Friday, August 29, 2008

Chemo training

Well that was a bit of a shock!!

Nicky and I were expecting a cordial tour of the facility, but instead it was a full on, this is what chemo is and these are the other drugs you will need after each session in order to remain part of the human race. OMG, or as a good friend would say, zomg.

I have started a course of Alugodknowswhatanol in order to protect my kidneys from the impending assault;

Once through the actual treatment, which last 2 1/2 hours, I start a 5 day regimen of anti nausea and anti anxiety medicines which should lead to a slight rattling sound when I move (having driven English cars my whole life, I should be used to that).

To top it off, Nurse Nicky will be trained in the art of sticking Justin in a variety of painful ways as I have to have a daily shot of something called Neupogen, to help my white cell count.

It doesn't sound like much of an existence, but neither is the alternative.

We are in the process of trying to cancel our flights to England, but it seems as though we may have lost that money, which is a little frustrating; you would think that, regardless of what restrictions they place on tickets, there would be some form of dispensation for medical problems. Anyway, we'll see how that plays out.

I am going to sign off and I probably will not be back until after my first treatment; ta ta til then.

Wednesday, August 27, 2008

Drum roll please ....

We have just returned from the oncologist, I officially have Type IIB Hodgkins lymphoma; the prognosis is good.

I start ABVD chemotherapy on Tuesday next week, receiving a dose every 14 days for 6 - 8 months depending on progress. I am guaranteed to lose my hair, so for those of you that I do see, I will be sporting the latest in bald-as-a-coot styles; there is no way I am going to let Deep persuade me into on of his jaunty coverings.

Unfortunately I will be immunosuppressed for pretty much the whole time, which is going to affect my interaction with the kids (germ factories) and their ability to invite friends (other germ factories) to the house.

Unfortunately we have also been told that we need to cancel our planned Christmas vacation to England which is very disappointing, actually very demoralizing; but needs must when the devil drives.

I am going to sign off and let this sink in a little bit, I have chemo school tomorrow, when I will learn the ins and outs of the procedure, I'll bore you with that, and any of the thoughts that I have had concerning today's news, then.

Monday, August 25, 2008

That feels strange

Just got back from my bone marrow biopsy. My NP, Stacy, numbed me up good, but there is no disguising the sensation of something being sucked out of you bones, very odd indeed.

Still waiting for complete diagnosis, Wednesday at the latest.

Friday, August 22, 2008

Ready for treatment

I had my echo cardiogram today, since the chemo I will be treated with is heart toxic, they need to make sure I have a healthy heart before I begin and I am pleased to report that I was give a clean bill of health in that regard. I have my bone marrow biopsy on Monday and then there is nothing standing in the way of treatment starting next week.

Frankly I can't wait, I know its only be two weeks since initial diagnosis but you know what they say about a watched pot.

I keep receiving messages of support and encouragement from work which always cheers me up, one specific message was particularly touching and made me feel much better. I will not reveal the source in order to protect his/her otherwise impeccable reputation as a grouch. :-)

It's the weekend, and I am looking forward to it, two days when I don't have to be stuck with a needle and when I don't have to sit by the phone waiting for the next diagnostic. Small victories.

Here's to Monday and a complete prognosis.

Thursday, August 21, 2008

Running on empty today

I am feeling less than robust today, I am very sore from the surgery yesterday and just about every lymph node in my body is showing its displeasure.

I haven't been able to sleep and my chest feels like I have spent 10 hours in the gym benching my own body weight, having never done so before.

I am scheduled to have my echo cardiogram tomorrow and bone marrow biopsy on Monday; I think I might save some vicodin for that special moment.

My oncologist, Dr. Kankapati, told me that we will not have an accurate diagnosis until Monday, but all signs point to Hodgkin's lymphoma or, more usually, Hodgkin's disease. My grovelling around using Google suggests that if we have caught it early enough, the prognosis will be excellent, otherwise, well, less excellent :-).

Slowly but surely the information streams are converging and by Monday I will know what's what and I will share it with you as soon as I am able.

I was feeling particularly sorry for myself today but I received a really nice email from my boss, Greg, and that seems to have lifted my spirits. I really need to have a word with myself about the self pity thing, it really is out of character, not only am I am disappointed in myself but it is the last thing Nicky needs.

Off to rest now.

Wednesday, August 20, 2008

Under the knife

I went into hospital at 5:30 this morning, surgery at 7:30, to have the tumor biopsy. Initial pathology suggests the lymphoma diagnosis is correct, but there are some other tests that need to be performed on the biopsied tissue to identify the specific type; we should get a more conclusive report tomorrow and absolute diagnosis on Friday.

I have to admit that I feel like I have been run over by a bus. Thankfully, the pain meds Dr. Straznicka prescribed are working well.

The VAP (venous access port) was installed at the same time; it feels very strange, but I am sure I'll get used to the lump. I am very grateful to have the VAP, rather than the external catheter that my mother had; at least with the VAP I can shower and swim without having to waterproof the area.

Yesterday I had my PET scan; again I do not have conclusive results, but preliminary observations suggests an active tumor with perhaps two other points of infection. A complete report should be forthcoming tomorrow.

Nicky continues to be a rock; I could not ask for a more loving or sympathetic partner. I think I need to speak with her friends and make sure that some regular nights out with the girls are planned. I don't know if she realizes how much I appreciate how strong she is being, and whilst I can't alleviate my symptoms, I can make sure that she has the occasional brush with normality.

Time to sign off. I will update with the results of the biopsy and PET as soon as I have them.

Sunday, August 17, 2008

Target identified

I met with my thoracic surgeon on Friday, 15 August 2008, Dr. Straznicka.

She was kind enough to show me my CT scan, so I have seen the beast. The mass is approximately 10 * 10 cm and has developed in between my lungs, growing around the major blood vessels that occupy that space, notably the Aorta and Superior vena cava, the mass is squeezing these blood vessels and restricting blood flow which is causing my breathlessness and seemingly permanent headache.

With any luck the biopsy will take place on Wednesday this week and by Friday I will know the gory details. When the biopsy is taken they will also be inserting my VAP, through which my chemo therapy will be injected, so at least I will not have to schedule another appointment.

I have to admit that I am looking forward to being fully in the know; Simply starting the war of attrition with this thing will be a major step forward.

Wednesday, August 13, 2008

Frustrating delays

As anyone who knows me can attest, I am not the worlds most patient person, so it is very frustrating to have my tests delayed by the need to have a nameless, faceless, department at my health care insurer approve the procedures.

It is not that the delay is going to change my prognosis or treatment, but it does amplify the anxiety of not knowing.

To my mind, the presence of the mass in my chest should preclude the need for any further authorizations; denying tests at this point would be a fiscal decision and have nothing to do with my well being.

Patience, that's what I need, has anyone got a surplus that I might borrow?

Telling the kids

We spoke to a friend of ours who has strong kung fu in the head game hoobajooba and she advised us to tell the kids as soon as possible.

So, after my blood tests this morning, I sat them both down and gave them a precis of what is happening. Caitlin, bless her sensitive soul, held it together for a couple of seconds then fell into her mums lap, Abbie, true to form, asked if she could go back to the game she had been playing, that's my girl.

Anyway, job done, I'm sure its not the last conversation we'll have but I feel better knowing that they wont hear this from anyone else.

More later.

Tuesday, August 12, 2008

Made a note in my diary, simply says "BUGGER"

You know, this blog has never been about reaching people, more a place for me to rant.

Having said that, its readership was never higher than when I used it as a conduit to communicate with friends of family concerning my brother's accident and his fight back against pretty damning odds.

So in the interest of raising my number of readers, I am going to do the same with my own little tussle; so here goes:

On Friday, 8 August 2008, I had a CT scan which indicated a lymphatic mass in my chest. It's very hard to determine what exactly it is without a battery of other tests, but it does qualify as something 'not good'.

Today, 12 August 2008, I met with my oncologist for the first time, which was a frustrating experience only because I know no more today than I did last week -- other than the fact that I have to perform the following in the next week:

1. Lymphoma specific PET CT scan.
2. More blood tests that I care to mention.
3. A biopsy of the tumor by a thoracic surgeon.
4. Insertion of a chemo catheter.
5. Bone marrow biopsy.
6. Echo cardiogram -- The chemo can damage you heart so they need a baseline.

I told Nicky that she could come in to see the oncologist as long as she didn't blub, which proved to be useful in getting out of there as quickly as possible. Nicky told me afterward that when the doctor asked her if she had any questions, she was so close to crying that she simply shook her head, good girl.

How do I feel about all this?

I am little fearful about telling the kids; they are camping this weekend, so Nicky and I will tell them next week.

I am worried about how this and the following treatment will affect work.

I am, of course, worried about the worst possible outcome and having to leave Nicky and the kids behind.

Other than that, I have always had a matter-of-fact approach to my own mortality; I have always believed that when your number is up, it's up. Only time will tell.

All of our friends, including my colleagues at work have been absolutely smashing, although being English I am never quite sure how to deal with sympathy; my dad has always told me, sympathy can be found between shit and syphilis in the dictionary :-).

Anyway, I will sign off now. I will update as soon as I have more news.


Sorry about the number of re-posts but Nicky insists on copy editing everything I write nowadays.