December 2014

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

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

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

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

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

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

I have realized so many things over this past year: 

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

Thank you for being there for me. :)

St. Thomas, USVI

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

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

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

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

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

Popeye the Sailor Man...TootToot!

As you may remember, I have to go to the hospital once a month for an IV. It is Pamidronate...or Aredia...and it tells my bones to hold onto their calcium. This is very important for someone with Multiple Myeloma because the cancer eats holes in your bones. Seriously...round punched out holes called osteolytic lesions or "lytic lesions" for short.

I have a few in my skull and several throughout my spine. I have to be careful in this weather that I do not fall or get into a car accident because I could literally break my back! I am also not supposed to start power lifting at the gym...so I am being extra careful and trying to refrain from any exercise whatsoever...LOL...just kidding!

Anyway, many women have to have this Aredia for osteoporosis and most get an injection once or twice a year. I get a three hour IV drip once a month. The good part is that I can go to the hospital and they put in the IV and the Pamidronate is in a vacuum bottle (looks like a baby bottle) and I can go home. After 3 hours, I take out the IV and I am done. For a year it has been going very well and I have not had an issue...until last month.

The Chemo rooms were all full and the nurses were very busy. I was happy to get the nurse I did, because she is gentle and very nice. She joked around with Mark and I and she inserted my IV. We left to go to lunch and run some errands. Shortly after leaving the Chemo area, I felt the IV pinching me. Sometimes it does...and I am not a baby so I sucked it up and proceeded on my way.

Mark and I went for lunch and a little shopping and I continuously tried to change the position of my arm to alleviate the pinching sensation. Mark called me a bad name -- referring to my "whining" about it -- and so I shut up. When I got home I removed my jacket and looked at my arm. The IV was inserted in the middle of my forearm and from there up to my elbow I was very swollen and hard as a rock. Hence the title of this post...


I pulled out the IV  and only clear liquid came back out of my arm...crap!! The pinching I was feeling was the Pamidronate pumping into my arm, and not my vein!!!! I called the hospital and they had me return. The nurse was very apologetic and reinserted a new IV into my other hand. We waited to be sure it was not interstitial (big medical word...LOL) and she said my other arm was fine. Not to worry.

I went home and googled it and found that sometimes there is significant damage to the tissue and necrosis (tissue death) could occur. FML! I kept it elevated and iced it. It kept getting worse. By Sunday I could not even touch my arm, it was so sore. I went to the ER to have it checked. The chemo that I am am on increases my chances of developing blood clots so I needed to have it checked.

The ER doctor confirmed that there was no abscess and no blood clot, but he diagnosed it as Cellulitis. This is an infection of the deeper skin tissues. It can become very serious and is closely related to Necrotising Fasciitis or Flesh Eating Disease!!! My mom had cellulitis and was laid up with IV antibiotics for 10 days. I was travelling out of the country (I'll talk about that in another post) on the following Saturday so this was not good. I had an IV antibiotic that day, filled a prescription for oral antibiotics and had to return the next day for another IV.

The next day I went back for the IV and after waiting 3 hours to see the doctor in ER, (not the same one as the day before), he determined that it was not Cellulitis but simply a reaction to the chemicals in the Pamidronate. For good measure we ran the IV and I continued to take the oral antibiotics, but it would just take time for it to settle down.

Today it is 4 weeks from that incident. My arm is much, much better, but still sore to the touch at the IV insertion site and on the upper forearm. I am going today for the Pamidronate again and will have them put it into my hand where it will be immediately obvious if it is interstitial and I will wait 5 minutes before leaving.

Sigh...nothing I do is ever easy!!

Hello!!

Sorry it has been so long since my last post. I have been very busy! The short story is that I am doing well.

Still in full remission and taking a low dose chemotherapy drug to prolong the remission period.

I have so much to tell you, but not in one long post. I will compose a few shorter "stories" to recount the past month.

Thanks for being patient!

You make a difference

I am truly blessed. I have so many wonderful people in my life. So much positivity and love. It gives me strength and stamina. I could not have made this journey so far without all of you. Yes, even YOU have made a difference.

I look at the stats of my blog now and then. I have had over 6000 views. Wow! That is amazing to me. I feel like that is the equivalent to 6000 "I love you!"s or 6000 "I am here for you!"s. It brightens my day and I feel the positive energy it conveys.

Thank you for taking the time to read my posts. It means more to me than you know.

Back to Normal

I recently had my nails done. I have been sporting bio-gel nails and their predecessors- fibreglass and acrylic- for over 15 years. My own nails are very soft and they tear easily. Because of my cancer treatment and the need for me to have the oxygen monitor on my finger tip when I visited the hospital, I could not have bio-gel nails for over almost a year.

After my stem cell transplant, my own nails were very healthy and grew very fast. They looked fantastic. Of course that didn't last. They started to tear across the top again and I ended up with very sore finger tips! :( So...I went to the nail salon and had them enhanced. :)

When they were done, I felt misty-eyed and a little overwhelmed with emotion. It was not having nice nails that did it...I am not that shallow...it was that I was getting back to the "old me".  My body is still holding onto the extra weight I put on during my induction chemo phase, and my hair is entirely different with this short, curly, dark "do". My nails were an indication that I was getting back to "normal".

I did not realize how much it bothered me that I was different until I started to get back to normal. I look back at pictures of my round steroid-bloated face and am so relieved now that it is back to normal. I see pictures of my bald head, and at the time I loved it and I still miss the ease of up-keep, but I see myself differently now. I can't wait for this curly mop to grow out so that I can style it.

I want to look in the mirror and see ME. It has been a long time since I have. Cancer takes so much of us...and so much more than we expect.

Maintenance Therapy

As I mentioned in a previous posting, I will be starting maintenance chemotherapy soon. This drug - Revlimid - will help me to remain in remission longer. I have not started yet as the approval process is just commencing.

Approval process?? What is that? Are we, as Canadians, not entitled to medications and medical protocols that will help us when we are ill?

It may surprise you that cancer medication is no different than obtaining antibiotics when you have pneumonia. If you went to your doctor and were diagnosed with pneumonia, you would be given a prescription for antibiotics and you would head over to the pharmacy to fill it. If you were self-employed and had no medical plan, you would be expected to pay out-of-pocket for that medication. If you have a medical plan, you would pay 20% or a similar amount and your insurance company would cover the rest. The exception is for intervenous drugs that are administered in the hospital or by a health care professional in a home care environment. Many chemo drugs are now administered in pill form, and they have to be picked up by the patient at the pharmacy.

Revlimid for chemo maintenance therapy costs $8000.00 per month. The drug company has a compassionate program whereby they will fund some or all of the cost depending on your circumstances. They also screen to ensure you are a good candidate for their drug. They will conduct a telephone interview with me this week to determine if I am a suitable candidate. I am not sure what they will ask, but assume it will be related to my age, overall medical condition, whether I am of child-bearing age and considering having children, etc. I expect to have no difficulty in obtaining approval.

Once I have approval for the drug, the manufacturer will negotiate with my medical plan provider to determine if they will cover the drug, and at what percentage. Since maintenance chemo is not required for my treatment, but is an accepted protocol to extend remission, they may have an out. We expect them to cover it at 80%. We are also hopeful that the drug manufacturer will pick up the tab on the other 20%. If they do not, my medical plan has a catastrophic clause that I will only be out of pocket $3000 per year and 100% of the remainder will be covered. Phew! Fingers crossed!

Once I get approval, and start taking it, I will likely feel fatigued again and may become neutropenic. This means that my antibodies could become low and I will be unable to fight infection effectively. If this happens, I will have to be careful of public interactions again. :(

As I learn more, I will update my blog.

Delayed Reaction

My last post was September 10th and it was a quick, impersonal update on my medical status. Maybe you were wondering why I did not write something sooner. Well, it was because the news had an unexpected impact on me. I should have been elated at a status of full remission...and I was...for a brief period. I, shortly thereafter, found myself to be sad, down, and not really sure why.

I have thought a lot about it and think I have figured out what happened. I struggled to find a metaphor to use to explain it, and I think this one is close, although I dare say that unless you have walked in my shoes, you would not completely understand any of what I am going through.

Imagine that you are ready for the prom, or a special date...your hair is done, your dress is beautiful, your makeup perfect. You feel like a million bucks. Then you look outside and see the torrential rainstorm...and you know that by the time you get to the party, you will look a wreck...your hair will be flat, your mascara running and your silk dress covered in water spots. How depressing!

My situation is similar. A full remission is fantastic. The best possible outcome after the stem cell transplant. But the rainstorm -- the relapse -- is still looming. Not only that, but the proverbial clock is now ticking. Multiple myeloma is not curable. This is the beginning of a cycle of remission, relapse, remission, relapse for me. The length of my first remission will set the tone for the others that will follow.

Of course I hope for, and anticipate, a long remission, but the reality is that the average is just a few years. I felt happy that I had such a fantastic response, but felt sad that the reality of my situation was hitting me full force for the first time. Tick tock. Son of a bitch...it just isn't fair!

So I was feeling sorry for myself for a few weeks. I am entitled. It has been a year since my diagnosis and it just overwhelmed me. I am also over it now. I am feeling positive and energized again. :)

My situation has not changed, but my outlook on it has. I am ready to enjoy the remission period to its fullest extent, and will be ready for the next battle whenever it is time.

Full Remission!!!

I saw my oncologist on Monday and he provided me with fantastic news...my myeloma is in full remission. Yay!!

I am expecting that it will be a long remission. :)  To bolster my chances, I have elected to take maintenance chemotherapy. This will be a low-dose chemo that I will take for the duration of my remission.

I will be starting this therapy once I am approved for the compassionate program the drug manufacturer provides. Apparently the drug company will negotiate with my health insurance company and I am hopeful that insurance will cover 80%  and the drug company will waive the 20%. Since the drugs cost $8000/month, it is kind of important to have it covered. :)

 I am still battling side effects from my previous chemo treatments and hope that I can resolve all of them soon. I will be starting physio-therapy, acupuncture and massage therapy, and I have some good pain-killers to use in the meantime. :)

I feel good otherwise. Strong and healthy overall.

Sorry this post may come off a little "matter of fact", but I am over-tired today. I will write again when I am more chipper!:)

Awake!

My fatigue has passed. I no longer need to take a 3 or 4 hour nap each day! It was a sudden change and a welcome one! If my feet and joints and muscles did not hurt so much, I could get so much accomplished each day!

I have appointments with both of my oncologists in the next 2 weeks. We will see what they say about the pain, and if I can get some relief. I just read a blog post from a fellow MM warrior and he swears by Oxycodone and marijuana. Hmmmm...seems a little extreme, but then again being in constant pain really gets to you after a while. I am going to have to discuss it with the docs and see what they recommend.

I expect to start maintenance chemo this fall and there is a strong likelihood of it causing me fatigue and muscle and joint pain. ARGHHH! It is so frustrating that I have to laugh at it. I am also enjoying the lack of fatigue as much as I can for these next few weeks just in case it sets in again. :)

Peripheral neuropathy is a real bitch. It is caused by many cancer drugs and mine is predominantly from Velcade which is the main cancer fighter used in MM treatment, I haven't taken it since April, but the PN seems to be getting worse rather than better. It is burning and tingling in feet and sometimes the hands. My feet feel like they are just waking up from being asleep. Later in the day, or anytime that I am on my feet for an hour or so, I get the sharp shooting pains that PN provides. They are like electric shocks, or hot needles. The Lyrica I take helps somewhat, but not enough on most days. I often have to take a painkiller and a sleeping pill at night. :(

All in all it is not so bad. I feel great otherwise, and I can putter around the house every day doing something that makes me feel useful. I can read and play on my I-Pad so that I am intellectually stimulated every day. I have wonderful interactions with my family and friends both in person and virtually. I focus on living each day and not on dying. My life really is pretty wonderful right now! :)

Update on my condition

Wondering what I have been up to? Not much! Still battling the fatigue, although it is a little better. Generally I sleep 8 or 9 hours at night then I am either up all morning, and nap all afternoon, or I go back to bed after Al goes to work and sleep all morning. It is an exciting life. LOL!

It really isn't all that bad. The weather has been rainy most days in the last few weeks so sleeping is easy to do. I also know that my body is healing while I am sleeping, so I don't mind doing it.

When I saw the doctor 2 weeks ago, he said that fatigue is normal 3-6 months post-transplant. I was at 2 months then. It can persist longer in some cases, but I find that I sometimes have a day that I don't need a nap at all, so I feel it is getting better already.

I was experiencing significant muscle and joint pain. I took myself off of the Lipitor (cholesterol medication) I was taking to see if it was the culprit. It is somewhat better now, after 2.5 weeks, but I still have very sore shoulders, neck, hips, hands and feet.

The feet are my biggest complaint. I have peripheral neuropathy that manifests itself as constant tingling (I describe it as buzzing) in my feet. My toes and heels have reduced sensation, but are not totally numb. At night (and sometimes during the day if I walk too much) I get shooting pains in my feet and calves. The Lyrica is helping reduce the pain - I don't need to take pain-killers to sleep any more - but it is still somewhat debilitating. In addition to that, my plantar fasciitis has flared up (from walking around bare-foot) and I find that between the 2 conditions, I am quite limited in my mobility. :(

The doctor did not have my blood protein level tests back when I saw him last so we have not categorized my remission level yet. Regardless of the level of remission, I will likely be starting maintenance chemotherapy in the fall. This is a low dose oral chemo (Revlimid) that I will take indefinitely to prolong the remission period.

What this means is that although the stem cell transplant re-booted my bone marrow, it may still be producing some myeloma cells (Partial Response or Partial Remission). Or, if it shows that there are no myeloma cells being produced (Complete Response), the myeloma will become active at some point - in months or years. Once the myeloma levels reach a certain threshold, I need to begin full treatment again, possibly including another stem cell transplant. The maintenance chemo will slow down the production of the myeloma cells and will extend the time that I will be in a state where I do not need the full chemo treatment.

Despite the fatigue, sore feet and muscles, and occasional nausea, I really do feel good. I wake up every day happy and ready for that day's adventure. One thing that really stands out for me is to be thankful for every day that we have. You don't know what the future holds or how long you have on this earth, so you might as well resolve your past issues and live in the present. :)

Sleeping Beauty

I am a modern age Sleeping Beauty. I sleep all night, then awaken for a few hours then nap all afternoon, awaken for a few hours and then sleep all night again. My darling handsome prince keeps an eye on me, but he hasn't tried the kiss to wake me up either...so I think he is liking this arrangement. LOL!

Seriously, I am so very tired all the time. I will discuss this with my oncologist next Monday, but I suspect it is simply post-SCT (stem cell transplant) fatigue. It is quite common and can last months or years.

I really hate having to nap in the afternoons when the weather is so nice, but I can't help myself! :(

My friend Barbara reminded me of the times when I was tired and could not sleep, so I should be thankful that I can sleep now.

Sometimes I think my body is using all its energy to generate hair...LOL...see previous post!

WTF...What the Fuzz?

I am growing hair! Lots of it! It started off as blonde (or white - as my husband likes to say) very super fine fuzz. Then some darker hairs started to poke through. I think I am looking a little like Gollum...but Al says that's ridiculous. LOL!

   

In any event the hair is coming in quickly and I am thrilled. my eyelashes and eyebrows are sporting wee tiny little hairs as well. :)

I can no longer go out just sporting the bald head, since its a little nasty looking now, so I will have to resort to hats, kerchiefs and maybe even a wig! :(  At least until the hair is filled in enough to look like hair.

A new perspective

So here I sit, in my backyard, my oasis. As I look around I am almost euphoric at the sights, sounds and smells. Beautiful flowers, clean sparkling pool, abundant green herbs, the sounds of water flowing in the fountain, birds chirping, wind chimes chiming, the smell of fresh cut grass, rosemary, basil, lavender....it is all so wonderful.

I appreciate my back yard more this year than any other. I am amazed at the growth of my cucumbers, cherry tomatoes and all my herbs. My hanging baskets bring me so much joy with their endless colourful blooms. The grass seems greener and thicker, the air clearer and cooler.

I am not sure if it because I know I am going to spend a lot of time here in the next several months, or if this disease has put a new perspective on things.

Let me go off an another tangent for a moment. I love dragonflies. I think I always marvelled at how beautiful they were. The other day I saw two huge dragonflies mating in my backyard. The next day I saw another dragonfly, a smaller one. I have lived here for 8 years and have never seen a dragonfly in my yard...and I see 3 in 2 days. I have to see of this is an omen or symbol of something. (Al makes a "you're crazy" signal at me.)

So this is what I found:

Maturity and a Depth of character

The dragonfly, in almost every part of the world symbolizes change and change in the perspective of self realization; and the kind of change that has its source in mental and emotional maturity and the understanding of the deeper meaning of life. 

The traditional association of Dragonflies with water also gives rise to this meaning to this amazing insect. The Dragonfly’s scurrying flight across water represents an act of going beyond what’s on the surface and looking into the deeper implications and aspects of life.

So...what does this mean? I think it is absolutely appropriate that the dragonflies came to me at this time. I have been through a monumental change with respect to emotional maturity. I have a deeper understanding and appreciation of the world around me. I am content with my life and find joy in the little things - like the sound of wind chimes or seeing a fat bumblebee buzzing around my flowers. 

Regardless of the significance, of any of the dragonflies, I am happy and content and at peace with my life. All is good in my world.

A heart-warming story

I came home from a doctors appointment one day a few months ago and checked the voice-mail. I had a message from Dr. Cuthbert.

Dr. C was the hematologist that I was referred to 2 years ago when it was first discovered that I had MGUS (monoclonal gammopathy of undetermined significance). He was located in Etobicoke (where my family physician is) and we decided to stick with him until the point that I needed treatment.

Dr. C is a lovely man. He is older...not sure how old...and he is from Antigua and is the consummate gentleman! So caring and compassionate, and smart. The absolute perfect doctor! During my MGUS, I had blood work drawn every 3 or 4 months. I would meet with Dr. C and he would go through the results and openly discuss what was probably happening in my body. When we got to the point, last May, where the diagnosis changed from MGUS to Smouldering Myeloma, (which means it is confirmed to be cancer, but is asymptomatic so no treatment is necessary yet), he was reluctant to do the bone marrow biopsy until he really needed to do it to save me from having to have this painful procedure more than once. That's the kind of sweet, kind man he is.

In August, when the x-rays indicated that there were bone lesions in my skull, we worked together to make some decisions regarding next steps. First, I needed to book my trip to Italy and Greece. :)

While I was away on my trip he was going to confer with some colleagues on my x-rays to ensure it was absolutely myeloma and at the point of needing treatment. Since Multiple Myeloma is not curable, and the treatment is very invasive and intense, it is best to do nothing as long as possible. There are 4 symptoms that they look for that indicate when treatment needs to begin. The acronym CRAB is used to describe them.

C is for calcium...sometimes calcium is leached out of the bones into the blood resulting in calcium rich blood or hypercalcemia. This makes the blood thick,and sluggish causing organ damage and poor circulation. I did not have this.:)

R is for renal failure. This is kidney damage. The cancerous IgG proteins and free-light chain proteins that my bone marrow was producing can cause significant damage to the kidneys, resulting in full kidney failure. I did not have any signs of kidney damage. :)

A is for anemia. I did not have any signs of this. :)

B is for bone damage or bone pain. Myeloma causes lytic lesions to form...these are small punched-out holes that form in the bones. I had evidence of several small lesions in my skull. (Yes, you can interject with myriad jokes about holes in my head.)

Because I had one of the four symptoms, it meant it was time for treatment. I was no longer smouldering...I had active multiple myeloma. :(

As I said, Dr. C was going to confer with colleagues to confirm the diagnosis and if it was active MM he would contact Juravinski to confirm that they could take me there. I did not want to lose Dr. C as my oncologist, but since he was connected with the Trillium group of hospitals, it would mean my 4 months of induction chemo would be in Brampton and the Stem Cell Transplant would be at Princess Margaret. It would be much closer for travel for me to transfer to an oncology team out of Hamilton or Niagara.

When I got back from my trip, he confirmed what we already suspected. I needed treatment, I was an excellent candidate for SCT (stem cell transplant), and Juravinski would definitely take me. I was going to miss Dr. C. He asked to be kept in the loop on my medical reports and such and told me that at any time if I was worried or concerned or had questions, he would be happy to help and was only a phone call away.

So....back to the top, and the voice mail message that he left me. He said he had been receiving reports on my progress and was aware that I was soon going to have my SCT. He said he was confident I would do well, he wished me good luck and reminded me that if I ever needed him, to just pick up the phone.

Can you imagine? This man is so busy already with his own patients, hadn't seen me in 7 or 8 months, and yet he took the time to call me just to wish me well. There are some wonderful people in this world!!!

:)

Removal of the Epheresis Catheter (Central Line)

Free at last...I am free at last! I no longer resemble the Borg with a dual port on my right shoulder. :).

This was to be a simple procedure. The radiology technician who prepped me told me that often they don't even need freezing, they simply snip the stitches and pull the line out. Yah, riiiiiiight! I already knew that my line was well established since a pull on the exposed end moved the skin up near my neck. But hey, what do I know...I'm no medical professional!

So Dr. Radiologist comes in and says, "yah, we need some freezing since you've had this for almost 2 months now." There is a Dacron cuff on the line a few inches back from the exit point and scar tissue forms at that place to help secure the line. He said he would freeze me, and would have to release some of the scar tissue from the cuff and then the line would just come right out. Okay...sounds simple enough. I had a funny feeling it wasn't going to be quite that simple.

I hate freezing. I am very sensitive to the lidocaine and it really stings and burns a lot. Maybe this is just normal and I am a wuss, or maybe I am more sensitive than others, but I find it painful. Anyway, he freezes me up and starts to yank and dig and yank and dig. He tells me that I will feel pulling and pushing but if I feel any pain, to let him know. Each yank gives a searing, sharp pain closer to my neck area, and I react with a variety of sounds from sucking in air, to gasping, to ooooh, and finally to a very audible OUCH!! He pauses and says, are you feeling the pulling or does it hurt? Duhh! It really hurts, I tell him. "More freezing" he instructs the technician.

So we try again, more tugging, more pain. I tell him it is up by my neck that it hurts. He feels around and says, "more freezing". This time he injects it closer to my neck and I know he's finally figured it out. <Sigh> Lots more snipping, tugging and ouches later the technician proclaims "it's out!". We all let out a sigh of relief.

The doctor explains that the cuff was not where he expected it to be and it was much closer to my neck than the exit site. He had to make another incision to access the cuff and excise the scar tissue. He laughed and said, "this tubing had become very attached to you" and I replied, "I understand, I am a very likeable person!". Chuckles were had by all. LOL!

Anyway, I think I counted 3 or maybe 4 stitches, as the thread made an audible squeak as he pulled it taut to knot it. Nice!

They dressed it and had me apply pressure for 10 minutes to stop the bleeding. A nurse came in at the five minute mark to ask how I was doing. She said, "I heard you had quite an ordeal", which confirmed my suspicions that, once again, I had transformed a simple procedure into an adventure. Always the over-achiever!

In any event, I am now tubing free and will be able to get totally soaking wet in about a week, once the stitches heal at the new incision and the steri-strips fall off the exit site. I will now have 3 battle scars to remind me of my bravery! :) (No, I don't care about the scars! -- I have earned them all!)

Another Update...this time from Home Sweet Home

Well, Blog Followers, it's been a while. I just haven't felt up to typing during the last few weeks. I am still battling nausea, although it seems to be getting better. Slowly...in a two steps forward, one step back sort of way. One day I will be only slightly nauseated and the next finds me retching my guts out. Damn chemo! It saves your life but asks for so much in return!

With my newly rebooted immune system, I should feel amazing, fresh and new! Like a shiny copper penny. Instead though, I feel like a penny that has been put through one of those souvenir machines...I came out shiny and new, but squished into an oval and embossed with "Juravinski Cancer Centre".

In any event, I am doing well. I get up every morning feeling refreshed and usually nausea free. I have my pills and my yogurt and fruit and sometimes a coffee, if I can stomach it...and then I start my day. This generally involves sitting on the porch or patio with my Ipad until I feel so nauseous that I have to lie down...usually around 10:00 and then that is where I am most of the day.

Yesterday, after lunch, I felt pretty good so I asked Al to go for a walk with me. We got about 4 houses away and I decided it was time to turn around and go back. I was quite pleased with my achievement! You see after lying in bed for nearly 3 weeks, my muscles are not very strong. I am looking forward to being able to get into the pool and "bicycle" around on a pool noodle to build up my legs.

My central line comes out on Monday. Once the stitches are healed, I can get the area wet. A real shower!! Not one with Press and Seal stuck to my chest and shoulder! LOL!

I appreciate all the good wishes, positive energy, cards and gifts that I have received from you. It has certainly helped my spirits but also, I had a fantastic report from the doctor earlier this week. My blood work all is in the "normal" range! He was super impressed with how well my new bone marrow is working.

I am still very susceptible to viruses and bacteria, so I have reluctant to have any visitors until I feel much stronger. Maybe several weeks yet. I wore a mask when I went to the lab at the hospital on Monday and it made me feel extremely nauseated, so I can't even make those compromises yet in order to see people.

In another couple months the doctor will run some blood tests to see what level of remission I have obtained. This will then require me to decide on whether I go on maintenance chemotherapy for a couple years to try to maximize my remission period. More about that when it is time. :)

For now, I am focussed on resting and healing. With all the love and positivity I am getting, I will be better in no time. Thank you all for that!

Checking in from the Spa

Well, here I am at the Juravinski Resort and Spa...been here for 10 days and no facial or pedicure yet!

I do have to say that the Juravinski Cancer Centre is a great place to be sick. The nursing staff is top notch and either a doctor or nurse practitioner is in every day to see how I am doing and to answer questions.

I have just come through a difficult bout and I am not sure it is over yet, but this morning I am feeling pretty good so I thought I should write a bit.

For the past 7 days I have maintained my sanity through regular gravol drips around the clock. This was augmented by a variety of other anti-nausea drugs that had minimal effect. The nausea was overwhelming. I just wanted to sleep the entire time so that I would not feel so sick.

The way this procedure works is that the melphalan chemo kills off the bone marrow and the stem cells eventually make their way to the bones and start making new marrow. It takes about 10 days for the new marrow to begin producing blood cells. During this time my cell count levels slowly drop and then suddenly crash or bottom out at near zero. After this happens my body starts to create that bone marrow and the numbers will start to rise again. I am at day 2 of bottoming out. It should be clear sailing ahead.(Haha)

My day nurse did not bring anti nausea meds, nor did she hang a gravol drip. I am only mildly nauseated, so I think I will ride it out for a bit today and see how things go.

I cannot wait to get home, sleeping in my own bed with my sweetie curled up behind me. I dream of being outside and of eating fresh juicy fruit.Seriously! Juicy summer peaches, cool crisp watermelon, blueberries, plums, concord grapes......mmmmm......so much to look forward to during my recovery.

I should rest now. Nitey nite!

good bye bone marrow and hello stem cells

Yesterday I had the nasty chemo, Melphalan, which will - or maybe already has - eradicated my bone marrow. Capitol punishment for producing cancerous blood, I guess. Later today, around 2:30 a rescue mission of my own stem cells will be reinfused into my blood and will migrate to my hip bones, ribs, long bones in arms and legs and will begin to set up their little bone marrow factories. It will take about 10 days for the new marrow to begin making new blood cells. This is called engraftment. Once I start to make my own blood consisting of platelets and antibodies, we will determine when I can safely go home to continue my recovery.

The Melphalan left me tired, but it waits about 3 to 5 days to release its wrath. I am expecting nausea and vomiting and diarrhea. Additionally it will cause mucositis which is canker type sores throughout my mucous membranes. I chewed on ice for about 2 hours yesterday before, during, and after the Melphalan infusion. This will reduce the chances of forming mouth sores, but nothing can be done about the sores that will develop from my throat down through my stomach, intestines and bowel. NICE!!

Did I mention that I need to lose about 50 pounds? LOL! This was not the weight-loss program of choice, but it will do. :)

Going to have a nap now. I did not sleep well at all last night. Not sure why...was not worrying...just could not fall asleep. (even with painkillers and sleeping pill)

Thanks again for all the positive thoughts.

I you are not a Google Plus Member you cannot leave a message or comment on this blog. You can email directly at lcampbell103@cogeco.ca  or on Facebook under Linda Paul Campbell. My dear friend, Nicole is developing a web-site for me to move this blog to...I just have to give her some info before she can get it done. I will keep you in the loop.

Talk to you later. Big Hugs!

Getting ready

I am starting to put my hospital bag together and it really hits me that I am going into the hospital next week for 2-3 weeks...and this is MAJOR!

People ask me if I am scared or anxious about the procedure. I am surprisingly calm about everything that is happening...and I have been from the beginning of my treatment. I am confident that the stem cell transplant will work, so I guess that is why I am not afraid.

I know I will be very sick in the next few weeks. I know that I will be very weak in the coming months. No going out to the mall, or for DQ or Menchies (dispensaries of anything are a no-no), no Friday night Johnny Rocco's calzone...no casino or movie theatre evenings...not for a long while. :(

I am sad and frustrated that this is happening to me at this point in my life, but I am not afraid. I have so many friends and I have wonderful family around me that I feel so strong - physically, mentally, emotionally. I can and will do this. :)

I will have my Ipad and laptop at the hospital and will be subscribing to the Internet package (rip-off) so I will be in contact with all of you in some form or another.

I love you all for caring about me. Caring enough to read my blog and check in on me. I am truly blessed for each and every one of you.

BALD

I had enough of the shedding and the patchiness of my head, so I shaved it all off. It was more emotional than I thought it would be, but I think it was more the realization that I did not have control of it all any more.

Being bald is not the issue...that it was not on MY terms is the issue.

Cancer sucks. Enough said.

I am finally shedding....

Before I started chemo I had my hair cut short. I was not allowed to colour it so I had to have most of the highlights cut out. The chemo I would be on for the first 4 months did not necessarily cause hair loss -- thinning -- but not full chrome dome. Once I realized how the chemo affected me physically, I decided to have it cut short as I wanted to reduce the work I needed to put into keeping it looking nice. Just before I had the high dose chemo 2 weeks ago I buzzed it off. (number 3) Total freedom! I waited for my hair to fall out...nothing...so I needed a haircut and buzzed it on Wednesday night to a number 2. Today, exactly 2 weeks from the chemo infusion, my hair has started to fall out.

Now, I have been waiting for this to happen. Looked forward to it...to the ease of getting all put together in the morning. I knew that it would come out in clumps and not all at once...but this is really starting to annoy me.

I am shedding all over...and yet when I washed my hair, it did not all come out. About once every couple of hours I take the sticky paper lint roller to it. (I can hear you laughing!) I fill up two or three sheets, then wait for more to become loose. Why doesn't it just go "sproing" and all fall out. Then you just have to sweep it up and you are done! So many aspects of cancer are just not fair!

Stem Cell Harvest

Since I started this journey all of my efforts have been leading up to my body producing its own stem cells for my transplant. 

It started with 4 months of induction chemotherapy, which beat down my cancerous blood and bone marrow. 

This was followed by one high dose of mobilization chemo to persuade my bone marrow to cooperate during the pre-harvest stage. 

Next I received 2 shots of neupogen a day for 9 days which told my bone marrow to over-produce white blood cells. On day 10, I went to the hospital for "harvest". There were 2 days blocked off for the collection process. I was hooked up to a machine that cycles my blood through a centrifuge that separates the stem cells and plasma. The doctor needs 5 million stem cells for each of 2 transplants, so I had tall orders. I went at this with gusto and produced 12 million stem cells in the first day. Not only did get a pass on the last 2 shots of neupogen, but I did not have to go back for another day of harvest. :)

This did not come easy though. I was warned that on or about day 7 of the neupogen shots my bones would become stressed with the over-abundance of blood cells and it would be quite painful until the bone marrow decided to push the cells into my blood stream (approximately 24 hours later). I was given a prescription for synthetic morphine. Friday around noon I developed severe pain in my lower back. I started on the morphine regimen (2 pills every 2 hours) and still endured considerable pain for the next 24 hours. After that a more general bone and joint ache set in and Tylenol 3's were able to tackle that pain for me for the next few days.

The next step begins on May 20th. I will be admitted to the hospital and begin the process of destroying my bone marrow and immune system then transplanting those stem cells back in to rebuild it all. I can't wait to get it started so that it gets finished. :)

Central line

On Tuesday I had my central line put in. The clinic was running behind as they were dealing with an emergency case that had just come in, so we were delayed 4.5 hours. It was frustrating, but also comforting to know that if I had an emergency, they would drop everything to help me too.

The procedure is not complicated and is performed by a radiologist. He checks with ultrasound to find a good spot on your jugular vein in your neck and then freezes you up across your collar bone. The line goes into the jugular and is threaded down into your heart and then the other end is tunnelled under your skin across your collarbone and out by your shoulder. Two tubes come out of it and they used them to take blood and to administer medications yesterday. They will use them to filter my blood during harvest of stem cells on May 5th.

It was pretty sore once the freezing came out, but it is much better now. I keep making it bleed at the exit site because I am doing too much...but I am stubborn and insisted on doing laundry on Thursday! If I feel I can I will do it! Don't worry, my mom is coming later this morning and she will lay down the law!

Gotta go...gotta drink my cat pee now. (See previous blog post for details.)

Cat pee on a cranberry bush :)

Here I am up at 3:40 to take an anti-nausea drug 20 minutes before I have to take another drug that protects my bladder from the effects of the high dose chemo I had yesterday. It was given intravenously yesterday and I had to drink it at 10:00 last night and again at 4:00 this morning. It tastes vile. It smells like cat urine. Seriously! I can only imagine it tastes like it too! I can mix it with another liquid to try to mask the taste, but it is more than one gulp already...so you don't really want to make it a 3 gulper...I used cranberry-grape juice the first time...I think I am going with the pure organic cranberry juice this time. Very tart but hopefully it will make the taste better. 

Bottoms up!

An aside about Al

This isn't really about me, but I wanted to write about it.

One year ago yesterday my husband had a heart attack and cardiac arrest. He is fine now, but we learned a number of lessons that I think should be shared.

First, Al had some symptoms that he tried to ignore. A heart attack can present itself in many different ways...it is not always a crushing pain in the chest. He felt like he had a pulled muscle. He had been doing some heavy lifting the day before and attributed it to that initially.

Once he realized that the discomfort wasn't going away, he decided to drive himself to the hospital. He expected that if it was indeed a heart attack he would have time from when it got "bad" to pull over and call 911 if necessary. This was a bad idea...and he realized later how quickly things can turn bad. He could have crashed his truck and injured a lot more people in the process.

When he left work, he did not tell them the full truth about why or where he was heading. He said he did not feel well and was going home. He did not want a fuss to be made or for someone to call 911 and take him out on an ambulance stretcher. In retrospect, you should go for that option rather than risk dying in your office and being found too late. I know that sounds morbid, but I need to get my point across with impact.

At least he called me when he was on his way and told me what was happening. I met him in emergency and the doctor confirmed that he was having a heart attack. He was not in a lot of pain and was not making a fuss, so the doc and the nurse both left him alone while they went to arrange an ambulance transfer to Hamilton's Cardiac Investigation Unit. I was with him and we were chatting when he suddenly felt quite ill. He told me he did not feel well and he remembers telling me "Oh, this is not good" just before everything went dark. He had a cardiac arrest.

During a heart attack, you usually remain awake and aware of what is happening around you. Cardiac arrest however, means that your heart has stopped. STOPPED. Flat-line. DEAD.

He immediately turned grey. I waited a bit for the nurse or doctor to show up. Afterall, he was on a monitor and they knew he was having a heart attack...they should be right there...right? No-one came. I called out for a doctor or nurse. No-one came. I called for HELP!! No-one came. I ran down to the monitoring station. There was no-one there. I called out for a doctor or nurse. There was no-one. I ran back to Al and he had not magically revived himself. I was panicked. I knew there were only a few minutes before the point of no return. I do not know CPR and could not have done it anyway since I was recovering from surgery on both elbows. I decided to go into the main hospital to find some help. I found a paramedic and grabbed his arm and asked him to help me. (Probably more like I dragged him with me and told him he had to help me.) He saw the situation and immediately hit the code blue button, dropped the bed down, and started CPR.

The lesson here is that you cannot leave your loved one alone. You cannot assume that because you are in a hospital that medical staff will be there to respond when needed. The patient needs an advocate by their side. Blame it on budget cuts or apathetic staff...or whatever...it happens. The nursing staff cannot be everywhere at once. If I had not been by his side and found someone to help, Al would not be here right now. As it was, a lot of time had passed before he was breathing again...and I was right there went it happened.

This also relates back to the issue of driving yourself to the hospital. It was a split second that Al went from chatting to dying. If he was driving when this happened, there would be no chance for him and he might have taken out others in the process. Don't drive yourself to the hospital!!

Another lesson...when you enter a hospital room or cubical...look for the call button and the code blue button. This way, you know where they are if you need to find them in an emergency. Otherwise you are too panicked to think clearly and see them.

After a few minutes of CPR they used the defibrillator and brought him back. He felt like he had a few seconds of a "nap" and was surprised at all the commotion at his bedside. He was taken to Hamilton and they placed a stent in the one blocked artery. He has been great ever since!

The big lesson here is that you should not take anything, or anyone, for granted. Life, as you know it, can change drastically within seconds. Live life to the fullest everyday and be grateful for all the blessings in your life. I know I am.

Prep Work

Al and I attended the "Family Meeting" at Juravinski Cancer Centre yesterday. This is a mandatory meeting with the doctor and the Stem Cell Transplant Coordinator. There were no surprises for me, but I am well read on the topic. The coordinator was pleased with the level of understanding that Al and I had, and I can only imagine how difficult this session is with some folks.

The doctor is very pleased with the level of response I have shown during induction chemo and is confident that I will respond well to the transplant. My blood work looked good and the ultrasound of my heart showed that everything is normal. (No hard, cold, piece of coal, Al!)

The coordinator went over the procedures that I will be subjected to over the next few weeks and then the transplant procedure in detail. We talked about risks and what to expect during recovery. It is not going to be an easy ride, but I bought a ticket anyway. :)

My next procedure is next Tuesday, and it will be to insert the central line catheter into my chest. A nurse will come the next day to change the dressing and then will do so once a week after that. The nurse will teach me to flush the line myself and this is required daily. The line will remain in place for about 2 months. (I told the doc that it better be out in time for me to enjoy the pool!!)

On Friday (the 25th) I have a full day at the hospital. I will be given IV fluids then about 2 hours of high dose chemo, and then fluids for the remainder of the day. The cychlophosphamide chemo is the one my doctor took me off early due to bladder irritation. Now I will have a high dose, so not only will I get lots of hydration that day to flush the bladder, but I will have a nurse for the following 2 days at home to provide extra fluids through IV.  They compared it to the flushing of the radiator in your car. LOL! I had the option of foregoing the chemo altogether due to the risk of a recurrence of the bladder irritation, but I did not want to cut any corners and want the best possible outcome, so if it means I have cystitis again for a week or so, so be it!

The Neupogen shots begin on that Saturday as well. 10 days of shots...not into my IV line unfortunately...and apparently they burn. I am pretty used to this as the Velcade was much the same, but that was once a week. I get this one every day for 10 days. Apparently, around day 7, I will be in a significant amount of discomfort as my bones become engorged with all the extra stem cells. Once they are released into my blood stream I will feel better (about 24 hours later). I have a prescription for some heavy duty pain killers so I expect this will be no walk in the park. :(


On Monday, May 5, I spend the day at the hospital for harvest. If they get enough stem cells that day, I don't have to go back the next day for another harvest. The harvest is a painless process during which they route my blood through a machine that separates out the cells that they need for my transplant. They freeze my stem cells and store them until I need them back.

I also found out that Juravinski does not have free WIFI...(St. Catharines does)...so I am not pleased. LOL. I need to remain connected so I will have to look at some options. 2-3 weeks is a long time to be without internet connectivity!! :)

I will post more on the transplant procedure later. This is enough technical medical info for you in one shot. :)

Duhhhh

I know I have commented on how I get "foggy" sometimes...and I do not drive unless I am sure I am up to it...which is not very often. I have a great example of just how stunned I get.

Last week, my sister Michele and her family were in Niagara. She took me to chemo on Thursday morning. I had to register on the ground floor and while I was waiting in line, Michele was scoping out the waiting area.

At one point, I looked over and thought to myself...."OMG, that woman looks just like my sister, Michele!"  A few seconds later I was shaking my head saying "duhhhh!" Of course, it was my sister. She had brought me there.

Baby Bird Flies Home

My son is coming home for 3 months to help care for me. He took a job 3 years ago in Osoyoos, BC and loves it out there...but there were various circumstances that made it difficult for him to want to stay there. The most significant one was last April when Al had a heart attack and cardiac arrest. Mark was only 23 years old...the same age Al was when his father succumbed to the same medical trauma. Unfortunately he was not able to be revived. For Mark, this shot of reality regarding his father's mortality hit him hard. A short 7 weeks later, Al and I were out west telling him that I had cancer. Once it was determined that I needed to begin treatment, Mark decided he wanted to come back to Ontario to be here to help us. In August he submitted a transfer request citing compassionate grounds relating to my health condition and concern for his father's ability to manage this load himself.

I have family, but my brother Raymond is in Ottawa, my sister Michele is in Summerland, BC, my sister Christine is in Kelowna, BC, and my parents are almost 4 hours away in Port Elgin. The brunt of the care-giving lies on Al's shoulders. His bosses have been great to allow him the time to take me to appointments (I have blood work every Wednesday and Chemo every Thursday along with additional appointments with 2 oncologists). However the time he misses on those days leaves him with work that still needs to be done at some point...either in the evening or on the weekend. In addition he is not sleeping soundly and is in denial about the toll this is taking on him. Having Mark home would have been a god-send this past 4 months. Kaila was home for a few weeks to help out and she calls me every day, but she is not in a position to be able to drop everything a move back. Nor would I want or expect her to. I get much more comfort knowing she has a good job and is establishing a life for herself in Calgary. :)

Mark submitted his transfer request and several follow-up emails since then and was never provided an official response regarding if it was even being considered. When he contacted the highest ranking official in his region outlining his situation and practically begging for a response, he got an apology and assurance that he would have a response within a week. That was in February. So he decided the only option left for him is to take a leave of absence from work and come to Ontario to help out during the critical time in May, June and July. It will be necessary for me to have 24 hour care for this time period and one care-giver is just not enough. If one of them contracts even a common cold they cannot have contact with me.

Al and I each have over 30 years of service with the federal government. We both hold senior positions in our respective departments and have been exemplary employees. This is not what we expected.We did not expect special treatment for our son but just the courtesy of an honest and compassionate response to his request. (As any employee should expect.) If it was not possible at that time, just say so. Manage expectations. Show compassion for the situation. How disappointing. The "employer of choice" certainly has some self-assessment and improvement to do.

In any event, Al will fly out to BC in late April and help Mark move out of his house and drive back to Ontario. He rents a house with his friend and co-worker, Dave, who just build a new house in Penticton and is moving in mid-April. Mark has no idea when or if his transfer will come through so he will not be seeking another apartment or house at this time. He will move his possessions back in a U-haul and determine next steps after his leave is up. Surely he will have an indication of when or if his transfer is being considered by August of this year!

While Al is out west and travelling back across the continent with Mark, my parents will come to stay with me. I will have chemo and then my Neupogen shots during this time so I will not be feeling well. This means that both my parents have to take time off work (neither gets paid if they don't work) to come to care for me.

Cancer has such wide-spread impacts and implications far beyond the medical ones. Everyone is affected. I hate that I must rely on so many people for so many things. I have always prided myself on being independent and self-reliant. This is difficult for me and for everyone else. But we do what we have to do. My friends send messages of hope and happiness and love to lift my spirits and others offer their time and assistance to get me to appointments and give Al a break. I have a difficult time accepting assistance, but it is a necessary evil. It will only get more intense in the coming months.

I am thankful every day for the wonderful people in my life who give so much to me. I will need to be sure to give back in some way when I am able.

Quid Pro Quo

The worst part about cancer treatment is the side effects of the drugs. It really is a give and take relationship. (Hence the title of this blog post.) This post may not be of interest to everyone, but I find it interesting.

I have mentionned the challenges I have faced with my steroids already in previous blog posts, so I won't go in to a lot of detail here...but Dexamethasone's most common side effects are:

Increased appetite

Irritability

Difficulty sleeping (insomnia)

Swelling in your ankles and feet (fluid retention)

Heartburn

Muscle weakness

Impaired wound healing

Increased blood sugar levels

In my case, it has contributed greatly to my 30+ pound weight gain, puffy face, and dry eye syndrome. My challenges with hyperactivity, insomnia and crashing are noted in other posts.

The oral chemo drug I am taking is Cyclophosphamide (Cytoxan). Its most common side effects are:

Cough or hoarseness

fever or chills

lower back or side pain

painful or difficult urination

Blood in the urine

dizziness, confusion, or agitation

fast heartbeat

joint pain

shortness of breath

swelling of the feet or lower legs

unusual tiredness or weakness

I have tiredness, dizziness and confusion, and have developed cystitis (like a mild bladder infection only it doesn't go away with antibiotics). This is a concern as it is also known to sometimes cause bladder cancer down the road. :(

The other cancer drug I am taking is Bortezomib (Velcade). It is a shot in my subcutaneous stomach tissue. The most common side effects are:

• Fatigue, generalized weakness
• Peripheral neuropathy: characterized by decreased sensation and paresthesia (numbness and tingling of the hands and feet). 
• Nausea and vomiting
• Diarrhea
• Poor appetite
• Constipation
• Low platelet count. This can put you at increased risk for bleeding.
• Fever
• Low red blood cell count (Anemia)       
• Headache
• Difficulty sleeping (Insomnia)
• Joint pains, arthralgia, myalgias
• Swelling of the face, hands, feet or legs (edema).
• Low white blood cell count. (This can put you at increased risk for infection.)
• Shortness of breath
• Dizziness
• Rash (see skin reactions)
• Dehydration
• Upper respiratory tract infection
• Cough
• Bone pain
• Anxiety
• Muscle cramps
• Heartburn
• Abdominal pain
• Low blood pressure
• Itching
• Blurring of vision

So, this one has given me peripheral neuropathy. My feet constantly feel like I have just walked over a hot pool deck or roadway in barefeet. Tingling, burning, and some of my toe-tips are numb. Sometimes my finger-tips get numb and tingly too. I have also experienced the stomach issues -- from acid reflux to nausea to diarrhea to constipation. My dry eye syndrome and blurred vision may be a side effect of this or of the Dex...or likely a bit of both. My skin is dry and itchy - especially my scalp. I no longer take my blood pressure medication though...LOL...It keeps my BP at a high-normal level. Almost passed out a few times before I realized I shouldn't be taking my BP meds anymore.

The Pamidronate that I take once a month for bone integrity has the following side effects:

Abdominal or stomach cramps

black, tarry stools

bloody in the urine or stools

blurred vision

chest pain

chills

confusion

convulsions (seizures)

decrease in the amount of urine

dizziness

drowsiness

fainting

fast or irregular heartbeat

fever

headache

increased thirst

loss of appetite

muscle pain, cramps, spasms, or twitching

nausea or vomiting

nervousness

noisy, rattling breathing

numbness or tingling in the hands, feet, or lips

pinpoint red spots on the skin

pounding in the ears

shortness of breath

slow or fast heartbeat

swelling of the fingers, hands, feet, or lower legs

trembling

troubled breathing at rest

unusual bleeding or bruising

unusual tiredness or weakness

vomiting of blood or material that looks like coffee grounds

weight gain

I have dizziness, drowsiness, confusion, blurred vision, weakness, weight gain, etc...but they could be from this or the other drugs. :)  The thing about pamidronate is that it can cause jaw bone death...so I cannot have any dental work done while taking this...and I will be on it for up to 2 years likely.

Anyway...this blog post was not meant to be a litany of my ailments...but just to indicate that for every "miracle cure" there is a hefty price to pay. All of the cancer drugs are themselves carcinogenic...or may cause secondary cancers. You have to weigh out your options. For me, being overweight, with puffy red eyes, blurred vision, burning feet, and painful urination is a small price to pay for the return on investment I will get. It may not be pretty right now, but it will be worth it all in the end.
:)

What's Next?

Last Thursday was the 13th installment in my induction chemo plan. This means I have only 3 more treatments and then I prep for the stem cell transplant. :) The great news is that my total protein levels have been reduced from 18 to 2. Almost cancer free. :) Doctor was impressed and said I am technically ready for the transplant now (the goal of induction chemo is to reduce the cancer leading up to the collection of stem cells) but we may as well complete the planned course.

I will have my last chemo treatment (cytoxan, velcade and dex) on April 3rd. I will still need to go in on April 10th for my pamidronate (monthly IV to combat bone loss).

The next step is the "info session" with the doctor and transplant team on April 15th. At this meeting they go through the process in detail and we sign off on the procedures.

On April 20th I have the central line put into my chest...this will facilitate the high dose chemo, harvest of stem cells, reinfusion of stem cells, and any blood transfusions that may be necessary during my hospital stay. It goes in just below my collar bone and stays in until my white cell count is safe.

On April 25th I have high dose Cytoxan chemotherapy (the same one I am currently taking orally). This is my mobilisation chemo that preps my body to make lots of stem cells. The day after this chemo I will begin Neupogen shots every day for 10 days. This stimulates the production of blood cells and stem cells. A nurse will likely come to my home each day to administer this shot.

At the end of 10 days, on May 5th, I will go to the hospital for "collection" or "harvest". They will hook me up to a machine like a dialysis machine and re-route my blood to sift out the stem cells. That night they will call and tell me whether they got enough or if I have to come back for a second day of collection. They collect enough for 2 transplants. One for now and one to keep in the bank for later. (If you have read about Multiple Myeloma you will know that it is not yet curable, so after the transplant I will go into remission, but the MM will become active again. At that time, we will likely go through this process again - unless a new protocol has been developed.)

After collection I think I have a little break. :) I will be admitted into the hospital on May 20th for the transplant. I believe the process is for me to settle in on the first day, melphalan chemo on day 2. This is the nasty chemo that kills the cancer and destroys my bone marrow at the same time. It will make me very sick starting about 3 days later...and lasting for several weeks.

The next day I get my stem cells back. The process of engraftment then begins. This means that the stem cells make their way to my bones, and set up bone marrow production shops. It takes several days for this to start to be productive and once that happens, my white cells will start to increase. During this time, I will have no immune system and will be in the hospital in a sterile environment.

Once my white cell count is safe, I can go home. This will likely be about 2 weeks after my transplant. This is still a dangerous time...and I will be vigilant to ensure I do not get an infection or virus...so don't plan on visiting me in June. :)

I will be very fatigued and vulnerable to infection so I will be doing very little except resting over the summer. :) By early fall, I should be strong enough to start visiting and doing more. :)

That's it in a nutshell. I am anxious to get going on the next phase. This last 3 months has gone by very quickly, so I anticipate that the next will as well. I will try to keep up with my blog posts as best I can.

What's up, buttercup?

As the date for my stem cell transplant gets closer I am starting to feel a need for nesting. 

I am the one who looks after the finances and the running of the household, so I am trying to put it all down on paper for Al to take it over during my upcoming time of incapacity. For the most part it will look after itself...since I have scheduled payments and auto-payments already set up for most everything, but just in case there is a glitch, he needs to know what needs to be paid and when.

My first Disability payment finally showed up in our account, but it was for an incomplete month, so I don't yet know how much "net" it will be each month. I was relieved to see that my calculations for income tax deduction for last year's disability period was pretty close so I don't owe a lot. :)

Aside from the financials, I am slowly working my way through all the closets and drawers to tidy up and declutter. If things are orderly then it will be easier for people to find things when needed. The last thing I need is to trying to figure out where I stashed the summer sandals in the sea of Rubbermaid bins in my basement while I lie in a hospital an hour away. :) The joke in our house has always been that I am "the only one who can find an f'ing thing". I need to pass the torch.

So I am busy making my lists, labelling boxes and bins, and spring cleaning. I am actually enjoying it -- if only I was feeling up to working on it every day. The one day on steroids as opposed to four is great in some ways, but not in others.

For one, the steroids kept all my aches and pains at bay. Now that I am on one day a week, all those pains are coming back. The arthritis in my neck, lower back, feet, and fingers is back. The inflammation of my right elbow is back.  I am having headaches again. And then there is the EYE. My left eye is swollen and red. It is part of the dry eye issue, but during the 2 days that I feel the effects of the steroids, my eye pretty much clears up, only to return as the steroids wear off. It is really annoying!! Not to mention that I look like a freak show!! :) My husband deserves a medal...he sure didn't sign up for this!

Also, the 25 pounds that I put on during the high dose steroid treatment is not going away. In fact, I weighed myself this morning and have broken another record. Now it might have something to do with the yummy butter tarts I bought the other day at Harvest Barn. I have eaten 4 of the 6 in 2 days...but hey...there are few pleasures in my life right now. :)

Four days of steroids meant a good 3 or 4 days of energy and coherent thinking. Now I get one and a half. (Fridays and Saturdays.) The crash is much the same -- Sunday, Monday and sometimes Tuesday. Wednesdays I feel realtively normal, only to have the cycle begin again on Thursday.

All in all, this article is full of bitching and whining, but I have not lost sight of the fact that I am very fortunate. I cannot imagine what it would be like to be battling cancer while looking after others. I do not know how a mother of young children - or even teenagers for that matter -- could do it.

If you know someone who has a young family and one of the parents or a child is ill, please help them. Do their grocery shopping, or clean their house, or do their laundry for them, or drop by with a pre-made dinner. Don't wait for them to ask you (because they won't), just tell them you are doing it.

I am so fortunate to have the day to myself and to casually go about the household chores that need to be done. I have the luxury of resting whenever, and for as long as I need to, or want to. It is also really easy to convince Al to go out for dinner, or order in, if I did not feel like making anything for dinner. This could be so much harder than it is. :) For that, I am blessed.

getting wiggy

My hair is falling out. I see it everywhere....and have taken to wearing a hat when I am cooking. I have one of those white chef hats. :)   <giggle>

The really funny thing is that you can't tell I'm losing my hair by looking at me. I have soooo much hair, that even though it is falling out like crazy, I have no bald spots.

This is good and bad. Good because I can still rock the pixie cut...but bad because my head is always itchy or sore and I leave hair everywhere. I am now at a crossroads...do I shave it off completely? Seems like a shame when I have a full head of hair still. But it is really annoying me.

I have one wig - just got it today - and am working on getting another. Once I have some options and feel comfortable with the wigs, I will have to make a choice. (At least I have a choice!)

Until then, you just never know what I may look like. :)

The long and winding road...

Sometimes the journey becomes tedious. I am finding it so. <sigh>

I think the weather is a major culprit...that and the ice. I am afraid of falling so I do not venture out beyond the mailbox across the street. Sometimes I just stand on the front porch to get some fresh air. :) Another few weeks and hopefully the ice will be gone and I can get out walking. that will do me a world of good!!

I have not been feeling the greatest...there was a change in my protocol and I am no longer on high dose steroids 4 days on 4 days off. I now take steroids along with my chemo and Velcade one day a week. This was the first week so it may not be typical, but I found I was fine on Thursday (chemo day) and Friday but did not feel well Saturday, Sunday, and not so great again today. Since steroids provide some anti-nausea effects, maybe not being on as much steroid made my stomach feel a little more upset. I also have no appetite. (My fat cheeks are grateful...LOL) It is hard enough to find beverages that taste okay that are also not chock full of calories and sugar...so now to force myself to eat as well is a chore.

Since I weighed in last week at an all-time record high, I should be grateful that I am not as hungry now. :) Yes, I have gained back all the weight I lost on Jenny Craig two years ago. :( But I am happy I have the extra pounds for a buffer for times yet to come where I will be unable to eat well.

The doctors are very happy with my progress to date. One of the indicators of multiple myeloma is the level of immunoglobulin in your blood. These are proteins that normally fight infection. With MM, my bone marrow is making an imperfect immunoglobulin (Ig) of the Gamma variety...so my IgG levels were increasing -- which alerted the doctors to my condition initially. My levels did not ever reach 30, which is a tipping point of sorts. (There are several factors that determine the point that treatment is needed, and this is one of them). Before I started treatment I was around 27. Ideally, we need to get to 0 before my "harvest" but the goal is to be below 5. My IgG levels 2 weeks ago were at 7.95. :) This is really good progress considering I am only half way through my induction chemotherapy protocol. (Induction is the period where we try to reduce the cancer as much as possible leading up to harvest.)

I will get another more concentrated infusion of the same chemo I am currently on (cyclophosphamide) just before the neupogen shots begin. (Neupogen is the drug that stimulates my bone marrow to produce stem cells.) I will have 10 days of shots then will be ready for harvest.

After harvest I will have the melphalan chemotherapy (the really powerful stuff) that will kill all of my bone marrow (good and bad) and reset my immune system to that of a newborn baby.

I expect to have all of my dates for this later this week, but it looks like we are on track for the transplant to occur in early-mid May...meaning I will be home in early June. Approx 3 months after the transplant I will be able to lead a fairly normal life -- other than masking up when in public, and getting fatigued easily....so hopefully I will be able to visit with some of you then.

The journey is long, but I am plodding along.