Thursday, August 9, 2012

Our "biochemo" treatment routine

Madeleine’s Blog 

August 9, 2012

So do not fear, for I am with you
Do not be dismayed, for I am your God
I will strengthen you and help you
I will uphold you with my righteous right hand
Isaiah 41:10

Hampton Inn & Suites - Riverside
We are home again! This was our third trip down to Riverside, and we are getting to be in more of a pattern now. When we drive out of Santa Rosa and head down south, it is like we are stepping into a different world. We finally get to Riverside after 8+ hours of driving, and then check into our hotel - The Hampton Inn & Suites. The staff there has been so wonderful to us - giving us a special
"Kaiser" rate, and upgrading us to a suite at no extra charge. (Madeleine only gets to enjoy the room the first and last nights of our stay - but her aunt and mom take turns using the hotel room for rest. Her mom stays with her at the hospital each night, sleeping in the pull-out chair next to her bed.) That first night in Riverside, we head out for dinner at the Cheesecake Factory, where Madeleine always orders a side of brocolli (because they do perfect brocolli there!), another side dish, and a kids-size Sprite.

Dr Gailani
The next morning, we go to the hospital and get a round of blood tests an hour before our appointment with Dr. Gailani. He does an exam and talks with us about her treatment - he knows just how to talk with Madeleine to put her at ease about things, and he has a great sense of humor. After the appointment, they tell us to go out to lunch and to come back afterward and check in to the hospital. Where do we go for lunch? The Cheesecake Factory, of course! Good thing they have a huge variety in their menu :)

Madeleine gets admitted to the hospital, checks into her room (so far we've always been able to have a private one), and waits for them to take her down for surgery so that she can have a "central line" put into the vein in her neck (they put a new one in each time, and it is taken out at the end of the week's treatment). This line allows them to infuse the chemo drugs and take daily blood tests without poking her again. The actual procedure goes quickly and is done with local anesthesia, but it is a little unnerving to think about what they are doing and that they have to be very careful about preventing infection.  We always pray with her before this procedure and have been grateful to have a wonderful tech who takes her in and stays (and prays) with her during the surgery when we can't be there. Afterward, she has a chest x-ray to confirm that the placement is right, and then she is taken back to her room. By then it is usually near dinner time, so rather than eating hospital food, Madeleine decides what she wants and we bring the food in. She has no restriction on her eating while at the hospital and because chemo takes your appetite away, she is encouraged to go with whatever sounds good to her. All that night, she just gets fluids through her line in order to make sure that she is hydrated when chemo starts the next day.

Chemo nurse
The next morning, chemo begins. It is a little disconcerting to see the nurses gear up like they're dealing with "toxic waste" each time they attach a chemo drug - especially knowing that those same drugs are going into your body! (We asked the nurse about it, and she explained that they are careful with exposure and prevention of spills because exposure to chemo by someone who isn't the patient may mean that it is less effective on that person should they ever need it.)

Madeleine takes one of her chemo drugs in pill form each morning, and the rest are infused into her line at different times of the day. Interferon is given by shot daily after lunch time, and that shot often causes high fevers and shakes during the next hours. We definitely pray before each of those shots too because you can never really predict how the reaction will go. Even when Madeleine feels "cold to the bone" because of fever, she has the determination to keep all her sheets and blankets off to help keep the fever as low as possible in order to help avoid the worst of the shakes, the extra drugs they give you for the shakes, and the ice packs they have to put on you to keep your temperature down.

As the days of treatment progress, her appetite decreases and this is to be expected. We try to bring her whatever she feels like eating, but (honestly) not much sounds good - not even Cheesecake Factory food. By the second day, we don't open the hospital meals inside the room because the chemo drugs make her easily nauseous around those smells. Fortunately, popsicles and fruit are often acceptable, so we keep those on hand.

We have been impressed with how well the staff and doctor anticipate her needs, and adjust medications in order to combat symptoms when they first arise. Because of their attentiveness and expertise, the negative symptoms have been manageable (even when they are difficult) and are not allowed to get out of hand.

Another thing that has helped is that Madeleine has learned what works for her and what doesn't - and to ask for what works. And, a lot of the initial fear that was present during our first visit has faded as she has successfully come through each procedure.

One of the hardest things about the treatment is being so far away from home and friends while having to endure long hours in the hospital. Because of all the medications, it is difficult to concentrate on anything for too long (not even the Olympics!). It is also hard to come back home with such low energy - during the first week especially. Those of you who know Madeleine, and her love of being active and at the gym & pool, will appreciate how this is a challenge for her. But, as the days go on, her strength comes back and it is so wonderful to get back to feeling more normal by the second week home.

We go down for the fourth treatment during the week of August 19th. Thank you all again for your prayers and support during this time - you have been such a blessing! 

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