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. 

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!

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

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.

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 5^th, 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.