All Revved Up!

 

My maintenance chemo drug is called Revlimid...or Rev, for short. It will likely double the time I will be in remission. It truly is a miracle drug for Multiple Myeloma patients...but it comes at a hefty cost.

It is free for relapsed Myeloma, but not for those using it for maintenance therapy. Luckily, the drug plan we are on picks up 80% and the drug company picks up the other 20% so we don't have to pay the $11,000.00 a month price tag. The financial cost, however, is not what I am going to talk about today.

The side effects of Relimid, or Lenalidomide, (the generic name) are varied from patient to patient. One website lists the most common side effects of Revlimid as: pneumonia, upper respiratory tract infection, urinary tract infection, neutropenia, thrombocytopenia, dizziness, dyspnea, headache, skin rash, weakness, epistaxis, fatigue, cough, anemia, nausea, edema, vomiting, muscle cramps, diarrhea, constipation, pruritus, arthralgia, insomnia, limb pain, pharyngitis, abdominal pain, dyspnea on exertion, back pain, peripheral edema, hypokalemia, nasopharyngitis, xeroderma, and anorexia. Other side effects include febrile neutropenia, chest pain, depression, leukopenia, pain, dysuria, palpitations, hypertension, myalgia, increased serum alanine aminotransferase, hypomagnesemia, rhinitis, peripheral neuropathy, loose stools, night sweats, upper abdominal pain, cellulitis, hypoesthesia, hypothyroidism, dysgeusia, erythema, xerostomia, diaphoresis, bruise, and ecchymoses.

I am not sure what many of these are...and I have pretty good grasp of the medical stuff...but I will say that I have a number of these. The most significant are fatigue, confusion (although not listed, it is likely one of those complex words in there), muscle cramps, diarrhea and peripheral neuropathy.

Fatigue is the BIG ONE. I have been so very tried these past few weeks. I generally plan out one outing or "event" per day at the most and will purposely schedule rest days before and after something BIG. It is working out pretty well for me so far. People do not see me as tired or sickly...I am always rested up when I see people. I am usually good for 4-5 hours and then I need a little rest.

It has been a little harder to get organized this year. Christmas has crept up on me. Although all my shopping and wrapping is done, I did not get out all the Christmas cards I had hoped to and some parcels were just sent last week!! I have not planned out my Christmas dinner menu and shopping and I have people dropping by on Sunday, and a big meal again on Monday as well. Yikes!!

My peripheral neuropathy is quite pronounced. This is nerve damage caused by previous cancer medications and then exacerbated by the Revlimid. It has become progressively worse, starting off as just tingling in my feet and calves. It then progressed to numbness, or a sleeping feeling. Pins and needles were next with extreme hot or cold sensations. Next came the pain. Sharp, stabbing pains in the feet and legs. Most days I just feel like I have sand in my socks, and at night I feel like someone is sticking pins into a voodoo doll's toes.

When I was on Velcade injections (Dec 2013-Apr 2014) they monitored for PN. They would ask me how it was going and I would downplay the severity because I knew that Velcade was the drug that would kill the myeloma cells and I did not want them to take me off of it. At the end of the 4 months it was still tolerable, but like a roast that is taken out of the oven to rest, it was still cooking.The stem cell transplant seemed to kick it into overdrive and by the fall of 2014 it was very bad. Then I started to take Revlimid and it has PN as a side effect as well. I manage the pain with 2 doses of Lyrica a day and sometimes percocet, sleeping pills, or medical cannibis at night.

I can walk a fair distance (although the arthritis in my feet has flared up as well) but I pay for it later with the pain that night. This has hampered my efforts to get more exercise... although, I admit I have not expended much energy in persuing alternative options. :) 

The diarrhea was an issue until I discovered a medication that helped immediately. The Rev causes your body to recognize your bile as poison. At some point in the day, when my body would begin some digestion process, usually in the evening, I would have severe abdominal cramps and then about 45 - 60 minutes of washroom time. It you have ever seen one of those stool charts -- I would start at the top and end with the water...all in one "sitting". LOL. Not pleasant and certainly hampered my ability to go out without investigating washroom options first. The Colestid works very well, but if I forget to take it, I have the issue that day again.

Forgetting to take my medication, or getting it all mixed up is an issue for me. I don't know if it is Chemo Brain (see a previous post on that), menopause, or the Revlimid that is causing it, but I tend to get confused and forgetful. I have a pill sorter and I have found that I have made some significant mistakes in filling it. I now double check and then check when I take my pills as well...although I have been known to look at them, verify that they are the right ones, and then later discover I actually took the wrong ones (ie:morning vs night). I started to get confused when I introduced the Colestid (for diarreah) as it has to be taken an hour before a meal and not within 1 or 4 hours of some of the other meds. With my fatigue causing me to sleep late many mornings, I am behind the 8 ball when I wake up. Maybe I need to set an alarm and take the morning pills at 8, then go back to sleep so I can take the Colestid when I get up.<sigh> 

I also put things away and then can't find them. It is very frustrating. I call myself "stupid" several times a day when I realize a mistake a made earlier when I was "foggy". The annoying thing is that I don't always recognize that I am in a fog until later when I try to remember what I did. Some days I just know that I am stunned. I will tell Al that I am stunned that day and he watches to make sure I don't do dumb things. LOL!! I have never done anything dangerous...and I don't drive if I am really tired or feel out of it at all.

The mental challenges affect my ability to multi-task or take on complex thinking tasks.I will often get the mail and stock-pile it until I feel able to deal with the opening, sorting and other actions associated with the bills and correspondence. It is the same with phone calls and other conversations. Sometimes I cannot find the word I am seeking or I lose track of my thoughts mid-sentence. Names of people sometimes escape me and I often repeat myself. At least I recognize it and admit to it...it is not severe...just an annoyance, but it can be frustrating and scary at times.

The muscle spams are another frustrating side effect of the Rev. I will reach for something and a muscle in my arm or had will go into spasm. Not for long...10-15 seconds maybe, but ouch! One night at dinner at The Keg, I was sitting in the back of the booth and my ham-string suddenly spasmed. I tried to straighten my leg under the table, grimacing and moaning at the same time and the waitress thought I was having a seizure I think. LOL. Again it did not last long, but yikes, did it hurt!  I take magnesium supplements, topical magnesium oil, and epsom salt baths to increase the level of magnesium in my body. It is helping.

All in all, these side effects are minor. They do affect my day to day activities somewhat, but I am alive and still in remission 19 months after my stem cell transplant! At the end of the day it is worth it! 

I hope this post did not come off as a litany of complaints...it is meant to educate and enlighten others on how this seemingly invisible disease impacts those who are fighting it.

Please have a wonderful Christmas and New Years. Be safe and happy. I love you all. Thanks for tuning in!! xo

 

the Starry Night Gala's shining star!

Friday, November 13th was the Starry Night Charity Gala for Wellspring Niagara. I managed to come home in the same pantyhose I left in and keep my gorgeous new shoes on all night!! :)

At my table was a woman who also has Multiple Myeloma. This was a treat since I don't really know anyone else that has it. Internet friends don't count in this case. We had a great conversation about how we got to this point and the side-effects of the Revlimid we are currently taking. It was wonderful to meet someone who really, truly understands. Where else can you meet someone and less than 2 hours later you are discussing diarreah! LOL!

It really hit home that although I am surrounded by people that love me and support me on this journey, I still feel alone at times. You all know someone who has had breast cancer, or prostate cancer...but how many people do you know with Multiple Myeloma? Not many, I would suspect.

I know that every cancer journey is unique and that just because someone has the same cancer does not mean your journey is the same. But knowing someone else with the same cancer makes you feel less alone.

I will be connecting with my new friend via Facebook and we will keep in touch. My new friend, Elisabeth, you have no idea how much it means to me that you came into my life. Thank you!!

And a big thank you to the universe for setting it all up!

Retirement...I'm just not ready...nice hair though!

                  

I have been off work for 2 years now. In November 2013, I had some leave available so I took that and applied for disability. Since EI (Employment Insurance) had already paid me earlier in the year when I was off with my tennis elbow surgeries, only a few weeks remained available. As such, I had a few months of no income.

My disability kicked in mid-February 2013. I receive 70% long term disability for 2 years.They have approved me beyond that date, at a reduced rate (66%), and require me to apply for CPP (Canada Pension Plan) Disability. This does not reduce my overall payment, just where I get the money from.

The monkey-wrench comes from the fact that my employer (Canada Revenue Agency) is asking me to state my intentions. In the past there have been many employees who were left alone while on sick leave and no-one bothered them for 3 or more years. I guess that environment no longer exists. They are within their rights to ask me about my intentions as we approach the 2 year mark. I don't blame them. Money is tight...and they want to either staff or dissolve the position. As an employee of 33 years, I am saddened. I thought I was more than another number. I thought that 33 years of dedicated service bought me something. I was fooling myself.

I attended a pre-retirement info session a month or so back. I realized after 3 days of being in a quasi-work environment, that I could not possibly return to work. Not only was I exhausted, but it was difficult to concentrate, my peripheral neuropathy was quite bad, and my blood pressure was very high. I conceded that medical retirement was the path I needed to take.

It is not an easy pill to swallow. I know that it is best. I know we can manage with the additional financial hit. I know it is something that I earned. I know....but it still hurts. It hurts that I spent 33 years in a public service job with the goal of freedom 55. At 55 I would have 35 years of service and have earned a full 70% pension. It was the goal of many newbies back in the early 80's. It was the payback for years of thankless, yet extremely important, work. Payback for the abuse hurled at me from the public who were caught smuggling, or just lying - because it's okay to do that at Customs, right? The abuse I took from co-workers when I surpassed them into jobs they thought they should get, but didn't earn. The abuse I took from the Union, who made it extremely personal, when I only wanted what was best for the majority of my employees. Payback for the unpaid hours and hours spent on getting the job done they way it needed to be done, not just the way it could get done in the time allotted. Payback for not being there for my kids when I worked the equivalent of 3 jobs at once until I burnt out...and they filled my position with 3 people. Payback for being fiscally responsible and not abusing the public coffers when it would have been easy to do. Payback for treating people fairly - even when they were assholes. Payback for letting others take credit for my hard work, and not complaining as it would make me look like the bad guy. Payback for years of working with, and for, misogynists, creeps, and incompetent people.

So, I will retire in the next few months. I have to get the CPP Disability sorted out before filing my papers at CRA. Don't need any glitches. I also have to pay back my pension contributions for the past 2 years that I was off. That will be a pretty penny!

Although I am sad that I have to throw in the towel 2 years short of my goal, I am so incredibly proud of my accomplishments. I started my career as a student Customs Inspector. I secured a permanent position and was really good at all the jobs I worked at over the years. I made some incredible changes and made the workplace better. People liked to work for me and with me. I liked to have some fun, but we also got the job done.

Recognition came in several forms, but one in particular changed my path. I had been asked to assist a Director's committee on budget reductions as a scribe. I have control issues (yah...really) and just took the ball and ran with it. I organized the project, kept everyone on task, and pulled the reports together for them. I contributed at a level they had not expected and when the final report went to the Regional Collector of Customs, they gave me the credit I deserved.

As an acknowledgement, the Collector requested that I be given an opportunity to act in a management position. I first heard about this when my manager and the new manager had a conversation in front of me about when I could start the new job. I had to interrupt and ask what they were talking about. That was when I learned I would be managing Customs at the largest in-land truck terminal in the country. Ummm...hmmm...did anyone ask if I was interested? I took the job. The orientation to my first management position was..."here is your inbox, your secretary will put your mail in it and let you know if you have meetings. I have to go." And he did. LOL!! Yikes! The advice I got from someone was to think of the managers you have had in the past. Emulate the good things and don't do the bad things. So, I did. And I was good at it. I remained in management positions for most of the rest of my career.

I am proud of the work I did and of the people I developed along the way. I saved a couple of lives...well, their jobs at the very least...but likely their lives too. I brought "people management" back into vogue. I was consultative, representative and collaborative whenever it was possible. I am so proud of my employees who were successful...like a mother is of her own children. I did lots of good and had lots of fun and many, many good years!

I know it is time to retire. It still hurts to say the words. I feel like I did not accomplish my goal. I suppose I will need to set a new one. :)

A message to the newly diagnosed

I am often approached by friends about the possibility of sharing my Blog with others. I have posted this on an open forum, so please, please, if you know someone who might benefit from reading it, please share.

Oftentimes, it is a situation where someone they know has been recently diagnosed and is struggling emotionally. It is difficult to comfort and counsel someone if you know nothing about how they might feel. I am so thankful to have had blogs to go to when I needed them, so I am honoured to be considered a place for people to go to when they need some help.

If you a newly diagnosed cancer (not necessarily multiple myeloma) patient, this is a good start. Reaching out to others who might understand how you are feeling helps to calm you and lessen that feeling that you are in this alone.

First, I don't like to refer to myself as a cancer patient. I am a WARRIOR. We are fighting a war. Each battle that we encounter is fought with everything we have in our arsenal. After each battle we rest, heal and strengthen in preparation for the next battle. Some of us will win the war. Some of us will battle to the death. An army does not curl up and give up after the loss of one battle. They regroup, consider lessons learned, and modify their strategy for the next time. It is that way with the cancer war as well.

New weapons of mass destruction are being developed all the time. I believe it is in your best interests to educate yourself fully on your disease and look at the research that is being done for future treatments. This not only provides you with a sense of control over what is happening to you, it empowers you to make decisions about your treatment and care, but also to make suggestions to your doctors. They cannot know everything about your cancer. They are always learning, but they are so busy caring for the patients they have, that they are sometimes behind a bit on the new stuff. You can research yourself and if you have a good oncologist with an open mind, you can work with them to try new things.

I suggest you go to some of the American (credible) sites and just see what is taking place in research for your particular type of cancer. One of the best sites I have found is www.PatientPower.info . This site contains lots of info but what I really like is the video library of snippets on specific topics taken from medical conferences. You are seeing real doctors and specialists speaking about a wide range of topics from how to deal with diarrhea to cutting edge clinical trials and drugs in research.

If you have Multiple Myeloma, you may like www.multiplemyeloma.blog . This one comes with a warning though. I have been following Pat Killingsworth's blog for a few years now and have gained so much knowledge about my disease, research, options, side effects, links, etc. Unfortunately, Pat, himself, has lost a few battles along the way. Most recently he is trying a "Hail Mary" tandem stem cell transplant to try to extend his life. All of us will one day be close to the end of our war and I find it inspiring and insightful to see how Pat is still rallying his troops and pulling new weapons out to fight each battle to the fullest. If you do go to his site, maybe go to the earlier posts first, or do some research via search or links. You may not be emotionally ready to jump into the posts of the past few months.

I do not discount the Canadian sites as sources of information. I find, though, that in the US, there are several large cancer research centres and speciality hospitals. They have a lot more money for research projects and share info on the clinical trials that they are running. As long as you understand that some of the trials available in the US are not available to Canadians, and that drugs coming into US mainstream treatment may not yet be approved for Canadian use, then there is no issue. Manage your expectations. If, however, you prefer a more practical approach, and want to know what is happening in Canada, right now...then stick to the Canadian sites. They offer a ton of info and support.

I wrote about Wellspring Niagara Cancer Support Centre in previous blog posts. I invite you to look back and review them. Just walking through the door of your local support centre will take a huge load off of your shoulders. If you are newly diagnosed, you have so many thoughts in your head, you cannot make sense of one. You have fears and concerns and questions that you cannot ask your spouse or loved ones. Been there, done that! Wellspring was there for me. They offer an ear to listen that has been in your shoes. (That is a strange visual image...LOL!) The volunteers have all been affected by cancer themselves and can relate to what you are feeling. Just knowing you can talk to someone about issues that would be too painful to discuss with your spouse or parents or children takes a huge weight off of you! It is a "must try" for all newly diagnosed cancer warriors. Please give it a shot!

Keep your sense of humour. Even if this is not a funny topic, you can lighten the load on yourself by finding some humour (sometimes quite dark) in your situation. Laugh as much as you can. Smile, even if you don't really feel like it at first...I guarantee it is infectious.

Start each day being thankful that you are still here to see the sun, clouds, rain and snow. Make an impact on someone else's life as well. When you go to the cancer clinic for treatment or tests, smile at the other patients. Engage them in conversation. They are fellow warriors in the same war.

If you like to write, start your own blog. If you are unsure, create it as a private blog, a diary or journal of sorts. You may find that you will decide to open it to the public after a time. Once you read others' blogs, you will feel more comfortable in sharing your own thoughts. The writing is therapeutic in and of itself.

Stay strong. Eat well and sleep or rest when you can. If you can, get some exercise. Do not forget to maintain your mental health as well. You need all the weapons you can find for this war. Keeping yourself strong is the most important. The fact that you are reading this tells me that you are already putting on your armour and readying yourself. Congratulations. You have already won the first battle. You did not roll over and wait for death after your diagnosis. You said "WTF...this is not over! I will win! I will beat this!" In the words of Dylan Thomas, Do not go gentle into that dark night!

 

 

 

 

 

 

 

 

 

 

 

 

Do Not Go Gentle Into That Good Night

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.
Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

By Dylan Thomas          

You Look Maaah-velous, Daaahling!

When people see me in person, as opposed to e-mail, phone, FaceBook or BlogPosts, they are usually  astounded by how good I look. I don’t mean that I am drop-dead gorgeous. LOL! I mean they are surprised that I do not look like the typical cancer patient. I am not gaunt, with haunted eyes and thinning hair. I am usually vibrant and “fluffy”, okay “pudgy” and I have a full head of dark curly hair. And I am happy!

When people ask me how I am, I tell them. In most cases I am GREAT! And I tell them so. Again, they always look surprised. So, if I am looking great and feeling great, why am I not back to work or back to doing all the things I did before? Well…I will tell you.

My standards have been lowered. My normal or base-line is not what it once was. If I can attend a luncheon, or visit with a friend for a few hours, or go out for dinner and drinks…that is fantastic and I am feeling great. I can usually only do one of those things in the span of 24 or 48 hours though.

The maintenance chemo drug that I take has some significant side effects. The main one is fatigue. I am careful to plan out my “engagements” so that I have the energy to be bright-eyed and bushy-tailed for the duration of my involvement. I will nap before going out or I will make sure I get extra sleep or rest for a few days before and after an event. This way, when you see me, you see me at the top of my game. I am so happy to see and interact with people that I am genuinely on a high when you see me.

Recently I went to my hometown, Port Elgin, for the weekend. I was very busy and really needed to pace myself. My big adventure was Saturday night so I made sure that Friday was a quiet day, and I tried to grab some rest on Saturday. I was out with friends on Friday night, but drank water and had only one beer. By 10:00 I was DONE! I knew if I kept going I would regret it. On Saturday, I slept in until 10:30 and took it easy with my many visits that day. I did need a little power rest in the afternoon before dinner. :) I had a beer with my meal and then drank water and/or coke for the rest of the night. I made it until 11:00 but I hit the wall and needed to go home. It was a great day…but a long and very, very tiring one.

I also have some hidden issues. I have peripheral neuropathy in my feet. This is nerve damage caused by Velcade (one of the drugs I was on during my 4 months of pre-stem cell harvest chemotherapy). Each week when I went to the hospital for my shot, they would ask about the neuropathy. I would tell them I had tingling…but I did not tell the when it got worse. They would have either cut back or taken me off Velcade, and I did not want that. I also knew that the longer I had symptoms, the more likely it was that I was going to have irreversible damage. We opt for the lesser of the two evils…

Anyways, my neuropathy had advanced to a point beyond tingling in my feet. I had constant cold sensation, and then I had constant burning, then I had pain. Sharp needle, or hot poker pains in my feet and lower legs. This got worse after the stem cell transplant and then got better for a bit. Once I started on Revlimid, though it came back again. I take Lyrica for nerve pain, twice a day, and it addresses the pain during the day when I am busy. The bad pain generally hits at night, or when I sit and put my feet up to rest. I guess I could just keep moving around to stave it off, but that does not really help for any period of time. I tried medical marihuana, but I did not like the feeling of being stoned, so I resort to taking Percocet from time to time. (No I will not get addicted!)

I also still have chemo brain. I wrote a post on that topic previously, so go back and take a look…but the long and short of it is that I sometimes can’t remember things, or lose y train of thought mid sentence, or just can’t concentrate. Some of it may be menopause…or old age (I am almost 53 after all) but a lot of it is chemo brain. The little things I would forget before my treatments are nothing compared to what I face now. As an example, I call my mom almost every day. I don’t use speed dial, I actually dial the number. More than once I have started to call her and could not remember her phone number. I had to look it up. I cannot remember my own phone number sometimes. Other times I am in the middle of a conversation and suddenly have no idea what we are talking about or cannot remember the name of the person I am talking to. Many of these incidents happen without anyone knowing, or catching on. But if I seem stunned at times…I am. And it is not my fault!

The stem cell procedure and the Revlimid also affects your GI tract. I have IBS already and this is much worse. I get sharp stabbing cramps in my belly each day and have bouts of painful bathroom adventures. This side effect makes it difficult to leave the house for any length of time without knowing well in advance of where the washrooms are. I learned about a medication that could help and printed the info for my oncologist. He seemed sceptical – he said my GI troubles were not a medical priority since I was not losing weight and becoming malnourished – it was just an annoyance.(That made me annoyed...) He must have looked it up though, since the pharmacy called the next day to say they had a prescription for me. FYI...I took 1/3 of the prescribed dose and it worked immediately! I forgot to take it yesterday and I was in agony!

My doctor’s attitude was frustrating, but in my “seeking to understand” I realized that in his world, if it wasn’t life threatening, it wasn’t really that important to him. My cancer was under control and the side effects were simply the price one pays for that. My new “normal” was one where I take the shortest route and wear sensible shoes, sometimes need a 3 hour naps every day for a week solid, deal with uncomfortable toilet issues, or becoming confused and forgetful and looking stupid. :) In the grand scheme of things…it really is a small price to pay.

When you see me and I look bright and vibrant and alive…and I tell you I feel great…I really do. But a lot of preparation has gone into that moment so that I do.  I know that I am not alone. Many of you have chronic pain issues, or depression, or other issues or ailments that impact you in ways that we cannot see. You hide it, and suck it up, and live with it, as I do.

Another reason to do what Ellen Degeneres says to do…”Be kind to one another”.

This HAIR!!

Many of you knew me BC - before cancer. I had straight blond hair.

 

Now I have very curly dark brown hair.

 

What happened??

 I was blond as a child.

 My natural hair colour has gotten darker over the years. With both pregnancies, my hair grew darker and darker. I have been highlighting my hair since I was a teen. I just like lighter hair. My hair had a little bit of a wave to it. If I scrunched it and let it air dry I had some beachy waves in it...but overall it was pretty straight. In my teens and early 20's I permed it to give it some body and curl.

Chemotherapy related hair loss occurs because chemotherapy targets all rapidly dividing cells—healthy cells as well as cancer cells. Hair follicles are some of the fastest-growing cells in the body so, as the chemo does its work against cancer cells, it also destroys your hair cells. Not all chemotherapy medications cause hair loss and not everyone experiences the same degree. My induction chemo (Dec 2013 - April 2014) only caused some thinning of my hair. I noticed it falling out in the shower, but I have such a healthy full head of hair to begin with that it was not noticeable. I was not to have any colour done so I cut my hair short right away to allow an easier transition away from the blond highlights.

I knew that the chemo I would receive prior to my stem cell harvest would likely cause complete hair loss and the chemo I would receive prior to the transplant would definitely do it in, so I chopped it shorter and shorter until it was buzzed for that first chemo infusion. Knowing it would be about 10-14 days before it actually fell out, I was ready and prepared. :) Once those little buzzies started to fall out, I shaved it all off. That was a difficult day (see my post from July).

  

Being completely bald was great! I tried the kerchief and wig route but it was itchy and hot and I realized I was doing it for everyone else and not for me. So for the most part, I just went bald! For many women, losing their hair is the most traumatic part of this journey. It was not that way for me. I chose to embrace the change. I loved not having to blow-dry and straighten...and shave my legs and pits!!

Once it started to grow in, it was soft as down feathers and very dark. It came in curly and then got curlier and curlier. I still find that it is a surprise some days when I look in the mirror!

 In many cases the hair follicles will be affected for 6-18 months after chemo ends. This can result in a different colour, texture or chemo curls. My chemo curls are still going strong...and my last chemo infusion was on May 21, 2014. I am getting used to it. I am letting it grow out so that it will end up in soft waves (hopefully). With my luck, it will just start looking nice and my hair follicles will start producing straight hair again. Arghh. This is why a lot of women keep their hair very short for a few years after treatment. Until the texture and colour is stable, it is just easier to wear a fashionable pixie cut! I may resort to that yet...

 



The Dark Shadow

This post may be a bit of a departure from the usual topic. It is about depression. Every one of you knows someone who suffers from this illness. You may even have it yourself or dealt with it at some time in the past. It can be an annoyance, a frustration or a total life interruption.

I was diagnosed with clinical depression about 20 years ago. There was no significant event that brought it on, and I was probably suffering for years before and just did not recognize it until it interrupted my life. I sat on my bed and started crying. I could not stop for over 3 hours. I went to my doctor the next day.

I have been on anti-depressants since then. Several times over the years I weaned myself off and thought I could just do it on my own. I always discovered that this was a bad idea after it was too late. Considering that anti-depressants take up to 6 weeks to work and several weeks to get out of your system, I set myself up for months of anguish each time I did that...for what? Pride? Fear of the stigma of having a mental health issue?

My depression is a chemical imbalance. There is a family history of depression. I should not be ashamed...and I am not, anymore.

I am infuriated when I hear someone say "go take a Prozac!". They have no idea how hurtful that is to someone who suffers from depression. Would they tell someone to "go shoot some insulin" or "take a shot of nitro". Of course not. Diabetes and Heart Disease are real ailments, right? Well, so is Depression!

Once I started taking medication, I realized that I had been depressed for years. My symptoms were not so much weepy, crying jags, but anger, lack of emotional connection to people, and the need to be alone. I would think about burrowing into the back of my closet and sitting there quietly for hours. I did not do it, as I had little kids then, but I thought about how wonderful that would be. I do remember sitting on my bed, staring at nothing and realizing that an hour had gone by in a blink of an eye.

For several years now I have accepted my diagnosis and have stopped trying to "get off the meds". I accept that this is a lifetime affliction. It is how I was made. Even though I am aware and take my medications, I still have times when I struggle. I tough it out and try to do things I know will help - like getting more rest, exercise and eating well. Dairy Queen works wonders too! :)

I would like to paint a picture for you. Imagine that you wake up and feel the presence of that dark shadow. You try to shake it off, but it remains. It follows you around and interferes with your life. It creeps into the tone of your voice and the expression on your face when you interact with others. They don't understand your inner struggle and make assumptions about your level of interest, or mood, or commitment to the task or conversation at hand. Their reactions make you feel worse...and the cycle begins. The dark shadow growing darker and larger. Laughing at your misfortune. You struggle to fix the mess you made and you come across as disingenuous. People stop calling. You are not fun anymore and they don't want to be around you. You sink deeper and deeper feeling more and more helpless and alone. This is depression.

With the life events of the past few years, no one can blame me for having some emotional struggles. Oncologists routinely prescribe anti-depressants to cancer patients as they know that living with this disease will bring you down. For the most part, I have been okay. I have a positive outlook and don't obsess about my future. Some days though, that shadow sits in the corner...slowly sashaying closer and closer. I feel my resolve crumbling a bit. I recognize it for what it is, though and throw things at it. :)  It usually only lasts a few days.

If you don't hear from me for a few days, or notice that I am not on Facebook or Candy Crush...I am likely just having a little low time...and will be myself again in a few days. Thank you for understanding.

If you have friends with depression, be kind and understanding. Try not to jump to conclusions. Give them the benefit of the doubt...they may be grappling with their own dark shadow and unable to give you the attention they would like to.

I am angry!

My boss sent me an email a few weeks ago and spoke to me today on the phone. An official letter is coming to ask me what my intentions are with respect to returning to work. Sigh. I am not ready for this.

I am only 52 years old. Why do I have to make a decision like this at this young age? It is hard. When you take a job with the federal government, (at least back in the day), you were signing up to be a life-long public servant. Not only is the job lucrative with respect to decent pay, great benefits and pension plan, but you get such a sense of pride in serving your country in this manner. I know that sounds hokey, but it really is true.

When I joined Customs and Excise in 1982, I was so proud to be part of a team of officers protecting our country's citizens and industry. You worked hard and rejoiced when terrorists were apprehended and heroin or cocaine was found, never to make it to the streets!

My focus was freedom 55. By age 55 I would have 35 years of service and could retire with a full pension. This was always the plan. (By the way, although it is a great pension plan, we contributed almost 10% of our pay to it...so any similar good investment would give you an equally great retirement package.) It is difficult now, at age 52 to throw in the towel. I feel like I am being cheated.

It is not my employer's fault. Any employee on 2 years of LWOP (Leave without pay) is asked to make a decision about continuing their employment and they either return to work or quit/retire. My 2 years is up in December. I have to make a decision then. This is not something I want to do. CANCER is making me do it. Cancer is winning another battle. NOT FAIR!

The first battle CANCER won was the day I had to shave my head. Leading up to that point, I had slowly cut my hair shorter and shorter. I did not want to see it falling out in handfuls, so I buzzed it shorter and shorter. ON MY TERMS and my timeline. My choice...not CANCER's. One day, my short little buzzy parts started falling out in patches. My hair was so dark that it was immediately obvious. I tried to put on a scarf or a wig. Both felt uncomfortable and I could feel my hair underneath. I went up to my bathroom and buzzed it all off. I came downstairs and curled up on Al's lap and cried my eyes out. I had no problem with losing my hair. I just wanted it to happen on my terms, not CANCER's. I felt that that was the first battle it had won.

It was also the first time I cried for myself and my fate.

It was also the last time.

 I feel I am in the same situation again. Could I return to work tomorrow. No. Of course not. Can I return in 6 months? Maybe. A very weak maybe. Am I ready to say that I can't work again? NO. I am not ready. I will be ready at some point, but not today. If I am forced to make this decision before I am ready, then CANCER will have won another battle. I have some thinking to do. Some analysis to do. Some conversations with my doctors in September. Some conversations with the Compensation and Pension folks at the Retirement Seminar in October. Then, maybe I will be ready to make a decision. On my terms. When I am ready.

CANCER takes so much from us. Free will is the most difficult thing to give up.

Fuck you, CANCER!

Fuck you!

30 Year Old Gifts

Where did the month of July go?? Zoom zoom, it is August already!

On July 20th Al and I celebrated our 30th wedding anniversary. We went to our favourite restaurant - The Keg - for dinner with our daughter, Kaila, our son Mark, and his girlfriend, Rachelle.

On July 25th we had an open-house party at our home and approximately 50 people attended. It was lovely to see so many of our old friends who travelled quite long distances to see us. A few of them actually attended the wedding!! LOL!

What is also amazing is that I still have, and use, some of my shower and wedding gifts to this day. We got a white cotton blanket from a gentleman Al worked with in Collingwood and we still use it today. It doesn't look as fresh and crisp as it did 30 years ago, but neither do we.

I have a set of plastic mixing bowls that my cousin gave me for a shower gift. I still use all three of them whenever I bake an apple pie. :)

My food processer is still going strong and can shred potatoes for latkes like no other! I got that from a friend who was married 2 weeks before me, and I caught the bouquet at her wedding!

My knife set is as sharp as ever and I always reach for that butcher knife first when I need to cut something up. My parents' neighbours gave us that. Their daughter was my maid of honor.

I am sure there are more gifts that we still use that have slipped my mind at the moment, and my intent was not to list them all, but to remind each other that a gift is a precious thing. Sometimes, we may find it easier to just put a gift card into an envelope and let the recipient chose something themselves. You know you won't make a mistake then. But there is something to be said about a gift that reminds you of the person each time you use it.

My mixing bowls are a great example. Just a "good" set of orange plastic bowls with lids. But when I pull them out to use them for making a pie or for chips or popcorn, I ALWAYS think..."Wow, I am still using these bowls that Cathy gave me." Then I remember how she lived with me in my apartment in Etobicoke for a short while when she first moved to the city. Her brother, Scott, also lived with me. I had a pull-out ottoman that he slept on. (Good thing he was skinny) and Cathy shared my double bed with me. :)  When I moved in with Al to our first marital home, they sub-let the apartment. It was in the same building that I lived in as a boarder with Carol and Brian. Carol's mom Marj, and my mom were besties. Then I think of all the fun times with Carol and Brian...and so it goes. A simple bowl set brings this much joy to my life.

Next time you are invited somewhere and need to take a gift. Think it through for a moment. Is there something that you could get them that will remind them of you and the good times you have had together? Something that will stand the test of time. It doesn't have to cost a lot. It just needs to be something that they will remember came from you.

Food for thought.

  

Thank you for your support

I am sitting in my backyard, enjoying the sunshine and a cool, beautiful breeze. I have been swimming in the pool and floating in my chair reading most of the afternoon. It is a wonderful world. :)

I realize at times like this just how lucky I am. I have a loving husband of almost 30 years, 2 self-sufficient, wonderful kids, and a plethora of family (parents, siblings, in-laws, cousins) and friends who are there for me whenever I need them. Some people battling serious health issues don't have that support. :(

I wonder sometimes how the elderly and the alone cope with a diagnosis of Multiple Myeloma. Most MM patients are in their 70's and 80's. It is often found after their bones have been ravaged by the disease and breaks occur. They are too old for some of the treatment options -- like Stem Cell Transplant. The chemotherapy and other MM fighting drugs have debilitating side-effects and can be very expensive. There are bouts of depression and helplessness. If they have no-one to help them through all of this, it must really be hell.

In addition, the one key weapon in a MM patient's arsenal is Knowledge! Doctors and MM support websites will tell you that those who are well-versed in what their disease means, and the treatments available to them now, and coming in the future, will live longer than those who chose to put their heads in the sand and just let what happens happen. You have to know what changes to be aware of in your body. New aches and pains, increased fatigue, or new symptoms may mean that you need your medications re-evaluated, or that your disease has awoken or has started to create new lesions. You have to know what treatments are being tested and how those trials are going so that you can sustain HOPE for a cure. If you don't have access to this knowledge, you are at such a disadvantage!

If you know someone who is ill and doesn't seem to have support for all of these things, please help them to find it. There are so many support agencies for cancer patients. They can help in so many ways.  (Refer to my May 17th blog posting on Wellspring Niagara.)

I get so much support from the internet (legit sites) and others' blogs, Facebook, writing my blog and getting e-mails about them, Wellpring Niagara services, visits from friends and family, cards, gifts, food, and Love...so much Love!! I am so very fortunate to have all of this in my life. Thank you - all of you...for being there for me and for reading my blog. I feel your love!! You truly do make a difference! XO

(I know it has been difficult to leave a message for me here. In the past, if you were not a Google+ subscriber you could not comment. I tried to adjust it so that anyone can comment but it is still not working.
You can always email me at lcampbell103@cogeco.ca)

Thunder Eggs

I have a dear friend at Wellspring that gave me a wonderful, beautiful gift. A Thunder Egg!

What the heck is a Thunder Egg?

Thunder Eggs or Thundereggs are 60 million year old agate-filled nodules found in various parts of the Western United States. They can range in size from 1/4 inch to as large as 5 feet in diameter. Generally, they are about the size of an orange. Although they are similar on their exterior, no two are alike in pattern, design or colour on the inside. Truly one of a kind!! Cut and polished Thundereggs are all truly beautiful. They are one of the marvels of nature and are sought after and highly prized the world over.

My friend Pat found some Thundereggs while rock-hounding (or whatever you call it) in the western US. He gave me a piece of his favourite one. :)  It is truly a cherished gift, and has so much more meaning than he intended. Let me explain.
I treasure my Thunderegg as it reminds me that although we are all made up of the same elements, we are each very unique and beautiful.

One of the great lessons I have learned throughout this cancer journey is that we do not always appreciate each other like we should. I believe that there is something magnificent in each and every one of us.

Sometimes we have to crack open the hard, gritty shell to see the beauty inside. Sometimes it takes a very long time or a traumatic event to open that shell, but until it does, know that there is beauty within - even if you cannot see it yet.

It reminds me of that adage...If you think you can - you will. If you think you can't - you won't. Believe that you are beautiful inside and it will shine through. If you perceive yourself to be a gritty old rock...that is what you will be seen as to others.

I used to complain a lot...and sometimes think the worst of people before I knew the whole story. I try not to do that anymore. I try to see the good and positive in people and events. It is so much more enjoyable to live that life!

I think of my Thunderegg and my friend Pat, and I Smile!


for more info on Thunder Eggs, see this excerpt from richardsonrockranch.com/story.htm:

According to legend, Thundereggs were so named by Native Americans of Central Oregon. The natives of this region are said to have believed these strange, agate-filled stones were missiles thrown by angry, fighting "Thunder Spirits" or "Gods" who dwelt on Mount Jefferson and nearby Mount Hood, two of the several snow-capped peaks high in the Cascade Range. The Native Americans thought when thunderstorms occurred these rival, jealous gods hurled large numbers of the round-shaped rocks at each other in furious anger. Thus, according to Native American legend, Thundereggs were scattered over the high plateaus of Central Oregon.


The unique agate-filled mud balls are found in layers of rhyolite lava flows, which spread over the land an estimated 60 million years ago. This was long before man appeared on the earth and thousands of centuries before the Cascade Mountain range was formed and pushed upward, due to tremendous stress beneath the surface of the planet. Geologists reason that the round-shaped Thundereggs were formed in gas pockets, serving as molds, that were left in the lava plows of the Eocene Geological Age. Over long periods of time, the gas cavities or cooled bubbles were gradually filled by water percolating through the porous rock formations, Water (hot or cold) oozing into the cavities carried rich quantities of silica (quartz). The solution lined and in many cases filled the cavity molds, first with the darker matrix material, then the inner core of agate or chalcedony. The beautiful and varying colors were derived from nearby minerals present in the soil. These processes are still going on, but at a much slower rate than during the times of volcanic action, with huge clouds and deposits of volcanic ash rich in silica (quartz).

A busy couple of weeks!

I have been a very busy girl!! I am just back from a week in Ottawa  Al is working up there for a few weeks and I decided to go up for part of it. I did the touristy thing and went shopping and to the Art Gallery and Museum of Canadian History. I watched an IMAX 3D film on the migration of the Monarch butterfly. We ate in the market, on Sparks St. and Elgin St.

One night we met Al's brother and family for dinner. It was nice to see them all together. We have a great niece expected in August, so it was especially nice to see everyone before the exhaustion of new parenthood, grandparenthood, and unclehood hits them! LOL! We had dinner with my brother one night, and were out with a group of Al's colleagues one night as well.

I met some of my work colleagues for lunch one day. It has been almost 2 years since I saw some of them. I am so glad not to be dealing with work stress right now. I miss the interaction with the people but I know that I would not do well in the current environment. Information Technology in the Federal Government is changing significantly. There is much anxiety amongst the staff (for good reason) and no answers about what the future holds. Not the best situation for someone in remission who is not wanting to wake the sleeping monster inside of her. :)

We stayed at the Lord Elgin Hotel and it was a super location for walking. I did a lot of it and seems like it is aggravating my peripheral neuropathy in my feet. I have said before how it is frustrating to feel good and want to do so much, but not being able to do it all. I still struggle with accepting that!

Overall, I feel good. I am back to needing a nap almost every day, but naps are not a bad thing. :)

My last check-up with Dr. Kouroukis at Juravinski went very well. I am still in complete remission. No sign of the cancer in my blood!! This is fantastic news. I am also tolerating the Revlimid well. This is the maintenance chemotherapy pill I am taking every day to prolong the remission period. Dr. K felt that with such a good response so far, I could expect a 4-5 year remission period!! That is fantastic news! If I did not go on the Rev, I would be looking at a 2 year period on average. When I come out of this remission, I will be able to have another stem cell transplant or try another protocol.

My overall goal would be to keep in fairly good health until a cure is found. There are so many trials on the go right  now, and many will be completed with drugs or treatment protocols coming into mainstream use in 8-10 years. I am confident that I can stick around for that time, since I have responded well to all the treatments I have received to date.   :) WooHoo!

The summer that wasn't

On May 22 it will be one year since my stem cell transplant. My immune system reboot. My rebirth. Wow!

In December 2013 I began the 4 month chemo treatment plan to prepare me for the stem cell harvest. Once my cancer had been beaten down through the CyBorD protocol (Cytoxan oral chemo (26 pills one day a week), Bortezomid or Velcade injections into my belly one day a week, and Dexamethasone steroids, 10 pills a day, 4 days on and 4 days off) I was given a day of high dose Cytoxan and then 9 days of injections (2) of Neupogen to tell my bone marrow to over produce blood cells.

 

In early May 2014, I had my stem cell collection. Enough for the first transplant and enough for a second transplant down the road. On May 21st I was given Melphalan chemotherapy. This kills your bone marrow so your body can no longer produce its own blood. On May 22 I was infused with my stem cells and it would take approximately 10 days for them to make their way to my bones, set up bone marrow production factories and start making new blood. Needless to say, you are quite ill during this time and 5% of patients do not survive this step.

 

Once my blood levels came up to a safe level, I was able to go home (2 weeks) and recuperate (another 3-4 months). After that you deal with overcoming the nasty side-effects that the chemo left behind.

 

When I reflect on the past year, I feel like I missed a lot of it. At the time I thought I would never forget how sick I felt, or the weakness, and the painful, debilitating side effects. It is hard to believe, but sometimes I have to remind myself that last year even happened.

I will think about a trip we took or something we purchased and I will refer to it as last year, when in fact it happened the year before. I have forgotten last summer. I spent it lying in bed with severe nausea for most of June, then July and August I spent a few hours a day sitting in the shade in the back yard, then sleeping the rest of the day away.

I am not sad or angry about the summer that wasn't...it was spent doing something very important. Healing. Rebuilding bone marrow and blood production. Kicking cancer's butt! It's hard work being a warrior.

Wellspring Niagara

I have mentioned Wellspring several times in my Facebook posts and my blog posts. I want to tell you what they are all about.

When I was diagnosed with Multiple Myeloma and was waiting for my treatment to start I felt lost. I tried to work, but was unable to focus. I was scared, confused and frustrated at the slow pace of medical care in Niagara. I needed someone to talk to that knew what I was going through. I had heard about Wellspring and had driven by it several times. One day I dropped in to get "more information". The volunteers were absolutely wonderful. They took me to a quiet room and explained what they do at Wellspring. I was impressed and felt like this was where I needed to be.

From the Wellspring website:

Wellspring Niagara first opened its doors in June 2001 with a mission to provide free social, emotional, psychological, informational and spiritual support to individuals living with cancer, their families and close supporters.

Wellspring Niagara fulfills the dream of Aldo Mantini, who lost his life to cancer at age 31.  Aldo had inspired many in his community to work together to bring the type of supportive care offered by Wellspring to Niagara.

Today the Wellspring Niagara centre offers a wide range of programs to men, women and children living through the Niagara region.

As a not-for-profit, charitable organization, Wellspring Niagara is supported by the community it serves. Every dollar raised in Niagara, supports Wellspring Niagara.

Wellspring is a small operation but provides so much! I cannot praise them enough about the services they provide, the care they give to the people who walk in their doors and the peace of mind they offer to their cancer warriors, survivors and caregivers.

Hooray for Wellspring!

Canadian Cancer Society conducts many fundraising events for cancer research and support of families affected by cancer. I do not want to detract from them, but if I were thinking of contributing to a charity to help people with cancer...I would give to a community run support centre like this one. All of the money goes to support the centre. The Reiki, Yoga, Look Good Feel Better, Men's Room and other services all are conducted by volunteers.

Doctors are there to help you with the physical part of the disease. The emotional toll it takes on the patient, their caregivers, and their families and friends is something that the medical system does not address. As you know the "attitude" of the patient is a key component to the quality of life and sometimes the length of life they enjoy...let's help out with that aspect!

Wellspring Niagara3-3250 Schmon Parkway, Unit #3
Thorold, Ontario L2V 4Y6
Tel: 905.684.7619  Fax: 905.684.1262

There are many ways in which you can support Wellspring, including:

• Donate Now
• Individual Gifts
• Giving in Memory of a loved one
• Giving in Honour of a friend or family member
• Special Occasion Program
• Matching Gifts
• Named Family Funds
• Corporate Sponsorship
• Planned Gifts

A quick Update

I have a few blog posts swimming around in my head, but I have had bronchitis again, (second time this year), and haven't had the energy to put pen to paper...or finger to keyboard.

I had a check-up last week in St. Catharines and I am still cancer-free. Yay!!

I have the capacity to fight off viruses and infections, as evidenced in my bronchitis battle in January, however with my compromised immune system, I am more susceptible to infections. When they reboot your immune system, as they did with my stem cell transplant, you no longer have any of the immunities you have built up over the years. As such, I will catch lots of bugs that I may have already dealt with prior to May 2014. :(

In another 6 months or so I may need to be tested to determine if I need to have booster vaccinations for the usual culprits -- Measles, Mumps and Rubella. It is not always necessary and I may still have immunity for the ones I have already had..ie mumps and chicken pox. Anyways, time will tell.

I am feeling better every week. My severe fatigue resolved itself in January as did the peripheral neuropathy pain in my feet. Unfortunately that is rearing its ugly head again. I will do a separate post on that.

I was feeling so great that I joined Goodlife Gym, started working out, very gently and with a goal of mobility and strength building. I promptly came down with bronchitis and sinusitis, so it has been on hold. <sigh> Story of my life, eh? Nothing goes smoothly!!

I am so very excited that spring is here. It is my favourite time of the year. It is a rebirth of the earth and a fresh start. I love the smells, sights and sounds. Another post on that topic will follow as well.

One last thing...if you have a chance to look into the immunotherapy research that is being done to treat cancer...I guarantee you will be blown away. In a previous post on Chemo Brain I attached a link to an HBO-Vice video that outlined the use of various viruses on different types of cancer, including measles vaccine for Multiple Myeloma. Al and I recently watched a similar piece on 60 minutes in which they speak about using the polio virus to treat brain tumours. Simply amazing! I am so hopeful that I can remain in remission long enough for all of this to be available in mainstream treatment so that I can have a real chance at a cure. :) <beaming smile> 

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! :)