Thursday, Sept. 30

Sorry I haven't been blogging as much. Frustration has hit a fever pitch with me this past couple of weeks with the folks at ITA. And, frankly, I've been too stressed out to even blog. We've had so many issues with Mike's catheter. They had to repair it yet again today because the repair last week wasn't done properly and the lumen is seeping out blood. ITA was short staffed today because of some symposium going on, so there was no one there on-site who has done a catheter repair before. And the gal who did the repair last time was off today.

So, here we were--stuck with a nurse who is inexperienced with catheter repairs. The nurse actually said to us that Mike was going to be her 'guinea pig'. Obviously, this set me off. After all, this is the second catheter line installed in Mike and the third time his catheter had to be repaired. I asked that someone else perform the repair, someone who has actually done it. Nope. We are stuck with her. The only other person who 'is' experienced is not certified to do it. Every time they repair the catheter it opens Mike up to infection. I pray, pray, pray that this one will hold up.

The RN today told me that they have an issue with me because I raised concerns about the competency of nurses doing catheter repairs. I don't care if they have issues with me. I'm trying to be an advocate for my husband. I'm going to continue to ask my questions and speak up if I feel that something isn't right. Today is not a good day.

I'm simply, absolutely, completely, positively exhausted. The uncertainty is the most exhausting part of this process. I'm mustering every fiber of my being and trying to stay upbeat and positive, but it's been difficult.

Today's blood counts...

What a difference a couple days make. On Friday, Mike's labs (for the most part) were looking good. Today, the counts that we want to see going up are down.

WBC: 3.9 (normal 4.0 - 11)
Hemoglobin: 9.1 (13.5 -17.7)
Hematocrit: 25.3 (40-52)
Platelets: 142 (150-400)

Tomorrow, we're headed back to the cancer center where Mike will get a blood transfusion since his hematocrit count dropped below 28.

The nurses say not to worry that his counts are trending downward, which is easier said than done!

Day +57

Mike always says, "No news is good news". This past week, things have been going pretty steady, so we haven't had much to update. Mike's lab results on Friday, 9/10 was:

WBC: 5.1 (normal range 4.0-11.0)
Hemoglobin: 10.1 (13.5 - 17.7)
Hematocrit: 28.4 (40.0-52.0)
Platelet: 158 (150-400)
Magnesium: 1.2 (1.8-2.2)

There was a new comment/notation on his blood lab results which reads, "Cold agglutinins present. Specimen warmed". We asked his nurse what this meant and she had no idea and told us not to worry. She said that if it were of any concern, the docs would let us know about it. We also asked a second nurse, but she, too, could not explain what it was but said that this was something common that they see on lab results. I'll need to track down a doctor ask him/her about this so that I can rest assured that this is, indeed, not an issue.

Mike's Hemoglobin and Hematocrit levels are still on the low side. If his Hematocrit level drops below 28.0, he'll require a blood transfusion. His magnesium level continues to be low even though he gets mag infusions at the hospital as well as taking mag supplements at home. We also try and eat foods that are rich in magnesium.

Why is magnesium so important? Magnesium is an important electolyte needed for proper muscle, nerve, and enzyme function. It also helps regulate energy production in cells and is needed to move other electrolytes (potassium and sodium) into and out of cells.

Overall, Mike's feeling good. There's minor stuff going on (recurring bouts of diarreah, fatigue, and post nasal drip which causes occasional sniffles and coughing), but nothing major that we are aware of. The nurses say the diarreah is due to the intake of magnesium tablets and the fatigue is due to the low red blood cells.

Day +48

On Wednesday, Mike had another blood transfusion due to low hematocrit and hemoglobin levels. The effects Mike's been feeling of having red blood cell (RBC) counts include fatigue and lightheadedness. We had lab work done today at the hospital and the results showed that the the transfusion did little to increase his RBC counts. In time, these counts should get back to normal ranges on its own. Until then, he'll need to get blood transfusions. Mike also got another magnesium infusion today as well.

WBC= 5.3 (normal 4.0-11.0)
Hemoglobin=10.4 (normal 13.5-17.7)
Hematocrit=29.4 (normal 40.0-52.0)

Things are continuing to move forward and we are nearly half way through our 100 day mark (Phase One).

Thanks for your calls, emails and letters. It keeps us connected to the 'outside' world!

Mastercard moment

Early in the evening Mike had a little more energy--enough so to do some dancing. We popped in the 'A Night at the Roxbury' movie soundtrack into our CD player, blasted the music through our speaker system and started dancing around our family room like a couple of dancing fools.

A Night at the Roxbury CD soundtrack: $15.99, KEF 5.1 speaker system: $2,000, Mike Wu dancing and shaking his bon-bon.....Priceless.

Another day at ITA

Greetings from the Cancer Center Library. Mike's upstairs in the Infusion Treatment Area (ITA) and getting his infusions of DHPG and magnesium. Mike's white blood cell count is within normal range, but his hematocrit, hemaglobin and platelet levels are lower than normal. The doctor says that it could be due to the DHPG medication.

This week has been a little off for Mike. He's not feeling as well as the previous week. He's had some recurring bouts of diarreah, increasing fatigue level, occasional coughing and low grade fevers. Today the doctor sent his blood samples to get cultured to see if there's any infection going on. We won't know the results of the blood culture for another couple of days.

Overall, things are moving forward. Some days are better than others. Mike and I are getting used to our daily routine to/from the Cancer Center (occasionally we get a day off if his counts look good).

I always say, "thank goodness we like eachother as much as we do!" It goes without saying that we love eachother, but we also truly like eachother--which is a good thing since we are in home isolation mode when we're not in the hospital--it's just him and me, in our little home (with no air conditioning). At first, I had a tough time transitioning away from working at my company (which I really enjoy) to being a full time caregiver at home. But, it's really a blessing to be able to spend all this time with Mike.

We mostly spend our time watching TV and Netflix movies. We also talk a lot. We have healthy debates over politics and the state of the world and, most recently, the Paul Hamm (olympic gymnast) controversy. We also talk about our childhoods--I so enjoy hearing about his childhood and upbringing. He often speaks fondly and lovingly about his grandmother who was such an instrumental part of his life.

In my opinion, he has had his share of challenges growing up in Taipei, moving away from his family to live in a small town in Texas at the age of 12 (not knowing any English), eventually making his way to Davis, CA at the age of 14..... Because of certain circumstances, he's had to grow up quickly at a very young age. One can look at these previous circumstances as setbacks or hinderances in life, but Mike never saw them that way. He's always had the "glass is half full" mentality. Everything that has happened in his past has molded him into the responsible, hard-working, dedicated, generous, loving, successful, humble, take-nothing-for-granted guy that he is today. He has a great perspective on life.

In need of a heating repairman

Does anyone know of an honest and reliable heating repairman that services the Sunnyvale area?

A few weeks ago, before Mike was discharged from the hospital, I smelled gas (ever so slight) in our furnace area. I called PG&E to come out and check it out and sure enough, we've got a small gas leak coming from the pilot light module. PG&E says we don't need a whole new furnace, but we need to have that part replaced.

So, if you know of anyone, please pass the information along to me at hummer@gmail.com or post a reply to this blog.

Thanks!

Day +33

Mike got a blood transfusion today because his hematocrit level was low. We were watching the news recently and heard about the blood shortage at the blood banks and the need for blood donors. We're fortunate to have had blood when Mike's needed it thus far. He's had quite of bit of platelets and blood transfused in him. I can't imagine what it would be like to need a transfusion and not have a supply of blood available.

During the hospital visit, Mike also got his infusion of the drug DPHG (for prevention of CMV virus) which he'll continue to get for the first 100 days post transplant. He's still taking a bunch of other drugs (as mentioned in his blog the other day) as well.

I'm hoping that the weather cools down a bit. I think we'll invest in an air conditioning unit before next summer rolls around.