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 |  My experiences of diagnosis/treatment of cancer |
| A day by day journey of my walk down Cancer Road. |
All in all my blood tests are going up, up, up...BUT...my platelets are going down, down, down! While the doctor's nurse always says, "Don't worry about it.." I do! Platelets are essential to clotting and I know that both Chemo and Heparin (a blood thinner which is used daily in the hospital and weekly at the local clinic) to keep my chest tubes open, cause platelets to bite the dust. I am hoping I can convince my doctor to use an alternative to Heparin before I begin my next round of chemo. This is a scary issue for me to deal with. So often it seems the person most concerned with our health is ourself! Yet the doctors are the one calling the shots! I am not very happy with the situation. |
When I am home for a month, I have to see the "vampire" at the local clinic every Monday for blood draws to keep track of my blood counts. They relay the results to my doctor by fax. I came home from the hospital with a Hickman catheter implanted in my chest, with three lines attached that hang outside of my chest which will be used for more chemo in December when I return to the hospital. While in the hospital, blood draws are done daily and these lines are a godsend. I will admit though, that the they are very touchy little buggers. The hospital lab workers often struggle a full ten minutes getting the tube to draw from them. They tell me that it all depends on where the line is laying inside of my chest. So they will then have me do a variety of things to get the blood flowing...hands above my head, deep breaths, turning my head, etc. Well, the gals in the lab at the hospital are used to this "snag" and don't mind taking the time to get a line to work. But at the local clinic, they won't take time...it either works, or it doesn't. So with a very rare exception, they usually get it from my arm, or hand, or any of my small, basically invisible veins they can find. One girl, in particular, is horrible. It's as if because she can't SEE the vein, she has to DIG for it! She is the only one who aims that damn needle down when she draws blood. And afterwards, the cotton swab she tapes on, is always soaked clear through with blood by the time I make the 5-minute trip home! |
| I am currently home for a month, thoroughly enjoying seeing my family daily. While I am not supposed to take any vitamin supplements, I know the importance of good nutrition. The hospital and my doctor seem to fall short in making that a priority equal to my "medical" treatments. So, in lieu of supplements, I have begun eating foods which have essential nutrients in them that can help me fight this cancer. So far, I have learned that Vitamin D and Protein are two of the essentials and can actually prolong a cancer patients life! So I am having a daily shake from Culver's,  and am eating Soy Nuts! The local grocery story carries them in the deli section and they are crunchy, tasty and best of all, have a very positive effect on building Red Blood Cells! I just grab a handful of them every day and munch away. Just ONE WEEK after a daily regimen of eating these, my hemoglobin tested out higher than I have ever seen it. Usually a count of 9.4 is normal for me but with the soy nuts, I tested out at 10.5...better than I've ever seen since I got sick! Normal for women is in the 10-11 range so I am finally normal, lol.I wish I could be treated at the Cancer Treatment Centers of America, where nutrition is given a high priority, but the nearest one is a whole state away and is not covered by my husband's insurance either. Oh well, I'll just keep searching the internet for nutrition help and keep eating better as I learn. There is a lot of truth to the words, "You Are What You Eat!" |
To help me recover as quickly as possible from the effects of the chemo, "growth shots" were begun shortly after my chemo ended. There is a delayed reaction to the chemo in the blood, thus the all important white blood cells, platelettes, and hemoglobin don't respond to it for about a week. When they do, however, those numbers fall as if tumbling off a mountain! Within days of their decline my white cells plunged to an almost non-existant 0.3 and an injection of Nutrogen was begun...one each day until the counts recovered. While I had always been quite squeamish about shots, by this time I was so used to being poked and prodded on that I just shrugged and went with the program. These shots are given in the belly and for the first time in my life, I was glad I had a little mound of belly fat. Many of the nurses told me that most patients think they are rough shots...with extreme burning, to a point that some patients insisted they be given through their IV line. I enjoyed chuckling and telling them I nary felt a thing! I'm sure if I had a bikini thin abdomen then perhaps it might have been painful, but my little belly made them painless for me! |
| Several weeks into my treatment, I became very nauseous one evening. The nurse brought me a large container to gag into and told me to keep it close to my bed in case I needed it during the night. Need it I did! By morning I was totally exhausted and my temperature registered a searing 104.6 degrees! The temperature prompted a quick call to the doctor and IV antibiotics were prescribed and begun immediately. As I lay on my bed like a limp piece of lettuce, the doctor arrived and quickly assessed that the Hickman line which had been implanted in my chest was infected! I was told I would be sent down to the lab where they would remove it. I thought this would be something of a priority but was both upset and angry when the line was not pulled until 6 p.m.!! When I got back to my room and my temperature was taken, I was shocked to learn it had dropped three degrees, nearly instantly, upon the removal of the infected line. There is no doubt in my mind that this should have been a priority instead of leaving me lie sick as a dog all day. The next day when the lab tests came back, I was further shocked, angered and scared to learn that it was also a Staff Infection...one of the most dangerous types of infections found in hospitals! The whole incident served to make me wary of the care I had received. |
| Several weeks after my first round of chemo, my son and his family were able to come for a weekend. Nothing spurred my energy and anticipation more than their visit. While I had talked to Jason and Char almost daily since I had been in the hospital, I had not seen my precious grandchildren. Upon entering my room, little Emma made a beeline for my bed. Her mom lifted her up and she promptly snuggled up against me. I quickly wrapped my arms around her and kissed her sweet little face. It felt sooo good to see her again. Gage, at 13 months, gave me a sweet, recognizing smile but I couldn't be allowed to hold him for fear he would accidently hurt me. When I was first diagnosed, he had flung his little head back into my face, resulting in severe swelling for nearly two weeks. When they had all settled into the local motel, Char entertained them at the water park while Jason came up to spend some one-on-one time with me. He brought me some food from Culver's, hoping I would like it better than the tasteless hospital food, but by then the chemo had altered my taste buds to a point that even that food did not find favor with me. After watching a movie with me on the VCR, Jason returned to his family and I took a much needed nap. The next morning the whole family came to see me once more before their long drive back home. Even though it was a short weekend, it was one I'll always remember with graditude for having a family that loves me. |
| While "exercise" was encouraged to keep my energy level up, I found this to be impossible. The staff brought in a treadmill, placing it between my bed and the wall by the window...the only available space it would fit in. During that first week of constant chemo, any exercise other than walking to and from the bathroom was out of the question. With the addition of a syringe of Ativan to each bag of chemo to counter stomach upset, I was drugged into oblivion the entire first week. Out of a sense of obligation, after the chemo treatment had ended, I did give the treadmill a try. Setting the pace very slow, I walked one-fourth of a quarter mile, roughly one block! That proved to be more than enough to tire me out and I promptly went back to bed and fell asleep watching who-knows-what on television. Other drugs made me tired as well, particularly the morphine "cocktail" ... as the doctor called it, that was given to me prior to my weekly bone-marrow tests. Administered via my IV line, it promptly put me into oblivion and took a good six hours to wear off. Reading, of course, had the effect it always does, even when I am not sick! I had several good books I fully intended to read while confined to that little room, but within fifteen minutes, my eyelids would grow heavy and the book would drop from my hands. |
| I have no doubt that feeding a huge hospital full of people is a daunting task...one I would never want to be charged with. I have never enjoyed cooking and at 62, probably never will. But I love to eat, or at least I did until my only food came from the hospital kitchen. The one thing I craved most was fresh fruit (grapes, cherries, cantalope, etc.) and fresh salads. You can well imagine my disappointment to learn on was put on a "low-microbial" diet and could have none of my favorite things to eat. I knew the doctor would be very upset with me if I didn't eat enough, so for breakfast I settled on one of the hot cream cereals (rice or oatmeal) and doctored them up by adding a serving of canned peaches or pears. It was enough to fill my stomach to a point where the early morning pills that were always given to me by 6 a.m., were buffered by something filling and relatively nutricious. As the days and weeks rolled by, I tried nearly everything on the menu. Since I love cheese, I anxiously tried the macaroni and cheese, as well as their grilled cheese. I tried them several times before declaring them off limits. The cheese on both these items was much like Velveeta, but a generic sub-standard version which turned my stomach. Not only did it taste poorly, but by the time it got served to me in my room, it was so sticky that when I put the fork into the mac and cheese, the entire length of it (a good 6"), came off the plate in one long chunk! (Ugh!) |
| With the chemo running 24/7 along with a large bag of what looked like water...but actually contained Potassium and other things to keep me well hydrated, sleeping at night was especially difficult. In part it was because one or the other of my IV lines would get kinked, or one of my bags would complete it's infusion and then the loud "beeping" of the machine would repeatedly alert me, in particular, that something was needed. Dutifully, I would push the call button for the nurse to get the alarm to be quiet. While I will admit I should have left equipment issues for the nursing staff, after watching and learning what they did to straighten out a kinked line, known as an "occlusion"...I soon became adept at unkinking my own line and resetting the machine so it would continue dispensing it's bags of liquids. It served to save my sanity, as several times I had lain in my bed wide awake and irritated and watched the clock tick out two hours while the infernal beeping continued before a nurse finally made it to my room. I had other issues with the IV pole as well. Being connected to it 24/7 until the final week of my month of treatments, meant "bonding" with it as it would be going literally everywhere that I went. Too frequently that meant coming to the bathroom with me! The first week was by far the worst. I had three IV lines attached to three bags on the pole. While I quickly learned how to get out of bed and wheel it along with me, what I didn't learn so fast was how to get the wheels from running over my IV lines, and how to turn the right way once I got into the bathroom to avoid getting entangled in my lines! Before the first week was over with, I had taken a hefty tumble in the bathroom after I lost my balance, resulting in a nasty bruise on my hip. With my immunities being so completely depleted at that point, and with barely any platelets to help clot my injuries, the bruising was worse than it would have been otherwise and it took weeks to heal. Thankfully it wasn't until after I had better control of the pole that the nurses began giving me Lasix at night to increase my trips to the bathroom. Oh what fun!!! |
| The staff wasted no time in getting me settled in. Before I barely had time to blink, it seemed I was in my bed, my vitals had been recorded, I was given a menu from which to order my meals over the phone, and my family was allowed back in the room for a brief visit with me before leaving. I tried ever so hard to be strong for them all, but in the end I could only nod my head when they said their good-byes. Jason and his family left first. Knowing I wouldn't be seeing my "grandbabies" (ages one and 2-1/2) for weeks, broke my heart. I had been their babysitter from the time they were born and now I felt so cut off from them. Who would watch them while their parents worked? Certainly no one who understood or loved them as much as me. Bill stayed for a short time, encouraging me to eat some lunch. I obliged him by ordering some soup and a sandwich and together we watched "something" on the television, more for distraction than anything. Knowing he had a long drive ahead of him to get home, I reluctantly kissed him good-bye and called the nurse so they could finish getting me settled in. Within a short time I was whisked down to have my bone marrow examined, then wheeled to the lab to have a Hickman Catheter inserted in my chest with three IV tubes that would be used for blood draws, dispensing of medicine and the transfusions that would be a daily part of my "new" everyday life. I felt like a rat in a cage, with no voice to make a change. It was only my complete lack of energy that helped me escape into sleep the majority of that first week. |
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