Feeling Anxious

[Ensnee]

Hi Everyone,

I wrote a long message late last week, but then got a FATAL ERROR and couldn’t post it. GRRR.

Hans was taken off the Methylgene study last Thursday. Not only was he feeling lousy, but his white count had gone up to 56, blasts up to 25.
We were feeling very low after talking to the study nurse and the transfusion clinic nurse. We had to stick around to talk to Dr. Schuh, and as well, Hans needed blood. He was only at 78, which I didn’t think was too terrible, but they ordered 2 bags for him which meant a long day.
Dr. Schuh was wonderful, as usual. We felt somewhat better after talking to him. He put Hans on Hydroxyurea, 3000 mg/day, to try and get his white count down, while he searches for another drug to try, which he thinks will be more beneficial. He showed no sign of resignation or giving up, but told Hans to hang in there. We even had some laughs with him.

Hans went back in for a blood draw on Saturday, and came straight back. He was able to drive himself in, and for a couple of days he seemed to be feeling somewhat better. Dr. Schuh called on Sunday to say the white count had gone down to 50, and told Hans to add another 1500 mg/day of the Hydrea. (He is also taking Allipuronal to protect his kidneys.)

Monday Hans went back for another blood check. My brother has come down from Ottawa to help with the driving and waiting, dear man that he is, while Hans’ brother is on vacation. (He’s also been able to spend some time with our Mum at her new assisted living place.) My brother knows what it’s like to go for seemingly endless tests and treatments and the stress — he survived colon cancer 3 years ago. (As he said tonight, “I have a semi-colon.”):)Anyway, the white count was down to 40. Not great, but an improvement. HGB was 87.

Today is another story. Hans is feeling very tired, and says he thinks he may need to go in tomorrow, a day ahead of schedule, if he feels this lousy. It scares the hell out of me. I coast along thinking I’m doing pretty well, and then the slightest thing hurls me down a well of worry — seeing Dr. Schuh’s name on the call display on Sunday caused me instant nausea, migraine coming, panic. The thought of Hans having to suffer is so painful…Thanks for reading, listening. Please pray for Hans.

hugs,
Esme

[patti]

Esme,

Hang in there. It sounds like Hans has a really good doctor. Keep up the laughter (I like the semi-colon joke). They say laughter is very very healing (for everyone – not just the sick one). I hope the Hydroxyurea is the answer for Hans. It’s working right now, which is good. However slow or fast something works doesn’t matter so much as it works over the long haul. Take good care.

Patti

[Ensnee]

Thanks, Patti. We do enjoy a lot of laughter at our house, not in a small part due to our daughter, Martha. Martha has shown very little sign of distress during all of this. Partly I think it is denial; but her capacity for humour and laughter is monumental. She has her dad’s sense of humour, and she loves to laugh.

I wish the Hydrea was the answer for Hans. He was on it for the first 7 months after his CMML diagnosis, and it worked well at a low dose –that is, until he turned acute a year ago. Right now, it’s just a stop-gap measure. You’re right, though — if it works for now, that’s all we can ask.

Esme

[sarah]

Prayers being said. Hang in there.

[Kathy G]

My thoughts and prayers are with you – my heart goes out to you and your family. Humor has gotten us through a lot of tough days.

Kathy G

[jeanswear]

Hang in there Hans. All my best.

[Ensnee]

Thanks so much!

Esme

[CarolineG]

Hi Esme,

I think about you all the time and keep you, Hans and Martha in my prayers. Taking this one day at a time is much easier said than done, isn’t it? But it is all we can do. It sounds like you have a wonderful, positive doctor. Hans is in good hands.

About the humour…teenagers still have the innocence of being able to remain optimistic through very difficult times. My children are that way too. None of them have shown alot of grief, except the couple of times when we were told in no uncertain terms that Opa was not coming back home. Now and again when I am at the end of my positive rope and I can only see bleak mental pictures of our future, one of them will shed some kind of a ray of hope and it hits my reset button. More than once, I have been thankful that they are a part of this. Hans needs to keep laughing and Martha is probably the one who will make sure that happens.

Best Wishes,
Caroline

[diner]

Hi Esme,
I’m sorry you and Hans are having so much stress. I think of you both often and pray for you and I also remember your advice to me at times. Don’t worry about your daughter because my two daughters acted like it was no big deal
when I had the lymphoma the first time, but they were both young and involved with their own things. When the lymphoma came back 3 yrs. later, they were totally different. They are so protective of me.
I am pretty much a positive person and laugh a lot and I know it helps my family. My mom who is 85 also laughs a lot and I still go to her for advice. She is full o wisdom.
Keep your chin up and give Hans a big hug.
Dee

[Terri]

Prayers are with you. I get my scared moments as well. Right now Bob is hanging in there and counts holding but then there are days he feels so bad that I don’t know what to do.
Keeping you in my thoughts and hope Hans is doing better

[Author]

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