Definitely not a 5* hotel

Though it often slips out of my mouth, Tom's hotel room, it certainly is far from that.  After four nights of sleeping on this "couch" I can say I have the headache and backache to show for it.  Tom has an actual "bed" but he too has a rather intense backache.  What makes this couch even more unpleasant, is the lack of cushion in it which results in a numb buttocks when sitting on it. 

If lounging apparatuses aren't enough to make it somewhat miserable, one feels like they are going through menopause sitting in here.  It seriously goes from 85*F one moment down to 60*F the next. 
While there is somewhat of a base "room service", the fun-sized soft drinks that the nurses supply us with are definitely more of a highlight than the fine-dining cuisine they serve Tom as meals.

It's no wonder that as soon as he's feeling better, Tom begins to press the nurses for any sort intel as to when he will be released (now we're talking from hotel to prison analogies).  At this point in his treatment, everyone knows my husband very well as he's what they refer to as a "walker and talker".  This simply refers to his mobility and sense of wit about him, whereas many of the patients on the ward are rather bedwritten and not so functional.  Anyway, now that many of the nurses have made the mistake of guesstimating for Tom as to when he may go home, no one will answer the question for him now... as they all know he will hold them to it.

There are "recreational activities" provided, in the form of support groups.  I actually attended the Friends and Family group last night.  The group was entertaining, definitely interesting to see how differently people have been affected by cancer.  For example, one lady was in there because her brother in law has been diagnosed with a recurrent prostate cancer and given 9 months to live... his wife (her sister) has asked that she be there when they tell their three children (ages 12 and twins at 10), so this woman came to the group to find out how one should break this kind of news to children.  That was a bit of a downer.  Another woman has been caretaking for her husband for seven years of four different cancers!  Mindblowing.  And of course there was the girl I've mentioned before, who's mother is in her 80's and has the same type of leukemia as Tom, but the treatement being so rough... has been told she is too old for treatment and has drawn up a Do Not Resuscitate order.

While the group was interesting and a good moment of connection for me, it was the hour and a half afterward that I 100% just had intent to quickly ask the social worker to stop by and check in on my husband in the morning and instead ended up going into (as mentioned) an hour and a half of me telling her all of the things that have been going on and have us so incredibly overwhelmed, to say the least.


In other news, Tom's mom arrives from England today, which is also contributing to his dying itch to get the heck out of here.  We have the Leukemia and Lymphoma Society Light the Night Walk on Saturday and I know he definitely wants to be out and able to partake in that. 

For now, I sit on the stone thats numbed my bum and ponder what to do about lunch. The house is beyond clean and ready for our guests, I have a book I could possibly read if it came down to it, and our self-made mini bar has run dry of goods... I suppose some grocery shopping is in order.

Compromised Immune Systems

I mentioned before, the unexpected hospital stays and the stress that goes along with that.  When on chemo, or at least on the hyper cvad regimen, one is sent home with normal counts with the expectation that during the homestay the immune system will completely crash.  Along with that goes all of the counts, platelets and hemoglobin included.

The worst part is, you can lysol your house until there isn't a single 1/8 inch left untouched by sanitzer... you can stick the person in a bubble, have zero visitors, follow the neutropenic diet to a T and as it turns out, the person is a threat to themselves. 

September 2nd my husband was admitted into the hospital, spent time in the ICU, had brain scans, abdomen scans... you name it-they did it.  He had e.coli... and not from something he ate, but the e. coli that is normally in a human person's body.  It got into his blood stream with his counts being low, etc. and once it was in there, he didn't have immunity to fight it off.  It was one of the most frightful times in my entire life as we waited for those blood cultures to grow and tell us why six bags of blood couldn't raise his hemoglobin levels and why the antibiotics weren't working to reduce his fever... it was terrifying.

This past Saturday his fever spiked again.  Home again after having his "even cycle" chemo (which is what he had before his previous e.coli infection), he began with stomach pain and a slowly creeping fever.  We waited for it to hit 100F and we called the oncologist and were sent to the ER, for about 6pm.  By midnight he was up to 103.9F, they had him on ice packs, antibiotics, tylenol to help with the fever... it wasn't working.  He was low on blood and platelets (coming in with a 0.1 white blood cell count, 7.4 hemoglobin and 13 for platelets), but they couldn't give him any due risk of a reaction, until his fever was less than 100F.  After a long night of contemplating an ICU stay, the nurses on the phone with the doctor, lots of blood draws, fluids, and meds... at 6am his fever made it into the 99 range and they got him the blood and platelets.  

Yesterday, his fever stayed at a low grade fever in the 99 range and with a couple more bags of blood and more antibiotics, this morning he registered in the normal 98F range.  He has remained stable all day.  Cultures came back and showed a gram-positive bacterial infection... which could be e.coli again.  The nurse said that more often than not, these secondary infections are caused by some bacterial/fungal agent that is normally present within or on the body, but with compromised immune systems they aren't kept at bay and over run the body.  Fantastic. 

Here we are, wondering what it is this time, hoping that it could give us some sort of insight as to how we could avoid this situation next time... and they tell us that the patient's own body is usually the culprit to their secondary infections. And here I was blaming myself and wondering if I prepared food incorrectly. 

In any case, I'm very relieved to see my husband is doing better.  This only makes me look forward to the "even" round next time, not.

Currently he's down having his bone marrow biopsy to check for possible residual leukemia.  Crossing all of my fingers and toes that it comes back clear, we need a win.  Good news, hoping for good news.