I'm getting closer to a plan, now, and I'm feeling good about it. This week I'll meet with my primary transplant oncologist, Dr. Waller, as well as the radiation oncologist at Emory who will be overseeing my pre-transplant radiation treatment. Dr. Waller will go over the risks of this procedure, get my consent, and go over the overall plan for my treatment. The radiation oncologist will review her recommended treatment and answer my radiation-related questions, and then we'll talk about coordinating her referral to a local radiation onc for treatment delivery near my home. In order to participate in the AMD3100 study, I have to wait one full month after the day of my last chemo treatment (August 8th) before they can collect my cells, so that puts us into early September. I'll start giving myself Neupogen shots twice a day on Friday, 9/8, in preparation for collection on the 12th. Neupogen puts the bone marrow into overdrive, hopefully producing all the stem cells I need for the transplant. The goal is 5,000,000.
Lorraine, Louie (arf!) and I will check into the hotel Sunday evening so we don't have to fight traffic early Monday morning to get to Emory at 7:30 Monday morning for the implantation of my temporary neck catheter, which will remain in place for the duration of stem cell collection.
Monday morning I'll have the catheter put in, take pain med's Monday afternoon (apparently the location of the catheter on the side of the neck can be painful,) and then a visiting nurse will come to the hotel at 10:00 p.m. to give me the AMD3100 shot. AMD3100 apparently assists a great deal with collection, because it sort of "fills up all the seats" in the marrow, forcing all those Neupogen-generated stem cells into the blood stream so they're more accessible for collection.
Tuesday morning I'll report to the hemapheresis ward at 7:30 with the goal to collect as many stem cells as possible! I'll finish around 1:30-2:30, head back to the hotel, and we'll hear that evening how we did. (My cells will have been turned over to the lab for counting before freezing, so we'll have a count at the end of the day.) Some people can get all 5 million collected in one day; others can take up to four days. Then there are those who's marrow has been so affected by the chemo they've had (as well as other contributing factors) that they simply can't produce the full 5 million. The hotel is booked through Friday, just in case. If I can't produce the 5 mill, we'll still move forward, as I explained in the last post.
Each day I'll arrive and leave around the same time, and each evening we'll get a status report...until we get the word that we've done it!! Then I'll go back in the next morning and they'll remove the neck catheter and we'll get to go home.
The following week I'll start radiation. I don't know yet how many weeks I'll get it, but it will be 5 days/week. Compared to chemo, radiation is apparently a breeze. Side effects will depend on exactly which area they radiate, but at the least I should expect fatigue and skin soreness and dryness. I'll get a prescription for a special cream to deal with the skin issues. If they radiate my mouth and/or throat, I'll have some other issues to deal with, but I'm not sure yet if that will occur. I'm hoping they can just radiate that clavicle only, without touching my mouth, esophagus, or thyroid. That would be wonderful!!
Radiation will be anywhere from 2-4 weeks, and then I'll go in for high dose chemo and the transplant immediately afterwards. I expect to be hospitalized for the month of October, pretty much. If I can get my counts up and get released sooner, GREAT!, but I'm going into it expecting a full month -- 6 days of high dose chemo, followed by 3 weeks for the transplant and its aftermath.
So that's the plan!
In other news, Lorraine and I are planning a 2-week trip to Italy next spring to celebrate!! My Christmas present of 2004 was a trip to Italy to commemorate my having beaten cancer -- I was diagnosed 12/17/04, so under the tree I found a beautiful book of photographs of Italy, and the second half of that present was to go to Italy after we'd put cancer behind us. Well, after I finished treatment for Round I last June, we'd made up our minds that we were going to move from our Baltimore townhome, so we put the Italy trip on the shelf. Well Lorraine has made up her mind that we need to go next spring -- and I am so excited!! Some of you may know that I used to live in Italy, so I intend to brush up on my Italian -- the plan (as of tonight, anyway!) is to go to the Amalfi coast, Venice, and Florence (where I lived.) We're going to rent a car and just tool around the countryside, enjoying ourselves. Now how exciting is THAT?? Aside from the gift of life....that's a hell of a carrot!
7 comments:
Hey Sarah,
I just read your last two posts....a huge "Congratulations" on having a negative PET Scan!! I know that is a very good sign....& now that you are getting radiation, that should kill any micro cells that the PET can't see....
I know how you feel about having a Plan in place....it feels good to be moving forward!....even with information overload.
It sounds like you have great doctors & nurses looking out for you & that must be so comforting...as you can relax & know that you are in good hands!
I love that you are planning a trip to Italy next spring, as it is so important to have goals & positive things to look forward to....Sue & I have talked about cruising the Greek Isles next year, however, I also want to squeeze in another trip to the Yukon to hike the Chilkoot Trail & canoe the remaining section of the Yukon River next summer....anyway, it is so important to plan for the future!
We will continue to monitor your progress & your transplant experience!!
Now...."Go Stems Cells Go"!
Angie
Hey Sarah
Long time no talk, congratulations on the clean PET Scan. Since you and Angie have so many similarities to your lives and stories, I can only hope she gets the same good news very soon. You are very detailed (like my sister) which really allows a person to understand that much more what you are experiencing. You are so ahead of the game, going into this transplant in remission. I feel a complete cure in your very near future. Praying you come through the transplant with little to no complications. Deep in my thoughts, Coleen (Angie's sister)
Sia pozzo e prosperi, buon amico!
No, I didn't just rattle that off the top of my head. ;) But in all seriousness, be well and prosper, both of you.
Maybe more like this: Salute e prosperità, buon amico!
sarah - i've been meaning to come back to your blog for months and months and i finally did so today. The last time i checked you were mid-way through ABVD. So needless to say i was quite saddened by your recent news.
I dont know if you remember me, but i somehow stumbled across your blog when you were first diagnosed. My wife, Jaime, had recently had a rough bout with Hodgkins (where the cancer had grown during ABVD). She went straight to ICE, Gemzar and then to a half-transplant and tehn a full transplant. 12 months of chemo straight and then 4 wks of radiation.
Rough first year of marriage! That said, i am writing this to let you know that we are 2.5 years out since then and things have (knock on wood) returned to normal. We are even on our way to having our first child (through a surrogate and donor egg).
So, as i wrote a few years ago, i ask you to look at us and know that this experience of cancer does eventually end, and good times begin again. Know that.
On behalf of myself and my family, i wish you and Lorriane the best of luck in this continued journey. You are going down the right path with the SCTs...they are miraculous.
Best
jerry
Sarah, Part of me is overwhelemd by the Plan, and how much you will be going through in the next couple of months. But most of me is overwhelmed by the grace with which you handle everything that's been thrown at you over the last couple of years. Italy is cool.
Good luck to you on your SCT. Two months ago, I had a SCT to fight a recurrence of Hodgkins IV-B and all went well, thus far. I just have an infection that I am dealing with now (pneumonia) but I am expected to recover. The best thing to remember is to stay positive as hard as that is and not to lose faith. You can do it.
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