated in a military facility for the first 18 months of my cancer…and they did a couple of surgeries, my chemo and radiation treatment there. Every one of my providers has been great and I received great treatment…even when they left the sponge in me, I still don’t have bad things to say. The military then sent me to MD Anderson for a second opinion and they have picked up my case. So now the military pays for me to go to Houston for my appointments and my surgeries. They are allowing my wife to accompany me to Houston for surgery and assigning her there temporarily to care for me. We are incredibly grateful to the military for their treatment. They have definitely stepped up to the plate in taking care of the family. My wife just got orders for a 6 month deployment to Afghanistan. We talked it over, and even though we COULD play the cancer card and get her out of the deployment, it never crossed our mind to do it. We went to her commander, who is new and didn’t know about my condition and explained to him that the ONLY way she would get out of her deployment was if I had to go back on Chemo during that time. Deployments are a part of the job. I deployed when I was active duty, and now she will deploy. I am nervous…who wants their wife to deploy to a combat zone, but at the same time, I am proud. Proud of my wife for going, proud of my family for supporting her and proud of the military for doing all they do for us during this difficult time in our lives.
So, I have let you in on a little more about my life, why? Same reason as last time…If I can have Stage IV Colon Cancer (the second most deadliest cancer), and still deal with the other issues that face American military families today, you can change your attitude and realize, YOU CAN BEAT IT. You just keep going on with your life, live it, enjoy it…be normal. Cancer doesn’t define you….

September 20, 2013

Be Your Own Advocate! By Guest blogger: Sue

I apologize for being behind on my guest bloggers. It's been a whirlwind two weeks of low blood counts, denied chemo treatments and then finally getting chemo two weeks late, thus putting me behind my schedule of returning to my old self. It's frustrating to say the least. I should know better than to think I could make it through without a hiccup. 

Today's guest blogger is another high school buddy of mine, Sue. It's frightening to me how many of our classmates & their families have been touched directly by cancer. It is a great wake up call that we all need to continually contribute to the cause and finding a cure! It's also a great reminder that we need to keep ourselves healthy and take preventative measures. 

Thank you, Sue, for your beautiful and honest contribution below. 
I love ya, girlie!! xo

Sue's Bio:  Soon to be 50 year old ( really? how the heck did that happen?) wife of 26 years, and mother of 2 pretty cool kids. I am a Minnesotan at heart, but now live in the First State (Delaware for those who don't remember their history!)

So… Linda asked if I would step in as guest blogger for her next round of Chemo.  I’ve started and stopped, and started again, and here I am, watching NFL Redzone (best idea EVER) still not sure what I should write.  My first few attempts sounded like blah, blah, cancer, blah, blah, cancer.  So, now, I’ll keep this short. You all don’t need to know the in’s and out’s of my cancer journey, so I’ll just give you the basics.

I’ll start by saying that I have been cancer free for 8 years  I never thought I’d say that.  Since I was first diagnosed with breast cancer at 22, I have had several more cancerous and pre-cancerous breast tumors removed throughout my 20’s and 30’s.  Along the way I was also diagnosed with endometrial and colon cancer.  All before I was 40.
My life is proof that early diagnosis is key.  I want to take this opportunity to urge everyone of you to listen to your body, and if you don’t think something is right, and you aren’t getting the answers you need, YOU need to persist.  Get a 2nd opinion, push for additional testing, and never stop asking questions.  This is your life. I am an extremely introverted person, if I can push for additional testing and procedures, anyone can.  And those of us who have either had cancer ourselves, or have close family and friends that have battled cancer – speak up!  Awareness is so important.  Not many people know about my cancer, I didn’t want to worry anyone, didn’t want cancer to define who I am.  But, keeping this to myself doesn’t encourage others to get their screenings, seek additional help, or provide hope.  

Cancer sucks.  It has affected each and every one of us in some way or another.  We need to encourage each other, be there for our friends, our family, and take control of our own health.  Linda, in sharing her courageous cancer journey, has given us all a gift.  Unfortunately, it’s often not until we are faced with a devastating diagnosis that we are reminded how fragile life is.  Let’s use this gift and spread the importance of early diagnosis and treatment.  

Thanks Linda for sharing your journey!

Sue and her beautiful family 

September 17, 2013

More Delay

So I show up to my chemo clinic on Monday (yesterday) for my delayed round of chemo and guess what …. my white blood count hasn't budged one bit! Certain chemotherapy drugs can damage bone marrow. Bone marrow makes blood cells, which grow rapidly, making them very sensitive to the effects of chemotherapy. Chemotherapy kills many of the cells in your bone marrow, but the cells recover with time. The doc put me on Neupogen. It's a shot I'll get for the next three days. It's suppose to stimulate the production of granulocytes (a type of white blood cell). 

Apparently I have a few things going on with my blood work that are not good when it comes to chemo, however the low WBC is the one of most concern at this point. For those who like statistics here are a few from my blood work….

WBC should be 3.8-8.6 - mine is at 1.8 (1.85 a week ago!)
RBC should be 4.20-5.40 - mine is at 3.45 (up from 3.34 a week ago)
Platelets should be 140-440 - mine are at 93 (up from 86 a week ago)
Neutrophilis Absolute (# of each of the 5 white blood cells) should be 1.9-8.0 and 
        mine is at .41 (down from .85 a week ago)
Lymphocyte Absolute (% of the 5 WB cells in my body) should be 0.90-5.20 and    
        mine is at .68 (up from .59 a week ago)

So there you have it - the reasons I didn't get chemo on Monday! Now I go back for more blood work on Wednesday to see if the shots have helped. Then I meet with the doctor to discuss how to proceed. The only good thing with this delay is my ability to eat cold stuff (ice cream, shakes, etc) is back and I've been eating ice cream every day! Now if only I could eat sushi I'd be SUPER happy!! 
My favorite medicine!
It is times like this that I am ready to throw in the towel. I seriously believe if my white blood cells are almost dead - then wouldn't the cancer cells be dead too? 

It's hard when I had expectations that I would be done in October and back to work in November. Now I need to push it back two weeks… if it happens again, I'll be pushing it back even more. NOT what I wish to do! Especially since the last four are the worst thanks to the cumulative effects of chemo! Grrrr. I have my contingency of supporters telling me I can do this and I am strong, but I've given up almost this whole year to deal with cancer. It started April 4 with my colonoscopy and now it's almost October and I don't see the end any time soon, I just see more delays. At this point I'm not sure what I'll do except take it one day at a time. If I bail on the last couple chemos, then so be it. I've spent too much of my year on this and I want to start living again! 

September 11, 2013

Imerman Angels & Guest Angel Blogger, Lee!

On this day, September 11, it seems fitting that I have my NYC angel, Lee,  as a guest blogger. God bless all the men and women who lost their lives on 9-11. And God bless all of those fighting the battle against cancer. 

For those who do not know, Lee is my Imerman Angel. IA is a great non-profit that pairs cancer survivors with those battling cancer. They pair you on the same cancer type, surgeries you may have had, chemo treatments and even similar life/ family situations if possible. 

Although we don't correspond every day, I am extremely grateful for Lee and the support she has given me throughout my battle. We became fast friends! I am blessed to have her in my life.

Here is Lee's story on her bout with Colon Cancer and her thoughts on Imerman Angels! 


October 2011 - two bouts of terrible stomach pains landed me in the hospital, no diagnosis. After 3 weeks of testing, still no answer. I was scared but that was nothing in comparison to what I was about to be faced with.  Finally after my stomach calmed down, a colonoscopy was scheduled. When I opened my eyes, everyone had a blank stare. A polyp, the size of a golf ball, was found. Surgery was scheduled.  Biopsies revealed stage 3 colon cancer, and 6 of 26 lymph nodes removed during surgery had cancer cells in them.

I went directly to Memorial Sloan Kettering Cancer Center. I quickly started folfox 5, a 12 session chemotherapy. During my 6 months of chemo I kept a log of my daily ups and downs. Noting when side effects hit and what helped or what made them worse.

Thinking it through, what I needed during treatment was questions answered, no matter how small or silly they seemed, someone to lean on whose been through it all, and a friend that truly gets it. I knew others would have the same needs.

Three months after my last colon cancer treatment, my good friend, a lymphoma survivor, asked if I would get involved with Imerman Angels. I didn't hesitate, knowing how alone you are through treatment, even with many supporters.

I wanted to help anyone. I contacted Imerman and they recorded my profile and told me they may be in touch if there's  a match. Approximately 4 months later they reached out to me describing a woman with a very similar diagnosis and treatment regiment.  Not even 24 hours later Linda and I were connected.

We quickly bonded and oh what a feeling! It's incredible how 2 complete strangers can relate to each other. Cancer is such an awful thing so when you meet someone suffering as you did you just want to hold their hand.

It's such a blessing to have gone through something so horrific, and have something so positive come out of it.

Being an Angel gives me the opportunity to pay it forward. To help someone who is as scared as I was.  To assure them that they're not alone. They're surrounded by so many people that are routing for them. I want to let them know, this can be done.
Team Lee rallied at Cycle for Survival in honor of Lee! Here is Lee with one of her sons.

September 9, 2013

Expect the Unexpected

I went in for my chemo treatment today and was told my white blood counts were too low to get chemo. Something about affecting my bone marrow and other bad stuff I half heard. I was sent home and told to be extra cautious about getting around other people, especially those who are sick. Aside from an occasional walk in the park, I guess I'm a prisoner in my own home until next Monday. 

This week's motto, expect the unexpected. I really never expected to be sent home. Aside from being extraordinarily tired, I feel pretty good considering all my body had gone through. Yet here I sit at home watching the clock tick. Since I'm one who believes, everything happens for a reason, there has to be a good reason the universe wants me to sit this one out. So I'll suck up my tears of disappointment and listen.

September 3, 2013

Sick and Tired of Being Sick and Tired!

I am sick and tired of being sick and tired from cancer treatment. Even though I have three cycles of chemo to go, I've been feeling depressed. I know it's three chemo weeks of hell where I will be lucky to get out of bed. The cumulative effect sucks. It is harder and harder to get in that fighting mental state when you feel like you've been dragged behind a horse through the desert and you see no end in sight because of all the physical and mental trauma you've just been dragged through. 

I think depression is normal for any stage or type of cancer, how could it not? Most, not all, never see cancer coming. They are just going about living their lives with friends and family, enjoying activities, vacations, eating out, movies, and maybe working out … the list is long and varied. Then you get the call from the doctor, "You have cancer." Even after that call, you have no clue how much our life will turn upside down. The list of activities above are pretty much gone, thanks to chemo. Sure you can do some of them here and there, but they all come with a risk when you're going through chemo. I'll say it again, going from 100 MPH to zero MPH is enough to depress anyone. The imagine staying at zero for six months or more. Made you depressed just thinking of it, didn't I? 
Went from living life to the fullest at 100 MPH to zero and that is hard to manage 
without getting sad from time to time. (click on image to enlarge)
I did a little (and I mean VERY LITTLE) research online and the stuff I've seen is a joke. The majority of depression symptoms are also symptoms of CHEMO! Mind you, these are purely MY thoughts and opinions below. However, depression should be taken seriously if you believe you have it. I had postpartum depression after the birth of my third child and it was HELL. Once I thought I was good and started to go off my meds, my mother passed away, hence I stayed on my meds a while longer. So I am saying don't take some of my glib responses in purple too seriously if you REALLY DO believe you suffer from depression. Go to a doc and get it checked out regardless!

Major depression has specific symptoms that last longer than two weeks.  It's normal to feel sad after learning you have cancer, but a diagnose of depression depends on more than being unhappy. Symptoms of depression include the following:
  • Feeling sad most of the time. Well DUH! Who wouldn't be sad learning they have cancer! And again, going from 100 MPH to zero is sad. And thanks to social media you get to see all your family and friends out and about, enjoying life without you. I think you'd be sad too. 
  • Loss of pleasure and interest in activities you used to enjoy.  yep, true that … maybe it's because chemo is so restrictive and you're so damn tired most days when you can do "activities". 
  • Changes in eating and sleeping habits. Hmmm, sure have changes, again due to CHEMO. I can't eat certain foods and some days are to nauseous to want food. But the damn steroids bulk me up regardless AND I can't sleep. The last thing I want to do is put more meds inside me. 
  • Nervousness.  Who wouldn't be going through chemo? The doctors can't and won't give you a definitive that cancer will be gone when you're done with chemo. They can quote stats and that is about it. So we basically we go through chemo on a wing and a prayer, hoping the chemo gods shine down upon us and grant our wish, giving us decades of life cancer free. Instead we wait for that next colonoscopy to determine if we're healthy … at least for the time being. 
  • Slow physical and mental responses. Ironically that is a daily state for most chemo patients. You're whipped from treatment and you have chemo brain!
  • Unexplained tiredness. Oh, I can explain it. See my last response above ^ same deal.
  • Feeling worthless. When you lose your ability to live life "normally", of course you're going to feel worthless! But don't - you need to just be SELF-focused and HEAL! There is no place for pride when going through chemo. You TAKE help whenever you can… and take it if you're fortunate enough to get it, damn it!  You also have to "learn" to ASK for help. This is a hard one for an independent and stubborn gal like me. But you need to, otherwise you're not going to have time to focus on YOU. 
  • Feeling guilt for no reason.  Goes with the territory, don't you think? And for chemo patients I would think the believe it's not for 'no reason'. We all have thoughts like, "could I have prevented this?" 
  • Not being able to pay attention.  Go up four responses. Chemo brain! duh
  • Frequent thoughts of death or suicide.  I have to say death has crossed my mind A LOT. But if you have cancer it's natural. Self inflicted death or suicide? Not here, but I would imagine that those with a terminal diagnosis would consider that versus death by cancer. It's clearly personal and depends on the individual. 
So the ebb and flow of sadness will just have to be worked through. I'll try to meditate it off. Or make a batch of brownies and eat it away ... normally I would turn to Ben & Jerry's at a time like this, but some chemo drugs prevent you from eating or touching anything cold and I'm lucky enough to be on that drug.... ugh. Maybe a few easy yoga stretches. Or ART! 
I find that the addition of dark chocolate M&M's and dark chocolate chips help!