Hello! I'm sorry that it's taken me so long to write.
I do have some things to tell you about! Last night, Eric and I were playing soccer at a nearby park with Brennan and four friends. While I was taking a breather, our five-year-old friend came over and took my hat off. Her reaction was priceless; she took one look at my beyond-thinning hair and said, "Whoe - I wasn't expecting that." HILARIOUS! I think she has successfully summed up my current hair status. What I wasn't thinking about at the beginning of this journey was how long my hair would be crappy post-treatments; I suppose there were a few others things to think about. Luckily, I like hats.
Brennan and I walked to the beach the last two days in a row. The beaches here in Chicago can be quite stunning. My point is twofold.
1. The beach we walked to is 2.5 miles round trip and it has been humid. What are you talking about Kari? My lungs... my lungs are slowly feeling better. There have been a few humid days where I had to find airconditioning and sit down to catch my breath, but I hope those days are over. It's really quite odd not being able to breathe normally. When I was in my early 20s, I had a few months of panic attacks. Panic attacks are typically related to a fear of death; mine were specifically triggered by the fear of death via suffocation. The Universe has a wicked sense of humor altering my ability to breath, or perhaps they just know how to make a woman stronger. Luckily no panic attacks .... just fun with breathing exercises. aka. blowing up brennan's pool. I think it may have helped .. and no don't bring your children's blow-up toys here for me to blow up. As for what it feels like to have crappy lungs - it just feels like my lungs won't inflate all the way.
2. Remember I had two points ... yeah ... no clue what the second is. Perhaps, I do have a little chemo brain. Supposedly, people in chemo who are a bit cloudy during and after treatment are said to have chemo brain. I don't know about you, but when I think of chemo brain, I think of poison killing my brain cells ... ah well ... In "Dumb and Dumber" no one knows which of the two stars is dumb and which is dumber (or do they?).
Other things that have happened recently (remember no salad during most of chemo due to low white blood cell count and the risk of infection):
I ate a salad!!!!
I ate celery!!!!
I ate celery in a salad!!!!
I started juicing vegetables.
I ate pears
I ate plums
I ate mangos
I ate raw beans (just because I could).
I ate blueberries.
I ate strawberries.
I ate bok choy in a salad (it's not very good).
I had the runs (too much info .. and not true ... but funny ................................um yeah.)
More again soon. I have more to tell you...
Thursday, June 30, 2011
Friday, June 17, 2011
Update
I just wanted to write quickly to say that all is well on the Robbins' home front. I'll write more soon, but here's the quick update:
Side Effects were a little worse than usually this last chemo. A little more fatigue and a little more of that wonderful "ick" feeling as my fellow Hodgkin patients online have labeled it. Right before chemo #11 the nurse gave me a new med, Compazine. It is a good drug. Basically, it takes away the nausea and knocks me out. Sometimes, when you just don't want the "ick" feeling anymore, sleeping through it works really well. Luckily, my folks were here and Brennan was well cared for while I took daily four hour naps from Thursday to Sunday.
Now, I can feel the last remnants of the body aches. Brennan just woke up; more soon!
Side Effects were a little worse than usually this last chemo. A little more fatigue and a little more of that wonderful "ick" feeling as my fellow Hodgkin patients online have labeled it. Right before chemo #11 the nurse gave me a new med, Compazine. It is a good drug. Basically, it takes away the nausea and knocks me out. Sometimes, when you just don't want the "ick" feeling anymore, sleeping through it works really well. Luckily, my folks were here and Brennan was well cared for while I took daily four hour naps from Thursday to Sunday.
Now, I can feel the last remnants of the body aches. Brennan just woke up; more soon!
Thursday, June 9, 2011
Chemo number 12 -- check
ahhhhh.... I am done with chemo! Today was the very last session. I of course am tired and probably won't sleep a lot tonight thanks to the steroids, but once again I am feeling well. I can't jinx us by saying that we made it to the end of chemo because of course there are a few more days of side effects, but I certainly feel like this is a small milestone (I have an array of STUNNING roses in my living room to prove it)! We'll have our first post-chemo scan in early to mid August. I've been praying for us every day, and I can feel all of your prayers as well. Once again, it is very important for the first scan to be clean. Whatever is planned for me in the future, it is good. I know it.
I am also hoping that the shortness of breath and chest tightness from my lungs will heal quickly. I can't wait to go for a run! It may be another couple months, but I can picture me with my blistering pace running around Loyola university and perhaps stopping into their warm and inviting church on the lake. Or perhaps I'll take Brennan with me in our running stroller and head down lakeshore drive; we could even jump in the water to cool us off (no swimming during chemo, but I will be cleared for swimming in another month). Whatever we choose we may be able to run for a whooping 10 minutes; hmmmm ... we're not going to go very far ... are we?
During our chemo yesterday, we did not have our usual infusion nurse. Typically we have Celia and yesterday we had Mary. Nothing against Mary, but Celia is our peeps; she's family whether she wants to be or not. For the past 12 sessions of chemo, Celia, Eric and I have had a rip roaring time. I know, it doesn't seem possible, but it is. The drugs made me loopy and talkative and Celia and Eric were equally able to take my ramblings and run with them. At the beginning of the journey, I heard that you should be yourself during your chemo sessions. Instead of wearing cancer on your face or in your attitude, be YOU! I worked hard at this. For his part, Eric always brought his Tigger attitude (happy, happy, happy - I love that about him), and I was able to have a very positive picture of the chemo drugs (I looked at them as pacman eating up the cancer and sparing the needed normal cells; I did not picture the chemo as poison.), and Celia always walked in with a smile on her face, lots of knowledge, more than a willingness to help, and best of all she brought her great sense of humor that matched Eric and I perfectly. Oddly, I m going to miss the time we enjoyed during chemo sessions (though not the chemo itself), and I'm not kidding. Here's to Celia!!!!!!!
I will continue to write often as you all have taught me to love it!!!! It's taken 32 years to put pen to paper without a grimace, and I would like to thank you all for encouraging me! Of course you're probably just as happy to be able to stop reading this blog as I am to finish chemo, but not so fast. We still have to go through post cancer; I have heard that it can have pitfalls. We have quarterly scans, a gorgeous new mullet that will begin to grow in a few weeks, hospital bills to navigate, we have blood work to find out whether we're part of the 80% post-chemo patients that are able to get pregnant or the other group who can't, we have traveling, running, to-work-or-not-to-work discussions ... OK I'm overwhelmed. Maybe I'll just keep writing instead.
About my hair, I've taken a survey. My hair has started to look like feathers; it's too long and thin and no longer looks good. It's time to cut it ... not off. I'd like people to be able to see hair under my hat, so that's the goal. We'll see if I can muster up the courage to have it cut, or perhaps just do it myself. Maybe Logan should come over and cut it (for those who don't know; I have a cousin-in-law who is very good at home remedies. His home remedies usually involve teeth, but I digress.) I, with my social anxiety (yes yes ... Kari has always been prone to social anxiety .... I try to ignore it most of the time.) do not want to walk into my large and glamorous haircuttery with my feathers. How do you tell a hair stylist that she can't pull on your hair or shampoo it. I have heard of stylists being overwhelmed by cancer patients, and I'm thinking about trying to warn her before I arrive. In fact, I'm going to do that. I need to give her a chance; I might just be surprised.
Bills are an interesting topic as well, or perhaps just a buzz kill. We have 100s of statements for doctors and hospitals. Two different billing offices at Northwestern, one of which has a website with your consolidated bill, one of which does not. We have two insurance companies (my company switched the administrator from Blue Cross Minnesota to Blue Cross Anthem on January 1, 2011.) The current insurance company denied two different claims from the Hospital. Both because they didn't have the right diagnosis code; how many diagnosis codes does "cancer" have? What's funny is that they couldn't tell me what service was provided on those dates. They did however resubmit the $9,700 to the secondary diagnosis code and were hopeful that it would be covered. I have figured out the bills for the surgeries and initial testing/chemo; those bills are done as dinner. I am now waiting for the $9,700 to straighten itself out before paying the rest of the bills. Luckily, I'm not only math capable, but I work in finance. This is all very doable and I guarantee that I will be paying my deductible, plus out-of-pocket maximum, plus copays.... I will not be paying more or less. But, what about everyone else. It's making me increasingly anxious about the elderly's hospital bills. If they don't have a son or daughter to help them, they could overpay. To make things more complex, a stranger would not want someone like me (a volunteer) looking at their person information. Perhaps the finance group at Northwesten will walk through their bills with them. I think I'll ask the finance department that question. Like I said at the beginning ... it's a buzz kill, but I would like to find a way to help.
I forgot to infuse my funnybone between the words of the last paragraph ... can you say rewrite. Alas, I don't have it in my.. I'm hungry. Love to you all! What a wonderful day!! This day (well yesterday ... sleeping got in the way too) could mark the end of cancer and chemo in my life forever ... knock on wood!
I am also hoping that the shortness of breath and chest tightness from my lungs will heal quickly. I can't wait to go for a run! It may be another couple months, but I can picture me with my blistering pace running around Loyola university and perhaps stopping into their warm and inviting church on the lake. Or perhaps I'll take Brennan with me in our running stroller and head down lakeshore drive; we could even jump in the water to cool us off (no swimming during chemo, but I will be cleared for swimming in another month). Whatever we choose we may be able to run for a whooping 10 minutes; hmmmm ... we're not going to go very far ... are we?
During our chemo yesterday, we did not have our usual infusion nurse. Typically we have Celia and yesterday we had Mary. Nothing against Mary, but Celia is our peeps; she's family whether she wants to be or not. For the past 12 sessions of chemo, Celia, Eric and I have had a rip roaring time. I know, it doesn't seem possible, but it is. The drugs made me loopy and talkative and Celia and Eric were equally able to take my ramblings and run with them. At the beginning of the journey, I heard that you should be yourself during your chemo sessions. Instead of wearing cancer on your face or in your attitude, be YOU! I worked hard at this. For his part, Eric always brought his Tigger attitude (happy, happy, happy - I love that about him), and I was able to have a very positive picture of the chemo drugs (I looked at them as pacman eating up the cancer and sparing the needed normal cells; I did not picture the chemo as poison.), and Celia always walked in with a smile on her face, lots of knowledge, more than a willingness to help, and best of all she brought her great sense of humor that matched Eric and I perfectly. Oddly, I m going to miss the time we enjoyed during chemo sessions (though not the chemo itself), and I'm not kidding. Here's to Celia!!!!!!!
I will continue to write often as you all have taught me to love it!!!! It's taken 32 years to put pen to paper without a grimace, and I would like to thank you all for encouraging me! Of course you're probably just as happy to be able to stop reading this blog as I am to finish chemo, but not so fast. We still have to go through post cancer; I have heard that it can have pitfalls. We have quarterly scans, a gorgeous new mullet that will begin to grow in a few weeks, hospital bills to navigate, we have blood work to find out whether we're part of the 80% post-chemo patients that are able to get pregnant or the other group who can't, we have traveling, running, to-work-or-not-to-work discussions ... OK I'm overwhelmed. Maybe I'll just keep writing instead.
About my hair, I've taken a survey. My hair has started to look like feathers; it's too long and thin and no longer looks good. It's time to cut it ... not off. I'd like people to be able to see hair under my hat, so that's the goal. We'll see if I can muster up the courage to have it cut, or perhaps just do it myself. Maybe Logan should come over and cut it (for those who don't know; I have a cousin-in-law who is very good at home remedies. His home remedies usually involve teeth, but I digress.) I, with my social anxiety (yes yes ... Kari has always been prone to social anxiety .... I try to ignore it most of the time.) do not want to walk into my large and glamorous haircuttery with my feathers. How do you tell a hair stylist that she can't pull on your hair or shampoo it. I have heard of stylists being overwhelmed by cancer patients, and I'm thinking about trying to warn her before I arrive. In fact, I'm going to do that. I need to give her a chance; I might just be surprised.
Bills are an interesting topic as well, or perhaps just a buzz kill. We have 100s of statements for doctors and hospitals. Two different billing offices at Northwestern, one of which has a website with your consolidated bill, one of which does not. We have two insurance companies (my company switched the administrator from Blue Cross Minnesota to Blue Cross Anthem on January 1, 2011.) The current insurance company denied two different claims from the Hospital. Both because they didn't have the right diagnosis code; how many diagnosis codes does "cancer" have? What's funny is that they couldn't tell me what service was provided on those dates. They did however resubmit the $9,700 to the secondary diagnosis code and were hopeful that it would be covered. I have figured out the bills for the surgeries and initial testing/chemo; those bills are done as dinner. I am now waiting for the $9,700 to straighten itself out before paying the rest of the bills. Luckily, I'm not only math capable, but I work in finance. This is all very doable and I guarantee that I will be paying my deductible, plus out-of-pocket maximum, plus copays.... I will not be paying more or less. But, what about everyone else. It's making me increasingly anxious about the elderly's hospital bills. If they don't have a son or daughter to help them, they could overpay. To make things more complex, a stranger would not want someone like me (a volunteer) looking at their person information. Perhaps the finance group at Northwesten will walk through their bills with them. I think I'll ask the finance department that question. Like I said at the beginning ... it's a buzz kill, but I would like to find a way to help.
I forgot to infuse my funnybone between the words of the last paragraph ... can you say rewrite. Alas, I don't have it in my.. I'm hungry. Love to you all! What a wonderful day!! This day (well yesterday ... sleeping got in the way too) could mark the end of cancer and chemo in my life forever ... knock on wood!
Friday, June 3, 2011
Hair or lack there of
Here are some pics of my hair .. and I may have added a few pics of Brennan as well ... and the last pic is one I just now found; I've decided it's my favorite pic in the entire world, but I digress. Back to my hair -- I am told it will start growing back about one month after my last treatment. (June 8th last treatment .. July 8th hair growth ... but who's keeping track.) My friend and I decided yesterday that I will have my own personal version of the mullet. A version that virtually no one will be able to recreate; it's like a buzz cut with a few scattered long strands of hair. Perhaps we can think of it as a grassland with scattered trees, or a meadow with some scattered wild flowers. Whatever you call, it has potential to be the worst hairdo you've ever seen. Oh the anticipation is killing you ... I know it.
Wednesday, June 1, 2011
As my PET showed in March, the cancer is gone and it has been surprisingly absent from my thoughts as well; I am ready for chemo to be done. My hair is so thin that I now exclusively wear a hat. I catch myself in the mirror now and then and wonder how Eric and Brennan can still have such a crazy love for me. But of course, they do. Brennan continually takes my glasses and my hat off; both of which I wear to make me look more normal. Bren just wants to see his Mom, or perhaps he's just a 1.5 year old who likes to play with and analyze everything within his reach (the first explanation sounded so beautiful, didn't it?)
I'm not sure my heart could be more full of joy; I'll spare you the details but I am incredibly grateful to my doctors, my family, my community ... you all ... you get the idea. The perfect Chicago weather has something to do with this tidal wave of gratitude. Weather plays such a predominant role in a Chicagoans life that when we finally emerge from hibernation, you can see the happiness spread across everyone's face like a thick princess pink frosting. Chicago in the summer is unbeatable. As the saying goes - thank god for the awful Chicago winter, or everyone would want to live here. I'm guessing you all would agree that the end of chemo and the beginning of the summer coincide nicely (whoo hooo! I feel like I've written that paragraph already on this blog .... hmmmm.... a false start to the Chicago summer perhaps had me fooled, but now the Chicago weather is going to be consistent until October ... I'm sure of it.)
Chemo #11 wasn't a cakewalk, but wasn't bad either. The absence of Bleomycin from my chemotherapy regimen due to pulmonary issues didn't lessen the side effects. I slept more than my past chemo sessions, I have blisters forming on my feet that are starting to annoy me, and I have pesky body aches. To sum it all up, I'm really doing very well. AND, I only have one session left. One week from today, I will have completed 24 weeks of chemo (well 22 and then I'll have another week of side effects but who's counting).
As chemo comes to an end, Eric and I are making normal, everyday life plans. (I am however keeping in mind that the cancer could come back. I don't think it will, but if it does, I want to have at least taken a good look down that path.) Super, super cool (I'm not kidding) boring stuff (I love boring) like looking for a new car. We have a 2000 Pontiac Grand Prix, and we have discovered that it will cost more to fix the air conditioning than the car is worth .... um yeah. Buying things seems to be difficult for Eric and I; a car with air conditioning, furniture that isn't free, clothing that we didn't wear in college.... you get the idea. Eric's hour commute to work in 90 degree heat may not kill him, but his mood after the trip may kill me. (If you know of a good used car or van we could buy, please take pity and give us a shout.)
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