Round 5, Day 1 and 2

So I'm going to start my log of round 5. I think I'll just add to this blog for a few days, then start a new one for the next 3 days or so, and so on until its time for round 6. Follow along if you want!

Today I probably shouldn't have had chemo because my neutrophils and overall white blood cell counts were pretty low. The doc let me go ahead, knowing I respond quickly to neupogen shots, and knowing that I wouldn't be able to have Thanksgiving at all if we waited until next week. He did say we are taking a risk, and I should wear a mask if I'm around anyone sick (remember before he told me I didn't need a mask?). I need to watch for fevers and signs of infection, and call immediately with any concerns. I wasn't too worried until I went back to the infusion room to start chemo and my nurse (who had seen my blood counts) was REALLY surprised the doc was letting me get chemo. She assumed I wasn't. She said that's the lowest she's seen the doc allow. THEN I started to worry! But really I'm not too concerned. Unfortunately Shonna is sick with a cold, but she's been sick alot this Fall and I haven't caught anything yet. She's good about washing her hands and I put out a separate hand towel in the bathroom just for me to use. I'll stay home for the next few days too--no running to Target or going out to eat. I have to do a shot on Sunday, after my pump is disconnected, then one on Monday. Tuesday I won't need to do a shot if I get a lot of back pain from it on Sun and Mon, because the back pain indicates the bone marrow is making more white blood cells. If I don't have much pain, then I'll do a 3rd shot on Tues. Then 2 days before my next chemo I'll do one more shot. Last round I did 2 shots at home and didn't have much pain at all, which was unusual.

Side effects for today are: cramping of hands, calves, lips, and throat, and extreme cold sensitivity in my hands and feet. My calves are twitching as I sit here and I do a funny stiff legged walk. The throat thing makes it a little hard to swallow, and I have to keep it warm or it gets worse. Other than the cold sensitivity, the other cramping and such should be gone tomorrow. I feel a little tired and out of it, but not too bad.

Brennan update:
Rachel was very excited when she called me this afternoon. Brennan exceeded his minimum amount of milk at the 3pm check today! (and he pooped on his own too!) He is finally making HUGE improvements. Rachel and Ken are spending the weekend in a family room at the hospital and will have Brennan in the room with them. We might actually have him here for Thanksgiving! I'm soooo excited. Alyssa and Shonna have never held their nephew and really want to see him too.

Oh, I wanted to add something about Jaren too--he and a few other guys are leaving the Basra base and heading up near Baghdad. Something about driving around a General. Anyway, please pray for his safety. He should be heading back to the US (Utah, I think) for some training on Dec. 30th, then home around Feb 1st. Alyssa and I have been apartment hunting, and she hopes to move into someplace Jan 1st, so it will be all ready for Jaren when he comes home. Its tough to make that final decision on an apartment tho! She's being very thorough and I know she will make the right choice.

Tomorrow I'll add to this blog, and change the title to "Round 5, Day 1 and 2".

Until then, take care everyone!!
Love,
Tina

DAY 2
I didn't sleep very much last night, only a few hours. The decadron they give me in my IV with the Zofran keeps me awake. Hopefully I can sleep tonight! I do have Ambien to take, but I don't like to take it with the steroid. Not sure why, just seems like too many drugs at once.
I still have some muscle cramps, but not as bad as yesterday. I've had a little nausea when my stomach gets hungry, so have been snacking alot today.
Took my second Emend pill at 12:30. They give me 1 larger dose pill before chemo, then I take a smaller 1 for the 2 days after. I also take Zofran first thing in the morning and then Decadron after I eat. Then I take them both at bedtime too. I'll continue the Zofran for several days, but only take Decadron til tomorrow, then I'll be done with that. Although, I might try a Decadron on one of my really bad days to see if it perks me up a little. I mentioned it to the nurse, and she agreed that it might help a little, and said to just take one in the morning.
Shonna is still sick with a bad sore throat and stuffy head. I wanted her to go to a Minute Clinic or urgent care today, but she worked instead. She was going to leave early, but decided not to. Maybe tomorrow before she works at 1. I will be relieved when I finally do my Neupogen shot tomorrow eve. to raise my white blood count!
Thanks Ken for the info on the masks again. I'm not going to make Shonna wear a mask, but I do worry about surfaces she touches, even tho she is good about washing her hands. I wipe stuff down with disinfectant wipes.
Thank you to the Bridgewood folks for the 2 meals this week!! Much appreciated! Rich was just going to have cereal last night, but instead we all had yummy soup (and too much cake :)
Tomorrow I'll start a new blog--this one is getting too long. :)
Blessings!
Tina

Chemo Round 2 Of 8

Maybe I should say round 6 of 12? Because these 8 rounds are a continuation of the 4 I had in the spring--for a total of 12 rounds. But the side effects are more like a round 2 than a round 6. If that makes any sense :) .

My blood counts were a little low, but still within the range that my doc allows for chemo. We discussed doing the Neupogen shot to increase the white blood cells (specifically neutrophils), but since I can't take ibuprofen for the pain (because of my blood thinners), we decided to hold off until next round. By then I'll be done with the blood thinner shots (Lovenox), and will be able to take the ibuprofen before the shot.

I can stop taking the antibiotic for the c-diff, but the doc said he was going to double check with the infectious disease doc to see if I should stay on it longer at a lower dose. He said he was going to do that last time, so I hope he remembers this time! Because of the c-diff, I haven't been able to touch my grandson, so I'm hoping by the time he comes home in a month or so I'll be all clear to hold him!

I did get the flu shot today. It was for the seasonal flu, as they don't have the H1N1 shots yet. I asked the doc if the flu could kill me, and while he didn't say no, he did say that those with the blood cancers (like lymphoma) are more at risk because of their suppressed immune systems. While my counts get low, I still have a working immune system to help fight the flu. But it is weaker than a normal, healthy person. I asked him if they (the ones with blood cancers) are the ones I see wearing the masks, and he said yes, and I don't need a mask.

So, while I was sitting there getting my chemo, Shonna sends me a text that says "I called in sick to work--don't come near me or you will die". ( That's typical Shonna drama:) ) Turns out she has a really bad sore throat and headache. These are the same symptoms my oncology nurse, Cheryl, tells me her son had about 3 weeks ago and her doc thinks it was H1N1 and gave her son Tamiflu. Great. Shonna is staying away from me and in her room as much as possible, but we do share a bathroom. I think I'm going to put out a separate hand towel just for me. I'm going to try to get Shonna in to the doc tomorrow. If I tell them I have cancer, maybe they'll be willing to fit her in! Shonna said several kids in one of her college classes all got sick around the same time. She's been using hand sanitizer and washing alot, but really, this flu virus is airborne and hand washing might not help all that much (although its still recommended).

So far my side effects have been stronger than last round. I've been getting the hand, lip and calf cramping, and my throat is more affected by the cool air. I brought my new scarf with me, and I'm glad I did because I really needed it. I still have it around my shoulders so I can breathe into it every now and then to warm up my throat. I still get that weird pain in my jaw from my salivary (sp?) glands everytime I eat something. The first few bites really hurt, then it stops. I don't remember what the doc said about it, but its normal for this treatment.

Typing is getting difficult, and I have a headache, so time to stop.

Love to all!
Tina

Shot Instead of Chemo

Just as I suspected, my "neutrophils" are low (type of white blood cell), and I had to get a shot of Neupogen instead of chemo today. That's the shot that caused me so much pain last time. This time I took ibuprofen and Tylenol BEFORE I got the shot, and so far I'm doing ok. The shot was a lower dose, and I'll do another one tomorrow. I'll have to give it to myself here at home. Then Friday I'll go back and get my levels checked and, if everything is ok, I'll get my 4th round of chemo then.
I still have a fever lingering, but its under control with the meds. My allergies are bothering me too, but mostly I just feel tired. Took a nap when we got home today. We were at the clinic for 3 hours or so, because there was some problems with insurance and letting me have a shot at home. Our insurance is very good overall, but when it comes to "specialty" drugs (meaning expensive!) they are very particular how they handle things. But the way things turn out, I think they end up wasting more money than they save! They are going to Fedex the shot to my house instead of letting me pick it up at the pharmacy--how is that saving money?
After I get round 4 of chemo, I found out today that I have to wait 3-4 weeks before starting radiation. The Oxaliplatin drug needs to be out of my system first. I have an appt. with the radiation therapist on June 17th. Radiation will start sometime after that appt. The good news is that will give me a bit of a break from side effects, the bad news is that pushes my whole treatment out a little farther. That's not really "bad", just another adjustment--one of many it seems! The soonest I could be done with everything is probably around mid- Nov. Just in time for my grandbaby to be born!
I also found out --or just realized--that while I will be getting the 5FU drug during radiation, its the Oxaliplatin that causes the cold sensitivity and hair thinning--so I'll be getting a break from both those side effects--yay! Hopefully the radiation side effects won't be too bad.
I'm going to close with some lines from one of my favorite songs I heard on the radio today:

I will walk by faith

Even when I cannot see

because this broken road

Prepares Your will for me

(Walk by Faith, by Jeremy Camp)

Love and Blessings!

Tina

Good News, Not So Good News

Well, my white blood cells and other related numbers went up, but not high enough to get chemo tomorrow. We are going to try for next Wed. The doc thinks they'll go up enough without another shot, thank goodness! I think because it hurt so bad yesterday, he decided not to do another one today. And by delaying chemo a week, my blood cells should build up on their own. It's technically not white blood cells that the doc is so concerned with, its "neutrophils" in my bone marrow, and when they are low it's called neutropenia (this concludes your medical lesson for the day!).
The difficult part of all this is it throws off my whole schedule! I had really hoped this wouldn't happen this soon. I've got subs all planned at work, people are scheduled to bring meals according to my chemo schedule, and now it's going to be the opposite weeks! I feel so bad about work. I'll be missing even more days now. I keep telling myself its not my fault, and there is nothing I can do about it, but I can't help but feel bad. I am so blessed to work where I do!
As for the food...considering I really don't feel like cooking AT ALL these days, it doesn't matter when it comes--we'll take it! And maybe some meals I can freeze.
You guys have no idea how much I appreciate everything everyone is doing for me. God Bless you all!! I always pray for extra blessings for those that are taking their time to cook, pray, send cards, give me Milk Duds ;), think good thoughts, whatever! So be prepared for God's blessings!
My back still hurts off and on. Major movements, like stairs, standing up, or sitting down send temporary electric shocks up my back, and I'm still taking Tylenol and ibuprofen. The nurse said my fever yesterday could have been caused by the shot too. I wish they would have told me that before I worried that I was getting some horrible infection my body couldn't fight off! I'm tired and often have a headache, but that could be all the stress too. But, hey, these are all minor, and I'm not complaining, just updating how I'm doing. It'll be nice to have extra days without nausea!
It's almost time to eat a yummy meal provided by a co-worker! I'm very thankful to have it today!
Love and Blessings!!!
Tina