From the Run to the Runs

 

Nearly three weeks after the elation of running the 10k and about a week after I got back from a holiday in Italy,  I got a very bad episode of sickness and diarrhoea. Oh the highs and the lows.

No one I had been with or eaten with had got it so it was something I picked up all by myself.  Sunday night and Monday day  were the worst and I had to cancel my monthly bone strengthener treatment (Zometa) at the Haematology Day Unit as I wasn’t well enough to go in and also you are not supposed to attend if you have had sickness or diarrhoea within the last 24 hours.  By Tuesday, I was getting a cold as well. I rang my GP and he suggested I take antibiotics but as it was getting to closing time it would be too late to issue a prescription. I remembered I had an emergency supply at home so he told me to take them.  I started to feel better over that evening and the next day the trend continued so I went in for my Zometa on Wednesday morning. I had wanted to go because before Zometa is administered a blood test is taken to check kidney function. I knew I was being paranoid but some of the symptoms I was feeling with the infection were similar to those I had when I went into acute kidney failure which were shortness of breath, tiredness, lack of appetite so I was relieved that my glomular filtration rate was over 90.  Relief but I am annoyed with myself for the unnecessary anxiety I felt.

It also took me back to almost the exact same time a year ago when I was admitted to hospital for 4 days with chronic diarrhoea, the cause of which was unknown. It started when I was on a short break in the Algarve. I thought it would get better when I got back but it didn’t, it got worse and so I rang the doctor on the haematology ward and she said that I should probably go to A&E. It was Saturday night and I didn’t want to go and sit for hours in A&E  so she agreed I should go first thing on Sunday morning if it wasn’t improving.

I drove myself there on Sunday morning expecting to be back in a few hours as I had planned to go with friends to the Chorlton Open Gardens Day (why I thought I was going to be able to attend that is beyond me) but I ended up being admitted, put on a drip and blood and stool samples taken.

Because of my infection and risk of infection due to just completing my last round of chemotherapy I was put in an isolation room on the Medical Assessment Unit which is a pretty dismal ward where people are put because there is nowhere else for them to go and they cant stay in A&E. I had to call some friends to bring some pyjamas in for me and some other stuff and drive my car to another car park.  The room was hot, small, stuffy and noisy.

I then got moved to a room on the acute medical ward and spent another couple of days there. it had a pay TV so at least I could watch Wimbledon. They weren’t giving me any antibiotics to treat it until they had established the cause. It was at the time of the outbursts of ecoli in Europe which was eventually linked to a bean sprout producer in Germany I think so the medics were concerned that it could have been ecoli but then ruled it out as there were no reported outbreaks in Portugal and tests were negative.

The only good thing about being in hospital is that I bumped into my haematology consultant whilst I was having a walkabout and she told me that there was good news about the results of my bone marrow biopsy which I had done the week before.  There needed to be less than 10% abnormal cells before I could proceed to the stem cell transplant stage of my treatment and when I saw her in clinic on Friday she confirmed it was less than 5%.  So I was discharged on 22 June with some phosphate supplements as my phosphates were low and then gradually got better but running to the toilet 14/15 times a day is not a pleasant experience! Below is an extract from my discharge sheet.

So with having a compromised immune system I was worried that I was going to end up in hospital again but this time my body fought it and I recovered within 48 hours and also was able to attend the Chorlton Open Gardens this year which was on Sunday 24th June. About 25 gardens in Chorlton were open to the public in aid of Freedom against Torture Charity and I managed to get round 15 of them, all of which were lovely, some of which were stunning and inspiring. Here is a photo of a pond I particularly liked.

So all good again.  I think I was particularly anxious this time because of the uncanny timing with the episode last year, the symptoms of fatigue and shortness of breath which were part and parcel of my infection which I was worried was to do with my kidneys and because over the last two months or so 4 people of around my age with myeloma that I know of have died because of serious infections. When I hear about this I feel extremely sad for them and their families, scared and down too because it is a reminder of what may happen to me. Not likely whilst in remission but I DONT KNOW HOW LONG THAT IS GOING TO LAST! I have a clinic appointment next Friday when I should find out my latest free light chain results, wish I could stop feeling anxious.

Just read a very good quote from Daily Encouragement by Daisaku Ikeda which a facebook friend posted.

The important thing is to advance brightly and strive to be victorious at each moment, right where we are; to begin something here and now instead of fretting and worrying over what will happen. This is the starting point for transforming our lives.

This was such a timely post for me, thanks RF!

2nd ASCT – Day 26 – Aredia – June 13 2012

I received my first dose of intravenous Aredia (bone building medication) today. Unlike Zometa which runs over 15 minutes intravenously, Aredia must run intravenously approximately 4 hours. The new UCH BIC is having environmental temperature ISSUES – IT IS FREEZING IN THERE, but everyone assures me they are working on the ISSUE! At any rate, the reason that I’m dressed like nanook of the north!

I slept a good portion of the time. Again, poor Jani sat in a hard, straight back chair with no blanket and waited for me.

1st Subcutaneous Velcade Injection – February 27 2012

I had my first subcutaneous Velcade injection in the back of my left arm yesterday, February 27 2012. The medicine is a bit stingy on the way in, but resolves quickly. This is a picture of my arm 20 hours after the injection. It looks red, but it does not hurt. This started my 2nd Cycle of Maintenance Chemotherapy Velcade once a week for 4 weeks.
I also received 20 mg of Dex intravenously and Zometa yesterday February 27 2012.

I start 14 days of Revlimid 10 mg tonight, February 28 2012.

Adventure in the Emergency Room – January 17 2012

Yesterday, I received intravenous Zometa 4 mg. I was gone from home 8 hours with the 200 mile round trip drive and a couple of shopping trips after my Zometa appointment. When I got home, I ate dinner and fell asleep on the sofa. I woke up at 8 PM with pain in my right chest that radiated through to my back and up the left side of neck and back of my head. The pain was alarming to me since I have not had anything like this EVER and I do have that mobile blood clot in the right atrium of my heart. I was not short of breath and I did not know what I should do. So, I took 1/2 Percocet and went to bed.

I didn’t sleep well and the pain persisted. So, once daylight came, I drove over to Ron’s place and asked him if he would drive me to the emergency room in Idaho Falls (100 miles). Fortuitously, Ron was just warming his truck up (minus 5 degrees) and was heading to Idaho Falls for some shopping. So, we went in Bart (2006 Honda Pilot) and headed across the desert arriving at the Eastern Idaho Regional Medical Center Emergency Room at 11 AM.

Bones

The FDA has released a new warning against osteoporosis drugs, stating that many of them cause thigh bone fractures. 
According to NaturalNews, the FDA has issued a new warning for *ALL* drugs in the bisphosphonate family, including Merck’s Fosamax (marketed generically as alendronate), Roche’s Boniva, Novartis’ Reclast and Warner Chilcott’s Actonel. Why does this apply to us? If you’re like my mom, then you go for bisphosphonate treatments once a month, be it Pamidronate (Aredia) or Zometa.  In a nutshell, there are two types of cells that maintain the metabolism (wearing down and growth) of our bones. Osteoclasts break down the bones and Osteoblasts build them up. In normal, healthy individuals, both are necessary and essential. However, in individuals with Multiple Myeloma, osteoclast activity is greater than that of osteoblasts, meaning that the bone is wearing down at a faster rate than it is building up. From what I know, these bisphosphonates prevent or slow down osteoclast activity, but do nothing for osteoblasts. This is all great and dandy, but when taken over time, it can cause bones to become brittle and rigid, increasing the likelihood of fractures. This is because osteoblast activity is already limited/hindered, and thus, no new bone cells are formed (instead, old ones remain). 


Back to the article…
The FDA is also requiring that consumer-friendly guides be distributed with every bisphosphonate prescription to make sure that risks are understood by those taking the drugs, and how to minimize them. Thigh fractures are a common occurrence amongst those taking bisphosphonates and come with little or no preceding trauma. They may also be followed by months of a dull, aching pain in the thigh or groin area. 
The FDA has also directed doctors to reassess whether patients should continue taking the drugs after five or more years, as they appear to offer little or no benefit after this time (but, with an increasing rate of fractures), according to Felicia Cosman of the National Osteoporosis Foundation. 
You can read the entire article HERE