My Journey, Part 2

Author's Note: This is a true story, as I remember it. If you choose to read it, I would like to hear your comments.

My Journey, Part 2

I am home, awaiting my bone marrow transplant. It has been scheduled for late April. Every day, I try to walk around the house as much as I can, but it isn’t much. I can barely make it from the couch to the bathroom, and back, and if the house cleaner is using the vacuum, I can almost not step over the cord. I shuffle, and clutch walls for support. I am extremely weak. It is a struggle to stand up, not just because of weakness but because it hurts. Everywhere. I am hunched over, as the muscles in my back and tummy are too weak to hold me upright. Charles is my backbone, sometimes literally, holding me up when I am too weak to stand.

When I had woken up in ICU, I at first didn’t realize that my body was the thing attached to my neck. It was yellow, the colour of oak cabinets, and had a row of staples holding together a long incision from just below my breastbone to my pelvis. It looked like a wooden doll. I had woken up as Pinocchio. I learned that the yellow was jaundice, as my liver had been severely challenged, but that its function was improving. Slowly, over the next few months, I would become less yellow each day.

Although the scar has healed, and the staples had been removed, I am still curved. I guess if you get cut open then spend several months in bed, unable to move, you heal curved, like a cooked lobster. I joke that I am now a 90-year-old man. I am still pretty much bald, although some straight, black hair was starting to grow in, and I use a walker. I can’t bear to look in a mirror. I haven’t for months, ever since the nurse in the ward, once I was released from ICU, walked in and said, “What have they been doing to you? You look like they have been beating you up”. I guess I had two really black eyes, and my eyes still leaked a bit of blood from all the extra fluid. I was worried that I would frighten my nieces and nephews when they visited. My husband gives me diamond earrings for Christmas, but I won’t put them in because I would have to look in the mirror. I also don’t have the strength or the motor skills to actually get them in my ears. People, kind people, friends and colleagues from work, want to visit, but I won’t let them. Eventually the bruises fade. I let one of my friends, Susan, come to the hospital. I am so glad to see her!

But now I was home, and need to get stronger for the transplant. The doctor who would be in charge of my care told me it would be chemo like I had never had chemo before – and that nearly killed me -- and I was worried that I wouldn’t be strong enough. When you get a bone marrow transplant, they have to give you chemo to destroy all your original immune system, and then irradiate you to make sure it is all gone before the transplant. I call, and ask for another two weeks to get as strong as possible. The doctor agrees, and my anonymous donor also agrees. The only thing I know about the donor is that they will be young, between 17 and 35 years old, probably male, and that the donated blood will be arriving by plane. The relationship is kept anonymous for two years. After that, you can request to know who it is and, if they agree, you can then communicate with them. I am so thankful that a complete stranger would do this for me.

I am also really thin. Although I was extremely hungry in the ICU, that ended. The smell of most food in the hospital made me vomit, and my mouth is so dry it is hard to chew. I could tolerate some liquids, and my family brought me mango smoothies with protein powder to drink. They had to start feeding me intravenously so I stop losing weight and get enough protein. The doctor tells me that if I don’t build up enough protein, the next infection could kill me. Charles has to begin by hand-feeding me as I can't cut my own food. He coaxes me to eat just one more mouthful each night until sometimes I want to scream, "I can't!". The dietician wants me to eat more mashed potatoes, but each night the watery puddle of reconstituted potatoes is sent back, uneaten.

Once I can hold a pen again, they make me write down everything I can eat by mouth. It starts off small: Two cashews, a bite of dried apricot. Half of a vanilla-flavoured Ensure. Half a mango smoothie. Two tablespoons of yogurt. Eventually, I am able to start taking enough food by mouth that they can take me off the intravenous food. Now I am home, the food is more appetizing, but it is still hard to eat enough to gain weight. The dietician tells me not to worry about balanced meals, just to eat anything that will stay down, even if it means eating nothing but ice cream. The trouble is that everything tastes funny. Water can taste oily. Sugar burns my mouth. Meat has a texture I find repellent. Alcohol – well, if sugar burns, just think what even the smallest bit of alcohol feels like. I do my best, and I do end up gaining a bit of weight.

Eventually, the date arrives where I need to get my transplant. On May 2 we go to the cancer centre and I am checked in. The chemo will take place over the next eight days. On day eight, I will get radiation and then the transplant the next morning. For the first couple of days, I am actually allowed to get the chemo and then go home for the night. I have to monitor my temperature. A fever of 38 means call the hospital. A fever of 38.5 means call, and then get to the ward as fast as you can. The first night I am home, I run a fever of 38.5. It is 3:00 in the morning. We bundle me into boots and a coat and drive to the hospital, where I am re-admitted. The fever subsides, but with no immune system, it could have been dangerous.

The chemo goes smoothly. By this, I mean I don’t go into toxic shock. Chemo is never “good”. I am constantly nauseated, and my mouth goes dry. It becomes hard to eat once again, and even harder to keep walking. A physiotherapist comes most days to walk me around the ward. Some days, I can only make it once. Other days, good days, I can go around three times, a total of about 400 meters. When the physio doesn't come, Charles is my de facto physio. When I first got into a ward from the ICU, he would help me do exercises -- without him, I probably wouldn't have walked for several more weeks. I couldn't even bend my knees, and he would put me through an (excruciating) exercise to help me activate those muscles again. Unlike the hospital I was in before, this ward does not allow family to bring food from home and put it in a communal fridge. They can bring food, but only nurses can access it to reduce contamination. I also cannot get smoothies or any “outside” food, again to reduce the chance of bacteria. A great practice, but I miss my mango smoothies. The hospital kitchen makes small containers of fresh-cut watermelon available, and I can eat this. For the next few weeks, I live on watermelon, mushroom soup, and the occasional fresh smoothie my sister makes for me.

The strange black hair that had begun to grow in starts to fall out. I take a shower, and when I towel my head off, much of it falls out. I look like an old monkey, with mange. My husband tells me it will be OK, but I call the nurse right then to have the rest shaved off.

It is time for the radiation. I am scared. They put me onto a stretcher and wheel me down to the radiation unit in the basement. There is a clear plexiglass-framed “bed” that I am put into. Around me, they pack clear bags filled with glass beads, some kind of soft filler that looks like Vaseline, and other things. The bags are meant to diffuse the radiation evenly. When they are finished packing, I can’t move. I am glad that I am only mildly claustrophobic. The only part of me that isn’t packed is my head, which is shielded by special inserts in the plexiglass. I am wheeled into a room where the radiation gun is adjusted and pointed at me. I can feel my heart rate go up. The technologists leave the room, monitoring my progress from a small adjoining room. Charles is there too. I learn later that he is scared, too. An ABBA soundtrack starts to play. I will always associate “Dancing Queen” and “Mama Mia” with full-body irradiation. After seven and one half minutes, they come in and turn me around, to make sure I am evenly radiated. The procedure is repeated in the afternoon.

The radiation doesn’t have immediate obvious effects, but within two days everything is raw. My throat is bloody. They give me what they call a “Pink Lady” – a “cocktail” of numbing medicine you are supposed to drink to make it possible to swallow. It is incredibly painful to do that – swallow – and they rig up a suction tube that I use to suction out my bloody saliva instead of swallow. I am also hooked up to a machine that allows me to hit a button every six minutes to get pain drugs intravenously. However, the pain drugs make me feel worse – really incredibly nauseated and dizzy. I prefer the pain. The doctor comes in and gives me a lecture on how he wants me pushing the pain button every six minutes, but I just can’t. I push it a few times over the weekend, but that’s it.

The transplant itself is like getting a blood transfusion. It arrives in a special cold box, from the airport, and is hooked up to my IV. It looks like a regular bag of blood, but the donor has been given something to drink before donating that will heighten its stem cell content. I am told that a “good” donation has a certain number of stem cells. My donor is exceptional – the levels are several times an acceptable rate. The doctor is very happy. I feel very encouraged.

Eventually, I start to heal. I can’t be released from hospital until my white blood cell counts hit a certain level, to ensure I have at least a rudimentary immune system. Every day, the test my blood and monitor the counts. I am what they call “immunologically naïve”…which means I am like a newborn baby. I have no defenses. Once recovered, I will have to get all of my childhood vaccines again. Measles, chickenpox, mumps.  Everything.

Eventually my counts hit a level that I can get released from hospital and go home. I still go to the hospital every day, where they give me fluid and meds, but I sleep at home. Eventually, the visits get reduced to three times a week, then once a week. I am on immuno-suppressants to help the transplant “take”. There is something called host-versus-graft disease, that people can get to varying levels, when your body tries to reject the transplant. I am lucky. I don’t experience this.

My sisters decide it’s time to get me a wig. I am not sure. I am still fragile, both physically and mentally, and still avoid mirrors even though they tell me I look very regal bald. But they have been so kind, so good to me, and so obviously wanting to do something nice for me, that I agree. It is June, and it is hot out. I have a hard time regulating temperature, probably because I am so thin, so I am either broiling or freezing. The wig place is cool, but I am OK. They take me to a private room to try them on so I have some privacy. If I have learned one thing from all this, it is how kind strangers are, but seeing me also tends to make some of them weep. I am so obviously broken.

I pick a short, dark-blond wig, and I wear it out of the shop. I can see that, with it on, I look more “normal”, although still ill. It is ferociously hot though. I picked a wig that was part synthetic and part real human hair. Wigs made from human hair are much cooler, but also very expensive. My “hybrid” was still many hundreds of dollars. I am reminded of how a former colleague of mine, Joey from Dallas, grew his naturally thick and curly hair really long once so he could donate it for wigs. I am grateful to people like him now. Once I am home, though, the wig comes off as it is so hot. I do take one “selfie”, though, to share with parents, who want to see my new wig. It is the first picture I have taken of myself for a very long time.

Author’s note: I will at some point write Part 3. I find it so hard to relive some of this stuff. My stomach starts to hurt.