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.