Saturday December 24, 2016 [but not finished until December 25, 2016]. Merry Christmas and Happy Chanukah. About time it all happened (started) on the same night.
[Disclaimer (and to be sure the reference to two dates above are not confusing): when I refer to “today” I am referencing December 24, 2016. All events described below — with the exception of a few that actually happened on the current day (December 25th, as described in point 10 below ) — occurred on December 24th.]
Today was my third day of house arrest, but the first time I left the house since Wednesday when this was (supposedly) all over. I say supposedly, but I knew that there was going to be a significant recovery time. It took 10 days for my blood counts to recover after the last 43 day cycle (and before we could start the next cycle (three days more than I was planning, which was frustrating but obviously OK)). I am hoping for shorter this time, but I am realistic and understand that the recovery process is a blessing. My plan is to start back life on January 3. I am going to shave and attempt to go to the office. But everything is “play it by ear.” I am now realistic (we will see how long that lasts in January). I also know that if I over do it, there is nothing good that will come of it. I have not been active for eight months. This will NOT be like riding bike. Again, a blessing.
I say Full Circle (But Not Quite), for a bunch of reasons.
- Just as when we drove home on May 13 and I had no clue what was really coming (other than that I felt so good reconnecting with so many people and overwhelmed from the support of so many different people), I really don’t know what January or February (or beyond is going to actually look like). But it is not quite full circle (not even close) because I know I am going to recover. Just a question of time. Huge.
- I went to the hospital for a blood check this morning. I was supposed to get platelets and potentially blood tomorrow. If I didn’t feel like I needed blood, I could wait until tomorrow and just get platelets. But if there was a chance I needed blood, they need to test Saturday for type and screen. [I know my type at this point (I have had 15-20 blood transfusions — not sure any of the blood in my body is my own — but hospital policy is that a test expires after three days. So you have to retest overtime to make sure]. Knowing what it feels like at this point to need someone else’s blood, I decided to drive in. When they said they were only doing a type and screen test, I said OK. Full circle. But a few minutes later, I called the nurse practitioner back over (after getting poked twice for blood) and said I would like to do a test for all my levels. I was concerned it was low and I needed to know if I needed blood. She said that if it was less than 7.0, they would need to admit me (she was worried about the holiday). Not quite full circle, because in April I might have said let’s wait until tomorrow. Today I said better safe than sorry (and spoke up on my own (small victories people)). My hemoglobin level was OK (8.8), but my platelets were 10,000. They transfuse at anything less than 20,000. Based on quick research and reviewing the tests over the last eight months (where they give a range and say whether you are under, over or in between), a “normal” platelet count is 150,000-450,000. On Wednesday I had 17,000 (and received a transfusion). This means you cannot heal from a bruise or poke. [My arms look like I was beaten with a stick.] They told me to come back tomorrow for platelets. I didn’t push too hard (but asked if today was possible when I first got there and was told it was too busy (which it was; everyone likes to get the chemo and transfusions in before the holidays), so I went and got in my car to head home [Jen was texting me saying I should call/e-mail my Dr./PA to see if I could get the platelets today, but I told her it did not seem possible. Jen is always right (but doesn’t mean she doesn’t drive me crazy!)]. My PA called within 8 minutes (I was on 77th and 2nd going to pick up some food for everyone). She said I should turn around, get the transfusion and not come in tomorrow. So I did. Took about 45 minutes to get the platelets and I was home by 1:00 pm. Not planning to leave the house tomorrow (unless I get a fever because my white count is so low and I am taking my temperature religiously). [JINX!] Full circle (but not quite) because I should have said let’s just do the platelets today and/or listened to Jen and called my Dr./PA before I left. Oh well. Again, a blessing (and great problem to have).
- On April 28, 2016 — my second night in the hospital — the Browns had high hopes for the season. Robert Griffin III was healthy and locked in on a new two-year deal, the Browns made what we thought at the time was smart trade to load up on draft picks (and pass on Carson Wentz), and there was hope for a new coach, front office and revamped team. We went to opening day in Philly. The Browns stunk and Robert Griffin III was injured. He didn’t return until a few weeks ago. Today, the Browns won their first game (season record: 1-14). I read so many articles the last few days about how they were the worst team ever. Not anymore. Ugly win. And unfortunately Robert Griffin III was hurt again (concussion).
- I chatted with a very nice couple this morning in the infusion center. The woman was giving her husband crap about not drinking water. She commented that I had a huge 2 liter bottle with me. I asked if she thought it was the result of me bringing the water, or my wife packing it. She laughed. As did he (he was hurting big time and needed to be helped from a wheel chair to the infusion chair). He was also in need of platelets. We had a great conversation and it turns out we have the same doctor. Whom (together with the entire team) we think the world of. Small world. I think they forgot for a few minutes how crappy they felt (and how much they have been through), especially on X-Mas eve. They have been fighting way longer. I listened to what they have been dealing with for over two years and, of course, I told a few stories of my own (they wanted to know how this happened, what I do, about my kids etc.). We had a few hours and I can chat it up. It is also distracted me from waiting for the blood results; just like at the beginning, I have an intense fear of staying in the hospital unless mandated (except for May when I felt comfortable there and nervous to be home for lots of reasons). I was pumped when the hemoglobin test came. Still feel like garbage, but completely expected after 43 days of chemo.
- It still takes me a while to figure out what is going on. I was on chemo pills until Tuesday. Since it is not a drip, you forget how potent three pills a day for several weeks (in addition to everything else) can be. I knew this from Jen and Lenny but my conversation with the nice couple reinforced it, because the man has not had any transfusions of chemo, only pills. And he is banged-up. It was causing swelling and pain. And constipation — just like at the beginning (when combined with the chemo). I started on some meds today (like I did the first few weeks). Too much information, but another example of almost coming full circle. I wonder if this is leading to my mild case of insomnia? [I also know it is why it is hard to eat, yet I am starving so I just deal with feeling like I am going to blow up!] Last night I slept from 1030-2:59. Plus, I am in the guest room again (like I was in May). No clock (not sure why), so I roll around and ultimately turn the TV on hoping it is 5 or 6 am. Two nights ago it was 12:59 am (so frustrating). Last night, almost 3 — not so terrible. Hoping it starts getting better. But my mind is racing with excitement and I have headaches and leg pains at the same time. I feel terrible keeping Jen up when I watch TV and ultimately give in and look at my phone (the light never let’s you rest). But I find amazing (and scary things) on the internet. I have never searched more in my life than in the last eight months. Here is the inspiring story I read around 4:30 am. Riley Sorenson — we will be watching The Holiday Bowl Tuesday and hope to see you on Sundays with my boys in 2017 when we watch the “Red Zone” all day long.
- Jake and Ryan are in NJ tonight (sleeping at Kim’s and Justin’s house) and then heading to Philadelphia to hang with my in-laws for a few days (my in-laws drove to NJ to pick everyone up because I was planning to have a transfusion this am). As much as I want to be with the boys (full circle), I really cannot be near them right now and it is harder to be here and not be present. So I will take advantage, hopefully recover some more, and enjoy the end of the holidays and New Year’s (when we rip off December 2016 and start 2017). Jen will stay here for a few days with me (after dropping Brandon off in NJ tomorrow am) and go get them and bring them back Thursday. [Jake and Ryan sleeping out last night turned out to be another blessing. See point #10 below.]
- I am posting at the same rate as I did at the beginning. Full circle (but not quite). At the beginning, and I have said it many times before, I was overwhelmed my the outpouring of support (which has lasted throughout). Today, I am so excited to have gotten through the protocol and be in a position to return to life.
- I walked on the treadmill yesterday. Kind of disappointing: 3.5 and 0.5 incline (for 40 minutes). Legs very heavy. Dizzy. I was upset when this happened in May. As upset as I wanted to be yesterday, I know it is going to take time. Just getting on is half the battle. [But I took today off for lots of reasons.]
- A very good source recently questioned my use of agida vs. agita (he left it out there as a rhetorical question although I think he was telling me I was wrong!). I had thought I had done some research on this early on and was very confident. I used “agida” in a recent post and I was sent a link explaining why “agita” is the right term (with a dictionary explanation). Full circle. I need to go back and fix. Along with a bunch of typos (Jen is all over me). No excuses (although I could come up with quite a few!).
- I was about to post the points above last night and take a shower before Evan and Carrie came by for dinner. I had a pretty bad headache (and the chills all afternoon), so I decided to take my temperature yet again. 102. Then 101.9. I went upstairs and took a shower. Did not feel great, but was thinking I was overheated from being in my hot home office. I laid down on the bed after the shower and took my temperature again. 97.6. Texted Evan and Carrie and said we were on for dinner. 15 minutes later I decided to take my temperature again. 101. A few minutes later it was over 100. The next time it was 99.4. Better to be safe than sorry, I sent an email to my Dr. and PA explaining the fever and headache, and called the clinic so the Dr. on call could get back to me. The Dr. on call called back and said I should come to the ER. My PA called me a few minutes later and said the same thing. And my Dr. (who is on vacation), emailed back saying that unfortunately an ER trip was necessary and she asked about the headaches. As soon as Evan and Carrie got to the house (Brandon, who did not sleep at Kim’s, was sleeping upstairs), Evan said he was taking me to the ER (I would have taken an Uber otherwise). He has been to the ER as many times as me during these eight months (I think three). This was an extra “special” trip. The ER is always fascinating (for so many different reasons beyond the scope of this post). Because I was neutropenic, I was escorted to a quarantined room. [A few good pictures will follow.] And because of the headaches and risk of infection, they needed to run lots of tests. We got to the ER around 8:30 p.m. I put a mask on for the second time in my cancer-career. After the resident scared the crap out of me (talking about the possibility of meningitis — I was on the phone with Jen and Lenny immediately), they started antibiotics and we waited for other tests. I was freaking out (so grateful Evan was there). An EKG, CAT-scan (to check for bleeding in the brain) and lung x-ray followed. There was a nose swab (to test for the flu and other viruses). And several blood cultures. While we are waiting for the blood cultures, everything else came back OK. My hemoglobin, however, dropped from 8.8 to 7.4 during the day (and 6.9 this am). Probably explaining the headaches, although we have had them for a few days. We are getting a blood transfusion now (going very slow) with another to follow. Also have had IV antibiotics (and it was not easy to get two IV’s in. The IV specialist suggested I get a PICC line today. I laughed.). Full Circle. Jen is next to me (after dropping off Brandon in NJ), and may even stay here tonight (just like on April 27). But, just like everything else, not quite full circle. I am not planning to stay in the hospital again. But of course will be careful. Lower back and hip pain started today, which we welcome with open arms; this means the white blood cell shot/booster from Wednesday is starting to kick in and my body is making white blood cells. Evan — can’t thank you enough brother for being here all night and into the morning. And of course you too Carrie, for being there with Jen (who obviously wanted to be here but needed to be with Brandon). All will be fine — this is part of the process. And that process (at least the hard part) is coming to an end soon.