She reprimanded me and told me to "knock off that attitude" when I explained the impending doom enveloping me. I told her that I was only joking ... but that's only about 30% true. This is because tomorrow I go back in for the final round of high-dose chemo. The big guns: BEAM. It's not too far from the doom I imagine engulfs you when you know you're taking the long walk to the electric chair where your brain is about to be fried. Well, maybe that's a bit extreme. But, ugh, nonetheless. To be truthful I've got quite a bit of anxiety about it. And all of this is coming exactly one year after the Hodgkin's bomb was first dropped on me. May 8 - the day I got the call telling me that I had cancer. Looking back on it all is mind numbing.
This past week I've been on the mend from DI-CEP and gearing up for BEAM. Every day I've gone for a hike in the woods with Sammy. We're so lucky to have a trail entrance just 100 yards from our front door. The trek up the hill gets easier with each day, but I have by no means regained my stamina. My heart still races and my chest still tightens. I've been packing in the fruits and veggies and raw foods. I've been out and about running errands, doing administrative work, getting things squared away around the house, seeing friends. I suppose this is what you could call "nesting," like women do before they go in to have a baby. But in my case, it's me that's going to be turning into a helpless baby – one that even vomits and poops myself.
Although I am much transformed since just three weeks ago when DI-CEP wrapped up, I am still very tired all the time. My muscles are so tight and joints very achey. Yoga stretches help for about five minutes then everything shrivels tight again. I went in for a check-up and check-in with my Yale oncologist last Thursday and he thinks I've done "beautifully" with the recovery. I ache for those who don't bounce back like that because if this is "beautiful" then I'd hate to see what "ugly" would be.
All of my blood cell counts are perfectly normal as well as my electrolytes, proteins and other indicators that they look at. I told him how the numbness in my left lower leg has increased and how it aches when I get run down and how my stamina still isn't up to par. All expected, I'm told. Apparently the cisplatin that I received with DI-CEP is one hell of a drug that can increase neuropathy and will leave me pretty run down for a long time. He told me that it will come back eventually and unless I wanted to run a marathon or something then it won't be a problem long-term. I told him that I did want to and that I will. He agreed that it'll be doable, I just need to be patient. I do real well with that ... .
So, I got the green light and here we are ready for the final battle. Kathryn, my autologous stem cell transplant coordinator, gave me a wonderfully detailed calendar of all the treatments and appointments I'll have over the next month, as well as a detailed chart of all the antibiotics I'll need to be taking every day to prevent infection ... some for the next six months. She's booked the hotel room for us and called in all my prescriptions for anti-nausea meds, anti-anxiety meds, rinses to treat mouth sores, steroids, and all the other accoutrements I'll need to recover from this. Now, as I've written about before, it's just time for me to get my rear in gear. Kathryn tells me that I'm truly starting out ahead of the game with my strength and activity level. Everything else is in place. I just have to show up and take the punches – again. Easier said then done.
Here's a synopsis of the schedule:
Tomorrow, May 12 (Day -6): the hardest drug in the regimen will be administered in the clinic down at Yale's Smilow Cancer Center. As long as all goes well, I'll head home after. I'm told that I will have a burning in my brain and a wicked headache like a bad hangover for about an hour at the end of the infusion.
Thursday-Friday, May 13-14 (Day -5 and -4): chemo in the morning at the Yale cancer clinic for approx. four hours. Drive back home and will receive chemo again at about 6pm for another four hours administered by a nurse in my home ... very anxious about how this will go ... .
Saturday-Sunday, May 15-16 (Day -3 and -2): chemo twice a day at home with the visiting nurse.
Monday, May 17 (Day -1): second hardest drug in the regimen administered in the clinic down at Smilow.
Tuesday, May 18: This is my Day 0. The day that I will be "reborn." I'll receive the rest of my 6.5 million stem cells which will help my body recover from the debilitating chemo by replacing all the blood cells that it will have killed off.
Wednesday, May 19 (Day +1): Rest day at home. From this point on, I will need someone with me 24/7 in order to be treated as an outpatient. My husband, parents and sister have worked out a coverage schedule.
Thursday, May 20 (Day +2) through Wednesday, June 2 (Day +15): I will be living in a hotel suite located just five minutes from Yale's Smilow Cancer Center. Every single day I will have to go into the clinic for bloodwork, a physical exam, IV fluids, possible blood transfusions and/or electrolyte repletions, and a Neupogen shot to help my WBCs recover. I will not be allowed in any crowds or public places, can't be by construction sites or polluted areas, no restaurants, no restaurant food even if taken into the hotel ... all to keep me safe from picking up an infection as I will have absolutely no immune system. I am however allowed to take walks in fresh air open areas and this makes me happy.
Expected Side Effects:
- While I'm getting the chemo this week through Monday it's expected that I'll feel pretty good and am told that the more active I can be, the better. So, I will eat as much as I can and walk/yoga/exercise band as much as I can.
- Dr. Cooper tells me that Day +4 and Day +5 will be when the worst of the chemo effects start to settle in and it's going to be rough going until Day +12 when by blood cell counts will begin to recover.
- Every single nurse, fellow, resident and oncologist has told me the same truth/joke that I'm going to think I am passing gas, but that it is not going to be just gas so be ready for it. I will be packing plenty of undies in my suitcase. I just hope I don't poop myself in the cancer center.
- GI issues up the wazoo, literally. Possible nausea and vomiting.
- Extreme fatigue and weakness
- Mouth and throat sores which will make me feel like I am swallowing over a bunch of rocks.
- No appetite due to the nausea and mouth sores. I'm told that many patients don't eat for days at a time, but that as long as I am able to keep down liquids, they don't get concerned. If anything, I'll be able to eat soft things like eggs or potatoes, smoothies, milkshakes, etc. I'll be seeing a nutritionist at some point this week who will help to recommend things that should have on hand in the hotel.
It's all pretty intimidating. But I think that the most intimidating part is that my life is riding on this. I am hoping with all of my being and might that the chemo regimen works and that my stem cells are strong enough to salvage me once again. After this horrendous ride is over, I'm very much looking forward to having a brand new, cancer-free molecular makeup.
Like VP Biden said so eloquently about healthcare reform, this is a "Big F*&%ing Deal."
HERE WE GO.