So a dear friend of mine was recently diagnosed with breast cancer. I have been saying for years that I wanted to write down about my own experience with cancer and now my 19 year anniversary (of my diagnosis) is coming up, I think that this is a good time to write is all down. Maybe it will help my friend.
So the beginning, well I was 18 and pregnant, just out of high school by about 6 months. My pregnancy wasn’t all that normal, I was sick a lot. But I didn’t know better, I thought it was normal. My first clue that something wasn’t normal was in April. I was about 6-7 months pregnant, working in the PBX room (answering phones) at HQ warehouse and while answering the phones I suddenly got sharp pains in my back. Not in the middle but off to the right hand side, it felt like someone had put a knife in my back and was twisting it. I was in tears, my boss sent me home. I called the doctor’s office and they wanted me in right away, but not to drive. If I couldn’t get a ride, I needed to call an ambulance to bring me in. After a bunch of frantic phone calls, I was able to get Dave to come and pick me up (my daughter’s dad) and bring me to the doctor. The nurse thought I had a collapsed lung, the doctor said it was a pulled muscle and sent me home.
My next sign that things weren’t good was a few weeks later when my legs built up a bunch of fluid. But that’s normal for being pregnant, right? I had so much fluid in there and my feet were so swollen that you couldn’t tell I had toes. I couldn’t wear shoes, I couldn’t get up the stairs to sleep in my bed anymore. I had to sleep sitting up on the couch so that I could breathe. I was sent for an ultrasound on my legs but was told that there were no blood clots and to make sure that I watch my salt content.
About a week or so later the vomiting started. I couldn’t hold down anything, not even water. I started bringing up blood too. My mom brought me to the doctor on June 1st because I was turning blue from dehydration and vomiting blood. The doctor refused to admit me to the hospital. Said I was fine, that this was normal for third trimester. Now this was my first baby, I had just turned 19 by a couple of days. I knew that this guy was talking out of his ass. Throwing up is first trimester, not the third. Nothing about this was normal. I couldn’t walk 5 feet without gasping for breath.
At around 4 am, in the wee hours of June 2nd, I get up to go to the bathroom and my water breaks. Labor starts instantly, right through my back. I was lucky that Dave decided it would be a good idea to sleep on the floor next to me the night before. I got him up. He went and woke my mom up. My contractions were coming quick and hard. We didn’t wait, we headed right to the hospital. My mom was still in her pj’s, she didn’t care, we just needed to get there.
At the hospital they hooked me up to the fetal monitor and Tiffany was doing fine at first but as time went on, her heart rate started to drop. She was in distress, I was in distress and nobody was doing anything. My mom went and grabbed the first nurse and demanded that a doctor come in and that they do a C-section right away before she lost us both. The doc took one look at me, at the monitor and started shouting orders. At 6:42 am, I had a beautiful, perfect baby girl. But I was so sleepy, so tired, I just wanted to sleep. My mom was by my side in the operating room, holding my hand. The anesthesiologist told me that I wasn’t allowed to go to sleep. Mom kept me calm and awake but she knew when he said that there was something wrong.
After they closed me up, the anesthesiologist started ordering a chest x-ray and a CAT scan immediately. We found out the reason that I couldn’t breathe. I had a huge mass in my chest that was wrapped around my heart and lungs. I had a collapsed lung. Because of the mass there was a build up of fluid in my chest that had caused my lung to collapse. The fluid had built up in my legs and feet because of the mass also. A biopsy was done and they determined that I had Non-Hodgkins Lymphoma. I was given 48 hours to live. They had determined that I was beyond stage 4 cancer.
I remember laying in the bed in ICU, I had finally gotten to hold my baby girl for the first time. This was supposed to be one of the happiest days of my life, right? No, they took Tiffany back to the nursery and the doctor came in to break the news to me and my family. At this point it’s not just my mom and Dave, but my dad and step mother. I think my brother, grandmother and my step dad were there too but I was on a lot of meds, I don’t remember. They let me know about the cancer and that they can’t handle my case there, that they are sending me to Brigham and Women’s hospital in Boston, that they want to send me in by helicopter because there’s not much time.
At this point I start to freak out, no, not because of the cancer, not because I’ve been given 48 hours to live. Nope, not that. But because they want me to fly to Boston in a helicopter. At this point in my life I had never flown before and all I could picture was the helicopters from Mash on TV where the stretchers are on the outside. I lucked out and there weren’t any helicopters available, apparently there were a bunch of emergencies that day. So I was rushed in by ambulance.
There are Brigham, they inform my mom that my legs are full of blood clots and that may kill me also, if any travel to my heart and lungs. So they immediately start me on blood thinners to try and head off that danger. My step mother made a phone call to a client who was a doctor at Dana Farber, who called in the top in the research field of Non-Hodgkins Lymphoma. Dr. I I’ll call him. He was doing a study on experimental doses of chemotherapy and it was working well with patients.
He sat my mom and dad down and told them that we could do nothing and let the disease run it’s course, there would be a possibility that the blood clots would kill me or he could try this treatment and that could kill me too. My mom told him that she didn’t care what he did but that he had to save me or “dig a hole big enough for both of us, cause I’m going with her.” The treatment called for two times the lethal dose of chemo for the first couple of treatments to aggressively attack the cancer that had invaded by body.
I don’t remember a lot of the first few weeks of being there. I do remember bits and pieces. I remember my mom and Dave being at my side constantly. And others coming and going quite a bit. I remember the nurses being amazing in the ICU there. I remember that because my veins are horrible that they had to set up this box on the side of my neck that they ran my IV through and that it was sewn onto me. I remember that it had to be changed every 5 days and that it sucked when that happened. I remember having to sit on the edge of my bed and leaning over one of those hospital tables (the rolling type that they put your dinner on) and my mom sitting in front of me holding my hands while they used a big needle with a tube attached to it and drained this pink fluid from around my lungs by sticking the needle into my back. I remember being stuck every day with a shot for this and a shot for that. And let’s not forget the vampires that came each day to take blood. Ok, they aren’t vampires, they are lab techs that draw blood but for fun, mom and I nicknamed them the vampires cause they usually came at night or in the early morning hours.
I remember my mom telling me that after 10 days, she and Dave were told that they needed to go home and rest and shower, change clothes, etc. So they went home. Mom had just gotten out of the shower when the phone rang, apparently I had gone down hill, they were going to have to put me on an iron lung (or in one, however those things work) and that she needed to get back to the hospital right away. We lived an hour away from the hospital. She drove it in under 30 minutes. By the time that they got back, I was sitting up in bed reading a magazine. Apparently, all I needed to know was that she was coming back and I improved. Dr I told my mom she wasn’t allowed to leave my side anymore, lol.
I remember when my hair started to fall out, it was so long, all the way down my back almost to my butt. Chunks started to fall out and I was devastated. One of my nurses came in and sat me in a shower chair, she washed my hair for me (at this point I had been in ICU probably 2-3 weeks, it really needed washing) and then she cut it short for me. So it wasn’t as bad. She saved a bag full so that mom could have it matched to have a wig made. Oh the wig, mom paid a crazy amount of money to have this long haired wig made that matched my hair perfectly. I put it on once and couldn’t wear it. It felt horrible on my head. I cried more over that. I took to wearing scarves on my head. They were soft and in different colors and felt better than the wig. The funny thing that I found out, I have a beautiful bald head, no weird birth marks, no odd shape, it’s perfect. Something I wouldn’t have known if I hadn’t lost all my hair.
I think that after about a month they decided to put the port in and take the IV box off of my neck finally. It was a minor surgery, I wasn’t even supposed to be fully out, but I think because of all the drugs they had in my system I don’t remember much of the surgery at all.
I got bounced back and forth between staying at Dana Farber and the ICU at Brigham and Women’s. Every time that I’d go down hill, they would move me back to ICU. I remember one weekend, Dr I. had to leave the country to re-new his work visa and when he came back I was in ICU at Brigham. He waved his finger at me and said, “what am I going to do with you, I go away for 2 days and you go and get pneumonia on me. I guess I can’t leave you.”
The chemo was horrible. They would start it and it would take hours, but I’d get sick to my stomach, I didn’t want to eat for days. I had to use this special mouth wash stuff so that I wouldn’t get thrush and I got it anyways. And the treatment for thrush was this horrible tasting mouthwash. Oh, it was awful. The nurses did their best to give me the anti nausea meds so that they could try to head off that complication, but sometimes it just didn’t help. Or one time they tried a new combination and I found out I’m allergic to it. I went into convulsions. I was alone in my room, no nurse, no family or friends and I was trying to hit the call button and they tried to talk to get someone there. I was so scared. The good thing was that with one quick injection of Benedryl, it all stopped quickly.
I remember being bored and tired of watching TV, tired of looking through magazines, I couldn’t concentrate enough to read a book, so I was inspired by Three’s Company. Yup, that’s right, I tried a Jack Tripper move. I tried to fold myself up in my bed. Guess what, it’s not possible to do it. The bed will not fold up that much. But what is possible, it’s possible to break the bed and need a new one. I noticed after that, the nurses checked on me more frequently, lol.
All in all, I spent about 2 and a half months in the hospital. It was August, I had only seen my baby a couple of times (she’d cry every time that my mom tried to bring her in, which would upset me more). I was still being told that I wasn’t going to make it. That I probably had 6 months to a year. I begged and pleaded and the doctor finally agreed to let me go home. I was 19 years old, I was thrilled to be going home, but I had a few things that needed to come with me, like a walker because I could barely walk anymore. I had spent so much time in a hospital bed that my muscles had weakened. I needed an oxygen tank too. I still wasn’t breathing well enough on my own, they wanted me on oxygen. Then there were the visiting nurses that came home with me too (well not literally, they came and visited me, lol).
I was home a full 24 hours and I spiked a fever of 105. I got another super fast trip back to the ICU at Brigham’s. You know when you see those medical shows where they dump pails of ice on the patient to bring the fever down. Yeah, that really happens and it really sucks, cause you’re cold to begin with. They had to sedate me because I was freaking out and trying to get out of the ice. They drew out some of my white blood cells, marked them and injected them back into me and then did some sort of a scan (I really don’t remember what it was called). I remember being in my room, Dave was there with me, we were waiting on the scan results to find out where the infection was. It was about 10 or 11 at night, everything was quiet. This young doctor comes in, not Dr I. and he starts talking fast and he has a tray with him and he comes over, rubs some betadyne (that amber colored stuff) on my chest where the biopsy had been done, grabs a scalpel and slices open the biopsy site. He did this all in about 10 seconds. I didn’t have a change to react and neither did Dave. We were both completely in shock. I screamed, nurse came running and yelled at him. I guess he was in a panic when he saw my scan results and wanted to get the infection out of my body as quickly as possible. I get that and appreciate the thought behind that now. But back then I was like – get this psycho with a knife away from me.
So I ended up having the biopsy site in my chest (a couple inches above my right breast) left open, packed with gauze that needed to be changed twice a day and on IV antibiotics to get rid of the infection. This ended up being another 2 weeks in the hospital. When I went home, the gauze only needed to be changed once a day but I still had a couple more days with the IV antibiotics. So the visiting nurses came out, changed my dressing, did my IV, hung out for the hour that it needed to go through, left and came back the following day. I also go to go home with daily injections to boost my white blood cell count.
So my treatment included 3 surgeries (Biopsy, Port installation and the opening of the Biopsy site), 6 transfusions (2 whole blood and 4 platelets), multiple pin cushion episodes (yeah, that’s how I felt), too many vampire visits, scans, x-rays, Chemo, being drugged for days on end (did I mention, I hate taking pills) and the love and support of my family and friends.
My dad, who I am not close with at all, made it a point to come visit me as much as he could. He even let my mom have a night off and he stayed with me overnight so that I wouldn’t have to go through a procedure alone. I have never doubted that my mom loves me. She’s always let me know that, right from the start. But dad doesn’t know how to show his love, he never did. Him staying with me and holding my hand, getting up during the night to empty the water thing on the oxygen (so it would stop making noises), that told me more than anything over the years. I finally knew that my dad loved me and cared about me.
My best friend came in as often as she could. She was only 16 and had to rely on other people to get her there. I remember Marie came and visited me. Someone I was friends with in school but not really out of school. I don’t even know how she knew, but she did.
I think the thing that was the most touching (besides all the visits) was the letters and cards that I got. Everyday I had mail. Someone’s grade school class made me cards, wishing me well. Letters from people at the church that I didn’t know, sending me their prayers. I saved those letters and cards for years. I may still have them in storage some where. I hope that I do. If not, they probably got lost in one of my many moves.
There is so much more that I could add, but this is a good start. Thank you my dear for inspiring me to finally put a lot of this in writing. You know who you are.
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