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