Shot Through the Butt, and You're to Blame!

Today I have my bone marrow biopsy. It is supposed to be one of the most painful procedures. We met the nicest man, Gus, when I checked in to the hospital (North Bay) who had just had his done a week before. It was great to hear first hand how it worked and what the pain afterwards felt like. Luckily, I was knocked out for most of it and didn’t feel any pain. It’s funny because they went through my butt crack and into my butt cheek to take part of my pelvis and the bone marrow inside. Talk about a pain in the butt!

Today I also FINALLY got a call from the oncologist with the pathology report. It turns out that the initial biopsy results were correct: I have Diffuse Large B-Cell Lymphoma (DLBCL). Strange that it took almost a month to get results back, but I learned that they had sent my sample to the ‘experts’ in Massachusetts for a second opinion. This was due to the fact that the presentation of the lymphoma was very unusual. Most lymphomas start in the lymph nodes. It's not unusual for it to move from the lymph nodes into other tissues (mostly stomach, spleen, or small intestine), but since none of my lymph nodes are infected and it is mostly in my reproductive tract, they sent it out to be sure. Glad to finally have a definitive answer and be able to move forward with treatment!

W.A.I.T.I.N.G...

It's so frustrating to wait. This whole thing has been an exercise in patience for me, and I'll be the first to admit: some days I failed miserably. I mean, if it was supposed to take a week, and it's been 3 already, how much longer is it going to take? I really appreciate that Dr. Choksi has been personally calling me and giving me updates, even though they're just "I haven't heard anything yet, but I don't want you thinking that I've forgotten you." It was nice to hear how frustrated she was at waiting for the pathology report. She really wants to help me get started as soon as she can. She told me she was on vacation for the next week but called the pathology office that had my sample and gave them her personal cell phone number so that as soon as they have information for her, she can get it to me. Let me just tell you how nice of a change she is from what I'm used to!

MORE Surgery and Scans

My dad keeps joking that I'm glowing in the dark. This is due to the fact that I keep getting injected with radioactive materials for scans. I had a MUGA scan for my heart to make sure it was healthy enough to start treatment. I had a PET scan to make sure that the cancer hadn't spread to other parts of my body that we weren't already aware of (which, finally some good news, it hadn't!) I also had surgery to have an infusaport put in. It's a catheter that goes up into a vein in my neck and has a large round circle at the end. Here's an example:

Blood can be drawn from it and they'll be able to hook right into it when I have to start chemo. I was sold when they told me that not only would it prevent my veins from collapsing from being repeatedly poked, but that some of the chemo treatments I would be receiving could cause serious damage if it somehow leaked from the vein. The round part is just above my heart and under my collar bone while the catheter goes up the vein in my neck. It's pretty close to the surface so that it can be easily accessed and I'm still trying to get used to the feeling of it under my skin.

(Another) New Doctor

After he did the biopsy, Dr. Kirby looked at the sample under the microscope and said that he was fairly certain that it was some kind of lymphoma, which is not something that he treats. He recommended me to the doctors of the Florida Cancer Institute. I ended up with Dr. Choksi, and I must say, I like her a lot. She is very caring and compassionate and understands that most of my concerns revolve around my ability to be a good mom to my 15 month old. She assured me that all of the treatments that I would be receiving (based on the original diagnosis of diffuse large b-cell lymphoma since we were still waiting on the latest biopsy results) would be safe for me to be around him. Can you say HUGE relief? The rest I can do, so long as I can still be with my son. While we waited for the latest pathology reports, she got me set up to meet with a surgeon who would put my port in and get a MUGA scan and a PET scan. Getting all of my ducks in a row so we can start treatment as soon as we have the final pathology report!

FREEDOM!

Went in to have my stent checked to make sure it’s working. They injected dye into my kidney then used x-ray to make sure that the fluid went from my kidney to my bladder. It did, so they were able to take the nephrostomy tube out. What a weird feeling! Without any kind of anesthesia, they clipped the sutures then pulled the tube from my kidney through my back. Lots of pressure and tugging, but surprisingly not painful. Released from the hospital today (at last!) Can not wait to be home!

Here's a pic of what my back looked like right after they pulled my tube. I was expecting a gaping hole. As you can see, not the case!

Attempt #2

Stent placement attempt number 2, this time through the existing hole in my back and kidney. Dr was able to successfully get it in place. Have to wait another day to make sure that it’s working before the nephrostomy tube can come out. Fingers crossed!

Waiting Game

Still sitting in the dang hospital. Nothing new going on. Just wait, wait, wait. And can I just say how upset I am that I’m sitting here doing nothing when I should be at Brennin’s first birthday party? I am NOT a happy camper…

This is the only thing keeping me going:

First (and Second) Surgery

Today will be my first time being completely knocked out. Aside from my c-section, it will be my first surgery. Dr. Kirby thinks we should have results in about a week or so and seems optimistic about the stent placement. Here we go...

When I come out of anesthesia, it's not as bad as I thought it would be. I felt really groggy waking up and my throat is extremely dry, but it could’ve been a lot worse. When I got wheeled from recovery into my room, though, I found out that the stent placement was unsuccessful. Apparently, the tumor is pressing too hard on my ureter and the urologist was unable to get the stent in. Guess what that means? More surgery! Today! Yippee skippee… This time, they’re going to be cutting into my back and my kidney and placing a tube in that leads to a drainage bag. It’s called a nephrostomy tube and it’s supposed to help my kidney drain so that it doesn’t die. They also told me that they had me scheduled for a second stent attempt on Monday (the radiology doctors work ‘bankers’ hours’) meaning that I’m stuck here all weekend! Oh, hooray.

Waiting in pre-op with Chris and asked for water to swish my mouth with since I’m still dried out from the first surgery and unable to take anything by mouth. The nurse gave me lemon swabs instead and they worked wonders! Not only did they moisten my mouth, but they also kept it that way. I asked about the kind of anesthesia that I would be getting for this procedure, and was told it was called ‘Twilight.’ Yes, I will admit it, I asked if it came with a sparkly vampire! *wah wah wah*

Nephrostomy placement went well. I was awake but couldn’t feel a thing and honestly don’t remember much except for how flippin’ COLD it was in the operating room! I now walk around with a ‘tail.’ It’s pretty annoying when it gets heavy and I have to wait for someone to come and empty it for me. I am pretty independent and don’t like this being waited on business!

Here's a pic of my tube:

Oncologist with a Bieber cut?

I get to meet Dr. Kirby today and he's a really nice guy, but I can't seem to get over the Bieber 'do. I instantly like the guy when he basically calls my GYN an idiot because he didn't notice that the cancer was not only in my uterus, but also visible in my cervix. He decides that he wants to do his own biopsy, taking a larger sample to send off. He also noticed that on the CT scan, it looks like my left ureter (the tube that connects the kidney to the bladder) is being pressed closed by the tumor. He schedules for an urologist to be there during the surgery to try to put a stent in that will open my ureter and keep my kidney functioning. Fun, fun!

Results

Wednesday, Thursday at the latest has turned into 2 weeks later. I'm sure the office is tired of me calling daily, but I want to know the results already! When my cell phone rings during class, I grab someone to watch my class so I can call back and get the news that I've been waiting for: biopsy is negative, just some fibroids, really no big deal. When I call, though, I have to wait for the doctor to get on the phone. Never a good sign. He tells me that it's cancer. It looks like lymphoma, namely diffuse large b-cell lymphoma. He won't give me any information about it "because it's not his area of expertise." He gives me the name of a gynecological oncologist, Dr. Kirby, along with his number and an appointment already set up to see him tomorrow afternoon. It's gone from wait, wait, wait to hurry up already. And for some reason, the news just doesn't seem to penetrate my skull. I stare and wait for it to hit: the tears, the fear, something. But all I do is stare.

Say what?!?

Heard back from Dr. Umstead’s office. They called and asked me to come in so Dr. Umstead could discuss the results of the tests with me. I get there and the first thing they drop on me is that they’re going to do a biopsy. Hold the phone! A biopsy?!?! Isn’t that just something they do when they think there’s cancer? I can’t have cancer. I just have irregular bleeding. The nurse tells me to try and relax. They do this every time someone has heavy bleeding. Then Umstead finally comes in the room, says something about it looked like I have fibroids in my uterus that weren’t there during my pregnancy, and since it’s manifested itself so fast that I’ll probably have to have a hysterectomy. Also lets me know that if I lose any more blood and don't take an extra iron supplement daily that I'll have to have a blood transfusion because my iron levels are so low. Mind you, this is all while he’s taking a tissue sample from my uterus (not the most comfortable of things!) He finishes and starts to walk out the door. Whoa, whoa, whoa! I have questions! Does he have time to give me answers? Nope. The only answer I get is that I should have results by Wednesday, Thursday at the latest. He has the nurse photocopy a few pages from a book about fibroid tumors and care after the biopsy. Grr…

Finally!

Dr. Umstead was finally able to get me in today. When he saw me, he said, “Oh, wow, you’re really bleeding a lot.” Isn’t that why I called you? Did you not believe me? Did you think I was overreacting? Ugh. So he does some blood work then sends me to Helen Ellis for an ultrasound and a CT scan of my pelvis and says he’ll meet me over there. Doesn’t. Calls them and says he’ll be in to look at the results first thing in the morning and then call me. Doesn’t. New GYN in the cards for me when this is all over!

It begins...

For about a week, I was experiencing very strange bleeding. I knew it wasn’t my typical period, but took notes and didn’t think too much else of it. On Friday, November 4, I call in sick from work. If you know me, you know this NEVER happens. I call my gynecologist. Again, if you know me, you know this NEVER happens. I tell them what’s going on (I’ll put a description at the bottom, should you want to avoid the gory details) and am told that they will notify the doctor and if he feels it’s serious, he’ll call me back. Does he call me back? No. This continues for a full week before I finally call him again on November 9. He prescribes medroxyprogesterone to try to get the bleeding to stop and made me an appointment for November 11.

*WARNING: GORY DETAILS FOLLOW*

• October 27-heavy bleeding for one hour, nothing else rest of day
• October 28-passed a HUGE clot, probably the size of a golf ball; bled through superplus tampon, liner, underwear, and jeans in less than an hour; bled two hours total, then completely stopped
• October 29-no bleeding
• October 30-no bleeding
• October 31-bled very heavily from 7:30 am-10 am; passing large clots
• November 1-no bleeding
• November 2-spotted before bed, so put a tampon in; took tampon out in morning, completely clean, but started bleeding heavily into the toilet
• November 3-normal, period-like bleeding
• November 4-from 4:30-6 am, extremely heavy bleeding; bled through multiple superplus tampons in under 5 minutes; passing lots of large clots; moment of panic when I sat on the toilet and couldn’t find the string: the tampon had become so saturated that it slipped out on its own (I wasn’t even aware this was possible); decide to call in sick and call the doctor
• November 5-extremely heavy bleeding from 10-11 pm
• November 6-normal, period-like bleeding
• November 7-extremely heavy bleeding from 5-6:30 am
• November 8-had almost entirely stopped bleeding after yesterday’s morning episode; woke up at 1:30 am, tampon nearly empty; wiped and was bleeding very heavy again; inserted new tampon but didn’t even make it into bed before it was saturated
• November 9-after hardly bleeding all day, awoke at midnight to same heavy bleeding, this time accompanied by lightheadedness, shakes, and nausea; took an iron supplement before returning to bed around 1:30; heavy bleeding started again at 2:45 and lasted til 4:45 am; called Dr. Umstead’s office again and was prescribed medroxyprogesterone to stop the bleeding and got an appointment in his office on Friday, November 11
• November 10-moderately heavy bleeding 12:30-1:15 pm