My Experience With Neuropathy

Chemotherapy can cause neuropathy which is nerve damage. It usually affects the hands and feet and may cause them to hurt, tingle, feel numb or weak and even cause an impaired sense of touch.

Some of the symptoms I’ve experienced include … burning, tingling, and prickling. I’ve had sharp shooting pain which kind of feels like an electrical shock ... and that's in both my hands and feet. 

I think it’s affected my walking because neuropathy can weaken muscles. In my case,  I had trouble with the arch of my  foot and had to go to the Chiropractor for him to stretch and strengthen my arch, foot and calves. I picked up some arch supports at the local grocery store which seems to help. Before seeing my Chiro, I used to have really bad feet, they felt like sticks with no feet and I used to flop my foot to the ground instead of stepping with the front of my foot and walking properly. Apparently, neuropathy can affect the reflexes in your feet and therefore can change the way you walk and for me … it did.

So how does neuropathy affect my life … well mostly, I don't feel solid on my feet. I have trouble picking up small objects and feel I’m just a bit clumsier … dropping things and such. I don’t have the strength to open jars, even the flip top to the ketchup container is uncomfortable to open. When I crack an egg and try to pull the shells apart, the pressure on my fingers is definitely felt, I’m very sensitive to heat … so I have to grab a pot holder to take plates out of the microwave and I have to be ever so careful when cutting or chopping food.. When I take my shower, hot water makes my feet burn so I have to turn the temperature down. At night I’m constantly flipping my feet around to find a comfy spot for my feet. The weight of the bed sheets puts pressure on my toes and if I have my feet flat on the bed, the pressure causes a burning sensation. The other night I woke up to burning feet … to get immediate relief, I sure wanted to go outside and run around in the snow but didn't … just ended up uncovering them to cool and waiting for the sensation to pass.

My biggest concern with my feet continues to be dryness and because I can’t feel any sort of pain from cracks in my skin … I do a visual check every day.

An Inspiring Cancer Video

Here is a 5:49 minute inspiring cancer video by Kris Carr of Crazy Sexy Cancer.

Gift From a Friend

My good friend Arlene crocheted this beautiful shawl for me. It`s so soft and cuddly ... I can`t even tell you.

A bit about Arlene... she has been like a big sister to me especially when it comes to my cancer journey. We met at the Cross Cancer Clinic back in 2000 when we were both going through chemo for breast cancer. It turned out our treatments were identical. She progressed through things just a bit ahead of me because my white blood cells wouldn’t recover in time for a 3-week rotation, so I had to wait four weeks between treatments. Because Arlene was ahead of me, she always gave me the scoop on what to expect next. I can’t tell you how helpful that was for me back then. And she has been great support through my reoccurrences too.

I’m glad to say Arlene is cancer free and doing real well.

Thanks Arlene for the wonderful shawl and for being my good friend.

Sears Coffee Group

Yesterday I had coffee with the ladies and what a treat it was. J just got back for her Mexican vacation and she brought back souvenirs for us all. S brought gifts too and she didn’t even go anywhere. A came with 6 copies of the pictures taken at our Christmas get-together... with these little gifts, it was like Christmas all over again.

We talked about a bit about... who had recent tests done, any new medications we were on ... just generally how everyone was doing. What I noticed and even mentioned to the group ... is that no one was complaining. We all seemed to agree ... we just have to make the best of the cards we are dealt. And you know what... after coffee was over; I walked out of there with a bit more bounce in my step.

Xeloda Toes Update

The splits on my big toes are nearly healed. Compare this to what they looked like ten days ago ... split open and bleeding.  I wrap them once a day each morning with gauze and a good dollop of cream then bandage.

Even with the twice daily moisturizing, the heals of my feet are still showing signs of drying and peeling skin. I’ve tried wrapping them with a variety of gauze, bandages and tape but it all seems to slip off during the day. At night it’s better because I put socks on and am off my feet. I may have to go back to the medical supply store to see what else they have to offer.

If you look at the picture of my beautiful feet ...  you will notice some brown spots developing. I have some small ones on my hands too. The Onc didn’t seem too concerned.

 My hands don’t seem to be affected by the seasonal dryness as my feet. I do notice some layers of skin peeling off so as a preventative measure I put tape on them ... especially my thumbs.

Breast Cancer Awareness Video

CT Scan Results Today

Just got back from the clinic and my CT scan results indicate things are stable. My liver has rotated a bit so the radiologist couldn’t take any measurements of my tumours but in his report, he said it didn’t look like there were any noticeable changes.

With regards to my lungs ... there appears to be a bit more fluid around them compared to the last scan. The Onc asked how my lungs were feeling. I said they are better than previous months. I still cough a bit and use the inhaler maybe one day in a cycle but overall I think it’s much better. She said we’ll just watch that then.

I mentioned the splits in my toes and she asked to see them ... fortunately, they are looking pretty good right now. She also asked to look at my hands and said they weren’t red so we can continue with the same dosage of Xeloda.

I mentioned to her that I had been occasionally seeing stars the last couple of weeks. She asked if they were dark spots and I said no ... they were stars with jagged edges like in a kaleidoscope. She did some visual tests and said if the problem persisted, we’d do a head scan after the next visit.

... so all in all a good report. I can breathe easy for three months ... until the next scan.

Got Out of the House

Yesterday I went to Super Store to stock up on Udder cream. I’m really going through a lot it so I picked up a tub and a jumbo tube. I’m now moisturizing my feet twice a day and they are feeling and looking so much better. I also drove over to a medical supply store to pick up some Kinesio Tex Tape ... I apply this tape on my hand and forearm to help move the lymphedema fluid out of my in my hand. I think its working.

I then asked the clerk what they had for dressing to apply to fingers and toes. She showed me a roll of tubular gauze. You just cut off the amount you need for your size of finger or toe and roll it on.

My daily moisturizing ritual is to put a big dollop of cream on gauze squares, put it on my big toe and then pull the tubular gauze on. A little medical tape to hold it in place and I’m good to go. Pretty slick.

Yesterdays Get Moving Session

Yesterday I went to the 'Get Moving’ session offered at the Cross Cancer Clinic. The three hour session included teleconferencing from the Tom Baker Clinic in Calgary. There were a variety of medical professionals speaking on the importance of physical activity as a part of cancer treatment ... and especially after treatment to return to a normal lifestyle. The message seemed to do something instead of nothing.

One of the more enjoyable parts was when Brian McGregor Founder of Cancervive who spoke about his survivor story. He was very entertaining ... and especially funny. Cancervive raises money to help support those living with cancer and surviving beyond cancer. They work closely with Calgary Wellspring, a support center for those living with cancer and their loved ones.

Wellspring is due to open a location in Edmonton and Brain said Cancervive is working with Edmonton to make that happen.

Full Day Ahead

I’ve got a couple of things planned for today so am posting early.

Last night I was at Costco and I’m excited to say that I picked up ... get ready for it ... Susan Boyles, I Dreamed A Dream.

Did I mention that I’m so excited when she sings? ... I get goose bumps!

Anyways, I think that will be all for now...

Local Information Session

When I was at the clinic last Tuesday, I picked up a pamphlet that told of an information session hosted by the clinic called GET MOVING! ... it’s geared for cancer patients, survivors, family members, medical professionals, fitness professionals and anyone who wants to learn more about the role of physical activity.

You can:

• hear the latest evidence

• get the latest advice on starting and staying active

• find out about the community resources available to you

Free of charge. No registration is required.

Hosted by the Culos-Reed Health and Wellness Lab and the University of Calgary.

This all goes tomorrow, Friday, January 22 from 1:00 pm to 4:00 pm at the Cross Cancer Institute, Zane Feldman Auditorium.

Xeloda Toe

Since the skin on my big toes suddenly cracked and bled, I’ve taken serious action ... I now moisturize my feet two times a day and wear socks 24/7. I pay special attention to my big toes by applying a bunch of lotion on to a piece of gauze and tape it on to my toes. I think the extra moisture and the protection that the gauge provides helps with healing.

It appears to be working because the cracks look like they are getting smaller... which is a great. I’ve also started wrapping up my thumbs as well because I noticed that a layer or two of skin peeled off in December. I’m hoping that by mega moisturizing them, I can prevent any cracking and repair some of the damage already done.

All my life I’ve had dry skin and my feet take a beating through winter. Usually I’ve had trouble with skin cracks appearing around my heals, so I haven’t paid much attention. But with being on Xeloda, I now know that frequent application of a moisturizer a must.

CT Scan Today

I went in for my CT scan 7:45 this morning … bright and early. This one’s a big deal for me ‘cause it’s my first scan since starting Xeloda. The nurse at the clinic remembered me from past scans and said … you need heat don’t you … meaning, I need heat on my veins to make them to pop for the IV. Well let me tell you, even with heat the nurse had to dig and dig to get that IV in. Ouch! They all like to go for the vein in my left forearm, the one that had six rounds of FEC chemo back in 2000. So this vein has already been used and abused. Anyways, I’m willing to put up with the grief because only the other option is to get a PICC line in again and I am not the least bit interested in that.

Once we got the IV in place, the nurse brought in my contrast cocktail. Only one jug instead of two … I asked her if that was right and she double checked and said yes … you’re only getting your abdomen and chest done. I guess since my last bone scan came back with no evidence of cancer; they took it off the list.

I was out of there at 8:35; I’ll have the results when I see my Onc next week.

My Medicine Bag

This past year and a half I’ve had quite the variety of side effects from my two chemotherapies. To help myself along, I purchased a little plastic organizer for all my cancer related medical stuff. I need to have someplace where I can keep things organized. The issue is I can’t remember where I placed this or that and I don’t have the patience to go look for it.

Probably the most important item in the container is my thermometer ... a must for every chemo patient. A normal temperature is paramount and I’d have to say everything else comes in a close second. To help prevent any chance of infection, I try to keep my stuff separate from Ds and don’t share... things like nail clippers, polysporin tubes and the Q-tip container. I regularly wipe things down with alcohol wipes to make sure it all stays as clean as possible.

I find this container is a perfect size and if I’m traveling, I just toss it in my carry-on. That way I pretty well know that I have everything I need.

More Xeloda Toe

Last night I applied lots of lotion on my two big toes, wrapped both with gauze and off to bed I went. This morning to my surprise, I woke to find the other big toe cracked. Now I have a matching pair....sweeeet. I’m a bit shocked because I thought I was doing the right things to prevent dryness and therefore the cracking of the skin. Well I think it’s all a bit more complicated than that. Yesterday when I looked at the bottom of my good big toe, I noticed that a top layer of skin had wore off, the cracked area was shiny but it certainly didn’t show signs of cracking by no means. So I’m not exactly sure why it cracked during the night...maybe... it’s the chaffing of the bed sheets combined with the weight of the blankets... I don’t know.

My first reaction was to jump on the web to see what others have said about their Xeloda Toe. Tho I found a few suggestions, none sounded real promising as they were more like helpful hints as opposed to solutions. So this is what I’m gonna do... lotion and socks to bed, not walking around barefooted, wearing leather sole shoes in the house and continue keeping my feet clean.

I just wanted to mention that even though it might look painful; these cracks don’t cause me any. Neuropathy is the reason why I really don’t feel much at all on the bottoms of my feet.

So this afternoon I’m off on a mission... to shop for some diabetic socks for bed and some comfortable shoes for around the house.

Big Toe Skin is Split and Bloody

Just after I got out of bed today, noticed an unusual feeling on the bottom of my big toe, right foot. When I looked at it ... there was a small bloody vertical split in the skin near the center of the pad ... and I have no idea how it happened.

I quickly cleaned up the wound and put a bandage on before D and I met my sister and mother for breakfast. When I came home, I soaked the toe in a solution of warm water and salt. Then, I applied Polysporin and wrapped it up in gauze. I also noticed my other big toe was looking like some of the layers of skin where peeling away so I put some lotion on and wrapped it too.

All along, I’ve been trying to figure out how it happened. We checked my inside of my socks and the bed sheets for signs of blood and found nothing.

I’ve come to the conclusion that I didn’t step on anything or kick anything....the skin on my big toe just split open. This is one of the documented side effects of Xeloda. All along I have been diligent about putting cream on my feet but looks like I need to do a visual underneath as well.

Attached is a bottom shot of my big toe ....

Knitting Group

Last night I had a rough sleep ... waking up often and with numerous bad dreams. Obviously I’m a bit anxious. I’m thinking it has to do with next week’s CT scan. Tonight I’ll definitely be taking an Ativan ... may even take half a pill this afternoon.

This morning I had my knitting group. I started the group still trying to recover from the bad night’s sleep but as time went on I started to feel a bit better. I think what was most helpful was when one facilitator sat down beside me to chat. We ended up talking about my cancer blog. Well I definitely perked then because I love to talk about my blog and how helpful it is for me to cope with my cancer. I love to share how much support fellow cancer bloggers have given me. We ended up talking a bit about her mother who had metastatic breast cancer and was given a poor prognosis ... she lived with that for 25 years before a new cancer came along. You know what ... I really needed that chat.

Sears Coffee Group

Yesterday our Sears group met for coffee. I always look forward to getting together with the ladies. Even when I was at my weakest, I still needed to get out and be with the gals. Yesterday everyone said I looked so good and was so energetic ... I told them I had put on some make-up ... and that always helps. It was nice to hear tho. Anyways, the talk includes getting caught up on any new news ... health wise or not. I returned the jam jars to Irm from our Christmas gift exchange...hint...hint. S brought some Farside books to share... figuring it was better that we get some comic relief than sit on her bookshelf. We really do connect well in this group.

I have to mention Ari, our mascot ... he also joins us at every meeting. He gets his own chair at the table. That way every passerby gives him a second look. At first glance ... they must think a person? baby? or animal? Sometimes they comment but most often they just smile. Yesterday I was playing with Ari a bit and put his hand behind his ear like he was trying to listen or pose for a hunky picture... it was pretty cute when the table noticed what I had done ... he is really fun to have around.

It was such a nice drive too. And right from the mall parking lot... I cranked up the music ... yesterday I felt a little bit country...

Susan G. Koman Joins Forces With The Canadian Breast Cancer Foundation

Personally, I’m very excited about this partnership because through collaboration these two organizations will be more effective in helping find a cure for cancer.

Here are some snippets taken from a news release found on the Canadian Breast Cancer Foundation website...

TORONTO and DALLAS – January 12, 2010 -Leading breast cancer organizations Canadian Breast Cancer Foundation in Canada and Susan G. Komen for the Cure® in the United States today announce a new agreement to raise funds and explore possibilities to partner in research, education, advocacy and awareness programs across borders.

About the Canadian Breast Cancer Foundation

The Canadian Breast Cancer Foundation was founded in 1986 by a group of volunteers and has become the leading national volunteer-based organization in Canada dedicated to creating a future without breast cancer.

About Susan G. Komen for the Cure

Komen was founded in 1982 by Nancy G. Brinker, who promised her dying sister, Susan G. Komen, that she would do everything she could to end breast cancer forever. Since then, Komen has grown to become the world’s leading breast cancer organization, investing almost $1.5 billion in research and community-based programs through a network of more than 120 community Affiliates in the United States, Europe and Puerto Rico. 

To read the complete article, follow this link … http://www.cbcf.org/en-US/About%20CBCF/Media%20Centre/News%20Releases/2010%20-%20Komen.aspx

Breast Cancer Surgery Video

Here is a four minute 3D animated medical video showing various surgical procedures to remove breast cancer lumps and tumors.

Lymphedema Appointment

I just got back from seeing the physiotherapist ... a follow up appointment for my lymphedema. After measuring up my arm and hand she said I had lost a lot of fluid ... a dramatic improvement she said. Now that’s what I like to hear... tho I continue to have too much fluid in my hand. The glove sewn for me four months ago is not as tight fitting as the sleeve and now it’s too big. She gave me a couple of loaner gloves to try out until I make up my mind on size. Then I’ll purchase a new one in a couple of months. Government Insurance here subsidises 50 % of the purchase of two gloves and sleeves per year.

In addition, the physiotherapist suggested that we should try something new in combination with the glove and sleeve to help massage the fluid out of my hand. She put this stretchy sticky tape that wraps around the base of my fingers and on up my forearm. She stretched it 25% as she applied it. This tape helps pump the fluid out of the hand area as I flex my wrist throughout the day. She gave me a couple of extras that I can apply myself. This tape can be purchased at medical supply stores and the bonus is ... I can take a shower with it. Just need to let it dry out before I put my sleeve and glove back on.

Good news ... all and all.

Burning Under Eyes

This morning I woke up with burning sensation under my eyes, right where the crust forms from the Sandman. What began as itching has turned to burning. I washed my whole face and put lotion in that area and felt relief real quick.

About a year ago, when I was getting a Taxotere infusion, one of the nurses and I discussed its side effects. She asked how my eyes were and I said runny. She asked if I felt any burning under the eyes like some of the patients were experiencing. Apparently the chemo was coming out via the tear ducts and burning the skin under the eyes. I couldn’t believe what I was hearing back then but I think that is what is happening to me now. I’ll discuss it with the Onc when I see her in a couple of weeks.

So Long to My Taxotere Nails

My new nails have grown in aprox 60% since getting off Taxotere. Now I’m anxious to get rid of the remaining fattened and discoloured portions. I haven’t had any real discomfort in my finger nails for a few months now ... until last week. They started to feel a tender in the nail bed so I thought I better soak them BURO-SOL Powder TCD. I just don’t want to get an infection this late in the game.

I believe my finger tips are a more sensitive because of the new nails are coming in flat but the existing nail has become bowed up cause of the build up of old nail cells underneath. This crumbles away as I trim the old nail as the new nail grows in. I know... it looks gross.

Here is a pic what the top edge of my nails look like.

Knitting Group

I signed up for a knitting group through the cancer clinic. It’s a drop in group so no pressure to be there or complete a particular project. You can even bring your own projects from home. The facilitators wanted something causal. Previously, they noticed that the knitters were so busy knitting and not talking or socializing with each other. With a more casual atmosphere, there should be more time to yak ....and boy’o boy did we yak.

It’s interesting to see how these groups bring people from all backgrounds and professions to one commonality ... cancer.

Btw, I started a funky scarf.

Out and About

Last night D and I went out with a few girlfriends, mine not his... the other husbands were busy. As we drove up to this new bar downtown, I said to D, let’s see if we can get lucky with a parking spot right in front ... well sure enough, one guy was just getting into his car to leave ... yippee, we did get lucky.

This particular bar was new in town and was offering a real good deal on hors d'oeuvres ... the wings were great. The bar was packed and it was nice to get out and experience a bit of the night life again.

August was the last time we were together and it was good to see the girls again. They all look so good. Two of them are long-time breast cancer survivors and are doing real well.

Still quite cold here. Thank goodness for our remote car starter; it sure came in handy at home time.

Getting in Some Exercise

Yesterday D and I went to the mall. The weather here is 10 degrees below normal... around the -20C (-4F) mark during the day. So the mall is the place to go to be Molly and Wally mall walker and get some exercise. We walked a good while and then stopped for coffee and cinnamon buns ... did some people watching... and finally off to our nice warm home.

I received an email that my Second Cup friend C was in the hospital ... stint issues ... so last night I went and visited her. She looks great, feels well and could be out any day. I’m sure hoping that happens sooner than later. Have I told you lately ... cancer sucks!

Itchy Eyes

One thing I’ve noticed since quitting Taxotere is that my eyes don’t water any more. They now feel puffy and itchy from the Xeloda. My nose is still a Kleenex hog tho. I had a full nose with Taxotere but this is different, it’s now runny as opposed to being full of mucus.

So last night I was rubbing my eyes quite a bit and decided to take some Benadryl before bed and it really took the itch out. Some nights I have trouble sleeping and I’m kinda thinkin’ it’s all got to do with my allergies. For a test, I’m going to change my Tide and Bounce to something else but for now Benadryl is my best buddy.

Yesterday at the clinic the nurse noted that I lost 1 kilo (2.2lbs) since my last weigh-in a month ago. I think I`ve got rid of some more body fluid. I`m happy with the weight loss, although I`m still up from when I started this whole deal a year and half ago.

Blood Work and Oncologist Visit

After having my blood work done up, I saw my Onc. My blood is normal which is no change from last time. The Onc said if she had noticed anything unusual, she`d request a CT scan pronto. So with that out of the way we will go with my scheduled scan on January 19th. This will be my first CT scan since starting Xeloda ... to be honest, I’m a bit nervous because this scan will tell us whether the Xeloda is working or not. I’d hate to have to switch to another chemo and its side effects.

My Onc questioned me on some of the potential side effects of Xeloda. Mouth sores, nope. Diarrhea, nope. She also asked about my about my fingers. Did I have any cracks ... I said no, but the tips on my thumbs were peeling and my finger tips were more sensitive. She asked if it was affecting my typing ... I said oh no!

It’s been four weeks since I’ve been to the clinic and it was a pleasure to be able to walk thru without having to sit and rest every so often. I really feel like a new person or maybe more like, the person I used to be.

Randy Pausch Inspires Graduates

This is 6:32 minute video of Professor Randy Pausch giving an inspirational speech to the Carnegie Mellon University Class of 2008 … at the Commencement ceremony.

Seems I Have More Energy

I can hardly believe it but on New Year’s Eve I actually stayed up till past midnight.... And with an abundance of finger food, chocolate and coffee I was a kind of worked up. This meant I was a bit more tired than normal on New Year’s Day. So last night I decided to take an Ativan before going to bed. I woke up this morning at around 8, feeling a bit groggy and headachy. I took 3 shots of Benadryl and one regular aspirin and then slept three more hours. Now I’m feeling good.

As far as my body goes, my calves are suppler and not as tight, allowing me to move around so much easier. My feet are still swollen a bit but they aren’t a huge issue right now. It’s a bit strange, but my other muscles are now sore ... like my thighs, like I’ve been doing squats or something. I think it’s just me being more active and working them.

I’m finding more energy to go do laundry. And now I can easily cook without the need of a chair in the kitchen. My motivation to do stuff is slowly coming back and my body is begrudgingly following suit.

Happy New Year!