I know I promised a more detailed blog yesterday but I was so caught up in being home and being happy being home that time ran short. As mentioned, the hospital isn’t the only place where plans can change.
Being in the hospital is fine. The nurses are great – I think I said many blogs ago that they are the true heroes of the industry – always attentive (to even the most high maintenance of patients), always with a smile and always with the knowledge that many of the people they see from day to day will not show up again – for worse reasons that being “cured.” What a difficult job! If I haven’t expressed my appreciation for them I should have and will continue to do so.
So with every one of my needs being attended to its not such a bad place to be … for a few days. That being said, when it is a week or more stay it becomes frustrating, restricting and annoying. There isn’t much place to go except for from your bed to a chair or a bed to the bathroom which is smaller than my first New York apartment! My usually cheery demeanor starts to sour after 5 or more days into something born in frustration and lack of freedom. My smiles become less genuine and my body aches from lack of movement – so before we turn this into a personal pity party – let us just say being home is the greatest medicine there is and I am JUST HAPPY to be here. AND … I feel better, my smile is more genuine and the pain is going away more and more with each passing day.
As best I can remember through the haze of chemo, radiation and recovery here are the details of the past week:
I was admitted one day earlier than expected. I was supposed to have my T-Cells harvested on Wednesday 1/7 and then be admitted for the PACE regimen (minus the P and A – they don’t mix well with radiation) for four straight days beginning Thursday. Two of those days (Monday and Tuesday) were to be the first of four shots of radiation on my leg to eradicate (or help eradicate) the myeloma activity. The surgery inserted a 36 cm titanium rod to stabilize my femur from breakage. It did not, nor was it ever, supposed to get rid of the Cancer. By radiating the area we can target active myeloma – which we know exists there because of the EXTENSIVE bone damage.
We made it through T-Cell Collection and collected more than enough T-Cells for the trial (I WILL EXPLAIN THE TRIAL IN AN UPCOMING BLOG FOR THOSE WHO WANT TO KNOW HOW IT WORKS) on 2/2. We even have enough left over for T-Cell boosts along the way to recovery if needed. The collection nurse was OUTSTANDING! Again – I can’t appreciate enough the heroes in my world.
After Tuesday, the PACE chemo infusion was over and I was to be discharged. I made a GAME TIME DECISION – called an audible if you will – and “OMAHA, OMAHA!” I decided to stay in the hospital and resume treatment as an inpatient for the rest of the stay. Originally, I was going to check into a hotel down the street but I had upcoming appointments with other doctors – the leg surgeon for a follow up, labs to take every day, a neulasta shot to build my WBC count – that the thought of trying to be on time for all of these from outside the hospital, in a hotel, jumping in a cab every day was too much to bear. This proved to be true on Thursday when they discharged me in the morning and left to my own devices to get around the hospital from appointment to appointment. Again, if not for the kindness of a random nurse who wheeled me down to the surgeon for my check up and the kindness of the doctor who removed my staples from surgery who wheeled me over to the outpatient lab for the Neulasta – I don’t know how I would have made it from place to place. Helene and my parents were packing the room and checking out of their hotel and I had to rely on the kindness of the hospital to get myself around. I am fortunate – AGAIN – to have such people caring for me.
Yikes! This is getting long. OK – surgery follow up was great. Incision are healing better than planned. Blood counts so far are holding up – I will get them checked at Overlook Hospital locally until the 2/2 transplant. Now to be HOME!
HOME. I came home Thursday night and needed so much catch up sleep I didn’t get a chance to spend much time with anyone. But, again, sometimes it’s not that. Its just the BEING HOME part that makes it better for everyone. For example my son Victor came down with a small bug and we were basically not allowed to touch, hug or see each other for a couple of days – my immune system being what it is. That was tough. I haven’t seen him for over a week and then CAN’T EVEN HUG HIM when I get home? AAAAAARGH!
Friday – yesterday – I got to spend time with them after school. I used the day to catch up on work, bills, reading, popped a movie in the DVD player. One of my friends has DVD copies of all the Golden Globe movies so I can spend the weekend with them. Maybe I will put up a movie review section. Yesterday we viewed “Selma”
So yesterday was for being HAPPY and soaking it all in. Today was the detailed update. On the emotional side of things I am fine as well.
Helene and Victor are in Massachusetts for a basketball tournament for the weekend. Ava is with Helene’s parents in Atlantic City for a cheerleading competition and I am home – without them. OH, THE IRONY! I do, however, LOVE the fact that my kid’s schedules go on – despite my illness. This is who I am. They are who they are – with lives to lead and successes to achieve. Cancer is just a small part of this. Life goes on – LITERALLY – for all of us – including ME. Remember – “YOU DON’T BEAT CANCER BY NOT DYING. YOU BEAT CANCER BY HOW YOU LIVE”
We LIVE. We ACHIEVE. EVERY. SINGLE. DAY. That is my family.
My mom and step father are here with me for the weekend so I am grateful to spend the time with them and the kids will be home soon enough. It hurts to give up not attending this stuff with them but to give up a few weekends here and there to fight for the chance to watch them become Bar/Bat Mitzvah, graduate, get married, have grandchildren is worth a weekend or two now. This isn’t an instant gratification fight. It is our marathon and we are ready to run.
So … recap …. BACK AT HOME. Back to my routine. My morning routine? Right here. And I’ve already taken three of them!