A matter of choice

Some of you may think that I have made my peace with chemo as I have capitulated and accepted the 6 cycles 12 chemos for Ranjan. Far from it. When I accepted the protocol I had an intuitive aversion for chemo and did not have enough knowledge of the long term side effects. As many of us I knew about hair loss, nausea, loss of appetite, fatigue etc. But I was totally unaware of the destruction occuring inside the body. All I was told was that Hodgkin's responded well to chemo and was even cured. I wonder what I would have done if I were told: Hodgkin's lymphoma does get cured with chemo but survivors of Hodgkin lymphoma have a higher risk of developing a secondary cancer, especially acute myeloid leukemia, non-Hodgkin lymphoma, lung cancer, or breast cancer.

This is the problem with medicine and doctors today. They tell you half the truth and fill you in if you see a new side effect or if you come to know of something on your own. Oh yes that happens too is the pet answer. It is ok for the immediate side effects but no one tells you about the long term ones. You may get to know about them in an indirect manner. You may be asked to get a test on the way, and when you pester to be told why the answer is: Bleomycin can affect your lungs and so on. By then you or your loved one is in the middle of the treatment and your choice option has been already usurped.

I have watched helplessly Ranjan having his seven chemos. It gets worse with each one. During those fateful 4 to 6 hours one can actually feel the poison that his dripping into his heart via the port placed on his jugular and then seeping through his body. No matter how upbeat he is at the beginning it always ends with a tired, agitated and shocked being, one I can barely recognise. I guess the body reacts in its own way to all the poisoning it has been subjected with. The body then turns into a killing field where good and bad cells are destroyed mercilessly. I presume, the body that is a magnificent machine working at its own pace is suddenly jolted to become a killing field. It now takes Ranjan more than 3 days to somewhat recover. And the body is not given time to regroup its forces before the next assault. A series of injections compels it to go in frenzied mode to build good cells before they are again destroyed. And this goes on in cycles of 15 days. This is chemo for you.

I am writing this blog and there will be others to help you make an informed choice before you embark on chemo journey. I can only speak of the ABVD protocol, the one known to work best for Hodgkin's or what is known as the first line of treatment. Oncologists would tell you ABVD is a great progress on previous protocols which were far more toxic. The problem is that toxicity remains no matter wich way you look at it!

(I would like to say that all information in this blog is from serious medical journals and websites. This is not based on alternative therapy die hards or sensational websites)

What is ABVD? It is a combination of four drugs dripped into your system over a period of 4 to 5 hours. They are: Adriamycin, Bleomycin, Vinblastine and Dacarbazine.

Adriamycin was discovered in 1950 with clinical trials in the sixties and is a compound made from soil based microbes. By 1967 it was known that the compound could produce fatal heart toxicity. Adryamycin is also known as Doxorubicin. You would be amused or rather bemused to know that Adriamycin gets its name from the Adriatic sea and the rubi in its other name signifies ruby colour. The heart toxicity is higher in older people. This would be enough to make me think twice or a zillion times before accepting it to be dripped in a loved one. This article lists the side effects both for the layman and the health care professionals. If you or a loved one are likely to go for chemo, I urge you to read this as even the scientific mumbo jumbo is partly understandable. For ex when it is written: Doxorubicin-induced heart failure can present one month to one year or more after termination of therapy. So now one has to live with this constant fear and keep a look out for the signs and I guess do regular investigations however costly, painful or humiliating. The article lists the other side effects too, but this one is a big one. In plain words it would read like: you will be cured of your lymphoma but may die of a heart attack.

Bleomycin is the next guy on the list. From the heart we move to the lungs. Here again we were told about this about half way through the chemos when the Oncologist wanted a lung function test and I badgered him to learn more. Mercifully the lung function test was within norms but that was at chemo 6. Wonder what things would look like when 6 more chemos are done. Here again the lung side effect can come after the statement: you are clear of Hodgkin's. This article is written in simple terms and says it all. So post chemo and even the possibility of hearing the words: Hodgkin is gone, a heart and lung watch has to be in place.

So with 2 out 0f 4 we have to keep watch on two main organs: the heart and the lungs. Of course let us not forget all the short term effects on digestive tract, the skin, the hair, the nails etc.

Next is Vinblastine! Over and above the usual mouth sores, low platelets, low white cells, anaemia, pains etc that seems to be there for all chemo drugs. This one seems to be a little less toxic than the others. It can affect your hearing though and turn your nails blue!

Dacarbazine is Ranjan's bete noire! He somehow finds this drug the toughest and as luck would have it it takes the longest to inject: 90 minutes! It lowers your blood and platelet counts and makes you sensitive to sunlight and could damage your liver.

One of the major side effects of treatment of Hodgkin’s lymphoma is the development of a second cancer. That is the scary one. You celebrate the cure of one and start worrying about the possibility of another. In men it is lung and leukaemia! So I guess not too many cigars for Ranjan! His Doctor has allowed him one a week. Maybe he will ask him to stop once chemos are over. This is what I mean when I say you are given information in small palatable doses. I would like the whole enchilada!

One of the worst if not worst side effects of chemotherapy is its assault on the immune system. Let us not forget that it is this very system that will ultimately ensure total cure. Again serendipity at work as I was just handed a book about the Healing Codes and opened the page that said: The immune system is capable of healing just about anything if it is not suppressed by stress.  I am still to read the book and find out whether it is in sync with me but I too agree that ONLY OUR IMMUNE SYSTEM can heal any disease of the mind and the body we may have.

Conventional cancer therapies be they radio or chemo weaken and depress your immune system. That is a known fact. For the past 3 months now I have been a silent and helpless witness to this fact. The blood work that is done on Ranjan every week shows the WBCs falling at a frightening rate: from 19 000 (boosted by Grafeel injections) to 3000 two days after a ABVD session. This yoyo game is repeated with obsessive regularity. I wonder how it is perceived by our body and brain. It must be nothing short of shock and confusion.

I am a little weary of the alacrity with which doctors add chemo sessions. It is as if 8 or 12 do not make a difference. But when you read about the effects any chemo drug has on your immune system, you feel that doctors should be more concerned about adding even one cycle. A study revealed that oncologists would not take chemo themselves or recommend it to their loves ones. If this is the case, then it is nothing short of scary. Some may think that this statement is made to promote alternative cures. Again I leave it to your judgement. I read a book on chemotherapy where the author suggested that only cancer survivors should be oncologists or that every oncologist should administer him/herself with a chemo cycle before treating a patient. This is far fetched but not that silly. Your vision changes when you experience something first hand.

Chemo or no chemo what matters is the immune system. It is difficult to accept a therapy that destroys your immune system. An article that outlines ways of strengthening your immune system states: Intuition that tells you (more like SHOUTS at you) that you need to build up your immune system to combat the cancer and to restore your overall health. Once you understand that you need effective treatment to deal with a threat as serious as cancer, and you go ahead with your treatment, you still need to listen to your intuition. It does make sense that your immune system needs to be nurtured. It suggests exercise, nutrition, stress reduction etc.

I have a series of strategies to try and protect Ranjan's immune system to the best of my ability. My Tibetan doctor's words resound in my head 24/7. She has always maintained that she is only concerned about keeping the bone marrow intact and healthy. Keeping the immune system kicking!

Just read an interesting article about ageing. By the way I am not the one who is scared of ageing and have never: dyed my hair, applied anti ageing goop or fallen for the ad campaigns promising you an 18 year old forever. What caught my eye is the opening para:  A few weeks ago, a group of researchers including maverick American physician Dean Ornish and Nobel laureate Elizabeth Blackburn published a study that caught a lot of eyeballs. In the study, which appeared in Lancet Oncology, a prestigious medical journal, Ornish’s team compared two sets of prostate cancer patients. Both had undergone dramatically different treatments for five years—one received conventional therapy while the other made drastic lifestyle changes, exercising, meditating, attending support-group sessions and eating a diet of whole foods. At the end of the study period, Ornish found that while the blood immune cells of patients in the conventional therapy group had aged as all normal human cells do, the clock had seemingly turned back in the cells of the group that had made lifestyle changes. The article is about a new agent called telemorase but is all in trial stage. They do have a supplement called TA 65. By the way it is available in India but at a cost I cannot afford!! But Dr Ormish makes a point that we should keep in mind. He has developed the Hormish method which is a mix of several interventions, such as switching to plant-based foods, meditation and regular exercise. The most unique feature of the programme, though, is its acknowledgement that loneliness and social isolation can cause illness and premature death more than poor diet or smoking ever can. Therefore, the Ornish Spectrum requires a person following it to seek love and intimacy. It may sound like a hopelessly vague task, but the programme recommends several ways to achieve this, such as improving communication skills, meditating, group therapy, psychotherapy and even learning how to confess and forgive.

It brings all back to mind over matter and to the fact that stress is the worst culprit.I  know exactly how and when Ranjan's cancer cells began their frenzied dance. I kick myself for not having pushed him enough though God knows how much I tried. Could I have done more. I do not think so as he was blinded by emotions he believed in and had to witness their destruction with no coping strategy. The harm was done. Now one has to undo it all.

I am counting days till the 27 December which will be the 12th chemo. 2014 will be my year when I go all guns blazing to get his immune system back in place and ready to fight every assault. Something will be easy but getting ranjan to do yogic breathing and meditate is a tough one. Have been trying for long but not much success. Maybe acupuncture. I still do not know. Have been scouring the net for suggestions to boost immune system. Guavas and oranges, carrots and papaya, almonds and green tea! Much of this he is having already. I am also looking for supplements and have found astragalus and resveratrol. Will be adding these too. I hope it all works and gets his bone marrow to produce all the good cells needed to take care of the few left over cancer cells.

I titled this post a matter of choice. I know most people will be weary of trying out alternative therapies as the first line of defence should they or their loved ones be diagnosed with cancer. What I insist upon is knowing all the side effects and also being aware of all the support regimen that one can build. For me it has been a constant research to try and keep one step ahead. The reason I share all this is that maybe it could help someone and make their last battle that much easier.