Tag Archives: blood transfusion

Cancer Free!

The surgery itself went well. It went a bit longer than expected. They estimated 6-8 hours, and it ended up taking closer to 12. I lost a lot of blood and was given a lot of fluids to replace it (I came out weighing 18 pounds more than when I went in). But for the most part there weren’t any real complications.
The surgeons ended up doing exactly what they planned to do. I had a radical hysterectomy (including the ovaries)- which was no big deal since none of those parts worked after the initial rounds of radiation I did back in February. They also removed an entire chain of lymph nodes and some surrounding tissue, my entire vagina, urethra, and bladder. There was nothing wrong with the urethra or bladder, they just happened to be in the way. After they took everything out and tested all the margins to ensure they got all the known cancer (which they did, yay!), they did radiation directly into my body cavity, along my pelvic wall. This was an attempt to get any cancer that they couldn’t see. Then the urologist came in and rerouted my urinary tract. I now have a urostomy, which is a bag that hangs from my belly and collects urine. Here’s a pretty good explanation:http://www.cancer.org/treatment/treatmentsandsideeffects/physicalsideeffects/ostomies/urostomyguide/urostomy-what-is-urostomy
Then a plastic surgeon came in and recreated my vagina using the left half of my ab muscles and the skin that covers them. Imagine a six pack on my stomach. My new vagina is made up of the top two left cans in my six pack (from the outside everything looks normal down in my lady parts). They then had to stretch my skin to cover the missing part on my belly- and as you know, I’m not a large person, so there was a lot of stretching that had to be done! This was one moment in my life when I wish that I was a little chubby. Extra skin would have been super nice right then. I have a scar that runs down the middle of my abdomen from just between my boobs, down around my belly button and into my pubic hair.
As for recovery, things are going pretty well. I spent 16 days in the Mayo Clinic and a few extra days in Rochester after I was discharged. I was admitted to the hospital in StLouis a couple weeks after I got back for dehydration and constipation. I also got a blood transfusion while I was there. That was last week. Since then, things are going fairly well. My appetite is hit or miss and I have 15-20 pounds to gain. I’m down to about 115. In June, I weighed about 130… so there’s some perspective. I’m skinny and it’s driving me nuts!!! I sleep a lot, but I’m not taking my pain meds nearly as often as I was even last week, so that’s good. It’s slow going for sure, but I feel better every day and that’s a good thing.

As of today, I am cancer free. I feel cancer free too! I don’t know if you remember, but after my first round of treatment, I still had a feeling that it was in there lurking. I hope that this is the end of my journey with cancer in my body and that from here on out it will just be advocacy for me!

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It’s Been A Long Time

It’s been a while since I’ve visited my blog for any reason.  Don’t get me wrong… I’ve thought about posting something new tons of times, but every time, that inexplicable yet overwhelming feeling washed over me… that feeling that said “Don’t talk about it” or “I’m tired of talking about it” or “There has to be something else to focus on besides cancer”.

I had a Niagara Falls-esque outpour of emotions right about the time my scheduled treatment was ending.  It was Friday, March 2; the last treatment on my calendar- it was internal radiation.  I had already rung the bell for my last chemo treatment and the bell for my last external beam radiation (there is literally a bell that you ring and then everyone cheers… I cried both times I rang those bells… in fact, by the time I got to the bell for external radiation, I’d already been crying for at least 10 minutes). I was looking forward to ringing the bell one more time to celebrate not only my last internal treatment but my last treatment period.  Well, at some point during the treatment, it was determined that my hemoglobin count had dropped again, and my doctor was recommending another blood transfusion.  He said that my counts would likely go up on their own since chemo and radiation were over, but that it might take several weeks. Let’s be clear here- I did not want the transfusion. I had mentally prepared myself for 7 weeks of treatment, NOT 7 weeks and 1 day. My strength and courage had a shelf life of 7 weeks and they had expired.  It was Saturday, the day after the expiration date, and I was talking with my doctor about my options in regards to the transfusion.  I decided that I would get the transfusion so that I could get back to living sooner.

Cue the Falls.

I was a wreck. I was crying uncontrollably. Later my psychologist would tell me that this happens to a lot of cancer patients. They get an “end of treatment” date in their heads and are able to stay strong until then, and when that date comes, they realize that treatment hasn’t really ended.  They remember that for the next 5 years of their lives they will be poked and prodded and scanned regularly to ensure the cancer is actually gone.  With this realization comes the torrential downpour of all the emotions they wouldn’t let themselves experience before “the end of treatment”.  Ok, so at least the erratic, extreme emotions I was having were on the spectrum of normal.  As bizarre as it may sound, I felt so much better hearing this.  I may have felt like an absolute psycho, but at least I was a normal psycho…

The guys filming the documentary came back to film my transfusion and my appointment with Dr. Mutch.  They also interviewed me for several hours one day.  Creative editing aside, I’m interested to see how I come across, given my state of mind at the time.  Yikes is all I have to say.

In a nutshell, that’s all that’s been going on for me since then.  My psychologist is leading me through some activities to help me establish my “New Normal”. It’s exactly what it sounds like.  My life is no longer going to be like it was before, and I have to figure out what will be normal for me now.  All of this is extra interesting given that my “normal” was in the process of being all shaken up when I found out I had cancer in the first place.  If you’ll remember, I had recently moved from Chicago to work in Florida, but quit that job literally days before my diagnosis to move back to the Midwest, the hubs (who I’d secretly been married to for a year, and had known for only a smidgen longer than that) was in Afghanistan, and I was going to move to Germany with him after his deployment. Somebody, please, for the love of all that is good in this world, point out the “normal” part of what my life was doing pre-diagnosis. And then help me figure out my “New Normal”.  Thanks.

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Week Three

Week Two ended with the news that my hemoglobin count was low.  A woman my size should have a count somewhere around 17 or 18. Mine was 8.9. While the phrase “blood transfusion” had been gracefully thrown onto the table, I was relieved to learn that my inability to peel myself out of bed or do anything while I was laying in the bed for that matter was not so much a product of laziness or even depression, but rather my dwindling red blood cell count.  Who knows where they go when they go, but gone they had and left me glued horizontally to anything that would hold me.  Needless to say, I was nervous at the prospect of having someone else’s blood parts dancing in my body. My doctor said that there was nothing I could do to help raise my count on my own, and the one drug that might be able to help happened to fuel cancer cells… so that option was out. The hurry up and wait game… my favorite.


On Monday, my friend Michelle went to chemo with me.  As promised, I took a picture of the “hat” I get to pee into every time I pee while I’m there.It fits right in the front of the toilet under the seat.  They use it to measure my urine output. If my output is too low after my first bag of saline, they won’t give me chemotherapy- they’ll give me more saline and ask me to drink more.  If my output is too low after chemotherapy and after my normal second bag of saline, they won’t let me go home until my output is satisfactory.  After I pee, I take my full “hat” out of the toilet and place it back on the cart in the bathroom with the other “hats”. It is glorious.

I had a huge breakdown at chemo this week.  They couldn’t find a vein… again… and when they did find one, it wouldn’t sit still long enough for the nurse to get the needle in it.  I hate this so much that I’m not even comfortable typing about it. So I’m going to be quick here.  They tried once and failed.  I started to pass out in the chair. They had me lean over, and I put my head in my hands down by my knees- the perfect position for crying hysterically as it turns out.  Three weeks in and I was done. Done.  My veins had started silently screaming “F You, needle!” every time one came near them. I certainly didn’t need this added stress.  Through my sobs, I managed to communicate that I didn’t want to get stuck ever again (let alone 3 times a week for the next 4 weeks) and that I wanted the nurses to call whomever needed to be called to get me on the schedule to get a Hohn (pronounced “hone”). A Hohn is a catheter that goes into my chest and has two tubes that hang out. With a Hohn, the nurses just plug the IV into one of the tubes.  They can also take blood this way. They got me an appointment for Wednesday. Hallelujah.

The Hohn

The procedure took about an hour, and I was given a mild sedative.  They also numbed me up locally.  I didn’t feel a thing.  Here is the final product.

The black part is a scab and a stitch. It will be cleaned off when the nurses change the dressing on Monday. I can’t get this thing wet, so showering is quite the adventure. I use Press n Seal, per the nurses’ advice, and tape it down around the edges.  In the first shower, it held up fairly well until the very end.  The part by my armpit came untaped, so my right arm was deemed useless.  There’s not a whole lot I can do about that since the terrain up there is less than flat and smooth.  I’ll have to shower more quickly.

The Blood Transfusion

Again, not something I feel super comfortable talking about, so I’ll be quick. On Thursday, I had internal radiation and had my labs drawn. My hemoglobin count dropped to 8.4 in less than a week. My transfusion was scheduled for the next day. I went in, they gave me saline, and then two bags of red blood cells.  I was there for about 5 hours. I made it very clear that I did not want to see the blood bag and that we needed to do our best to cover the line that went from the bag down into my body.

That, my friends, is an IV pole with a towel over the bag and over the tubes that are resting on top of the box. Below that, out of the shot, I have the tube hidden behind the chair I’m sitting in, and a blanket covers that part that runs up under my shirt into the Hohn. I’m freaky about blood, and I’m not ashamed of it. Moving on…

Mid-treatment Meeting With Dr. Mutch

Friday, after the blood transfusion, I met with Dr. Mutch. He did an exam and said the tumor is dying! He estimated the tumor to be 3cm in size- down from 4.6cm. He also said that much of what he could see appeared to be dead… it was purplish black in color. He commented that while I’m down 7lbs since January 3, I look really good. I met with a dietician on Tuesday, and we made a plan, so my weight should level out.  Anyway, he said he thought I looked good… and he said the cancer was dying!!! Great Great Great!

Since Then

I feel like a whole new person since the transfusion. It’s remarkable how much energy I’d forgotten a normal person has. My appetite has also picked up, and I’ve managed to eat several full, healthy person sized meals. I still don’t feel 100%, but I’ll gladly take the improvement. I went to dinner with Nicole last night, and I have Super Bowl plans today. I almost feel normal. It’s nice.

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