September is Blood Cancer Awareness Month

September is Blood Cancer Awareness Month. 

Leukemia, Lymphoma, Hodgkin’s Disease, and Multiple Myeloma. Do these sound familiar? I am sure the first one and maybe the second one are known to you, but have you heard of Multiple Myeloma before I spoke to you about it? Probably not.

I had never heard of MM when I was diagnosed with it. I was initially diagnosed with a blood disorder called MGUS (Monoclonal Gammopathy of Undetermined Significance). WTF?? I was monitored for a year and my IGG levels slowly, but predictably, (per my excel spreadsheets and graphs), rose to the level of MM. Cancer!! Again, WTF?! I was 50 years old!!

MM is more common in men than women, people over 70, persons of colour, persons who have worked with chemicals for years. Not a 50 year old female paper pusher. Why me? There is no answer to that one. Luck of the draw!!

I finally accepted it and we started the battle. 4 months of induction chemotherapy to reduce the cancer in my bone marrow and blood as low as possible in preparation for harvesting my stem cells. 10 days before harvest a blast of high dose chemo and then 9 days of Neupogen to stimulate blood production. Day 10 was harvest. Hooked up to a centrifuge that removed the plasma cells from my blood as my blood was circulated throughout the day. 12 million stem cells produced and collected!! Enough for 2+ transplants.

They were frozen and a few weeks later I had Melphalan - a deadly chemotherapy drug that eradicates your bone marrow. (Bone marrow generates blood cells.) The next day my thawed stem cells were reintroducted into my bloodstream. It takes about 5 days for the chemo to kill the bone marrow and 10 for the stem cells to recreate your marrow and start making blood again. A very dangerous time. I was also feeling very ill.

100 days later, tests showed that my transplant was a success and my new blood was cancer free. Yay!!! But the battle was not over. I had a choice. Enjoy my life, get back to work and wait to see how long I rode this out before the inevitable relapse. No crystal ball but it was predicted to be about 2 years. The other choice was to start maintenance chemotherapy. A low dose chemo drug (pill) taken every day to keep the cancer at bay for a longer time. Predicted to be 5 years. Not enough empirical data to determine if there would be an impact on overall life expectancy, and the daily chemo has many side-effects. 

I decided to go with the maintenance. I figured that 5 years gave science time to find alternative therapies or maybe even a cure. I would take my chances. 

The Revlimid is very efficient at keeping my cancer at bay. It has been over 6 years since my transplant. The side-effects are debilitating at times. Fatigue, muscle spasms, peripheral neuropathy in my feet and hands, diarreah, chemo brain (confusion and memory issues). The drugs to treat the side effects have side effects of their own. Weight gain, more fatigue, confusion, tinnitus. But I am here. I am kicking cancer’s butt every single day!

When I was diagnosed there was a 4 year life expectancy. Now it is officially 5 but most people live 8-10. Some are living 15-20 years!!! I am 7 years post diagnosis. I have a great outlook and accept my limitations. I live my life to its fullest. 

I travel (pre-COVID), read, craft, write, and have seen my son, Mark, get married - and my daughter, Kaila, is having my first grandchild in a few weeks. These are things I never thought I would see. I have driven the coast of Southern California; hiked to the top of Diamond Head in Hawaii; snorkelled in the USVI’s and the BVI’s, Bermuda and Hawaii; soaked in the geothermal heated waters of Iceland’s Blue Lagoon, Banff’s Sulfur Mountain Hot Springs, BC’s Ainsworth’s Hot Spring and Collingwood’s Scandinavia Spa; watched Mark and Rachelle get engaged at Universal Studios Orlando; watched the sun set in Sedona; stayed at the Bellagio Hotel in Vegas; watched performances by Adele, Ed Sheeran, Elton John, Garth Brooks, and Carrie Underwood; and spent many a day with wonderful friends and family.

To look at me, you see a typical middle-aged woman. Inside there is a war on my blood. A chemical battle that ravages my organs, my digestive system, my thought processes. Most blood cancers are invisible. Most blood cancer warriors do not let you see the pain or the anxiety they are feeling. They want to be normal and live a normal life. Be aware. Understand blood cancer. Be supportive of your loved ones who are battling this disease. They look like they are doing great, but they might need patience, understanding, and they certainly don’t need judgement.

One of the most common complaints I see on the FB message boards is that family or friends feel that they are lazy and not pulling their weight. They do not understand why they cannot continue to work, care for home and family as they did before. They look the same (after their hair grows back). 

I feel that pressure too. Many days I do nothing. NOTHING. I rest and regenerate. I feel guilty. So I get up and do stuff. Too much. Then I crash. I am done for a few days. I can’t do what I used to do. If I look great...I probably had to work hard to look like that. 

If I have an event to go to I book nothing the day before and the day after as I must reserve my energy for that 3-4 hours that I need to be “present”. An “event” could be a dinner out at a restaurant with friends, or a neighbourhood BBQ, or a wedding or theatre production. They all take preparation, planning and rest. 

I am telling you this, only to educate - not to seek out your sympathies or your cudos. Just to educate. Increase awareness of blood cancer in September. Blood Cancer Awareness Month.

The End (my thoughts on preparing for it)

I am just back from British Columbia. I was visiting my sister in Squamish (between Whistler and Vancouver on the Sea-to-Sky Highway). It was nice to have my Mom, and both of my sisters together. It has been many years since we were in the same room/province! It will help all of us, and especially my Mom, to begin to heal from my Dad’s passing in August.

My Dad did not want any kind of service (funeral or celebration of life). We respected his wishes, but I believe it has made the grieving process so much harder on all of us. 

I never really understood what “closure” meant. It was not important to me to say goodbye to the deceased in person. I sent my thoughts out to the universe with the hope that it would get to where it was intended. 

There is something missing though, when you don’t have that get-together. The vehicle through which you can comfort one another, listen to memories and stories that bring you joy, and truly appreciate what this person meant to others - not just yourself. It brings “closure” to their life. It ties the bow on the package.

I don’t fault my Dad for his choice. I understand where he was coming from. I just think that if he knew how deeply he had touched people, and how much he was loved, and how that would provide comfort to us, he would have wanted that to be celebrated and shared with his loved ones. 

Until you experience the death of a close loved one, you cannot comprehend the impact it has on you. I am still numbed by the experiences of watching my mother-in-law and then my father suffer strokes and die slow (albeit peaceful) deaths. I needed something to provide the kick-start to the grieving process. I think this joining of the Paul Girls may do the trick. 

When you have an incurable cancer, like MM, you think a lot about death and dying. As I have written before, I will do all I can to keep my family from having to sit vigil for days watching me die. I will also make plans for a Celebration of Life for my family to experience the love, comfort and joy that it can bring. 

Even if you do not have an illness, you should think about your ultimate passing. Pre-plan and even pre-pay your funeral/cremation/interment. The peace of mind you will have and your family will have is worth it. I know what my task is for the new year...it is not a pleasant thought, but I think it is essential. It is unselfish to the extreme. 

DO NOT read this if you have recently lost a loved one.

I have not written in a long time.

2019 has been a heartbreaking year.
A busy year.
And a joyous year.

In January, my mother-in-law had a stroke and the heartbreaking decision was made to remove all life-extending measures. She would never recover and would remain on a feeding tube without the ability to speak or swallow or move her right side. Blood clots in her heart and a brain bleed meant that treating either of these conditions would cause death. So the feeding tube and the iv fluids were removed, and nine days after her stroke, she passed away.

The family gathered. All three of her children, four grandchildren, one great-grandchild and one on the way. It was wonderful to have her surrounded my all that love.

But it was awful. No one should have to go through that. Assisted suicide provides for someone to die with dignity. That is great...but current laws require the patient to be able to consent right up until the last minute. There is no provision for the person with power of attorney to make that decision.

So you sit with them and wait. You watch them slip away. Sleeping more and more soundly. Wasting away. Fighting for breath at times. Hours, days and sometimes it can take weeks. Yes...weeks. It is cruel and undignified.

It was a terrible experience that I would not wish upon anyone.

In August, my father had a stroke and my mom was faced with making that same awful decision. In his case, there were multiple pulmonary embolisms and brain bleeds. He would never speak, swallow or have use of his right side.

It took ten days. Fortunately (?!) for me, I knew what to expect. Unless someone is on a ventilator and cannot breath on their own, they do not simply die when support is removed. Many people don’t know that or understand that. I was able to explain the process to my mom and we maintained a vigil until the end.

I also had pneumonia. I was quite ill and I had to go home for a few days. My daughter and her boyfriend flew in from Calgary and this gave me a few days to rest and have my eyelid surgery that I was debating rescheduling. My mom was with him every day and was never alone. She was shocked by the process and wondered why anyone would have to go through such a terrible ordeal. I kept the nurses on top of the Dilaudid to ensure he was not in any distress, and to hopefully expedite the inevitable. It was awful. My mom will never get over it.

My kids saw their grandmother and their grandfather pass away in the most terrible way this year. They will be forever changed by it. I know that my own illness makes this even more difficult for them. I have assured them that they will not have to go through this with me.

I thought of this today as there was a notice on the Myeloma FB group that one of the patient advocates had reached the end and had relocated to Colorado to avail herself of the Death with Dignity provisions. I applaud her. It is the most unselfish thing that she can do for herself and her loved ones.

I don’t want to start a shit-storm of debate about the ethics of assisted suicide. I have my own opinion, and it is just that. MY opinion. I do not want to put my loved ones through 8, 10, 20 days of watching and waiting. I want to go out with a loving embrace and retelling of happy memories.

In any event, that decision will not need to be made for many more years. I am still killing this f’ing cancer beast...and don’t plan on changing that anytime soon.

2019 was not without Joy!!

The last few months have been a whirlwind of activity surrounding my son’s marriage. He and his wife are wonderful together and their service last week was filled with laughter and silliness and LOVE. That is what we focus on when we remember 2019. A happy wedding and loving union of Mark and Rachelle.

I am tired and the remainder of 2019 will not be quiet either. I am travelling to British Columbia with my mother next month and then Al and I are heading south to Arizona. We will celebrate his birthday in Sedona and then I will send him back home and I will stay for a visit with my BF, Shiela. A quiet, read-a-book-by-the-pool, vacation that I will sorely need by then.

I know we have all experienced loss. Many of us just this past year. I know it is hard. Let us all try to find some joy in our life to focus our thoughts on. Something to distract from the sadness and loss. Happy thoughts of vacations to come, impending weddings and births, birthdays, anniversaries, and LOVE.

Find your happy place, take a deep cleansing breath and think happy thoughts.

Ohhhhh, my aching feet!!

I can walk again!!! Yesterday I was hobbled. 

I have foot issues. I have decades-long issues with Morton’s Neuroma, plantar fasciitis, and arthritis.

The CIPN (chemotherapy-induced peripheral neuropathy) that has developed in the past 5.5 years has been my main focus...and I take 2, and sometimes 3, meds to address it best that I can.

Once that was under “control” I started to notice the intense pain of the arthritis in the top of both feet. X-rays and a consultation with the orthopaedic surgeon confirmed that there was really nothing that could be done, except wait for the joints to fuse. 😞 Cortisone injections work for short-term relief and I started having those.

A few weeks ago, I started to notice swelling in my left foot and pain in my big toe joint. Arghhhh!!!! I was due for another cortisone injection and the last one lasted about 6 months in my left foot and my right was still okay.

Thursday was the injection day. My foot was quite swollen and was very sore. Doc looked at it and told me I have a lot of arthritis in my big toe joint. Likely will need surgery to remove the calcification or to replace the joint. “Umm....remember I have cancer, Doc?”, “Oh, yah...likely can’t have the surgery.” 

So I had injections in the top of the foot and in the big toe. OMG. The injections hurt. Not a lot of “meat” there. Then after the freezing comes out you have a few days of painful swelling (in addition to the arthritic swelling) until the cortisone is absorbed and the tissues settle down. 

Yesterday was very painful and I was quite the sight to see. Lumbering along...with lots of moaning and whining.

Today it is so much better. I expect by Monday I will be dancing a jig!!! I think of the adage... “This too, shall pass.” 

Yes...there is always a rainbow after the storm. Just have to be patient and wait for it.

Happy Birthday to me! I am 5 today!!

When you have a stem cell transplant, they give you a high dose, lethal chemo drug called Melphalan the first day, then your stem cells the next day. 

The Melphalan destroys your bone marrow so your body has no way to make its own blood. It takes 5 days for it to completely kill off the bone marrow. 

It takes about 10 days for the stem cells to migrate through your blood stream to your large bones (hips, sternum) and regenerate bone marrow and begin making new blood cells.

 

The day you get your stem cells is referred to as your “re-birthday” or “new birthday”. Your life is taken away and then given back to you by infusing your stem cells. 

Today is my 5th re-birthday. I was told that if I took maintenance chemotherapy (a pill a day) after my transplant, I could get 5 years of remission. (Or more.) It has been a tough road, some days. Side effects of the chemo are severe for me...but it works. 

Here I am, 5 years later and I am still killing it!! 🙂

Happy Birthday to me!!

Beneath the surface...

Every 3 months for the past 4.5 years I have a check-up.

Actually it is more often than that since I have two oncologists. After my stem cell transplant I asked my blood cancer specialist to keep seeing me as I did not have faith in my general oncologist. He agreed and we have maintained that connection ever since. I really don’t need him now since my general oncologist changed and the new one is wonderful...and she regularly connects with the specialist, however, it is always good to have a specialist involved in your care. So, I see Dr. Salib every 3 months and Dr. Kouroukis every 4-6 months.

Before each check-up I stop breathing. It was not always this way. In the beginning, it was exciting to hear that I was still in remission and holding strong. After the stem cell transplant, I was told that provided I remained on daily maintenance chemo, I should expect 5 years before relapse. The first 3 years were easy. The fourth, not so much. Now I am at 5 years, and it is very scary. I hold my breath. I ask the universe to spare me. I overindulge in steak and pizza and ice cream. Until the check up and I get the all-clear again.

It is a rollercoaster of epic proportions. Right now I am buoyed by the good news I got last week...but  I am sensing the anxiety of the next check-up starting to build. I try not to worry. I try not to think about it. I try to live my life in the moment. For the most part I am successful at doing that. I have joy in my heart and am filled with gratitude for the gifts I have been given already in this 56 year life.

But floating beneath the skin is that little flutter in my chest.

Whirlwind winds down...

If you follow me on Facebook, you know that I have had a crazy, whirlwind, travel year.

It started in January (2018) with a trip to see our daughter in Calgary and take her, her boyfriend, and his son to Banff for the weekend to celebrate her 30th birthday.

In February and into March, Al and I fulfilled a bucket-list trip to Hawaii. We were on Oahu (Waikiki) for 6 days and then on Maui (Kihei) for 9 days. What a fabulous trip that was.

Over the summer we stayed put for the most part...enjoying our pool and visits with friends who had not seen us for months. :)

In September, Al and I drove to Nashville to fulfill Al's (un-confirmed) bucket-list adventure. It involved attending Music Row Happy Hour at Margaritaville. (This is Sirus XM's live broadcast of The Highway on Friday afternoons.) We enjoyed the fabulous vibe of Nashville and I found myself tapping my toes a few times - despite my slight dislike of country music.

When we returned, we rested a bit then drove out to our daughter's to help fix up her basement and do some of the "honey-do" stuff that needed her Dad's help and tools. We left there and drove through the US mid-west, stopping to visit Montana and South Dakota. Beautiful, big sky country!!

At the end of October, my daughter and I travelled to Iceland for a 5 day adventure. Beautiful, but strange, country with geysers, waterfalls, geo-thermal powered everything, and a penis museum. LOL!!

When offered a mom and son trip, my son decided he would rather do something with his girlfriend - and Al and I - of course. No offence taken... a mom and son trip can be a little awkward... so we went on a bucket-list trip for him. The Wizarding World of Harry Potter at Universal Studios in Orlando, Florida. At the archway into the park, he proposed and she said YES! So now we will have a wedding later this year. :)

Al and I just returned a week ago from Las Vegas. A well-deserved break following the massive stroke and subsequent passing of his Mom at the end of January. :(

~~~||~~~

It was a whirlwind year...and intentionally so. You see, I am 4.5 years into my remission following my stem cell transplant. The expectation is that I will get 5 years before the cancer starts to wake up and requires a different treatment. <sigh> That does not mean I plan to exit this planet anytime soon. It does mean that I would be on different meds. It will likely involve weekly hospital visits for injections or iv's. My current protocol of maintenance chemotherapy is a pill everyday and an iv infusion once every 3 months. I mange my side-effects and can travel pretty much anywhere I want.

The truth is: I got scared. I felt like my time was running out. I wanted to go places and do things and make memories with everyone. I was a little bit manic. I spent a lot of money, but I made the most wonderful memories!! The important thing is that I lived my life. I LIVED MY LIFE!!

This year, the whirlwind winds down. I will dial back the crazy - just a bit. I am going to Arizona in late April-early May with my college girlfriends; but that is the only adventure on the books right now. I have calmed the fear. I am content. I have had my mid-life crisis and we all survived.

I do advocate doing this though. If you have the means, just live full-throttle for a year. Do the things you want. Eat the delicious food, drink the fine wine, buy those fabulous shoes!! Indulge for a bit. Life is so short. Don't be one of those folks who say "one day I will..." and then die before they get the chance to do it. DO IT while you can.

Thanks for taking this journey with me. I love you all. Your support is what keeps me buoyed in rough waters. xo

Happy Birthday!

Today I am 56 years old. 6 years ago I was diagnosed with multiple myeloma, a rare blood/bone marrow cancer. It is treatable but incurable. At that time the average life expectancy was 3 years. Since then the ALE has increased to almost 5 years. Here I am, 6 years later and SLAYING it!! 

I have a great life. I travel and entertain. I do date night at least once a week. I binge watch great TV shows. I eat steak and pizza and ice cream whenever I want. 

I am surrounded by wonderful friends and family. (In person and virtually!)

I wake up every single day with a happiness and gratefulness that I did not have before. 

I wake up every single day. 

I am here. 

I am living my life to its fullest each and every day. 

Enjoy your life NOW. Be thankful for what you have and do not lament over what you don’t have. Life is a gift. Accept it graciously!

Sparkling

Well, I have had quite a journey of late. 

I started to “sparkle” quite often. 

Sparkle? This is the term I use for the pins-and-needles sensation I get sometimes. It is not just a tingle...it is like thousands of ants under your skin. Anyway...I like to say that I am sparkling...it just sounds nicer!! 

I remembered having this sensation when I have been dehyrated. Once I had heat stroke (remember that, Tanya B), and I have experienced it other times when I was quite dehyrated and close to passing out. (Well, I actually have passed out...)

So, this was occurring quite often this summer. It was very hot here in southwestern Ontario and very humid, so I attributed it to dehydration. I stayed indoors in the AC whenever possible and drank extra fluids, including those with electrolytes. 

After some routine blood work my GP called and said that my potassium was low and I needed to take SLO-K, a potassium supplement. Of course...it fit in with my self-diagnosis of dehydration!! So I started taking the SLO-K. I was still sparkling often (multiple times a day). I started to check my blood pressure. It was sometimes high and sometimes low...and not really predicable or attributable to anything in particular. I thought maybe my blood sugar was low. I bought a blood glucose meter and started to check my sugar levels. Normal, normal, normal. <sigh>

When I went to my GP he thought perhaps my blood pressure meds were not working properly (it was quite high when I saw him), so he switched them to another type. I started to take it and again, and my BP seemed to stabilize, but the sparkles just kept coming!!

On our return trip home from Nashville last month, I ate a burger that was a little pink in the middle and got food poisoning. I was quite ill for several hours and became so dehyrated that my muscles started to go into spasm. My hands cramped up like chicken feet, muscles in my neck, back and face started to spasm. I had difficulty speaking since my tongue was in full spasm. I was very scared and when Al woke up to my cries for help, he immediately called 911. The 4 handsome paramedics/firemen that arrived certainly raised my spirits, and I had exceptional service in the ER at the Indianapolis hospital. After some IV fluids, Zophran for nausea, and direction to take extra potassium, I felt better. We were able to drive home the next day. 

4 days later, still in bed and still quite ill, I decided that I needed to go back to the ER (in St. Catharines, this time). I was again given IV fluids, a vile potassium drink, and a potassium phosphate IV. My potassium, phosphate and calcium levels were depleted. I was instructed to double my calcium and potassium supplements. The ER doctor did not know what to do about the calcium deficiency as she did not want to upset my digestive system further. I was referred to the Acute Internal Medicine Unit the following week for consultation. 

By the time I went to the AIM Unit I was feeling much better and my potassium, phosphate and calcium were all within normal range again. What was interesting was that I looked up hypocalcemia (low calcium). The symptoms were clearly what I had been experiencing for months. Tingling in face and extremities, spasms of small muscles, feeling faint, confused, tired, etc. The doctor who saw me said the same thing. Classic symptoms of hypocalcemia.
So how did this happen? I take calcium and vitamin D supplements. Well...it seems that two of the drugs I take can cause mal-absorption of calcium. The colestid that I take for my chemo-related diarreah can cause it...well I am not stopping that!! The intravenous bisphosphanate I get every 3 or 4 months can also cause it. I am not stopping that either since it is helping my body fill in those bone lesions in my spine. So.. I take more calcium (double) and we will see what happens.

Since I started the extra calcium I have had very few sparkling episodes. Holy crap...who would have thought!?! We don’t think of calcium as something we might be lacking to the extent that it will cause such significant effects. If the ER doc had not noticed it in my blood work, I might still be dealing with those strange episodes. I expect that my next blood work check will show that it is back to normal.

What an ordeal. I am glad I finally figured it out. Sometimes the sound of horse hooves is a zebra.

The straight goods about my hair

After I lost my hair, it grew back very curly and very dark. I expected some changes, and chemo curls are very common. Some people have different coloured hair and others end up with a different texture. The changes generally last about 12-18 months and then your hair will often return to normal.

I was thrilled with my chemo curls. As a straight-haired girl, I always wanted to have some curls. When I was young I had perms to provide body and curl. As I got older, I just played with my curling or straightening irons and made the best of what I had. In more recent years I started to develop a little bit of wave in my hair...mostly noticeable if I let it dry naturally.

The curls I had after my hair grew back were certainly different than anything I could have imagined. Soft and bouncy curls!! I loved it!! I had a good run of about 3 years with it. About 8 months ago, I noticed that the new growth was significantly less curly. Each haircut left less and less of it and my last haircut took the curls away. I do have some wave in my hair still, but probably not much more than I had pre-cancer.

I miss my curls. Not enough to get a perm though... LOL!

Cancer does not just take from you...sometimes it gives you a little gift. This was one of them. :)

I'm back!!

So...I have not posted in a very long time. A lot has happened though, so I have some catching up to do!!

The short story is that I am doing well. My last check-ups showed that I am still in remission!! Yay!!!  I did have a little hiccup though.

As you know, I see 2 oncologists. One, (Dr. Mary Salib) who is a general oncologist in St. Catharines, and the other, (Dr. Tom Kouroukis), who is a blood cancer specialist at Juravinski Cancer Centre in Hamilton. I usually see Dr. Salib every 3 months and then Dr. Kouroukis 2 or 3 weeks later.

When I saw Dr. Salib on January 22nd, I was at my wits end. I had been experiencing so much discomfort with my feet. The arthritis had kicked up since the weather turned cold and the peripheral neuropathy was causing numbness to the point that I was stumbling and falling more often. I had a couple significant falls that I was lucky to have walked away from with bruises and abrasions. I had a number of other insignificant stumbles that could have been worse. Dr. Salib was quite concerned and decided to take me off of my maintenance chemotherapy temporarily, to see if it would help.

At first I was happy about this decision as I desperately want to be mobile again. For the better part of 3 years now, I have been unable to exercise or walk any distance due to the numbness and pain in my feet and the fatigue I experience. A break from the Revlimid would maybe give me that aspect of my life back.

Once the reality set in of what I might actually be doing...i.e. removing the medication that was keeping me in remission... I started to feel anxious. When I met with Dr. Kouroukis a few weeks later, we talked about it and he made me realize that coming off of Revlimid would likely not make a difference. Most of the nerve damage was done when I was on Velcade leading up to my stem cell transplant. The SCT procedure likely exacerbated the nerve damage. Revlimid does not usually result in severe neuropathy...so it is likely that the damage is already done and with the arthritis, I am just feeling it all more.

He suggested I remain off the Rev for a full month and then go back on every other day for a month. If I do notice a difference, I could either come off it completely or stay on 1/2 strength.

He was right. Coming off of the Rev made no difference in my feet. I am now back on full strength Rev again. My anxiety has abated and I feel good about what transpired.

It is scary to think about relapse. I know that it is going to happen, and I hope it will be far in the future, but the doctors believe I will likely get about 5 years of remission before I have to start a full treatment protocol again. I am almost 4 years post SCT, but 3.5 years out from the start of the Rev maintenance chemo and official "remission"...so I don't anticipate a change for some time yet.

When I started this journey there were very limited options for relapsed Myeloma. Thankfully, research has been very successful for MM and there are 4 new drugs available for me to work with when I need them. :)

Dr. Salib also had x-rays taken of my feet and referred me to an orthopaedic surgeon so that we can see if anything can be done with respect to the arthritis. :) My appointment is at the end of May. I am very excited to see if there is a solution for me.

For now, I will stumble along and make the best of this situation. It certainly did not stop me from enjoying my fantastic trip to Hawaii!!! <big grin>

Ruby Slippers

I edited this post and it changed the date that it was posted. It is from November 2013.


There's no place like home!

When I was out Christmas shopping in November I came across the most adorable slippers. They are snoozies brand and are the most comfortable soft slippers EVER. They have the non-skid bottoms so that even klutzes like me don't fall down on tile floors.

These were red sequined with bows. OMG! I had to have them. I thought they would be so cool to wear while in the hospital. Who could look at ruby slippers and not smile?

They remind me of how much I enjoy being at home. I am a very social person. People who know me will probably say that I am usually upbeat, funny, loud, talkative, etc.   I am.   But I also love to be by myself and just be quiet and introspective. I love a good book or a good movie. In my drug-induced stupors of late, I can sit or lie down and do and think about nothing for hours at a time. It doesn't bother me. I love feeling peaceful. :)

Before I had my tennis elbow surgeries last year I practiced visualisation to get me through it. (I had to have both surgeries with local anaesthetic only). I would visualise myself lying on a sandy beach...warm sun beating down, water coming in with each wave - washing cooling water over me - as I breathed in and out. It worked very well.

While we were in the Mediterranean I searched for the very spot on the beach where I could create this in reality. Unfortunately I didn't find it...there were too many distractions on the beaches....but I discovered something else. I didn't need the beach.

When I had my first reiki treatment, I was asked to visualise something happy and calm and relaxing. I went to the beach. It didn't work. It was too difficult to try to stay in that moment. I thought about when I felt the most at peace and content and happy. Then it hit me. It was home.

More specifically it was at home, just before Al and I go to sleep. Every night, Al and I cuddle with him spooning me and wrapping his arms around me. We usually only stay like that for about 2 minutes before I get too hot, (peri-menopause!!) but it calms and soothes and relaxes us. This is my happy place. It is my new "go-to" happy place.

So my ruby slippers not only evoke that feeling of being home and quiet and cocooned, but of being wrapped in love. (Al is puking into his mouth right now...sorry - that kind of ruined the moment.)

I think everyone should have an anchor that brings them to a warm peaceful place like mine. If you don't, it's worth the journey to seek it out. The rewards are priceless. Just like ruby slippers.

There's no place like home. :)

Altered States

I edited this posting and it changed the date of the post. It was originally posted in December 2013.

LOL...that is how I view my life right now.

What a wild ride this last week has been.

Day 1 – Normal. A little uptight about getting started but all in all I felt pretty normal.

Day 2, 3, 4 – Psycho. Hyper active, buzzing with energy but so tired at the same time. Hungry to eat anything I could get my greedy little hands on. No sleep...hours of lying awake trying to will myself to sleep.  Taking Ativan to nap, and seriously considering a request for medical marijuana to calm me down.

Day 5 – Stunned. Getting dressed and putting on makeup was an out-of-body experience. Drove to the hospital to get my disability papers and should not have done that. Had a weird conversation in the cafeteria with my husband’s cardiologist where I tell him I am in a Chemo Fog and somewhat incoherent. I think he thinks I am nuts.

Day 6, 7 – Blob. Feeling faint and lethargic. Spent the day in bed or on the couch. Fell going up the stairs because I was moving “too fast” at a slower pace than a snail. LOL.

Day 8 – Yeehaw!! Crazy energetic and ravenous. I actually gained 7 pounds today. LMAO! God, I hope it is water weight!! LOL!!

Who knows what tomorrow will bring. Poor Al. I hope he doesn’t lose his sense of humour.

Goodnight folks...<Big crazy beaming grin>

The journey officially begins

This post is out of order due to an edit I made. Sorry for the confusion. It is from October 2013.


Yesterday, Oct 28, 2013, my journey officially began. I met my new oncologist, Dr. H and his nurse Barb. I was pleasantly surprised by how nice everyone was...from reception to pharmacist, to lab techs. Everyone was genuinely caring and attentive.

Dr. H says he is not 100% convinced it is time to start treatment yet. Although I have lytic lesions in my skull, they are very small. I am not anemic (as of blood work taken 3 months ago), and my kidney function is normal. The bone marrow biopsy will tell the tale. I also had blood taken and am scheduled for an MRI. Currently doing the 24 hour urine collection. The results of all these tests will ultimately tell the tale. It is amazing what they can do with this info. Based on chromosomal analysis they can predict the reaction that the cancer will have to the chemo drugs. They will then decide how and when treatment will take place.

The biopsy itself was disturbing. My hubby doesn't really get what I mean by that. I internalize pain and negative emotions...so I sometimes feel shell-shocked after a painful event...both physical and mental. When I had my tennis elbow surgeries earlier this year it was much the same...the pain was tolerable - it was only the freezing and the staples into unfrozen parts that hurt...but the sounds, sensations and visualization of the process were disturbing to me. I have a vivid imagination, so the hammer and chisel pounding on my elbow made me emotionally sick. You know how you turn away in a gory movie? Like that only it is in your mind and you can't turn away. My bone marrow biopsy was like that.

The freezing hurt like a bitch (some people tolerate the alkalinity better than others) but it was the sensation of the needle pushing and boring into your bone that gets to you. The first one - the aspiration needle is smaller and did not hurt so much going in. The syringe that sucks out the marrow sample is a strange sensation. You feel the sucking sensation throughout your pelvis. It didn't hurt so much as freak me out. It hurt a little, and you get electrical shock type feelings down your leg...but the sucking...OMG! He decided to take three samples...but it did not get better or easier each time.  Then they take a bone sample. This is a bigger needle and the doctor is literally heaving on it as he turns it this way and that to get it into your bone. It hurts but it is the sensation and thought of what it is doing that disturbs me. And then it haunts me for hours after...leaving me quiet, sullen and in a shell-shocked state. Poor hubby didn't know what to do!

Today, I am doing well. Tender, but resolved the imagery of the procedure.

You are Enough!!

I recently made a comment on my cousin's FB post. He was in a funk of late, as many of us can relate. I made a comment and then stopped to appreciate the words I had written. I needed to hear them too. I think many of us need to hear these words...

You are ENOUGH. Always and forever. Never doubt yourself. If you are not enough for someone else, they do not see your bright light. They need to take off their glasses; you do not need to shine brighter. If you try to shine too brightly you will burn out. You are perfect as you are. You are ENOUGH!! 

Too often we are quick to tell others that they are wonderful...but do we tell ourselves? Probably not. I think we need to do it more often than we do. Take a moment and read this to yourself. Think about it. Believe it. It is your truth. Love yourself and happiness will follow. 

Another lesson re-learned...

Cancer gave me the gift of appreciating what is in my life, but it also gave me some unwanted gifts. I worry more about the people around me. I don't want to be a burden - physically or emotionally. I have become more empathetic to other peoples' pain and heartache. I feel more deeply. I try too hard to be everything to everyone. Wife, mother, daughter, sister, friend. I forget to put myself first sometimes...and I try to do it all. I am doing too much.

I have been struggling. The black dog of depression has returned to the periphery. He sits and waits for me to fall. I thought I could battle him alone. At first, I did not really understand why he was back. I thought I was just tired. I thought that ignoring him through rest and sleep would make him bored so he would give up and leave.

Sometimes I think I can do this alone. I think I am strong and invincible. I think that I don't need support. I can be stubborn and proud. I desperately want to assert my control over this demon that haunts me. Most days I can. But sometimes I need to ask for help.

Yesterday I was overwhelmed.

I had a Reiki appointment at 1:00 so I went into Wellspring early to talk to a peer support volunteer. I used to talk to Pat. At least once every 1-2 weeks I would go in and have a coffee and talk about the craziness bouncing around in my head. We did not talk just about cancer and its effects. We talked about the future, the past, the present. We talked about joy, depression, worry, loved ones, people who wronged us, people who propelled us. He always had a story to bring things back into focus. He challenged me to think about what was really important and get me back on track. Over the past 6 months he got sick and died. I knew that I missed him terribly, but I did not realize how lost I had become.

Since he left Wellspring, I did not go back for peer support.  There are many, many wonderful support workers there, and I knew that Pat, himself, had recommended one in particular for me. I just couldn't do it. I thought that I could not start another relationship like that yet. But yesterday, I did.

I did not know where to begin. I told Gena that I was overwhelmed. I had so many thoughts and worries bubbling around in my head. I started to cry. I do not cry anymore. I watch sad or touching movies and I do not cry. I have lost 3 friends this year and did not cry. I cried a few tears after Pat's Celebration of Life, but I know there was so much more inside that would not come out. I realized in that moment how much I missed Pat. I also realized how much I missed talking about my issues to someone not emotionally connected to my family and personal situation. I need that outlet. I need someone to help me see clearly what is important.

Gena helped me to determine that although I am involved in so many issues in my life...I do not have to worry about them all every day. If I cannot DO anything to remedy the situation in that moment...then I should not let it consume my thoughts. We talked about a few of the more serious issues I was dealing with and she helped me to see that I could not do anything about them. It was up to other people to action them. I could provide my support and love to those people involved, but I could not DO anything. So why let it worry me and steal my joy from today, or from this moment? It was a powerful lesson. One I have heard before, but I seem to need to remedial work on this one. :)

My message to you, my readers, is do the same. Take stock of all that swirls around in your head each day, causing you to worry or feel sad, and think about what you can DO about it. If the answer is nothing...then let it go. For now. That does not mean you will not rally when the time comes that you can do something...but don't let it steal your joy.

Our time is limited and is precious. Appreciate today for what it is. Live fully in the NOW. Know that I love you all, and will always be there for you when you need me. I just won't carry your pain around with me anymore.

New Doctor!! :)

I had a check up this past week. All is good!! The best news of all is that I have a new oncologist!!

In my last blog post I mentioned my displeasure with Dr. H. I went to this appointment prepared to give him a piece of my mind...but I was greeted with a letter stating that Dr. H is idling into retirement and job sharing with another oncologist until that time. His patients were split between two oncologists and I would now be seeing Dr. Salib. YeeHaw!!! Even before I met my new oncologist I was giddy with happiness!!

Dr. Salib is a new addition to Niagara Health Services. She just finished her internship in Toronto with experience in haematology at Sunnybrook and Princess Margaret. She is young and full of vim and vigour! She took the time to ask me questions about my history - even though she had read it in the medical file.

When she learned that I was getting over another chest cold, she checked out my lungs to make sure there was no residual congestion. Wow...Dr. H told me "That is not my job. That is your GP's job" when I asked him to check me out when I had pneumonia at my last visit to him. What a difference. She was also quite supportive of my decision to maintain Dr. Kouroukis at Juravinski a co-manager of my file. Wow!!! I lucked out!

I have a few tests to complete before my next appointment to ensure that I have no issues with my liver. I had mentioned to Dr. H, as did another oncologist filling in for him once at least a year ago, that my liver tests consistently come back as abnormal. Dr. H scoffed at his colleagues concerns and said that it was normal for someone on chemo to have abnormal liver results. Dr. S noticed that they were continuing to rise and suggested that we should check into it just to rule out any issues. I wholeheartedly agreed. Peace of mind is gold when there is so much else going on!!

So...no need to worry. I will have an ultrasound and then I don't go back until my next regularly scheduled 3 month appointment. :)

What a difference a doctor can make!! What a relief!

Not all doctors are great!

Over the years, I have seen many doctors. Some were fabulous but not all. I cannot stress enough, the importance of checking the info your doctor provides to you and getting a second opinion for the major stuff.

When I was diagnosed with MGUS (Monoclonal Gammopathy of Undetermined Significance) I was referred to a hematologist/oncologist in Etobicoke. (Because my GP is in the GTA.) When Dr. C determined that I had progressed from MGUS to Myeloma and needed to begin treatment, we decided that I needed to be referred to an oncologist in the Niagara area. It would be unrealistic to have to travel weekly to the Brampton hospital campus for chemo and then it was not certain that Princess Margaret would accept me as a patient for the stem cell transplant (SCT) since I lived outside of their area.

As such, Dr. C told me to take a trip (we did...the Mediterranean) and when I returned 3 weeks later he had obtained 2 other medical opinions for me. One from a radiologist and another from an oncologist. He has also referred my info to Juravinski Cancer Centre in Hamilton. (I did not want to be referred to St. Catharines as I had a low level of confidence in the Niagara health system. :( That is another story...) Not only did he take the stress off of me by doing this for me, he took it upon himself to get second and third opinions for me. He told me if I ever had questions, I could call him, I did not see Dr. C again, however 8 months later, when I was going in for my SCT I had a voice message left on my phone from Dr. C stating that he heard I was going to have my SCT soon and that he wished me well.

Juravinski accepted me as a patient but I had to be referred to St. Catharines for my pre-transplant treatment. Dr. H was the oncologist I was referred to. I found that he did not have a great bed-side manner, but with specialists, this is often the case. He was sometimes cold and abrupt. He was, however, very factual and I did appreciate that approach. As I had done a significant amount of research into my illness, I found that it did not really matter that he would discuss my illness and treatment with me at a higher level. I have continued to see him every 3 months since that first meeting in October 2013.

Once I started to prepare for my SCT I was referred to Dr. K at Juravinski Cancer Centre. He was fantastic. Very patient, knowledgeable and friendly. He was also the head of malignant hematological cancers. I was very pleased with this doctor!! I saw him a few times prior to the SCT and then afterwards. After a year he told me that he no longer needed to see me and that he should be sending my file back to the general oncologist, (Dr. H). I pleaded with him to allow me to continue to see him since I liked having an MM specialist in my corner and that I did not have confidence in my general oncologist. He agreed and I have been seeing him every 3-4 months since.

After my SCT, I found that Dr. H did not always know the answers to my questions about new treatments or about the side-effects I was experiencing. In some cases he made me feel stupid for asking or like a whiner. As an example, when I asked what I could do about the daily, painful diarrhea I was experiencing, he told me that I was obviously not malnourished and that he had patients who were skin and bone that he was trying to help! I was not impressed. When I discovered a medication that could help, and shared the info with him, he poo-pooed it (LOL), and reluctantly gave me a prescription.  In contrast, when I told Dr. K about the drug he took the info and said it was similar to a powder he prescribes but a pill form would be so much easier for patients to take.

Dr. H admitted that he was unaware of many of the details about my type of cancer as he had few patients with MM and he had to know a lot about a lot of different cancers. I get it. At least he was honest about it. If I had a question he could not answer, he would check with Juravinski and let me know. Eventually, when I saw Dr. K on a regular basis, I would tell Dr. H that I would get the info myself from Dr. K and then let him know the answer. Not ideal, but it worked.

Sometimes, my visits with Dr. H went very well. He could be very caring and full of new information gleaned from a recent meeting or information session. Most times, however, I felt that he was just putting in the time with me. I also felt he was resentful of my continued relationship with Dr. K. He often says "I don't know why you are still seeing Dr. K", as he is walking out the door. I don't respond.

I have heard negative comments about Dr. H from many people. Other patients and care-givers, nurses, and home-care workers. I was willing to stick it out because I have another opinion to check with. There are two incidents though, that have given me pause and have compelled me to write about it here.

The first was late last year. I was becoming depressed about the quality of my life. I could no longer go for walks, or ride my bike as I never knew when the fatigue switch would flip and I would be unable to continue. I don't mean that I get tired and feel like I want to return home. I mean that I can NOT continue. Sometimes I have to sit down and rest and others I need to lie down and sleep for several hours. If I continue, I stagger like I am drunk and my thinking processes can become impaired. I do not drive if I am that fatigued!! I always make sure that outings I take on my own take place after at least a day of rest, and I have a Plan B in case I can't get home.

Dr. H suggested that I take a medication vacation. He told me to go off the Revlimid for a few months and see how I felt, then we could reintroduce it at a lower dose if I decided to do so. I did not like this idea, as the Rev was keeping me in remission. He advised me that there were new drugs that were approved that I could take if I relapsed right away. I told him I wanted to discuss it with Dr. K first. Thankfully I did.

The Rev costs me $11,000 a month. (I take it every day, no breaks.) When I began my protocol, I had to be approved for the use since it was for maintenance...and not for treatment. The drug company did approve me and the insurance plan agreed to cover the 80% and the drug company picked up the other 20%. Dr. K told me that sometimes when a patient goes off the drug and says that they are not tolerating it well, the drug company may decide not to continue to provide it to that patient. In addition, my insurance company may decide to drop my coverage if they feel it is not being tolerated and may cause other issues. The last concern was that since I had been taking it for 2 years at that point, if I came off of it, it may not work for me when I went back on.

So...if I had not kept my Dr. K as a second opinion, and I had gone on Dr. H's advice only, I could have been royally screwed. Yes, there were other options on the back burner, but I have no idea if they will work for me.

The second event happened recently. I had pneumonia and Al had to work in Ottawa so my parents came down to baby-sit me. :)  I had an appointment with Dr. H and I decided to keep it as I was on the mend anyway. Dr. H refused to listen to my chest to see how I was doing with the pneumonia. He told me that it was my GP's job to check on me. He also told me that my pneumonia must not have been very bad if they needed to find it through an MRI and not on an x-ray. When I told him I was also seeing a cardiologist because of an arrhythmia was found when I was in the ER, he told me that it was of no interest to him since it was not related to my MM. Wow! The icing on the cake was when he proceeded to tell my parents that I was technically no longer in remission, but my disease was not progressing. I was livid. First, he had not told ME that I was not in remission, and how dare he tell my parents!! Thankfully they are hard of hearing and did not really understand what he was saying, so I let it go and will address it with him next visit.

When I saw Dr. K this past week, I asked him if I was still in remission. I related the conversation with Dr. H. He looked surprised and quoted my numbers and said that I was definitely still in remission and he could not understand why Dr. H would say that. He wondered if he had looked at old numbers perhaps.

I think Dr. H just did not think before he spoke. I think he is angry that I am seeing Dr. K. I think that he was in a pissy mood and took it out on me and my parents. This is the Dr. H that is the legendary asshole I have been hearing about. I will let him know how I feel next time I see him. Depending on how that goes, I may have to change oncologists. His arrogance caused me almost 2 months of anxiety and could have caused my parents much angst as well.

This long diatribe is meant to highlight the importance of getting second opinions; of doing your homework; of not blindly following your doctor's orders; and understanding that not all doctors are alike. Some are assholes and some are simply fabulous!! You need to find someone you trust and that you connect with and then hold on to them!!

Namaste!

I am happy to report that I have had another great check-up!!

The cancer is almost non-existent as my M-spike is still within/below normal range.  :)  My Kappa/Lambda free light chain ratio remains around 2:1. It should be at 1:1, but it is only slightly above the norm. If these numbers confuse you, then don't worry about it. Only other MM warriors will be able to relate. :)

The bottom line is that I remain in remission. I credit the maintenance chemotherapy that I take every day for that success. :) As you know, from previous posts, the Revlimid is also the cause of my side effects of extreme fatigue, digestive issues, muscle spasms, peripheral neuropathy (nerve damage) in my feet, and chemo brain (duh!!). It does get me down sometimes, but at the end of the day, it is saving my life. The longer I can remain in remission, the closer we will be to a cure when I relapse. :)

I have embarked on a few different approaches to address those side-effects. I have begun a yoga class on Sunday mornings. It leaves me feeling strong, spent, and in control. although I cannot embark on a full scale exercise program, the yoga helps to keep my muscles moving, blood flowing to all tissues, and strengthening my core for balance and spinal alignment.

Yoga also provides an outlet for me to interact with other women in a safe and non-judgmental environment. It does not matter that I am 80 pounds overweight, or that I cannot feel my feet and topple over during tree pose. It does not matter that I have to rest mid-way through the hour. It does not matter that I eat meat and sugar and gluten. It does not matter that sometimes I have a glass of wine after yoga (we meet at a winery). It does matter, though, that I am accepted and supported.

My yoga teacher, Rachael, also provides advice and guidance on alternative, natural therapies. We met last week and she has provided a number of suggestions for me with regard to using essential oils. Although I hold a membership in DoTerra and have amassed a plethora of essential oils, I have used them primarily for diffusion. She has provided suggestions to assist in a number of areas that I have concerns. The good news it that I already have most of those oils already!! Now I can put them to better use.

Of course I had to check with my oncologist about ingesting certain oils as anything that could "boost" my immune system could also kick-start my cancer. Blood cancers, especially multiple myeloma, is a cancer of the bone marrow and the blood cells produced there. MM produces rogue or mutated anti-bodies and boosting production of anti-bodies will boost the production of the good and the bad. Lucky for me, many of the proposed strategies are either topical or diffused so there are no issues to worry about.

I will keep you posted on what I find is working for me.

Until then, Namaste!

Grounded

I had a bout of pneumonia.

It was quite scary actually. Biaxin, which is the usual choice of antibiotic for sinusitis, or bronchitis, always works for me. I see the effects almost right away. Not this time. I kept getting worse and worse over the 2 days after starting it. I went to the emergency room on day 3.  The doctor on call was phenomenal! She went above and beyond for me. When the x-ray did not show pneumonia, but I was obviously having some respiratory issues (like passing out)...she ordered a CT Scan which revealed the culprit. The new antibiotics would take up to 48 hours to show an improvement, so I went home very worried.

You see, I have done my research on Multiple Myeloma...and I know that most people with this cancer die of complications from pneumonia. It was the first time that I was thinking about dying in a serious way.

It seems overly dramatic in retrospect, but at the time, when every cell of my body ached, my lungs were on fire, and the chills and sweats of a fever were overwhelming my senses, I really thought that I could get so sick that I could die.

I thought about the things I had not yet done that I wanted to do. I realized that as much as I thought I was ready to accept whatever was coming my way, I really wasn't. I have lots of living to do yet! I have people to see, places to go, memories to make.

I also realized that I am still trying to do too much. Sigh. Type A personality traits do not easily lend themselves to slowing down to a crawl. But I have to. I have to slow down. Stop trying to do too many things on my good days. Just chill. It is a hard pill to swallow.

So, I will go back to ensuring I have days of rest between my "activity" days. I will stop saying "yes" to every invitation that comes my way. I will plan my weeks more carefully to ensure I don't get over-tired. And I will go back to having my afternoon nap-time, whether I really feel like having it or not.

I am grounding myself. Grounding in the teenager-in-trouble sort of way...LOL!!...but also in the spiritual sense. Finding my centre. Focusing on self. Paying attention to my body. Nurturing self FIRST above all else.

ground·ed

ˈɡroundid/

adjective

1. 1. 

   well balanced and sensible.

   "the kids have money and a rock-star dad, but they seem grounded"
2. 2. 

   (of a pilot or an aircraft) prohibited or prevented from flying.

   "you don't taunt a grounded flier, especially after he's had a few beers"

I invite all of you to do the same for yourselves, whether you have a critical illness or not. Make yourself a priority. Slow down your life. Savour the moments and the people in you life. It all comes to an end much too quickly. Don't watch the concert through your view-finder...take it in with all of your senses!!