Chemo Brain

I am doing well. I no longer have to take anything other than Lyrica for my peripheral neuropathy foot and leg pain. The fatigue has lessened and I rarely need to nap during the day any more. With this clarity, though, another issue has come to my attention. Chemo Brain.

This is a real side effect of chemotherapy.

Definition

By Mayo Clinic Staff

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

So, I feel as dumb as a bag of hammers some days. Not always...but a lot of the time. It really sucks. As if peri-menopause didn't already mess with my head in the past few years...now this?!

So, on those days that I think, "Gee, wouldn't it be nice to collect a full paycheck again?", I realize that I could not go back to work. Not that I really want to anyway. As my life becomes more normal again, I have to remind myself of what I have been through and that I still need to give myself time to heal and to live a stress-free life-style to ensure a long remission period.

Some Myeloma patients consider themselves "cured" when they go into remission. I do feel victorious and am so, so pleased that I achieved a complete remission -- or complete absence of cancer -- after my stem cell transplant. The thing is that Multiple Myeloma does not get "cured". It goes to sleep - and sometimes for several years - but it will wake up again. So I feel that I am still battling cancer. Even though it is sleeping, I want to be as quiet as I can be so that I don't wake it up sooner. :)

When it does wake up, I have a whole slew of weapons ready in my arsenal. New ones are being added all the time. Of special significance is the work being done on virus therapy. This is really cool. Please take the time (43 minutes I think) to watch this video. If you, or a loved one is battling cancer, this should give you hope.

http://killingcancer.vice.com/?utm_source=vicenewsfb

Yogi and BooBoo

So...I was feeling great...pain was under control, fatigue was much, much better, and I wanted to do some exercise. I had gone to hot yoga about 3 years ago, and found that in my peri-menopausal state, a room at 105-110 degrees F was just not gonna work for me - yoga or no yoga...so I never went again. Two weeks ago I saw a Groupon for $60 for 60 days of hot yoga. With the frigid temperatures we have been having, I thought, why not give it a try again.

I loved it! I went Monday, Wednesday and Friday of that week. I drank extra water to replenish the buckets of sweat that left my body during my work-outs. I slept great and felt great. Until Saturday. Al and I went to the movies and I had popcorn, so after the movie I wasn't very hungry. We got some greasy yummies at a local pub -- wings, fried pickles, breaded mushrooms, etc... -- and I had a couple draught beers. Now 2 beers, does not do me in. I have can easily drink a Boston Pizza Schooner and still function quite normally, but these 2 beers made me feel quite light-headed. I mentionned it to Al when we got home, and an hour or so later I headed up to bed.

A couple hours later I awoke and my guts were roiling. Damn greasy food, I thought. Off to the loo I go. Once I started to "go" I started to feel sick to my stomach as well. During a "break in the action" I went to the bedroom to get the waste basket from my makeup vanity. Al just happened to be awake and he said I staggered out of the bathroom and did a header into the chair and table, landing in a heap on the floor...out cold. He got up and I shortly came around muttering about the need for a bucket. He asked me if I was drunk...LOL! I told him that I was sick.

I returned to bed and about 40 minutes later a awoke again with the same need for the loo. I remember putting the bucket on my lap as I was again feeling nauseated, and next thing I know Al is kneeling beside me on the bathroom floor. I guess he heard the THUD. I came around and headed back to bed again.

In the morning I felt fine...just tired, as one would expect after a night of stomach flu. I started to think about what had happened and why. I took my blood pressure. It is normally around 140/80 and it was 117/67. Yikes! I realized then what had happened.

The hot yoga had dehydrated me. The beer (alcohol) further dehydrated me and then the diarreah pushed my body over the edge. So dehydrated that my blood pressure dropped, I passed out.

I started to drink Powerade and water to replenish my fluids. I cancelled my Monday yoga class and continued to hydrate Monday and Tuesday. Wednesday I felt great, and went to yoga. I drank a Powerade an hour and a half before the class, and drank a litre of water during the class. I continued to hydrate the rest of the day. All was well...until Thursday morning.

When I got up to pee, I could hardly stand to be in the bathroom, the smell was so pungent. Yikes! Dehydrated again!!! Drink, drink, drink. I went to my monthly intravenous Pamidronate appointment at the hospital. They had trouble finding a vein because I was dehyrdated. They finally got one into my hand and about 2.5 hours into the 3 hour infusion, it popped through the vein and pumped the medicine into my hand.

Now I look beaten up. I was lucky not to have hit my head on either of my faints, but I have the remains of a big bruise on my upper arm where I hit the chair, I think. I also have bruises on my forearm and hand from the attempts to run the IV and my hand is still swollen and red from the interstitial iv.

The take away from all of this is that hot yoga is not for me! Obviously, I do not have the ability to replenish the fluids as necessary. I am going to continue with yoga...but not in the super-heated environment. :(

As you know, from reading this blog, simple, every-day activities often turn into adventures for me. I hope this one provided you with a laugh or two. Sorry if it was a little too detailed for your squeamish tummies. :)

Florida

I just got back from a trip to Florida with my husband. We had a great time! The weather was not hot, just lovely 70+. The sun was perfect when out of the wind and I enjoyed the pool! I also had a chance to visit with some old friends. Not old in years...just from long ago.

It amazes me that we can pick up and carry on after years and years as though it were a mere few weeks since we last spoke. Although I saw Sharon and Ken in November in St. Thomas, it had been over 30 years since I saw them before that. I had not seen Karen for 25 years before we re-connected. I also saw Missy on this trip and it has been 30+ years since I last saw her. So many memories of high-school !! LOL!!  I enjoyed my visit in St. Petersburg with Sharon, Ken, Karen and Missy and my new friends, Joe, Paul and Judy. (and the dogs... Roxie, Gator, Megan, Jacks and Boo)

We also ventured south to Sarasota and spent some quality time with Lori. She and I grew up across the street from each other and attended school together from kindergarten onwards. :)  Although we have seen each other over the years, it has often been 5 or 6 years between visits.

It is so relaxing to be with old friends. There is no pretense, no awkward silence, no lack of conversation topics. They just get you. And you get them.

It was also lovely to spend time alone with my honey. Since Mark moved back home, our empty nest life has been disrupted. Don't get me wrong, I love that he is home, but we were really comfortable with our life before he moved back in.  :) (He is moving out in the spring...yes...he is!!)

Al is not one to enjoy beach or pool time. Being fair-skinned and formerly red-haired, there is little that he enjoys about the sun. The weather was just right for him. not too hot and the shade was very comfortable. The only bad thing was that it was too early for Blue Jays spring training in Dunedin, so we will have re-evaluate when we go next year. Yes, he wants to go again next year!!  :)

While I am away I think very little about my illness. It is as if real-life is on hold. I wish I had a million dollars so I could travel and see the world and live in that utopia all the time. :) Don't we all?!

I need to start my bucket list. Not because I perceive the time to be short, (because I don't), but because I want to prioritize the myriad destinations I want to travel to. There are no guarantees with this illness, except that it will be back. I need to ensure that I do what I really want to do while I can. How many of us have parents that put off travel until retirement, only to have too many health problems to be able to do it. I don't want to be that person.

Just a short list of some of the places I would like to see, in no particular order:

• Tahiti and the Society Islands
• Australia
• Alaska
• Newfoundland
• California coast
• England, Scotland and Ireland

Better go buy myself a lottery ticket! :)

Weeding out my pain management options

January is the start of the winter blahs. This year was not so bad. I enjoy seeing the snow from the warmth and comfort of my house. :)  I am reluctant to venture out and walk because of the weakened vertebrae in my back due to the myeloma lesions. I don't want to risk a fall. Since I am such a klutz, it is a very real possibility.

My feet are much better. The plantar fasciitis resolved itself once I stopped going barefoot outside. This happens most years. It is a tendonitis that affects the bottom of your foot. This is why I wear the lovely, fashionable Birkenstocks or Mephisto sandals all the time. Actually, they are much nicer than they used to be and I will take the comfort over the glam when it comes to my feet.

The peripheral neuropathy is still an issue, but not nearly as bad as it was back in the fall. Back in September I was at my wits end with the foot and leg pains and 2 Lyrica each day just wasn't cutting it. My doctor prescribed Percocet and between that and sleeping pills I was getting through. I wanted to try something else. Something more natural. I asked him about medical marijuana. Yup...POT! My oncologist was not aware of the process or dosing protocols and would look into it if I really, really wanted him to. I told him not to worry about it. (I am too nice...I know.)

In any event, a few days later I was reading the local paper and what is on the front page, but an article about the Canadian Cannabis Clinic in St. Catharines! WHHHAAATTTT! The article talked about the reluctance of doctors to prescribe medical marijuana out of ignorance of the drug and the Health Canada process. The clinic offered free consultation (well, not really free...they bill OHIP for the doctor visit). I called and got my appointment.

After a long and involved written application process...not even close to the 65 second process the guy on The Fifth Estate went through in Vancouver...I met with the doctor and discussed my issues. Unable to sleep, stand for any length of time, or to walk any distance, I was at the end of my tether. I did not want to take Percocet (aka Oxy) each day as it is highly addictive. (Although one might say that someone with a fatal disease should not worry about that...LOL)

The doctor was just thrilled with the prospect of a legitimate medical issue on his doorstep. I guess they get a lot of questionable requests...not surprising! We discussed my situation and he advised me on how medical marijuana could help. My prescription was written and off  I went down to the hall to speak to the "broker".

The broker advised that there are 16 approved distributors of medical cannabis in Canada but only 4 had capacity to accept new patients. Hmmm...should that not tell us something?... He outlined the pros and cons of each of the 4 that I could choose from and I decided to go with the Tweed company. I loved their story. They bought the vacant Hershey factory in Smiths Falls and hired all the former Hershey employees. They are growing some of their pot in St. David's...which is very close to here, so I would be buying local. :)

I finally got through all the red tape and received my first order about 6 weeks after the application went in. I was excited to get it and when I opened the jar I nearly fell on the floor. This was not the pot of my teens! Pee-ewww! The skunky smell was vile! Apparently the pot of my youth was about 2 or 3% THC and the medical stuff is 10-20% THC. I fired up my vaporizer and gave it a shot.

It actually took a few times to get it just right -- the temperature of the vaporizer and the density of the herb in the bowl needed adjusting...but I figured it out. LOVE the internet!!! I still did not like the smell or the taste. I also don't really like to be high. I don't drink to excess and I drink beverages that taste good, so this was just bad all around. It did dull the pain (or perception of pain) and helped me to sleep but I really did not like the experience. (I know...I am the minority.)

Coincidentally, after using the pot for a few weeks, my pain subsided considerably. I am reluctant to attribute this to the use of the pot. I really don't think it was a factor, but it might have been. In the past, other symptoms I experienced spontaneously resolved themselves, so I think this was just a coincidence. Additionally, once I started my maintenance chemo, the fatigue was very significant, so I did not need anything to help me sleep. As such, the reasons behind my prescription had resolved themselves.

I discussed this with my cannabis doctor and he advised me of the availability of low THC and high CBD pot. This has all or more of the medicinal properties, including an unproven cancer-fighting angle, but without the high or euphoria induced by the THC. I have applied to a new distributor since TWEED did not offer this strain, and have not yet started on the new one yet.

Health Canada will not authorize the sale of canna-oil or canna-butter which is derived from marijuana and is necessary for cooking or baking. One would think that it would be preferable to smoking or vaporizing it, from a health stand-point, but HC obviously doesn't see this logic. I will be left to make my own if I decide to ingest my medication. Of course I could easily get this from non-authorized sources, but with law enforcement officers in my home, it is not a good idea. :(

I will say this...I wish I had it available during the month of nausea I endured in the summer. anyone just starting chemo should really consider getting approved and having it on hand as an option. Even my nurse suggested I procure a joint from someone...but because of the legality issues, I could not do that. Just as we keep Tylenol and Advil and some old T-3's on hand for whatever ails you, I will keep some pot on hand, just in case. (Not enough to warrant robbing me, BTW!!) :)

I will keep you posted on how this goes.

How was my Christmas?

I apologize that it  has been a while since I last wrote a post. I have been very busy!

Christmas was really great.

Last Christmas (2013)was difficult to enjoy as I was just starting chemo and did not realize until it was too late that the chemo lowered my blood pressure. Since I was still taking a high dose blood pressure medication, I was coming close to passing out all that day. Al made me a wonderful meal and I had to eat in spurts...retiring to the couch when I felt faint and then sneaking back for a few more bites of turkey and stuffing!

This past Christmas (2014) was so much nicer! Mark had worked the night shift and picked up his girlfriend, Rachelle, so we opened gifts when they got here and then we had a turkey dinner in the evening before they left to go back to work. Kaila and Mike called from Calgary to round out the family participation!

The smell of turkey cooking all day is amazing, isn't it?

One of my gifts was a 3000 piece jigsaw puzzle that I am STILL working on! LOL! I LOVE my jigsaw puzzles!!

I want all of my Christmases to really count. Every one will be special in some way.

December 2014

Wow! Here we are in December. Where has the time gone?! 

I began my first chemotherapy treatment on December 18th, 2013. Almost a year ago now. When I reflect on all that has happened in the past year I feel as though I am watching a movie...it does not seem real.

Did I really endure all of that? The severe fatigue, and steroid-induced manic periods along with debilitating brain fog of the first 4 months; the pain of the invasive diagnostic tests and preparatory procedures for the stem cell harvest and transplant; and the pain, fatigue and unrelenting nausea of the following 4 months...all are a distant memory. Much like the pain of childbirth fades with time, (the old way, without an epidural), so have the memories of the past year.

At this point in time, I can say that I really feel great. Of course this is relative...I feel great for periods of time each day. LOL! Generally I am good for a few hours of social activity...shopping or visiting with a friend. Suddenly I will be overcome with fatigue or nausea and I know it is time to rest again. I can live with this. In fact, I think that it is fantastic! Compared to how I was feeling and what I could be going through, it is wonderful and I am grateful.

I was originally signed off from work until January. There is no way that I can return to work at this time. Having cancer changes you in many ways, and for me, it is difficult to focus on a long term plan or project. I am okay for short periods of time, but I am nowhere near as organized as I once was. Some of it is the subconscious worry and despair that comes with a serious illness...but the biggest contributor is chemo fog or chemo brain. This is a real thing. Google it! The confusion, dulling of memory and some other cognitive abilities, can last a few months to several years. Since I am still taking chemo drugs, I have a ways to go before I am that sharp-witted, brilliant woman I once was. <She says with a wicked grin!> LOL!

Cancer affects not only the patient but everyone around them. I am sure that my story has affected you in some way. I cannot remember a time that my parents have ever worried so much or been so distraught...and that is something considering my dad has survived melanoma and is currently battling prostate cancer. My husband has put me first in his life - ahead of work!!! - and is more caring and loving than I could have imagined him to be. My kids have shown great maturity and grace in dealing with this challenging time. Our friends have been so supportive, and cautious, and silent at times. It is difficult when someone close to you is ill. You are forced to look at your own mortality and life style. It is very scary.

I have realized so many things over this past year: 

• I am stronger than I thought. 
• I am brave. 
• I have a great positive attitude. 
• People are kind. 
• Cancer is pervasive in our society today. Everyone is touched by it in some way. 
• Oncology units have wonderful doctors and nurses and support workers. 
• You will know you are in the cancer waiting room at the hospital because people are laughing and friendly and up-beat. Not like the grumps in the ER who are pissed that no-one has looked at their kid with a runny nose in 2 hours! 
• Life is precious.
• There is beauty in every day and every moment...you sometimes have to look a little harder to see it.
• I am blessed to have so many wonderful people in my life.
• It is a choice to be happy each day.
• A smile can make all the difference.
• When your taste is off, food and water are disgusting. And when your taste is back, it is heaven! 
• I have all I need.
• I want to see the world.
• I want to hug everyone.
• I accept my prognosis...and will make the absolute best of whatever time I have left on this earth. :)
• No one knows how much time they have so we should always be kind to each other.
• Everyone is battling a demon of some sort. We just may not know about it. Extend the benefit of doubt when someone is unkind. You don't know what is going on in their life.
• I love snorkeling.
• Being bald is fantastic in the summer when you have a pool!
• Curly hair is really cool.
• I love writing this blog...and connecting with all of you out there!

Thank you for being there for me. :)

St. Thomas, USVI

Out of the blue, my friend Karen from Florida, texted me and asked it I was able to travel. She had booked  a time-share for her boyfriend and herself and another for her parents. At the last minute her boyfriend realized he couldn't go. I only needed to pay my airfare and bring spending money for souvenirs and food. I checked the cost of flights out of Buffalo and since it was a mere $600 or so, I said YES!

It actually took a little convincing by my husband and my son to get me to go. I had just started the Revlimid chemo pills a few weeks before and they made me very tired. I did not want to be a "dud". I mentioned this to Karen and she said I was being silly. I could simply stay at the resort or stay in the room and sleep if I felt like it. Al and Mark pushed me to go...and I am so glad they did.

I had an amazing week. It was wonderful to see my old friend again -- this is only the third time in 30 years that we have seen each other -- and I loved visiting with her mom and dad as well. They were like my second parents when we were growing up.

We took a boat trip to the British Virgin Islands, saw the Baths at Virgin Gorda and snorkelled at Coqi Beach on St. Thomas and in the middle of the Caribbean in the BVI's. The beach at the resort was superb and we had many fabulous meals of fresh fish throughout the week.

It was quite relaxing as well. We were in our pj's and in bed most nights by 6 or 7 and asleep by 9 or 10. :) Exactly what I needed. Thank you Karen!!!