‘Believe’ from my nurse Julie

During induction therapy, in one on my hardest hours, I deeply struggled with side effects of the chemotherapy, with pain and discomfort. I had received any and all medications possible and needed to wait almost an hour before any new drugs could be tried. My night nurse, Julie, came and she stayed with me. An oncology nurse who I knew had a lot to do and had a lot of other patients. But she came to me and stayed.

I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.

She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.

I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.

Clinic Visits- April 17, 2008 and May 1, 2008

I have had two clinic visits since I last posted. A lot can change in just two visits!

Thursday, April 17, 2008

My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)

I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).

Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!

I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).

Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.

We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).

So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!

(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).

But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.

Thursday, May 1, 2008

Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).

Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.

I’ll be back in clinic in two weeks. Hopefully, with more good news!

Day 4 Consolidation

The past two days have been a battle with the spinal tap headache. I’ve read that it’s often described as “the headache of all headaches.” Courtney says, “that pretty much sums it up.” It’s really frustrating, because if it wasn’t for the nasty headaches, her stay at the hospital this time would be pretty much a piece of cake.

Yesterday was probably the worst day of the week. She was given chemotherapy to fight cancer, blood to fight anemia, morphine to fight the headache, benadryl to fight the itchiness from the morphine and phenergan to fight the nausea from the headache that caused her to throw up for the first time since this whole ordeal began.

Meanwhile, I got to leave the hospital to go to work and then spent the evening trick-or-treating with the kids (as if they needed more candy). I could dump out two thirds of the candy and they would never miss it – and I probably should – but won’t because I like candy and have a hard time throwing away perfectly good candy. Anyway, I can’t tell you how guilty I feel having so much fun with the kids while Courtney is so miserable in a hospital – even if it is a nice hospital.

And even though I know Courtney would tell me not to feel guilty and that I should just enjoy the time I have with the kids, I can’t help it. It doesn’t seem fair that I should go about doing ‘normal’ everyday activities, while she’s confined to a 10 by 10 room. I feel guilty every time I leave her in the hospital, and every time I sleep in our comfortable bed at home, and every moment that I have fun with the kids, and every meal that I can eat without feeling nauseous, and every time I go shopping, and I feel guilty every time she feels pain of any kind while I go about without so much as a sniffle. I know it’s a blessing that I can do all of this and do what I need to do to keep our family afloat, but I still feel guilty. I just wish I could trade places with her, even if was for just a few hours. Too bad we can’t tag team while fighting this disease.

So, after a rough day yesterday, Courtney followed it up with a slightly better day today. Today was an off day for chemotherapy and she didn’t need blood. So it was a quiet day from the IV pole. Her headache also subsided for awhile and she was able to get up and walk around a bit and eat some decent food. Unfortunately it came back pretty bad after dinner and she asked for some powerful meds to help her relax and sleep pain free. Hopefully the pain free afternoon was an indication that her spinal fluid is returning to normal and the headaches will be gone for good. Just in time for the side effects of the chemo to kick in. Life just isn’t fair sometimes.

Day 2 Consolidation

This is the Consolidation Chemotherapy plan:
Days 1, 3 and 5 Courtney will receive two doses of Ara-c (Cytarabine) separated by 12 hours. Days 2 and 4 she will sit around and do nothing – as far as chemotherapy is concerned. She will probably do a lot of talking. She’s always been easy to talk to, but lately she’s been especially chatty. It’s been a lot of fun just listening to her. I wish I didn’t have to work, so I could spend more time with her. But I’m grateful for the nights that I’ve been able to stay with her and grateful to my mom for helping taking care of the kids and the house so I can have this time with Courtney.

So, today was chemotherapy free once the 2nd dose finished early this morning. She had a really good day, with the exception of some headaches. Hopefully that will be the worst of her stay here, and hopefully they won’t last much longer. Her next dose of chemotherapy begins tomorrow at noon. Each dose takes about 3 hours to administer. So far, not so bad.

Day 1 Consolidation

New round of chemotherapy and new hospital. After meeting with Dr. V last Thursday and deciding that we would proceed with a bone marrow transplant, we also decided Courtney would undergo the recommended round of consolidation chemotherapy under her care at UT Southwestern. We figured that since she would be going there for the transplant, we might as well go there now, allowing ourselves a chance to get to know the doctors and facilities, and allowing the doctors the opportunity to become familiar with Courtney. This way they will have a few weeks of first hand knowledge or her condition and reactions to the chemotherapy and other medications before the transplant procedure begins.

The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.

So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!

Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.

Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.

Day 18 - Side effects

Unfortunately, today was not a very good one for Courtney. She started off the day with really low red blood cells. Anemia - it makes you weak and tired. She didn't get blood until the end of the day. So, she should have plenty of energy in her dreams tonight. Hopefully she'll wake up feeling slightly better than this morning. However, that probably won't be the case. The crummy day ended on an even crummier note as her body decided her haircut wasn't short enough. Just when we thought she might be out of the woods with regards to chemo side effects, one more has to rear its ugly head.

"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.

Day 17 - Mini Makeover Day

I don’t know this first hand, but apparently, when you spend a lot of time in a hospital bed, it’s nice to have short manageable hair as opposed to long hair that’s easily tangled and requires extra maintenance. That’s why Courtney asked a friend to come to the hospital and cut her hair. It took a few days to coordinate schedules, but Courtney was finally able to get the hair cut she’s been dreaming of…for the last five days. I love it and she does too. Thank you Angela!

As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.

Day 10 - Final Diagnosis

Well we finally have the diagnosis we've been waiting for - Courtney has the M0 version of AML. What this means is that she has just three days left of Cytarabine and the Idarubicin is finished. It means that the doctors now have confidence that they're giving her the right treatment. It means that we have a clear and concise plan as to how to beat this thing. We've been firing out of all canons and now know that we can continue to do so confidently.

Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.

Day 8

The therapy is doing what it's supposed to. Courtney's WBC's are down to 39,900, from 83,800 yesterday and a high of 102,000 when she was admitted. Within the week these should be down to zero. Essentially we are re-booting Courtney's immune system. It's like hitting Ctrl-Alt-Del on her bone marrow.

Since the bone marrow is also responsible for producing RBC's (red blood cells) and platelets, these will need to be given to her as needed. As such, she received both, blood and platelets today and will need more as the treatment progresses.

The main thing we want to see drop are blasts. The blasts cells are made in the bone marrow and are supposed to mature into different types of WBC's (white blood cells). Leukemia prevents the blasts from maturing, thus making them useless. They are included in her WBC count. Typically you want 0-5% of your WBC's to be blast cells. In Courtney's case they've been more than 95%. So, the good news is that the absolute count of her blasts dropped to 37,900 from 81,300 yesterday. Again, we essentially want 0 blasts.

At the end of seven days, her 'therapy will end and her bone marrow will essentially be allowed to 'power back on'. Then her WBC's will rise back up to their normal levels, with little to no blasts present.

So, all in all, it's expected, but good news. The other good news is that I was able to bring the kids to see Courtney today and spend some time alone with her. Thank you grandma, grandpa, aunt Kelley and Jimmie for taking care of the kids! We had a really nice visit and she's had a really good nap while I've been writing. Other than a headache, sore incision, upset stomach and leukemia, she's feeling OK. I wish she didn't have to go through this.