Monday, December 1, 2014

Four down, eight to go, yes, I counted my chickens before they hatched.

Today was day 4 for my chemo and I saw Dr. Rao. It was only the second time I'd seen her and the first since I had started the treatments. She was very surprised at the reaction I had from the first dose, she said she had 85 year old people taking the same thing I was and they never reacted that bad. Dr. Rao did think a lot of it was the fault of the Neulasta shot, I only took it once and opted for the 7 days of GCFS at Cherokee instead, I've not had any bad reactions with it.

She said they would continue with the 1/2 doses since I got along well, so instead of 6 treatments with the full, 2 day dosages, she wanted me to have 12 treatments. My heart sank and I told her what Dr. Wender had said. Dr. Rao said I could do that but in her opinion that was not the way to go, that was just keeping the lymphoma at bay, not working the best to cure it. She said I could go on the maintenance pills, they are expensive and some insurance companies balk, and they can have some bad side effects but there is a very good chance in two years I would be back starting from scratch and I don't want that.

That is the problem about being shuffled from doctor to doctor but if I had to choose who I trust the most, it's Dr. Rao. I've heard from a lot of people how much she is admired and respected and I guess I still hold the mouth sore comment against Dr. Wender. When Dr. Rao saw how disappointed I was to be facing treatments all winter, she again told me that this is a very curable form of cancer and she thinks this is the best way to go. She did tell me if I wanted a scan after 6 treatments, they would set one up but she would still want me to do the remaining 6 so I really can't see doing it. That's another trip to Sioux City, more expense, more time, I'd rather wait till the end.

Back in the waiting room, Bruce held my hand and said he knew how disappointed I was but he also felt this was the way to go. He said he wanted me around for a long time and we need to do whatever we have to, to achieve that, more tears flowed but these were tears of gratitude for such a loving husband, how was I so lucky?

It was a full house down there, I've never seen so many people in the big room. I was so close to getting a private bed, my favorite since I'm quite anti-social, I've never become one of 'them', but it was waiting to be cleaned and they wanted to get me started. I got to go to the little 3 chair room but soon the other two chairs filled and with all the trays and IV poles, Bruce hardly had room to sit. He had an errand to run so I encouraged him to leave after they got the IV going, as soon as I get the Benedryl, I'm gone and didn't wake up for a couple of hours when Bruce returned. 

The treatment went well, the nurse was able to bump the Rituxin up to a higher rate than I'd ever tolerated, I did wake up with a headache and tight chest but it wasn't bad. I requested a Dr. Pepper because sometimes a jolt of caffeine will knock out a headache, well that and an Aleve did the trick. Since it was pumped at a higher rate, we didn't have such a long day as we had thought and was home by 5:30. 

I've said before that even though I was dragged kicking and screaming into this, I've been humbled at the kind, compassionate care I have received, along with such kindness to Bruce and Janet as far as meals, drinks, anything for their comfort. This was Bruce and my first solo trip without Janet as she and Foof are on their way to Texas for the winter. Today we had the wonderful Mary Ann who guided me through the first treatment with another nurse in training. After the evaluation was complete, she said they had a couple of gifts, one was a homemade Christmas/get well card made by some kids in the school system for every patient, it was so touching and that made the tears flow. The other was a gift card to Fareway from funds that are raised every year from a 5K walk/run that is then used to help patients with any needs they have. So if I have to spend the next 7 months or so running to Storm Lake and Cherokee for appointments, we're lucky to have them. And if you can hug all your nurses at the end of the day, we are double lucky to have them.

3 comments:

  1. Oh, it's disappointing to have more of these to look forward to...but I agree with the plan to try to eradicate it rather than keep it at bay. I wish there was a way that you could always see the doctor you prefer instead of taking whoever's turn it is..but maybe it will be Dr. Rao more often than not, we'll hope so! Guess we just "recalibrate" and carry on, at least it seems like you have found a way to tolerate the treatments to get what the dr feels is necessary for the best outcome. Forward, then.

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  2. Well, honey, I am sorry to have missed this day with you, but you had Bruce with you, and it sounds like between the both of you, you worked it all out and made a decision, one I would agree with. We want the best for you, and if that is what it takes to get it for you, at least you have great people to help you through it and you can do it, we know. I am so glad that it went well today, and you know that the seven GCSF shots works well for you, so at least you have the comfort of knowing you should get along well after each treatment. We will just keep praying for you and let God do the work, right? Right! Sounds like a pretty red lettered day! Love you both, Janet

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  3. and so it goes Julie, I am disheartened for you but then again, if you have a doctor you trust, then you just have to go with that trust and she will see you through this. what a see saw you have been thru!! best thing is as Shirley said - you now know how to attack these side effects and there's nothing like being prepared. hang in there kiddo - prayers and love to you both and I do hope the time can fly by for you. God's love to protect and support you - CG

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