Monday, June 4, 2007

Thrombophlebitis, wazzat???

June 4 (Day 12 of Cycle 3)

This is my zillionth attempt to log on to do a posting. TMNet, buck up! My stress level is being tested really severely. The last thing I need after a somewhat harrowing time at the medical center is to sit in front of the computer endlessly trying to refresh a conection which keeps bumping me off? Is this a sign? Next time I go to Starbuck.


My interim FBC today was somewhat disappointing. 1.8 vs the 2.8 (after Cycle 1) and 2.4 (after Cycle 2). It seems to be dipping and showing a downward trend. Any lower and I may have to go for a transfusion. So it was another booster shot today (Neupogen this time and not Granocyte) and I have to go in again tomorrow for a 2nd booster shot. So, I may want to check out the sin-seh shop and ask them if they have anything specific to boost wbc. My doctor has nothing specific to recommend other than maintain a good, normal diet and to include red meat in my diet ofr overall blood heatlh. Which is what I have been doing. I have transformed myself from a once month steak person to a weekly red meat eating carnivore-liver, beef bones with marrow, beef, chicken, lamb cooked in various styles. Just imagine how worse off I might have been if I had stuck to a vegetarian or white meat only diet.


My regular Onco is on leave, so I got to see his Locum, Dr A. I asked her about my right forearm, why the stiffness and the pain. She told me my chemo veins might be inflamed and I have what the medical proffesion calls "Thrombophlebitis". My veins in which the chemo drugs were administered were inflamed and are blocked for normal flow, and hence the hardening. When I asked, she said the condition is reversible but will take a long, long time. I like it when doctors tell me as it is and not sugarcoat the real situation. At least I know that my right arm will need some careful handling.


I asked what could have caused it, should there have been more flushing with saline to get the drug moving along and coursing away into my entire system and not "held up" along the veins in my arm. She told me a bag of saline is usually sufficient. And that this happens sometimes to chemo patients who do not use chemo ports. But no one had advised me to look out for this possible complication. I felt slightly let down. Now I am told that in the event that the last 2 veins cannot be used for future chemos ( I have 3 more to go ), and if they cannot locate a fresh, strong vein, then a chemo port need to be inserted in my chest. I hope I will be spared another Op, another G.A. Just 3 cycles to go and I needed a chemo port? Might as well set one up in the first place before the whole chemo regimen started. Dr A prescribed a mild Hydrocortisone cream to rub on my arm to help reduce the inflamation.


When I got home, I called up my Breast Surgeon and asked her if she has come across similar patients with Thromboflabitis. She said it can happen but reversible with time. To be honest, the thought had crossed my mind before. That if the chemo drugs can kill cells, what damage can it do to my healthy veins as it is being injected slowly but manually through my veins. I now have questions in my mind like what is the rate at which the drug should be injected. I can see that for the more powerful AC-T dosages used for my other chemo buddies, they are given the dosage via a drip. For me, an Onco nurse sits by my side and shoots the drugs v.v.slowly into my veins with the saline entering via a drip. When the drug has been administered, I would continue to sit and wait until the bag of saline is emptied. I need to reconfirm for the next chemo the entire process again. How many bags of saline will be required to flush the chemo channel and how much time is allocated to shoot the chemo drugs and if the rate is safe enough for me now that we know my veins can get easily inflamed. Can it be done even more slowly or should I use a drip?


I felt angry. But at who and at what? I have primed myself when committing to the chemo regimen that I should expect the unexpected. So why am I mad? I have read almost all the books that I can lay my hands on and I had not come across anyone talking about Thromboflabitis. When I got back, I googled the word, twice, and twice my notebook did an automatic shutdown when I tried to open a file on the topic. So all I know about it now is that it is an inflammation of the veins due to the administration of the chemo drugs, and it can happen again. The OED describes only Thrombosis - a serious condition caused by blood clot forming in a blood vessel.


Now I am worried where the clot that is forming the blockage will go to, how do we get trid of it? Someone says to massage my arm gently and often to encourage flow and perhaps to dispel the clot and blockage, but where will it go? To my heart? To my brain? That will be more serious. I am beginning to sound paranoid but shouldn't I worry knowing what I know. It is no good watching to see what happens next, like what I had been doing in the last 3 cycles....read about the side-effects, looking out when they will happen, feeling strangely "relieved" when they happened.


I now need to ask everytime, what are the side effects even for the most simple treatment. When I was given boosters, I had asked what are the side effects? Backpains and bodily aches, I was told, so some strong painkillers were given for 2 days (with granocytes). This time I was given Neupogen but Dr A did not prescribe painkillers. I was told the side effects are the same. My Onco nurse asked if I wanted the painkillers.


At this point in time, I have the FEC in my system, I am taking Nexium daily with Gaviston 4X a day, I am rubbing Hydrocortisone on my arm, I have Neupogen shot into my tummy for 2 days. Do I really need more drugs in my body? I said no and told her that if it is just a backache that will pass I can live with it. So, no painkillers and guess what, there were no backpains either?! Maybe there were but between my slightly numb left arm(surgery side) and my stiff and "sengal" right forearm, I had probably grown immune to new pains?


All day I reflected about where I am in the process right now. Almost completing the 3rd cycle, almost completing 50% of the regimen. The surgery no longer bothered me except for the scars from the plaster allergy. The chemo is bothering me, a lot. Really a lot, I tried as much as I can to remain positive, keep my faith alive that the treatment is a passing journey,that I need to savour and learn what the journey is teaching me. It will make arrival at the destination much more worthwhile. It has been a test of will and fortitude.


I can appreciate why some people just gave up halfway, or even when they have just one more cycle to go. I had actually met a few. It is so easy to feel discouraged, especially if you are not made to understand why certain things happen. Chemo is no fun. I sometimes find myself asking the inevitable question which I believe crosses the minds of all chemo patients - can this be enough, I have done 2 or 3, I don't suffer from pain caused by the cancer, but the chemo is killing me and my energy, shall I stop here? I asked this question each time a bout of nausea and fatigue hits me, and so far, I have willed my spirit to go on, if only to have faith that it will help me be around longer if I continue with the chemo. As far as quality of life goes, it is zilch during chemo moments of side-effects, but I had always looked forward to the 3rd week post chemo when my energy level bounces back and I bounce back with a vengeance. Just 1 week each time of "normal" energy level is a blessing


Today, on Day 12, I am a bald headed chemo patient with nails clowly turning blue. My tummy twists and turn with gastritis although I have medication for it to reduce the pain, my left arm is slightly numb, my right arm is stiff and "sengal", one boob is slightly flattened but supposed to fill up again in good time, I do not have constipation but my bowel movement is a battle in its own right because I am not eating as much vegetables when eating only porridge for meals, I think I am getting fresh blisters in my left cheek and my mood is erratic.
BUT I AM ALIVE. Syukur Alhamdullillah I am alive.


I had 3 friends visiting at various times today after I got back from the medical center. So I had less time to be bitchy with myself. One brought a book she said that is really good for me to read at this time - Man's Search for Meaning-by a physician Victor E Frankl, a survivor of the Nazi concentration camps in Krakaw and Dachau. He proved that regardless of what outward calamities one has to endure, at the end of the day, survival is about controlling the mind, the mind and one's faith will help a person to overcome anything. Nothing new really, as I know how powerful the mind is and I had heard this before, but it will be interesting to read about how this guy lived through the horrors of Nazi death camps, where death was a sure thing for most of the inmates.


Hopefully I will be further inspired. My dear brother is really worried about me and decided to stay on in KL for another day to see that I will be okay after my second booster. I am off now to get the second booster.

5 comments:

Unknown said...

Azmi dearest.. again...I feel you sister... That's what the chemo does to your body... making all systems haywire...and all emotions curl up into one... I can understand you well.. but don't lose the grip. Hang in there. I'll pray that Allah eases your test and tribulation...

Take care and love.

HCI said...

Azmi, apa hel nya counts dok turun aje. Biasa CEF da FAC tak la gitu, furthermore considering your effort at eating healthy.

Tak kena ambil neupogen this round ke?

Try ganoderma, green tea at least if you don't believe in other herbs.

Azmi said...

Dear Raden,
insya Allah, I keep telling myself that a number of others before me had completed and survived their more aggressive chemo regimen, so what have I to complain and feel sorry about. It will pass, just 3 more cycles and a few more surprises and tests of strength and willpower to endure....
Thanks for your doa...see you later today.

Azmi said...

Dear Proffs,
itu lah...it is very frustrating, but I guess Allah is trying to tell me something. Sometimes we may THINK we have tried hard, maybe it is not hard enough....I am drinking green tea and carrying t-bags with me macam orang kedekut when I go out for meals, I asked for hot water to infuse my green tea bag if the place takde green tea. Kacang botol and midin-loads, kencing bau sayur! Only ganoderma belum try, I don't like to order via internet, and will look for it in shops or sinseh. Kat mane ada jual on the shelf in KL, do you know? Genuine ones lah...I want to try this out after cycle 4 and see what the next interim, pre-booster wbc reading is.

Yes, this time they shot Neupogen in my tummy. First day, tak sakit badan. Second day, by evening, pinggang mula sakit, macam orang tua....I had refused the painkiller because the last time with granocyte I didn't get any aches...

Must try Ganoderma/Linzhi- I see the big advertising billboards along the KL-Sban highway tapi no indication of where we can get...

Anonymous said...

Took me time to read the whole article, the article is great but the comments bring more brainstorm ideas, thanks.

- Johnson