My new alphabet: ABVDBEACOPP

Chemo 5 is over but with it have come a series of questions that we may have to address at a given time. As a 'control freak' - that is what my elder one calls me - or an organised person - as I would like to call myself - I like being prepared for any eventuality, however bad. First of all let me bring you up to date. Chemo 5 was a an eye opener in more ways than one and also a glimpse on what awaits us. The stars have foretold a bad patch starting October and I have been scratching my brain trying to figure out what it could be. Well chemo 5 gave me a lead. Chemo 1 was bad because of the steroid in his pre meds, but 2,3 and 4 were not too bad. He came out of them after a good night's sleep. We had of course removed the steroid. Now chemo 5 has been strange. It has been more than 48 hours and Ranjan has not really  come out of it yet. Poor appetite, lethargy and what is scaring me is his dark mood. I hope it is not another depression setting in. he has been telling everyone who called that this chemo has got the better of him. Not a  good sign. Will call his therapist and see if he does not need some sessions.

But that is not all. As we are reaching midway if it is 12 and three quarter way if it is 8 chemos, I wanted to know from the doctor what we could expect. I like knowing my best case scenario and worst case scenario in all situations as a good control freak! A PET Scan is scheduled after chemo 6 and will reveal all. So if things are super better we stop at 6, if things are better but not as much as one would have wanted we go on to 12, and if things have not improved then we need to change protocols so from ABVD we move to BEACCOP. In other terms from a cocktail of 4 lethal drugs to one having 7! Phew! Now when you read: Until now, the advantage shown for the BEACOPP regimen was improved disease control, with better progression-free survival (PFS) than is seen with ABDV. However, this came at the expense of more toxicity, including a suggestion that there may be an increased risk for secondary cancers, in a serious medical article your blood runs cold. The article is disturbing as it does not give a clear cut answer but then it is in sync with chemotherapy as a whole where people talk of remission and survival in months and days, and where 15 days of extra life devoid of any quality is a statistic to celebrate. In an answer to the authors of the above article, Dr Longo in the Journal of Clinical Oncology states: it is my understanding that escalated BEACOPP is sufficiently toxic that patients older than 60 years are considered too old to tolerate it. Dr Longo ends his article by saying:  patients need to be fully informed of the various pathways to cure, their likelihood of success, and short- and long-term toxicity costs of each approach. A well-informed patient can participate fully in the decision about which path to choose. Sadly that is not always the case.

To many it may seem premature to already think so much in advance. But I have my reasons. First of all I know that as soon as the results of the scan are out there will be immense pressure to take a decision as we are in the middle of a chemo protocol and would have to decide in a matter of days. I also know that the oncologist will be pushing us to accept a change of protocol based on facts and figures. But we are not talking of a patient amongst others, but of Ranjan. What makes it terrible for me is that he trusts me implicitly. I need to be worthy of his trust.

For the past two days, after his last chemo he has been feeling low and somehow the change of colour in his nails has been a watershed moment for him as he can see the toxicity of the chemo drugs. He has been looking at his fingers and toes over and over again and been feeling upset and down. Now the BEACOPP has far worst side effects than ABVD and I do not know if my brews and potions will keep him away from the side effects. I do not think he will be able to cope with those without sinking into depression.

Mama refused chemotherapy because she did not want the side effects or the short remission(s). She wanted to live life on her terms and though she suffered in the last month of her life, she enjoyed her last year and papa's pampering. Papa trusted me and I trusted the doctors who told me he will be up and about in a matter of weeks. He died in a matter of weeks robbed of his dignity.

I was seduced then, and was seduced in July 2013 when I accepted chemo because people I trusted told me it would work. They only told me one chapter of the story. I was not given a chance to try the alternative therapies that seem far more humane and stand to reason.

I do not like the Ranjan I have seen for the last 2 days! I do not want his life to be reduced to ghastly side effects which he cannot tolerate. Anyway, if I am to believe Dr Longo writes, then BEACOPP is not good for anyone above 60 and he is 64!

I do not want to be seduced again and take a decision that I may regret and that will make Ranjan suffer. If ABVD has not given the results that one hoped for, then I would like to stop chemo at no 8 and try alternative therapies full on. Most of all I would want to get out of this symphony of life in slabs of fifteen days from chemo to chemo. I would like to see his immunity go up and get out of the house and enjoy the time we have left as. That time period is only known by the one upstairs. The only thing that would change is that Ranjan and I would live every day of the remainder of our lives as if it was the last day. What a ball it will be. And the only alphabet I want to use is God's Alphabet. The only way I want to see Ranjan is with a smile.