Raindrops and Sunbeams

A Whole New Path!

Posted on: October 8, 2010

This past week my hubby and I made the trip to the Massey Cancer Center in Richmond. According to my oncologist, who had arranged the appointment, ‘if you want a cure, this is your only shot”. She was referring to a Stem Cell Transplant. For my part, I was full of questions, and hoping that this trip would provide some answers.

We were directed to the opposite side of the hospital, thanks to an inattentive parking attendant, and ended up having to walk what seemed like forever to get back to the Bone Marrow Transplant clinic. (Stem cell transplant and bone marrow transplant are pretty much interchangeable terms – the only difference being where the stem cells come from – the blood or bone marrow).  We did give up trying to figure out how we could take an elevator to the 2nd floor on that side of the hospital, and end up at the other end on the 6th floor – that was pretty interesting!  Another short hop up to the 7th floor and we were at the clinic.

Looked like waiting rooms everywhere…semi-comfortable chairs, a TV on the wall…rack of magazines. The receptionist was very nice (in fact ALL the staff there were very nice) – got me checked in, and did all the preliminary stuff – even though we were a full hour early. We were unsure of the route, and thus how long it would really take – so we allotted extra time. Next time we’ll know better.

Had a longish chat with the Nurse-practitioner first – she went over the paperwork I had filled out before I came, and got more details about me, my health history and general thoughts on why I was there. I did tell her I had two pages of questions that I was hoping to get answered – she never even blinked – just said that she hoped that before I left, I’d have those answers.

Then came a looooong wait in the conference room, waiting for the doctor. After a half-hour, I was getting fidgety…wondering what on earth was taking so long. At last, he arrived – and was not the doctor I had been told I’d be seeing.  He explained that he and the other doctor had discussed my case, and they decided that he would be the better one to tell and explain the options I could consider. He then got out a pile of paper, and told me he was going to take notes as he talked, and they were for me to take home. I could have hugged him for that!

We spent over an hour with him – and he explained Lymphoma to me….and the progression of how they progressed from just a few definitions of sub-types to the myriad that there are now. I understood everything he said, from all the reading I have done on my own, and from the posting of others on several forums I am on. He told me that he was 90% certain that the type of Lymphoma I have is “Marginal Zone” – and he drew me a pictures. He then said they would be sending for all my original pathology slides from the original biopsies, because, as he put it “we check everyone’s work” – but he was pretty sure that his feeling will be confirmed when the second look was done. Whew! Two big questions answered! Now I have a ‘name’ for my lymphoma, and I will have my second opinion on it. The visit was already a success in my book, just for that!

He then went into the first option – the Stem Cell Transplant. I had read a lot about these, but it really helped for him to tell me, and to let me know how much time would have to be spent in Richmond with this (all together – talking about 8 weeks – part as outpatient, part in the hospital). This I pretty much knew. I was heartened to find that all the info he was giving us meshed perfectly with all the reading I had been doing.  I brought up the ‘insurance problem’. We are, yet again, losing our Medicare Advantage health insurance at the end of the year. Cigna is going out of the Medicare Advantage business. This year a double whammy, as we are also losing our Part D prescription coverage insurance. Wonderful. And there are not many choices out there any more.  I have found two. Last year when we went thru this, there was about 20. But I digress!  He said they have an entire staff devoted just to dealing with insurance companies to get these procedures covered as much as possible. I would have able help with that end.

He addressed the question I had about me being in remission (we think), and could we just not let sleeping dogs lie…so to speak? He said we ‘could’ – but……the presence of the cancer cells in the hernia was troubling…perhaps the lymphoma was getting ready to (as he put it) ‘rear its ugly head’. Add to that, if I do relapse ( and yes, it WILL come back….just a question of when), it probably will be sooner than later – and the chemo that was so effective the first time around would not be again. They would have to ramp it up to deal with the new recurrance. Then he said we would get into the treatment being so harsh that it would impact my quality of life more and more.  He also said that being in remission could be the very best time to try to knock the lymphoma out of the park for a long time. Another question answered.

For the transplant – I was looking at:  2 weeks or so outpatient to collect enough stem cells to do the transplant. They use your own cells. So the name ‘transplant’ is really a misnomer, and they are taking them from you, then giving them back later. After this….around 3 weeks as an inpatient in the hospital, while they give chemo to take down my immune system, and then let the new stem cells build up a new one.  Depending on timing…about 3 weeks – then there would be another 2 or so weeks waiting for the blood counts to reach a high enough level to allow me to go home.

Then – a total surprise – a second option – as he knew from all our earlier talking  this just might not be a ‘possible’ solution. He suggested an alternative – Zevalin. Ok…I had read the name, but knew nothing about what it was. He then went back to drawing and making notes – first about how Rituxan works – which I knew. I had already had this – I knew that it would target the ‘bad’ cells and flag them, then signal my own body to kill them off and get rid of them.  He told me that they had the idea to go a step further – to not count on the body to do this ‘killing off’ of the cells – for it does it not so well, or consistently as it could be. Adding a radioactive isotope to the mix would do it. The Rituxan would do it’s targeting….then the radioactive bits attached to it would kill off all those, and all the adjacent ‘bad’ cells that might be lurking.  He explained it so well – and it made so much sense!  With this treatment – I was looking at 4 days  – all outpatient – and I’d be done! One trip to do a bone marrow biopsy to make sure everything is in remission there. One day for a ‘test’ infusion of the treatment, this would be an overnighter, as I ‘d have to be scanned the next morning – the scan would show that the infusion was going where it was supposed to.  Then, assuming that was ok….a week later, go back, get the treatment, and I’m done.

Add to that…..that if….down the road, it became necessary to re-do it – it would be just as effective as the first time. And to top all of that….I could be done with all of it before Thanksgiving, so eliminating one insurance issue…..but, if it turns out the insurance refuses to cover it – the company that makes the drug will pick up the tab. And the prospect of a nice loooooooong remission – or as he put it….’durable’ remission. I like the sound of that.

So….we went there thinking about one thing….and ended up on a totally different road….but one that ‘fits’ where we are, and what we can do. And I won’t really ‘glow in the dark’ lol!

Now waiting to hear from Richmond to get this thing rolling…..and feeling so much better about how this cancer is going to be ‘beat down and destroyed’ for years to come. Sunbeams indeed! And how much I think and thank God for directing us on this path that turned into the one I think He had in mind.

Stay tuned……more to come on this journey!

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2 Responses to "A Whole New Path!"

waahoo! I am so excited for you and this option!! YEAH!!

Looks like you are finally getting the help and the answers you need that’s good

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