Fourth cycle update

Again a slightly longer break between posts than I would have liked but the reason is that I've been quite unwell and motivation seems to be a problem.
Day 6 was particularly hard, I was curled up in bed nearly all day with stomach cramps, diarrhea and nausea. The following days have been only slightly better, but I have managed to get out of bed and pretend to live a normal life. I hate spending extra time in bed, they are wasted days no matter how comfy the bed may be. Last night I even vomited, just the second time ever from chemo.

My fatigue levels, cough and dyspnea have slowly worsened as my dose of prednisone has been reduced. Late last week I spent four hours re-reading my blog from day one and a pattern emerged.
Particularly in 2009 when BOOP first took hold but was un-treated and undiagnosed by the specialists. Through out that year I complained of a persistent cough, low grade fevers, a loss of appetite, chills and sweats.
I had several CT scans that year that indicated that I had no active lymphoma, so you'd have to assume these symptoms were related to a lung condition. I made that suggestion to my doctors in June of that year but it was ignored.

I once again have these symptoms coincidentally appear now that my steroid dose has been reduced, and once again the specialists aren't reading their notes and are suggesting it's linked to lymphoma.
In 2009 I self treated with prednisone and got a complete response in a matter of days. However I was not allowed to continue the treatment and my doctors suggested that if I had lymphoma then steroids would also give a similar response. I couldn't win. A "wait and see" approach was taken and as a result I developed lung fibrosis from the untreated pneumonitis.(BOOP finally being diagnosed in late 2009 and steroids being prescribed). This lung damage now precludes me from having an allogeneic stem cell transplant. Effectively burning the last curative HL treatment option available at the time.

Last year I was told that I would be on prednisone for the rest of my life because there were no other means of treating the lung inflammation behind the now diagnosed BOOP/COP.
I had done a lot of research and came up with the option of using the antibiotic Erythromycin which has an anti-inflammatory side effect. An obscure medical paper from Japan outlined the case of a patient treated with 600mg a day that resulted in a complete response.

My doctors agreed I could try it as it couldn't do any harm. However just one week after starting I was struck down with the potentially fatal Nocardia infection and my medication was stopped after being hospitalised and put on high dose IV antibiotics. We never restarted the experiment. In fact despite having two bouts of pneumonia in a year I have not seen a single respiratory specialist since being discharged nearly twelve months ago, even though I almost begged the head of the respiratory dept at Wellington hospital to be given someone to monitor my lung disease.

So in spite of the fact that everyone thinks all my lung problems are related to my lymphoma (despite all symptoms disappearing when treated with steroids last time) I have now taken control of my own treatment. As of last Saturday I have started myself on 600mg of Erythromycin daily, taken as 3x 200mg doses. I've informed my GP so he has it on record for safety's sake and can record the results.
So far my energy levels are improving, my cough less productive and fevers are not spiking so high.

But it is early days yet and I need to get over these Adcetris side effects before a clearer picture emerges as a lot of the side effects are the same and just cloud the results.

I showed my GP the non-healing lesion on my elbow again four weeks post surgery. He said "bugger". We read the biopsy and it said something about necrotising skin cells (not fasciitis). It really wasn't much help at all, so he took a swab to see exactly what it was that was growing in the wound that was stopping skin growth.

That's enough for one post, lots more to add but those with short attention spans may well be asleep by now!  ;)

Lines.. Both canulation and those to be read between.

I'm still here, stuck in this bed. I don't mind so much anymore, home isn't the best place for me anyway.
I've taken advantage of every opportunity or service on offer. My meals are now back to where they were last time I was here for a long stay. I can order lots of extras from the kitchen. However experience had taught me to avoid the hot-dogs, chips and chicken nuggets. I dog would probably send them back.

Tomorrow I am in surgery to have two wisdom teeth removed. This would have cost me a small fortune privately but when in hospital it's free. I just told the doctors that I would be at risk of infection if left in and that I'd need extra blood and platelets for the extraction. They agreed and presto I was booked!

I had a terrible, terrible 24 hours over the period of monday night/tuesday. The doctors had commented that my fevers were resolved and that I must have had an infection that was now gone. I said "well... nooo.. lets just say I've had a couple of convenient headaches whereby I've asked for panadol". They said they needed to know if I was still developing fevers so they could see if the medication worked.

My response to them was that after 18 months of personally monitoring my temperature I could assure them that I would still be running massive fevers if it were not for the fact that I now know the warning signs (once I get to 37C+ will always run a full fever if left unchecked). Apparently my word was not good enough and they asked that I take no panadol for 48 hours. I said they could have 24 hours max as when I run a fever I get very sick with rigor, chills and coughing.

Sure enough I ran three full fevers in that 24 hour period.
During that time my IV cannula stopped working for the third time in three days.
From experience the chances of getting a new line into me while febrile is slim in the extreme.
But still they tried. After-all I have those critical IV antibiotics to be infused (the ones to kill the bugs that are supposed to be giving me the fevers ;)

Two doctors and one senior theatre nurse all tried and failed. There were six failures over a period of nine hours. To say I was over it would be an understatement! The stress of running a fever and having a continuous line of "experts" pushing a bloody great butterfly needle into your arms in the hunt for a vein just wore me out completely.
Finally one doctor thought he had it sorted. He managed to half insert the cannula into a vein in my left arm that I know to be heavily scarred and I told him this.

He suggested that the reason it would only go in half way was because it was against a valve. I said scaring. As soon as the nurse tried to flush it with saline 20 minutes later  it hurt like hell and would not flow. I had to tell her twice to stop pushing. Why is it that the younger they are the less they are inclined to believe the patient might actually know something? I told her, once she had stopped trying to blow my elbow up like a balloon, to draw back on the syringe. It wouldn't flow that way either. It was blocked.
Another failure. Two hours later the same Doctor re-appeared and had his last attempt this time under my direction. (I pointed him to the best vein and suggested that maybe hot water in a glove held against the arm would also help. This is std practice on the cancer day ward)

There's no word on my treatment plan as yet, even though I have asked. This actually gives me some hope of getting the new drug. I don't want to get my or anyone else's hopes up because there's no firm reason to support my hunch but I do read body language very well and I've seen and heard enough to realise that there's something happening behind the scenes. They too probably don't want to get my hopes up and are probably working hard in that direction but with no firm answer. I hope they succeed in obtaining it.

I checked the proposed price of the drug online yesterday... around NZ$120,000 for the full treatment, ouch!!