Not just yet…

I did make it home last Friday and the root canal is complete. However, my team at Dana Farber has made the decision to delay the start of my stem cell transplant by one week. They would like to see my WBC and ANC move up and they didn’t like the c. Diff.

So now the plan is to go to Boston on October 8th for the placement of the central line and be admitted on October 9th for the stem cell transplant.

Also, effective yesterday morning, my hair is no more. Back to buffs, hats, and a wig.

Just got my counts for today, ANC 0.2, platelets 10, and hemoglobin 7.2. So it will be a long afternoon into evening here at Smilow getting blood and platelets.

“She’s leaving today.” (Nurses as Allies)

I have been here at Smilow for two nights. I have not had a fever basically since I was admitted. I did however develop C. diff.

There have been no other evidence of infections. I have been getting IV antibiotics (and oral for the C. diff). I have not slept well. I have continued to have headaches and nausea which I can actually manage better at home with Tylenol, etc. AND I have a 2:00 dentist appointment I HAVE to get to today to complete the root canal required for the stem cell transplant.

The doctors kept me last night “out of an abundance of caution”. You only see the doctors once a day. So I have been very communicative with the nurses about my need to go home (and that I would likely go home even against medical advice). They have been very understanding and have given me great compassionate care during my stay.

This morning my hemoglobin is 7.0 so I need a transfusion before I leave. The nurse just popped her head in and said the blood is ordered, she just needs to go get it. She added that she she spoke to the doctor about discharge today and she started to hem and haw and the nurse told her, “She’s leaving today.”

And so I am!

Animal House

Woke up this morning feeling chilled. Took my temp, 99.1. Had an 8:30 infusion appointment at Smilow. (Only needed platelets, and my ANC finally made it to the scoreboard with a whopping 0.1.) Temp was 99.7 (100.4 is their breaking point for fever). But they decided to take blood cultures anyway (that’s what they do at the hospital when you show up with a neutropenic fever). They sent me home and told me to call if it was 100.4 or higher.

About an hour later I was at 102.1. I took it over and over for about 30 minutes and it didn’t budge. Called Smilow as directed and they told me to come to their Extended Care Clinic at 3:00.

When they were checking me in and running through all the questions, they asked if I had eaten today. I had. They wanted to know what… my answer, “a doughnut and a cold piece of pizza.” Bluto’s got nothing on me!

Also, getting admitted. Hopefully just one night.

Counts

I have come to Smilow every other day since I was released from the hospital. Saturday and today my blood counts have been “tanking”. Both days my ANC has been 0.0 and my platelets have been in the teens. Today my hemoglobin is 7.2, so I need platelets and a unit of blood.

Of course there is a slight complication. I have my pre-SCT PET scan at 12:50. Not enough time to get blood and platelets. We’ll see if I can come back up for the blood after the scan.

I’m feeling pretty good, not great. Lots of headaches, nausea is still lingering, and I’m tired. I also feel oddly, just a little bit shaky most of the time. Not literally shaking. Just not solidly up and able. It’s hard to explain. But I did go on a walk with Scot and Lola yesterday. I took it super slow and stopped and took a breather as needed.

I am going to try and take another walk today if I get out of here at a decent time. I am going to count all of the walking all over the hospital too!

Back Home for a Bit

I was discharged last night from Smilow around 5:30. The day until then was fairly uneventful. Other than getting migraines in the morning, some nausea, and very unceremoniously puking up my lunch.

Today I had some logistics to take care of, rescheduling some appointments, booking my tooth extraction with an oral surgeon, etc.

It’s a bit easier to manage meds for pain and nausea at home because you can forego the call button and the wait for the nurse.

Another stint in the hospital has not helped my conditioning/muscle mass. I need to start talking walks no matter how short.

And one last thing, the hair loss countdown begins. We’ll see how it goes this time.

Update from NP 11 at Smilow

Things have been moving along. Basically without much drama or changes. A little migraine here, some nausea there, few episodes of lightheadedness. But feeling pretty good now and CERTAINLY ready to be discharged. The plan is to go home tomorrow (Tuesday) night when the 4th and final bag is transfused.

Scot’s brought me some of my favorites for dinner (Bar mashed potato and bacon pizza and then Archie Moore wings while we watched the Giants lose).

Erica visited and brought me some beautiful chocolate truffles (prescribed by Laura).

So to go home and prep for the stem cell transplant (SCT) and recover from this treatment. I haven’t even had time to read through the gigantic packet of info for the SCT.

And of course snuggle with my Lola!

More Moves, More Changes

Friday afternoon, a little before 5:00, Dr. Seropian decided to pause the chemo. Wait 12 hours and monitor the low heart rate. And then restart at a lower amount of the chemo they felt was causing the issue. I was not very happy about this. I really feel like I need all the “bang for the buck” I can get with these treatments.

More checking of vitals, more EKGs through the night. Around 2:00 am the hospitalist spoke to the oncologist on call and they decided to move me to a cardiology floor where they could monitor my heart rate with telemetry (remote real-time monitoring). So I was moved to the East Pavilion at 3:00 am. Nothing much changed overnight or this morning.

Today (Saturday) I was rounded on by medical staff who were lovely but were not decision makers and didn’t have any news. We were well beyond the proposed 12 hour delay in chemo administration. At 1:00 pm I called Seropian’s office and left a message for the clinician on call. 30 minutes later and many phone calls on her part she told me that the plan was to move back to Smilow 11th floor and restart the chemo with a reduction in the one drug.

So I moved back, this is room number 4 since Wednesday, for those keeping score.

And forward I go, again.

About Last Night

At 10:30 last night they told me they had a bed for me one floor down. I did not know I needed a bed on a different floor. Apparently I was on the medical oncology floor and was being moved to the hematology oncology floor. They moved me at midnight.

When the nurse in my new room did my vitals my heart rate was in the low 40’s. And no, it was not like that on the old floor, nor had I ever had a low heart rate.

What followed was a night of EKG’s the hospitalist, and calls with the pharmacy. A morning of doctor visits from the oncology cardiology, the cardiology team, and the oncology rounding team. Everyone was in agreement that since I was asymptomatic (no lightheadedness, dizziness, etc.) the treatment can continue – which is good news.

With very little sleep the days are definitely melding into one. I got here late Wednesday night, started treatment around 5:00 Thursday. And today is Friday (this is for me, not you 😎).

I finally slept for almost two hours this afternoon only to be awakened by a very cheery woman to go over my med list.

It’s all good.

None of You Have Ever Seen Me So “Zen”

Tuesday, the 7th was pre-stem cell dental visit (I have to have a tooth extracted next week) and a visit to Dana Farber for a couple of tests.

Yesterday, Wednesday the 8th, I had my PICC line inserted in my arm and then I went home to wait for my hospital admittance call. And wait I did. They finally called after 9 p.m. I was admitted at 9:30 (same gigantic corner room).

This morning, I waited for the visit by the rounding doctors. Everything was “a go”. I had an echocardiogram. I received some IV fluids because my calcium was elevated. And then finally, a little after 2 p.m., they started the pre-treatment hydration, followed by pre-meds for the chemo (dexamethasone and two different anti nausea meds). At 5:00, the first of four, 24-hour chemo bags was started.

And me, I didn’t get annoyed once. Friends and family called asking about progress. I would tell them none and say “where am I going?”.

It’s all good. It will get done. No stress here. I’ve heard it’s not good for your health 😎

A Whirlwind of a Week

On Monday, I went to Dana Farber with Alison, not knowing what to expect. We met with the APRN, Tiny. It turns out I had a good suggestion, I wondered aloud if I was eligible for a second stem cell transplant (SCT). And I am and it WAS a good idea. (My platelets, hemoglobin, and ANC are too low to get into any trials.) They collected enough cells in 2015 for a second transplant.

Wednesday evening I started getting emails and information about a stem cell transplant on October 2nd. On Thursday, I had an appointment with Dr. Munshi where I was consented for the treatment (required of any new treatment). And discussion of there to do the DCEP treatment first (same as last time in 2015). We landed on Smilow. I spent the rest of the day getting a few pre-treatment tests. I applied for short term disability at work. (again).

This is my schedule:

Tuesday, Sept. 7

8 am, Dentist appt required for SCT
9:30 am, COVID-19 test for admission
10:00 am, leave for DF with Kirsten, for required Pulmonary Function Test

Wednesday, Sept. 8

830 am, Watch Kensley get on the bus, first day of kindergarten
9:30 am, PICC line inserted
1:00 pm, complete skeletal survey
2:00 pm, neuromedicine oncology gated card blood pool scan (MUGA) – don’t ask, I really have no idea

I also am not clear exactly when I am getting admitted on Wednesday, nor when I will be discharged (they think Monday., Sept.13). It is a 96 hour continuous infusion.

I will lose my hair, which feels like a minor inconvenience at this point.

SCT should start on or about October 2. That is a whole other story. I have only just glanced through all the protocols.

In the meantime, I am incredibly tired. I sleep for 8-10 hours at night and then shortly afterwards can’t keep my eyes open and take a nap. I have terrible headaches that can be managed for the most part with tylenol, but as hour 5 passes it let’s me know I need more. That, along with some rib pain, leg weariness, occasionally being out of breath, I am certainly not myself.