Monday, September 15, 2014

My 300 Million army cells

                               
After a good night sleep and well hydrated, I am officially neutropenic. I then received some antibiotics and ant acid meds, as a prophylactic to the effects that my fighter cells may have. At 11 am my 300 million cells were presented to me by my research nurse and unit nurse. I donned my Dorothy red slippers T-shirt and Christine my nurse arrived on shift with her cancer crusher T-shirt!!! We gave the cells a blessing and the infusion started, all of 30 mins and it was done, squishing every last drip from the tubing. After lunch  the nurse told me that I will be monitored regulary to give me an indication of when I could receive the Aldesleukin. My blood pressure usually runs low, but it was lower than normal and I was feeling well. They were reluctant to commence with the Aldesleukin, as this product does drop the blood pressure amongst other things like flu like symptoms, fluid on the lung and puffy ankles as the albumin levels will be low. So after a few more BP checks over a couple of hours the doctors decided to go ahead and give it anyway. After the next check my blood pressure had come up, no kidding!!!
Only allowed to walk around the ward today as the masked lady and stayed awake to watch a whole movie. Feeling a bit more human today and enjoying food today. We will wait to see how tomorrow goes.

Chemotherapy Complete

                               
 On day -2 we saw the doctors and was told that I could go out side for a while, as now my lymphocytes were starting to drop, so not to venture too far,. So after a massage, James and I went out into the hospital grounds and found ourselves heading towards the Safra family Lodge. I sat in the shade while James made lunch, we shared lunch then I thought it would be an idea to take a nap there for an hour. On our return at 4.30 we were met by the nurses to say that I was on 4 hrly vitals, and with some tongue and cheek and winking and towing the line, they still think I am a good patient.
That night I stayed in the hospital so I could receive my final dose of chemotherapy at 5 am, met with the Doctors who say everything is going according to plan, lymphocytes will continue to drop over the course of the day and to stay close by. I was lucky to get some acupuncture and then James and I went down to the recreation room to make some photo frames. It was nice to get out from the ward. We also enjoyed a stroll in the court yard, continuing to feel nauseous.
So tomorrow is day 0 and I will be hydrated overnight in preparation for my lymphocytes with the ant-MAGE-3. This will only take 30 mins . After that I will be given high doses of Aldesleukin every 8 hours as tolerated, perhaps up to 4 days and these will help the Ant-MAGE-3 cells stay in my body for as long as possible, in the hopes that they can fight the bad guys. Once this has been done I will be under close observation for side effects, signs of infection and monitoring the return of my imunity.

Day - 7 Journey

Day -7 Journey begins


3rd time lucky! The marathon hydration by IV started at 6am on the 5th September, Heathers 8th Birthday!!!
The plan is to hydrate for 12 hours before the chemotherapy drug" Cytoxan" is administered once a day for 2 days, followed by 5 days of fludarabine, 7 days in total. Today is known as day -7. The day started with the alarm failing to go off, leaving elaine rushing around at 540am. she was supposed to be on the ward at 5...oops!....elaine arrived a little late and lucky for her, so did all her fluids from the pharmacy. The fluids arrived at 630am.
 A few tears were experience during the day, mainly due to seeing all the lovely photos on face book of Heathers special day and the reality that this is really happening. Missing home and the kids already.
530 in the evening and the Cytoxan was administered and within 15 minutes Elaine was feeling nauseous and started to wretch. The nurse was very good and said that this was totally normal and gave her some anti nausea meds, which promptly knocked elaine out for the evening. only trouble was that the nurses had to ensure that elaine voided her bladder every 2 hours. easier said then done!! trying to wake up while heavily sedated, unplug the drip stand maneuver around the bed and chairs to get to the bathroom and wretching all the way. oh yes and pee in a cup! Dignity soon takes a back seat when you are admitted into a hospital ward.
It was a hard night followed by another hard day (day -6), lack of sleep, fighting nausea , battling the anti nausea medications and fighting the god damn pole!!!. She dozed most of the day. We did however manage to take the pole for 3 walks around the hospital, each time fighting the nausea. Late evening she was slightly improving. Less than 17 hours to go on this chemo, then we start a new one which is slightly less toxic for 5 days.
                    

Elaine is a trooper, she is always awake and either already showered or just about to shower by the time I arrive in the morning
Day -5 Elaine was looking better today. I've saw an improvement. She still felt nauseous, but only when she moved. Those of you who know elaine , know that not moving is not an option!  She finished the cytoxan chemotherapy the night before and they started the fludarabine at 9 am but the IV hydration still remains and the loving dance with the pole still continues. (1.4 lts every 7 hours is our output!).
All in all, a good improvement. A walk in the hospital court yard in the morning, and wee sit down by a water fountain to enjoy the fresh air while wishing Helen and the boys a safe trip over the phone.


           

Later in the day we took another stroll in the court yard and even with our constant companion, "the pole". we managed to get some rays of sunshine along the way.
"Woo hoo". 6pm Elaine was liberated from the pole and no longer has to be woken up every 2 hours to pee.  This made for a very nice stroll around the hospital.
 Shhhhhh don't tell, but  Elaine sneaked out the side door and walk around the lodge gardens under a beautiful red sunset before returning to the room to watch a movie. She has improved a lot but the nausea still continues to be an issue. More medication and off to bed for a well earned rest and hopefully a full nights sleep.



Third times a charm.

                                                   
Once the twice daily injections were complete, I received the stem cell harvest on Thursday morning. I arrived at the unit early for the final injection and then was taken for apheresis at 7am. During that process they withdrew and replaced my blood volume 10 times, during which they were able to extract my stem cells. so off to the lab they went for counting and processing.
By the end of the day they were able to tell me that they had enough cells and would be working on them on the Tues next week, and that it was advised to wait otherwise if the chemo was started too early it could cause Leukaemia.
Therefore I had a choice whether to stay around from the Friday to the Thurs, or to go home.
The choice was easy, the family would be returning from Pheachland on Saturday.
So with the help of a very good friend, James and I flew overnight Friday night and returned Saturday at lunchtime, knowing that we had time to surprise the family on their return.
We made good use of our time, met friends for lunch, met friends for a run, met friends for a quick cuppa, attended the Highland games, visited Banff for a family walk in the Fenlands, before going out for an early dinner to celebrate our wedding anniversary and squeeze in a sneaky dose of iv vitamin c. We were also lucky enough to take the kids to their first day back at school.
So all in all a busy condensed time, before leaving the house at 5.30 am for the 10 am flight to Toronto and continuing on to Washington DC.
Arriving at admissions at 12 midnight, getting to bed at 1 am and then returning to the unit at 6 am for blood work and doctors round.
The rest of the day was spent catching up with sleep, getting groceries from Bethesda and catching up with episode 2 of "Outlander".

This morning I am back to the unit at 5.30 am to be connected to fluids for hydration in preparation for the first dose of Cytoxin and over the next 2 days looking at to 2 hrly bladder emptying, to prevent toxicity to my bladder.

So fingers and toes are crossed, prayers have been sent, determination is in place. So we will see how the third time goes.